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Everything posted by Sushi

  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.
  16. I also use a cooling vest every summer. There are several types and each has it advantages and disadvantages but all help one cope with high heat.
  17. And then there is neurally mediated hypotension (which I have) where there is no rise in HR, just a fall in BP which also makes you faint. And there seem to be subtypes of NMH also, as my parasympathetic nervous system is in overdrive so I respond well to medication that increases norepinephrine in the synapses. I think many call all types of orthostatic intolerance POTS, but this is not true and in order to treat the patient you need to dig down to the subtype.
  18. @Sarah TeeI see that you are in Australia which brings to mind Greg Page (Wiggles guy with dysautonomia). I don’t know how hard he is to contact but I’d be pretty sure he would have checked out all the dysautonomia-literate doctors in Australia and could perhaps suggest someone. He used to be on a patient forum but that forum is no more.
  19. My autonomic specialist was happy to leave an “as needed” order at a local hospital infusion center. He felt that 2 liters was the minimum “dose” and that it should be given slowly. Could you say more about that? I have to take a prescription anticoagulant so that could be a problem so me if it affects blood viscosity to a significant degree.
  20. The Heart Rhythm Society is the professional group that most electrophysiologists belong to. You can find an EP near you who is a fellow of the society here: https://www.hrsonline.org/find-a-specialist Depending on your insurance you can either self-refer or ask your cardiologist or GP to refer you. Good luck!
  21. Are you seeing an electrophysiologist? They are the ones who are interested in arrhythmias. If you can feel them yourself you could invest in a little Kardia Mobile. They cost about $80 and take a medical grade ECG paired with a phone. They are about the size of a credit card and I always carry one with me so that I can record any weirdness and email it to my electrophysiologist. Great technology and they give you a computer generated analysis of your episode.
  22. I know that this is one of the last options in the treatment line but it works for me. I had other reasons for it to be prescribed but I have a model of pacemaker that not only prevents my HR from bottoming out but also stops the PACs and PVCs that usually lead into tachy. It feels so good to have a steady, reliable beat. I saw my electrophysiologist yesterday and also had a device check and it is heading off PACs many times each day. It paces me 98% of the time. There is only one model with this feature I believe—the Abbot Assure. I was eligible for it because I also had chronotropic incompetence and pauses, but just to say that if any EP suggests a pacemaker don’t freak, this one has changed my life.
  23. Could you get a referral to an electrophysiologist? They are cardiologists who specialize in the electrical function of the heart and your HR comes from electrical signals. They are the ones to see for any type of heart rhythm problem. I had a similar HR pattern and it turned out to be tachy-Brady syndrome or sick sinus syndrome which is very treatable. If a cardiologist gave you a heart monitor for a couple of weeks, they would have an exact recording of what is happening. These monitors are one or more electrodes that stick on your chest with a method of broadcasting the data to a device like a cell phone which then sends it to your doctor and the monitoring company. I really hope you can convince your doctor to investigate further as living with HR fluctuations like yours is neither easy nor safe—you could pass out and hit your head!
  24. I really think that is your personal choice! I have a pacemaker and the scar and bulge are obvious but I don't make any effort to hide them. I think it just depends on how you feel about it yourself--medical devices are not shameful in any way. It is just like the decision someone who is getting chemo and loses their hair must make--should they cover their head, wear a wig? Whatever makes them feel comfortable. Best wishes!
  25. I have very mild MCAS—just a tendency to get hives and itches from food, insect bites and a few medications. I think that Dr. Klimas has been implying that mast cell activation could be behind some of our symptoms that don’t seem to be related to it and that the vaccine had a potential to create mast cell activation for some time after vaccination.
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