Thanks so much for your replies,
Firstly, I get a couple of types of headaches, the ones that come on overnight, go through periods when I wake at 2am with terrible headaches and have to get up and sit up till (I thought the codeine/paracetamol worked… may be it’s just being up that helps???)
No empty stella, but do remember note on 1st MRI in 97 that said I had UBO in hypothalamus, one side. No evidence of compression, but boy feels like it, I get the pulsing tinnitus, dizziness, nausea/gastroparesis.
Then I get these terrible migraine headache with projectile vomiting and visual disturbance/photo and phono phobia. These are behind eyes, usually R eye. These are defined episodes (can last days) and have to lie down, can’t stand with these… so could this be the hypotensive episodes? Have had LP in “status migraine” for a week and in hospital when told pressures not elevated, in fact, told they were “good, nice and low” …
I do have neck pain/stiffness/numb patch between my shoulders at base of neck (numb to light pressure, still feel deep pain but not touch), hands go numb, altered taste, feeling of huge lump on L of throat and very tired of it all. Most very grateful of your discussion. I really think there may be something in the idea of there being hyper and hypo tension alternating, sure makes sense, in a strange way, if I have leaks that serve to reduce the pressure, this may account for the lack of compressive changes on MRI, bloody hard to prove, but if I went the route of getting blood patches for CSF leaks, then I wonder if the ICP would go up & I would get the typical radiology findings start to show up??? SO very, very complex, but I read through the raised ICP symptoms and can totally relate. The neuro/endocrine would help explain a lot too. Thanks lots, Bee xx (: