low pressure in brain

hi, had a MRI as in mid March I developed a severe migraine, vomiting on the first couple of days, unable to be upright for several weeks, developed double vision. I've had my eyes checked out, they felt there was a weakness in the muscle in my eyes and ordered an mri. The mri was mostly normal but have been told by the ophthalmologist that I have low pressure in the brain and that it was very unusual. Therefor he didn't know what to make of it. My headache and eyes are much improved now. But I have had attacks like these over a decade ago and am prone to headaches, eye strain/light sensitivity. I am to speak to a neurologist next. Is there anything I should aim to discuss/ask for with her? I am in the uk and I've had M.E. for 31 years, starting severe and improving imperceptibly over time.

 

Could you have a CSF (cerebrospinal fluid) leak? They can happen spontaneously.

https://en.wikipedia.org/wiki/Spontaneous_cerebrospinal_fluid_leak

 

Don't know, but I don't think those are recognised by the nhs/uk. Correct me if I'm wrong.

 

You might find this link helpful :

https://www.stgeorges.nhs.uk/wp-content/uploads/2019/03/NEU_CSFLM_01.pdf

Title : Cerebral Spinal Fluid (CSF) Leaks and Their Management

Written by St George's University Hospitals NHS Trust.

 

Are you, by any chance, confusing the surgery that Jen Brea had done with CSF leaks? They have no relationship that I'm aware of (but I'm not a doctor, so take anything I say with a pinch of salt).

 

No, when I did a search a couple of months ago, a lot of American sites came up about hypotension headaches and csf leaks. Will definitly read the st georges document. Thanks

 

Mmm, they saying two types traumatic (head injury) which I don't fit and spontaneous (caused by hypertension) the opposite of my scan.

 

Ah, so your low pressure is in your blood vessels not your CSF? Then I misunderstood, sorry.

 

I would imagine that's what they mean

 

Something I will ask the neurologist

 

I am not sure if this is the same thing but I have heard of such a thing as “low pressure headaches” which a doctor has mentioned before in relation to ME symptoms/headaches. Whether they meant low blood pressure in the head itself or low blood pressure in general, I don’t know (edit: found out it’s related to low pressure in the head itself), and they did say a neurologist would be the one to check that out. So if it’s that, hopefully your neurologist will be able to help you.

Edit: here’s some more info on this: https://www.webmd.com/migraines-headaches/low-high-pressure-headaches

 

I had treatment for hydrocephalus last year. A hole was drilled somewhere inside my head/brain to allow excess CSF to drain away and reduce the pressure in my head. I did a lot of reading before the surgery (not surprisingly) and discovered that if too much drained away I could expect to get low pressure headaches. People who have lumbar punctures can get them too, if too much CSF is withdrawn.

Anyone who has a shunt installed for hydrocephalus has to get it set properly (these days I think it is done electronically/wirelessly) to reduce the risk of over-drainage or insufficient drainage. I have problems tolerating silicon and other possible materials that shunts could be made from so that is why I was given a new (internal) hole in the head instead.

 

Maybe it is the csf itself. Whenever I've had my blood pressure taken by doctors it's been normal. At home if I do it it's low normal usually 107/62 something like that.

 

My cousin had this too

 

The pressure inside the head from CSF is measured (if only a one-off measurement is required) using a lumbar puncture, it isn't something that can be measured or found out in a GP's surgery. If regular readings of the pressure are needed then the method used might involve the patient having an Ommaya Reservoir installed - it requires the patient to have a valve under the skin on their heads so that doctors and surgeons can just use a needle to remove CSF if necessary. I was threatened with getting one of those too, but they also have silicon parts so they were not suitable for me.

https://en.wikipedia.org/wiki/Ommaya_reservoir

Bear in mind that all my reading and treatment has been geared towards having too much pressure in the head, not too little, so don't take anything I say terribly seriously.

 

Would be interested to know if anyone else had low pressure turn up on their MRI scan. Is it a common finding in folks with M.E. My brother (also has M.E.) has also had an MRi but that wasn't a finding of his.

 

Might you have had high, intracranial pressure, which caused a leak; after which your intracranial pressure is low? There are some reports along those lines over at HR, here. Some report a relief of CFS/ME symptoms after a lumbar puncture or after a presumed leak.
The usual, and most accessible, sign of IIH (idiopathic intracranial hypertension) is papilloedema; and IIH is associated with intraoccular hypertension, apparently; so you might consider your eye problem in that context. I don't know whether the papilloedema would go down, and disappear, after a sudden decrease of the intracranial pressure, or what.
And while one might expect a resolution of CFS/ME symptoms after the IIH is somehow lowered (if, indeed, it causes them, at least in part), some recent discoveries regarding how the brain washes itself during sleep might suggest that making that less efficient is how the IIH messes things up—and intracranial hypotension might mess it up, too.

 

Do you mean an MRI with contrast, or without contrast?

(I had an MRI - without contrast - and nothing about low pressure or anything related to pressure was reported).

 

I am not aware of MRI scans showing low pressure. The effects of high pressure may be seen in terms of brain distortion but I don't know what low pressure would show as. I am assuming that the ophthalmologist was referring to low CSF pressure, not blood pressure (which would not show either).

It doesn't sound like anything related to ME as such. To make sense of it I think you need some clearer information.

 

Thanks for your reply. I'm going to be talking to the neurologist this afternoon. I hoping I'll be able to think enough to ask questions. Maybe ask my Dr for the resulting letter as well, as it's always easier to understand when it's written up. I really don't know what to expect, but i'll soon find out