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By Lori Valenti October 2002 My name is Lori Valenti. I have had an extremely difficult last six months. I just graduated from Umass last Dec. 2001, and got a job that I really loved. After working for the company for about 3 months my boyfriend and I got an apartment together. The very first night I stayed at the apartment I had an awful asthma attack. Over the next 2 months I would go back and forth to allergists, pulmonary specialists, and many other doctors. I was developing skin rashes and becoming very fatigued at the apartment, along with the allergies and asthma. I came down with a bad respirtory infection and finally had to get a lawyer to get my boyfriend and I out of the lease. We had to be out Aug. 1st, this was fine by us. At this point in time, I thought the hard part was over. On July 11th (and I will never forget that date) I was standing at work and I got a very strange sensation in my head. It was not painful, but is was scary and it lasted for about 10 seconds. Immediately following the sensation I became dizzy and started to vomit. I went into the bathroom and started to splash water on my face, but I was still dizzy and nauseous. I came back into the office and realized my vision was blurred. I asked my boss if she would follow me to the doctors. When I went into see the doctor I told him all my symptoms. He said I was depressed and gave me a prescription for Zoloft. Figures! That was a Friday. I went home that night and slept around the clock until Sat. night, when I woke up for about 1 hour and then went back to bed. Sunday morning I went to the ER. They did a spinal tap on me and told me that I had viral meningitis. Later I found out this was not the case. After several weeks of not getting better I went back to the ER. They did blood work and took a urine sample and told me I was fine. About 1 month into this, I woke up in the morning and had an extremely rapid heart rate. I went to the ER and the EKG said 168. That was sitting down. They dismissed it as the lovely "anxiety" and sent me home against my will. The next morning I woke up and my heart was racing again. When I stood up I fainted (the first of about 8 fainting episodes), and I went back to the ER. They did blood work and took my urine again and said I was fine. The doctor specifically told me that there was nothing more that they could do for me there, and that I shouldn't come back. That was a nice feeling when I was so scared about my health… Finally, the following day I was taken to the Mass General and admitted there. I met a wonderful doctor, who is working with me and researching as much as he can about my problem. I was diagnosed there with POTS. My doctors keep telling me that I will get better. The neurologists and cardiologists can't seem to find anything wrong. They just know that my heart beats too fast (and also too slow at night time.) It has been 3 months that I have been really sick. I am mostly bedridden except for the days that I go to the doctor's office. I wake up every morning feeling like you would with the flu. My arms are completely numb. My heart starts to race. Then I take my meds, inderol and midodrine, and I force my way to the couch. I have no strength at all. Before this all happened I was running about 5 miles a day. I am nauseous all day, and for the first 5 weeks was vomitting a lot. I am so dizzy, for the whole day, and I have some concentration problems and vision blurring. I mostly sleep the whole day because of the fatigue and weakness. And through all this every test that I have taken has come back negative, except for the table tilt. I have a good support system and I thank God for my family and my boyfriend who have been so supportive. They have also steered me away from doctors who are quick to label "anxiety". My mind is very confused as to what happened to me. We still don't know what was in the apartment that made me so sick. I am starting to become very depressed about my deteriorating health and I pray for some remission. This all just seems like a very bad dream. I try to do yoga when I feel up to it but, unfortunately, that is not too often. I just say to myself every night before I go to bed, " Maybe I'll wake up tomorrow and it will all be gone." Update: There is Hope, I Promise! By Lori Valenti October 2004 Hi everyone! I want to share my story with everyone, and I hope that it will lift some spirits. I originally became sick in July 2002, and I was diagnosed with POTS in August. I saw Dr. Grubb in November, and a few months after that my doctors found the underlying cause of my POTS, Sarcoidosis. Sarcoidosis is an autoimmune disease that was attacking my lungs and nervous system. I was given large amounts of steroids, and the Sarcoidosis was put in remission. The POTS stayed, but some of my more bothersome symptoms subsided. Through all of this I was very scared. I was, however, not going to let this take over my life. I did extensive research on the diseases, and I found an excellent doctor. I became an aggressive patient that never went to the doctors without a list of questions. I began walking very slowly on the treadmill everyday and just built up my stamina. In the meantime, I was going through what we all go through: testing out different meds, having very bad days, and having very scary new symptoms. I did not skip a day of walking though. Exercise made me feel better and gave me a goal, so I began to do yoga. Yoga made me very focused and balanced and, though I trembled through every move, it made me very strong. I began to read books on nutrition and how important it is to our condition. I cut down on sugar, and I ate smaller portions of food. (So at this point I began to get in very good shape—even though I was fighting this disease.) When they finally took me off the steroids, my Sarcoidosis was in remission, and I lost the rest of the water retention that I had. My medicinal regiment was now only for POTS. Inderal LA to help the severe Tachycardia, Adderal XR to boost the ever-low blood pressure, and Wellbutrin SR (still not sure why I take that exactly, but Dr. Grubb explained it does something with the chemicals in my brain, and it works!) OK, so now for some good news….. A year after I got sick I started back at my job. This took my mind off of my illness and made me feel stronger. I had a very accommodating job that let me work a few days a week. I went back in August 2003, and at that point each month, I was improving drastically. I know my symptoms. I’ve learned how to control them, and I don’t fight them. If I am having a very bad day, so be it! At this point something great happened to me… I was doing things that I normally wouldn’t do because hey, I could again. So, I went to this acting audition in Boston. I was chosen to fly out to Hollywood and compete in an international competition. Well, I ended up winning “Best New Actress of the Year” runner up the month before my boyfriend proposed to me, so I was pretty happy. I was approached in Hollywood by some agents to move out to LA. Well, I did it. Obviously it was a tough decision. I went through many doctors appointments to convince myself that I could do it, and I flew home every three months for check ups, CT scans, EKGs (you name it). I pay “through the roof” prices for a good PPO plan to keep my doctors, but it’s worth it. Anyways, two months after I moved, my agent called me and told me to go on an audition for the CBS reality show Big Brother. Long story short I got it! Yup, I was on the show these past few months, the finale just aired September 21. (Pretty soon you’ll be able to get the DVD.) I won $10,000 the very first night that I was there. Now, I do have to say that I didn’t make it very far. I was evicted after the 3rd week, but that was OK. I started to actually not feel very good in the house, but that was because I was not sleeping and not on a good diet at all. I realized, very quickly again, how important it is to take care of yourself. (BTW, that $10,000 paid off all my medical debt and even got me some other stuff!) I made great friends on the show and had the most unbelievable experience. No one ever even realized that I would get up every morning and have to take three pills. So, I have to take care of myself, big deal, so don’t asthmatics and diabetics? I hope that everyone can feel a sense of hope from this story. I was very, very sick two years ago. I was very depressed, and I thought my life was over. But, I hit rock bottom and was not happy feeling bad for myself. So, I helped myself. It is so important to find a doctor that will work for you and for you to be completely compliant with treatment. Also, help yourself as best you can. Enjoy your days. Educate yourself with literature on this disease, and be an advocate for yourself. Do something that will give you a goal to work towards. Most of all—do not dwell on the negative. Yeah, we have a lot of stuff going on, but I started to feel best when I was no longer scared. You can read all about Big Brother 5 on these websites. (Pretty soon I will have one of my own, and I will have a section that tells all about the disease. I will try my best to keep people educated about the disease, and I’ll keep you updated.) Lori's website: www.lorivalenti.net Big Brother websites: www.cbs.com www.jokersupdates.com www.thefishbowl.com

By Bridgette October 2002 As a youth I was very active, never stopping between choir, organ lessons, a multitude of dance classes (some I even taught), being a Sunday school helper (then teacher), youth group at church, Young Life, marching band, flute lessons, co-captain of the Drill Team and much more. I didn’t have health problems back then. I got pregnant and gave birth to my first son at the age of 18, after marrying the man of my dreams. Around this time I started noticing trouble with my left hip. It would "catch", and I would have to maneuver it back in to place. When my son was 18 mos. old. I was diagnosed with MVP with regurgitation and murmur. I started seeing a Cardiologist and was started on inderal. Over the next 8 years the symptoms got much worse, and the dosage of the inderal went up. In 1994 I gave birth to son number 2, with some complications to pregnancy. I had pre-term labor at 24 weeks. It was stopped with fluids. The same thing happened at 34 weeks. At 39 weeks I had to be rushed to the hospital for pregnancy induced hypertension (158/106). I delivered a healthy son. Over the next few years I had shortness of breath, chest Pain, fatigue, irritable bowel, excessive urination, etc. The hip problems had worsened. In 1997 I became pregnant with son number 3. It seemed like a normal, non-complicated pregnancy until 23 weeks gestation, when I started having contractions. Initially I went on Brethine pills to try to control the premature contractions. They didn't help much, and by 27 weeks I was placed on complete bed-rest with a terbutaline pump and uterine monitor. At 35 weeks they had to discontinue my pump altogether due to severe cellulitis in my left thigh. I went off the pump and delivered my 3rd son five hours later. Four months after this birth I started noticing that each time I would pick my son up out of his crib, car seat, bouncy seat, lean over to bathe him or pick him up off the floor, I would have near syncope or syncopal episodes. One time, I barely escaped collapsing with him in my arms. I had just enough time to pass him off to my husband before I completely passed out, injuring my wrist. My husband finally convinced me to contact my Cardiologist. I wore a holter monitor for 24 hrs., which showed nothing. Then I wore a month long event monitor. This showed periods of time where my heart rate would be fine at 70-80, then all of a sudden shoot up to the 170-180's, then drop to the low 30's. I was sent to an EP who did a tilt table test, and diagnosed me with neurocardiogenic syncope (NCS) in June of 1998. I was taken off of the inderal and started on 10mg of corgard. Over the next year I seemed to be better. I went on the Depo-Provera birth control shot and got pregnant on the shot. I was devastated due to all the complications with my last pregnancy. I cried for three weeks. My husband assured me that everything would work out, and that it was God's plan. I started having contractions 16 weeks into the pregnancy. I started dilating around the 25th week. I was placed on bed-rest at around 25 weeks, with the T-pump and monitoring. My contractions were out of control, and I had a severe reaction to the increased dose of the terbutaline. I had blurred vision, a severe headache, both arms went completely numb and I had chest pain and shortness of breath. I was rushed to the hospital by my husband, and immediately taken off the T-pump. An IV was started. Over the course of the next 48 hours, 7 liters of fluids were run, I was given several shots of a muscle relaxer and I was given two shots of Celestone, which is a steroid given to mature a premature babies lungs. Finally, I was released to go home. At 35+5 weeks gestation I woke up with a severe headache, blurred vision and was extremely "puffy" and swollen again. I knew immediately what this meant. We headed to the Fire Department (where I worked as a paramedic) to check my blood pressure. It was 148/99, with a follow up of 146/102. I was sent to labor and delivery. Things got worse after my daughter’s birth. I had to increase the corgard. When she was around 5 months old I had a syncopal episode while carrying her. Thank God she was in a snow suit. I fell on the cement full force. I felt it coming on, but couldn't get to the ground in time. I just put my hand under her head as I went out. My hands were scratched and bruised. Around April of 2001 I made the decision to go back to work part time. Then my car was hit in an accident. I ended up with major neck, shoulder, ankle and knee problems. The shoulder was the worse. I started physical therapy. While dealing with all of this, the symptoms worsened again. Once again, I was off to see the Cardiologist. He started me on florinef and paxil. During this time, I was beginning to have worsened shortness of breath. I was diagnosed with severe allergies and asthma, and I was started on more medication. My symptoms of NCS got much worse. I was passing out 3-4 times a week, with many more presyncopal episodes. Working 12 hour shifts part time got much worse, and so did the 45 minute drive to work. The brain fog and tunnel vision started 5 minutes after I arrived at work, getting worse throughout the day. In my position, I couldn’t afford to have "brain fog". I had to be ready to respond to high risk deliveries. This could be anything from a micro-premie (23 weeks gestation) to a term baby in major distress. I was in charge of their breathing, or lack thereof. I had to put the breathing tube in, run the Ventilator, give meds. etc.... No room for any errors. I was at work and had a really bad attack and ended up in the Emergency Deptartment. I later had another episode where I passed out and fell down my stairs. I saw my EP again. He thought proamatine would help. My heart rate went down into the mid to high 30's after the first dose of proamatine. It stayed at 37-50 beats per minute for 4-5 days. I was not able to move off of my couch, except to go to the bathroom. I had to crawl at some points to do that. My 13 year old son had to do more that week than a young teenager should ever have to do for their mother and siblings. My husband is a fireman, working 24 hours on, and 48 hours off, and was getting mandated for 12 hours overtime after every shift. My son cooked, dressed the little ones, cleaned, mowed..... you name it. I am not sure what I would have done without him. I was told to stop taking the proamatine. My HR increased to the mid 50's, and my EP had me start on the proamatine once again. My HR again went to the 30's and 40's. How scary, especially since my pharmacist had informed me that the two worse side effects of proamatine were reflex bradycardia and sudden death. My doctor went back and forth over the next month with the proamatine, lowered the corgard, and increased the florinef. I took myself off the paxil, which I had been on for about a year and 1/2 by then. I had not felt any better on it, actually much more fatigued. Sometime in all this I was told I was "hypermobile", and that I had Femoral Patellar Syndrome. I went to the National Dysautonomia Research Foundation 2002 Patient Conference. I talked to a doctor (Dr. Grubb) at the conference who said it didn't sound like the proamatine was working, and that I should go off of it. I also met a lady who told me about Ehlers-Danlos Syndrome. She has it, and she saw some similarities in me. Little did I know she was right. I was later diagnosed with it. My heart rate slowly returned to the 60's-80's after stopping the proamatine. I still had periods where it would go as high as the 130's, then as low as the 30's. With many episodes of passing out still occurring, I put my resignation in at the Fire Department where I had worked as a FF/EMT, and then paramedic, since 1990. This was the hardest thing I have ever had to do. I loved to help people and have a God given gift to do so. But, I did this for my safety and the safety of patients and co-workers foremost. I keep my certifications current, and hopefully will someday to be able to return to this. I saw my EP again, and told him I had discontinued the paxil and proamatine. He said there was no more he felt he could do for me, and he wanted me to see Dr. Grubb for an evaluation and treatment plan. Dr. Grubb diagnosed me with Ehlers-Danlos type III syndrome within the first 10 minutes of the visit. He went over so much during the appointment that I didn't know when my head would quit spinning. Now we have answers, but with more questions. Dr. Grubb prescribed adderal, is weaning me off corgard, and added a baby aspirin a day. With EDS and MVP there is an increased risk of stroke and TIA. I also was prescribed support hose for my 12 hour shifts at the hospital. I am currently undergoing these med changes. So here we are. I just pray each day that my children or grandchildren never have to go through this. Or at least if they do, by us sharing our stories and findings, that they will have an easier time of it. I remain as active as I can at church, work and with my family. Many days it is so hard. I have learned to slow down some and not push myself, because then I am just spent for that many more days. I feel very fortunate to have my 4 wonderful and loving children. They help me through everyday. I am also thankful for my wonderful and very supportive husband. It took him awhile to understand, but he has been by me every step of the way, and through all the falls (literally). I love all of my family and wonderful friends and co-workers.

