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testy01
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Ergotamine question
« on: May 14th, 2007, 6:17am » |
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All.
I've been getting hit with 7s and 8s about 3 to 5 times every night and have got to get this stopped. I've tried O2 as an abortive. O2 does abort the hit but it's back within a half hour after I turn it off. Tryptans do much the same except the hit is worse. If I abort a Kip-6 with tryptans I get a Kip 7 or 8 an hour later. I've tried both Immigran and Relpax but they seem to be much the same.
So far, the only long-lasting abortive I've found is cafergot but, being oral, it's slow to work. I've tried chewing the tabs and dissolving them in water. The other problem is that if I use it to abort 3 or 4 hits in a night, I've taken the recommended maximum dose for a week. This is beginning to worry me. I can't keep on taking this much ergotamine.
What I was wondering was whether there might be a nasal spray form of ergotamine. If so, it would be quicker and I might even get away with a lower dose to abort a hit.
Anyone know of something like this?
Thanks
Jack
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Bob P
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Re: Ergotamine question
« Reply #1 on: May 14th, 2007, 7:12am » |
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No nasal that I've ever heard of. There used to be a sublingual tab (ergostat) that you melted under your tongue and there used to be an inhaler. The sublingual were good. I didn't like the inhaler because I wasn't sure how much I was getting with each huff. I don't think either of these are made any longer.
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pattik
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Re: Ergotamine question
« Reply #2 on: May 14th, 2007, 8:30am » |
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Jack, I'm sorry to hear that you're finding only partial relief aborting your headaches. I don't have anymore information on the ergotamines, but you may be able to get more effectiveness out of your oxygen if you use a Clustermasx
http://myweb.tiscali.co.uk/tritech/index.html. Also, many people find that if they stay on their O2 an extra five minutes after the pain subsides, it can help with the hits returning so quickly. Some will also slowly taper their LPM's during those last minutes. Hopefully you will find a way to make O2 work better for you.
Patk
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edbeek
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Re: Ergotamine question
« Reply #3 on: May 14th, 2007, 8:54am » |
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Hi Jack,
I am night time episodic and usually get my ch 90 minutes after i go to sleep. In past cycles, I would take Cafergot just as I went to bed as a preventative. This worked for me for many cycles.
Unfortunately Cafergot wasn't effective for me at all last cycle.
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testy01
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Re: Ergotamine question
« Reply #4 on: May 14th, 2007, 11:01am » |
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Bob p
It sounds like the inhaler would be just what I'm looking for. Who knows, I'll keep looking. As far as the sublingual thing goes, I doubt it would be much faster than what I'm doing now. If I dissolve the tabs in water it seems to be almost as fast.
pattik
You have a point about the clustermask. If I get the specifications I can probably get one from the local hospital. I'll give it a try and see if it helps.
edbeek
I'm just the same as you, I get hit about 90 minutes after I go to sleep, . . . and 90 minutes after that, lather, rinse, repeat. *S* I'll try the cafergot as a preventive tonight and see what it does. I keep trying to wean myself away from it but since it's the only thing that works for more than a few minutes, this is difficult.I'll report back tomorrow and let you know.
All
My thanks to all of you for taking the time. It is very much appreciated and I wish all of you a long remission.
All the best
Jack
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Brew
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Re: Ergotamine question
« Reply #5 on: May 14th, 2007, 11:22am » |
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Testy - I have successfully used DHE-45 (dihydroergotamine) intranasal spray to abort in the past. I stopped using it because it made my nose stuffy for hours afterward, but it worked pretty well. It goes by the name Migranal, and you have to break open a glass vial each time you use it.
I have found that Amerge (naratriptan hydrochloride) 2.5mg takes almost 1 hour to take effect, but almost 12 hours to wear off. I can use the O2 for the first hour, then it's pretty much smooth sailing for the next 11.
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Redd
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Re: Ergotamine question
« Reply #6 on: May 14th, 2007, 11:26am » |
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The clustermasx is not available at any medical facility as of yet. They are hand made by a gentleman in the UK.
Someone will be along shortly with a link on how to order one from him directly.
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Bob_Johnson
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Re: Ergotamine question
« Reply #7 on: May 14th, 2007, 11:27am » |
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There used to be an ergot inhaler but it disappeared several years ago. Ergotamine--in any form--has largely disappeared although still available in some non-U.S. areas. Overall, these preparations are not very helpful for CH especially when compared to the triptans.
I'd suggest that you try olanzapine as a possible alternative to the triptans.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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testy01
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Re: Ergotamine question
« Reply #8 on: May 14th, 2007, 1:39pm » |
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Brewcrew
The way I feel right now, a stuffy nose would be a cheap price to pay for a night's sleep. I'll see if I can find this stuff. In any event, I have some friends heading back to the US and I'll see if they can't get me some. What I want right now is a general anesthetic that would just render me unconscious for a while. Trouble is, I can't think of anything strong enough to do the job. Thanks for the tip, if I can find this stuff I'll give it a try.
