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

[Tired of being sick]

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?

 

[Tired of being sick]

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:[URL='http://www.hfme.org/mesymptoms.htm']M.E. symptoms [/URL]

 

[maryb]

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

 

[Tired of being sick]

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

 

[rebar]

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.

 

[Katherine]

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.

 

[Allyson]

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]

Syringomyelia: MedlinePlus Medical Encyclopedia

Could this be Syringomyelia????
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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:

• Spasms in, or tightness of the leg or hand and arm muscles
• Uncoordinated movement

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:

• MRI of the spine
• MRI of the head
• Spinal CT scan with myelogram (rarely)

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]

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

 

[musicfan50]

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]

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

Ally

 

[Tired of being sick]

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...

 

[taniaaust1]

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]

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]

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

I think Richard Burton may have had it

ALy

 

[Allyson]

the actor not the explorer Burton that is

A