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Earwig

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Everything posted by Earwig

  1. Earwig
    Licorice, eh? I'll have to add that to my arsenal. I've been trying desmopressin acetate recently. Also gave me headaches so I think they'll take me off that when I go in to see my doc on Thursday. I'm hoping they'll try me on Propanol (seems to help EDSers with POTS). Little worried they might say no since I have asthma. Doc thought I had hyperadrenergic POTS before my TTT, but my acetylcholine level was normal. I do think I get adrenaline surges, but the trigger doesn't seem to be standing up. So we shall see.
  2. Earwig
    Thanks for the helpful input, guys. The doctor cut my florinef in half. The nurse practitioner who works with him said I should wait a week before I know for sure if that resolves the worst of my symptoms. And if I'm still struggling, they'll see me back in the office to come up with another plan. I am doing the thigh high 30--40mg stockings, elevating the head of my bed, increasing my salt and fluid intake, and following the exercise protocol they gave me. Something's got to work....
  3. Earwig
    I have HEDS and was diagnosed this summer with POTS. The doctor put me on midodrine first which seemed to make my brain fog worse. We switched to Florinef and now I have a daily headache. I have also gained about 10-15 lbs in a short time which is hard on my joints. My palpitations and fatigue have been lessened, but at what cost? I feel like I was better off before starting the meds. Has anyone had a similar experience? Are there any other meds they can put me on where I don't feel worse???
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