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kennie

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A treatment which worked for me.
Apr 22^nd, 2009 at 2:53am

Hi everybody. Like you I am a clusterhead. I began having these appalling head-pains about 12 years ago, lasting about 10 weeks and recurring every 3 years. I'm due to start now, actually. But I want to tell you all about a medication which has kept me pain-free (touch wood) for the last two "seasons'. The drug is called Pizotifen malate, trade name Sanomigran, and it works by blocking serotonin levels, I believe. The attacks still come, but the pain is reduced to next to nothing. You need a prescription but it's widely available. Hope this works for you like it worked for me.
All the best,
Kennie

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: A treatment which worked for me. Reply #1 - Apr 22^nd, 2009 at 3:13am Hmmmm ... That is a new medication, to me, at least. I will have to have my neuro look into that one! How much do you take, and how often? Thanks for the heads up! Chuck
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kennie CH.com Newbie Offline I Love CH.com! Posts: 4	Re: A treatment which worked for me. Reply #2 - Apr 22^nd, 2009 at 3:31am Hi, It's a prophylactic which means you have to take it all the time during the period you're affected, I take 1x1.5 mg every 24 hours. Before "lucking out" on this, I tried everything to no avail. It worked for me, hope it works for you.
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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: A treatment which worked for me. Reply #3 - Apr 22^nd, 2009 at 3:45am One pill, once a day? Hell, I can do that! I just wonder how it will work, for someone like me, a chronic ... Well, I have been a guinea pig before, no reason not to be again! Piggy Chuck
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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: A treatment which worked for me. Reply #4 - Apr 22^nd, 2009 at 8:40am Chuck, Sorry to be the bearer of bad news, but it's not available in the US. It is available in Canada, though.
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kennie

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Re: A treatment which worked for me.
Reply #5 - Apr 22^nd, 2009 at 9:33am

Not available in the US? No wonder none of the messengers mention it. I live in the UK (working in China at the moment but I've got a 3 month supply in my suitcase). Could you guys order it over the Net? It's the only thing that works for me and my Doctors tried everything including Temegesic - an opiate - which just made me feel sick, and didn't even touch the pain. In my case Pizotifen is the wonder drug and if I was in the States I'd drive North, cross the border and come back with a trunk-full for you all. Wishing you pf, Kennie.

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: A treatment which worked for me. Reply #6 - Apr 22^nd, 2009 at 4:40pm Interesting. Thank you for sharing what works for you Kennie and I am glad it helps! mel p.s. I'll be watching this thread to see others input on the chemical makeup of this particular drug.
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AlienSpaceGuy CH.com Old Timer Offline Greetings from outer space Posts: 254 Northpole Gender:	Re: A treatment which worked for me. Reply #7 - Apr 22^nd, 2009 at 6:53pm In the UK Pizotifen is on the list of approved treatments for CH; and it is RXed quite often. However, success stories are rather infrequent.
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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: A treatment which worked for me. Reply #8 - Apr 22^nd, 2009 at 7:07pm Mel, Here's a link to a website where people who are or have taken this drug talk about it Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Pixie-elf

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Re: A treatment which worked for me.
Reply #9 - Apr 23^rd, 2009 at 3:19am

Hmm... Well, if things continue as they are, I might have to speak to my doctor about this.

I already have to order one medication from Canada, Ketotifen (stupid drug company wanted to market it for asthma and not hives. It only works in ALLERGY induced asthma. So the FDA said no.) I'm not having to jab myself with epi constantly anymore.

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Is what I've used to order my ketotifen, however you HAVE to have a real prescription from your doctor. You also have to fax it in, then mail it to 'em. My allergist gave me the site.

PFDAN
Mystina

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As far as I'm concerned, cluster busting has been the best treatment I've tried. No migraines since I started it, and my hits have gotten so much better. Wanna know more?
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It's saved my life.

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ellenjoanne CH.com Junior Offline Posts: 77 Greenfield, WI Gender:	Re: A treatment which worked for me. Reply #10 - Apr 23^rd, 2009 at 10:19am Hmmmmm - VERY intriguing!! THIS I will have to keep an eye on. So far none of the "stop the cycle" prophylactics have been 100% effective for me.
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ellenjoanne

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Greenfield, WI
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Re: A treatment which worked for me.
Reply #11 - Apr 23^rd, 2009 at 10:23am

Melissa wrote on Apr 22^nd, 2009 at 4:40pm:

Interesting. Thank you for sharing what works for you Kennie and I am glad it helps!

mel

p.s. I'll be watching this thread to see others input on the chemical makeup of this particular drug. Cool

The Chemical makeup? - where are you in Cheesehead land? Madison at my old alma mater the UW, doing chemistry, or the med school?

Ellen - Engineering Grad, Univ. of WI Class of '87

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