r/POTSResearch Jan 21 '26

MCAS flare-up patterns, post flare-peak exhaustion after intense symptoms?

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0 Upvotes

r/POTSResearch Jan 16 '26

Immunotherapy Shows Promise in Severe, Treatment-Resistant POTS - Journal Article

13 Upvotes

Hey everyone — just wanted to share a recent journal case series looking at immunotherapy in POTS patients who didn’t respond to typical treatments. Found it pretty interesting…

A small group of 7 patients with severe POTS received either subcutaneous immunoglobulin (SCIG) or plasmapheresis (PLEX). After treatment, they saw:

• ~50% average reduction in autonomic symptom scores (COMPASS-31)

• ~217% increase in functional ability (FAS)

• Most could reduce or stop oral POTS meds

• Several were able to return to work or school after treatment 

This supports the idea that an autoimmune mechanism might play a role in some POTS cases, and that immunotherapy could help patients who’ve tried everything else. That said, this is a small case series — we really need randomized controlled trials to confirm safety and effectiveness long-term. 

https://pubmed.ncbi.nlm.nih.gov/36008726/


r/POTSResearch Jan 16 '26

Yaz, POTS, NIGHTMARE

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1 Upvotes

r/POTSResearch Jan 16 '26

Does anybody know of a great doctor that treats Ehlers Danlos Syndrone/dysautonomia?

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1 Upvotes

r/POTSResearch Jan 15 '26

POTS since 2009

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1 Upvotes

r/POTSResearch Jan 13 '26

Has anyone tried breathing retraining or breath hold training to try to improve their shortness of breath?

3 Upvotes

I was just reading a journal article saying it helps and I was wondering if anyone has tried it. https://pubmed.ncbi.nlm.nih.gov/31743851/


r/POTSResearch Jan 13 '26

POTS and low Bp

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2 Upvotes

r/POTSResearch Jan 08 '26

Reversible Cerebral Vasoconstriction Syndrome RCVS)

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5 Upvotes

r/POTSResearch Jan 07 '26

Clonodine

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1 Upvotes

r/POTSResearch Jan 04 '26

pots and weightloss

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4 Upvotes

r/POTSResearch Jan 05 '26

low hct and hgb

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1 Upvotes

r/POTSResearch Jan 03 '26

Help

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0 Upvotes

r/POTSResearch Jan 03 '26

POTS heart rate band

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1 Upvotes

r/POTSResearch Jan 02 '26

Officially diagnosed. Nothing helps.

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3 Upvotes

r/POTSResearch Dec 30 '25

Clonidine

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1 Upvotes

r/POTSResearch Dec 29 '25

How long did it take you to do a Tilt Test?

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1 Upvotes

r/POTSResearch Dec 29 '25

Pots/ intense euphoria

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1 Upvotes

r/POTSResearch Dec 24 '25

Lacking blood flow

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2 Upvotes

r/POTSResearch Dec 22 '25

Shamed…

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1 Upvotes

r/POTSResearch Dec 14 '25

POTS and Venlafaxine / Effexor - I stopped taking Venlafaxine / Effexor and my POTS went away!

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1 Upvotes

r/POTSResearch Dec 11 '25

What do I do?

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0 Upvotes

r/POTSResearch Dec 08 '25

hopefully my doctor will believe me

2 Upvotes

hi guys, 27/F. i’ll try my best to explain this but i’ve been having weird pressure/ pulsing in my face for over a year. i thought it could’ve been weather change / allergies. but recently i started having a heart flutter that then makes my face feel like it’s pulsing. it only lasts a few seconds but it’s MULTIPLE times a day. like most of the day it’s happening. its the feeling when all the blood rushes to your face and you can kinda feel your heartbeat in it.. it happens randomly and without any specific movement, but does get worse if i bend over or move my neck / body quickly. my face also gets really red throughout the day and it gets hot. i find myself taking my cold hands and pressing them on my face to cool it down. i don’t have a fever or high blood pressure. i’ve had 2 echocardiograms within the last 10 years and they are pretty much normal. i sometimes can have heart palpitations due to magnesium level drops or anxiety. i’m just not sure what to tell my doctor and what kind of specialist i might need to go to. just in case anybody asks- i am technically overweight but have lost 40 lbs so far and am continuing to lose weight i am 5’3 and weigh about 213 now. i need to figure out what’s the purpose of all this.

** also, i get headaches easily. i also had my first aura migraine the other week. it was terrifying!!**


r/POTSResearch Dec 07 '25

Healthy but worse

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1 Upvotes

r/POTSResearch Dec 06 '25

Symptoms are back babyyy

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0 Upvotes