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About mkoven

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    Advanced Member
  • Birthday 12/23/1966

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    Central Illinois

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  1. Hello my name is Sam, and I am contacting you because I really liked a few items you spoke on in a discussion thread or two, and was wondering if you could share a few thoughts on your journey.  I have been having chest pain off and on for a year, daily, and just found out recently what it is ( vasospasms).  I started calcium channel blockers, has helped.  One thing I wanted to ask you about, is how has your journey been going with the vasospasms/chest pain, any better?  Have you found any way to reverse the trend?  Look forward to hearing back from you, and hope you have found some relief.




  2. hi,

    thanks for you reply - it was really helpful. i have replied - but-

    Can you tell me what ans is?

  3. 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
  4. 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.
  5. I did get a scooter several years ago--more for my joints than ans at the time. the problem is it is big, bulky, hard to disassemble. It is great to be self-propelled. It lives in my office, and I use it for crossing our very large campus. It would be such an ordeal to take it apart and bring it home, and I certainly couldn't do it alone. But I do use scooters in the grocery store if my walker isn't enough. (The odd thing is, I can actually feel woozier if I'm being pushed or if I'm scooting. Like motion sickness, almost. If I can walk, that doesn't happen).
  6. With my insurance I rented one, and after a while, they bought it. With my eds, I can't really wheel myself without shoulder issues, so use it if my spouse is there. I don't always need it, but it's like an umbrella. We take it in the van along with my seatcane. I have a much easier time going on a walk where I'm in constant motion without it. But stop and start, as in shopping or museuming, kills me. so it always comes along if we're going to do something like that. I don't think they're so expensive, but it was no problem getting it approved with a doc's rx. and my doc knows that I try to be
  7. 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?
  8. 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.
  9. 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.
  10. I was sent to a speech therapist who could find nothing wrong. My shortness of breath co-occurs with drops in bp.
  11. 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
  12. 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
  13. 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.
  14. 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
  15. 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.
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