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Topic: Cafergot (Read 3666 times) |
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ferris
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This is the first time I’ve posted to the message board.
I am thirty-five, male, and I’ve been suffering with cluster headaches for twelve years now. My clusters have gotten quite far apart; my last was over two years ago. I had just found this site near the end of my last bout. So it was with some frustration that I found myself perusing the site again this Christmas.
It’s simultaneously comforting and saddening that so many people know what I go through.
This cluster has been a particularly bad one; I’ve been getting three or four a day. The last two weeks of my life has been nothing but pain management. I finally know what a kip 9 feels like. One word; suicidal. Seven or eights I can do standing on my head. But nine.
My clusters normally last four weeks, give or take. I was on imitrex 6mg injections, which were fine, but only good for twice a day. I had used O2 as an abortive the last time ‘round with some success. So I went to my new family doc when the CHs returned, to get more imitrex and syringes and to talk about O2.
Imagine my surprise when he doesn’t want to give me the O2. He has a better idea. Cafergot.
He wants me to take Cafergot as a prophylactic twice a day, even though it’s not meant to be taken that way. And it gets more interesting. Because of interaction issues, I can’t shoot imitrex within 24 hours of having the cafergot. As you can imagine, I didn’t like the idea of losing the benefit of the one thing that almost never fails me, in favour of trying something new that might not work. So I waited for a day that I could afford to lose the whole day in nothing but pain and codeine fog. It was two weeks into what is normally a four week cluster that I took the plunge.
That was Friday.
It’s now Sunday. I’ve been pain free for more than forty-eight hours.
Not one.
Oh, the shadows are still there, no question. But no headaches. Not one. The shadows show up when I go outside or anywhere bright. But no headaches.
Has anyone else been using Cafergot twice daily during a cluster? I feel like I might have my life back.
Yer old pal
Ferris
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Jasmyn
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Re: Cafergot
« Reply #1 on: Jan 8th, 2006, 6:23pm » |
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Hi Ferris.
Firstly, if you take Imitrex again go and look at the Imitrex tip on the left. You can get at least 3 shots from one injection and it is still effective.
You have to see another doc if he doesn't want to give you O2! It is the best abortive without side effects. Trex can give you rebound headaches.
I've used Cafergot and Verapamil together and injected with Imitrex. I don't advise it.
I'm glad it is working for you and hope you stay PF.
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Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
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BK
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Re: Cafergot
« Reply #2 on: Jan 8th, 2006, 7:10pm » |
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Cafergot is an ergot and isn't meant to take routinely. Here is a med. warning I found: If you take too much Cafergot or if you take it too often, you may have an increased risk of serious side effects such as "ergotism" or retroperitoneal or pleuropulmonary fibrosis. You may also have side effects such as headaches, tiredness, runny nose and muscle pain when you stop using it.
I've tried cafergot as an abortive but had problems with it. It's great that it has prevented ch for you but with the serious potential side effects I would opt for going with a safer preventative such as Verapamil.
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AussieBrian
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Re: Cafergot
« Reply #3 on: Jan 8th, 2006, 8:26pm » |
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I can personally vouch for another side effect of Caffer-gotcha. An idiot neuro I visited gave me some as an abortive (reasonably successful) then prescribed me another drug I'd never heard of to take twice daily.
It was the same bloody thing under a different name, eh, so now I'm to something like 26 a week!
Woke up one morning with a sprained ankle and thought little of it. Next morning my other ankle was sprained, too, along with my knee. A very slow trip to the pharmacy to find the stuff has a habit of restricting blood flow to the extremities and next up it's gangrene.
Same with anything, ferris. If it works for you that's great just make sure you stay in control.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Bob P
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Re: Cafergot
« Reply #4 on: Jan 9th, 2006, 6:08am » |
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I've used cafergot to treat my clusters for the past 30+ years. Tablets, inhalers and sublingual. It's never worked as a preventative for me. I've taken up to 30 per week as an abortive, which is 3 times the allowable amount and it doesn't stop my attacks. It's slow to work so I have to have O2 along with it.
I've read about it being used as a preventative in some articles though.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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chewy
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Quote:| I've taken up to 30 per week as an abortive, which is 3 times the allowable amount and it doesn't stop my attacks. |
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Then why continue to use it?
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burnt-toast
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Re: Cafergot
« Reply #6 on: Jan 9th, 2006, 8:19am » |
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Welcome Aboard.
Cafergot is the only med. that I've had bad reactions to.
It is one of the more common meds. used in treating CH and is prescribed as both an abortive and preventative. Like just about everything CH'rs take - it can be dangerous.
The following link provides some good use/side effect/dosing information, but your pharmacist is also a valuable source of drug information. Be aware of the side effects, drug/other interactions, etc., if it works for you and you don't have problems - go for it!
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202216.html
Best wishes on your journey,
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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Bob P
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Re: Cafergot
« Reply #7 on: Jan 9th, 2006, 9:58am » |
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Quote:| Then why continue to use it? |
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When I say it doesn't stop my attacks I mean it diesn't act as a preventative. I still get 2-3 attacks a day. It does act as an abortive. With O2 only the attack often comes back in 10-15 minutes. Taking cafergot before hitting the O2 keeps the attack from coming back after I quit huffing.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Guiseppi
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Re: Cafergot
« Reply #8 on: Jan 9th, 2006, 11:13am » |
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I use cafergot as an abortive. I found when I'm in the heart of a cycle, oxygen will abort a HA, but it'll return within 10 minutes of discontiuing the oxygen. The subsequent headaches would build faster and oxygen would have less of an abortive affect on it.
I now take one to two cafergot as soon as the first stab starts and start with the oxygen. Within 10 mnutes the oxygen has usually beaten it back and I guess the cafergot holds it at bay. I rarely get hit more then twice a day so dosing has never been a real issue.
