Posted by slloyd (24.4.255.229) on October 14, 2000 at 22:41:29:
I am a chronic cluster head who has tried many meds over the years. Fall is always the worst and the latest bad peak included one to three breakthroughs (I was using topomax and verapamil as preventatives) per day, with some resisting imitrex inhalers and oxygen as abortives and lasting up to four hours. I went to my doctor (Robbins), and he gave me two series for a total of 9 shots of Botox (denatures Colostridium botulinum [food poisonin] toxin) around my right eye. Since the day of the first shots, one week ago, I have had no CH's. I have, however, had an almost constant throbbinbg or fluttering in my sinus and am going to see an ENT on Monday to find out if that may be a weather or allergy related trigger (I have allergies and have broken my nose twice [life is rough]). Dr. Robbins told me that he had another CH patient that had scheduled the Rhizotomy surgery (partial freezing of the trigeminal nerve) who got the Botox injections. This patient went from 5 attacks per day to 1 and has chosen not to undergo the surgery (that was one year ago).
I am writing this to let you know that Dr. Robbins, a well-respected headache doctor, feels that Botox holds promise as a treatment for CH patients who do not respond well to conventional medication. It acts by paritally paralyzing the offending nerves for as much as several months at a time and may break people out of their cycles.
Also, the cost to me was about $400, but since it was coded as a nerve block and not named specifically, my insurance may pick it up. Truthfully (and luckily), I can afford it if it does't. Fortunately, Dr. Robbins told me that a change in the production of Botox will cut the cost in half in about a month. The shots were just beneath the skin, painless, and without side effects.
I hope this information is somehow helpful. I know the pain of CH and realize that a lot of you have it far worse than I do. If I can answer any questions, please post or email me. I also talk to Dr. Robbins regularly and would be happy to present any questions to him from the group. I wish you all well.