Personal stories
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If you would like to share your personal story, please contact: Kristen (Personal stories can be about any form of dysautonomia)

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.

One of the Lucky Ones

By Michelle Sawicki
August 2001 

I was living a pretty normal life at the age of 27. I was married and had one child. We were saving to buy a house in the country. My husband and I got along well. Life was good and we felt blessed. And then I came down with a mysterious illness....

It started with sharp stabbing chest pain in January 1999. The pain came and went unpredictably for about a week and a half. I finally decided to see my doctor. He did a quick exam and said he thought I’d pulled a muscle. He prescribed a pain reliever and sent me home.

Then I developed tingling in my upper lip and fingers. Sometimes the top of my right leg felt numb. Sometimes my fingers felt numb. I thought it was strange, but not strange enough to go back to the doctor's office. 

I was hit full-blown by this mystery illness all in one day. It happened on February 10, 1999. 

I was feeling "wired" on that day. I did not have an appetite, and I was thirstier than normal. I was washing windows when I suddenly felt as if I could not breathe. Then I had a strong sensation to cough. My heart began to pound fast and hard within my chest. I decided to lie down. My heart stopped pounding, but it was still beating way too fast. Within a few minutes I was extremely nauseous. I also became very shaky. I felt terribly sick. It was the day a mysterious illness changed my life.

I spent the night in the emergency room. My heart rate was recorded at 150 beats per minute while I was lying down. An EKG revealed sinus tachycardia with ST and T wave abnormalities. My blood pressure was elevated at 140/75. I had a slight fever. Blood tests revealed some minor abnormalities. The ER doctor inferred little from these tests. I was sent home and advised to see a cardiologist.

I was lucky enough to be able to get an appointment for an echocardiogram at a cardiologist's office the next day. The echocardiogram revealed that I had mild mitral valve prolapse. I was prescribed a beta-blocker and sent home.

I spent the next month and a half bedridden. I was incredibly and completely exhausted. Slight minor movements sent my heart into tachycardia and exhausted me further. For instance, if I was lying in bed and just reached over to pick up a glass off the nightstand, I would feel extremely weak from the effort and my heart would race.

My body began to do some bizarre things during this time. Besides the constant fatigue, I was extremely thirsty. I could not drink enough water to quench my thirst. I craved and drank only water. I also completely lost my appetite and developed an aversion to sugar. My menstrual cycle became irregular. I experienced shooting pain down my left arm many times each day. It was a "funny bone" type nerve pain feeling. In addition to this, I experienced electric-like sensations in my chest many times each day.

I also experienced muscle cramps in my arms and legs everyday. The pinkie and ring fingers on my left hand tingled and felt slightly numb. At times I could not tell if water was hot or cold when I touched it with my fingers. My hands, feet and nose were always very cold. 

I lay in bed, day after day, knowing that something had seriously gone wrong within me. I also knew that my doctor was not helping me. I decided to see another doctor. This doctor was concerned about my declining health. He had me wear a heart monitor for the next 48 hours.

The heart monitor began to beep before I even got out of his office. It continued to go off almost every time I stood up. My heart seemed to be beating fine as long as I was lying down. Since I felt incredibly weak, I was lying down most of the time. Getting out of bed to use the bathroom was a major feat.

A few days later I returned to the new doctor's office to get the heart monitor results. The doctor told me that my heart was going into ST-segment depression and that this could lead to a heart attack. 

I brought the heart monitor results to my regular doctor the following morning. He could no longer deny that something was wrong with me. He set up an appointment for me to see yet another cardiologist. This doctor diagnosed me with supraventricular tachycardia and scheduled a stress test.

I took the stress test a few weeks later. The results were completely normal. Of course, I was very happy that they were. And yet, I knew these doctors were missing something. For one thing, I still suffered from overwhelming fatigue. I felt a little stronger each day, yet the majority of these days were spent lying down. I just did not feel "normal". I still had this incredible need to constantly drink water. I had spells of tachycardia everyday. My fingers still tingled and felt numb. My chest still felt as if it were burning. I often felt "wired". I had become highly sensitive to chemicals. I could not stand strong smells, especially perfumes. Nor could I stand bright lights or loud noises. I woke up each morning with my heart racing. My muscles twitched a lot. Sometimes I was short of breath. I experienced frequent nausea. I didn't sweat anymore. My temperature was often low. Some days I just could not warm up - even huddled under blankets. And while I often felt cold, I discovered I could no longer tolerate heat. A hot bath or room caused my heart to go into tachycardia. Even splashing hot water onto my face caused my heart to beat too fast. Some days I felt famished, others I had to remind myself to eat. I noticeably lost weight. Black dots frequently clouded my vision. I grayed out for a few seconds at a time. I would have to sit down very quickly when I grayed out because I felt lightheaded and faint.

