A Cluster Headaches story

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I was diagnosed in 2007 - following numerous admissions to hospital - eventually an ED Dr recognised what it was as his flat mate had them . I thought I was having a stroke the 1st couple of times it happened . They go as quick as they come on

my cycle is 12 weeks on and twelve weeks off - with 4-5 clusters a day , last approx 40mins to an hour . Accompanied by insomnia due to the timings of a cpl of the clusters

But even when you don't have them you know uve only got a few hours til the next one strikes - so u never really get true relief , u live in dread of the next one

i am unable to take ANY analgesics especially NSAIDS as they cause anaphylaxis 

beta blockers (even at very low levels ) gave me dangerously low Blood pressure and severe thought blocking (I was like a vegetable - trapped in my own mind unable to talk/express myself)

oxygen does NOTHING

Id tried almost EVERYTHING 

since moving to NZ (4years ago) I was referred to Dr Hill - I'm currently on 3grams of Epilum (1500mg mane and 1500mg nocte ) and Sumtriptan injections immediately when cluster starts

i still feel the pressure and pain but nowhere near as bad as they were

i was getting so depressed previously - and had given up hope on anything ever helping me 

Epilum has its side effects  ( I feel a little dulled and some thought blocking )but so far I'm happy to take it , compared to the pain of wanting to rip your own eye out and bang your head against the wall . Left sided facial dropping, nose and eyes running like a tap turned on

I wish they had a different name for this condition as ppl say "oh yeah I've had a migraine they're awful" -its not a migraine , I'd b greatfull For the pain of a migraine in comparison ( I get migraines also )

it's impossible to explain to ppl