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Everything posted by Stark

  1. 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
  2. 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.
  3. Interesting, I will check it out. Does it offer any advice on what do to?
  4. 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/
  5. Tylenol? Have you had your intercranial pressure checked?
  6. Do you take any benzos? They have caused terrible reflux for me in the past
  7. 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
  8. My startle reflex is terrible. I think I'm going to start meditating to see if I can get it more under control
  9. If you'd like to pm me I can send you a couple of Mast cell aware doctors in the Twin Cities area
  10. 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
  11. 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
  12. 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.
  13. 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
  14. I think it depends. I usually feel like my immune system is overactive. I have not had so much as a cold since this all started for me last year
  15. Yes, I get this all the time. It's part of my MCAS. See if antihistamines are of any help
  16. You could work on strengthening your parasympathetic nervous system to balance things out. My understanding is that this can be done through yoga, meditation, deep breathing. How did you eliminate your other symptoms?
  17. I have had this for some weeks now. My heart rate and blood pressure are pretty fine, but my arms and legs feel extremely heavy most of the time. Makes every thing extremely difficult : /
  18. I have heard problems with the vagal nerve can cause swallowing issues
  19. Sounds like MCAS. My POTS symptoms always get worse when I have an MCAS reaction
  20. No, I was extremely athletic (gym 6 times per week) before the onset of symptoms. My resting heart rate was around 60. I have now not done any exercise in months and my resting heart rate is now 15 points lower (although at the start of my condition it was much higher at first, probably around 70). Weird stuff
  21. I am not on anything. No change in eating habits either. I'm pretty sure it's just the progression of this condition
  22. Interestingly, this wikipedia article also references that both high intercranial pressure and systematically administered norepinephrine can cause reflex bradycardia. I know many of us have high intercranial pressure and some types of POTS can have high norepinephrine levels. I wonder if there could be a connection there https://en.wikipedia.org/wiki/Reflex_bradycardia
  23. Does anyone have any theories for why bradycardia occurs in POTS? When I came down with POTS last fall, my resting heart rate was consistently in the 70s (and of course increasing when I stood up). However, it has slowly decreased over the past 7 months until it is now in the mid 40s. Meanwhile, I have only been getting MORE deconditioned, so it's not a case of me getting into better shape. I'll note that I don't experience any symptoms from a low heart rate. I've seen others have this issue as well, does anyone have any theories? I'm thinking it might have something to do with acetylcholine or the receptors?
  24. Has anyone tried a supplement to support the vagus nerve? I have seen one formulated by Dr. Driscoll that has decent reviews, but am skeptical. Is there evidence to support vagus nerve involvement in our condition?
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