Wrote long reply then website says I failed security test and its all gone….
Saw neuro after getting lots of info from EDS uk website. (theynhave good closed facebook group too) He thinks upright MRI would be good but knows trust won’t pay for them. He suggested lumbar puncture but we agreed to Diamox trial until I see him again in 6 weeks. Still no physical exam.
Diamox has reduced constant headache but am more confused, word finding harder, tinnitus much worse and still getting sharp pains on head movement/bumps in car etc. Will stick with it.
Gp confirmed that she referred me in October 2013 to NHNN London Autonomic unit. Heard nothing from them yet….but looks like the place I need to be.
Hope you get some answers and help soon.