DYSAUTONOMIA (again)

Discussion in 'Fibromyalgia Main Forum' started by Annette2, Dec 3, 2002.

  1. Annette2

    Annette2 New Member

    I just finished reading the articles in the Library about Dysautonomia. I'm convinced I "have it" - symptoms of hypoglycemia, IBS, feeling hot most of the time, occasional dizziness, low blood pressure, etc. So, is this something that is treated? Is it treated as a whole, or do you just treat each symptom separately? What type of a doctor do you go to? Any answers would be of great help to me!

    Annette2
  2. Annette2

    Annette2 New Member

    I just finished reading the articles in the Library about Dysautonomia. I'm convinced I "have it" - symptoms of hypoglycemia, IBS, feeling hot most of the time, occasional dizziness, low blood pressure, etc. So, is this something that is treated? Is it treated as a whole, or do you just treat each symptom separately? What type of a doctor do you go to? Any answers would be of great help to me!

    Annette2
  3. klutzo

    klutzo New Member

    From my reading, it seems like dysautonomia is most often treated at special clinics, staffed primarily by Cardiologists, since it is closely associated with MVP, and is in fact the main symptom of MVPS.
    There is a very good clinic in Birmingham, Ala. for example,and you can find it on the web and locate some good reading that way. Sorry, not allowed to give the website here.
    Symptoms are usually treated individually, since there are many, and people may have mild or major symptoms,and have different symptoms from each other. For example, low blood pressure was just mentioned, but mine suddenly soars with no reason. It is the tight control of the normal range of bodily reactions that is missing. You can go to one extreme or the other and back again. The medication must be individualized for that reason.
    I have a whole folder on MVPS articles I got off the Web. In my search for info on dysautonomia, I found going the MVPS route to be the most profitible.
    Happy reading,
    Klutzo

    P.S. Jelly, I am thrilled Elavil works so well for you. All it did for me was put on 46 lbs. in only 2 months,without eating any extra food!
  4. teach6

    teach6 New Member

    My CFS/FM doc, who happens to be an internist, treats me for dysautonomia. From my first visit to him he knew I had it and immediately began treating it. It took some trial and error with meds, but the difference in how I feel today and how I felt a year ago is incredible.

    A year ago I could only sit up for short periods of time, like 15-20 minutes at a time. Lying down on the exam table didn't help unless the head end was completely down. Anything higher made me short of breath and extremely fatigued.

    After about 10 days of treatment I was certain I was doing much better. So I attended a holiday party with others in my business. I spent half the time lying on a sofa with my feet thrown up over the back. When I drove I kept my left foot on the dashboard, and at stop lights I put both feet up.

    I can now sit up for hours on end. I can walk short distances and feel like I have improved greatly. I'm not sure I will ever return to my original state, but at least now I can do more ADL's without becoming totally exhausted.

    I think it doesn't really matter which type of doctor you use to treat dysautonomia. The most important thing is to find one with lots of experience in dealing with it. That is what I have done.

    Barbara
  5. Annette2

    Annette2 New Member

    Thank you for your replies. I had an EKG-Stress Test done a few months ago and it was normal. I thought I had MVP but it seems I don't. I was having severe shortness of breath, but once I increased taking Effexor it mostly went away. I have an appt. with my Rheumy in February and I'll ask her about it. I don't know what she could do. I don't have plans to see my Family Doctor so I'll have to wait until the next time I see him. I'm still confused about this. I don't know what to do.
  6. Annette2

    Annette2 New Member

    I just read your post that you referred me too. It seems to make sense to me. It seems too weird that we have all of these symptoms that seem to be unrelated. There HAS to be a connecting factor. I'm just concerned that if I take this to a doctor, he or she will look at me like I'm crazy. Do most doctors know and understand Dysautonomia? I don't want to be treated like a hypochondriac. Luckily, my family doctor is very caring and respectful of me. I'm just nervous about bringing this to his attention. Oy vey!
  7. Annette2

    Annette2 New Member

    Thank you for your answer. I live in Indianapolis. We have a lot of excellent medical facilities here. How do I find a clinic that specializes in Dysautonomia? What do I look up in the phone book? Thanks!!!!
  8. klutzo

    klutzo New Member

    Do a websearch! That's how I found out about the clinic in Birmingham. I don't think they exist in every town however, so you might have to travel a bit.
    Klutzo
  9. klutzo

    klutzo New Member

    Yes, I have read about the compression and smaller chest cavity issues in MVP. Is that what your post about bust size was in reference to? I posted to you about that, but I guess you didn't see it. My chest was 3 inches larger on inhale than on exhale. Does that mean I have this problem?
    I've noticed ever since I got costo-chondritis that I can't breathe as deeply,and in fact, I had to stop singing, except in my car where nobody hears! I just don't have the breath anymore. My allergist had me blow into a measuring tube, and the results were low-normal or slightly below normal. Have not had pulmonary studies. I can tell you that one of the drugs I used to take for migraines (Phrenelin) made it possible for me to sing again for a few hours, so it must have loosened something up.
    My one chiropractic experience with FMS was when I was trying to get dx'd with it and my PCP was an Osteopath. He would adjust me and I'd feel much better, until I slept. The next day I'd wake up with incredible pain and no range of motion in my neck. I am afraid to try it again.
    I have gotten great results from physical therapy as far as my neck goes, but have not tried anything for my chest. I do not have the slight frame, tallness, large hands and feet and barrel chest of the typical MVPer...my husband is built like that though and he also has MVP. I had no evidence of an MVP until I got FMS.
    Can you explain the Heart rate Variability theory too?
    Thanks for lending your expertise to this Board.
    Klutzo
    [This Message was Edited on 12/03/2002]
  10. Madelyn

    Madelyn New Member

    I have CF but for about three years I was misdiagnosed as having MVP. The symptoms can be identical! Anyway, I've read a lot about MVP, but I never heard about compression of the heart or lungs, or restriction of the respiration being a cause of dysautonomia. I am convinced that I do have dysautonomia, so this is very interesting! Could you tell more about this please? Thanks!
  11. Annette2

    Annette2 New Member

    I think I'm a bit confused. I've already had a Pulmonary Function Test and it came back normal. As did my EKG-Stress Test. Are you saying I should not question my doctor about Dysautonomia? Thanks!