Shungita Posted September 30, 2020 Report Share Posted September 30, 2020 Hello, I’m new. I’m 6 months post COVID and a long hauler (caught at work in NHS with no PPE). I developed what was possibly PoTs at 20 followed a tonsillectomy (30 yrs ago). It was a rocky road but in the last 5 years I had a reasonably normal life. Unfortunately post COVID I’m back there. Fainting, tachycardia/bradycardia, high/low blood pressure/ chronic fatigue/muscle pain/ nausea. One thing that has been consistent throughout when I’m feeling dreadful is that my pupils dilate and constrict without any light stimulus. Like they’re on their own little dance floor. Any dr I’ve ever mentioned it to has dismissed me and my only diagnosis in 30 years has been anxiety (I’m not!) and attention seeking (I’m not). thanks for reading, any advice very welcome!!! Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 30, 2020 Report Share Posted September 30, 2020 Hello @Shungita - welcome to the forum!!! I am sorry you are having such a bad time. As you maybe already know - viral infections are frequently the cause for bad flare-ups. The only thing that helps me through these Flares sre ample rest, IV fluids and not pushing myself. Sometimes I need to just lie in a dark room and let it blow over, avoiding all stimulation. Then I have to slowly restart exercise, I use a rowing machine and - once somewhat stabilized and able to get out of bed - I start at a few rows a day and increase to tolerance. Pupil dilation is controlled by the ANS - here is an exert from the following article: www.medicalnewstoday.com/articles/76785.php Dysautonomia refers to a wide range of conditions that affect the autonomic nervous system. It is also involved in pupil dilation, sexual arousal, and excretion. Symptoms of dysautonomia usually appear as problems with these particular systems. Dysautonomia affects an estimated 70 million people worldwide. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted September 30, 2020 Report Share Posted September 30, 2020 This is actually something I discovered by accident. I was having weird vision issues I didn't know how to explain and then after one trip to the ophthalmologist, where he dilated my eyes, I realized this was an exaggerated version of what I'd been feeling for quite a while. Neurologist confirmed that the random dilations were part of the autonomic nervous system trickery. Quote Link to comment Share on other sites More sharing options...
Sushi Posted September 30, 2020 Report Share Posted September 30, 2020 12 hours ago, Shungita said: Any dr I’ve ever mentioned it to has dismissed me and my only diagnosis in 30 years has been anxiety (I’m not!) and attention seeking (I’m not). My autonomic specialist had me track this and I definitely also have this problem. He regarded it as a marker for Dysautonomia. Quote Link to comment Share on other sites More sharing options...
Shungita Posted September 30, 2020 Author Report Share Posted September 30, 2020 47 minutes ago, Sushi said: My autonomic specialist had me track this and I definitely also have this problem. He regarded it as a marker for Dysautonomia. Wow! If this could be the answer after 30 years it would feel amazing. Unfortunately the PoTs specialist in my area dismissed me after a 2 minute conversation and a 24 hour cardiac tape. My colleague is a cardiac sister so she has re-referred me back to him to challenge this!! thanks for taking the time to reply. Quote Link to comment Share on other sites More sharing options...
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