By Bridgette October 2002 As a youth I was very active, never stopping between choir, organ lessons, a multitude of dance classes (some I even taught), being a Sunday school helper (then teacher), youth group at church, Young Life, marching band, flute lessons, co-captain of the Drill Team and much more. I didn’t have health problems back then. I got pregnant and gave birth to my first son at the age of 18, after marrying the man of my dreams. Around this time I started noticing trouble with my left hip. It would "catch", and I would have to maneuver it back in to place. When my son was 18 mos. old. I was diagnosed with MVP with regurgitation and murmur. I started seeing a Cardiologist and was started on inderal. Over the next 8 years the symptoms got much worse, and the dosage of the inderal went up. In 1994 I gave birth to son number 2, with some complications to pregnancy. I had pre-term labor at 24 weeks. It was stopped with fluids. The same thing happened at 34 weeks. At 39 weeks I had to be rushed to the hospital for pregnancy induced hypertension (158/106). I delivered a healthy son. Over the next few years I had shortness of breath, chest Pain, fatigue, irritable bowel, excessive urination, etc. The hip problems had worsened. In 1997 I became pregnant with son number 3. It seemed like a normal, non-complicated pregnancy until 23 weeks gestation, when I started having contractions. Initially I went on Brethine pills to try to control the premature contractions. They didn't help much, and by 27 weeks I was placed on complete bed-rest with a terbutaline pump and uterine monitor. At 35 weeks they had to discontinue my pump altogether due to severe cellulitis in my left thigh. I went off the pump and delivered my 3rd son five hours later. Four months after this birth I started noticing that each time I would pick my son up out of his crib, car seat, bouncy seat, lean over to bathe him or pick him up off the floor, I would have near syncope or syncopal episodes. One time, I barely escaped collapsing with him in my arms. I had just enough time to pass him off to my husband before I completely passed out, injuring my wrist. My husband finally convinced me to contact my Cardiologist. I wore a holter monitor for 24 hrs., which showed nothing. Then I wore a month long event monitor. This showed periods of time where my heart rate would be fine at 70-80, then all of a sudden shoot up to the 170-180's, then drop to the low 30's. I was sent to an EP who did a tilt table test, and diagnosed me with neurocardiogenic syncope (NCS) in June of 1998. I was taken off of the inderal and started on 10mg of corgard. Over the next year I seemed to be better. I went on the Depo-Provera birth control shot and got pregnant on the shot. I was devastated due to all the complications with my last pregnancy. I cried for three weeks. My husband assured me that everything would work out, and that it was God's plan. I started having contractions 16 weeks into the pregnancy. I started dilating around the 25th week. I was placed on bed-rest at around 25 weeks, with the T-pump and monitoring. My contractions were out of control, and I had a severe reaction to the increased dose of the terbutaline. I had blurred vision, a severe headache, both arms went completely numb and I had chest pain and shortness of breath. I was rushed to the hospital by my husband, and immediately taken off the T-pump. An IV was started. Over the course of the next 48 hours, 7 liters of fluids were run, I was given several shots of a muscle relaxer and I was given two shots of Celestone, which is a steroid given to mature a premature babies lungs. Finally, I was released to go home. At 35+5 weeks gestation I woke up with a severe headache, blurred vision and was extremely "puffy" and swollen again. I knew immediately what this meant. We headed to the Fire Department (where I worked as a paramedic) to check my blood pressure. It was 148/99, with a follow up of 146/102. I was sent to labor and delivery. Things got worse after my daughter’s birth. I had to increase the corgard. When she was around 5 months old I had a syncopal episode while carrying her. Thank God she was in a snow suit. I fell on the cement full force. I felt it coming on, but couldn't get to the ground in time. I just put my hand under her head as I went out. My hands were scratched and bruised. Around April of 2001 I made the decision to go back to work part time. Then my car was hit in an accident. I ended up with major neck, shoulder, ankle and knee problems. The shoulder was the worse. I started physical therapy. While dealing with all of this, the symptoms worsened again. Once again, I was off to see the Cardiologist. He started me on florinef and paxil. During this time, I was beginning to have worsened shortness of breath. I was diagnosed with severe allergies and asthma, and I was started on more medication. My symptoms of NCS got much worse. I was passing out 3-4 times a week, with many more presyncopal episodes. Working 12 hour shifts part time got much worse, and so did the 45 minute drive to work. The brain fog and tunnel vision started 5 minutes after I arrived at work, getting worse throughout the day. In my position, I couldn’t afford to have "brain fog". I had to be ready to respond to high risk deliveries. This could be anything from a micro-premie (23 weeks gestation) to a term baby in major distress. I was in charge of their breathing, or lack thereof. I had to put the breathing tube in, run the Ventilator, give meds. etc.... No room for any errors. I was at work and had a really bad attack and ended up in the Emergency Deptartment. I later had another episode where I passed out and fell down my stairs. I saw my EP again. He thought proamatine would help. My heart rate went down into the mid to high 30's after the first dose of proamatine. It stayed at 37-50 beats per minute for 4-5 days. I was not able to move off of my couch, except to go to the bathroom. I had to crawl at some points to do that. My 13 year old son had to do more that week than a young teenager should ever have to do for their mother and siblings. My husband is a fireman, working 24 hours on, and 48 hours off, and was getting mandated for 12 hours overtime after every shift. My son cooked, dressed the little ones, cleaned, mowed..... you name it. I am not sure what I would have done without him. I was told to stop taking the proamatine. My HR increased to the mid 50's, and my EP had me start on the proamatine once again. My HR again went to the 30's and 40's. How scary, especially since my pharmacist had informed me that the two worse side effects of proamatine were reflex bradycardia and sudden death. My doctor went back and forth over the next month with the proamatine, lowered the corgard, and increased the florinef. I took myself off the paxil, which I had been on for about a year and 1/2 by then. I had not felt any better on it, actually much more fatigued. Sometime in all this I was told I was "hypermobile", and that I had Femoral Patellar Syndrome. I went to the National Dysautonomia Research Foundation 2002 Patient Conference. I talked to a doctor (Dr. Grubb) at the conference who said it didn't sound like the proamatine was working, and that I should go off of it. I also met a lady who told me about Ehlers-Danlos Syndrome. She has it, and she saw some similarities in me. Little did I know she was right. I was later diagnosed with it. My heart rate slowly returned to the 60's-80's after stopping the proamatine. I still had periods where it would go as high as the 130's, then as low as the 30's. With many episodes of passing out still occurring, I put my resignation in at the Fire Department where I had worked as a FF/EMT, and then paramedic, since 1990. This was the hardest thing I have ever had to do. I loved to help people and have a God given gift to do so. But, I did this for my safety and the safety of patients and co-workers foremost. I keep my certifications current, and hopefully will someday to be able to return to this. I saw my EP again, and told him I had discontinued the paxil and proamatine. He said there was no more he felt he could do for me, and he wanted me to see Dr. Grubb for an evaluation and treatment plan. Dr. Grubb diagnosed me with Ehlers-Danlos type III syndrome within the first 10 minutes of the visit. He went over so much during the appointment that I didn't know when my head would quit spinning. Now we have answers, but with more questions. Dr. Grubb prescribed adderal, is weaning me off corgard, and added a baby aspirin a day. With EDS and MVP there is an increased risk of stroke and TIA. I also was prescribed support hose for my 12 hour shifts at the hospital. I am currently undergoing these med changes. So here we are. I just pray each day that my children or grandchildren never have to go through this. Or at least if they do, by us sharing our stories and findings, that they will have an easier time of it. I remain as active as I can at church, work and with my family. Many days it is so hard. I have learned to slow down some and not push myself, because then I am just spent for that many more days. I feel very fortunate to have my 4 wonderful and loving children. They help me through everyday. I am also thankful for my wonderful and very supportive husband. It took him awhile to understand, but he has been by me every step of the way, and through all the falls (literally). I love all of my family and wonderful friends and co-workers.

By Jennifer Mieirs July 2002 I have always had near syncope and fatigue. I'd had my thyroid checked several times because of the fatigue. In December 1999, I was working, and began having palpitations. I didn't feel "right", and was concerned. I am a critical care nurse, and I went to the emergency room. The ER doctor thought it was stress, but because he knew me, he decided to run a holter to "placate" me. The next day he apologized. I was lucky. I was diagnosed with Postural Orthostatic Tachycardia Syndrome only three months after I became symptomatic. Those three months were not pleasant. My heart rate was running 140 and up. I was scared, and didn't know what was wrong. I worried I might harm one of my patients if I "fainted" from the increased heart rate. The cardiologist, another colleague, put me on Digoxin without seeing me first, and it made my symptoms worse. I missed more days than I worked. I ended up filing bankruptcy because I got behind on everything. A month later, when I saw him, he tried me on Rythmol. In three days I couldn't move without feeling like I was going to pass out, so back I went on Digoxin. I was worried that the doctor was going to tell me it was all in my head when I finally went to see a cardiologist. My physicians (I had to change during this time because of a change in who was on my policy for work) encouraged and reassured me. They told me the proof was on my holter report, and that I was not going crazy. Most patients aren't that lucky, but again, these were doctors I worked with and trusted. By this time, a tremor I had always had worsened. My headaches, which have always been a problem, were bad. The headaches were in the area attributed to stress headaches, the back of the neck, so the doctors thought it was stress. I was already on Ativan, but they changed me to Xanax, and added Elavil and Fiorcet. Nothing worked, it just made me feel more tired. Finally, in desperation, while waiting another month to see the Electrophysiologist, I began my own search. I used my credentials to join every medical journal or society I could find online. One night, bingo, a web search produced Chris Calder's web page. I had already noticed my heart rate increases and palpitations occurred while I was standing. A second 24 hour heart holter monitor showed my heart rate rising from 52 to 168. I noted on the diary that this happened when I stood. It corresponded with the increased heart rates on the report. Chris sent me an article by Dr. Blair Grubb. After reading that, I printed it out and took it to my doctor. He read it and said, "I think you have something with this." We just had to wait for the EP visit. My EP is a good doctor, but has a lousy bedside manner. I saw her twice. Once in her office, and the second time for my tilt table test. During the tilt test, I was miserable. After they gave the Isuprel, I just wanted it to be over. It felt like an eternity. When they were bringing me down, at about 45 degrees, I felt like my heart had stopped. My rate went from 160 to 52 in two seconds. I will never do that again! I was prescribed the usual fluids, 2 liters to a gallon a day, and extra salt, compression stockings, and pindolol. I was already on Xanax for GABA inhibition, though I never took it three times a day. I can't take it and work, it is a legal issue. The pindolol helped my heart rate, but did nothing for my palpitations. Instead, it made them worse. I was still worried because, even with meds, my heart rate still ran 120. I was concerned about developing cardiomyopathy. This concern was pushed aside by every one of my doctors I asked. One night, about three months later, one of the electrophysiologists was on the floor to see a patient. He was kind enough to talk to me for over an hour about my POTS. He told me yes, I was right, running a high heart rate for an extended length of time can cause cardiomyopathy, but if I kept my heart rate under 120 I should be okay. He also suggested I switch to lopressor instead of pindolol to get rid of my palpitations. He told me most women do well with pregnancy and that the hormones and fluid retention alleviate the symptoms. They can take their meds if needed, but a pediatrician should attend the birth. All the worries no one would talk with me about, he addressed. That was over two years ago. I find my symptoms harder to control, and will probably have to go back and readjust my medications. I still suffer from chronic fatigue, even with medicines. The only thing anyone can tell me about that is to rest when I am off work. Taking care of myself, and listening to my body is the best medicine for me. There is no cure. I have always had a high ability to function. From my talk with the EP that night at work, I am a classic case of someone who has always had the problem, I just wasn't symptomatic. I don't know why all of a sudden I noticed what had been happening to me for years, I just did. At least now, I know why I am tired, why I have headaches, why I get tremors, why I have near syncope, and why my heart pounds. Living with this disorder is a challenge. Most people, including the medical community, don't know about it, or don't know what to think about it. It is a life altering condition, and only personal stubbornness keeps me going at times. I don't want to let this condition rule my life, I want to rule it, though at times it does feel like a losing battle.

By Jennifer Mieirs July 2002 I have always had near syncope and fatigue. I'd had my thyroid checked several times because of the fatigue. In December 1999, I was working, and began having palpitations. I didn't feel "right", and was concerned. I am a critical care nurse, and I went to the emergency room. The ER doctor thought it was stress, but because he knew me, he decided to run a holter to "placate" me. The next day he apologized. I was lucky. I was diagnosed with Postural Orthostatic Tachycardia Syndrome only three months after I became symptomatic. Those three months were not pleasant. My heart rate was running 140 and up. I was scared, and didn't know what was wrong. I worried I might harm one of my patients if I "fainted" from the increased heart rate. The cardiologist, another colleague, put me on Digoxin without seeing me first, and it made my symptoms worse. I missed more days than I worked. I ended up filing bankruptcy because I got behind on everything. A month later, when I saw him, he tried me on Rythmol. In three days I couldn't move without feeling like I was going to pass out, so back I went on Digoxin. I was worried that the doctor was going to tell me it was all in my head when I finally went to see a cardiologist. My physicians (I had to change during this time because of a change in who was on my policy for work) encouraged and reassured me. They told me the proof was on my holter report, and that I was not going crazy. Most patients aren't that lucky, but again, these were doctors I worked with and trusted. By this time, a tremor I had always had worsened. My headaches, which have always been a problem, were bad. The headaches were in the area attributed to stress headaches, the back of the neck, so the doctors thought it was stress. I was already on Ativan, but they changed me to Xanax, and added Elavil and Fiorcet. Nothing worked, it just made me feel more tired. Finally, in desperation, while waiting another month to see the Electrophysiologist, I began my own search. I used my credentials to join every medical journal or society I could find online. One night, bingo, a web search produced Chris Calder's web page. I had already noticed my heart rate increases and palpitations occurred while I was standing. A second 24 hour heart holter monitor showed my heart rate rising from 52 to 168. I noted on the diary that this happened when I stood. It corresponded with the increased heart rates on the report. Chris sent me an article by Dr. Blair Grubb. After reading that, I printed it out and took it to my doctor. He read it and said, "I think you have something with this." We just had to wait for the EP visit. My EP is a good doctor, but has a lousy bedside manner. I saw her twice. Once in her office, and the second time for my tilt table test. During the tilt test, I was miserable. After they gave the Isuprel, I just wanted it to be over. It felt like an eternity. When they were bringing me down, at about 45 degrees, I felt like my heart had stopped. My rate went from 160 to 52 in two seconds. I will never do that again! I was prescribed the usual fluids, 2 liters to a gallon a day, and extra salt, compression stockings, and pindolol. I was already on Xanax for GABA inhibition, though I never took it three times a day. I can't take it and work, it is a legal issue. The pindolol helped my heart rate, but did nothing for my palpitations. Instead, it made them worse. I was still worried because, even with meds, my heart rate still ran 120. I was concerned about developing cardiomyopathy. This concern was pushed aside by every one of my doctors I asked. One night, about three months later, one of the electrophysiologists was on the floor to see a patient. He was kind enough to talk to me for over an hour about my POTS. He told me yes, I was right, running a high heart rate for an extended length of time can cause cardiomyopathy, but if I kept my heart rate under 120 I should be okay. He also suggested I switch to lopressor instead of pindolol to get rid of my palpitations. He told me most women do well with pregnancy and that the hormones and fluid retention alleviate the symptoms. They can take their meds if needed, but a pediatrician should attend the birth. All the worries no one would talk with me about, he addressed. That was over two years ago. I find my symptoms harder to control, and will probably have to go back and readjust my medications. I still suffer from chronic fatigue, even with medicines. The only thing anyone can tell me about that is to rest when I am off work. Taking care of myself, and listening to my body is the best medicine for me. There is no cure. I have always had a high ability to function. From my talk with the EP that night at work, I am a classic case of someone who has always had the problem, I just wasn't symptomatic. I don't know why all of a sudden I noticed what had been happening to me for years, I just did. At least now, I know why I am tired, why I have headaches, why I get tremors, why I have near syncope, and why my heart pounds. Living with this disorder is a challenge. Most people, including the medical community, don't know about it, or don't know what to think about it. It is a life altering condition, and only personal stubbornness keeps me going at times. I don't want to let this condition rule my life, I want to rule it, though at times it does feel like a losing battle.

