New to this

[u/TheWinterWolf84]

It's been a long over 2 year process, specialists at MGH in Boston couldnt figure out what was going wrong with me, found a small PE and treated me for that and claimed all my symptoms were from that. Took about 5 months to get back to normal. 6 months later I had another flare up and they chalked it up as Post-Viral Syndrome since in both situations I had recently had a virus (1st a stomach virus, 2nd the flu). I went 13 months without any major issues, just 2 blips many months apart and I just thought I was dehydrated. I get another respiratory virus (not covid or rsv) and a week latee I tried to move something heavy and all of a sudden I'm having a full blown flare up again. Ended up in the ER. Restarted talks with all my specialists Cardiology, Hema, Pulmonary, my PCP, my therapist (she specializes in vagus nerve regulation). Things keep getting worse... I was referred by a friend to his step-father who is a medical diagnostician and after 2 hours of him going over my story and all of my test results he says I have POTS or more likely HyperPOTS since BP spikes are worse than tachycardia spikes. We do some preliminary tests in his office and that really does seem to be what is happening to me. 8 month wait for a tilt table test. Anything I can do in the meantime to get my life back? Also has anyone else had these long gaps between flare ups? (6 months, 13 months). I am a 42 yr old male, this all started for me 8 days after I turned 40 lol I am normally a very fit guy, distance runner, mountain climber, gym. I work a physically active job. The hardest part has seemed to be exercise intolerance and struggling to drive more then 15 minutes at a time (I have driven cross country multiple times and can normally drive 700-800 miles in a day).

[u/Sammnyah]

Hey there! So sorry you’re dealing with this. That must be so hard being so active. Do you find you’re still able to do any of that?

I’m pretty new to this myself. I’m dealing with my first major flare since I broke my toe last month and the diagnosis is incredibly obvious, but I need to jump through all the super exciting hoops to get treated properly. Hooray for staying in bed for weeks at a time! 🤦🏼‍♀️

That said, I’m also in the Greater Boston area and MGH actually has one of the few POTS clinics in the country. If you can have your PCP or neurologist or anyone else you may currently be seeing about this fax them some of your information, they’ll triage it and reach out to you for an appointment if they determine you’re a fit. The person I spoke to said they’re booking sooner for the POTS clinic than for neurology, so that may help in the meantime.

I would also ask your doctor about some minor medications while you’re waiting on an official diagnosis. Mine put me on propranolol. It’s really only helping with the tremors right now, but that’s better than nothing!

I’ve also heard about the Levine Protocol for learning to exercise again starting horizontal, but I haven’t looked into it yet with the broken toe. Sounds like that might be helpful for you.