JulieisFree Orthostatic Intolerance Fatigue

Discussion in 'Fibromyalgia Main Forum' started by Gretchen12, Apr 27, 2006.

  1. Gretchen12

    Gretchen12 New Member

    Hi Julie,

    What medications did you take for orthostatic intolerance?

    I love your post with the quotes!

    Gretchen
  2. julieisfree05

    julieisfree05 New Member

    Hi Gretchen,

    I've only taken on medication for OI. When I read the article about Dr. Mena's research on low blood flow to the brain and NeuroSPECT scans, it also said he was using "Nimotop" to treat the problem.

    Here's a link that describes it:

    www.rxlist.com/cgi/generic2/nimodip.htm

    It's usually used in the ER for people who are showing signs that they have had a stroke, or are at risk for one. This med increases blood flow to the brain quickly and "pushes" and blood clots out of the brain's vascular system before they can burst the blood vessels and cause damage. If you have too little blood going to your brain, it may help via the same action.

    My neurologist was working with hospitals all over CA to set up "quick response" ER procedures for people with symptoms of stroke. He was very familiar with this drug, so he agreed to prescribe it for me.

    The first time I used it, it was like someone turning a light on in a dark basement. The cognitive problems I'd had (a documented 49 pt drop in IQ) got significantly better, and the OI got better too. Not "cured", but it helped.

    The biggest problems are that it's VERY expensive (of course..) and it has a very short half-life so you have to take it a couple of times a day. It can also cause high blood pressure and make migraines worse if you get them.

    I ended up taking it for a couple of years, intermittently, because it did cause migraines sometimes. Eventually, the benefits weren't worth the problems, but I never felt as "brain-fogged" again even after I stopped using it.

    I've never used Florinef, but know people who've had good results with it for OI.

    Glad you like the quotes..:)

    Hope this helps,

    julie (is free!)

    'cause when your soul is bleedin'
    what you're really needin'
    is the kindness
    of strangers.. - Radney Foster
  3. julieisfree05

    julieisfree05 New Member

    Orthostatic Intolerance occurs when the blood flow to the brain is "low" - especially while standing. It's also called "hypo" (low) perfusion.

    It's like when you stand up too quickly and get dizzy and feel like you're going to pass out?

    The part of the brain that regulates heart rate, body temp, breathing, and other things that happen without you thinking about it, is the autonomous nervous system. You don't have to "will" your heart to beat, the ANS does it for you - although there are ways to learn to manipulate the ANS.

    PWFM/CFIDS have dysfunction in their ANS, which may account for the hypo-perfusion shown on NeuroSPECT scans. When you are standing up and feel like you are so tired that you have to sit down or you will pass out, it may be OI - not "fatigue".

    This doesn't mean that the feeling of being "tired" all the time is caused ONLY by OI, it's just one of the things that may be described as "fatigue" because the patient doesn't have the right word for it.

    For the first few months that I was ill, I was virtually bedridden with OI. I was sleeping almost all the time, so I really was "tired". However, when I had to get out of bed to go to the bathroom, I couldn't even walk a few yards, or I would pass out. I had to crawl on my hands and knees or I would actually faint. Later, my doctors explained that this was more descriptive of OI than "fatigue". If you sweat while standing still for more than a few minutes, it can also be a sign of OI.

    I hope this helps!

    julie (is free!)

    Freedom's just another word for
    nothin' left to lose..

    - Kris Kristofferson
  4. ANNXYZ

    ANNXYZ New Member

    Thank you for sharing this . Many ( or most ) of us suffer with this . Often, when I stand up , I feel like my body
    is made of cement - almost too heavy to drag around .
    Also , if I stand still or in one position, it seems much worse . For somme strange reason, it does not seem as bad
    when I walk continuously .

    I think this may be the same as the neurally mediated hypotension .
  5. julieisfree05

    julieisfree05 New Member

    Getchen,

    I think they are basically the same thing, but I don't have the "definition" of NMH..

    julie (is free!)

    What you do
    means a whole lot more
    than anything
    you have to say.. - Radney Foster