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That’s exactly what I’m suggesting, that CSF leak (and cerebral hypotension) and hydrocephalus both result in compression of the brain (particularly the brainstem) and whilst the mechanism is very different, there are clear ways in which EDS would prepisdpose us to both conditions. There is are conditions pituitary pseudotumor and pesudo cerebi where compression can lead to tumour like syndromes. I have occassional spikes in prolactin but usually normal but I still produce breast milk (since 24, didn’t have child til 36). On another endocrine front, I have thyroid nodules and cysts on ovaries… I’m really curious about the effect of brain compression and endocrine dysfunction… I wonder about lots of things, like if our brains are perceiving raised pressure (even in the case of cerebral hypotension and brain sagging into spine) then things like fluid dumping and to reduce ICP could be a possibility? Could the fevers and dysautonomia/episodes of strange neurological symptoms and hypoglycaemia I get be part of the picture of CNS response to CSF leak.
I also remeber reading about the hypothalamic pituitary axis and CFS/ME OOH-NOOH cycle… could it be a there is a physical route to fatigue via brain compression??
I have “UBO” (Unifentified Bright Objects) on T2 MRI scans. I wonder how common this is in people with EDS and neuro/endocrine problems. Bee
Another link on cerebral HYPOtension
CSF Leaks and Spontaneous Intracranial Hypotension | Serendip’s Exchange
Spontaneous Intracranial Hypotension (SIH) is a condition where a patient gets …See More