5 years ago, I developed severe orthostatic intolerance, chronic presncope and orthostatic headaches immediately following a forceful valsalva.
I have since been diagnosed with POTS and hypermobile EDS, although I have never been particularly flexible or had joint problems and there is no genetic test at present so whether I actually have it or not, I don’t know.
From the start I have expressed concern about my intracranial pressure, given how my illness came about.
I have had normal MRIs including brain and full spine with contrast to look for a CSF leak, also upright MRIs with possible cranial settling and mild scoliosis of the upper neck. Brain and spinal cord look OK.
I have also had a couple of detailed eye exams to look for papilloedema which were normal.
MR angiogram of head and neck was also normal.
I tried diamox briefly but couldn’t tolerate it, as my main problem is severe orthostatic intolerance. I could put up with any amount of pain on its own, but it is constantly being on the verge of passing out that really makes life not worth living, & diamox being a diuretic worsened that.
My next step is to see Dr Nick Higgins privately in Cambridge for consultation and CT venogram to check venous outflow. I understand treating venous stenosis in suitable patients can bring tremendous relief for cerebral hypoperfusion, since if blood cannot flow out of the head, it backs up and fresh blood cannot flow in.
I also plan to ask Dr Higgins about measuring my intracranial pressure, which is typically done by LP, but I am worried by everything I have read here. I had one nearly 20 years ago which was absolutely fine, but I was healthy then (it was done for muscle twitching).
So has anyone here had a lumbar puncture? How was it, did you learn anything useful from it eg if ICP was high or low, did it cause any problems, ease any symptoms by relieving high pressure if present, or lead to any treatment?