By Janet Bray June 2002 My saga with POTS starts in 1989, at the age of fifteen, but since my diagnosis I have been able to put events from my childhood into more perspective. As an infant, my mother tells me, I would lay in bed and cry, then hold my breath until I turned blue and pass out. They never found out why for certain, but they assumed that the fact that I was born with an underdeveloped digestive system and a roaring intolerance to lactose was at the root of it. I was a sickly, small infant and small child. In grade school, I could never understand how anyone else could run the laps we were told to run. I was always the last one to finish, especially in wintertime, when the cold air closed my throat and made breathing almost impossible. I always figured I was just not cut out to be an athlete. It wasn't until a few months ago, shortly after my diagnosis, that I found out that not everyone gets dizzy and lightheaded when they exercise. I assumed that was the reason so many people hated to exercise, because it was certainly right at the top of my list. Fast forward fifteen years. I was the flute section leader in band, and had the responsibility of seventeen young floutists for the last month of a very hot summer. Texas summers stay in the upper 90s and low 100s most of the time, and August is the hottest part of the summer. High humidity makes it almost unbearable, and we went through a ritual at the start of summer band practice every year, explaining the need to stay hydrated, not lock your knees when standing outside, and take frequent breaks. The freshmen every year absorbed this with wide-eyed emotions that bordered fear, but us old hands knew it generally wasn't a problem. Growing up in this climate, most of us get used to the heat. One afternoon, the entire band was on the field in marching formation, standing at attention. Some knuckleheads in the percussion section were making noise, and the band director kept us standing at attention, waiting for our Gatorade break, until they stopped. I began to feel woozy, and checked to see if my knees were locked. They weren't. Flocks of black crows clouded my vision, my knees buckled, and I woke up an undetermined time later looking up at the impossibly blue sky. This was the genesis of a thirteen year search for answers. The first response was from my band director. He cautioned me again about staying hydrated and not locking my knees, and pooh-poohed me when I said I hadn't locked my knees. My section stared at me in bewilderment. Some of the kids snickered and said "Oh, she's faking it. She just wanted to get Gatorade before the rest of us got it." When I told my mother what had happened, she recalled times when she was pregnant when she would pass out, particularly while grocery shopping. She wrote it off as something of a rite of passage. I continued to pass out, however. The first thing I noticed was that I was hot when the lights would go out. So I tried to stay cooler, but my position in the band forced me to set an example and not "wimp out" and run inside the second sweat started to run down my face. The morning calesthenics were getting more and more difficult to get through. The typical light-headedness I would experience during exercise became full-out nausea and fainting. Four or five faints later, my mother decided to find out what was going on. She took me to the family doctor, who had delivered me and was a family friend as well. He shook his head in befuddlement and referred us to a neurological facility for testing. The first suspect was epilepsy, since my sister had had the juvenile form for the first ten years of her life. But an EEG returned a normal reading. They wired me with a 24-hour EEG and sent me home. The results, again, were normal. So, they took a three-pronged approach. I was to fast from 8 pm for a glucose tolerance test and stay up all night for a sleep-deprived EEG. The next day, those two tests and a CAT scan revealed nothing abnormal. The doctors told my mother that I was looking for attention and that by taking me to the doctor, I was getting rewarded for it. They said there was absolutely nothing wrong with me physically and that she should put me back out on the summer band field and let me build up some more heat tolerance. So, she did. I continued to faint throughout the marching season. I'm not sure my mother believed the doctors, though. She went to every game with me, making sure I had cold rags and Gatorade to help revive me when I did faint. The band finally realized I wasn't faking it when I passed out in the middle of a song during halftime. We took precautions to try and stop the fainting, but they didn't work, so we simply treated the results with cool water and rest after a faint. At some point, I stopped passing out. I thought the problem had gone away, and so did my mother. But when I got pregnant at the age of 17, I began experiencing symptoms again. It was then that I finally noticed that my heart rate was extraordinarily high. One day in a class, I took my pulse when I was feeling dizzy, and sitting in the chair, my pulse was over 120. I knew something wasn't right. Armed with this new information, I visited a cardiologist. More tests followed - an EKG, an ECG, and a Holter monitor that would record events. The cardiologists found nothing wrong, but did note the pulse was too fast. They told me I was just emotional, due to the pregnancy, and that I should try yoga to calm myself down. After getting no validation from those doctors, I decided so many doctors couldn't be wrong, and just lived with it. I stayed as cool as possible, and stayed off my feet or walked around when I felt bad. After the birth of my daughter, it went away again and stayed gone for two years. However, a nasty divorce and drastic lifestyle change prompted a resumption of symptoms, and I was flush with dizziness, light-headedness, and tachycardia. I noticed my collarbones would hurt when I got hot or drank alcohol on an empty stomach. Nobody I talked to had ever experienced this. I also discovered that my symptoms were at their worst when I was standing still. One afternoon, I was standing in line at the post office. Accustomed to taking my pulse frequently and sitting down when I felt bad, I no longer worried about falling and hurting myself. But that afternoon in the post office, I recorded my first heart rate over 160. The swarms of crows were back, and I woke up on the floor with concerned faces staring back at me. I went to the emergency room immediately. The emergency nurse took my pulse while I was laying on the examining table. Naturally, it was a normal 70 beats per minute. She screwed up her face in confusion and I told her it only happened when I stood up. She apparently did not believe me, and all I got for my time was a half-hearted order from the physician to see a cardiologist. Having been down that road, I was reluctant, but followed his instructions. I began to have migraines at this point, but did not connect them to the tachycardia. The cardiologist set me up with yet another Holter monitor, and when the results came back normal, but fast, he told me I was just too stressed, and needed to see a psychiatrist and get on a mood stabilizer. Frustrated and certain he was wrong, I ignored his suggestion and left. I developed my own methods of dealing with POTS. I stopped going anywhere that I might have to stand in line, or get too hot. When I felt bad, people would notice. In answer to their concern, I told them "I just have this weird heart thing nobody can figure out. I'm ok. It's no big deal." But inside, I yearned for some kind of answer. I had spells on and off for the next several years, most of which were largely ignored. I stopped paying attention to it, and sitting down when I was dizzy became an unconscious reaction. Then I got a job that had excellent insurance. At first, I didn't have any symptoms, and so did not pursue answers. One day I was outside smoking a cigarette with my best friend, a guy who has an insatiable need for answers. The two of us discussed my problem repeatedly, and he urged me to seek help again. He worried that I would pass out when I was alone again, and hurt myself. At his insistence, I visited a cardiologist again. This time I was armed with more information. I knew what situations provoked my symptoms, and I had typical heart rate information ready. He examined me for five minutes, and promptly said "I know what's wrong with you." The relief I felt was unimaginable. Someone actually acknowledged I wasn't crazy! Someone knows! He said "You have inappropriate sinus tachycardia. Short of surgery, which doesn't always work, there's nothing we can do. You just have to live with it." Relieved, but frustrated, I turned to the Internet for answers. Now that I had a name for this "weird heart thing," I could find out if he was right about treatment. He was, unfortunately. I found many stories from other people who had found no relief from their symptoms. The good news was that it was not fatal. At some point, my symptoms went away again, and I lived a relatively normal life. Last October, all that changed. My father in law, who I was close to, informed us the weekend after Labor Day that he had lung cancer and was undergoing chemotherapy. Two weeks later, he began coughing up blood and was transported to MD Anderson, where he collapsed. My husband and I immediately drove to MD Anderson, which is two hours away. His father never regained consciousness, but for a week, we rode the interminable ride of the Cancer Center's ICU. Good news would come, then bad news, and our emotions cycled wildly, waiting for answers. Finally, he declined and passed away. My husband and I helped his stepmother make funeral arrangements and get her back home and settled in their home. The stress of that event brought on this latest episode. The symptoms seemed to be getting worse, my heart would race faster, and I discovered new situations that would bring the tachycardia to a fever pitch. Frustrated again, I turned back to the Internet. Surely, there was new information. And I found it. In an article on About.com, the author noted a large number of people who had been misdiagnosed with inappropriate sinus tachycardia really were affected by a problem with the autonomic nervous system. The article contained a link to the National Dysautonomia Research Foundation. At NDRF's website, I found loads of valuable information. Through reading their material, I became convinced that my problem was postural orthostatic tachycardia syndrome. NDRF mailed me papers that a Dr. Grubb had written. Dr. Grubb proved to have a pretty good handle on POTS and the parent disorder: dysautonomia. I wanted to have a tilt table test run, so I took the medical abstracts and papers that NDRF sent me to my doctor - the same one who had seen me shortly after this had started. He ordered a tilt table test. According to the cardiologist who ran the test, I tested "so positive it's not even funny." He diagnosed me with POTS as well as neurocardiogenic syncope (NCS). At 28, I had finally ended my quest for answers, but my journey for a treatment had just begun. Our first line of attack was beta blockers. They helped considerably, but I was allergic to three in a row. Florinef, a steroid that would theoretically increase blood pressure, did not work, either. I am currently taking Midodrine, a vasoconstrictor which will help increase blood pressure, and it has prevented me from passing out. But the tachycardia remains unaddressed. I am now armed with a cardiologist who not only understands more about dysautonomia than 99% of the doctors in the country, but is also willing to experiment, listen, and accept research I've done on my own. Together, we will conquer this illness, and I won't have to see concerned looks or give enigmatic answers to questions about my health.

By Janet Bray June 2002 My saga with POTS starts in 1989, at the age of fifteen, but since my diagnosis I have been able to put events from my childhood into more perspective. As an infant, my mother tells me, I would lay in bed and cry, then hold my breath until I turned blue and pass out. They never found out why for certain, but they assumed that the fact that I was born with an underdeveloped digestive system and a roaring intolerance to lactose was at the root of it. I was a sickly, small infant and small child. In grade school, I could never understand how anyone else could run the laps we were told to run. I was always the last one to finish, especially in wintertime, when the cold air closed my throat and made breathing almost impossible. I always figured I was just not cut out to be an athlete. It wasn't until a few months ago, shortly after my diagnosis, that I found out that not everyone gets dizzy and lightheaded when they exercise. I assumed that was the reason so many people hated to exercise, because it was certainly right at the top of my list. Fast forward fifteen years. I was the flute section leader in band, and had the responsibility of seventeen young floutists for the last month of a very hot summer. Texas summers stay in the upper 90s and low 100s most of the time, and August is the hottest part of the summer. High humidity makes it almost unbearable, and we went through a ritual at the start of summer band practice every year, explaining the need to stay hydrated, not lock your knees when standing outside, and take frequent breaks. The freshmen every year absorbed this with wide-eyed emotions that bordered fear, but us old hands knew it generally wasn't a problem. Growing up in this climate, most of us get used to the heat. One afternoon, the entire band was on the field in marching formation, standing at attention. Some knuckleheads in the percussion section were making noise, and the band director kept us standing at attention, waiting for our Gatorade break, until they stopped. I began to feel woozy, and checked to see if my knees were locked. They weren't. Flocks of black crows clouded my vision, my knees buckled, and I woke up an undetermined time later looking up at the impossibly blue sky. This was the genesis of a thirteen year search for answers. The first response was from my band director. He cautioned me again about staying hydrated and not locking my knees, and pooh-poohed me when I said I hadn't locked my knees. My section stared at me in bewilderment. Some of the kids snickered and said "Oh, she's faking it. She just wanted to get Gatorade before the rest of us got it." When I told my mother what had happened, she recalled times when she was pregnant when she would pass out, particularly while grocery shopping. She wrote it off as something of a rite of passage. I continued to pass out, however. The first thing I noticed was that I was hot when the lights would go out. So I tried to stay cooler, but my position in the band forced me to set an example and not "wimp out" and run inside the second sweat started to run down my face. The morning calesthenics were getting more and more difficult to get through. The typical light-headedness I would experience during exercise became full-out nausea and fainting. Four or five faints later, my mother decided to find out what was going on. She took me to the family doctor, who had delivered me and was a family friend as well. He shook his head in befuddlement and referred us to a neurological facility for testing. The first suspect was epilepsy, since my sister had had the juvenile form for the first ten years of her life. But an EEG returned a normal reading. They wired me with a 24-hour EEG and sent me home. The results, again, were normal. So, they took a three-pronged approach. I was to fast from 8 pm for a glucose tolerance test and stay up all night for a sleep-deprived EEG. The next day, those two tests and a CAT scan revealed nothing abnormal. The doctors told my mother that I was looking for attention and that by taking me to the doctor, I was getting rewarded for it. They said there was absolutely nothing wrong with me physically and that she should put me back out on the summer band field and let me build up some more heat tolerance. So, she did. I continued to faint throughout the marching season. I'm not sure my mother believed the doctors, though. She went to every game with me, making sure I had cold rags and Gatorade to help revive me when I did faint. The band finally realized I wasn't faking it when I passed out in the middle of a song during halftime. We took precautions to try and stop the fainting, but they didn't work, so we simply treated the results with cool water and rest after a faint. At some point, I stopped passing out. I thought the problem had gone away, and so did my mother. But when I got pregnant at the age of 17, I began experiencing symptoms again. It was then that I finally noticed that my heart rate was extraordinarily high. One day in a class, I took my pulse when I was feeling dizzy, and sitting in the chair, my pulse was over 120. I knew something wasn't right. Armed with this new information, I visited a cardiologist. More tests followed - an EKG, an ECG, and a Holter monitor that would record events. The cardiologists found nothing wrong, but did note the pulse was too fast. They told me I was just emotional, due to the pregnancy, and that I should try yoga to calm myself down. After getting no validation from those doctors, I decided so many doctors couldn't be wrong, and just lived with it. I stayed as cool as possible, and stayed off my feet or walked around when I felt bad. After the birth of my daughter, it went away again and stayed gone for two years. However, a nasty divorce and drastic lifestyle change prompted a resumption of symptoms, and I was flush with dizziness, light-headedness, and tachycardia. I noticed my collarbones would hurt when I got hot or drank alcohol on an empty stomach. Nobody I talked to had ever experienced this. I also discovered that my symptoms were at their worst when I was standing still. One afternoon, I was standing in line at the post office. Accustomed to taking my pulse frequently and sitting down when I felt bad, I no longer worried about falling and hurting myself. But that afternoon in the post office, I recorded my first heart rate over 160. The swarms of crows were back, and I woke up on the floor with concerned faces staring back at me. I went to the emergency room immediately. The emergency nurse took my pulse while I was laying on the examining table. Naturally, it was a normal 70 beats per minute. She screwed up her face in confusion and I told her it only happened when I stood up. She apparently did not believe me, and all I got for my time was a half-hearted order from the physician to see a cardiologist. Having been down that road, I was reluctant, but followed his instructions. I began to have migraines at this point, but did not connect them to the tachycardia. The cardiologist set me up with yet another Holter monitor, and when the results came back normal, but fast, he told me I was just too stressed, and needed to see a psychiatrist and get on a mood stabilizer. Frustrated and certain he was wrong, I ignored his suggestion and left. I developed my own methods of dealing with POTS. I stopped going anywhere that I might have to stand in line, or get too hot. When I felt bad, people would notice. In answer to their concern, I told them "I just have this weird heart thing nobody can figure out. I'm ok. It's no big deal." But inside, I yearned for some kind of answer. I had spells on and off for the next several years, most of which were largely ignored. I stopped paying attention to it, and sitting down when I was dizzy became an unconscious reaction. Then I got a job that had excellent insurance. At first, I didn't have any symptoms, and so did not pursue answers. One day I was outside smoking a cigarette with my best friend, a guy who has an insatiable need for answers. The two of us discussed my problem repeatedly, and he urged me to seek help again. He worried that I would pass out when I was alone again, and hurt myself. At his insistence, I visited a cardiologist again. This time I was armed with more information. I knew what situations provoked my symptoms, and I had typical heart rate information ready. He examined me for five minutes, and promptly said "I know what's wrong with you." The relief I felt was unimaginable. Someone actually acknowledged I wasn't crazy! Someone knows! He said "You have inappropriate sinus tachycardia. Short of surgery, which doesn't always work, there's nothing we can do. You just have to live with it." Relieved, but frustrated, I turned to the Internet for answers. Now that I had a name for this "weird heart thing," I could find out if he was right about treatment. He was, unfortunately. I found many stories from other people who had found no relief from their symptoms. The good news was that it was not fatal. At some point, my symptoms went away again, and I lived a relatively normal life. Last October, all that changed. My father in law, who I was close to, informed us the weekend after Labor Day that he had lung cancer and was undergoing chemotherapy. Two weeks later, he began coughing up blood and was transported to MD Anderson, where he collapsed. My husband and I immediately drove to MD Anderson, which is two hours away. His father never regained consciousness, but for a week, we rode the interminable ride of the Cancer Center's ICU. Good news would come, then bad news, and our emotions cycled wildly, waiting for answers. Finally, he declined and passed away. My husband and I helped his stepmother make funeral arrangements and get her back home and settled in their home. The stress of that event brought on this latest episode. The symptoms seemed to be getting worse, my heart would race faster, and I discovered new situations that would bring the tachycardia to a fever pitch. Frustrated again, I turned back to the Internet. Surely, there was new information. And I found it. In an article on About.com, the author noted a large number of people who had been misdiagnosed with inappropriate sinus tachycardia really were affected by a problem with the autonomic nervous system. The article contained a link to the National Dysautonomia Research Foundation. At NDRF's website, I found loads of valuable information. Through reading their material, I became convinced that my problem was postural orthostatic tachycardia syndrome. NDRF mailed me papers that a Dr. Grubb had written. Dr. Grubb proved to have a pretty good handle on POTS and the parent disorder: dysautonomia. I wanted to have a tilt table test run, so I took the medical abstracts and papers that NDRF sent me to my doctor - the same one who had seen me shortly after this had started. He ordered a tilt table test. According to the cardiologist who ran the test, I tested "so positive it's not even funny." He diagnosed me with POTS as well as neurocardiogenic syncope (NCS). At 28, I had finally ended my quest for answers, but my journey for a treatment had just begun. Our first line of attack was beta blockers. They helped considerably, but I was allergic to three in a row. Florinef, a steroid that would theoretically increase blood pressure, did not work, either. I am currently taking Midodrine, a vasoconstrictor which will help increase blood pressure, and it has prevented me from passing out. But the tachycardia remains unaddressed. I am now armed with a cardiologist who not only understands more about dysautonomia than 99% of the doctors in the country, but is also willing to experiment, listen, and accept research I've done on my own. Together, we will conquer this illness, and I won't have to see concerned looks or give enigmatic answers to questions about my health.

