I am a chronic CH suffer, since April 1,2009. After trying practically every med and med combo my neurologist has given up and referred me to a pain management doctor.
He is known for doing Botox injections to relieve the headaches and an experiemental surgery with an electric stimulator.
I am meeting with him next week to talk about the botox injections and am a little nervous.
Has anyone had this procedure? Has it worked?
I would appreciate any feedback on this.

These are the only two items I have.
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Handb Clin Neurol. 2010;97:217-32.
Botulinum neurotoxin in the treatment of headache disorders.
Mauskop A.
Abstract
Botulinum neurotoxin (BoNT) has been in clinical use for the treatment of headaches for over 15 years. Recent double-blind placebo-controlled trials have confirmed the efficacy of BoNT type A (onabtoulinumtoxinA, Botox) in the treatment of chronic migraine.

THE EFFICACY OF BONT IN THE TREATMENT OF EPISODIC MIGRAINE HEADACHES, CLUSTER HEADACHES, AND CHRONIC TENSION-TYPE HEADACHE (TTH) HAS NOT BEEN EXAMINED IN LARGE CONTROLLED TRIALS.

Presumed mechanisms of action of BoNT in headache disorders are the reduction of afferent input induced by muscle relaxation and inhibition of the release of neurotransmitters, such as glutamate and calcitonin gene-related peptide, from peripheral sensory nerve terminals. Over 20 years of extensive clinical experience has established a remarkable safety for BoNT, particularly type A and specifically Botox or onabotulinumtoxinA, which has been used much longer and more widely than any other form or serotype of BoNT. Because BoNT is a biological product, the safety and efficacy of one BoNT formulation cannot be extrapolated to a different one, even of the same serotype.

Copyright © 2011 Elsevier B.V. All rights reserved.

PMID:20816423[PubMed]
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Curr Pain Headache Rep. 2009 Apr;13(2):164-7.
The role of nerve blocks and botulinum toxin injections in the management of cluster headaches.

Ailani J, Young WB.

Jefferson Headache Center, Gibbon Building, 111 South 11th Street, Suite 8130, Philadelphia, PA 19107, USA. jessica.ailani@gmail.com

Cluster headache (CH) is a primary headache syndrome that is classified with the trigeminal autonomic cephalalgias. CH treatment involves three steps: acute attack management, transitional therapy, and preventive therapy. Greater occipital nerve block has been shown to be an effective alternative bridge therapy to oral steroids in CH.

BOTULINUM TOXIN TYPE A HAS RECENTLY BEEN STUDIED AS A NEW PREVENTIVE TREATMENT FOR PATIENTS WITH CHRONIC CH, WITH LIMITED SUCCESS.

Publication Types:
Review

PMID: 19272284 [PubMed]

It did nothing for Thebb except smooth out his wrinkles.

       Potter

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Have you consulted a headache specialist?
Overall, pain clinics have not received good reports here.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Currently I am living in Houston.

I've read up on the procedure but I would like actual CH sufferers to tell me if it has any success with them. I trust the people on this board to give it to me straight.

I recently read a news story about a 19-yr old who was killed in a car accident. She refused to wear a seat belt because a friend of her's, who was wearing a restraint, was killed in a wreck a year earlier. Her conclusion: restraints don't work.

It may be nice to hear directly from a few who have used Botox but this is not the kind of solid evidence we want in making impotant medical decisions.

I would never decide to use an experimental treatment solely on the opinions of others. That does not mean it does not help to hear other people's experience with this treatment.....which seems impossible to get on such a "helpful" site.
I'm now sorry i even asked.

I think this is the biggest reason I wouldn't go for it....

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I did botox for a long time.  It stopped my migraines but did nothing for my chronic ch.  I would give it a series of  tries.  Neurologist told me that it can take several applications before it may help.  Although it helped immediatly for migraines.   

Hi witchy.  I too was wanting to try Botox.  I have gone to two different neurologists with varying opinions on this treatment.  The first highly recommended it.  When I asked if he had ever done it on a CH sufferer he admitted he had not, only migrainers, but that I was a perfect candidate for trying it because I'm an episodic sufferer as opposed to chronic.  I wanted a second opionion (botox freaks me OUT but I would probably inject Drano if I thought it would stop a spell).  The 2nd neurologist said it is almost impossible to get the injection "just right" for CH because of the nature or location of the pain and she did not recommend it.  She said it would be trial and error on the injections and might end up costing so much as to give me another kind of headache.  The idea alone of loads of CCs of botox going in my head was enough to make me hold off on trying it until something more definitive could be established.