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Does this sound like POTS? What can I do?


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Hello all, 

30 year old male. Very active (weight lifting and endurance sports) and healthy otherwise. About a year ago I came down with a cold of some sort -- no big deal -- but it developed into a month long struggle with dizziness (not spinning, but off-balance and just "off", I guess), fatigue (can sleep pretty much all day if I could), losing vision and feeling like I'm going to pass out upon standing (about 3-5 seconds after standing), inability to complete routine workouts (if I try, I am VERY tired for the rest of the day), and generally feeling a bit "slow" and unable to concentrate and articulate. After about a month of bed rest, frustration, seeing multiple doctors and brain scans... it went away. 

About six months later, it happened again. A cold/virus bug followed by the same symptoms. More doctors. Still no idea. Although they were able to rule out many life-threatening things, which I appreciate. After a month it went away.

Now it's happening again. A very minor cold kicked it off yet again. The idea of another month laying around...well, I don't think I need to explain it to any of you. The stress it places on my own life and inability to do the things I love, and the tension it creates with people around me who aren't really able to understand what I'm feeling (I don't even understand, so I don't blame them.) Anyway, I'd never heard of POTS until yesterday. So I put on a heart rate strap. Throughout the day, my heart rate would go from the 40s to 100-120 when standing. It takes about 3 seconds after standing for things to start blacking out and needing to bend over and put my hands on my knees for a minute. 

The depression and overall hopelessness this is causing is an entirely different subject. 

Anyway, I've seen a lot of doctors. They've all been great and have much harder jobs than most of us realize, but I'd be lying if I said I wasn't a bit frustrated at this point. With COVID cases quickly rising in my state, I'm not sure when I'll be able to get in for an appointment or do any of this "tilt table" stuff. 

Does this sound like it could be POTS or related in some way? Has anyone else experienced this only after catching a minor illness? Can I do ANYTHING other than maybe try drinking a lot of water and eating salt? Will this ever end? Am I going to have to accept that I'll be worthless for a month anytime I catch a bug?

I am quite ********* sick of it. And so here I am on an internet forum, desperate for answers.

Thank you for your time.

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That does sound like POTS with the heart rate increase on standing, I think it would be a good idea to make another appointment with the doctor and bring up POTS because it's quite rare and a lot of them haven't heard of it. I've been bouncing around doctors for 3 years and only recently discovered POTS, mentioned it to a doctor and now I'm on the waiting list for a cardiologist! Unfortunately an official diagnosis won't give you a cure but knowing what's wrong helps so much, I'm not even officially diagnosed yet but everything fits and I already feel better knowing what it most likely is. Unfortunately I've never had it after an illness so I can't say anything on that I'm afraid but I think it's worth seeing a doctor again, even if it means being on a long waiting list. Until then I can only say be extra careful to not catch anything at all so you don't get taken out for a month. Hope I could help ☺️

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Sounds like an autoimmune issue. I got a flu 4-5 years ago bad and after that I had low testosterone and thyroid levels. Preceding the pots I had a poorly treated h pylori infection which also cause some left side 4th cranial nerve palsy that I have intermittent esotropia or double vision now. I had been doing better, but a student worker got some sort of stomach bug and now I am getting some symptoms again. Worse double vision, stomach always upset and fatigue. Doctors either can't explain it and shrug their shoulders or think you're nuts. When I come up with suggestions, it's like I crossed some line. I just live with it the best I can. 

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Many, many of us develop full blown dysautonomia after a viral illness and subsequently flare after another one. Request that your Dr does a full set of orthostatic vitals, supine 10 minutes check BP/HR, check again on immediate standing, again after 2, 5, 10 minutes while standing completely still. You can do this at home and document your vitals and symptoms. Just stop if you feel faint. The majority of Drs don’t know about dysautonomia so show up with information from the main page on this site. Most of us see specialists in neurology and/or electrophysiology (cardiology). Request a referral to a *knowledgeable* specialist. There is a list of Drs also on the main page here and on Dysautonomia International’s website. In the mean time try fluid loading, oral rehydration salts with sodium and dextrose are good, and compression leggings. Keep exercising but limit it and don’t overdo it. Pacing is vital. You can search through this forum for additional information. Good luck. 

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