By Daniel Jacoby June 2002 I: Pre-Dysautonomia It was mid-1996. I'd just celebrated my 36th birthday. I had been in business for myself for almost 10 years and had a fantastic wife and daughter. Things in my professional and personal life were as good as they could be. My current company, which had only opened for business 3 short years earlier, was being bought by a public company and I would soon be able to take a few months off for a well deserved rest. Little did I know what the next few years would hold for me. About a month into my 'rest' period, I noticed a very small lump on the lower right side of my neck. I walked into the Medical College of Virginia's Cancer Center on a Tuesday and asked if a surgeon was available to give me an opinion about the lump. As my wife and I stood in the lobby, the surgeon immediately identified the lump as thyroid cancer and asked when I would like to have it removed. I jokingly said, "How about tomorrow?", to which he replied, "fine". Before I could begin to worry about my newly-diagnosed health status, I was getting my pre-op testing done, stopping by the lawyers to make sure my will was in order and waking up at 4am Wednesday for my scheduled 6am surgery. Everything went fine. After a couple of weeks of recovery, they scanned me for remnants of the cancer but found nothing. This was a bonus, as I would not have to go through any radiation therapy. I had really dodged a bullet and had a fresh new perspective on life. With my new lease on life, I started doing things I had wanted to do for years but just never took the first step. I started snow skiing as often as I could and my skill increased beyond my expectations. It was this new love for life that would ironically lead to what would become a fight that made my thyroid cancer battle look like a pillow fight. I was on a ski trip with some high school friends in Steamboat Springs, Colorado, in February of 1998. I headed off on my own to the top of the mountain and found a great, slow paced slope that would provide almost an hour of leisurely skiing before I got back to the bottom of the slopes. It was to turn out to be anything but leisure. About halfway down the mountain I noticed a young inexperienced snowboarder at very high speed closing in on me. He was completely out of control and before I could even consider a way out, I was hit hard and knocked face first into the snow. My head made a violent motion backwards when my chin hit solid ground. At the time, I was able to shake it off and even continued skiing for the remainder of my visit. A month would pass before I would begin to see the signs of damage that had been done in the accident. During March of 1998, I began to experience pain in my left arm, shoulder and neck. Not long after that, my lower back and right leg began to hurt a great deal. The pain became so great, that I visited a Neurosurgeon at the Medical College of Virginia, whom I still consider to be one of the best in the world. Following an MRI of my spine, he recommended against surgery because of my age and suggested that I try physical therapy instead. It took more than a year and a half, but the pain began to subside by the beginning of 2000. Unfortunately, I was about to start experiencing symptoms that I could not begin to explain. II: Early Symptoms As the pain in my arm, neck and leg subsided, I began to experience strange spasms in my throat, about every three weeks, that made me feel like I was choking. These episodes usually happened late at night or during sporting or other crowded public events. In September of 2000, I visited an Ear, Nose, and Throat specialist who diagnosed my problem as acid reflux and prescribed a daily dose of Prilosec. These intermittent episodes continued and, just before Christmas, I had an added symptom - the entire right side of my neck would be in severe pain and would often spasm for minutes at a time. At this point, I had no idea what was happening to me or in whom to turn. I just tried to relax and things seemed to stay in check. Until... III: Sudden Onset On Tuesday, January 16th, 2001, I was working about 130 miles from home on a project that required I keep a corporate apartment and be away from my family for 3 or 4 days each week. The weekend before I had experienced mild flu-like symptoms. Monday, I had an argument with a client whose business was doing poorly who refused to pay his invoices. Tuesday started with a poor nights sleep, a walk through icy snow to work and mounting pressure at the office. At 11am I had an instant major episode in my office which included a choking sensation, heat rush, dizziness, nausea and what felt like the flu being poured into my body. I did what I could to stand, did not even shut off my computer or grab my brief case and slowly trudged back to my apartment. I had no idea what was happening to me. Lying down didn't help. A warm shower didn't help. I felt myself feeling close to passing out and propped myself upright on the sofa pillows. I held on for a few hours while taking in as much water and Gatorade as I could. I finally made it to bed, but was alone in the apartment far from home with nothing but cable TV and a cell phone. I remained in bed through four sleepless nights before mustering enough strength to drive the 3 hours it would take to get home. Within 24 hours of arriving home, I found myself at the local ER close to syncope at 3am. They diagnosed me with the flu, gave me some potassium tablets and sent me home. I saw my PCP, who also made the same diagnosis. Knowing there was something more serious going on, I went to other doctors until I found one who actually did a "poor man's" tilt table test which showed my elevated heart rate from the lying down, sitting and standing positions. This was a major breakthrough, as I was soon able to investigate the world of Orthostatic Intolerance via the Internet and begin to find others that had very similar stories and symptoms to which to relate. I was also admitted to the hospital for EKGs, an Echocardiogram and a Tilt Table test IV: The Darkest Days Even though I had been diagnosed relatively early on, my worst days lay ahead. No one in my hometown knew much about treating the symptoms of my syndrome. I became so bedridden over the coming months that I couldn't even lift my head off the pillow or move my arms without triggering my tachycardia. I also began to slowly lose my appetite and lost 50 pounds during a 3 month period. From late February through June, I was completely debilitated. With an upcoming appointment to the POTS Promised Land of Toledo, Ohio, to see the famed Dr. Blair Grubb, I had a feeding tube installed so that I could regain some of my weight and get nutrients for the trip. Dr. Grubb was very thorough and I left knowing even more about what was happening to me than ever. My family life and business life were still on a downturn, for obvious reasons, and money was becoming an added worry for our family. V: Some Improvement Continuing with the feeding tube, I slowly began to regain some of my strength and began slow physical therapy in August 2001. By the end of the year, I was able to slowly move around the house and work for short periods. I still could not ingest food orally and continued to have throat spasms that made me feel like I was choking. Before I knew it, I was taking 10mg of Ativan every day to help relax my throat muscles. While I was no longer bedridden, I still found myself mostly house ridden. I also started learning more about Cervical Stenosis and how some patients with Dysautonomia found improvement through surgery, by having pressure on the cervical spine relieved. I was feeling optimistic about the future and the local newspaper even did a story on my situation (http://Eye-Q.com/news.asp), which probably became the first ever use of the words "autonomic nervous system" in any paper's business section. In April of 2002, I followed the stories of several patients of Dr. Dan S. Heffez of the Chicago Institute of Neurosurgery and Neuroresearch, and decided to send my MRIs for his evaluation. On April 16th, I began a 2-day evaluation at CINN. While Dr. Heffez did not feel that my stenosis (compression of the spine) was as severe as many others he had seen, he sent me home with a custom fitted soft cervical collar and asked that I pay close attention to any changes in my symptoms. I found the collar to be a great help, with my neck and shoulder pain relieved. I was also able to begin sipping on soup broth and eventually began tasting pasta, mashed potatoes, scrambled eggs and even grits! I could supplement whatever I could eat with the feeding tube and began gaining weight back at a steady pace. Six weeks after my evaluation at CINN, I called Dr. Heffez and requested a surgery date, which was to be June 6th (D-Day Anniversary!). The day before the procedure, Dr. Heffez called and suggested doing a bone harvest from my hip so that he would not have to use any metal, which would be stiffer and could put more pressure on the surrounding healthy discs. I agreed, knowing that my surgery would last longer and my recovery period would be extended and more painful. Surgery lasted well over 5 hours but when I awoke, my hands and feet were warm for the first time in over a year and a half. I felt like I was hit by a truck, but knew I had made the right call. With a new found hope, and days and weeks of healing ahead, I am confident that I will improve and find relief from at least some of my remaining symptoms. While the anesthesia did a number on my digestive system, I am slowly gaining back some of my digestive functionality and can't wait to taste scrambled eggs again! Over the coming months, I will post my progress at http://Eye-Q.com/POTS/. I know my business can wait, my wife and daughter are still by my side, and my health will continue to improve with time. More Information: http://www.CINN.orgThe Chicago Institute of Neurosurgery and Neuroresearch http://Eye-Q.com/pots/My personal online medical journal http://Eye-Q.com/news.aspMay 14th, 2002 article in the Richmond Times-Dispatch

By Daniel Jacoby June 2002 I: Pre-Dysautonomia It was mid-1996. I'd just celebrated my 36th birthday. I had been in business for myself for almost 10 years and had a fantastic wife and daughter. Things in my professional and personal life were as good as they could be. My current company, which had only opened for business 3 short years earlier, was being bought by a public company and I would soon be able to take a few months off for a well deserved rest. Little did I know what the next few years would hold for me. About a month into my 'rest' period, I noticed a very small lump on the lower right side of my neck. I walked into the Medical College of Virginia's Cancer Center on a Tuesday and asked if a surgeon was available to give me an opinion about the lump. As my wife and I stood in the lobby, the surgeon immediately identified the lump as thyroid cancer and asked when I would like to have it removed. I jokingly said, "How about tomorrow?", to which he replied, "fine". Before I could begin to worry about my newly-diagnosed health status, I was getting my pre-op testing done, stopping by the lawyers to make sure my will was in order and waking up at 4am Wednesday for my scheduled 6am surgery. Everything went fine. After a couple of weeks of recovery, they scanned me for remnants of the cancer but found nothing. This was a bonus, as I would not have to go through any radiation therapy. I had really dodged a bullet and had a fresh new perspective on life. With my new lease on life, I started doing things I had wanted to do for years but just never took the first step. I started snow skiing as often as I could and my skill increased beyond my expectations. It was this new love for life that would ironically lead to what would become a fight that made my thyroid cancer battle look like a pillow fight. I was on a ski trip with some high school friends in Steamboat Springs, Colorado, in February of 1998. I headed off on my own to the top of the mountain and found a great, slow paced slope that would provide almost an hour of leisurely skiing before I got back to the bottom of the slopes. It was to turn out to be anything but leisure. About halfway down the mountain I noticed a young inexperienced snowboarder at very high speed closing in on me. He was completely out of control and before I could even consider a way out, I was hit hard and knocked face first into the snow. My head made a violent motion backwards when my chin hit solid ground. At the time, I was able to shake it off and even continued skiing for the remainder of my visit. A month would pass before I would begin to see the signs of damage that had been done in the accident. During March of 1998, I began to experience pain in my left arm, shoulder and neck. Not long after that, my lower back and right leg began to hurt a great deal. The pain became so great, that I visited a Neurosurgeon at the Medical College of Virginia, whom I still consider to be one of the best in the world. Following an MRI of my spine, he recommended against surgery because of my age and suggested that I try physical therapy instead. It took more than a year and a half, but the pain began to subside by the beginning of 2000. Unfortunately, I was about to start experiencing symptoms that I could not begin to explain. II: Early Symptoms As the pain in my arm, neck and leg subsided, I began to experience strange spasms in my throat, about every three weeks, that made me feel like I was choking. These episodes usually happened late at night or during sporting or other crowded public events. In September of 2000, I visited an Ear, Nose, and Throat specialist who diagnosed my problem as acid reflux and prescribed a daily dose of Prilosec. These intermittent episodes continued and, just before Christmas, I had an added symptom - the entire right side of my neck would be in severe pain and would often spasm for minutes at a time. At this point, I had no idea what was happening to me or in whom to turn. I just tried to relax and things seemed to stay in check. Until... III: Sudden Onset On Tuesday, January 16th, 2001, I was working about 130 miles from home on a project that required I keep a corporate apartment and be away from my family for 3 or 4 days each week. The weekend before I had experienced mild flu-like symptoms. Monday, I had an argument with a client whose business was doing poorly who refused to pay his invoices. Tuesday started with a poor nights sleep, a walk through icy snow to work and mounting pressure at the office. At 11am I had an instant major episode in my office which included a choking sensation, heat rush, dizziness, nausea and what felt like the flu being poured into my body. I did what I could to stand, did not even shut off my computer or grab my brief case and slowly trudged back to my apartment. I had no idea what was happening to me. Lying down didn't help. A warm shower didn't help. I felt myself feeling close to passing out and propped myself upright on the sofa pillows. I held on for a few hours while taking in as much water and Gatorade as I could. I finally made it to bed, but was alone in the apartment far from home with nothing but cable TV and a cell phone. I remained in bed through four sleepless nights before mustering enough strength to drive the 3 hours it would take to get home. Within 24 hours of arriving home, I found myself at the local ER close to syncope at 3am. They diagnosed me with the flu, gave me some potassium tablets and sent me home. I saw my PCP, who also made the same diagnosis. Knowing there was something more serious going on, I went to other doctors until I found one who actually did a "poor man's" tilt table test which showed my elevated heart rate from the lying down, sitting and standing positions. This was a major breakthrough, as I was soon able to investigate the world of Orthostatic Intolerance via the Internet and begin to find others that had very similar stories and symptoms to which to relate. I was also admitted to the hospital for EKGs, an Echocardiogram and a Tilt Table test IV: The Darkest Days Even though I had been diagnosed relatively early on, my worst days lay ahead. No one in my hometown knew much about treating the symptoms of my syndrome. I became so bedridden over the coming months that I couldn't even lift my head off the pillow or move my arms without triggering my tachycardia. I also began to slowly lose my appetite and lost 50 pounds during a 3 month period. From late February through June, I was completely debilitated. With an upcoming appointment to the POTS Promised Land of Toledo, Ohio, to see the famed Dr. Blair Grubb, I had a feeding tube installed so that I could regain some of my weight and get nutrients for the trip. Dr. Grubb was very thorough and I left knowing even more about what was happening to me than ever. My family life and business life were still on a downturn, for obvious reasons, and money was becoming an added worry for our family. V: Some Improvement Continuing with the feeding tube, I slowly began to regain some of my strength and began slow physical therapy in August 2001. By the end of the year, I was able to slowly move around the house and work for short periods. I still could not ingest food orally and continued to have throat spasms that made me feel like I was choking. Before I knew it, I was taking 10mg of Ativan every day to help relax my throat muscles. While I was no longer bedridden, I still found myself mostly house ridden. I also started learning more about Cervical Stenosis and how some patients with Dysautonomia found improvement through surgery, by having pressure on the cervical spine relieved. I was feeling optimistic about the future and the local newspaper even did a story on my situation (http://Eye-Q.com/news.asp), which probably became the first ever use of the words "autonomic nervous system" in any paper's business section. In April of 2002, I followed the stories of several patients of Dr. Dan S. Heffez of the Chicago Institute of Neurosurgery and Neuroresearch, and decided to send my MRIs for his evaluation. On April 16th, I began a 2-day evaluation at CINN. While Dr. Heffez did not feel that my stenosis (compression of the spine) was as severe as many others he had seen, he sent me home with a custom fitted soft cervical collar and asked that I pay close attention to any changes in my symptoms. I found the collar to be a great help, with my neck and shoulder pain relieved. I was also able to begin sipping on soup broth and eventually began tasting pasta, mashed potatoes, scrambled eggs and even grits! I could supplement whatever I could eat with the feeding tube and began gaining weight back at a steady pace. Six weeks after my evaluation at CINN, I called Dr. Heffez and requested a surgery date, which was to be June 6th (D-Day Anniversary!). The day before the procedure, Dr. Heffez called and suggested doing a bone harvest from my hip so that he would not have to use any metal, which would be stiffer and could put more pressure on the surrounding healthy discs. I agreed, knowing that my surgery would last longer and my recovery period would be extended and more painful. Surgery lasted well over 5 hours but when I awoke, my hands and feet were warm for the first time in over a year and a half. I felt like I was hit by a truck, but knew I had made the right call. With a new found hope, and days and weeks of healing ahead, I am confident that I will improve and find relief from at least some of my remaining symptoms. While the anesthesia did a number on my digestive system, I am slowly gaining back some of my digestive functionality and can't wait to taste scrambled eggs again! Over the coming months, I will post my progress at http://Eye-Q.com/POTS/. I know my business can wait, my wife and daughter are still by my side, and my health will continue to improve with time. More Information: http://www.CINN.orgThe Chicago Institute of Neurosurgery and Neuroresearch http://Eye-Q.com/pots/My personal online medical journal http://Eye-Q.com/news.aspMay 14th, 2002 article in the Richmond Times-Dispatch

