POTS patients- vaccine or no vaccine?
Hello, I have been advised that those of us with POTS can have autoimmune reactions to the COVID vaccines. Needless to say, after several years striking a tenuous health balance, I'm not anxious to an develop autoimmune condition / reaction. Does anyone with POTS who had either COVID or one of the vaccines care to comment about their experiences? Thank you in advance!
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I got the two Covid Vaccines then the first booster. I then came down with GI issues and POTS. I will not be getting any more boosters.
What were the instructions you received/the changes you were advised to make?
Thank you, peterson!
What a journey, ilean! No apologies needed for your long post.
FWIW (For What It's Worth), I had major-post Pfizer problems. Eighteen months of GI problems, got down to an alarming 115 pounds. Self-diagnosed with A-fib, initially noticeable when at rest, reclining with pillows behind my head.
Read an article highlighting a compilation of VAERS data where it was determined there has been a "worldwide spike in food hypersensitivity." Sorry I can't provide the link.
Since my severe GI issue, at its worst, was up to nine episodes of diarrhea per day, I must speculate that the loss of electrolytes was the root cause of my arrhythmia, foot and leg cramps.
I have succeeded in getting back to GI almost normal with a low histamine diet, the addition of DAO enzyme (which digests histamines in food) and continuing my antihistamines (H1 Blocker Claritin/Loratadine and H2 Blocker Tagamet/Cimetidine). I was put on those antihistamines decades ago due to strictly cutaneous mastocytosis which escalated to Mast Cell Activation Syndrome-GI/D after the Pfizer double jab. My other success? The last time I weighed myself, I was up to 119. Goal? 123 - 127.
My A-fib? Better but still noticeable. At one point I could actually feel blood clots so added 1/2 of an adult aspirin to my daily regimen.
We're climbing the same mountain--from different sides. You hoped for some ideas/thoughts. I do know of a case on Inspire.com (another medical forum website) that is similar to yours. You may want to visit/join and seek out the groups related to masto. Worth considering.
Hi, ilean! I did not get the booster and, like you, will be avoiding any more CoVid vaccines. To the best of my knowledge, I never succumbed to the Wu Flu. Never got tested. I assume I never had CoVid because I didn't have any symptoms and my husband, who did have to get tested, tested negative--and we do kiss.
Frenchie333 - thanks so much for your post!! So glad to hear about positive results. I will research the DAO enzyme. I did start to take cimetidine a few months ago but then stopped:(. I just added it to my pill box again this morning. Question - have you ever heard of Metoclopramide? I had an ER Dr prescribe it for 5 days and seem d to help. My GI then prescribed it for 30 days. I do think it is helping but you are not to use it long term because of potential long term side effects. My GI asked if I would be comfortable taking Domperidone. It is a similar drug out of Canada. But when I look online it says for temporary use - like 5 days!! (May be spelled Donperidome). I am hesitant to use it long term but I need relief!! So glad you have gained weight!!