Stories page 4

Bridgette's Story

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 3^rd 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.

Back to top

Lori's Story

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 3^rd 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

Back to top

Cindy's Story: A Cross Country Adventure

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...

 Back to top

Karen's Story

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.

Back to top