By Jolene August 2005 I have been grateful for the personal stories on the website and find I can recognize a little of myself in all of them. I thought it was about time I provided mine. I cannot pinpoint the exact time or day when things started to change in my life due to POTS. I am 30 and married with 3 school aged children. In 1998 I had dental treatment and was overdosed on diazepam with 2 ampoules through IV, which was too much for my very slight body weight! My breathing was compromised, an ambulance was called and adrenaline administered. I was admitted to a hospital overnight and discharged. Just a note, before I go further, with all of my pregnancies I have suffered extreme hyperemesis which I recently read somewhere on this site is common with POTS. When I think back on it now, I was suffering POTS symptoms for many years before finally stepping back and realizing something was not right with me. When you are young and busy with babies, it is easy to forget about your own health and ignore niggling symptoms which can easily be put down to tiredness from sleepless nights and having a young family. Another thing is we get used to feeling the way we do, and how do you define what is "normal"? You should see my GP's notes! In the end, I would be in tears saying something was wrong...but what. I know that I have always been very thin, and no matter how much I eat I can not put on weight. I always felt good when pregnant (despite the hyperemesis!) due to the fact I had some meat on my bones! It started with ectopic beats - flip flop heartbeats...and a racing pulse. That was my first indication something was not right. Once again, with a busy life and young babies, I ignored it. I would often, sometimes weekly, get sick; and I thought I was not getting enough sleep or eating the right foods. My HR sits around 100-120 bpm, and when I am busy it can get up to and above 180 bpm. My BP is all over the show, and I have given up wondering what it is now. A few years ago, I was referred to Dr Jardine, based at Christchurch Hospital. He diagnosed me with POTS. Due to my ability at that time to manage/cope with POTS, no treatment was given. I find some days I am worse then others. I can become tearful and frustrated on my bad days and find it hard to know if it is related to POTS or just an off day. Apart from that one day with the cardiologist, I have had no management of my condition. Just lately I have found things have become much worse. I initially did not even consider it was POTS, but thought I had some terminal illness or I was losing my mind. Interesting to note that for as long as I can remember, I always sit down in the shower, as it is where I am most comfortable, and I feel less off balance. Fatigue has become worse even though my youngest has started school. Where is the logic in that? I feel more light-headed and dizzy even when just sitting; I feel a see-saw effect which is very scary. I am not moving bodily, but my head is! My blood pressure is low, even on Florinef. We recently took a plane trip as a family, and I NEVER drink, but I felt so bad that I cried and asked for a double whiskey! Thinking back on this, it was POTS! I never considered it then. The downwards pressure was tremendous, and I really felt like I was going to pass out. It was to the point on take off that I could NOT lift my head up from my chest. I also feel nausea most days and will wake up and dry retch at least once weekly. I cannot eat mince, cheese or anything fatty/spicy, or otherwise after a couple of hours of stomach cramps/pain I am physically sick. I have lost my appetite over the past six months and don't want to eat, but I do it out of necessity. This is sad as I used to have such a healthy appetite, and I could eat my husband under the table at buffets! Lately, I have had tremendous pain in my legs (this is a new symptom for me) from hips down. It is very bad at night. I am petrified of developing CFS, as I know this can come on due to POTS. I simply do not have the time to be unwell! It scares me. The house can be nice and tidy one day and a mess the next. What do I do? I am angry and frustrated. I feel old before my time. These are meant to be my best days. I remember when I was younger and the kids were little my house was perfect. Not an item of clothing was to be seen, not a dish, not a toy, everything had its place, and I was the model mom. I sometimes wonder if I contributed to my POTS due to my super-mom mentality! You have to wonder! I do not like taking medication of any sort, but lately I feel willing to try anything. I feel my condition has certainly worsened since my diagnosis and have an appointment this coming week with my cardiologist, as I am feeling so bad. Today is an off day, and what prompted me to write this is that I am so damned TIRED!! I want my life BACK!! I feel for all of you and the hundreds of others out there who have yet to be diagnosed with POTS and who are possibly, like I was, wondering what the hell was wrong with them. Strength to all :) xxx Jolene

By Jolene August 2005 I have been grateful for the personal stories on the website and find I can recognize a little of myself in all of them. I thought it was about time I provided mine. I cannot pinpoint the exact time or day when things started to change in my life due to POTS. I am 30 and married with 3 school aged children. In 1998 I had dental treatment and was overdosed on diazepam with 2 ampoules through IV, which was too much for my very slight body weight! My breathing was compromised, an ambulance was called and adrenaline administered. I was admitted to a hospital overnight and discharged. Just a note, before I go further, with all of my pregnancies I have suffered extreme hyperemesis which I recently read somewhere on this site is common with POTS. When I think back on it now, I was suffering POTS symptoms for many years before finally stepping back and realizing something was not right with me. When you are young and busy with babies, it is easy to forget about your own health and ignore niggling symptoms which can easily be put down to tiredness from sleepless nights and having a young family. Another thing is we get used to feeling the way we do, and how do you define what is "normal"? You should see my GP's notes! In the end, I would be in tears saying something was wrong...but what. I know that I have always been very thin, and no matter how much I eat I can not put on weight. I always felt good when pregnant (despite the hyperemesis!) due to the fact I had some meat on my bones! It started with ectopic beats - flip flop heartbeats...and a racing pulse. That was my first indication something was not right. Once again, with a busy life and young babies, I ignored it. I would often, sometimes weekly, get sick; and I thought I was not getting enough sleep or eating the right foods. My HR sits around 100-120 bpm, and when I am busy it can get up to and above 180 bpm. My BP is all over the show, and I have given up wondering what it is now. A few years ago, I was referred to Dr Jardine, based at Christchurch Hospital. He diagnosed me with POTS. Due to my ability at that time to manage/cope with POTS, no treatment was given. I find some days I am worse then others. I can become tearful and frustrated on my bad days and find it hard to know if it is related to POTS or just an off day. Apart from that one day with the cardiologist, I have had no management of my condition. Just lately I have found things have become much worse. I initially did not even consider it was POTS, but thought I had some terminal illness or I was losing my mind. Interesting to note that for as long as I can remember, I always sit down in the shower, as it is where I am most comfortable, and I feel less off balance. Fatigue has become worse even though my youngest has started school. Where is the logic in that? I feel more light-headed and dizzy even when just sitting; I feel a see-saw effect which is very scary. I am not moving bodily, but my head is! My blood pressure is low, even on Florinef. We recently took a plane trip as a family, and I NEVER drink, but I felt so bad that I cried and asked for a double whiskey! Thinking back on this, it was POTS! I never considered it then. The downwards pressure was tremendous, and I really felt like I was going to pass out. It was to the point on take off that I could NOT lift my head up from my chest. I also feel nausea most days and will wake up and dry retch at least once weekly. I cannot eat mince, cheese or anything fatty/spicy, or otherwise after a couple of hours of stomach cramps/pain I am physically sick. I have lost my appetite over the past six months and don't want to eat, but I do it out of necessity. This is sad as I used to have such a healthy appetite, and I could eat my husband under the table at buffets! Lately, I have had tremendous pain in my legs (this is a new symptom for me) from hips down. It is very bad at night. I am petrified of developing CFS, as I know this can come on due to POTS. I simply do not have the time to be unwell! It scares me. The house can be nice and tidy one day and a mess the next. What do I do? I am angry and frustrated. I feel old before my time. These are meant to be my best days. I remember when I was younger and the kids were little my house was perfect. Not an item of clothing was to be seen, not a dish, not a toy, everything had its place, and I was the model mom. I sometimes wonder if I contributed to my POTS due to my super-mom mentality! You have to wonder! I do not like taking medication of any sort, but lately I feel willing to try anything. I feel my condition has certainly worsened since my diagnosis and have an appointment this coming week with my cardiologist, as I am feeling so bad. Today is an off day, and what prompted me to write this is that I am so damned TIRED!! I want my life BACK!! I feel for all of you and the hundreds of others out there who have yet to be diagnosed with POTS and who are possibly, like I was, wondering what the hell was wrong with them. Strength to all :) xxx Jolene

By Jim and Chrys Hochstetler November 2001 Jeff was totally disabled, wheelchair-bound and unable to attend high school due to an undiagnosed condition. We had been to 40 different doctors, driven many miles to such places as The Cleveland Clinic, Columbus Children’s Hospital, Medical College of Ohio and The Mayo Clinic. One group of cardiologists decided a pericardiectomy was the solution, but the stress of that surgery only worsened his condition. Labels such as Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), and dysautonomia, became diagnoses of exclusion as doctors gave up looking for a treatable cause. Some were convinced that the problem was “all in his head." Brain/spine MRIs had revealed the presence of a Chiari Malformation, the herniation of the cerebellar tonsils down into the spinal canal. This anomaly had been detected in 1996, six months into Jeff’s illness, and was obvious on two subsequent MRIs, but doctors saw it as an insignificant finding and chose not to tell us it was there. After reading about the possible link between this deformity and Jeff’s condition, we finally asked a local neurologist if Jeff might have this malformation. When he confirmed the presence of a Chiari Malformation, he was quick to add that it was not responsible for his illness, and called it a “red herring.” But parental love leaves no stone unturned in the search for a child’s wellness. After nearly four years of complete debilitation, we prayerfully sought the opinion of Dr. Jon Weingart. We had found his name on the Internet, as one who surgically corrects the condition with some pretty remarkable outcomes. Taking our very sick 17-year-old son, along with MRI films, on a nine-hour van trip to Baltimore was more than a little intimidating. We had no idea how this top-notch neurosurgeon would react to our speculation that perhaps the Chiari Malformation was the culprit in our son’s "mystery" illness. Dr. Weingart was the first doctor to ever show us the abnormality on the MRIs. After meeting with us for barely thirty minutes, he concluded that Jeff might indeed benefit from the decompression surgery. “As sick as he is, and as obvious as the Chiari is, I believe the surgery could definitely improve the quality of his life. I never try to persuade anyone to have this surgery, but in your son’s case it would be wrong not to do it. He at least deserves the chance to get well.” On Oct. 15, 1999, Jeff underwent a suboccipital craniectomy, C-1 laminectomy with bovine dural patch. The post-op pain was very intense, but the pain management team at JHH was superb in giving him the much needed relief. Dr Weingart told us that improvements would be extremely slow, and in fact there may not be any for at least two to three months. But even while still in the hospital, we began to see slight improvements in Jeff’s condition. Hands and feet were warm for the first time in four years, and his eyes, which had been very drooped, began to open wider. Four months after the surgery, Jeff began to take a few steps during his physical therapy session. The therapist's comments indicated that Jeff’s muscles were beginning to show signs of improved tone and increased strength. His weak, frail voice grew stronger, and lights and noise were once again tolerable. Heart rates and blood pressures normalized. He began spending more time out of bed, as his energy level increased. He progressed from wheelchair to walker to forearm crutches to unassisted walking to treadmill exercise. There were tears among the therapists, who having once assisted with passive range-of-motion pool therapy, were now witnessing restored health to his lifeless body. It has now been two years since the surgery, and Jeff once again has a life. He drives, takes walks, rides his bike, and has friends. Having missed all four years of his high school brought about the tremendous task of somehow making up those credits. Since he no longer fit in the age group of those students at school, he elected to make up those years through post- secondary options at the local Ohio State University Academy. Amazing as it may seem, Jeff is now ranked number “one” in the senior class due to his academic achievement at the college level. His greatest desire it to have the opportunity to attend a reputable college, and get an education that will allow him to be of service to others. Words are inadequate to express our heartfelt gratitude for Dr. Weingart’s skill and compassion. He saw what other doctors did not see, did what others would not do, and gave hope when others gave up. By having the courage to perform a surgery that was somewhat controversial, because he felt in his heart it was the right thing to do, a young man now has restored health and hope for a future. Thank you, Dr. Weingart for being God’s hands in fulfilling Jeff’s scripture of hope: For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

By Jim and Chrys Hochstetler November 2001 Jeff was totally disabled, wheelchair-bound and unable to attend high school due to an undiagnosed condition. We had been to 40 different doctors, driven many miles to such places as The Cleveland Clinic, Columbus Children’s Hospital, Medical College of Ohio and The Mayo Clinic. One group of cardiologists decided a pericardiectomy was the solution, but the stress of that surgery only worsened his condition. Labels such as Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), and dysautonomia, became diagnoses of exclusion as doctors gave up looking for a treatable cause. Some were convinced that the problem was “all in his head." Brain/spine MRIs had revealed the presence of a Chiari Malformation, the herniation of the cerebellar tonsils down into the spinal canal. This anomaly had been detected in 1996, six months into Jeff’s illness, and was obvious on two subsequent MRIs, but doctors saw it as an insignificant finding and chose not to tell us it was there. After reading about the possible link between this deformity and Jeff’s condition, we finally asked a local neurologist if Jeff might have this malformation. When he confirmed the presence of a Chiari Malformation, he was quick to add that it was not responsible for his illness, and called it a “red herring.” But parental love leaves no stone unturned in the search for a child’s wellness. After nearly four years of complete debilitation, we prayerfully sought the opinion of Dr. Jon Weingart. We had found his name on the Internet, as one who surgically corrects the condition with some pretty remarkable outcomes. Taking our very sick 17-year-old son, along with MRI films, on a nine-hour van trip to Baltimore was more than a little intimidating. We had no idea how this top-notch neurosurgeon would react to our speculation that perhaps the Chiari Malformation was the culprit in our son’s "mystery" illness. Dr. Weingart was the first doctor to ever show us the abnormality on the MRIs. After meeting with us for barely thirty minutes, he concluded that Jeff might indeed benefit from the decompression surgery. “As sick as he is, and as obvious as the Chiari is, I believe the surgery could definitely improve the quality of his life. I never try to persuade anyone to have this surgery, but in your son’s case it would be wrong not to do it. He at least deserves the chance to get well.” On Oct. 15, 1999, Jeff underwent a suboccipital craniectomy, C-1 laminectomy with bovine dural patch. The post-op pain was very intense, but the pain management team at JHH was superb in giving him the much needed relief. Dr Weingart told us that improvements would be extremely slow, and in fact there may not be any for at least two to three months. But even while still in the hospital, we began to see slight improvements in Jeff’s condition. Hands and feet were warm for the first time in four years, and his eyes, which had been very drooped, began to open wider. Four months after the surgery, Jeff began to take a few steps during his physical therapy session. The therapist's comments indicated that Jeff’s muscles were beginning to show signs of improved tone and increased strength. His weak, frail voice grew stronger, and lights and noise were once again tolerable. Heart rates and blood pressures normalized. He began spending more time out of bed, as his energy level increased. He progressed from wheelchair to walker to forearm crutches to unassisted walking to treadmill exercise. There were tears among the therapists, who having once assisted with passive range-of-motion pool therapy, were now witnessing restored health to his lifeless body. It has now been two years since the surgery, and Jeff once again has a life. He drives, takes walks, rides his bike, and has friends. Having missed all four years of his high school brought about the tremendous task of somehow making up those credits. Since he no longer fit in the age group of those students at school, he elected to make up those years through post- secondary options at the local Ohio State University Academy. Amazing as it may seem, Jeff is now ranked number “one” in the senior class due to his academic achievement at the college level. His greatest desire it to have the opportunity to attend a reputable college, and get an education that will allow him to be of service to others. Words are inadequate to express our heartfelt gratitude for Dr. Weingart’s skill and compassion. He saw what other doctors did not see, did what others would not do, and gave hope when others gave up. By having the courage to perform a surgery that was somewhat controversial, because he felt in his heart it was the right thing to do, a young man now has restored health and hope for a future. Thank you, Dr. Weingart for being God’s hands in fulfilling Jeff’s scripture of hope: For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

By Kate May 2002 I am a 30 something fit female who is a nonsmoker. My father had low blood pressure but no symptoms. When I was in my early 20s, I worked and exercised but sometimes (about once a year) would have strange symptoms of getting dizzy, feeling faint and seeing stars. It was just always hanging over my head, plus I have always been shaky in the morning upon rising... I thought it was iron deficiency and took a multi-vitamin with iron and was always surprised that my blood work showed up fine. Doctors have always been impressed with my rather low blood pressure, convincing me it was a good thing. I thought so too... In November 2001, I came down with a nasty flu virus which left me with asthma. For 3 1/2 months I had to stay at home while recovering (believe me, not breathing well is a very scary thing) and had to use inhaled corticosteroids. Sometimes the corticosteroids made my heart rate fast, so you can imagine how surprised I was when, after getting and staying off the medicine once I was cured, the occasional fast heart rate continued. I did not take my heart rate very often prior to that, except while resting. It has always been between 60 and 65 bpm at rest. However, now it is especially bad in the morning when I stand up - unless I have a tall glass of water before rising, it goes to 120 bpm just from standing! And to think that I am an otherwise healthy and thin martial artist! I contacted a cardiologist via the internet (yes, I know it's not the ideal situation, but I had so many doctor visits while suffering from asthma that I really needed a reprieve from those doctor's appointments!) To make a long story short, the online cardiologist informed me that, if my heart was ok, it sounded like I was experiencing low blood pressure symptoms. I did more research on the Internet and came across this POTS website, which has been a blessing to me because I have all of the symptoms of POTS!!! Bending over makes me dizzy, raising my arms over my head might make my heart rate fast, and standing up in the morning or standing up from a chair too fast are very bad news!!! At the moment, I am trying to get off coffee and seem to have things under better control as I have been drinking lots of water and consuming salt. The tall glass of water does seem to be an immediate solution whenever I forget to stand up slowly. Of course, the day does get better as you progress, but from now on, I will be sure to carry a very large bottled water with me wherever I go...

