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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Member Stories

edriscoll
By Debbie Henrie
May 2004
I have had medical problems most of my life.  I can remember as a child missing a great deal of school due to stomach aches, sore throats, and other various aliments. In third grade I broke my arm, had a large juvenile abdominal polyp removed, and got scarlet fever.  This happened all in the space of about two months.  I got car sick every time we went anywhere and was very small and underweight for my age.  In third grade, I wore a size six dress.  At age two, while a sitter wasn't paying attention, I got into two bottles of baby aspirin and ate them all.  I was on a ventilator for three days, and the doctors said I wasn't going to live.  When I did live, they said I was going to have irreversible brain damage.  I kid with people now that that's my problem.  However, sometimes I wonder.....

In the 4th grade, I had severe stomach problems.  I vomited at least two to three times a week and always had heartburn or an upset stomach.  When my mom finally took me to a doctor, he told her I was an attention seeker, and it was working.  That was the first time I heard that, but it certainly wasn’t the last.  Therefore, my mother decided the only way to stop me from this bad behavior was to force feed me laxatives every time I complained or threw up.  I couldn't do anything about the vomiting but, believe me, I stopped complaining.  I would have diarrhea for months, and I'm sure I was dehydrated most of the time.  I suffered from vertigo even back then. My sister fainted quite often, and she was provided more attention.  She seems to have grown out of it, and has had no problems in her adult life except for autoimmune disease, but she has no symptoms of POTS.



       
As a teen, I could not keep up in P.E. or any sports.  I never had any stamina.  I couldn't believe the energy that kids my age had.  I was always plagued with fatigue.  No matter how much I slept, I was always tired.  However, I went to school and worked a fulltime job starting at 14.  I married right out of high school and went to college to study nursing.  I went to school five days a week, eight hours a day, and then worked two ten hour shifts as a waitress on the weekends.  I can remember being at my parents’ house and falling asleep during dinner and my face landing in my plate! 
       
We moved after graduation to a small town in Idaho.  I got a job at the little 15-bed hospital there.  I was so exhausted I could barely get to work.  They would call to see if I would work, and I would beg my husband not to answer the phone.  He was not an understanding person.  He said if I wasn't so lazy and worked more I would feel better.  So, I worked more and felt worse.
       
I became pregnant at 21, and that's really when I noticed a lot of weird symptoms.  The fatigue was unbearable, all my joints hurt, I was so anemic, and I was always lightheaded.  I noticed that often my heart beat too fast, but I attributed it to the anemia.
       
After a very stressful and painful divorce, I got down to 75 pounds because of my stomach bothering me so much.  I hurt everywhere, was always dizzy, and everyday I thought I wouldn't make it through work.  But, I got up every day and forced myself to go. 
       
After I married my second husband, I did well for a while until we moved to Spokane.  I believe the stress of the move, plus my husband’s inability to get a job, flared up everything I'd ever had in my life.  I was working at a large hospital on a cardiac floor, and it was very stressful.  I went to four or five different doctors, but they said I had too many symptoms to have anything but psychiatric problems, and was offered antidepressants.  I politely refused and realized I really was crazy. One day at work, I was talking to another nurse, and she said she had all the same symptoms.  I was shocked.  She recommended a new doctor just starting his practice.  I was skeptical and very nervous.  He was beautiful and wonderful, and he is still my doctor after 19 years!  He diagnosed fibromyalgia, but he ran a number of tests to rule out other things.  He said I was not crazy, but I had a disorder that can drive you crazy.  Finally, I had a diagnosis. 
He put me on a TCA to help with my frequently interrupted sleep patterns, but after a few weeks, I noticed that my heart was always pounding.  I went in to see him, and he immediately weaned me off it.  My rate slowed, but we discovered after that experience that there were a lot of meds out there that caused me to have tachycardia.  We steered clear of them.
       
In the early 90's, I was diagnosed with possible Meniere's Disease and placed on a diuretic.  It is the first line of treatment for this disorder.  I asked the neurologist if I needed a potassium supplement.  He said the dose was so small, and it would be impossible for it to affect it. Well, after two doses my potassium was less than two, and I was headed for a cardiac arrest.  I couldn't even take a k+ sparing one without needing IV replacements.  So I just lived with Meniere's Disease too and dealt with the attacks when they happened.  We were discovering I had very little tolerance for most drugs.  My doctor started giving me ½ to ¼ the usual dose of meds.
       
