Posted by Ed Middleton on July 04, 1998 at 12:32:43:
In Reply to: Re: cluster headaches posted by FC on June 01, 1998 at 17:42:08:
My name is ed and I have suffered from clusters for over 20 years. I am now 52 and have still not been able to find anything that causes clusters. When I first started getting them I would take Ergomare and a couple of tylenol #3 and lay down for a while and the headache would stop. About ten yeras ago I went through a period of 18 months without any sign of a headache. However when they came back it was much more severe and much more regular. I saw a specialist in Vancouver B.C. as I am a Canadian and he told me that they go into a stange that he called Chronic Cluster Headaches and will basicly begin to go on for days or weeks at atime without relief. It was interesting the comments about going from a low altitude to a place like arizona as I came across a doctor in Missoula Mt. who was looking into the fact that changes in altitude had an effect on cluster headaches. It was there position that any time you went over 5,000 ft there was a good possiblity of getting a headache. I have noticed when I travel fom my home at 1,100 ft to New Mexico that I really have problems. I have tried all of the medications on the market and must say that at this pont I cannot find anything that helps. I do know that if oxygen helps make sure that you are sitting upright when you take the oxygen for the maximum relief. Laying down sometime does not help. The only way that I can descripe my headaches is to say that it like a red hot rod being pushed beside my left eye through to the back of my head. I find that they most offen wake me from a sleep early in the morning. Over the years I have been able to get some printed material on clusters, but it is very hard to find. I am presently in Denver visting relatives and just took a look on the net as I do not have a computer at home. Unfortunately I will be leaving here tomorrow morning for Canada. I wish you all well and hope that you do find something that will ease the pain but I must say that in 20 years I have not been successful. I do not know of a more debilitating pain. It not only causes pain to you but over time will cause not only pain, but resentment from your family. One thing that I should mention, not that it will get rid of the pain, but will help you to deal with it is a Pain Clinic. I went to a six week in house clinic to help deal with the pain. The down side to that is the fact that once you learn to deal with the pain people will say that you don't look like you are in pain so it can't be that bad.They say that if you have them before you are 30 that most likely you will not have them after. It is primarly a problem for men who are tall and fair as it does not seem to affect women as much. I have been a member of the Migraine Foundation for years and athough they do not have much information they do have some. That is another problem that I have found with the medical proffession is that they keep wanting to classify you as a migraine which it is not. Good luck to you all.