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

Not Alone


By Kathleen McCullough
March 2005

When I began college, I was very healthy. At the middle of the first semester of my freshman year, I started to feel odd. I was tired all the time, felt sick, and had a low fever. I went to the student health center, and without doing any tests, they told me I had a sinus infection. I went on 6 rounds of antibiotics which took several months. I had a different doctor every time, and my symptoms seemed mysterious and random to them. I was light headed, peed constantly,  was tired, had nausea, would wake in the middle of the night gasping for breath, had a fever but was always cold, and would pass out sometimes when I stood up. Eventually I went to the ER. I had passed out twice in the past few days, and my hair had started falling out. Unlike most college freshman, I had actually lost weight. The doctor told me I had a hormonal problem and on the way home I cried. I had to stop to sit down because my legs felt heavy and I was lightheaded. I wondered if I was crazy. My roommate had started to call me a hypochondriac. Was I?

One night I woke up gasping for breath and horribly nauseated.  When I got up to go to the bathroom, I blacked out. I found myself on our carpet, sobbing.  I knew I had to do something.  My system was a mess from all the antibiotics, and my parents were concerned.  My Dad was going to the Mayo clinic for his heart problems over Christmas break, and they took me with them.

The first doctor I met with was my Dad's heart doctor. I told him my symptoms, and he picked up on something. It turns out his daughter has POTS. He took my pulse and blood pressure seated and then told me to stand up. I didn't know why, but he took it again when I stood. He then told me I would need to do a tilt table test. He also told me my blood tests were back and I had Mono. All this time I was told I had a sinus infection, I had Mono. It had affected my brain, I guess, and now I might have POTS.

The tilt table was OK at first, and then they tilted me all the way up. I felt like I was going to die. It was the worst I have ever felt in my life. My blood pressure went to 70/40, and I said please let me down.  I really felt moments from death. When my blood pressure was that low, my pulse was sky high. My diagnosis was made. I was put on Zoloft, which had helped some patients, and put on a high salt diet.  Some of my friends still didn't believe that I had a problem because I was mostly functional.

It's been four years since my diagnosis, and some of the symptoms have amazed me. I have an absolutely horrible memory, I have to write everything down, and I often lose my train of thought in mid-sentence. I'll remind myself to tell someone a story, and then it's gone. I make lists, but forget I made them. I still urinate way too often, and have trouble sleeping. My hands and feet are always freezing while the rest of me is always warm, and when I wake up I'm covered in sweat and my hands are asleep. My heartbeat is sometimes irregular, and I have IBS and trouble swallowing. I am unable to tolerate any antibiotics, I think because of the many I was prescribed on my way to a diagnosis.

I wondered a lot of the time if there was something wrong with me, if I should just hide what I was feeling because they didn't seem to go with any illness I knew, but I'm glad I didn’t hide it. Now I've found a place where I can cope with my illness, and know I'm not alone.

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