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Ideas and opinions expressed in Personal Stories belong to each individual author and are not necessarily those of the Dysautonomia Information Network. Personal Stories are in no way a substitute for professional medical advice, diagnosis or treatment. Readers should not try any treatments discussed in Personal Stories without first obtaining a physician's approval.

Heart Story

By Jolene
August 2005

I have been grateful for the personal stories on the website and find I can recognize a little of myself in all of them. I thought it was about time I provided mine.

I cannot pinpoint the exact time or day when things started to change in my life due to POTS.

I am 30 and married with 3 school aged children. In 1998 I had dental treatment and was overdosed on diazepam with 2 ampoules through IV, which was too much for my very slight body weight!  My breathing was compromised, an ambulance was called and adrenaline administered. I was admitted to a hospital overnight and discharged.

Just a note, before I go further, with all of my pregnancies I have suffered extreme hyperemesis which I recently read somewhere on this site is common with POTS.

When I think back on it now, I was suffering POTS symptoms for many years before finally stepping back and realizing something was not right with me. When you are young and busy with babies, it is easy to forget about your own health and ignore niggling symptoms which can easily be put down to tiredness from sleepless nights and having a young family. Another thing is we get used to feeling the way we do, and how do you define what is "normal"?

You should see my GP's notes!  In the end, I would be in tears saying something was wrong...but what.

I know that I have always been very thin, and no matter how much I eat I can not put on weight. I always felt good when pregnant (despite the hyperemesis!) due to the fact I had some meat on my bones!

It started with ectopic beats - flip flop heartbeats...and a racing pulse. That was my first indication something was not right. Once again, with a busy life and young babies, I ignored it. I would often, sometimes weekly, get sick; and I thought I was not getting enough sleep or eating the right foods.  My HR sits around 100-120 bpm, and when I am busy it can get up to and above 180 bpm.  My BP is all over the show, and I have given up wondering what it is now.

A few years ago, I was referred to Dr Jardine, based at Christchurch Hospital.  He diagnosed me with POTS. Due to my ability at that time to manage/cope with POTS, no treatment was given. I find some days I am worse then others. I can become tearful and frustrated on my bad days and find it hard to know if it is related to POTS or just an off day. Apart from that one day with the cardiologist, I have had no management of my condition.

Just lately I have found things have become much worse. I initially did not even consider it was POTS, but thought I had some terminal illness or I was losing my mind. Interesting to note that for as long as I can remember, I always sit down in the shower, as it is where I am most comfortable, and I feel less off balance. Fatigue has become worse even though my youngest has started school.  Where is the logic in that?

I feel more light-headed and dizzy even when just sitting; I feel a see-saw effect which is very scary. I am not moving bodily, but my head is! My blood pressure is low, even on Florinef.  We recently took a plane trip as a family, and I NEVER drink, but I felt so bad that I cried and asked for a double whiskey! Thinking back on this, it was POTS! I never considered it then. The downwards pressure was tremendous, and I really felt like I was going to pass out.  It was to the point on take off that I could NOT lift my head up from my chest. I also feel nausea most days and will wake up and dry retch at least once weekly. I cannot eat mince, cheese or anything fatty/spicy, or otherwise after a couple of hours of stomach cramps/pain I am physically sick. I have lost my appetite over the past six months and don't want to eat, but I do it out of necessity. This is sad as I used to have such a healthy appetite, and I could eat my husband under the table at buffets!

Lately, I have had tremendous pain in my legs (this is a new symptom for me) from hips down. It is very bad at night. I am petrified of developing CFS, as I know this can come on due to POTS. I simply do not have the time to be unwell! It scares me.

The house can be nice and tidy one day and a mess the next. What do I do?  I am angry and frustrated.  I feel old before my time.  These are meant to be my best days. I remember when I was younger and the kids were little my house was perfect. Not an item of clothing was to be seen, not a dish, not a toy, everything had its place, and I was the model mom. I sometimes wonder if I contributed to my POTS due to my super-mom mentality! You have to wonder!

I do not like taking medication of any sort, but lately I feel willing to try anything.  I feel my condition has certainly worsened since my diagnosis and have an appointment this coming week with my cardiologist, as I am feeling so bad.  Today is an off day, and what prompted me to write this is that I am so damned TIRED!! I want my life BACK!!