It seemed everything in my body was failing all at once. People kept asking me what was wrong. Inevitably, I told them a few of the bizarre symptoms I was experiencing. I never even got close to telling them all. Who would have believed me? Who would have believed that so many things could have gone wrong inside of me all at once?

By now I had come to accept that my doctor and the cardiologists did not know what was wrong with me. I knew that whatever I had was rare. And so, I stepped off of the doctor carousel and began my own search on the Internet. I eventually came across a web site about a disorder called postural orthostatic tachycardia syndrome. I had many of the symptoms listed for this disorder and sought to find more information.

I contacted the National Dysautonomia Research Foundation and learned so much from the founders, Linda and Dan Smith. They helped me find a dysautonomia specialist who gave me an explanation for my mysterious illness. Eight months after the onset of symptoms I was officially "diagnosed" with orthostatic intolerance. However, my current neurologist believes that something other than just POTS is going on within me. He says that some of the symptoms I have had just don't fit.

It took about a year, but with lots of prayers and a modified lifestyle, I slowly began to recover from POTS. I am now able to work again. I feel vibrant and full of life again. 

I never returned to my "old self". Instead, I learned to adjust to life with this mysterious illness that came out of the blue and never fully went away. There are some things that I can no longer do, and I have to be careful not to push myself beyond my means. I no longer have the stamina that I once had. Still, for the most part, I have few symptoms and live a pretty normal life. 

Some patients with POTS don't ever improve, but I did. I am grateful for the many prayers and support I received. I know that I am one of the lucky ones. 

*Never stop searching for answers, never give up hope*

Update: In 2002 I had a positive nuclear antibody test, with a speckled pattern. I have not been diagnosed with a specific autoimmune disorder. In 2003 I was diagnosed with Classical Type Ehlers-Danlos syndrome, a connective tissue disorder that has been linked to orthostatic intolerance. 

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Dave's Story

By Dave
August 2001

POTS became my reality while I was finishing my last degree in college.  I would categorize the onset as sudden and slow. My first symptom was the inability to engage in normal fitness training.  I was heavily involved in triathlon sports and weight lifting.  Running became the first activity I was unable to perform.  Later, as the syndrome progressed, I developed several unusual symptoms:  numbness, increased and decreased sweating, inability to concentrate, fatigue, flushing after large meals/heat and difficulty with standing/walking.

Months later my doctor diagnosed me with an active mono infection.  This was a relief to me because it was a diagnosis I understood and felt I would recover from.  I rested  and assumed symptoms would abate.  Unfortunately they did not and things got worse.  My method of coping was to pretend I wasn't experiencing it.  I did not share what I was going through with my family or friends.

It quickly became something I could no longer ignore, and I began to get scared.  The doctor put me through a number of tests and procedures to check for a multitude of ailments.  He soon exhausted his knowledge base and began the typical suggestions that maybe it was all anxiety/depression.  I think this is when POTS became my biggest mental challenge.  I began to doubt my gut instincts that told me it was not just chronic fatigue or anxiety/depression. 

Anxiety was difficult to dispute because I was constantly anxious about what was happening to me and loosing my job.  Depression was also a reality, as I was mourning the life I once had and feeling mighty sorry for myself.  At this point, I knew I was going to have to find the diagnosis on my own.  A month or so after researching at the library I finally came across POTS and knew it was a perfect fit.

I learned to avoid the "crazy" diagnosis by leaving out some of the more unusual symptoms and reporting only major symptoms.  I brought in self-documented tachycardia responses to both sitting and standing  to a cardiologist.  I also brought in various research articles I found on POTS and pleaded for him to do a tilt table test.  He agreed with some arm-twisting and the diagnosis became official about a year or so after symptom onset.

I did not respond well to medications.  Side effects were too much for me at that point.  I researched and tried every herb I thought might be useful.  I eventually used only salt supplementation, exercise, and a majorly modified lifestyle.  I had to completely adjust at work by using a rolling stool and sitting for most of the time just to be able to get through the day.  At the end of each day, I felt like I had run a marathon.

