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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. 

Janet's Story


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.

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