By Karen Hope
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: firstname.lastname@example.org. I wish you all the best - and thank you so much for having read my story.