In 1996, while on a blood mobile run, I was doing a history and suddenly my heart started pounding, I got hot and sweaty, and I thought I was going to either pass out or throw up.  Someone took me back to the blood center, and my BP was 180/100 with a pulse of 180.  I have never felt so terrible.  I went to the doctor, and he thought it might be a fluky thing, but he tested me for pheochromocytoma. It was normal, of course.  I started having these episodes all the time.  Always the same, pressure in my throat and head, BP skyrocketing, nausea, and then after about 1/2 to one hour, everything calming down but leaving me completely exhausted.  I got an event monitor, and it just showed sinus tachycardia and pac's.  The doctor put me on three different meds I didn't tolerate, and then he tried atenolol 12.5.  I felt much better except I was even more fatigued and found myself waking up at night feeling like I hadn't taken a breath in five minutes.  But it did curb those awful attacks, so I just dealt with it.
       
In the fall of 2001, I started becoming very short of breath with the slightest exertion, and was having a lot of breakthrough tachycardia. I really felt awful; I had to cut back on my hours. I decided I was just fat and out of condition, so I bought an elliptical machine to lose weight and get in shape.  That was in November.  In March 2002, I was still only doing three minutes a day on that darn machine.  I got so short of breath and tachycardic, I just couldn't breathe.  I went to see my doc, and he started what became every test known to man on me.  I had a thallium treadmill which showed ischemia. This led to a heart cath that showed normal vessels.  My ejection fraction was 80, which is on the high side.  I did a cardiopulmonary treadmill, and it was discovered that my heart rate at rest was 120, but one minute after starting the treadmill, it was 190.  The doctor said stop.  He told my doctor there was something wrong with my sinus node.  That I was not conditioned, but it would be impossible for me to get conditioned.  They decided I had Inappropriate Sinus Tachycardia.  Then on to an electro physiologist, who actually was the first to really discuss in depth autonomic dysfunction.  I had never heard of it, and my internist wasn't very familiar with it. 
I had a stress and non-stress echo which showed hypertrophy from having so much tachycardia and HTN, and a mild mitral regurge.  I had a tilt table in February 2003.  Although it was negative, my heart rate shot sky high, as did my blood pressure.  So, I've never fainted.  This drove the cardiologist crazy, because he said everything pointed to POTS, but I was never syncopal or even pre-syncopal.  They decided I should have an ablation, because my heart was already starting to suffer from the prolonged tachycardia.  I did not want to do this at all, and I had a very bad feeling about it.  But the cardiologist, my doctor, my hubby, and my gastro all said it was the way to go.
       
I worked a 14-hour day on March 17, 2003.  I had a 6-hour EPS and ablation on March 18, 2003, and I have never worked again.  The ablation only lasted 10 days.  I have constant arrhythmias now including PVC's, which I didn't have before the ablation.  I got disability on my first try.  My blood pressure is now considered malignant hypertension, and they can't get it under control.  I have severe emotional swings, and there are days where it takes all I've got to get up just so I can go lay on the couch.  I started looking up everything I could on dysautonomia.  However, it is difficult to find a lot of information for people who don't pass out and have very high BP's all the time.  I called NDRF and they sent a ton of information.  My doctor, bless him, poured over it.  He sent me to a nephrologist. All four or five of my docs agreed that I was way too complex for anyone in the region I live in.  The literature, unfortunately, said ablation is almost always contraindicated in people with my symptoms.  Oops, it's the only way my body can compensate.  So, they all contacted Mayo and requested I be seen.

