ME and Intercranial Hypertension (IIH) or Pseudotumor Cerebri

LadyBirb

LadyBirb

Established Member
Anyone else been investigated or diagnosed (comorbid, before, or after ME/cfs?) (I’ve heard it can be chronic for some as well, but haven’t done a lot of reading since its still new and we’re still on the “hope it responds” team I think. Sorry my doctors didn’t give me much info.)

IIH - idiopathic intercranial hypertension
Also known as psuedotumor cerebri
 
LadyBirb said:
Anyone else been investigated or diagnosed (comorbid, before, or after ME/cfs?) (I’ve heard it can be chronic for some as well, but haven’t done a lot of reading since its still new and we’re still on the “hope it responds” team I think. Sorry my doctors didn’t give me much info.)

IIH - idiopathic intercranial hypertension
Also known as psuedotumor cerebri
Click to expand...

Might be of use: https://www.me-pedia.org/wiki/Intracranial_hypertension#Idiopathic_intracranial_hypertension

There was a paper on ME and IIH about a year ago in Medical Hypotheses; it's cited here.
 
I have pulsatille tinnitus of fairly recent onset (last 6 months). So I was prescribed an MRI of the brain with and without contrast to rule out intercranial hypertension, brain tumor, and/or venous or arterial malformations. MRI was negative, so the ENT specialist concluded my tinnitus is either idiopathic or imagined.

I have many other ME symptoms that got worse in recent years and then exponentially worse after a late summer flu in 2018, so I assume that the ME I have had for 20 years is progressing. Have had about $120K worth of a medical workup recently, including David Systrom’s iCPET and a skin biopsy for small fiber polyneuropathy.

I can now say to former coworkers that I have cardiac preload failure (negative right atrial pressure at rest that fell further into negative terrain during the CPET), impaired oxygen extraction consistent with mitochondrial dysfunction and/or microscopic left-right shunt, and small fiber polyneuropathy. Those sound more serious than ME/CFS, but - mestinon aside (which isn’t working so far) - have no proven treatments.

But the short answer to your question is “yes”, though I think a spinal tap is usually needed to make a definitive diagnosis of IIH.
 
Interesting story in the news today about a Canadian man who was finally diagnosed with this with help from Facebook groups.

In UnRuh's case, it was Facebook groups — in addition to his committed family doctor — that helped to solve the puzzle.


One day, he found a woman whose experience almost exactly matched his own.

"It was amazing," he said.

The woman had been diagnosed with a CSF leak, she told him.


UnRuh's own neurologist, though, didn't give up and ordered an epidural blood patch, which involves injecting blood in the spine in order to prop up a patient's sagging brain.

"As I was lying there ... everything cleared up, and it was so amazing," he said. "I was literally in tears ... it just was like awakening back into the world again."
 
LadyBirb said:
IIH - idiopathic intercranial hypertension
Also known as psuedotumor cerebri
Click to expand...

We seem to be talking about two different conditions. The opening post refers to intracranial hypertension. That is, increased pressure.

The condition @Mij links is intracranial hypotension. That is decreased pressure (in this case due to a leak of CSF).
Dwane UnRuh was diagnosed with spontaneous intracranial hypotension, a condition known as "brain sagging." But it took a year and a half for doctors to reach a diagnosis, a time during which UnRuh was denied long-term disability benefits.
Click to expand...
 
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