Posted by Jackie M. on August 21, 1998 at 09:28:43:
In Reply to: Need your experience & expertise posted by Michelle S. on August 20, 1998 at 22:23:15:
Michelle,
First of all I think you are wise to solicit the personal experiences of other cluster headache sufferers. I have found that the most important factor in fighting this disorder is you. While we are all fighting the same disorder, we each are unique in our bodies and environments, and so after all is said and done, it is not the doctor who should have the final say on treatment, but the patient. It will help to gain insight through the experience of others.
Secondly, I certainly hope that the Imitrex has been eliminated as treatment since your husband experienced the chest pains.
As for my own experience, I have suffered from episodic clusters for over 24 years. I have suffered episodes which might be considered chronic in that there were times when a cycle would last everyday for over a month, and I've never gone longer than a six month remission. I have tried so many prophylactic medications like and including Verapamil. Because of the very nature of Cluster headaches and their cycles, it is difficult to determine whether or not they are working. I would begin to think that the medication was working, only to realize that what I thought was an effective treatment was most likely just another remission that would have occurred without the med. After many years and meds, I have chosen not to continue anymore prophylactic treatment. For me, the long term use and side effects did not justify taking medication that I was not confident was helping.
Currently the only assistance I use is prayer and a lot of walking around in circles while hyperventilating during attacks. (Along with the hope that someone will finally discover the idiology of these monsters and how to cure them)
All my best to you and your husband.