i was diagnosed with chronic cluster headaches about 6 years ago,they began with an unbearable pain behind and in my right eye which then travelled into my temple and then onto the right side of my head.the pain would bounce from these tree points for up to 3 hours at a time with a break of about half an hour.at the begining for about a year i would have up to five attacks a day. i immediately gave up coffee as it seemed to make them worse.after a week or so of stopping coffee and any other stimulant the duration of them was brought down to between 30 to 45 minutes.the pain level remained the same.i allso came to realise that even the smallest amount of alcohol triggered a major attack.even so much as half a can of beer deep and i could feel the onset of an attack..
i could not even get down half a can before ending up in severe pain.
another trigger i found was cannabis..although this was hit and miss.sometimes after i had a small amount it triggered a ch and sometimes it didn't .there was one time when i felt one comming on and rolled myself a small joint which killed it in minutes.but 9 times out of ten within 20 minutes of smoking cannabis i would have a major attack..i dont know if this is due to the quality of the cannabis or maybe something else.
about a year ago a was in the middle of a major attack when the pain intensified in the top of my head to the point it felt my whole crown was being frozen.the pain then shifted to the left side of my head and since that day nearly all attacks have occured on the left side of my head starting in my left eye or temple .occasionally the pain will radiate slightly to the right but not very often..i hear it is rare for clusters to change sides but mine have..in the last year i have not had a major cluster on the right side.
i have tried all medications to no help,i have had cat scans and mri,s and all ive been able to find out is that i have moderate visceral disease in the white matter of my brain,but apparently this is not known to be a cause for ch.
in the last 7 years i have not gone more than 7 days without an attack.
the only thing that gets me through is my faith in god and my family.i feel sorry for my wife as she has seen me in some horrifying states and she cant do anything to help.
up to this point i have hidden my pain from my son,thank god he's not my biological son so handing them to him by hereditary means is not a worry.
but i now live with the truth that there is no help,no treatment,no cure .
in seven years i have tried everything,and i do mean everything.to no avail..
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