low spinal pressure

Discussion in 'Fibromyalgia Main Forum' started by ajl338, Aug 10, 2008.

  1. ajl338

    ajl338 New Member

    I was just wondering if anyone else has been diagnosed with low pressure in their spinal fluid.

    I have had two episodes of this now both ending up with me in hospital. I have had many tests and investigations but the only thing they come up with is raised levels of anti-ganglas basil anti-bodies but since they havent a clue thats not really helpful.

    All that happens is they put IV caffine into me, which raises the CFS pressure but they dont know why either.

    I am beginning to think that the CFS and low pressure are related. I only ever get an attack on my spine along with a relapse of the ME/CFS. I am thinking that my body basically starts attacking itself, apparently anti-basil-ganglas antibodies are supposed to be in the blood and not the spinal fluid and i end up iller than normal.

    I was wondering if there was anyone who might be interested in this area of CFS/ME as at the moment my doctor is trying to send me to a psychatric ward for a 12 week programme to re-programme my thoughts but i dont think you can just make your spinal fluid leak by thinking about it!

  2. gapsych

    gapsych New Member

    Georgetown University has been studying among other things, spinal fluid pressure. I believe they are finding that sometimes the spinal fluid pressure is high with people with CFS/ME.

    But it sounds like you may have something that is different.

    MARTI-_ZAVALA participated (yea!!!) in the Georgetown study and she may be a useful resource.

    If nothing else, here is a bump for someone who knows more about your condition.

    Keep us posted on your progress.

    Take care.
    [This Message was Edited on 08/11/2008]
  3. ajl338

    ajl338 New Member

    I'm definatly a low pressure spinal person. So much so that they struggle to get fluid out of me when doing a spinal tap.

  4. simonedb

    simonedb Member

    people can definitly have their csf leak and have it not be psychiatric. google george clooney and cfs leak. he hurt himself making "syriana" and said it was worst pain of his life and it made him depressed, who wouldnt be.
    It can be pretty serious, sometimes they do surgery for it.
    I am not sure how he got over it, havent looked into it lately.

    are you in a small town, I would think a competent spinal doc could figure it out if you have a leak.

    as far as stuff getting into our spinal fluid that shouldnt be and vice versa, that is intersting to me as I have both spinal issues and cfids/fm issues. I would like to know more about that. I wonder if its possible I could have had a small tear they missed. I seem to have fluctuating pressure in spine and head---my perception from how I feel. It came on since I let a chiropractor at me for awhile years ago, they definitely did some kind of damage.