Mayo rejected me because I have chronic fatigue.  Dr. Robertson at Vanderbilt is looking at my records now and believes I have baroreflex failure.  We are hoping to get me into a research program there.  I am following his protocol for now.  I have been diagnosed with orthostatic tachycardic intolerance, severe reflux and poor motility.  I have Barrett’s esophagus from all those years of "make believe" stomach aches.  I have lost over 30 pounds since November because my esophagus no longer contracts like it's supposed to,  IBS, colitis, Meniere's, vascular collagen disease, FMS, malignant HTN, arthritis, and hypertrophy of the left ventricle.  At this point, I know my time is limited, but I would really like to get into Vanderbilt because baroreflex failure is very rare.  My doctor believes I have many overlapping features of dysautonomia among other health problems.  It would be nice to know that my suffering, if researched, could help someone else, as it is probably too late for me.  That would give me the faith to believe there is a reason it has happened.  Gosh, and that's it in a nutshell....
edriscoll

Kathy's Story

By edriscoll, in Member Stories,

By Kathy Howell, Ohio
January 2004

My name is Kathy.  I am approaching my thirtieth birthday this year, and I have been living with POTS since October 2001. 
I went to have what I thought was a simple knee surgery.  It turned out to be anything but simple.  Within days of my surgery I began experiencing rapid heart rate and shortness of breath.  At first the doctors thought that it was caused by blood clots in my leg and my lung, but even after those were dissolved I was still symptomatic.  This lasted for eight months without any doctor being able to tell me what was going on. 
Besides these symptoms, I had no energy or any desire to do anything.  It was completely frustrating and aggravating.  At the insistence of my employer, I was sent to a cardiologist in Columbus, Ohio.  It was then that I was finally diagnosed with POTS.  Unfortunately, although I had a diagnosis, they couldn't help me either.  The regimen of medicines they put me on did not work.  It made me depressed.  I knew that without some kind of improvement in my health I would not be able to return to my job as a corrections officer. 



By July 2003, the cardiologist I was seeing had run out of options and scheduled me to see Dr. Blair Grubb in December.  I had no idea how I was going to survive those five months.  I left it all in God's hands and went on vacation. 
Returning from my vacation, I went to my regular family physician.  I couldn't handle the depression anymore.  He said he had just read a medical journal article by Dr. Grubb that would help me.  It turns out that the same drug my physician wanted to use for my depression would help me with the POTS.  I agreed to try it.  It couldn't be any worse than what I was already experiencing, I thought.  Turns out it was a good decision to try it.  That was in August 2003, and by November 2003 my health had improved so much that I could return to my job.  Two months have gone by, and although I can't perform my job quite 100% effectively, I am doing quite well.

I had absolutely no idea such a syndrome existed.  Until I got sick, I had never heard of it.  It wasn't until this past December that I knew what had caused all the problems in the first place.  I have a subdivision of POTS, known as Joint Hypermobility Syndrome.  It means that there is not enough firm collagen in my joints and blood vessels for them to perform accurately.  The reason that it wasn't discovered earlier is that the muscles in my legs were overcompensating for the lack of firm collagen.  When I became unconditioned due to the blood clots, that's when all the problems began. 

I believe that more needs to be done to get the word out about these syndromes.  Until this all happened to me, no one I knew had ever heard of it.  You see people on talk shows all the time discussing many different diseases and syndromes.  I wish that we could use these avenues to inform the world.  Without the information, there is no hope for better care for us.  Getting the word out may also help someone out there who suffers from these same symptoms but also has no idea this syndrome exists.  Many cardiologists don't even know about it.  Remember, if not for my family physician, I have no idea if I would be back to work right now or not.  If there is anything I can do to help pass along this information, I would be more than happy to do it.  I just don't know where to start.  Any help would be appreciated.

I can be reached at KATHOW23@aol.com if anyone has any ideas on how to spread the word about this syndrome.  For those of you who also suffer with the symptoms of this syndrome, my heart is with you and may the good Lord bless us all.
edriscoll

Katherine’s story

By edriscoll, in Member Stories,

By Katherine
January 2004
I have had mild POTS symptoms since the early 1990’s when I was in my early 20’s.  The symptoms started while I was a Peace Corps volunteer in Africa.  They were mild, came and went and I didn’t think anything of them.
In 1999 I had episodes of prolonged tachycardia, chest pain, fatigue, tremor, and anxiety.  My general practitioner diagnosed me with anxiety, and found that I had an under active thyroid due to Hashimoto’s – autoimmune thyroid disease.  I started treatment for Hashimoto’s and my POTS symptoms gradually disappeared.
Then I got pregnant in 2002.  This is when everything changed, and it was clear something else was wrong.  I remember one day at work—I was about 4 1/2 months pregnant -- I was trying to lift a sheet of paper from a printer, and I felt so weak I had to sit down.  The next day I was in a conference phone call, and I suddenly felt so dizzy and weak and my heart was beating so fast I had to hang up.  I laid on the floor at work for an hour, and then my husband came to get me and we went to my ob/gyn. 