I feel for all of you and the hundreds of others out there who have yet to be diagnosed with POTS and who are possibly, like I was, wondering what the hell was wrong with them.

Strength to all :) xxx

Jolene

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My Dysautonomic Destiny

By Daniel Jacoby
June 2002

It was mid-1996. I'd just celebrated my 36th birthday. I had been in business for myself for almost 10 years and had a fantastic wife and daughter. Things in my professional and personal life were as good as they could be. My current company, which had only opened for business 3 short years earlier, was being bought by a public company and I would soon be able to take a few months off for a well deserved rest. Little did I know what the next few years would hold for me.

About a month into my 'rest' period, I noticed a very small lump on the lower right side of my neck. I walked into the Medical College of Virginia's Cancer Center on a Tuesday and asked if a surgeon was available to give me an opinion about the lump. As my wife and I stood in the lobby, the surgeon immediately identified the lump as thyroid cancer and asked when I would like to have it removed. I jokingly said, "How about tomorrow?", to which he replied, "fine". Before I could begin to worry about my newly-diagnosed health status, I was getting my pre-op testing done, stopping by the lawyers to make sure my will was in order and waking up at 4am Wednesday for my scheduled 6am surgery. Everything went fine. After a couple of weeks of recovery, they scanned me for remnants of the cancer but found nothing. This was a bonus, as I would not have to go through any radiation therapy. I had really dodged a bullet and had a fresh new perspective on life.

With my new lease on life, I started doing things I had wanted to do for years but just never took the first step. I started snow skiing as often as I could and my skill increased beyond my expectations. It was this new love for life that would ironically lead to what would become a fight that made my thyroid cancer battle look like a pillow fight.

I was on a ski trip with some high school friends in Steamboat Springs, Colorado, in February of 1998. I headed off on my own to the top of the mountain and found a great, slow paced slope that would provide almost an hour of leisurely skiing before I got back to the bottom of the slopes. It was to turn out to be anything but leisure. About halfway down the mountain I noticed a young inexperienced snowboarder at very high speed closing in on me. He was completely out of control and before I could even consider a way out, I was hit hard and knocked face first into the snow. My head made a violent motion backwards when my chin hit solid ground. At the time, I was able to shake it off and even continued skiing for the remainder of my visit. A month would pass before I would begin to see the signs of damage that had been done in the accident.

During March of 1998, I began to experience pain in my left arm, shoulder and neck. Not long after that, my lower back and right leg began to hurt a great deal. The pain became so great, that I visited a Neurosurgeon at the Medical College of Virginia, whom I still consider to be one of the best in the world. Following an MRI of my spine, he recommended against surgery because of my age and suggested that I try physical therapy instead. It took more than a year and a half, but the pain began to subside by the beginning of 2000. Unfortunately, I was about to start experiencing symptoms that I could not begin to explain.

As the pain in my arm, neck and leg subsided, I began to experience strange spasms in my throat, about every three weeks, that made me feel like I was choking. These episodes usually happened late at night or during sporting or other crowded public events. In September of 2000, I visited an Ear, Nose, and Throat specialist who diagnosed my problem as acid reflux and prescribed a daily dose of Prilosec. These intermittent episodes continued and, just before Christmas, I had an added symptom - the entire right side of my neck would be in severe pain and would often spasm for minutes at a time. At this point, I had no idea what was happening to me or in whom to turn. I just tried to relax and things seemed to stay in check. Until...

On Tuesday, January 16th, 2001, I was working about 130 miles from home on a project that required I keep a corporate apartment and be away from my family for 3 or 4 days each week. The weekend before I had experienced mild flu-like symptoms. Monday, I had an argument with a client whose business was doing poorly who refused to pay his invoices. Tuesday started with a poor nights sleep, a walk through icy snow to work and mounting pressure at the office. At 11am I had an instant major episode in my office which included a choking sensation, heat rush, dizziness, nausea and what felt like the flu being poured into my body. I did what I could to stand, did not even shut off my computer or grab my brief case and slowly trudged back to my apartment.

