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  1. Yesterday
  2. @POTSius, For me, definitely getting enough sleep and not waiting too long between meals, even if they're just small meals.
  3. So sorry this happened. Hope you are feeling more stable now.
  4. Yes, for the past six years after C. diff and Meniere’s. I get pressure in my ears sitting and worse when standing and my permanent tinnitus gets louder. It feels like my ears are full of pressure. I use to have a high pitched permanent ringing, but after Meniere’s it changed to a fairly loud fan with wooshing sounds intertwined.
  5. @Pistolyou might ask about tramadol for flares. I have taken that in the past without difficulties. At least until the hydroxychloroquine starts working.
  6. @RecipeForDisasterwhich transvagal device do you use? If you can’t public ally say can you please send me a message? I am interested in one that’s only available in countries outside the US and uses an ear clip. Thanks. For me with my AI linked/caused dysautonomia I use SCIG. It helps. It’s not a panacea but every little thing helps. I also find a few minutes (5-10) of light aerobic exercise helps on the days I am rather (as opposed to terribly) fatigued helps. If I am terribly fatigued I take a rest day entirely.
  7. IV fluids, Sequential Compression Devices, weighted blankets, transdermal vagal stimulation... broth, DDAVP. That’s all I can think of that is kind of uncharted.
  8. @Nin - I get this sensation when standing up too quickly. It was explained to me that it is caused by circulation changes in the inner ear and can also be accompanied by dizziness. It is caused by a sudden drop in BP.
  9. Hi - have you tried an SSRI? They help with balancing serotonin - which in turn helps level other neurotransmitters, and is a known effective treatment in POTS. Leg raises and bringing your knees to your chest and straightening back helps me to avoid deconditioning when bedridden. Exercise while lying down is ESSENTIAL - or all of your symptoms will worsen. Even if you only do two exercises and they wear you out completely - if done every day they will help for your fatigue. It may seem like an impossible feat to you right now but trust me - they will help you feel better.
  10. I hope you can find more function and progression. Warmest thoughts go out to you from me. It’s obvious that you are resourceful and not afraid to reach out to others and that shows a lot of strength.
  11. I've had this pressure in my ear from standing for about a year. Initially I thought it was my ears playing up but for me it almost feels like the bloods not getting to head quick enough and that's why I get this whooshing sounds. Got constant ringing in ears as well
  12. Wow pistol it sounds horrific! I can't believe what it done to you. It's crazy just taking medication to help another problem your body would react so bad. Hope you start to feel better and find a alternative medication.
  13. Last week
  14. Definitely IV Fluids!!!!! And a healthy balance of rest and exercise - whatever exercise is tolerated.
  15. That all sounds like h***. Glad you've pulled out of it. I feel similarly about steroids and have refused to take them unless absolutely necessary (really bad rash two years ago was the last time) due to the ridiculous reactions I've had before I even knew what dysautonomia was.
  16. What treatment (medicine, lifestyle, etc) which helps you do you think is the most underrated? A treatment which, despite its good effects, you see little discussion of on these boards, etc. For me, I would say ibuprofen, baking soda (for acid reflux) and self massage for muscle pains The latter seems to work best when done maybe a dozen times on the target muscle per day, even if only for less than a minute each session Please share what has helped you so others can benefit!
  17. Hey girl, Very random, and personal, question.... do you happen to have breast implants?
  18. @p8d and @KiminOrlando - I will ask my PCP about Plaquenil on my upcoming appointment. The only problem would be the stomach side effects - I have a lot of GI issues from HPOTS. Thanks for the suggestion! 🥰
  19. @Pistol! I am glad that you are doing better. Whenever I start or stop just about any med I taper at about 2-3 times what’s recommended because I am so sensitive to everything. My Drs are all fine with this @KimOrlando is correct. Hydroxychloroquine helps a lot with my AI arthritis but it has to be taken daily, not just for flares and takes about 6+ months to start feeling the effects. It’s also nasty on the digestive system so I tapered up on that over months and even had to take a daily tiny dose of Imodium (with gastroenterologist’s permission) to tolerate it. Once I was on the final dose a few months I stopped that. You also have to have yearly eye exams, regular and Visual Field Test and blood work. It also helps with fatigue somewhat. I am glad that you are doing better. Hang in there!
  20. @KiminOrlando - our local allergist checks for food allergies only with blood tests, she claims every other form o testing is inaccurate.
  21. Anybody tried one of these commercial tests? I think the one I am looking at is Everly. The doctors have no idea what is happening to me with my rashes.
  22. No - the cortisone in eyedrops does not go into your blood stream. That differs from person to person. Some people take a few days to bounce back and for others it can be weeks. It also depends on what causes the flare, whether it is something mild - such as barometric pressure changes - or something more severe, like pregnancy or viral illness. It is pretty standard for POTS to have good days and bad days, though.
  23. My autonomic specialist prescribed adderall for me at low doses (about 5 mg as I remember). It was indeed helpful. At low doses it didn't seem to have many side-effects though "coming down" from it did not feel great. In the end I used it only when I had to do a task that required extra energy or concentration, as I have heard of people becoming tolerant to it and needing to raise the dose. One downside is that it is hard to get a doctor to prescribe it and if they do, they have to write a paper script each month rather than prescribing it electronically. He also had me try ritalin but, for me, Adderall was more comfortable as it combines four types of amphetamine salts, each with a different half life.
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