I find exercise and salt supplementation to be most beneficial.  The muscular development of my body has given me back more orthostatic tolerance and energy than any drug has.  Exercise intolerance is very real for me, but I have learned how to adjust so I could workout, bike and swim again.  Discovering where the fatigue wall is with exercise has also been important.  There have been times, when I was bedridden, that I really needed to push beyond that wall to get back some orthostatic tolerance

Diet also seems to be very effective for me.  I have stopped eating sugar, yeasts, wheat, and dairy, which has maximized my energy and decreased bowel problems.  Grazing throughout the day instead of eating large meals has also helped.  My philosophy has always been to give my body the best environment to heal itself... be that with meditation, exercise, or diet.

I have learned many lessons the hard way, as there was not a lot of research on POTS at that time.  I also did not have a doctor who knew enough to instruct me on what to do or how to do things.  Finding the NDRF was one of the most helpful things for me.  It had others who were going through the same challenges, and I found good advice on how to manage the illness.  Support and learning about various medications and tricks are some of the most valuable tools you have to deal with this disorder.  I think a competent doctor who specializes in autonomic disorders is probably a better asset.  However, I have never had access to one of those doctors.

I don't think I will ever know what caused  my POTS onset.  In addition to mono, I also had a neck injury and was under a great deal of stress both personally and professionally.  I have been lucky enough to have a year or so of a remission when I returned to my old lifestyle.  The pushing of my body mentally and physically, I believe, brought a return of POTS.  So, I have learned to surrender to my new life and look for the warning signs that I am overdoing.   

Today I am about to return to work after another neck injury and huge exacerbation of POTS.  I know great improvement is possible, as I have had it in the past and know others who are greatly improved.  Although I don't think there are any magic answers,  I know I have learned so many lessons from having POTS and it has made me a stronger individual.  In the words of MLK:  "The ultimate measure of a man is not where he stands at times of comfort and convenience but where he stands during times of challenge and controversy."

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Sandra's Story

By Sandra 
September 2001

It all started at the end of January 1999 for me. I was 55 years old. I had been working at a University for 25 years. Two of the students that worked for me came to work sick. The virus soon spread to almost everyone in our office. I was the only one that suffered permanent nerve damage. I had vomiting and diarrhea and cold-like symptoms. I lost 14 lbs. in two days. I live alone and had trouble standing long enough to get food for myself. I did not want anyone else to come in to help me and be exposed to this also. My brother would leave Seven up and Gatorade by my door so I could try to keep from getting dehydrated. I was taken to the emergency room four times and they kept giving me fluids. I was in the hospital twice - the second time for 2 1/2 weeks. I did not get any better. I was going 10 days without a bowel movement even with heavy laxatives. (I still have to take laxatives, and my life revolves around when they will work). I could not eat and was loosing weight fast. I lost a total of 55 lbs. I have since gained some of that back. I spent 4 1/2 months bedridden.

My blood pressure on standing dropped to 23/14. Several times I felt as if I was going to die. I also have trouble with dry mouth and throat, which is part of the autonomic problems.

I passed out 5 times in the beginning. I would still pass out today if I didn't carry a little stool with me everywhere. I am not able to function at all without proAmitine and florinef. It is a struggle to do anything when I am upright, as I have to sit every few minutes. I had to give up my job and I had only 2 more years until early retirement. I had to move out of state, as I need the assistance of my family. I can no longer drive. I was fortunate enough to be able to go to the Mayo Clinic and was in a study for midodrine (proAmitine). Since my nerve damage is permanent (the virus attacked the nerves) I am at the mercy of researchers to find a cure.

I think it is important for people with dysautonomia to not give up hope. Even though everything becomes an effort - make that effort. I have made new friends since this, found love, and started a new hobby (making jewelry). I try to help other people as much as possible. You can always find someone that is worse off that you! If life hands you a lemon - make lemonade!

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Wish Upon a Star

By Bethany

Welcome, thanks for taking the time to read my story. My name is Bethany, and I'm nineteen-years old.

As I look up at the night sky, I always pick out one star that I make mine and that is the star that I wish upon. My wishes are so varied...I wish that I could somehow keep in contact with my friends from high school, I wish that I could remember what it was like to run, I wish that I could do all of the small things that you never appreciate until they are gone, but most of all, I wish that I could make a difference in the world.

