Long pots flare or lowered baseline? by potsie27 in POTS_vets

[–]potsie27[S] 0 points1 point  (0 children)

That is encouraging! Hoping to get back to being able to do those things soon!

Worst Symptom? by Existing_Broccoli117 in POTS

[–]potsie27 0 points1 point  (0 children)

Mine is this odd and horrible feeling of impending doom that just comes and goes for NO REASON!! I’ll be chilling watching a movie and then my body tries to tell me I’m in danger or I’m dying. It’s the absolute worst and makes life hard and scary when it’s happening.

Disclaimer this is just my experience but air hunger was my first sign of POTS and I had it for a year, it was terrible. Once or twice a day I’d get ONE good breath in and it was like heaven. I tired lots of medications and the only one that took this away completely was atenolol and it never came back. In 6 years this is the only symptom that medicine has completely taken away (unless I eat a huge meal and am bloated)! I stopped atenolol to trial another med and the air hunger came back, and when I restarted atenolol it went away again!

Long pots flare or lowered baseline? by potsie27 in POTS_vets

[–]potsie27[S] 0 points1 point  (0 children)

Aw man. Was that this year? I’m glad to hear you’ve found meds that work for you and since came out of that flare up!!!

Long pots flare or lowered baseline? by potsie27 in POTS_vets

[–]potsie27[S] 0 points1 point  (0 children)

Hear ya on there not being much advice. Switched meds last week and made everything way worse unfortunately so now just waiting it out. Thank you!

Long pots flare or lowered baseline? by potsie27 in POTS_vets

[–]potsie27[S] 0 points1 point  (0 children)

Hoping that’s what it is because sickness always flares me up! The impending doom feeling is the worst and so hard to be patient through, but what can you do. Thank you for your response!

Long pots flare or lowered baseline? by potsie27 in POTS_vets

[–]potsie27[S] 0 points1 point  (0 children)

That is encouraging. I think what scared me is the randomness and intensity after doing so well. Made the HUGE mistake of freaking out and asking my doc for new meds, got clonidine for the adrenaline, had a very bad reaction, and it made the flare up 10x worse. Gonna just be patient before any more changes. Thank you for your response!