20 or so years ago I was prescribed just cafergot to be taken at the start of a headache. With the speed mine go from 0-8, cafergot by itself was completely worthless. I'd sure try and talk the doc into at least trying the oxygen/cafergot combo. Good luck.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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StressFree
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Re: Cafergot
« Reply #9 on: Jan 9th, 2006, 12:34pm » |
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One benign side effect many get from Cafergot is nausea. At 2mg of ergotamine I had lasting nausea, I'd cut the tabs in half for 1mg. Caffergot probably only comes in 1mg and it has belladonna which is actually a poison at high doses. It did seem to work well for a lot of my cycles. Unfortunately sometimes, like pain drugs, it seemed the cluster attacks would find their way around it - and that always seems to make the attacks worse. Try to get Caffergot PB if it is availbable, or there is another drug Bellergal-S that is actually for menopause with the same kind of drugs in it. There is a small amount of Pentobarbital (Phenobarbital in the Bellergal) that takes the nausea away. It isn't enough to get you really "high" but helps with the nausea. Definately take only as directed. Good luck, Rich
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ferris
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Re: Cafergot
« Reply #10 on: Jan 9th, 2006, 1:11pm » |
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It's now been 72 hours Pain Free. Shadows still, but nothing even remotely bad. And here I thought I had something innovative to share with the group. I too miss the O2, but I understand the reason to be cautious. My last cluster was hitting me particularly hard at night. I'd get on the O2 7 litres per minute, and when the HA would finally go away, I'd fall asleep. Oops.
I've been very lucky with side effects of the cafergot. None that I've noticed, except a possible slight tired feeling. But nothing compared to the effects of T3 and imitrex, which is what I'd been living on for two weeks.
I'm going to follow up on the long-term effects provided by you folks, and I've got a meeting with a pharmacist friend tonight.
Thanks so much for the support. I only wish I could give everyone the experience I've had over the last three days.
yer old pal
ferris
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Jasmyn
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Re: Cafergot
« Reply #11 on: Jan 11th, 2006, 1:14am » |
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on Jan 9th, 2006, 12:34pm, StressFree wrote: Caffergot probably only comes in 1mg and it has belladonna which is actually a
poison at high doses.
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This is a post I posted over 3 years ago:
Re: Virapamil users
« Reply #2 on: Sep 25th, 2002, 2:56pm » Quote Modify
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Danny, I had the same experience. Last year verapamil worked for me but this year it just didn't do the trick. ???
I had no doc here, so by accident when I had a very bad patch, I went to the Farmacia here in Maputo and with alot of braille and sign language that eventually became quite offensive, we agreed that I need something for a headache.
Well, I got a thing called migretil. It contains ergotamine, caffeine, belladonna and paracetamol. I still don't know what in this combination is the one that works with the verapamil.
I started to drink my usual 240mg verapamil plus 2 of these migretils together, even if the warning says not to mix the two.
I'm only shadowing but no full blown attack and the only side effects are heart pulpitations and extreme tiredness.
But please consult a doc before trying this! I have an excuse to overdose because my portuguese may just get me arrested here and I don't want to land in jail with CH. (I can do without the food and water but not my meds!)
------------------------------------------------------------------------ --------------------------
In South Africa I can get Migril that also contains Ergotamien but with no Belladonna in it and I found that it just does not work. As soon as I add the Belladonna, that you can buy in the form of a herbal remedy called Tonsolite, it becomes effective. So now I'm asking the question:
"Is it the age old properties of Belladonna - pain relief - or the ergotamine that does the actual job?"
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| « Last Edit: Jan 11th, 2006, 1:16am by Jasmyn » |
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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StressFree
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Re: Cafergot
« Reply #12 on: Jan 11th, 2006, 4:34pm » |
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Jasmyn,
Interesting regarding the ergotamine not effective for you without the belladonna. I think the two likely complement one another. I noticed the Cafergot PB worked much better than pure Ergrotamine sublingal tabs. Again, I think the belladonna and small amount of pentobarbital in Cafergot PB took away much of the anxiety while the ergotamine constricted the blood vessels. A great knock out punch, though like so many other treatment it didn't always last or work every time for me. Ergotamine seemed to have longer lasting effect (when it worked) than the triptan drugs. Maxalt was very effective for me last time though. PFDAN! Rich
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Chuffy
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Re: Cafergot
« Reply #13 on: Jan 14th, 2006, 7:12pm » |
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I used to use Cafergot very succesfully (10 years or so) as a preventative and also to abort as long as I got it down me (tablet form) early enough.
My last episode on Cafergot however was bad, I started to become ill from it and it was no longer woking like it used to.
It was then that I turned to the Clusterbuster's treatment and I have now been Pain Free and Drug Free (manufactured) for over a year.
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www.site full of PF idiots.com
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ferris
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Re: Cafergot
« Reply #14 on: Jan 15th, 2006, 12:30am » |
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Well, it was a pretty good week. i went pain free for four days. The last couple, though, the CHs are back. Not with the fury they had before, but enough that I'm concerned. My doc has gone ahead and given me the oxygen. Had a bad one today and the O2 put it away in less than five minutes. Not bad, considering I can't shoot the imitrex on the cafergot. So all things considered, I'm going to stay on the cafergot until it becomes useless, which could happen. It's still better than it was; I was getting three or four a day, at the kip7-9 level, and could only shoot imitrex twice.
The good news is, I usually only get the clusters for four weeks at a go. So I'm probably close to the end.
Thanks for sharing your experiences with the cafergot. After weighing the risk/reward, it was a good choice for me... so far.
yer old pal
ferris
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