Right now I am working on making that last wish come true by studying to be a special education teacher and working with young children with disabilities. The best times I have are those I spend with "my kids," because they accept me just the way that I am. They are wonderful! I believe that there is nothing better in life than to make a child smile.

Medical conditions have pretty much been a part of my life since I was born, so the transition from "healthy" to "sick" was more of a gradual change than a major transition. As an infant, I was what is called a "near-miss" SIDS baby. SIDS stands for "sudden infant death syndrome," and as you can see, I survived (thank God) but not without much emergency resuscitation. I would sometimes stop breathing when I slept, and nobody has ever figured out why. You can imagine how scary this was for my parents. Fortunately, I "grew out" of that medical problem!

What I did not grow out of were the constant difficulties that I had with my bladder. After a zillion tests, I learned that I had something called a neurogenic bladder, which means that it just does not respond the way it's supposed to when full of urine. And get this, at the age of eleven, I was also diagnosed with lupus, a strange condition in which the body attacks itself as if it were a bad germ. My mother has the same problem.

Though I grew up with these challenges, there were not many things I couldn't do. That is, until my senior year of high school, when I developed mononucleosis, and the virus that caused it, Epstein Barr, continued to hang around for a long time. My body just broke down under the weight of it all, and I missed almost three months of school, completely removed from my friends, the activities I loved, and the excitement I should have felt during my last year of high school.

Returning to school after a long time was very difficult because everyone else had all of these special memories of senior year that I didn't have, and sometimes it felt like they had forgotten about me. I was very lucky to have a great group of friends, though. They didn't treat me any differently because I was sick, and they did their best to get me out of the house whenever I felt able.

When you take steroids for a long time, one of the things that happens is that you gain weight. I learned to ignore the stares and comments about my appearance, but they still hurt. I did learn during this time that once people understand why someone is different they often are able to accept those differences better.

During this year of being sick, one of my wishes came true. While my teachers at school questioned whether or not I would be able to graduate, I had been busy making plans for the next year. And guess what? I not only graduated from high school, I graduated fourth in my class and received a full tuition scholarship to Vanderbilt University.

Unfortunately, my medical litany did not end in high school. Right before college, I was diagnosed with fibromyalgia (a muscle pain disorder), chronic fatigue, Hashimoto's thyroiditis (an autoimmune disease where my body attacks my thyroid gland), sinus node tachycardia (my heart races without any reason that I can figure out), and neuropathy (a loss of sensation in my hands and feet).

All of these problems have made college life very difficult for me. I struggle to get my class work done, which leaves little time for a social life. I have not yet been on my first date, and sometimes I wonder if anyone will ever want to date someone with so many problems. But then I try to focus on today, right now, and the things I can control. I'm learning to be an advocate for myself and to speak up when I need to . . . not easy when you are painfully shy.

From the sounds of it, my medical problems seem to play a big part in my life, but that is actually far from the truth. They are a part of who I am, but I am so much more than a bunch of diagnoses. I still try to do all of the things that I enjoy, like listening to music, writing, working with children, and collecting frogs (even though I am actually terrified of the real ones).

It is not easy growing up with a chronic illness. But as a result of all my experiences, I have learned who my real friends are. I have become even closer to my mom, my best friend of all. And I have come to the realization that though I wish there were cures for my problems, I know that regardless, I am OK, and that when I wish upon a star, many of my wishes can still come true.

Update: Hooray, just finished my second year at Vanderbilt! On the medical front, my heart condition has officially been diagnosed as POTS (postural orthostatic tachycardia syndrome) which is related somehow to the Chronic fatigue syndrome. I've also acquired some new diagnoses involving an assortment of knee problems including arthritis and chondromalacia. Unfortunately, these require braces, PT and meds and may require surgery if the less invasive things don't work.

The new labels for my problems don’t really change anything, I am still me no matter what diagnosis they place on it and my life continues on no matter what. It is more a comfort knowing that there is a name/names for what is going on and that someone believes me...there is nothing worse than doctors that refuse to listen or say it's all in my head. As far as I am concerned, the labels are just convenient ways for doctors to share information on medical conditions...I am not a lupus, a fibromyalgia, a POTS, an insulin resistance, an arthritis. I am a person with lupus, a person with fibromyalgia, a person with POTS, etc and they are only a small part of who I am. I wish people could see past their symptoms, the differences, and see all of the similarities between them and me. Perhaps I may never be able to run or jump, to be a perfect size 8, or to fit the image of "normal" but I am myself and right now that seems to me to be a pretty good person to be.

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