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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. 

My Personal POTS Story


By Rita
August 2010


I am a 31-year-old female and became sick with Postural Orthostatic Tachycardia Syndrome at the age of 25. It took me 9 months of suffering before I finally found a doctor who was able to not only BELIEVE that I was sick, but actually know what was wrong and treat me!

I have always been a runner. I have a PR of 19:20 for the 5k and 2:30 for the 800 meters. Anyway, I was 25 years old and running a speed workout on a hot Saturday morning in June. My 25th birthday was just weeks away, and I was running some 400-meter intervals. I noticed that during my cool-down jog, I felt sooo dizzy, and I attributed it to the heat and probably dehydration. I have always been on the underweight side, so I thought maybe I was not eating enough. I was working full-time at a hospital as a dietetic tech, which requires hours of 6 am-2 pm and lots of walking around, and I was taking grad classes at night in addition to my running and racing. I thought maybe I was burning the candle at both ends because I felt super drowsy in an unusual way, like such an overwhelming feeling of constantly sore and dead muscles and a feeling like my body is  "forcing me" to just lie there and fall asleep.

I was so dizzy 24/7. Even lying down, I was dizzy. Working became impossible as I had to drive far very early in the morning to get to work and would feel so dizzy in the car that I’d have to pull over several times due to nearly passing out in the car, both on the way to and back from work.  I was having so much dizziness that I had to hold on to the walls of the hospital where I worked and began making lots of errors at work due to the overwhelming fatigue, drowsiness, dizziness, and brain fog.

I was also feeling a huge jump in heart rate upon standing, super dizzy and short of breath upon standing also. I began taking my heart rate both lying down and then standing and noticed a resting heart rate of 50 beats per minute, and standing it went to 120!

Just to cook, I had to sit down. My eyes looked sunken into my head, and I was losing weight. Eating became tough due to feeling so sick, and even sitting upright in a chair, I felt so dizzy. For 9 months, I went from doctor to doctor and was told I had depression and anxiety, that this was all in my head, and that I was healthy. I was constantly going to my ER in the hospital where I worked, and my boss was constantly threatening to fire me. I knew I was super sick, and nobody believed me. My boss didn't believe me and neither did the doctors. Only my mom believed me because she saw me every day and saw the drastic change in my health and my inability to live a normal life. She saw my rapid decline. I had every medical test under the sun: blood work, CAT scans of my brain, MRIs, fluid IVs, you name it. Nothing showed anything. I thought maybe I had some undetected brain cancer that was causing me to be so dizzy.

I did many Internet searches every evening, and then I found the POTS Place website!  All of my symptoms matched the criteria for dysautonomia! This site was where I found a hospital with a doctor in my area! It was the best thing. I got a tilt table test, and it was confirmed that I, indeed, had POTS. Finally, I was put on Florinef, Celexa, potassium, and midodrine and was finally able to get rid of the dizziness and get my life back.

For 6 years now, I have been living with this illness, and I know it is going to be permanent.  I have been working full-time for the past 3 years, but I want to go on disability because on the days I work, I am bedridden as soon as I come home, and the days I don't work, I am in bed all day just to recover from the 5 days I did work. The work situation is so fatiguing, stressful, and overwhelming for me and is depleting my quality of my life even further. Although I am much better than I was without the medications, I still do not have a normal quality of life and still have a high degree of orthostatic intolerance and a high need to sleep and lie down more than the average person.

I am lucky that I did improve as much as I did, but I know that POTS will always be a battle for me to fight. I get dehydrated very easily and constantly need to be diligent with the fluids. I cancel on things a lot, and I feel bad, but I am too tired and sick-feeling to attend 98% of the plans I make with people. This illness ruins life. I know it could be worse and has been worse, but I know I will NEVER enjoy the health I used to have. However, I guess everyone has challenges and problems, and this is mine.

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