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mkoven

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Everything posted by mkoven

  1. Hi all, It's been a while since I've posted, as I generally am doing better. I have been on 3/4 of a pill of florinef since 2008, and midodrine 5-7.5 mgs as needed, up to 5 times a day. Here's the deal. I'd been taking the global brand since shire stopped making proamatine. Sadly, it looks like Global is stopping production. My choices are now mylan or Sandoz, as those are what my local pharmacies can get. Reviews? thanks!!!
  2. I think swallowing is a brainstem-controlled thing. If you have compression from cci, chiari, or something else, it could be affected. Mine is worse if my neck is not perfectly positioned and when I'm tired. I also have a worse time with liquids, like the back of my throat doesn't know to close. Just had a swallow study, but it was earlier in the day when I'm better. They did see a little liquid penetrate, but not enough to be a danger. I was told to mix this product called "thick-it" to turn liquids to a more pudding like consistency to facilitate swallowing. It does help--just a little gros
  3. I know how frustrating this all is. It does sound like a partial victory. Definitely follow up with the other guy. Of course the problem concretely becomes what to do about the instability, if he is indeed right that the risks are too great. And maybe you will need to be seen by one of the half dozen people in the country who are experienced with this type of problem in eds. Interesting about the gag reflex. Do you have trouble swallowing? That's been one of my recent issues.
  4. I've heard it can also work as a migraine preventive. I've been taking 200mgs/ day for a year. At first, I felt more energy. Now it's hard to say. I generally had worse migraines a year ago, but many things are different, so wouldn't want to speculate causal relation. I'll keep taking it. Not sure I've been taking a fancy brand. any recommendations?
  5. Can't comment on Columbia, but Cleveland is good for diagnosis of any issues. Do a search in the archives. The consensus seems to be, and my experience fits, that they are less good for followup. I also found a certain unwillingness to talk about ans -related issues that weren't specifically hr or bp related. But it was a productive experience for treating my pots/nmh. I'm not cured, but my bp and hr are much more stable. It used to be when I checked, it could be anywhere fromm80/30 to 160/100. Now it always seems to be 110-120/70-80.
  6. I am personally far more comfortable seeing someone who coaxes joints into place through soft-tissue (muscle/fascia) work, then chiropractic. Usually if a joint is out on me, it is a spasming muscle pulling it out. and until the muscle is released, it will keep pulling me out. Plus I do think chiropractic to the neck can be very dangerous for anyone with instability, chiari, vessel fragility, etc.
  7. I was sent to a speech therapist who could find nothing wrong. My shortness of breath co-occurs with drops in bp.
  8. I've had my shortness of breath from ans problems misdiagnosed as vcd. i think a lot of docs don't understand how breathing is affected by dysautonomia
  9. I know prednisone and florinef are different, but I had a &*^ of a time coming off prednisone two years ago, taken for allergic reactions. It took me a very long time to taper off, and I felt autonomically very wrong for months. Time of day may be a factor-- as Flop said, steroids are often given in the morning to reduce adrenal suppression. I was taking pred. 2x a day, which I think made it harder to come off. My pcp was shocked by how rough a time I had. I've since had short (1-2 days) courses of steroids to allow me to be exposed to contrast agents I'm allergic to, and usually have a ba
  10. So sorry to hear about this. Is there someone you could talk to about a VERY slow taper---over months? I know it's hard to cut pills that size to less than a quarter. Maybe a pharmacist could figure out how to dose it out in eighths??? I've had a good experience with florinef so far, but haven't tried to cut or taper. I'm on .075. I hope it's not forever, but it s made all the difference between my being completely housebound and being relatively functional. My bp is about ten points higher than my baseline on it, but still acceptable. I haven't gotten the super-lows I used to get.
  11. I've been told that ttt's are problematic, because they are not standardized. I had my one and only ttt at Cleveland, that was positive for pots and hypotension, without the injection, and on my ans meds (midodrine/florinef). i'm glad it was done there. Where I live, they would have declared it negative unless I actually lost consciousness, which I didn't. So, take ttt's with a grain of salt. Mine said that my tachycardia was worse than my hypotension, but in real life, my hypotension is worse than my tachycardia. I'm glad I had the test, so docs would stop pestering me to get it. but I don't
  12. I've had weird sensations like that with different nerve injuries. When my off-kilter kneecap was pinching something, it felt like I had water running from my inner knee to my ankle. After back surgery (L5-S1), I felt like I was either walking on glass, stepping on a rock, or being stung by a bee on the sole of my foot. Both sensations stopped when the nerve either healed or stop being pinched.
  13. I got a run on my second wearing of a pair of stockings and called the company. They told me that they'd send another pair-- never did though. I find a big difference between brands. But now, when they run, I give up and buy more. I usually end up paying out of pocket, because my insurance only covers jobst... go figure.
  14. thanks to everyone! it's good to know my symptoms are not unheard of. I've been able to sleep the past 2 nights, luckily. But I wake up a lot, and have a hard time settling down. Often it's my joints--my pelvis and spine will keep sliding out of place, and I have to squirm to get them back in (eds). Or I'll get these weird itching attacks, or adrenaline surges. Takes a while to settle down. Ativan used to do the trick, but I'm all out, and don't think I can get more.
  15. Yep--like you, no test abnormality. My event recorder shows periodic sinus tachycardia. couldn't do the tilt table because of my joints, but I get all the symptoms from standing, so the ep felt compfortable with the ncs diagnosis. But eds is the underlying cause, most likely for me.
  16. I did eventually get some sleep, but very fitful. And the temperature disregulation is reallya nnoying-- I go from freezing to boiling, when the thermostat stays the same.
  17. Hi everyone, for the past two nights I've had weird symptoms as I start to fall asleep. Right as I nod off, I awaken with a startle, as I start feeling like I'm gonna pass out (while lying down), get weird pressure in my head, throat tightness, feel my heart race, like I might throw up, itchy, and like a roller coaster sensation in my head. Needless to say, I'm then wide awake. I start relaxing, and the same thing happens again. I've tried changing position-- to no avail. REwind repeat. I just drank some tomato juince, in case I'm dehydrated. But I really need some sleep! Of course my spouse
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