By Kate May 2002 I am a 30 something fit female who is a nonsmoker. My father had low blood pressure but no symptoms. When I was in my early 20s, I worked and exercised but sometimes (about once a year) would have strange symptoms of getting dizzy, feeling faint and seeing stars. It was just always hanging over my head, plus I have always been shaky in the morning upon rising... I thought it was iron deficiency and took a multi-vitamin with iron and was always surprised that my blood work showed up fine. Doctors have always been impressed with my rather low blood pressure, convincing me it was a good thing. I thought so too... In November 2001, I came down with a nasty flu virus which left me with asthma. For 3 1/2 months I had to stay at home while recovering (believe me, not breathing well is a very scary thing) and had to use inhaled corticosteroids. Sometimes the corticosteroids made my heart rate fast, so you can imagine how surprised I was when, after getting and staying off the medicine once I was cured, the occasional fast heart rate continued. I did not take my heart rate very often prior to that, except while resting. It has always been between 60 and 65 bpm at rest. However, now it is especially bad in the morning when I stand up - unless I have a tall glass of water before rising, it goes to 120 bpm just from standing! And to think that I am an otherwise healthy and thin martial artist! I contacted a cardiologist via the internet (yes, I know it's not the ideal situation, but I had so many doctor visits while suffering from asthma that I really needed a reprieve from those doctor's appointments!) To make a long story short, the online cardiologist informed me that, if my heart was ok, it sounded like I was experiencing low blood pressure symptoms. I did more research on the Internet and came across this POTS website, which has been a blessing to me because I have all of the symptoms of POTS!!! Bending over makes me dizzy, raising my arms over my head might make my heart rate fast, and standing up in the morning or standing up from a chair too fast are very bad news!!! At the moment, I am trying to get off coffee and seem to have things under better control as I have been drinking lots of water and consuming salt. The tall glass of water does seem to be an immediate solution whenever I forget to stand up slowly. Of course, the day does get better as you progress, but from now on, I will be sure to carry a very large bottled water with me wherever I go...

By Julie Tremp April 2002 My name is Julie Tremp and I have been diagnosed with POTS. I was diagnosed by Dr. Blair Grubb from the Medical College of Ohio in Toledo, Ohio. I think the worst of it started in December 2000, although I believe I had symptoms in a milder form for several years prior to that. I know I was exposed to some chemical fumes at my place of employment in 1990. I developed tachycardia, which was very difficult to deal with. I also had symptoms before in 1982, six months after my son was born. I was then diagnosed with mitral valve prolapse. Since then, three other cardiologists have said I do not have mitral valve prolapse. The tachycardia was brief in 1982. Beta Blockers proved to be too strong for me at that time. In 1990 however, beta blockers (inderal) were needed to control the rapid heart rates. I also had a milder form of fatigue in addition to a balance problem. The only thing that continued was the tachycardia---but the beta blockers worked for that and eventually I was able to lower the dose from 60mgs to 30 mgs a day. I lived a pretty normal life until December of 2000; then the Bomb hit. It all started on December 5th after a dental appointment. I had been having digestive problems for many years, but as I got closer to December they got much more severe. A week before my appointment, I was more anxious then I have ever been. I've never been afraid to go to the dentist. I was getting an impacted tooth pulled though. But I had had this done with my wisdom teeth without problems. I felt like the anxiety was not in my control. Still, I hung in there and had the impacted tooth pulled. That is when everything started---the worst of it anyway. I developed tachycardia that night and went to the ER. They sent me home with a diagnosis of sinus tachycardia. Big deal, I knew I had that. For four days I experienced severe panic attack like symptoms. I had tremors constantly. It became more and more difficult to eat. I guess for about the first month or so I felt like the adrenaline was in constant flow. I went to the emergency room several times. One of the ER doctors gave me Ativan for anxiety. I heard this drug was addictive, so I was careful to take it only when I was extremely bad. As time went on, I lost around 25 pounds and became very weak. The anxiety seemed to calm a little and the tachycardia was controlled by an increase of the Inderal. However, the fatigue became severe and I developed low grade fevers which lasted about four months. I was bedridden for about 4 weeks and lost my job as an office manager because of it. My management duties had been impossible to keep up with. I tried to go back to work in April but was replaced by someone else. They offered me another position, but I knew I was too weak to continue. They laid me off so I could receive unemployment. Everything was so crazy with my body. I couldn't go to a store without losing my balance. The floor felt as if it were moving under me. I became sensitive to chemicals----especially cleaning fluids. I had been continuously exposed to fumes where I was employed. They consisted of fumes from ink towel toxins and other junk, like fuel and oil. I'm sure all of this aggravated things further. I slowly improved from April on. I did not get diagnosed by Dr. Grubb until June of 2001 . I had previously gone to many doctors ( Gastro, Neuro, Psyc, Internal, Cardio ) and was told many times that I needed psychological help. Ironically, the only one that believed I was ill was the psychologist. None of my friends believed me and I lost many of them, but my family stuck by me and realized that something was really wrong. Now, I have made many new friends. It is now April 26, 2002 and I have a somewhat normal life on Wellbutrin, Inderal and Synthroid. I have had neck problems since a car accident in 1977, after hitting my head on the windshield. I have noticed numbness and tingling in my arms and more difficulty in swallowing in recent months. I have also developed some numbness in my lower legs. An MRI has shown a bulging disk on C5 and C6. My MRIs are in the process of being sent to a neurosurgeon, DR. Heffez, in Chicago. So off I go to another adventure. December 2002 update: On May 14 and 15th of 2002 I went to Chicago to see Dr. Dan Heffez for testing. After all the testing, Dr. Heffez gave me the results. I remember one thing very clearly - he said, "you have a very bad neck - very bad". I really did not expect that at all. Really - I was shocked! I'll tell you why. When I got into a car wreck in 1977 I never got the proper treatment. I think I must have brought up my neck pain to probably 5 different doctors over the years. ALL THOUGHT IT WAS TENSION--You know--ANXIETY! (I must have had some HORRIBLE medical file following me for years - could have dated back to my childhood). So, through all these years I learned to live with it, and I became used to it. I thought maybe I was overreacting and was imagining the pain. I'd never connected it to the autonomic nervous system problems I was having. But as I looked back, it all started to make more sense. Dr. Heffez diagnosed me with two herniated disks on C5, C6 and C7. In addition, he diagnosed cervical stenosis, which I was born with. He also diagnosed a mild chiari malformation. I failed most all of the neurological testing. My cervical spine had severe pressure on it and was now also causing increasing numbness in my legs and arms. A normal space for the spine is 16mm to 20mm. I HAD LESS THAN 5MM – VERY SEVERE. Dr Heffez told me I needed surgery very soon. He said a mild fender bender causing any kind of whiplash could paralyze me from the neck down. He said it was a tragedy that I’d gone so long with such a bad neck. I believe that with such pressure on my spine, my body was not able to metabolize the chemicals I was exposed to at my old employer. My theory is that spinal stenosis plus chemical exposure could equal POTS. I had surgery June 27, 2002. The surgery took 4 1/2 hours. Dr. Heffez replaced the herniated disks with donor bone, fused 5,6, and 7 together, and added a titanium plate. It was quite rough coming out of the anesthesia, but after 18 hours or so, I was through the worst of it. Right after the surgery I was already showing improvement. My hands and feet were warm. Most of the numbness was gone 2 weeks after surgery. I started to show improvement in some of my POTS symptoms - especially the poor balance. My POTS symptoms are definitely milder now, and hopefully that will continue as time moves on. My 3-month x-rays came back good. I do have considerable pain in my neck area, which I think is due to the bones fusing. It is so difficult to tell because my perception of pain is off due to going so long with it because the doctors would not take me seriously. Still, as of 12-02-02, I am healing and doing a world better than in December, two years ago.

By Julie Tremp April 2002 My name is Julie Tremp and I have been diagnosed with POTS. I was diagnosed by Dr. Blair Grubb from the Medical College of Ohio in Toledo, Ohio. I think the worst of it started in December 2000, although I believe I had symptoms in a milder form for several years prior to that. I know I was exposed to some chemical fumes at my place of employment in 1990. I developed tachycardia, which was very difficult to deal with. I also had symptoms before in 1982, six months after my son was born. I was then diagnosed with mitral valve prolapse. Since then, three other cardiologists have said I do not have mitral valve prolapse. The tachycardia was brief in 1982. Beta Blockers proved to be too strong for me at that time. In 1990 however, beta blockers (inderal) were needed to control the rapid heart rates. I also had a milder form of fatigue in addition to a balance problem. The only thing that continued was the tachycardia---but the beta blockers worked for that and eventually I was able to lower the dose from 60mgs to 30 mgs a day. I lived a pretty normal life until December of 2000; then the Bomb hit. It all started on December 5th after a dental appointment. I had been having digestive problems for many years, but as I got closer to December they got much more severe. A week before my appointment, I was more anxious then I have ever been. I've never been afraid to go to the dentist. I was getting an impacted tooth pulled though. But I had had this done with my wisdom teeth without problems. I felt like the anxiety was not in my control. Still, I hung in there and had the impacted tooth pulled. That is when everything started---the worst of it anyway. I developed tachycardia that night and went to the ER. They sent me home with a diagnosis of sinus tachycardia. Big deal, I knew I had that. For four days I experienced severe panic attack like symptoms. I had tremors constantly. It became more and more difficult to eat. I guess for about the first month or so I felt like the adrenaline was in constant flow. I went to the emergency room several times. One of the ER doctors gave me Ativan for anxiety. I heard this drug was addictive, so I was careful to take it only when I was extremely bad. As time went on, I lost around 25 pounds and became very weak. The anxiety seemed to calm a little and the tachycardia was controlled by an increase of the Inderal. However, the fatigue became severe and I developed low grade fevers which lasted about four months. I was bedridden for about 4 weeks and lost my job as an office manager because of it. My management duties had been impossible to keep up with. I tried to go back to work in April but was replaced by someone else. They offered me another position, but I knew I was too weak to continue. They laid me off so I could receive unemployment. Everything was so crazy with my body. I couldn't go to a store without losing my balance. The floor felt as if it were moving under me. I became sensitive to chemicals----especially cleaning fluids. I had been continuously exposed to fumes where I was employed. They consisted of fumes from ink towel toxins and other junk, like fuel and oil. I'm sure all of this aggravated things further. I slowly improved from April on. I did not get diagnosed by Dr. Grubb until June of 2001 . I had previously gone to many doctors ( Gastro, Neuro, Psyc, Internal, Cardio ) and was told many times that I needed psychological help. Ironically, the only one that believed I was ill was the psychologist. None of my friends believed me and I lost many of them, but my family stuck by me and realized that something was really wrong. Now, I have made many new friends. It is now April 26, 2002 and I have a somewhat normal life on Wellbutrin, Inderal and Synthroid. I have had neck problems since a car accident in 1977, after hitting my head on the windshield. I have noticed numbness and tingling in my arms and more difficulty in swallowing in recent months. I have also developed some numbness in my lower legs. An MRI has shown a bulging disk on C5 and C6. My MRIs are in the process of being sent to a neurosurgeon, DR. Heffez, in Chicago. So off I go to another adventure. December 2002 update: On May 14 and 15th of 2002 I went to Chicago to see Dr. Dan Heffez for testing. After all the testing, Dr. Heffez gave me the results. I remember one thing very clearly - he said, "you have a very bad neck - very bad". I really did not expect that at all. Really - I was shocked! I'll tell you why. When I got into a car wreck in 1977 I never got the proper treatment. I think I must have brought up my neck pain to probably 5 different doctors over the years. ALL THOUGHT IT WAS TENSION--You know--ANXIETY! (I must have had some HORRIBLE medical file following me for years - could have dated back to my childhood). So, through all these years I learned to live with it, and I became used to it. I thought maybe I was overreacting and was imagining the pain. I'd never connected it to the autonomic nervous system problems I was having. But as I looked back, it all started to make more sense. Dr. Heffez diagnosed me with two herniated disks on C5, C6 and C7. In addition, he diagnosed cervical stenosis, which I was born with. He also diagnosed a mild chiari malformation. I failed most all of the neurological testing. My cervical spine had severe pressure on it and was now also causing increasing numbness in my legs and arms. A normal space for the spine is 16mm to 20mm. I HAD LESS THAN 5MM – VERY SEVERE. Dr Heffez told me I needed surgery very soon. He said a mild fender bender causing any kind of whiplash could paralyze me from the neck down. He said it was a tragedy that I’d gone so long with such a bad neck. I believe that with such pressure on my spine, my body was not able to metabolize the chemicals I was exposed to at my old employer. My theory is that spinal stenosis plus chemical exposure could equal POTS. I had surgery June 27, 2002. The surgery took 4 1/2 hours. Dr. Heffez replaced the herniated disks with donor bone, fused 5,6, and 7 together, and added a titanium plate. It was quite rough coming out of the anesthesia, but after 18 hours or so, I was through the worst of it. Right after the surgery I was already showing improvement. My hands and feet were warm. Most of the numbness was gone 2 weeks after surgery. I started to show improvement in some of my POTS symptoms - especially the poor balance. My POTS symptoms are definitely milder now, and hopefully that will continue as time moves on. My 3-month x-rays came back good. I do have considerable pain in my neck area, which I think is due to the bones fusing. It is so difficult to tell because my perception of pain is off due to going so long with it because the doctors would not take me seriously. Still, as of 12-02-02, I am healing and doing a world better than in December, two years ago.

