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        Cluster Headache Help and Support >> Cluster Headache Specific >> Anyone tried Methergide?
        
(Message started by: unhappy_jack on Sep 12^th, 2006, 7:05pm)

Title: Anyone tried Methergide?
Post by unhappy_jack on Sep 12^th, 2006, 7:05pm

I think that's the name. I think it's another iteration of Sansert.

My neuro seems to think this is what I need to be on, instead of imitrex-imitrex-imitrex (and a host of other preventatives that don't appear to be working (Verapamil, Indocin, Lithium)

Also, ifa buster hits while on Metherzide(I'd be better to find out the name for sure), are there abortive's that can be used? I'm going to request O2.

I know someone out there has experienced this....

Thanks!
Jack (day 1, week 4)

Title: Re: Anyone tried Methergide?
Post by BigCoffinHunter on Sep 12^th, 2006, 7:18pm

My neuro said that would be his next step for me if the Verapamil didn't pan out. He said he's had very good luck treating people with it, but only wants to use it as a last resort.

Title: Re: Anyone tried Methergide?
Post by pattik on Sep 12^th, 2006, 7:22pm

Sorry that you're having a rough time of it, Jack. I'm not personally familiar with this med, but it has a lot of warnings.
You need to really be monitored by your doc. Here is a link I got off of the OUCH site:
http://www.rxlist.com/cgi/generic3/sansert.htm

Patti

Title: Re: Anyone tried Methergide?
Post by brewcrew on Sep 12^th, 2006, 7:53pm

I started back on methysergide maleate (often referred to as simply methysergide) three and a half weeks ago, and I've been pain free for three and a half weeks minus two days. This is the drug known by its commercial name as Sansert.

I successfully took Sansert 4 or 5 years ago and was shocked to find out it had been taken off the American market. Found out that you can still get it, but you have to go through a non-American pharmacy (to get the brand name) or have a compounding pharmacy make it for you.

From what I know (which is limited), its molecule is one or two atoms away from being full-blown LSD. The side-effects you'll get the first couple of days are just like all the bad part of LSD: puking, diarrhea, jaw clenching, visual auras, etc.

You have to take a one-month holiday every six months, or you will risk fibrosis of the kidneys.

This is the only drug, other than prednisone, that has stopped th beast in its tracks for me. I'm a big fan.

Bill

Edited to add: Yes, you can use oxygen as an abortive while taking methysergide. My doc told me, however, that I should not use any triptans (Imitrex, Maxalt, Amerge, etc.). I haven't even come close to needing them, though.

Title: Re: Anyone tried Methergide?
Post by unsolved1 on Sep 13^th, 2006, 12:01am

I've taken it before too. It didn't help me though.

Don't mix with any Triptans or Ergotamines. I don't think your supposed to take it for more than 6 months @ a time either. I also think It is illegal for a company in America make or sell this drug. It must be purchased from outside the US.

UNsolved

Title: Re: Anyone tried Methergide?
Post by unhappy_jack on Sep 13^th, 2006, 8:33am

Wow! Thanks to all who replied! It's bad enough being helpless to the pain of these things - being helpless (through lack of information) in the treatment is really the pits.

My doc told me that it's a last resort drug, and that I'd be limited in what I could take for a HA (over the counter meds). Also, this episode "should" be about 1/2 over, and I won't continue it for long enough to run into the connective tissue growth problem.

He'd REALLY like me to go on Sansert, but it's "no longer available" - this is his qualifying statement every time he says the name. I wonder what the possibility of finding it online from a different country is? and will they ship to the US, and finally, will it get delivered!

Again - thanks for your help! It's comforting knowing you're here to help me (and a lot of others) out.

J

Title: Re: Anyone tried Methergide?
Post by unsolved1 on Sep 13^th, 2006, 8:46am

just because it can't be made or sold in America, doesn't mean you can't get it. I know the docs @ Diamond thought about putting me on this again ... but was afraid I'd continue with Imitrex use. They were going to get it for me (have it shipped). Your doc could get it if he wanted to without trouble.

UNsolved

Title: Re: Anyone tried Methergide?
Post by BB on Sep 13^th, 2006, 8:55am

Its available in Australia under the name Deseril.

Annette

Title: Re: Anyone tried Methergide?
Post by brewcrew on Sep 13^th, 2006, 10:21am

Here's where I got mine:

http://www.canadian-internet-drugs.com/

With shipping, 100 doses (approx. 1 month supply at 6 mg/day) cost me $124. My insurance will pay half as it is out of network.

I've since learned that my insurance company's long-term in-house pharmacy will make me a 90-day supply for $75.

You can get it in the U.S. - it just has to be whipped up by a compounding pharmacy. Start calling local pharmacies and ask them if they are a compounding pharmacy.

Title: Re: Anyone tried Methergide?
Post by unhappy_jack on Sep 13^th, 2006, 11:32am

I did a little digging into the Canada thing, and found exactly the same price.

Now I'm very curious about this compounding thing... does this mean the pharmacy actually MAKES the drugs? I wouldn't even know where to begin searching.

Any suggestions?

THanks a MILLION!
Jack

Title: Re: Anyone tried Methergide?
Post by brewcrew on Sep 13^th, 2006, 12:25pm

My insurance company is Cigna, and they have their own in-house pharmacy called Tel-Drug.

What I would do is start in the yellow pages. Your smaller, mom & pop places should know where to direct you. Also, look for the word "compounding" in the ads. It means they make it right there (usually means they have to buy a big quantity of it from a wholesaler and put it into capsules).

