BarbinIndiana:

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Jul 16, 2006.

  1. kholmes

    kholmes New Member

    You mentioned in the thread on breathing problems that you were diagnosed with cardiogenic syncope (if I have the name right). I also have difficulty breathing, and I've had orthostatic intolerance for over a year. I can't walk farther than about forty feet without having shakiness and difficulty breathing.

    Have you found anything that helps with this problem? I drink a lot of water and occasionally add a teaspoon of salt. I actually called Dr. Peter Rowe at MIT University, who is a specialist in CFS and neurally mediated hypotension. But I haven't tried any drug therapy for it yet.

    Thanks.

    Kholmes

    [This Message was Edited on 07/16/2006]
  2. barbinindiana

    barbinindiana New Member

    Yes the form I have is neurocardiogenic syncope. After doing my own research to find out what was going on with me, I came across info on othrostatic intolerance, and the test that proves it is a tilt table test. Went to the doctor and asked for this test. I past out on the table during the test. Wasn't a fun experience to say the least, but now know what was causing all the symptoms I was having.

    The problem for me is that I'm being treated now for high blood pressure and the only meds I know of will rise your blood pressure. My sister also has orthostatic intolerance but has always had a low blood pressure. Her doctor put her on a med for the ortho thing, and her blood pressure got really high, so he had to take her off the med. Her doctor has now refered her to an EP doctor. I'm really at a lost here. I've read that this condiction is really hard to treat, and the meds that are being use doesn't help most people. If you learn of anything, I'd be interested to hear about it.
    It's really sad to see so many people on this board are asking about symptoms they're having that are related to othostatic intolerance, and they have no idea they have it. I told a few here that the symptoms they're having may be caused by this problem. Their doctor's should be catching this. I've learned that most people with CFS have it.
    Barb

  3. kholmes

    kholmes New Member

    Thanks. I'm sorry to hear that you're struggling with high blood pressure. I hadn't heard of carciogenic syncope, but I did a google search on it.

    I think you're absolutely right that many people with CFS have orthostatic or neurally mediated hypotension, which can cause all sorts of problems: weakness, wooziness, breathing problems, difficulty walking or remaining standing, etc.

    How so many doctors can miss this is a mystery. Here in Albuquerque, I have not been able to find a single medical facility with a tilt table, even at the University of New Mexico hospital. But I have a fairly good doctor who did a sort of improvised test in his office and guessed that hypotension is definitely a problem for me.

    You might do a google search on Dr. Peter Rowe and neurally mediated hypotension. His research is mainly in pediatrics and CFS, but he has some good suggestions for dealing with hypotension. There are a number of prescription drugs, but I haven't tried any yet.

    If I come across anything else, I'll let you know, and I hope you'll do the same.

    Kholmes
    [This Message was Edited on 07/16/2006]
  4. barbinindiana

    barbinindiana New Member

    My sister's doctor tested her in his office too. He said he knew she had it, and he didn't want to put her though the ordeal of the tilt table test. I hope I never have to take the tilt table test again. It was a hard thing to go though.

    I wish you all the best,
    Barb