She was concerned I had an undetected cardiac problem and sent me straight to a cardiologist.  He ran some tests and concluded that I wasn’t exercising enough and was anxious.  Over the next weeks my condition deteriorated further, until I was nearly constantly dizzy.
I talked to my endocrinologist, who suggested I try to add more salt to my diet.  This did the trick!  Within several days I felt almost normal again.  By the 7th month of my pregnancy, though, I was too exhausted to work anymore and was having dizzy episodes.  I stopped working and was at home, sleeping a lot.  My ob/gyn just said it was normal to be tired in late pregnancy and that I was too demanding of myself.  I didn’t know anyone who had been this tired though.
My daughter was born at term, 10 lbs, 2 oz, 22 inches long, by C-section due to placental abruption that nearly killed both of us.  My blood pressure went sky high during labor.  I lost so much blood I had to have a blood transfusion.  I was sick in bed post-partum for months.  I managed to nurse my baby for four months, but did very little else.  Every doctor I saw told me I had severe post-partum depression and needed treatment.  I finally agreed to see a psychiatrist who determined I had no depression, but an undiagnosed medical condition. 
Eventually, I became so weak I was unable to walk and at times unable to sit up.  My husband carried me to the ER, literally, on three occasions.  On the third occasion, I was admitted to the hospital and finally diagnosed with POTS.  My doctor (a partner of the cardiologist who diagnosed me with lack of exercise and anxiety) started me on 20 mg of Prozac and 10 mg of Pindolol.  By August 2003 I was stronger and back at work part time. 
I have relapses of the symptoms that scare me, and I am not as well as I was prior to pregnancy.  I have limited exercise tolerance and get tired easily.  I do yoga every day and walk several days a week with my daughter in a stroller, but anything more aerobic still seems a strain.  I find that eating too much sugar, not getting adequate sleep, too much stress, a minor medical procedure—any of these things--can set me back.
Overall, I feel optimistic about my long-term recovery, although I have also accepted that I have to make some lifestyle changes.  I have also learned that illness can be a blessing.  I have discovered that it is possible to take one day at a time, sometimes just one breath at a time, although this is not always easy.  I have found how important my family is to me and what special people they are.  The world around me seems more alive and intense than ever, and I take pleasure in the small details of life that I might have otherwise taken for granted.  Life seems so precious, and the ability to enjoy it is a blessing.
edriscoll

Emma's Story

By edriscoll, in Member Stories,

By Emma Nicholson -from Ipswich in Suffolk
December 2003

As a teenager at high school I experienced some "dizzy and blackout spells". The doctor said they were due to hormonal changes and left it at that. Overall, I was pretty well and the dizzy spells seemed to settle down. I left high school at 16 years old healthy and happy.
I started training for my job, which was working with drug-addicted children in a crisis unit. Things were going well until I fell ill one day at work with stomach pains. I was rushed into hospital where I underwent an operation to remove a burst appendix. Soon after that I was fighting an infection, which left me in hospital for six weeks.

Once I was discharged from hospital I was feeling pretty well and had settled back at home with my parents. Two weeks later I started experiencing extreme dizzy spells upon standing. I was also passing out. I was then taken back into hospital where the long journey to discover what was wrong with me began!




The blackouts got so bad that I could no longer stand at all, and also transferring became a problem. I was then put on complete bed rest or Hoist transfers only. This lasted for three months. The hospital was stunned with what was happening to me. They sent me for blood tests, scans and other tests to try and find out the root of my problem.

The tests started to come back absolutely fine and tongues started wagging. "Is this girl crazy?" people started asking. This became a very stressful time, as I did not know what was affecting me in such a dramatic way.

