Posted by Tanya (195.92.197.52) on August 29, 1999 at 03:54:19:
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.