By Barb March 2002 I am a 55 year old female who led a pretty normal healthy childhood. Two incidents in my late teens preceded the onset of mild to moderate symptoms which have lasted through much of adulthood. Around age 17+, I fell off my horse and was unconscious for a few minutes....since I fell backwards when the horse lunged forward, there may have been a mild whiplash injury to the neck. At age 19, I became ill with mononucleosis and missed several weeks of college. It was after that that I began to notice significant symptoms. Those symptoms included (but are not limited to) lightheadedness/unsteadiness, focus and concentration difficulties, memory difficulties, intermittent nausea and IBS, and environmental sensitivities. I noticed over the years that symptoms were worse in Malls, when I had to stand still in lines, in church (esp. when I stood to sing), during or towards the end of meals, etc. I developed coping skills that included fidgeting, leaning on walls or other available stationary objects, sitting down rapidly if I felt dizzy, elevating my feet, breathing deeply, keeping cool, etc. I generally felt fine if I was totally supine and could never understand why I felt so bad when I was in a standing position. There were a few times when I felt noticeably better and all seem related to hormonal issues. I felt better while on the birth control pill when I was first married and between the births of my two children. I also felt much better during my two pregnancies. With regard to the pregnancies, it is possible that I felt better due to increased blood volume (I believe that there is an increased blood volume of about 33% during pregnancy). With regard to blood volume, over the years medical personnel always had a very hard time drawing blood from me or finding a vein to set up an IV. Either they couldn’t find a decent vein to begin with or if they did, it would either collapse or they might only get a partial vial of blood out of the vein. So, I do believe that low blood volume has been a factor in my problems. In the Fall of 2000, I had a blood draw done and was amazed that the technician had no trouble finding a vein, but did have some trouble stopping the blood flow afterwards! In fact, when I took the band aid off on my way home from the doctor’s, the band aid was quite bloody. This would have been inconceivable before. I am not sure what has increased the blood volume, but it could have been a number of factors (Midodrine, elevated head of bed, cervical collar that I wear, etc.) but at least the increased blood volume has been a factor in my improvement over the last year. In spite of the mild to moderate symptoms of much of my adulthood, I managed a mostly full life without medications until several years ago. About 5-6 years ago, I started to notice additional symptoms such as numbness in my lower legs and left foot, increased instability, increased lethargy and almost a narcolepsy-like symptom in the afternoon, and increased fatigue and concentration problems. Almost 2 years ago, I noticed a dramatic decrease in my ability to eat much food in a sitting. I would feel hungry but would feel full after a few bites of food. After that began, I experienced more and more frequent spells of severe dizziness and near syncope. In Feb. 2000, I experienced some episodes of passing out which included slurred speech, so I ended up in the ER a few times. I also experienced severely dry mouth and increased thirst. Workups showed a normal heart, no regular diabetes or diabetes insipidus, no thyroid problems, etc. etc. My PCP sent me to a facility where they could do more testing, which included a tilt-table test. It showed a heart rate increase of about 50 BPM upon HUT (head upright tilt) and a couple of minutes later, my BP crashed to about 50/30 and heart rate to about 40. Other autonomic testing was done as well. I was diagnosed with Postural Tachycardia Syndrome and Neurocardiogenic Syncope. It was a relief to at least have a label for this weird disorder! I was started on a beta blocker (Propanolol 40 mg. BID) and that seemed to help substantially for about two weeks. A little over two weeks into treatment, I awoke one morning very dizzy and unable to get upright. My SUPINE BP was about 75/50 and I was unable to get upright to get a BP without passing out. My heart rate was also low (in the 30’s and 40’s). I called my doctor at that time and he said to discontinue the beta blocker which I had already decided to do! Since then we have tried beta blockers on two other occasions at much lower doses and they help for a short time and then build up in my system and crash my BP and HR, so they are not a good choice for me for long term therapy. I have had a number of MRI’s of both the head and the neck over the past year and a half. The only abnormality on those MRI’s is some cervical stenosis (compression) between C5-C7 in my cervical spine and some brainstem compression as well. I will be having surgery to decompress the areas of stenosis in the cervical spine in November of 2001. I believe that at least a part of my problem lies in this area for the following reasons: (1) I had long used a coping method of supporting my neck with my hand if I was standing or with the headrest and a pillow when driving or in other ways (supporting my neck seemed to reduce my symptoms); (2) Moving my head increased symptoms; (3) wearing a cervical collar significantly reduces symptoms; (4) I know a number of other people with symptoms and diagnoses similar to mine who have benefited significantly from these surgeries; (5) I know a well-respected neurosurgeon who reports on the significant improvement of his colleague’s daughter through this procedure and he is impressed with the work of these doctors. (6) From what I have read, I have a congenitally small canal and foramen magnum to begin with and the further narrowing due to degenerative bone spurs occurred at the same time as I experienced a worsening of symptoms. (7) Most of my symptoms occur when I am vertical, so I think that gravity may play a role (i.e. I already have a smaller then normal foramen magnum, and some tonsillar herniation indicated when I am lying down during an MRI scan. I believe that when I stand up, the effects of gravity cause increased tonsillar herniation and therefore much greater brainstem compression, which leads to significant symptoms). Additionally, I believe that immune system dysfunction may contribute to the problem in the neck and brainstem area due to an inflammatory process. (i.e. when I am exposed to something that I am sensitive to there is an inflammatory reaction that may cause some brainstem swelling which could further narrow the space and cause further nerve compression). Prior to August, 2000, I spent a lot of time in the hospital due to dehydration and passing out. I have not been hospitalized since then due to some measures that I have taken. The two most important measures , I believe, are the wearing of a soft cervical collar and some dietary changes. The collar stabilizes my neck thus reducing the degree of nerve compression. Dietary changes include the elimination of all dairy products, all gluten containing products (wheat, rye, oats, barley), and beef. Additionally, I limit simple carbohydrates, high fat foods, and artificial additives and colorings. There is some scientific evidence especially for the elimination of the dairy products as the protein in dairy (casein) has been shown to increase symptoms in a significant number of people with these conditions. I also take an antihistamine to help reduce histamine levels as I have learned via Johns Hopkins that histamine dilates blood vessels (something that will lower blood pressure and is, therefore, not a good idea for me)! Johns Hopkins recommends aggressive treatment of allergies in people with these syndromes. Other measures that I have taken that seem to have helped are the supplement ginger to reduce nausea (that is pretty well eliminated at this time) and digestive enzymes with larger meals or meals that are higher in fats and proteins. I am much better then last year, but remain pretty disabled. I am hopeful that the surgery will further reduce symptoms for me and can add to this story after I go through that process. Feb. 2002 To update the above.......I had surgery on 11/29/01 with Dr. Heffez in Chicago. He did a partial Laminectomy from C5-C7, removed bone spurs and fused the vertebrae with titanium rods and screws. He said that both vertebrae were “extremely mobile.” Post surgical pain meds caused me a lot of problems primarily related to lowering my BP too much, so I discontinued them as soon as possible (after consultation with my docs). Symptom improvement since surgery includes reduction in shortness of breath problem, significant reduction in nighttime dry eyes, more able to walk but only very short distances, more able to stand for short periods, reduction in blurred vision problem, and less fatigue. I can now take a bath unassisted and have reduced my Midodrine dosage. (Midodrine is designed to constrict peripheral blood vessels and help keep BP elevated). I also no longer need my surgical grade compression pantyhose but still wear low grade compression socks or knee high hose. March, 2002 The shortness of breath symptom that was gone after surgery seems to have returned but to a lesser degree. Also, the dry eyes seem to be back (also to a lesser degree then prior to surgery). So, while there have been improvements from surgery that are very important to me (it is nice to take a real bath unassisted), I remain pretty disabled. Prior to surgery, I mostly managed with sponge baths and an occasional regular bath assisted by my husband or daughter (but those baths were shear torture as I was extremely dizzy and nauseous). I remain unable to drive a car, walk unassisted, or hold a job. Prior to becoming severely disabled by this, I worked full-time in a professional position. I believe that further treatment will get me back to a more functional status, but it is a long and costly road!! One of the most frustrating parts of this disorder is the lack of knowledge, in general, by the medical profession. Also, because many of the symptoms mimic some anxiety disorders, patients are frequently misdiagnosed with an anxiety disorder such as panic disorder. And even in those doctors that are knowledgeable, there is still much to be learned as most of the topnotch doctors find these disorders challenging to treat, at best. We desperately need funding to increase significantly research on these disorders as well as to educate current physicians and med students as to the basics of what is currently known about these disorders.

By Barb March 2002 I am a 55 year old female who led a pretty normal healthy childhood. Two incidents in my late teens preceded the onset of mild to moderate symptoms which have lasted through much of adulthood. Around age 17+, I fell off my horse and was unconscious for a few minutes....since I fell backwards when the horse lunged forward, there may have been a mild whiplash injury to the neck. At age 19, I became ill with mononucleosis and missed several weeks of college. It was after that that I began to notice significant symptoms. Those symptoms included (but are not limited to) lightheadedness/unsteadiness, focus and concentration difficulties, memory difficulties, intermittent nausea and IBS, and environmental sensitivities. I noticed over the years that symptoms were worse in Malls, when I had to stand still in lines, in church (esp. when I stood to sing), during or towards the end of meals, etc. I developed coping skills that included fidgeting, leaning on walls or other available stationary objects, sitting down rapidly if I felt dizzy, elevating my feet, breathing deeply, keeping cool, etc. I generally felt fine if I was totally supine and could never understand why I felt so bad when I was in a standing position. There were a few times when I felt noticeably better and all seem related to hormonal issues. I felt better while on the birth control pill when I was first married and between the births of my two children. I also felt much better during my two pregnancies. With regard to the pregnancies, it is possible that I felt better due to increased blood volume (I believe that there is an increased blood volume of about 33% during pregnancy). With regard to blood volume, over the years medical personnel always had a very hard time drawing blood from me or finding a vein to set up an IV. Either they couldn’t find a decent vein to begin with or if they did, it would either collapse or they might only get a partial vial of blood out of the vein. So, I do believe that low blood volume has been a factor in my problems. In the Fall of 2000, I had a blood draw done and was amazed that the technician had no trouble finding a vein, but did have some trouble stopping the blood flow afterwards! In fact, when I took the band aid off on my way home from the doctor’s, the band aid was quite bloody. This would have been inconceivable before. I am not sure what has increased the blood volume, but it could have been a number of factors (Midodrine, elevated head of bed, cervical collar that I wear, etc.) but at least the increased blood volume has been a factor in my improvement over the last year. In spite of the mild to moderate symptoms of much of my adulthood, I managed a mostly full life without medications until several years ago. About 5-6 years ago, I started to notice additional symptoms such as numbness in my lower legs and left foot, increased instability, increased lethargy and almost a narcolepsy-like symptom in the afternoon, and increased fatigue and concentration problems. Almost 2 years ago, I noticed a dramatic decrease in my ability to eat much food in a sitting. I would feel hungry but would feel full after a few bites of food. After that began, I experienced more and more frequent spells of severe dizziness and near syncope. In Feb. 2000, I experienced some episodes of passing out which included slurred speech, so I ended up in the ER a few times. I also experienced severely dry mouth and increased thirst. Workups showed a normal heart, no regular diabetes or diabetes insipidus, no thyroid problems, etc. etc. My PCP sent me to a facility where they could do more testing, which included a tilt-table test. It showed a heart rate increase of about 50 BPM upon HUT (head upright tilt) and a couple of minutes later, my BP crashed to about 50/30 and heart rate to about 40. Other autonomic testing was done as well. I was diagnosed with Postural Tachycardia Syndrome and Neurocardiogenic Syncope. It was a relief to at least have a label for this weird disorder! I was started on a beta blocker (Propanolol 40 mg. BID) and that seemed to help substantially for about two weeks. A little over two weeks into treatment, I awoke one morning very dizzy and unable to get upright. My SUPINE BP was about 75/50 and I was unable to get upright to get a BP without passing out. My heart rate was also low (in the 30’s and 40’s). I called my doctor at that time and he said to discontinue the beta blocker which I had already decided to do! Since then we have tried beta blockers on two other occasions at much lower doses and they help for a short time and then build up in my system and crash my BP and HR, so they are not a good choice for me for long term therapy. I have had a number of MRI’s of both the head and the neck over the past year and a half. The only abnormality on those MRI’s is some cervical stenosis (compression) between C5-C7 in my cervical spine and some brainstem compression as well. I will be having surgery to decompress the areas of stenosis in the cervical spine in November of 2001. I believe that at least a part of my problem lies in this area for the following reasons: (1) I had long used a coping method of supporting my neck with my hand if I was standing or with the headrest and a pillow when driving or in other ways (supporting my neck seemed to reduce my symptoms); (2) Moving my head increased symptoms; (3) wearing a cervical collar significantly reduces symptoms; (4) I know a number of other people with symptoms and diagnoses similar to mine who have benefited significantly from these surgeries; (5) I know a well-respected neurosurgeon who reports on the significant improvement of his colleague’s daughter through this procedure and he is impressed with the work of these doctors. (6) From what I have read, I have a congenitally small canal and foramen magnum to begin with and the further narrowing due to degenerative bone spurs occurred at the same time as I experienced a worsening of symptoms. (7) Most of my symptoms occur when I am vertical, so I think that gravity may play a role (i.e. I already have a smaller then normal foramen magnum, and some tonsillar herniation indicated when I am lying down during an MRI scan. I believe that when I stand up, the effects of gravity cause increased tonsillar herniation and therefore much greater brainstem compression, which leads to significant symptoms). Additionally, I believe that immune system dysfunction may contribute to the problem in the neck and brainstem area due to an inflammatory process. (i.e. when I am exposed to something that I am sensitive to there is an inflammatory reaction that may cause some brainstem swelling which could further narrow the space and cause further nerve compression). Prior to August, 2000, I spent a lot of time in the hospital due to dehydration and passing out. I have not been hospitalized since then due to some measures that I have taken. The two most important measures , I believe, are the wearing of a soft cervical collar and some dietary changes. The collar stabilizes my neck thus reducing the degree of nerve compression. Dietary changes include the elimination of all dairy products, all gluten containing products (wheat, rye, oats, barley), and beef. Additionally, I limit simple carbohydrates, high fat foods, and artificial additives and colorings. There is some scientific evidence especially for the elimination of the dairy products as the protein in dairy (casein) has been shown to increase symptoms in a significant number of people with these conditions. I also take an antihistamine to help reduce histamine levels as I have learned via Johns Hopkins that histamine dilates blood vessels (something that will lower blood pressure and is, therefore, not a good idea for me)! Johns Hopkins recommends aggressive treatment of allergies in people with these syndromes. Other measures that I have taken that seem to have helped are the supplement ginger to reduce nausea (that is pretty well eliminated at this time) and digestive enzymes with larger meals or meals that are higher in fats and proteins. I am much better then last year, but remain pretty disabled. I am hopeful that the surgery will further reduce symptoms for me and can add to this story after I go through that process. Feb. 2002 To update the above.......I had surgery on 11/29/01 with Dr. Heffez in Chicago. He did a partial Laminectomy from C5-C7, removed bone spurs and fused the vertebrae with titanium rods and screws. He said that both vertebrae were “extremely mobile.” Post surgical pain meds caused me a lot of problems primarily related to lowering my BP too much, so I discontinued them as soon as possible (after consultation with my docs). Symptom improvement since surgery includes reduction in shortness of breath problem, significant reduction in nighttime dry eyes, more able to walk but only very short distances, more able to stand for short periods, reduction in blurred vision problem, and less fatigue. I can now take a bath unassisted and have reduced my Midodrine dosage. (Midodrine is designed to constrict peripheral blood vessels and help keep BP elevated). I also no longer need my surgical grade compression pantyhose but still wear low grade compression socks or knee high hose. March, 2002 The shortness of breath symptom that was gone after surgery seems to have returned but to a lesser degree. Also, the dry eyes seem to be back (also to a lesser degree then prior to surgery). So, while there have been improvements from surgery that are very important to me (it is nice to take a real bath unassisted), I remain pretty disabled. Prior to surgery, I mostly managed with sponge baths and an occasional regular bath assisted by my husband or daughter (but those baths were shear torture as I was extremely dizzy and nauseous). I remain unable to drive a car, walk unassisted, or hold a job. Prior to becoming severely disabled by this, I worked full-time in a professional position. I believe that further treatment will get me back to a more functional status, but it is a long and costly road!! One of the most frustrating parts of this disorder is the lack of knowledge, in general, by the medical profession. Also, because many of the symptoms mimic some anxiety disorders, patients are frequently misdiagnosed with an anxiety disorder such as panic disorder. And even in those doctors that are knowledgeable, there is still much to be learned as most of the topnotch doctors find these disorders challenging to treat, at best. We desperately need funding to increase significantly research on these disorders as well as to educate current physicians and med students as to the basics of what is currently known about these disorders.

By Bethany Welcome, thanks for taking the time to read my story. My name is Bethany, and I'm nineteen-years old. As I look up at the night sky, I always pick out one star that I make mine and that is the star that I wish upon. My wishes are so varied...I wish that I could somehow keep in contact with my friends from high school, I wish that I could remember what it was like to run, I wish that I could do all of the small things that you never appreciate until they are gone, but most of all, I wish that I could make a difference in the world. Right now I am working on making that last wish come true by studying to be a special education teacher and working with young children with disabilities. The best times I have are those I spend with "my kids," because they accept me just the way that I am. They are wonderful! I believe that there is nothing better in life than to make a child smile. Medical conditions have pretty much been a part of my life since I was born, so the transition from "healthy" to "sick" was more of a gradual change than a major transition. As an infant, I was what is called a "near-miss" SIDS baby. SIDS stands for "sudden infant death syndrome," and as you can see, I survived (thank God) but not without much emergency resuscitation. I would sometimes stop breathing when I slept, and nobody has ever figured out why. You can imagine how scary this was for my parents. Fortunately, I "grew out" of that medical problem! What I did not grow out of were the constant difficulties that I had with my bladder. After a zillion tests, I learned that I had something called a neurogenic bladder, which means that it just does not respond the way it's supposed to when full of urine. And get this, at the age of eleven, I was also diagnosed with lupus, a strange condition in which the body attacks itself as if it were a bad germ. My mother has the same problem. Though I grew up with these challenges, there were not many things I couldn't do. That is, until my senior year of high school, when I developed mononucleosis, and the virus that caused it, Epstein Barr, continued to hang around for a long time. My body just broke down under the weight of it all, and I missed almost three months of school, completely removed from my friends, the activities I loved, and the excitement I should have felt during my last year of high school. Returning to school after a long time was very difficult because everyone else had all of these special memories of senior year that I didn't have, and sometimes it felt like they had forgotten about me. I was very lucky to have a great group of friends, though. They didn't treat me any differently because I was sick, and they did their best to get me out of the house whenever I felt able. When you take steroids for a long time, one of the things that happens is that you gain weight. I learned to ignore the stares and comments about my appearance, but they still hurt. I did learn during this time that once people understand why someone is different they often are able to accept those differences better. During this year of being sick, one of my wishes came true. While my teachers at school questioned whether or not I would be able to graduate, I had been busy making plans for the next year. And guess what? I not only graduated from high school, I graduated fourth in my class and received a full tuition scholarship to Vanderbilt University. Unfortunately, my medical litany did not end in high school. Right before college, I was diagnosed with fibromyalgia (a muscle pain disorder), chronic fatigue, Hashimoto's thyroiditis (an autoimmune disease where my body attacks my thyroid gland), sinus node tachycardia (my heart races without any reason that I can figure out), and neuropathy (a loss of sensation in my hands and feet). All of these problems have made college life very difficult for me. I struggle to get my class work done, which leaves little time for a social life. I have not yet been on my first date, and sometimes I wonder if anyone will ever want to date someone with so many problems. But then I try to focus on today, right now, and the things I can control. I'm learning to be an advocate for myself and to speak up when I need to . . . not easy when you are painfully shy. From the sounds of it, my medical problems seem to play a big part in my life, but that is actually far from the truth. They are a part of who I am, but I am so much more than a bunch of diagnoses. I still try to do all of the things that I enjoy, like listening to music, writing, working with children, and collecting frogs (even though I am actually terrified of the real ones). It is not easy growing up with a chronic illness. But as a result of all my experiences, I have learned who my real friends are. I have become even closer to my mom, my best friend of all. And I have come to the realization that though I wish there were cures for my problems, I know that regardless, I am OK, and that when I wish upon a star, many of my wishes can still come true. Update: Hooray, just finished my second year at Vanderbilt! On the medical front, my heart condition has officially been diagnosed as POTS (postural orthostatic tachycardia syndrome) which is related somehow to the Chronic fatigue syndrome. I've also acquired some new diagnoses involving an assortment of knee problems including arthritis and chondromalacia. Unfortunately, these require braces, PT and meds and may require surgery if the less invasive things don't work. The new labels for my problems don�t really change anything, I am still me no matter what diagnosis they place on it and my life continues on no matter what. It is more a comfort knowing that there is a name/names for what is going on and that someone believes me...there is nothing worse than doctors that refuse to listen or say it's all in my head. As far as I am concerned, the labels are just convenient ways for doctors to share information on medical conditions...I am not a lupus, a fibromyalgia, a POTS, an insulin resistance, an arthritis. I am a person with lupus, a person with fibromyalgia, a person with POTS, etc and they are only a small part of who I am. I wish people could see past their symptoms, the differences, and see all of the similarities between them and me. Perhaps I may never be able to run or jump, to be a perfect size 8, or to fit the image of "normal" but I am myself and right now that seems to me to be a pretty good person to be.