I was then referred to Queens Square in London where I was diagnosed with POTS. I had many tilt tests, breathing tests, heart rate tests and heat tests. I stayed in hospital for a year and three months with this condition, where I had physio, medication trails and time to help me adapt to being in a wheelchair.
I have this condition so badly that I use a wheelchair all the time, as I blackout as soon as I go to stand. I take 97 tablets a day to try and maintain a blood pressure, as it drops to as low as 49/60. I take beta-blockers to slow my heart rate and other medications to increase my salt levels, etc.

The dyautonomia has affected my blood pressure, heart rate, stomach-I now have to have a syringe driver set up every night with anti sickness medication as my stomach no longer empties properly. I am waiting for a drainage procedure to be done, but there is a problem with my being put under anesthetic. I have a long-term catheter due to retention problems.

I know the above doesn't sound that hopeful, but I must add that I am now twenty; I have an adapted bungalow and have some really great caregivers. I am back at work now and studying for a degree in alcohol and drug counseling. I am very happy and making the best of the situation. 

edriscoll

Karen's Story

By edriscoll, in Member Stories,

By Karen Hope
December 2002
I am an "all-American" blond, blue-eyed, 25-year-old who, for the most part, enjoys a full, active, and wonderful life. However, I was diagnosed with dysautonomia last year in 2001. I had never heard of dysautonomia before this time.
I wanted to tell my story here because my experience with the condition seems so different than many of yours. When I was a child, I would occasionally lose consciousness - often at grocery stores, malls, and during holiday time. When I was about 10, I saw a neurologist and had an EEG to test if my brain waves were normal. I suppose they were, because the neurologist believed I was simply sensitive to stress. Although she ended up being right, she apparently missed other factors in the equation and I was never treated for anything. The fainting spells, which had occurred about once every year or two, seemed to disappear for awhile in my early teens.
When I was 16, everything changed. One night after a long and tiring day at an amusement park (where I got sunburned and drank caffeinated soda all day long), I started to feel faint at a friend's house. It was 4 a.m. and I was overly tired. I started feeling nervous that I wasn't feeling well, and before I knew it, I fainted and woke up on the floor with my friends surrounding me. I was taken to the hospital where they released me, chalking the incident up as me being dehydrated and tired (which I had been). No one probably ever thought to check my heart because I was young, extremely athletic, and have no family history of heart disease or any cardiovascular problems of any kind.


 
I fainted again when I was 18 during a severe head cold. A doctor finally started to look into my mysterious episodes when I passed out again my sophomore year at college, when I was 19. I was referred to a neurologist, who gave me an EEG and diagnosed me with epilepsy. I was placed on Dilantin, an anti-convulsant, for several years ... I remained episode-free during this time.
My fainting spells changed the way they affected me when I had gotten farther into my teens. When I was a child, I would faint, and although shaken, I could easily get back up and walk around. Starting with the fainting spell when I was 16, I would wake up from fainting and be on the verge of being physically ill. I was extremely nauseous, and even lifting my head made me feel worse. I also began losing control of my bladder during the episodes. I typically didn't start feeling myself for a good 24 hours after bed rest and hydration.  The doctors found this odd, as hydration tends to not help those with epilepsy.
After I graduated college in 2000, I moved up here to Cleveland - home of the Cleveland Clinic, the top-rated heart hospital in the country (and one of the best in neurology). I immediately found a neurologist and he asked that I have another EEG. He found the EEG to be perfectly normal and recommended I see a cardiologist ... he told me it was fairly common for people to be misdiagnosed with epilepsy, who really have a heart condition. I saw a cardiologist here, who ordered up tons of tests, including a tilt test, a 48-hour heart monitor, an echocardiogram, and other tests that I can hardly remember ... I know one tested the rate with which my blood circulated throughout my body (which ended up 3x the normal rate), and another was a stress test in which they injected medication to purposefully increase my heart rate.  After about 10 minutes in an upright position on the tilt table, I began to pass out, but they stopped the test just before I did (thankfully). I can stand up for hours and be fine, but I was extremely nervous and tense during this test - which I'm certain was the indirect cause of my near fainting episode. My echocardiogram thankfully ruled out malformations or disease, and the holtor monitor showed a fairly normal heart rate.
I am now taking a beta blocker, as well as a medicine typically used for digestive disorders (hyoscyamine). I run nearly 4 miles a day and lead a very active and healthy lifestyle - which I am so blessed for. Other than my mother recently being diagnosed with mitral valve prolapse (she is 60 years old and symptom-free), no one in my extended family has had any heart-related conditions. I believe, however, that my condition of dysautonomia is directly linked to the way my body reacts to stress.  I cannot emphasize this enough. Intensely stressful situations are the only factor that have been present during every fainting episode.
I exercise regularly, eat a low-fat diet, stay away from caffeine (except chocolate), and try to keep stress at bay to help improve my quality of life with dysautonomia. I admit that I often enjoy a glass of wine when I feel tense or very stressed because it tends to slow my heart rate when it is getting too high. I count my blessings everyday that I have not had an episode since December of 1998.
I know everyone's body reacts differently to dysautonomia ... I am curious if any of you lose consciousness under particularly stressful situations - and if you feel horribly nauseous after a fainting episode, as I do.  You could reach me at: khanson27@hotmail.com. I wish you all the best - and thank you so much for having read my story.
edriscoll

