Posted by Jonathan Poulter on September 08, 1998 at 11:49:24:
I have posted to the guest book saying thanks for the site a it is great to know I'm not
alone, and to be able to give people a link to a place that will explain what I suffer from.
BUT, I'm not that well in my mind at the moment and I have to say that reading entries
that say and I quote: "I have been suffering from clusters for over 20 years now" does not
fill me with joy. I have been suffering from these bastard headaches since I was 20, I'm
now 26, I used to get them seasonally i.e. spring and autumn, without fail for a couple of
months each time and about 20 attacks a month during those periods. 13 months ago I
started a cluster that has not stopped since. I used to say It wasn't a problem in my life as
the bouts would end and I would have a few months of rest bite where all was fantastic in
life. Sadly I don't think that way at the moment. I'm constantly in fear of the pain, I'm on
steroids, I have oxygen canisters in all available places (at the office and at home). I have
taken almost all the drugs that a doctor can prescribe for this condition (bar those my
specialist hasn't heard of yet). I have lost loads of weight, my skin and body have become
ultra sensitive to products ranging from soap powder to shower and shaving gels. I've
become allergic to certain foods like nuts. All this my doctors says is an unfortunate side
affect of the steroids I take. I have been in and out of a very deep depression. Not the
kind where I am always low, I just seem to get moody, sometimes to the point of
wondering if I may die due to the amount of damage I'm doing to my body, and
sometimes even wanting to die. I have some good friends and family who love me, but my
friends can do nothing to help and they don't understand the pain. My family live in
Canada and I often play down my worries, so as not to worry my mother. There are no
self-help groups in the south east of england for Cluster sufferers, I am researching into
setting up one myself, but I'm not sure if I'm strong enough to cope with my own worries,
I look like shit, and I ache all the time. I can't seem to stop feeling guilty about my
headaches, as if I could do anything to stop them anyway. I changed my career and quit
smoking drinking and have turned into a depressed oversensitive, hypochondriac and I
don't like myself for it.. When I think that this could last for another 20 years or till die, I
have to think to myself, if I get them every day for the rest of my life, I'm not sure if it's the
drugs or my mind that will kill me first. I'm very very VERY frightened of my own
depressions and can't seem to do anything to stop the cycle of worrying, getting the
headache, taking the drugs going through the depression, etc. How the hell do you lot
cope for 20 years with something that can control your life like it has mine. I can't even
hold down a job when I'm off sick or just plane of rails on drugs all the time. I'm working
now but I worry about that too.
I'll stop rambling now, I'm sure you all have enough to deal with your own headaches
without hearing a self-pitying 26 year waffle on about a short 6 years.
Jonathan