By Bethany Welcome, thanks for taking the time to read my story. My name is Bethany, and I'm nineteen-years old. As I look up at the night sky, I always pick out one star that I make mine and that is the star that I wish upon. My wishes are so varied...I wish that I could somehow keep in contact with my friends from high school, I wish that I could remember what it was like to run, I wish that I could do all of the small things that you never appreciate until they are gone, but most of all, I wish that I could make a difference in the world. Right now I am working on making that last wish come true by studying to be a special education teacher and working with young children with disabilities. The best times I have are those I spend with "my kids," because they accept me just the way that I am. They are wonderful! I believe that there is nothing better in life than to make a child smile. Medical conditions have pretty much been a part of my life since I was born, so the transition from "healthy" to "sick" was more of a gradual change than a major transition. As an infant, I was what is called a "near-miss" SIDS baby. SIDS stands for "sudden infant death syndrome," and as you can see, I survived (thank God) but not without much emergency resuscitation. I would sometimes stop breathing when I slept, and nobody has ever figured out why. You can imagine how scary this was for my parents. Fortunately, I "grew out" of that medical problem! What I did not grow out of were the constant difficulties that I had with my bladder. After a zillion tests, I learned that I had something called a neurogenic bladder, which means that it just does not respond the way it's supposed to when full of urine. And get this, at the age of eleven, I was also diagnosed with lupus, a strange condition in which the body attacks itself as if it were a bad germ. My mother has the same problem. Though I grew up with these challenges, there were not many things I couldn't do. That is, until my senior year of high school, when I developed mononucleosis, and the virus that caused it, Epstein Barr, continued to hang around for a long time. My body just broke down under the weight of it all, and I missed almost three months of school, completely removed from my friends, the activities I loved, and the excitement I should have felt during my last year of high school. Returning to school after a long time was very difficult because everyone else had all of these special memories of senior year that I didn't have, and sometimes it felt like they had forgotten about me. I was very lucky to have a great group of friends, though. They didn't treat me any differently because I was sick, and they did their best to get me out of the house whenever I felt able. When you take steroids for a long time, one of the things that happens is that you gain weight. I learned to ignore the stares and comments about my appearance, but they still hurt. I did learn during this time that once people understand why someone is different they often are able to accept those differences better. During this year of being sick, one of my wishes came true. While my teachers at school questioned whether or not I would be able to graduate, I had been busy making plans for the next year. And guess what? I not only graduated from high school, I graduated fourth in my class and received a full tuition scholarship to Vanderbilt University. Unfortunately, my medical litany did not end in high school. Right before college, I was diagnosed with fibromyalgia (a muscle pain disorder), chronic fatigue, Hashimoto's thyroiditis (an autoimmune disease where my body attacks my thyroid gland), sinus node tachycardia (my heart races without any reason that I can figure out), and neuropathy (a loss of sensation in my hands and feet). All of these problems have made college life very difficult for me. I struggle to get my class work done, which leaves little time for a social life. I have not yet been on my first date, and sometimes I wonder if anyone will ever want to date someone with so many problems. But then I try to focus on today, right now, and the things I can control. I'm learning to be an advocate for myself and to speak up when I need to . . . not easy when you are painfully shy. From the sounds of it, my medical problems seem to play a big part in my life, but that is actually far from the truth. They are a part of who I am, but I am so much more than a bunch of diagnoses. I still try to do all of the things that I enjoy, like listening to music, writing, working with children, and collecting frogs (even though I am actually terrified of the real ones). It is not easy growing up with a chronic illness. But as a result of all my experiences, I have learned who my real friends are. I have become even closer to my mom, my best friend of all. And I have come to the realization that though I wish there were cures for my problems, I know that regardless, I am OK, and that when I wish upon a star, many of my wishes can still come true. Update: Hooray, just finished my second year at Vanderbilt! On the medical front, my heart condition has officially been diagnosed as POTS (postural orthostatic tachycardia syndrome) which is related somehow to the Chronic fatigue syndrome. I've also acquired some new diagnoses involving an assortment of knee problems including arthritis and chondromalacia. Unfortunately, these require braces, PT and meds and may require surgery if the less invasive things don't work. The new labels for my problems don�t really change anything, I am still me no matter what diagnosis they place on it and my life continues on no matter what. It is more a comfort knowing that there is a name/names for what is going on and that someone believes me...there is nothing worse than doctors that refuse to listen or say it's all in my head. As far as I am concerned, the labels are just convenient ways for doctors to share information on medical conditions...I am not a lupus, a fibromyalgia, a POTS, an insulin resistance, an arthritis. I am a person with lupus, a person with fibromyalgia, a person with POTS, etc and they are only a small part of who I am. I wish people could see past their symptoms, the differences, and see all of the similarities between them and me. Perhaps I may never be able to run or jump, to be a perfect size 8, or to fit the image of "normal" but I am myself and right now that seems to me to be a pretty good person to be.

By Sandra September 2001 It all started at the end of January 1999 for me. I was 55 years old. I had been working at a University for 25 years. Two of the students that worked for me came to work sick. The virus soon spread to almost everyone in our office. I was the only one that suffered permanent nerve damage. I had vomiting and diarrhea and cold-like symptoms. I lost 14 lbs. in two days. I live alone and had trouble standing long enough to get food for myself. I did not want anyone else to come in to help me and be exposed to this also. My brother would leave Seven up and Gatorade by my door so I could try to keep from getting dehydrated. I was taken to the emergency room four times and they kept giving me fluids. I was in the hospital twice - the second time for 2 1/2 weeks. I did not get any better. I was going 10 days without a bowel movement even with heavy laxatives. (I still have to take laxatives, and my life revolves around when they will work). I could not eat and was loosing weight fast. I lost a total of 55 lbs. I have since gained some of that back. I spent 4 1/2 months bedridden. My blood pressure on standing dropped to 23/14. Several times I felt as if I was going to die. I also have trouble with dry mouth and throat, which is part of the autonomic problems. I passed out 5 times in the beginning. I would still pass out today if I didn't carry a little stool with me everywhere. I am not able to function at all without proAmitine and florinef. It is a struggle to do anything when I am upright, as I have to sit every few minutes. I had to give up my job and I had only 2 more years until early retirement. I had to move out of state, as I need the assistance of my family. I can no longer drive. I was fortunate enough to be able to go to the Mayo Clinic and was in a study for midodrine (proAmitine). Since my nerve damage is permanent (the virus attacked the nerves) I am at the mercy of researchers to find a cure. I think it is important for people with dysautonomia to not give up hope. Even though everything becomes an effort - make that effort. I have made new friends since this, found love, and started a new hobby (making jewelry). I try to help other people as much as possible. You can always find someone that is worse off that you! If life hands you a lemon - make lemonade!

By Sandra September 2001 It all started at the end of January 1999 for me. I was 55 years old. I had been working at a University for 25 years. Two of the students that worked for me came to work sick. The virus soon spread to almost everyone in our office. I was the only one that suffered permanent nerve damage. I had vomiting and diarrhea and cold-like symptoms. I lost 14 lbs. in two days. I live alone and had trouble standing long enough to get food for myself. I did not want anyone else to come in to help me and be exposed to this also. My brother would leave Seven up and Gatorade by my door so I could try to keep from getting dehydrated. I was taken to the emergency room four times and they kept giving me fluids. I was in the hospital twice - the second time for 2 1/2 weeks. I did not get any better. I was going 10 days without a bowel movement even with heavy laxatives. (I still have to take laxatives, and my life revolves around when they will work). I could not eat and was loosing weight fast. I lost a total of 55 lbs. I have since gained some of that back. I spent 4 1/2 months bedridden. My blood pressure on standing dropped to 23/14. Several times I felt as if I was going to die. I also have trouble with dry mouth and throat, which is part of the autonomic problems. I passed out 5 times in the beginning. I would still pass out today if I didn't carry a little stool with me everywhere. I am not able to function at all without proAmitine and florinef. It is a struggle to do anything when I am upright, as I have to sit every few minutes. I had to give up my job and I had only 2 more years until early retirement. I had to move out of state, as I need the assistance of my family. I can no longer drive. I was fortunate enough to be able to go to the Mayo Clinic and was in a study for midodrine (proAmitine). Since my nerve damage is permanent (the virus attacked the nerves) I am at the mercy of researchers to find a cure. I think it is important for people with dysautonomia to not give up hope. Even though everything becomes an effort - make that effort. I have made new friends since this, found love, and started a new hobby (making jewelry). I try to help other people as much as possible. You can always find someone that is worse off that you! If life hands you a lemon - make lemonade!

By Dave August 2001 POTS became my reality while I was finishing my last degree in college. I would categorize the onset as sudden and slow. My first symptom was the inability to engage in normal fitness training. I was heavily involved in triathlon sports and weight lifting. Running became the first activity I was unable to perform. Later, as the syndrome progressed, I developed several unusual symptoms: numbness, increased and decreased sweating, inability to concentrate, fatigue, flushing after large meals/heat and difficulty with standing/walking. Months later my doctor diagnosed me with an active mono infection. This was a relief to me because it was a diagnosis I understood and felt I would recover from. I rested and assumed symptoms would abate. Unfortunately they did not and things got worse. My method of coping was to pretend I wasn't experiencing it. I did not share what I was going through with my family or friends. It quickly became something I could no longer ignore, and I began to get scared. The doctor put me through a number of tests and procedures to check for a multitude of ailments. He soon exhausted his knowledge base and began the typical suggestions that maybe it was all anxiety/depression. I think this is when POTS became my biggest mental challenge. I began to doubt my gut instincts that told me it was not just chronic fatigue or anxiety/depression. Anxiety was difficult to dispute because I was constantly anxious about what was happening to me and loosing my job. Depression was also a reality, as I was mourning the life I once had and feeling mighty sorry for myself. At this point, I knew I was going to have to find the diagnosis on my own. A month or so after researching at the library I finally came across POTS and knew it was a perfect fit. I learned to avoid the "crazy" diagnosis by leaving out some of the more unusual symptoms and reporting only major symptoms. I brought in self-documented tachycardia responses to both sitting and standing to a cardiologist. I also brought in various research articles I found on POTS and pleaded for him to do a tilt table test. He agreed with some arm-twisting and the diagnosis became official about a year or so after symptom onset. I did not respond well to medications. Side effects were too much for me at that point. I researched and tried every herb I thought might be useful. I eventually used only salt supplementation, exercise, and a majorly modified lifestyle. I had to completely adjust at work by using a rolling stool and sitting for most of the time just to be able to get through the day. At the end of each day, I felt like I had run a marathon. I find exercise and salt supplementation to be most beneficial. The muscular development of my body has given me back more orthostatic tolerance and energy than any drug has. Exercise intolerance is very real for me, but I have learned how to adjust so I could workout, bike and swim again. Discovering where the fatigue wall is with exercise has also been important. There have been times, when I was bedridden, that I really needed to push beyond that wall to get back some orthostatic tolerance Diet also seems to be very effective for me. I have stopped eating sugar, yeasts, wheat, and dairy, which has maximized my energy and decreased bowel problems. Grazing throughout the day instead of eating large meals has also helped. My philosophy has always been to give my body the best environment to heal itself... be that with meditation, exercise, or diet. I have learned many lessons the hard way, as there was not a lot of research on POTS at that time. I also did not have a doctor who knew enough to instruct me on what to do or how to do things. Finding the NDRF was one of the most helpful things for me. It had others who were going through the same challenges, and I found good advice on how to manage the illness. Support and learning about various medications and tricks are some of the most valuable tools you have to deal with this disorder. I think a competent doctor who specializes in autonomic disorders is probably a better asset. However, I have never had access to one of those doctors. I don't think I will ever know what caused my POTS onset. In addition to mono, I also had a neck injury and was under a great deal of stress both personally and professionally. I have been lucky enough to have a year or so of a remission when I returned to my old lifestyle. The pushing of my body mentally and physically, I believe, brought a return of POTS. So, I have learned to surrender to my new life and look for the warning signs that I am overdoing. Today I am about to return to work after another neck injury and huge exacerbation of POTS. I know great improvement is possible, as I have had it in the past and know others who are greatly improved. Although I don't think there are any magic answers, I know I have learned so many lessons from having POTS and it has made me a stronger individual. In the words of MLK: "The ultimate measure of a man is not where he stands at times of comfort and convenience but where he stands during times of challenge and controversy."

By Dave August 2001 POTS became my reality while I was finishing my last degree in college. I would categorize the onset as sudden and slow. My first symptom was the inability to engage in normal fitness training. I was heavily involved in triathlon sports and weight lifting. Running became the first activity I was unable to perform. Later, as the syndrome progressed, I developed several unusual symptoms: numbness, increased and decreased sweating, inability to concentrate, fatigue, flushing after large meals/heat and difficulty with standing/walking. Months later my doctor diagnosed me with an active mono infection. This was a relief to me because it was a diagnosis I understood and felt I would recover from. I rested and assumed symptoms would abate. Unfortunately they did not and things got worse. My method of coping was to pretend I wasn't experiencing it. I did not share what I was going through with my family or friends. It quickly became something I could no longer ignore, and I began to get scared. The doctor put me through a number of tests and procedures to check for a multitude of ailments. He soon exhausted his knowledge base and began the typical suggestions that maybe it was all anxiety/depression. I think this is when POTS became my biggest mental challenge. I began to doubt my gut instincts that told me it was not just chronic fatigue or anxiety/depression. Anxiety was difficult to dispute because I was constantly anxious about what was happening to me and loosing my job. Depression was also a reality, as I was mourning the life I once had and feeling mighty sorry for myself. At this point, I knew I was going to have to find the diagnosis on my own. A month or so after researching at the library I finally came across POTS and knew it was a perfect fit. I learned to avoid the "crazy" diagnosis by leaving out some of the more unusual symptoms and reporting only major symptoms. I brought in self-documented tachycardia responses to both sitting and standing to a cardiologist. I also brought in various research articles I found on POTS and pleaded for him to do a tilt table test. He agreed with some arm-twisting and the diagnosis became official about a year or so after symptom onset. I did not respond well to medications. Side effects were too much for me at that point. I researched and tried every herb I thought might be useful. I eventually used only salt supplementation, exercise, and a majorly modified lifestyle. I had to completely adjust at work by using a rolling stool and sitting for most of the time just to be able to get through the day. At the end of each day, I felt like I had run a marathon. I find exercise and salt supplementation to be most beneficial. The muscular development of my body has given me back more orthostatic tolerance and energy than any drug has. Exercise intolerance is very real for me, but I have learned how to adjust so I could workout, bike and swim again. Discovering where the fatigue wall is with exercise has also been important. There have been times, when I was bedridden, that I really needed to push beyond that wall to get back some orthostatic tolerance Diet also seems to be very effective for me. I have stopped eating sugar, yeasts, wheat, and dairy, which has maximized my energy and decreased bowel problems. Grazing throughout the day instead of eating large meals has also helped. My philosophy has always been to give my body the best environment to heal itself... be that with meditation, exercise, or diet. I have learned many lessons the hard way, as there was not a lot of research on POTS at that time. I also did not have a doctor who knew enough to instruct me on what to do or how to do things. Finding the NDRF was one of the most helpful things for me. It had others who were going through the same challenges, and I found good advice on how to manage the illness. Support and learning about various medications and tricks are some of the most valuable tools you have to deal with this disorder. I think a competent doctor who specializes in autonomic disorders is probably a better asset. However, I have never had access to one of those doctors. I don't think I will ever know what caused my POTS onset. In addition to mono, I also had a neck injury and was under a great deal of stress both personally and professionally. I have been lucky enough to have a year or so of a remission when I returned to my old lifestyle. The pushing of my body mentally and physically, I believe, brought a return of POTS. So, I have learned to surrender to my new life and look for the warning signs that I am overdoing. Today I am about to return to work after another neck injury and huge exacerbation of POTS. I know great improvement is possible, as I have had it in the past and know others who are greatly improved. Although I don't think there are any magic answers, I know I have learned so many lessons from having POTS and it has made me a stronger individual. In the words of MLK: "The ultimate measure of a man is not where he stands at times of comfort and convenience but where he stands during times of challenge and controversy."