ME and Intercranial Hypertension (IIH) or Pseudotumor Cerebri

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

 

My niece was diagnosed with that a few years ago. She had just had her yearly eye exam and everything was good and then two weeks later she suddenly developed blurry vision.

 

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.

 

Thank you that is helpful, I will read!

 

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."