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hazel-ra

"going legal" - methysergide ?

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Hello!

Has anyone who's had success with clusterbusting "gone legal" with prescription ergot-based drugs? Specifically, I was looking at methysergide.

I haven't had success with HBWR or MG. Years ago, I had some tea with "little helpers", and I experienced headache relief -- but at the time I thought it was just altered perception; I didn't know any better!

I would be nervous about trying to procure a treatment myself, so I wonder if anyone else has taken this route. Would I have to doctor shop? Should I be honest with them? How many doctors know about clusterbusting, anyway?

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The big disadvantage of methysergide (or Sansert as it's known) is that it has to be taken every day, usually multiple times per day, and if one stays on it for six months, a drug holiday has to be taken for a minimum of one month in order to avoid side effects that can cause permanent damage - like a pesky case of fibrosis of the kidneys, lungs or heart valves.

I've taken it with success from time to time over the last 10 years, but that fibrosis thing scares the shit out of me.

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Methysergide worked for me many years ago for a short while then quit working.

Recently the CB methods had failed me so being a bit desperate after a couple months of no sleep, a 4 year break and being a wussy, I found an old prescription from 1992 of sansert I had saved.

Had enough for 3 weeks and it certainly helped a bit this time in reducing the intensity and recovery of the hits. Must have gotten better with age.

Problem was that I got down to 3 days left and with a pharmacist friend searched high and low for someplace to get more or have it made in the U.S. but all conventional pharmacia paths could not find more. I guess the side effects caused enough issues that even Sandoz wont provide any more. I didnt pusue it any harder than that.

May be available in other countries.

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To this day I can still have a compounding pharmacy make it for me. In fact, my insurance company has their own in-house compounding pharmacy that used to make it. But if you don't have insurance, it ain't cheap - about $600 per month for a prescription calling for 2mg, 3x per day.

It's not illegal - just not profitable. Sandoz had the license to sell it as Sansert, but you can get it generically as methysergide maleate.

But when I compare cost and risk of methysergide to $49.95 plus S&H for 500+ RC seeds, it's no contest

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No own experience, but looking at the literature ivDHE does seem to have a better efficiacy than Methysergide:

http://www.ncbi.nlm.nih.gov/pubmed/1960057

http://www.ncbi.nlm.nih.gov/pubmed/15012663

Krabbe AA.: Limited efficacy of methysergide in cluster headache. A clinical experience. Cephalalgia. 1989; 9(Suppl 10): 404–405. (Sorry, no link, no abstract)

Summary from this article: Methysergide (used at up to 12 mg/day) was beneficial without major side effects in 11 (26%) of 42 patients (16 episodic and 26 chronic). There was no real difference in treatment response between the episodic (25%) and the chronic groups (27%). In some other studies placebo did have better results than 25%. But you'll never know, until you've tried it yourself.

Good luck!

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There is another called cafergot. (caffeine + ergotomine) Years ago before 02 or anything else, I used to use it in suppository form.  The pills were too slow to do any good. It worked pretty good. Usually took about 20 minutes to work.

I know some that still use cafergot in pill form. They use 02 and then take a pill. It seems to give them about 10-12 hours of pain free time.

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It's not available in the USA and being pretty obscure, I doubt anyone has tried it for clusters. I've never even heard of it being used for migraines. I wouldn't be too surprised to hear that it has some level of success though.

Bob

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methysergide? Could it be related to lysergide? it might work one time, otherwise the cramping, nightmares, and other weird side effects make it useless. one analouge away from lysergide [l-25] can make a huge difference. why poison yourself w/a bad drug when there are 2 preventative and an abortive that works 100% of the time if the directions are followed exactly. the abortive can be bought online, but you have to extract the salt-it's legal til that part-look up mhrb-good luck, rob

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No own experience, but looking at the literature ivDHE does seem to have a better efficiacy than Methysergide:

about DHE...I have had the IV treatment- a form of Methysergide...had to be in hospital 4 days for the treatment. I was headache free the entire time I had the IV, but two days after the conclusion of the IV therapy- the daily headaches returned.

Also is available in prescription nasal spray- Migranal...not as effective but when take 3x a day- it prevented my daily attacks.  The main ingredient is ergotamine- can be hard on the heart!  So...it is not a long term solution- may be able to break a cycle- I am chronic andit did not break the cycle- just gave me a few days of relief.

Ck

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