Bridgette's Story

By edriscoll, in Member Stories,

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.
edriscoll

Janet's Story

By edriscoll, in Member Stories,

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.
edriscoll

Jennifer's Story

By edriscoll, in Member Stories,

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.

edriscoll

Lori's Story

By edriscoll, in Member Stories,

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
edriscoll
By Cindy Weber
November 2002
My name is Cindy Weber. I was diagnosed with POTS in 2000, my sophomore year of high school, at age 16. My diagnosis was a scary situation, and it included kidney failure.
I have always been a cross-country and track runner, and I've always been rather talented. Ever since I can remember, though, when I finished running I was always pale. I thought this was weird because the other kids were always flushed and red, whereas I looked like I had just seen a ghost. It never hindered my running, though, so we just laughed and I thought nothing of it.
Sophomore year, at the Regional Cross-Country meet, I got really sick. Several other times before in the season I had passed out after the race, ending up in an ambulance because my heart was racing at 200-250 beats per minute. My heart would beat too fast for a whole hour after the race, and I usually felt sick after I finished running. However, I was motivated like heck, so I kept running. I got 5th place in my league and 13th in my district. I was running really well and my coach was happy. We were expected to make it to States (OHIO) that year. At the regional meet, though, I fell apart. I got to the second mile marker and the world started to spin. My legs felt like lead and I lost my sense of balance and control. It took me over 10 minutes to run that last mile, and it usually only takes about 6 minutes. I could not hear anything, I could barely see, and I did not know what was happening. I could feel my heart about ready to pop out of my chest. I was almost to the finish line when I collapsed. The officials would not touch me, though, because I was still in the race. So, they let me crawl across the finish line. I put my hand on the white line and blacked out.


 
I woke up later surrounded by EMTs. It was very scary. My heart was racing and I was really winded.
That night I threw up blood, and my mom took me to the hospital. I spent a week in the hospital, in the pediatric intensive care unit, and then on a regular floor. They figured out that my kidneys had shut down. The doctor said that my heart had started beating so fast because it wasn't getting enough blood. The blood was pooling in the veins in my legs and not enough was getting back to my heart. So, in order for the heart to get its needed blood it started shutting down other organs, like my kidneys. I'm glad it did that, though, instead of going into cardiac arrest or something.
I saw a kidney doctor on a regular basis for awhile. Then I went to a cardiologist, and he found nothing, so I went to a neurologist. It took months for them to finally figure out what was wrong with me. I went through a lot of tests, gave a lot of blood, etc, and finally they diagnosed me with POTS.
I was given a beta-blocker, Nadolol, which I still take two years later. They also have me taking 8 grams of salt a day, which I do not like at all.
I am back running competitively again, and that impresses my doctor. He says that because I'm so young I have responded well and it’s not affecting me too much. I still get dizzy though, and I still have a fear of just dying when I run. I try not to let that stop me. I just run through it, but every time I feel my heart start to race I get scared.
My illness has made me want to go into medicine. I have applied to colleges as pre-med, and next week I have 3 interviews at a medical school that accepts college freshmen into an accelerated program and guarantees them a seat in the medical school. I am very excited. I guess getting diagnosed with POTS has had its pluses too...
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