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  1. I used to use one and yes it did help. Now I just use compression knee socks as the binder was a pain to wear even though it was somewhat helpful.
  2. My pain comes from EDS. A good PT can get me out of it, but it doesn’t last. The PT’s home exercises to improve muscle tone (to make up for the stretchy ligaments) also helps a bit. I am looking into the Cusack protocol for EDS as many report that it helps them.
  3. I believe that most who get these symptoms lower their dose and some lower the frequency.
  4. Yes, calcium channelopathy is the one I know of, but I don’t know much.
  5. My EP recommended it...along with an antiarrythmic drug--so, probably not a stand-alone treatment except for mild conditions. I do feel it helps though.
  6. I use it to prevent arrhythmias. Here is a good article on it: Elimination of cardiac arrhythmias using oral taurine https://pubmed.ncbi.nlm.nih.gov/16797868/
  7. I have found that I’ll get very quick relief from a tiny dose of Indica when I am sinking into one of those episodes of feeling that I might just die. Within 15 minutes to a half an hour all those awful symptoms are relieved. I have also used tiny doses for sleep but get sensitized to it very quickly so can only use it occasionally. I use state-regulated chocolate bars that make it easy to dose accurately.
  8. About half of POTS patients seem to be responding to Mestinon and there is heart-related research to show why. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860548/ He is working on a larger study. The primary researcher is a pulmonary and critical care doctor at Brigham and women’s in Boston and teaches at Harvard.
  9. Will you be near enough to go to the UAB specialist if you find his report to be comprehensive?
  10. Maybe you could call the department at UAB and ask if they will be sending a report and interpretation of your test to your local neurologist? The interpretation and analysis is almost the most important part of the test in my experience.
  11. When I asked about videos from UAB I hadn’t seen this thread. I poked around and see that UAB now has a clinician trained in autonomic dysfunction—yay! Sounds great. That is a wonderful addition to their clinical services. Keep us posted.
  12. Do you have a link to this YouTube? What department at UAB is working with autonomic dysfunction? Last I heard, they didn’t have anyone after their principal clinician retired and died. I have had severe constipation since early childhood. Right now I need about 1200 mg of magnesium citrate to be regular.
  13. It is much more than ATP, though it would affect one’s ability to produce ATP. The hypothesis of a metabolic trap has a genetic underpinning—damaging mutations that create a “trap” in our metabolic functioning. I don’t have the science background to explain but am just noting that this is a possibility that some researchers are working with.
  14. I also have had constipation all my life. My primary way of preventing it is quite high doses of magnesium each night. But the amount I need varies (probably because of what I have eaten that day) so sometimes I get caught.
  15. And then there is the theory of one or more metabolic “traps” that cause dysfunction in basic metabolic processes like production of energy. This is being actively researched but know answers yet.
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