Posted by Tanya (195.92.197.52) on August 29, 1999 at 04:00:59:
In Reply to: CLUSTERS-PLEASE HELP AND COMMENT posted by Graham on August 27, 1999 at 21:45:08:
Hope you read this and are feeling well.
I am from U.K also so I know what fun you're having with the Doc's. They just don't seem to care.
Anyway,I have suffered for about 6/7 and about 3 years I read an article in the library and diagnosed myself with C.H. Later the doc's agreed and I had an appointment with a neuro.
I, like you have tried every available treatment during this past few years and nothing had worked until I was prescribed prednisolone by the neuro. This was about 18 months ago. This was my last choice before the specialists seriously thought about surgery. These are a steroid so you must understand what side effects you may encounter.
I didn't want to take them. As it turns out perhaps I shouldn,t have. I am know dependant on them and am also becoming immune. I have been virtualy fine for the last 6 months other than a slight shadow now and again.
The past few weeks have been bad though so I am on 30 mg. a day agin.
This is the only medication that has even touched these C.H's. As for pain relief the only thing which does work about 30% of the time is 'star jumps'. That's if the pains not to unbearable.
It increases the oxygen levels. If it hasn't gone or eased by 5/10 mins I slap a bag of frozen peas around the back of neck. Try and sit as still as possible while you drink a strong coffee. Sugar and milk if you like.This dilates the veins.
Good luck to you fellow U.K sufferer.Let me know how you get on.I have been diagnosed as being chronic for the last year. Sounds to me as though you are as well. Drinking is a bummer.But,on the prednisolone I still drink and am o.k. Think it may even be cheaper to reach the desired effect when taking this med. As for stress. Like you, the more stress in my life the headaches are less common or usualy non-existant.(Sorry about the terrible spellings)
We have the U.K doctors baffled with this condition. I advise you see your doc and ask him about prednisolone. It has to be a high dose to start. I started on 30mg and reduced by 5 each week. Trouble is I can't cope with just 5 any more. I have now been taking them for so long at such a high level I dread to think what I have done to mysef.Be warned!