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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> My Botox experience
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Message started by Ann Arborite on Jul 17th, 2012 at 11:50am

Title: My Botox experience
Post by Ann Arborite on Jul 17th, 2012 at 11:50am

Soon into my CH episode this year, my 640mg daily dose of Verapamil, a great preventative in the past, failed to work. I upped the dosage to 800mg daily, but doc urged me to lower it, and CH returned.
In desperation, I asked her to shoot me with Botox.  That night, I got hit with only a Kip 5, and the next night I had no CH (!), so I gradually decreased the Verap to zero... and still no CH.
After a week, and warily, with both an oxygen tank and my trusted Imitrex shooter at my side, I decided to try the ultimate test:  I had a glass of wine... 
The result?  Nothing.  Zilch.  Nada.
I can tell I'm still within my typical 6-week cluster episode because I still get the pressure and the stuffiness, but there's no pain at all.  Very strange.

I'm not claiming that Botox will work for others--the research literature is both tiny and inconclusive. There's also the possibility that it was a merely a coincidence, that my pain just magically disappeared on its own.
But I can say that, for the first time in the 41 years that I've suffered from the Beast, something stopped my pain cycle completely.
Plus, my forehead (or least one half of it) looks unusually good!



Title: Re: My Botox experience
Post by Bob Johnson on Jul 17th, 2012 at 2:29pm
Dear Ann: If I were a rogue, misanthrope, scoundrel, or general AH, I'd write, "maybe you're beginning to age out of having Clusters."

But then, I'm not, so just--GOOD NEWS!

Title: Re: My Botox experience
Post by Doc Leila on Jul 17th, 2012 at 3:21pm
Hi ann
So very happy for you! Please share where and how much botox your doc injected

Please let us know if your cured now!

Title: Re: My Botox experience
Post by Ann Arborite on Jul 17th, 2012 at 3:48pm

I guess it was just a "normal cosmetic dose,"  in a high arc on the left side of my forehead and a bit into my temple.  My doc is not a neurologist, just an internist who also happens to administer Botox for cosmetic purposes, and we tried this merely as an experiment.  Insurance doesn't cover it, of course---it was $242 out of pocket (but worth every single penny, obviously).  Yes, as my message indicated, I haven't had any pain at all for many weeks now, just the other symptoms associated with my cluster episodes: pressure and stuffiness late at night.  The fact that it worked for me is utterly bewildering--I'm very happy, as you can imagine.

Ann Arborite (i.e., resident of the city of Ann Arbor)

Title: Re: My Botox experience
Post by lydia nichole on Jul 17th, 2012 at 3:54pm
That is great! I am thinking of trying it myself very happy for you. Hope you Stay PF.

Title: Re: My Botox experience
Post by Doc Leila on Jul 18th, 2012 at 3:24pm
Well done!
I ask because the literatute speaks of injecting it into the occipital area. Which is the back of the head. I remember a neurologist trying to inject the same areawith cortisone a few yrs ago. Would be very interested to see how a forehead injection worked!

Wishing you all the luck!

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