Posted by John Reynolds in Phoenix, AZ (24.4.254.3) on March 04, 2000 at 00:26:07:
On January 10th, I posted the following:
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I am still trying applying 0.075% Capsaicin Cream (Walgreen's brand) inside the bottom outside of
my cluster-side nostril 3x/day. I'm doing other things at the same time so when my shadows go (my
headaches went away 12/30/99) I won't know for sure what it was. I'm also on Sansert, feverfew
and melatonin. The capsaicin seems to work to stop headaches, cut short cycles and prevent future
cycles. But the evidence and the best methods for using it are so sketchy and varied.
My best source of information so far is Alex Perez, who now lives in Israel. He seems to have the best luck with it. His pharmacy makes a nose drop 0.075%
capsaicin. He would lay back on the bed, tilt his head back and put one nose-drop in the nostril on
the same side as the headache. He would do this at least once a day for 3 weeks and then go into
remission for several months.
This last time he continued with the drops for about 6 wks after the headaches stopped. He has been in remission for over a year. He had been chronic for a number of decades. He’s totally convinced the capsaicin did the trick. Due to other medical problems and drug reactions, he could only use capsaicin and oxygen for his headaches.
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Now, 3/3/00, I’m still using the capsaicin ointment (it is the generic form of Zostrix, it think) and the feverfew. I broke the cluster cycle. Or my new round of chronic cluster headaches… I was a chronic who was controlled by various medications, but would have breakthrough episodes of uncontrolled headaches. But the only times I’ve been able to go off medicines altogether have been 10/98-7/99 and 1-3/00. I think the combo of lithium and capsaicin did the trick 10/98, but I didn’t keep up the capsaicin.
This time I quit the melatonin and sansert when the shadows went away. I’m going to keep up the capsaicin for an extra few months (I already have used it for over 2 months since my last headache, but I am only applying the capsaicin twice a day now that the shadows are gone, too). I still need to get in touch with the doctor in Houston who has been doing trials with capsaicin for clusters. He was out of the country the last time I called his office.
Capsaicin ointment is often ineffective for aborting individual headaches, but it will often stop a cycle short after 1-3 weeks of use. It also can stop the headaches in chronic cluster sufferers like me. Oh, I saw some posts about trying to get the capsaicin far up into the nose. I didn’t do it that way & neither did the patients in Texas. I just put a very small dab onto a q-tip and rubbed it inside the bottom outside of my nose (the part that is round down at the opening of the nostril--the inside of the "bulb" part of the nostril).
Wish me luck. I’ve still had no headaches since 12/30/99 and no shadows since mid-January. I've been traveling to places of various altitudes and been really messing up my sleep schedule--up all night, naps, whatever--and still no headaches. Those things would have brought them on for sure in the past.
I'm just a sample of one, and I know how difficult it is to get my hopes up and try something that worked wonders for others and have it do nothing for me. For example, the water treatment and the yeast connection methods never helped me at all. But I hope I'm onto something that will help more folks and work more consistently. But I know it may just work for a while and then quit, like verapamil, sansert, prednisone, lithium, etc. But it is a method that seems to have no side major effects (other than burning in the nostril--severe the first time or two, but less than a 3 on the kip scale--then just slight warmth; but never get it in your eyes!!!). The lithium and sansert would sometimes make me a real zombie; the verapamil would cause constipation, swollen ankles and slow my pulse way down; and prednisone would sometimes make me nasty toward my family (mood change to make me a "big meanie") and gain weight (as did the sansert). And even those stop working after a while, if I use something else for a while and then go back to any of them later, they start working again. So I would rather switch back & forth between capsaicin & a combo of verapamil and prednisone then have to include use lithium or sansert.
I'll be back on the board after I talk to the neurologist in Houston.
pfd&n,
John in Phoenix
P.S. You are all in my prayers daily. The prayers may be what's working. Or what led me to the capsaicin.