Stark

@TigerLily I have this and it it due to MCAS. Scents (especially chemical) are a huge mast cell trigger

This is basically my current situation. Did you manage to get off of TPN? You've convinced me that I really need to start doing SOME kind of limited exercise

This sounds like classic MCAS to me. Tryptase is usually not elevated in MCAS fyi. It is very difficult to diagnose via blood tests since only a few of the mediators released by the mast cells can be tested for.

Interesting, I will check it out. Does it offer any advice on what do to?

I found this theory very interesting. It certainly explains why many of us have so many comorbitities and why we often develop our conditions after viral infection or other traumatic events. https://www.healthrising.org/blog/2018/08/09/rccx-chronic-fatigue-fibromyalgia-eds-pots/

Tylenol? Have you had your intercranial pressure checked?

Do you take any benzos? They have caused terrible reflux for me in the past

Researchers at the University of Oklahoma have published a study on the first animal model of POTS, an essential step in confirming whether or not a condition is an autoimmune disease. Additionally, they report that antibodies similar to those found in POTS patients cause tachycardia in rabbits. Perhaps even more importantly, they have identified a potential new drug that inhibits the effect of the antibodies. This study demonstrates for the first time a role of adrenergic autoimmunity in the pathophysiology of POTS in two related animal models. The study also demonstrates that the effects of adrenergic autoantibodies are largely reversed using a compound that blocks the autoantibodies, which was developed by the University of Oklahoma researchers. The JAHA research article: www.ahajournals.org/doi/10.1161/JAHA.119.013006 The JAHA editorial that emphasizes the importance of the findings: www.ahajournals.org/doi/10.1161/JAHA.119.014084

My startle reflex is terrible. I think I'm going to start meditating to see if I can get it more under control

Double post

If you'd like to pm me I can send you a couple of Mast cell aware doctors in the Twin Cities area

My understanding is that tryptase is typically not elevated in mcas, mkonly mastocytosis. There is quite a bit of disagreement within the medical community about how to correctly diagnose it FYI Mayo treats mastocytosis but not mcas, so be aware of that

You could just give yourself a buzz cut with a pair of clippers if you don't care too much about your hair style at the moment

Only every time I eat! It's especially bad if I eat a lot (especially a lot of carbs), which I believe is probably postprandial hypotension. I also get it sometimes just from just a small amount of food, which I think is probably MCAS related.

I sort of fall into this camp. My resting heart rate is in the 40s (sometime upper 30s when lying down for extended periods). It rises to the 80s or 90s when I stand, which is more than enough for a POTS diagnosis, but isn't technically a considered tachycardia since it is usually sub 100 bpm