Let me humbly add that .............

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Posted by Jack Boyd ( on January 05, 2000 at 18:05:12:

In Reply to: attn: Newbies - collective experience re: meds that work well posted by gary, one of ye aulde pharts at CHMB on January 05, 2000 at 17:23:10:

Good info Gary but I think you may have undersold the prophylactics:

prophylactics - that fancy term for preventatives - good to know what it means because your Dr is liable to use the term or you may find it in the literature, actually do work for some people.

I have had great success with verapamil, a calcium channel blocker ( often used to treat high blood pressure ). Others have had success with it also. It has worked every time for me.

There are others - prednisone, elavil, lithium and a few others that I can not think of at the moment. These 3 I have mentioned can have serious side effects with long term use.

One of the problems with these prophylactics is that they often do not continue to work. I once used Elavil and it completely stopped my cycle in its tracks. The next cycle it had no effect and did not work at all.

Chronics are truly expert at medications and know all about this phenomenon of something working for awhile and then NOT WORKING.

Abortives are enormously inconvenient - whether it is oxygen, imitrex or whatever.

So I would just add do not give up on the possibility of finding a preventative and one of the best places to start is with verapamil - the most benign of the preventatives in terms of side effects. It does not work for everyone but it has worked completely for me every time for the last 12 years.

I use verapamil only when my cycle begins and when it is over ( believe me we always know when it is over ) I stop. Others have reported that they are epsisodic like me and they have stayed on the verapamil between cycles. There seems to be some evidence that this may make the verapamil less effective when the cycle starts again. But I am not sure.

One other note to Gary - my episodes have been remarkably similar in my 30 years of clustering. They are always 5 or 6 weeks long and the number of attacks in a given cycle are about the same. First few days I will get a CH every other day and then it is every day and then it is several a day and then it tapers off in the last week.

My experience with prophylactics is this - either they work completely or they do not work at all.

One last note - do not take my word for anything - speak to your Dr. and everyone else you can including the people on this site ( even Drummer ).

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