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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. 

Karen's Story


edriscoll


By Karen Hope
December 2002

I am an "all-American" blond, blue-eyed, 25-year-old who, for the most part, enjoys a full, active, and wonderful life. However, I was diagnosed with dysautonomia last year in 2001. I had never heard of dysautonomia before this time.

I wanted to tell my story here because my experience with the condition seems so different than many of yours. When I was a child, I would occasionally lose consciousness - often at grocery stores, malls, and during holiday time. When I was about 10, I saw a neurologist and had an EEG to test if my brain waves were normal. I suppose they were, because the neurologist believed I was simply sensitive to stress. Although she ended up being right, she apparently missed other factors in the equation and I was never treated for anything. The fainting spells, which had occurred about once every year or two, seemed to disappear for awhile in my early teens.

When I was 16, everything changed. One night after a long and tiring day at an amusement park (where I got sunburned and drank caffeinated soda all day long), I started to feel faint at a friend's house. It was 4 a.m. and I was overly tired. I started feeling nervous that I wasn't feeling well, and before I knew it, I fainted and woke up on the floor with my friends surrounding me. I was taken to the hospital where they released me, chalking the incident up as me being dehydrated and tired (which I had been). No one probably ever thought to check my heart because I was young, extremely athletic, and have no family history of heart disease or any cardiovascular problems of any kind.



 

I fainted again when I was 18 during a severe head cold. A doctor finally started to look into my mysterious episodes when I passed out again my sophomore year at college, when I was 19. I was referred to a neurologist, who gave me an EEG and diagnosed me with epilepsy. I was placed on Dilantin, an anti-convulsant, for several years ... I remained episode-free during this time.

My fainting spells changed the way they affected me when I had gotten farther into my teens. When I was a child, I would faint, and although shaken, I could easily get back up and walk around. Starting with the fainting spell when I was 16, I would wake up from fainting and be on the verge of being physically ill. I was extremely nauseous, and even lifting my head made me feel worse. I also began losing control of my bladder during the episodes. I typically didn't start feeling myself for a good 24 hours after bed rest and hydration.  The doctors found this odd, as hydration tends to not help those with epilepsy.

After I graduated college in 2000, I moved up here to Cleveland - home of the Cleveland Clinic, the top-rated heart hospital in the country (and one of the best in neurology). I immediately found a neurologist and he asked that I have another EEG. He found the EEG to be perfectly normal and recommended I see a cardiologist ... he told me it was fairly common for people to be misdiagnosed with epilepsy, who really have a heart condition. I saw a cardiologist here, who ordered up tons of tests, including a tilt test, a 48-hour heart monitor, an echocardiogram, and other tests that I can hardly remember ... I know one tested the rate with which my blood circulated throughout my body (which ended up 3x the normal rate), and another was a stress test in which they injected medication to purposefully increase my heart rate.  After about 10 minutes in an upright position on the tilt table, I began to pass out, but they stopped the test just before I did (thankfully). I can stand up for hours and be fine, but I was extremely nervous and tense during this test - which I'm certain was the indirect cause of my near fainting episode. My echocardiogram thankfully ruled out malformations or disease, and the holtor monitor showed a fairly normal heart rate.

I am now taking a beta blocker, as well as a medicine typically used for digestive disorders (hyoscyamine). I run nearly 4 miles a day and lead a very active and healthy lifestyle - which I am so blessed for. Other than my mother recently being diagnosed with mitral valve prolapse (she is 60 years old and symptom-free), no one in my extended family has had any heart-related conditions. I believe, however, that my condition of dysautonomia is directly linked to the way my body reacts to stress.  I cannot emphasize this enough. Intensely stressful situations are the only factor that have been present during every fainting episode.

I exercise regularly, eat a low-fat diet, stay away from caffeine (except chocolate), and try to keep stress at bay to help improve my quality of life with dysautonomia. I admit that I often enjoy a glass of wine when I feel tense or very stressed because it tends to slow my heart rate when it is getting too high. I count my blessings everyday that I have not had an episode since December of 1998.

I know everyone's body reacts differently to dysautonomia ... I am curious if any of you lose consciousness under particularly stressful situations - and if you feel horribly nauseous after a fainting episode, as I do.  You could reach me at: khanson27@hotmail.com. I wish you all the best - and thank you so much for having read my story.



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