Posted by Jonathan Poulter on October 12, 1998 at 13:21:43:
Hi All,
I've been here before a couple of months ago when I was going through a very bad patch
, near to suicide and severely stressed about the headaches. I've been a cluster sufferer for
6 years now and chronic for just over a year. Until I found this site I had been digging deeper
deeper into my depression. Dumping my lover, telling my friends and family they don't care about my problems grinding on everyone because all I could talk about was clusters and the pain I suffer.
I'd been on Prednisolone for too long, and it had helped drive an already prone to depression guy into
a very big black hole. This site saved me. This site and all the people who posted here have given me hope
I can't explain why, I guess just knowing that I was not alone helped me to grapple the ladder
and pull myself up. Ever since then I've been trying to set-up a self help group in the UK. But to no avail.
I've asked the migraine trust to help, but they have failed to return my calls and seem unwilling to discuss anything other than migraines over the phone. I was wondering if any of you who post here are living in the UK, or preferably south east England. If the migraine trust don't want to help, then I guess this is the best place to ask if anyone else in the UK would like to meet up for a drink and get to know another cluster sufferer.??
Please let me know if you're out there..! :-)
I'll stop waffling in a minute, but just to let you know if you read any of my earlier posts, that I'm off of most medication now including the verapamil. I've noticed an improvement on my state of mind and also the length and strength of the headaches. I now only take Zomig for the attack and when available Oxygen. I also try to fight the headaches using my own will power when I'm at home,
meaning that I will not take any medication, I just sit, close my eyes and try to cope with the pain. If I do this I usually don't suffer from another headache for over two days afterwards. I've been chronic (meaning I haven't had a break in the cluster) since I first took steroids (prednisolone) over a year ago. I'm not sure if the drugs I've taken to prevent the headaches have in some way altered the type of headaches. I'll keep you posted, but it looks promising, as my headaches have gone from every day twice a day while on med (or during short rest periods from the Steroids.) To once every two days and getting less, since I stopped the medication. I think the meds may have been causing repeat headaches, I'm not saying that I wont suffer from clusters, I'm just trying to see if the clusters return to being cluster periods instead of cluster years. I've also noticed my sleeping patterns have returned to normal since I cut out the majority of the medication, meaning I don't need sleeping tablets to get to sleep at night. though I have been told by my neurologist that this is normal, as it was probably the side effects of the steroids. They apparently screw up your sleeping cycles if you have been on them for too long.
Hope you all have a cluster free day, month, year and if poss life.
big hugs to all of you and thanks for your support.
J.