I had no idea what was happening to me. Lying down didn't help. A warm shower didn't help. I felt myself feeling close to passing out and propped myself upright on the sofa pillows. I held on for a few hours while taking in as much water and Gatorade as I could. I finally made it to bed, but was alone in the apartment far from home with nothing but cable TV and a cell phone. I remained in bed through four sleepless nights before mustering enough strength to drive the 3 hours it would take to get home. Within 24 hours of arriving home, I found myself at the local ER close to syncope at 3am. They diagnosed me with the flu, gave me some potassium tablets and sent me home.

I saw my PCP, who also made the same diagnosis. Knowing there was something more serious going on, I went to other doctors until I found one who actually did a "poor man's" tilt table test which showed my elevated heart rate from the lying down, sitting and standing positions. This was a major breakthrough, as I was soon able to investigate the world of Orthostatic Intolerance via the Internet and begin to find others that had very similar stories and symptoms to which to relate. I was also admitted to the hospital for EKGs, an Echocardiogram and a Tilt Table test

Even though I had been diagnosed relatively early on, my worst days lay ahead. No one in my hometown knew much about treating the symptoms of my syndrome. I became so bedridden over the coming months that I couldn't even lift my head off the pillow or move my arms without triggering my tachycardia. I also began to slowly lose my appetite and lost 50 pounds during a 3 month period. From late February through June, I was completely debilitated.

With an upcoming appointment to the POTS Promised Land of Toledo, Ohio, to see the famed Dr. Blair Grubb, I had a feeding tube installed so that I could regain some of my weight and get nutrients for the trip. Dr. Grubb was very thorough and I left knowing even more about what was happening to me than ever. My family life and business life were still on a downturn, for obvious reasons, and money was becoming an added worry for our family.

Continuing with the feeding tube, I slowly began to regain some of my strength and began slow physical therapy in August 2001. By the end of the year, I was able to slowly move around the house and work for short periods. I still could not ingest food orally and continued to have throat spasms that made me feel like I was choking. Before I knew it, I was taking 10mg of Ativan every day to help relax my throat muscles. While I was no longer bedridden, I still found myself mostly house ridden.

I also started learning more about Cervical Stenosis and how some patients with Dysautonomia found improvement through surgery, by having pressure on the cervical spine relieved. I was feeling optimistic about the future and the local newspaper even did a story on my situation (http://Eye-Q.com/news.asp), which probably became the first ever use of the words "autonomic nervous system" in any paper's business section.

In April of 2002, I followed the stories of several patients of Dr. Dan S. Heffez of the Chicago Institute of Neurosurgery and Neuroresearch, and decided to send my MRIs for his evaluation. On April 16th, I began a 2-day evaluation at CINN. While Dr. Heffez did not feel that my stenosis (compression of the spine) was as severe as many others he had seen, he sent me home with a custom fitted soft cervical collar and asked that I pay close attention to any changes in my symptoms. I found the collar to be a great help, with my neck and shoulder pain relieved. I was also able to begin sipping on soup broth and eventually began tasting pasta, mashed potatoes, scrambled eggs and even grits! I could supplement whatever I could eat with the feeding tube and began gaining weight back at a steady pace.

Six weeks after my evaluation at CINN, I called Dr. Heffez and requested a surgery date, which was to be June 6th (D-Day Anniversary!). The day before the procedure, Dr. Heffez called and suggested doing a bone harvest from my hip so that he would not have to use any metal, which would be stiffer and could put more pressure on the surrounding healthy discs. I agreed, knowing that my surgery would last longer and my recovery period would be extended and more painful.

Surgery lasted well over 5 hours but when I awoke, my hands and feet were warm for the first time in over a year and a half. I felt like I was hit by a truck, but knew I had made the right call. With a new found hope, and days and weeks of healing ahead, I am confident that I will improve and find relief from at least some of my remaining symptoms. While the anesthesia did a number on my digestive system, I am slowly gaining back some of my digestive functionality and can't wait to taste scrambled eggs again! Over the coming months, I will post my progress at http://Eye-Q.com/POTS/.

I know my business can wait, my wife and daughter are still by my side, and my health will continue to improve with time.

More Information:

http://www.CINN.org The Chicago Institute of Neurosurgery and Neuroresearch

http://Eye-Q.com/pots/ My personal online medical journal

http://Eye-Q.com/news.asp May 14^{th, 2002 article in the Richmond Times-Dispatch}

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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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Jennifer's Story

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. 

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