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I can hear fluid releasing,then instantly relieving pressure at base of skull

Discussion in 'General ME/CFS Discussion' started by Tired of being sick, May 20, 2014.

  1. Tired of being sick

    Tired of being sick Senior Member

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    Only while laying on back though..... then the pressure/pain comes back immediately after I no longer hear the fluid..

    The fluid release only happens for a few seconds.........

    This usually happens at least 3 to 4 times a day.......

    My guess , said fluid is spinal fluid.....

    Anyone else experience this?
  2. Tired of being sick

    Tired of being sick Senior Member

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    No one ever experienced this?

    Because
    Under pain section of ME symptoms:
    Veteran M.E. practitioners sometimes noted that pain is most frequent in the upper spine and neck area

    Here's the link: NAME-US.org ME/CFS Symptoms List

    also:
    Under Neurological signs and symptoms:
    • Pain and pressure at the back of the head (where the head meets the neck)
    Here's the link:M.E. symptoms
  3. maryb

    maryb iherb code TAK122

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    I have a lot of head pressure but don't 'hear fluid'. I have major head, neck/shoulder and back problems.
  4. Tired of being sick

    Tired of being sick Senior Member

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    Sorry to hear that Mary..

    Looks like we're in the same boat,having spinal injuries on top of the disease makes ME a lot worse...

    You are not alone:hug:
  5. rebar

    rebar

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    yes, but I don't hear anything. I'm currently going through a phase of head/neck pressure with some
    pain. I also experience lymph pain in my neck and have off and on for years. I wouldn't assume that
    what sounds like fluid is fluid.
    It may be, but nothing is as it seems with this illness.
  6. Katherine

    Katherine

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    I had stiffness and some pain in the upper spine which then spread to the muscles either side of the upper spine, affecting normal movement of the shoulders. The stiffness then spread to the neck and finally to the scalp muscles creating tension and a feeling of pressure around my head but particularly at the back. I used to be able to move my scalp muscles easily but now I have trouble doing so. There is usually a mild burning/fatigue sensation in those muscles. Might be due to lymphatic problems.
  7. Allyson

    Allyson *****

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    maybe related to Chiari malformation and tethered chord?

    I do not kno a lot about them but that sounds a bit like it
    there is some chiari info later in this thread as it is often related to EhlersDanlos syndrome
    http://forum.notcrazy.net/index.php?topic=9571.0

    good luck

    ALly
    Tired of being sick likes this.
  8. Tired of being sick

    Tired of being sick Senior Member

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    Syringomyelia: MedlinePlus Medical Encyclopedia

    Could this be Syringomyelia????
    Share Printer-friendly version

    Syringomyelia is damage to the spinal cord due to a fluid-filled hole that forms in the cord.

    Causes
    The fluid buildup in syringomyelia may be caused by:

    • Birth defects (especially "chiari malformation," in which part of the brain pushes down onto the spinal cord at the base of the skull).
    • Spinal cord trauma
    • Tumors of the spinal cord
    The fluid-filled cavity usually begins in the neck area. It expands slowly, putting pressure on the spinal cord and slowly causing damage.

    Symptoms
    There may be no symptoms, or symptoms may include:

    • Headache
    • Loss of muscle mass (wasting, atrophy)
    • Muscle function loss, loss of ability to use arms or legs
    • Numbness or decreased feeling
      • Decreased feeling of pain or temperature
      • Less ability to feel when the skin is being touched
      • Neck, shoulders, upper arms, trunk -- in a cape-like pattern
      • Slowly gets worse over time
    • Pain down the arms, neck, or into the middle back or legs
    • Weakness (decreased muscle strength) in the arms or legs
    Other symptoms that may occur with this disease:

    Exams and Tests
    A nervous system (neurologic) examination may show a loss of feeling or movement caused by pressure on the spinal cord.

    Other tests that may be done include:

    Treatment
    The goals of treatment are to stop the spinal cord damage from getting worse and to improve function.

    Surgery to relieve pressure in the spinal cord may be needed. Physical therapy may be needed to improve muscle function.

    The health care provider may need to drain the fluid buildup. See: Ventriculoperitoneal shunting

    Outlook (Prognosis)
    Without treatment, the disorder gets worse very slowly. Over time it will cause severe disability.

    Surgery usually stops the condition from getting worse. About 50% of people will have improvements in nervous system function after surgery.

    Possible Complications
    Without treatment, the condition will lead to:

    • Loss of nervous system function
    • Permanent disability
    Possible complications of surgery include:

    • Infection
    • Other complications of surgery
    When to Contact a Medical Professional
    Call your health care provider if you have symptoms of syringomyelia.

    Prevention
    There is no known way to prevent this condition, other than avoiding injuries to the spinal cord. Getting treated right away slows the disorder from getting worse.

    Alternative Names
    Syrinx

    References
    Rekate HL. Spinal cord disorders. In: Kliegman RM, Stanton BF, St. Geme J, Schor N, Behrman RE, eds. Nelson Textbook of Pediatrics. 19th ed. Philadelphia, Pa: Saunders Elsevier; 2011:chap 598.

    Update Date: 5/21/2012
    Updated by: Luc Jasmin, MD, PhD, Department of Neurosurgery at Cedars-Sinai Medical Center, Los Angeles, and Department of Anatomy at UCSF, San Francisco, CA. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M. Health Solutions, Ebix, Inc.
    Allyson likes this.
  9. Allyson

    Allyson *****

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    yes I have heard tht mentioned in relation to Chiari an EDS too Tired - have you had an MRI?
    THey can now do upright MRI s too

    ALly
  10. musicfan50

    musicfan50

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    I've got it. I had this happen to me some years ago. I don't get it these days as I think the problem has advanced, in my case. But I could hear fluid moving and other weird sounds, sound of velcro etc. fwiw.
    Allyson and Tired of being sick like this.
  11. Allyson

    Allyson *****

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    I also get a " butterfly fluttering" in the ears and tinnitus

    Ally
  12. Tired of being sick

    Tired of being sick Senior Member

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    My guess is,

    It is spinal fluid build up at the base of skull

    suggesting inflammatory brain stem at spinal connection

    not having adequate room at the skull hole area at base of skull

    Causing a constant squeezing pressure

    kinda like over inflating a inner tube inside of tire

    How do you fix it ?

    Just leave some air out.

    Not so simple with Spinal fluid though is it?

    Only if there was a way to make the hole in base of skull bigger...
  13. taniaaust1

    taniaaust1 Senior Member

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    Ive heard that issue related to Chiari before, so I suggest to look into that.

    Cant some Chiari issues be helped by surgery? (I think, I dont trust my memory right now)
    .........

    Ive never heard fluid sounds in my head with my ME. I like most with ME, do get head pressure with it thou... for myself commonly in the temples.. I used to get it in my third eye area early ME years. I cant remember if I ever had it in the back of my head.
    Tired of being sick likes this.
  14. Tired of being sick

    Tired of being sick Senior Member

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    Thank you Ally & Tan...

    I was just looking at my Brain MRI report and

    it says absolutely nothing about my cerebellar tonsils

    let alone downward displacement of them...

    I definitely have all the symptoms except Paralysis

    But if I truly have Chiari

    Paralysis is just around the corner!
    Allyson likes this.
  15. Allyson

    Allyson *****

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    no Chiari can be treated and is not uncommon in EDS so worth looking ito

    I think Richard Burton may have had it

    ALy
  16. Allyson

    Allyson *****

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    the actor not the explorer Burton that is

    A

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