- Dysautonomia / POTS
- Interviews
Cass's interview
How did all start?
In October of 2018, I came down with a flulike virus over my college's fall break. At first I thought it was just a particularly bad flu; I fainted in the airport on the way home, and could barely walk, but I attributed it all to weakness from the virus. As the days turned into weeks, I slowly started to realize something was really wrong. I wasn't getting better, long past the point where I should have recovered. Thus began my hellish journey through doctor after doctor who all told me again and again that I was just stressed... I couldn't walk. I couldn't sit up for long. I fainted five or six times a day. I was dizzy, exhausted, weak. I could feel my heart beating faster than it had ever beat before every time I sat up. I had to drop out of college and come home in a wheelchair. Finally I found a doctor who listened and believed me, and after a lot of tests, finally got diagnosed with Dysautonomia/POTS and Mitral Valve Prolapse.
Do you already have a diagnosis? How long did it take you to get it?
I've been diagnosed with dysautonomia and mitral valve prolapse. It took about five months to get diagnosed, which I know isn't very long comparatively, but it was a long time to live with debilitating symptoms and no explanation. I also believe I have myalgic encephalomyelities/chronic fatigue syndrome, which is frequently comorbid with dysautonomia, but I'm still in the process of getting that diagnosed.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Cardiology, psychiatry, and neurology. Neurology has been the most helpful.
What has been the most useful thing for you so far?
Medication! I take midodrine and pindolol and it's made a world of difference. My symptoms are still fairly severe, though, so I'm in the process of getting IV fluids to supplement.
How has your social and family environment reacted? Have your social or family relationships changed?
My family and friends have been very supportive, but my relationships have changed some. I'm not able to be as active as I used to be, and I'm forced to rely more heavily on my family and girlfriend now that I have a disabling condition.
What things have you stopped doing?
I used to be really into boxing, and now I can't even stand up long enough for a boxing class, much less exert myself that hard. There's lots of other things I can't do anymore, but that's the one I miss the most.
