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.
By Michelle Sawicki
I was living a pretty normal life at the age of 27. I was married and had one child. My husband and I got along well. We were saving to buy a house in the country. 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 an explanation for my mysterious illness. Eight months after the onset of symptoms I was officially "diagnosed" with orthostatic intolerance.
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.
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 2003 the mystery surrounding my development of POTS was solved. I was diagnosed with Classical Type Ehlers-Danlos syndrome. People with Ehlers-Danlos syndrome (EDS) are born with abnormal connective tissue, which basically is the "glue" that holds your body together. Some people with EDS experience excessive amounts of blood pooling in the lower limbs when they stand because their blood vessels are too stretchy. This results in certain areas of the body being filled with too much blood while other areas have too little. The sympathetic nervous system kicks into overdrive in an effort to regulate blood disbursement.
There is no cure for EDS or POTS, but I am doing extremely well. While my POTS is obviously genetically based, I am living proof that one can become extremely ill from a genetically based illness and then experience a remarkable recovery. Research has shown that there are a magnitude of situations which can exacerbate POTS symptoms. At the time I became ill I was eating a low salt diet, not staying well hydrated, taking herbal supplements which may have had vasodilating effects, I wasn't exercising, and I may have been recovering from a common cold or flu virus. I believe these factors probably led to my body no longer being able to adjust to the challenges of faulty collagen. Over time, my body regained the ability to better adjust to the challenges of pooling blood. I now also know what helps POTS symptoms and what to avoid, which helps greatly. I shared those things when I created this website. It is now 2010, and I am doing great! I wish you all good health.
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!
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.