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  • The Member Stories section of our site is a place where members can submit their own 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. 

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One of the Lucky Ones


edriscoll

By Michelle Sawicki
August 2001 

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.

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