Redd
In the UK? That might not be too bad. I have some friends in Newcastle that might be able to find this. What is special about it?
Bob_Johnson
I might try the olanzapine but I am permanently off of triptans. I can get Immigran and Relpax over the counter here and have tried them both and the cure is worse than the hit. If I use either of these to abort a Kip 6 or 7, an hour later I'll have an 8 or 9. I don't know why this happens but it is consistent. I've got a box of Relpax setting beside my bed right now that I wouldn't open for worlds. Last cycle I worked myself into a very bad position with those things. I kept trying and the hits kept getting worse and more frequent and I couldn't take the ergot because I had already taken the tryptans. I wound up just toughing it out for 24 hours but that day was really memorable although not in a good way.
All
Thank all of you for answering. I've gotten several good ideas and I'll try them one-by-one until I get something that works. The doctors over here generally don't know what a CH is but I guess that happens in most places. Strangely, I came across a pharmacist that knows exactly what they are and he is trying to help.
Thank you all for your time and efforts.
Jack
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Brew
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Re: Ergotamine question
« Reply #9 on: May 14th, 2007, 2:57pm » |
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I am a big fan of the IV DHE-45 treatments. It takes 3 days in the hospital - one IV push every 8 hours, total of 9 treatments. Both times it broke intractable cycles for me.
Now, though, I skip the Migranal and take either Maxalt or Amerge if I start getting slammed while simultaneously sucking on my O2 bottle. The O2 will abort just about any hit within 10-15 minutes, and before the next one comes the triptan has kicked in. Amerge is good for 10-12 hours, Maxalt good for 4-6 hours. YMMV.
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testy01
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Re: Ergotamine question
« Reply #11 on: May 15th, 2007, 2:09pm » |
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Brewcrew
The DHE-45 treatments sound like some serious medicine. I'll find out if this is available here. I know quite a few doctors around the city and they'll know. What is that like? Is it the side effects that keep you in the hospital or are they just worried that you'll have some kind of allergic reaction or something?
Thanks again
ClusterChris
Thanks, I'll look through that and see if there is anything that can help.
Jack
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Brew
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Re: Ergotamine question
« Reply #12 on: May 15th, 2007, 2:58pm » |
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The only real problem they would be looking for is heart problems. DHE-45 is a powerful vaso constrictor.
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testy01
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Re: Ergotamine question
« Reply #13 on: May 16th, 2007, 2:49am » |
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edbeek
Well, as usual, the cafergot before bedtime that helps you didn't do much for me. I think this thing could be whipped if more than a few people could get the same thing to work for them. Anyway, I tried it for a couple of nights but it didn't seem to buy me much.
Thanks again for mentioning this.
Regards
Jack
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testy01
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Re: Ergotamine question
« Reply #15 on: May 16th, 2007, 9:08am » |
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cluster
Well, if you get the company running, you're assured of at least one customer. 
Jack
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Kate in Oz
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Re: Ergotamine question
« Reply #17 on: May 17th, 2007, 7:01am » |
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Hey Jack,
I'm sorry to hear that your suffering so bad !!!
About 6 yrs ago I was on ergotamine and because of the fear of a hit, as soon as I felt one coming on I'd take a tab. I was getting hit big time and ended up taking more than the recommended dose.  Anyway my cycle lasted longer and was more painful than ever and it turns out I was getting rebound headaches - from the ergotamine.
If you can find something else that works for you, do it. The past couple of years (up til this cycle  ) I've had success with the verapamil - but it takes a couple of weeks to kick in so may not be so good for you now.
Anyways I'm wishing you all the best, hope you get some relief/sleep soon.
Kate
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burnt-toast
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Re: Ergotamine question
« Reply #18 on: May 17th, 2007, 8:58am » |
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Here are two links that may offer some infomation that can help. I'm not real familiar with Ergotamine - Caffergot is the only med. I've had severe reactions to.
http://www.drugs.com
http://www.nlm.nih.gov/medlineplus/druginformation.html
Hope these help,
Tom
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Bob_Johnson
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Re: Ergotamine question
« Reply #19 on: May 17th, 2007, 9:51am » |
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I used the inhaler for several years but found results were always mixed and, overall, not satisfactory. With my discovery of olanzapine, ergot in any form, disappeared from my med shelf.
However, if you can get it, there is a 2mg ergotamine tablet which is disolved your tongue. This is an old trick to use just before bed to block night time/sleep attacks. Not always 100% effective but worth a try because the per dose cost is low.
This same tablet can be used to abort attacks but it's critical to start using it at the very first signs of onset. Any delay reduces effectiveness quickly and even under the best conditions I found results uneven.
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Bob Johnson
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