Title: Re: Anyone tried Methergide?
Post by Mrs_R on Sep 13^th, 2006, 12:26pm

Hi Guys,

I am new here, and am a friend of Helen's!! :) I took Methysergide a few years ago and took Imitrex Injections too - no-one said anything to me about any problems with the two. I certainly was not aware of experiencing any problems.

I don't have it now even though it really helped, because my Neuro retired and the new one wanted to try other things!

Sounds like it is wise to be cautious, just my two penneth!

pf wishes

Mrs R

Title: Re: Anyone tried Methergide?
Post by BB on Sep 13^th, 2006, 6:52pm

Taking Methysergide and Tryptans together can cause heart damage from mild as in palpitation and chest pain to a full blown heart attack.

There have been cases of death reported when people mix the two although its rare.

In some people they seem to do nothing, but better to avoid that risk, you never know when your heart decides to react to the combination.

Annette

Title: Re: Anyone tried Methergide?
Post by unhappy_jack on Sep 13^th, 2006, 7:50pm

Yes - I got the dangerous part. Can start it for a few weeks now - gotta wean off the verapamil and triptans. Oh well... back to the days of taking handfulls of tylenol! I sure hope this stuff works!

He also prescribed migranol spray to use over the next 3 weeks. Another one I have no experience with.

I hope someone has. You've all provided me with a serious amount of information - the kind I can't get from reading a med report, or even a research study. Thanks!

And Welcome Mrs R:)
Jack

Title: Re: Anyone tried Methergide?
Post by brewcrew on Sep 13^th, 2006, 8:10pm

Just FYI, I am taking the methysergide along with verapamil and lithium. Once I'm headache free for one month, my neuro wants to taper me off one at a time.

I've had the Migranol n/s (DHE-45) - it works fine, but leaves me with a totally stuffed up nose for hours afterward. Also, I don't think you're supposed to take Migranol while you're taking Sansert. They're both ergot alkaloids, and they can cause an exponential effect when taken together.

Title: Re: Anyone tried Methergide?
Post by MJ on Sep 14^th, 2006, 12:47am

Jack I had tried Sansert a few times in the way past it didnt work too well for me.

Like Brewcrew, many have had good success with it but I know a few here have had pretty bad reactions as well, worth a try, again just be wary.

Incidentally Imitrex "(and a host of other preventatives that don't appear to be working (Verapamil, Indocin, Lithium)" and more dont work for me either.

Oxygen. Helps 70% of clusterheads (alas not me)
and doesnt interact with other meds to my knowledge,

Title: Re: Anyone tried Methergide?
Post by jon019 on Sep 14^th, 2006, 1:25am

Hi Jack,

Personal opinion here. DROP the tylenol. Don't think it helps the ch's. Hell on the liver too.

I tried methysergide (once). Worst reaction to any med ever. Nausea, stomach pain, sweating, disorientation, malaise, etc, etc, etc. Totally pissed my GP off when I refused to try another dose. He said "24 hr flu" I said excuse me, but FU. Oddly enough our relationship was never quite the same again.

This from a guy who sticks with meds above and beyond all reasonable attempts (The list is endless).

Again, my experience only, which is what you asked for.

Regards,

Jon

Title: Re: Anyone tried Methergide?
Post by brewcrew on Sep 14^th, 2006, 7:21am

on 09/14/06 at 01:25:45, jon019 wrote:

I've gone through all of that each and every time I've started back on it. But for me, at least, it goes away completely after day #2. Now it's like I'm not taking anything, except I'm pain-free. For me, it's more than a fair trade-off. Sorry it didn't work for you. You know how it is - when you find something that works well, you want it to work well for everybody, and that's just not reality.

Title: Re: Anyone tried Methergide?
Post by BMoneeTheMoneeMan on Sep 14^th, 2006, 1:13pm

I have not tried that one.

Is that the same as Methergine? I know methergine is prescribed for women with internal bleeding, it is supposed to reduce or stop the bleeding.

I wonder if it constricts the blood vessels. That would make sense for CH.

PS, I would stay away from tylonol or any other pain meds.

BMonee

Title: Re: Anyone tried Methergide?
Post by brewcrew on Sep 14^th, 2006, 3:24pm

on 09/14/06 at 13:13:37, BMoneeTheMoneeMan wrote:

I've had both, and Methergine (prescribed mainly for post-partum women with abnormal bleeding) didn't get rid of the headaches for me. They say that both are supposed to constrict blood vessels, but I think the "official" book on such things isn't telling the whole story. Methysergide is chemically very similar to LSD (Lysergic acid diethylamide), and it is my belief that both serve as serotonin uptake inhibitors. Blood vessel constriction may be a nice byproduct, but I believe this is the main way it keeps me pain free.

Title: Re: Anyone tried Methergide?
Post by jon019 on Sep 14^th, 2006, 8:46pm

Hi brewcrew,

Thanks for relating your experience. You are a better man than me to power through those side effects. I wish I had this resource back then. Also, wish my GP had a little more ability to analyze my experience rather than dismiss my concerns so out of hand. Maybe I would have gotten some relief.

Very glad you have, and greatly concerned I may have negatively affected others. I try really hard (now that is, after being gently admonished by Barb) to simply relate my OWN experience without discouraging others to try what is out there. It's tough.

To everyone out there, read the posts here, integrate what you read into your own condition, take nothing as gospel, be willing to experiment, AND let us know what you find.

Regards

Jon