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Everything posted by POTSius

  1. I think there is a dr. at the mayo clinic in Arizona who does MCAS My mast cell Dr. told me that these tests are typically extremely sensitive to mishandling as the things being measured are fairly unstable Did you chill your urine while you took it to the testing facility? My dr. said this is important Plus you can never be sure the people handling your blood/urine did not leave it at the reception desk at the lab too long, etc This is one of the reasons MCAS testing is so difficult I was diagnosed based on a few tests, one of which was the plasma histamine level My dr. also did not seem to think tryptase was a good way to diagnose MCAS But as Stark said, there is a lot of disagreement on testing for diagnosing MCAS
  2. I typically have a flare up each fall which I attribute to fall allergies I have been dxed with hyper POTS and MCAS so I think it makes sense that fall allergies could be causing the problems. Maybe you have MCAS? It is very hard to diagnose (or rule out for that matter) I find nasalcrom a good nasal spray for congestion, it is a mast cell stabilizer you spray in your nose, over the counter KaciCrochets: Interestingly, one of the symptoms I Tend to get in my fall flare ups is shaking, which for some reason using an electric heat pad (like those used for muscle pain) and applying it to my core helps
  3. Thanks for sharing what a great website these pages are also interesting http://endmecfs.mgh.harvard.edu/skeletalmuscle/ http://endmecfs.mgh.harvard.edu/braininflammation/
  4. For years one of my major symptoms has been headaches triggered by mental exertion I want to share something I have found that helps tremendously: self massage If anyone is interested in trying this, I would advise they try massaging various spots in the regions I describe below and see if it helps I find that I can find sore spots in these regions and that, after a few days of massaging these spots, they stop being sore and my headaches improve! If anyone tries this or has tried something similar, I would love your thoughts Regions: See the "Temporal" muscle in this picture, https://en.wikipedia.org/wiki/Temporal_muscle#/media/File:Gray382.png I find the best spots are the part of the temporal muscle as close to the front of your face as possible (directly posterior to the eye area) Another part you can find like this. Stick your fingers on the top of your ears and then move a little bit toward your eyes and there is an often sore spot (for me at least) Additionally, I find that sometimes massaging only helps from a certain angle (i.e. an up or down motion vs a side to side motion)
  5. I have experienced a similar symptom regarding that unpleasant feeling in the stomach in response to excitement or stress What has helped me tremendously is treating my acid reflux (which I think was irritating my upper GI tract and thus making it very sensitive and susceptible to such a feeling) Sodium bicarbonate (i.e. baking soda) and pepcid have worked for me in that regard
  6. For me, mixing salt in with porridge helps I think putting it in any liquidy food should probably work similarly as the salt will mix in more evenly Putting it on solid foods can definitely make it hard to get down
  7. For me (with hyperadrenergic POTS), clonidine is quite helpful however, the pill form caused issues (I would feel great and then a few hours later crash). The patch has worked much better in terms of a stable effect. For the first few weeks on it, my orthostatic intolerance was worse, but then I adjusted and my orthostatic intolerance returned to its normal (bad) state. I should note that the clonidine does not help me with my orthostatic symptoms, but instead many of the other symptoms I get as a part of my hyperadrenergic POTS. It also helps with anxiety. The only issue in my mind is you can't just go off it as there is a withdrawal There are also medicines like methyl dopa and guanfacine which work similarly I think
  8. When I am sick with a cold/flu I have noticed a considerable increase in my resting heart rate, as much as 20-30bpm I think it is mediated by withdrawal of the PNS (as opposed to via the SNS), as last time I was sick, and on a beta blocker, I still had the increased heart rate (If I remember right)
  9. Thanks for the responses Anyone find anything that helps? The only thing that seems to help for me is ibuprofen
  10. I was wondering if anyone else experiences delayed symptoms (see below) from being upright I find that even sitting up normally for even an hour is enough to trigger symptoms starting a few hours later Symptoms like achiness (muscles and eyes), malaise, fatigue As a typical example, I might sit in the am, get the symptoms in the afternoon and they will last most of the rest of the day If an of you experience this too, have you found anything helpful for it?
  11. I have seen that others also suffer from uncontrollable muscle shaking/shivering I just wanted to share that I found something that works very well for me I find that an electric heating pad pressed against my chest works very well in stopping the shaking This is even though I don't typically feel cold when this is happening So if anyone else is suffering from this, this may be worth a try! My thighs are primarily what shake for me, so it is a bit funny that heat on the chest works, but I think it works by heating your core
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