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  1. It’s not good to take any migraine pain kill, including Tylenol, for several days in a row because it causes rebound headaches. I have suffered these and feel for you. I take prescription Fioricet but only 2 days a week. I also use a product IceKap, there are several versions that are just what it sounds like—ice packs in a hat. They work remarkably well. The other thing I recently started is daily LDN. That has decreased my frequent, heat related migraines a lot.
  2. Here’s the abdominal binder info.

    VENUZORWaist Trainer Belt for Women - Waist CincherTrimmer - Slimming Body Shaper Belt - SportGirdle Belt.






    1. toomanyproblems


      Thank you so much!

  3. Here’s a good explanation https://thedysautonomiaproject.org/autonomic-function-tests-part-1-valsalva-maneuver/ with video.
  4. Everyone else is correct about wearing them all the time. I have a great abdominal binder that I wear when I know I am going to be upright for long. I do take it off if I am going to be sitting in the recliner and not up and about much. It really helps. I will send you a PM with the brand.
  5. My PCP gave me a script for the lowest dose of alprazolam and I take a quarter to a half tablet in situations like that. I was told that I can dissolve it under my tongue for faster results. I rarely use it but needed to this week and it really helps. I also do breathing with HeartMath which either helps or makes everything worse. I also get out in the backyard and/or distract myself. I won’t check my BP when I am stressed because I don’t want to see the numbers.
  6. I agree completely with @Pistoland @dancer65. I am disabled and house bound and have been for years. I found the book How to be Sick by Toni Bernhardt very helpful in accepting my limitations. Like the others I get down and grumpy when I flare or try to do too much. Then I rest, distract myself and try to remember that I will feel better tomorrow. Another book I read when I am down is The Boy, The Mole, The Fox and The Horse. It’s a short read and it doesn’t really resonate until about half way through but I find it comforting. I reach out to others on this forum that truly understand which helps a lot.
  7. I take it but have hyperadregenic POTS. I have supine HTN and orthostatic hypotension so am a nightmare for the cardiologist. I take the extended release formula and it’s much, much less sedating than the non ER version. I couldn’t tolerate the non ER formula, it really caused fatigue. My BP swings to very high sometimes so we use it and accept the extra OH it causes. It doesn’t do anything for the fatigue so it wouldn’t help with that.
  8. I saw a neuro psychiatrist about 6 months after I got sick and they did memory tests and a bunch of other stuff. I don’t remember why I saw her, it wasn’t for disability. I was in a TERRIBLE state at that time. I had to request to lay down in a dark quiet room mid way through the tests. Definitely do that if you can’t handle it, it proves how difficult it is to simply sit upright for an hour. As @Pistolsays, be honest about how awful this is.
  9. I too am hyperadregenic. My dys neurologist put me on LDN for inflammation because that’s the root cause of my autoimmune disease and dysautonomia. I also am on Plaquenil and SCIG. LDN is the third immunomodulatory drug I am on. It seems to help me. Plaquenil is great for muscle/joint pain, low grade fevers and fatigue and was the first med prescribed for autoimmune disease by my rheumatologist 5 years ago. That lead to the first improvements that allowed me to get to physical therapy. After a positive autoantibody test for alpha a-1 receptors I started SCIG which helped even more but did nothing for BP/HR. I have been on LDN for a couple of months and slowly titrated up to 3mg/day and it *seems* to help everything plus my BP/HR seems more stable as long as I am sufficiently hydrated. It’s not a panacea by any means but I think it brought me out of a 6 week joint pain etc flare and if it is helping with BP/HR it’s the first anti inflammatory to do so. There lots of posts on this forum if you search for it. This might help too https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn
  10. Hi,

     Your recent post about people dropping out of your life really resonated with me. I am 59 years old and would be happy to communicate via email if you like. I have hyperadregenic dysautonomia (OH, tachy, supine HTN), autoimmune disease and I am probably missing a few! I have been sick since 2014 after a viral illness. 


    1. Dystasysta


      Hi Patti  

      Im Sue . That would be nice 

    2. p8d


      Hi Sue.  Please email me at day.p8@pm.me when you can. I look forward to meeting you!


    3. Dystasysta


      Is that thru email here of some kind not familiar or thru my regular gmail .

  11. Compounded LDN isn’t expensive. I pay around $50/3 months I think. So far it seems to be stabilizing lots of things.
  12. @Bobannon your should check with your Dr about wearing compression hose at night but I was told not to. The things that help me sleep and I didn’t sleep for more than a few hours per night for the first 18 months after I got sick are mitrazipine, 1/4 15mg tablet and LDN. I tried literally every sleep aide there is and an extended release alpha blocker helps to stop adrenaline surges. Recently I have had success with listening to bedtime story podcasts. It seems that I am like one of Pavlov’s dogs, I turn it on and out I go. All I know is that I feel so much better on nights I get a good nights sleep. I still have a couple of days a week where I don’t and it’s worse with a flare.
  13. I have a diagnosis of both orthostatic hypotension and tachycardia because my BP plummets on standing while my HR goes nuts so not technically POTS but close enough. While the technical definition is no BP drop every Dr uses slightly different criteria for diagnosis. I was diagnosed at a specialist clinic with a Mayo trained dysautonomia neurologist. I also am hyperadregenic. Every specialist says that the specific diagnosis doesn’t matter so much because most of the treatment is the same. I wouldn’t discount a cardiologist that understands dysautonomia not recommending autoimmune drugs. When I saw mine the first time he told me I should get IG therapy so those that keep up with research AND are open minded might recommend it. My neurologist ordered it but I had a positive ANA and anti Smith antibodies plus a positive alpha a-1 from Celltrend (Germany, see below). The auto antibodies that are implicated in dysautonomia are not part of the standard array that most Drs, including rheumatologists run. There are no commercial labs in the US that do them. The only one is in Germany and many of us have sent our blood there for testing. If you are close to a research center that is investigating this potential cause and can get on a trial you might get it here. Mayo has an existing panel that checks for some rare things but most Drs don’t know about it and it doesn’t check for the ones currently being investigated (alpha, beta, muscarinic and a few others).
  14. Yep, I had this very badly shortly after I was diagnosed and it got terrible on my TTT. I saw a gastroenterologist that works with dysautonomia patients who works with my neurologist. I can’t take omperazole or anything in that class due to side effects. After an endoscopy I was told it was neuro/ANS and put on gabapentin because every time I ate it felt like I was eating glass. I lost 25+ pounds and was hospitalized and put on TPN for 6 weeks so it’s nothing to mess about with if it’s impacting your ability to eat enough. After a few years on gabapentin I slowly (critical) decreased the dose and got off it. I still get it occasionally recently but it seems to be specific to certain foods/supplements which I haven’t quite figured out yet.
  15. Yes but I was switched to carvedilol for better BP control and it has some alpha blocking too, that was over a year ago. I also take guanfacine ER for alpha blocking. I still think for a beta nebivolol was my favorite. It didn’t cause palpitations or fatigue like the others. It’s cardio selective.
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