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Posted by toby (NOT dog) ( on August 18, 2001 at 02:54:19:

This is the same message I just posted in the guestbook, but what the hell. Morning everyone! It's 7am and rather than going back to bed I thought I'd try & string a few words together. 29 yrs old, and have suffered tension headaches, occasional migraines and regular loss of vision in left eye (last 30mins - 1 hour) for years. In last 12 months or so have been on a health kick; bought a mountain bike, started running, weight loss diet, drinking less beer and lots more water, and quit smoking (biggest achievement in life so far). And guess what: going blind nearly every other day, and waking up to 3am pain like meathook through left eye which exits thru left temple. You know the pain, but I thought I was going doo-lally. Have had MRI and cardiovascular x-rays, plus opthalmo-neurologist said "dunno - try not to worry about it". General practitioner advised preparations for sinus, which is now probably dried out for life! Have yet to be diagnosed with CH but am going straight to the top to see Prof. Goadsby nxt month (the ONLY benefit to living in England!). Maybe then I'll be able to get something other than codeine, which I am taking x4 daily + Syndol and/or coproxamol to try and defend myself from this insane pain. Doesn't work, but helps me sleep and makes me docile rather than ratty! Alcohol is No.1 trigger. Only way I can deal with pain is to go for a walk either talking to myself or listening to angry music on headphones. Hope the police don't stop me (I'm always pounding the pavement with tears in my eyes between 3 and 4am) as they would think i was drunk/nuts/out on a robbery! thanks for listening. Toby. p.s does anyone else have eyelid that never seems to return to its usual perkiness anymore? Mine looks pissed all the time, especially after blindness. THANKS X 1000 for this website. Peace to all sufferers.

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