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Clusterspouse
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New member have a queston
« on: Oct 26th, 2004, 3:49pm » |
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Hi,
My husband has been diagnosed and suffers from Clusterheadaches for the last 18 years. His headaches always came in January and ended in March. Usually they start about 5pm and he has 2 or 3 untl about 2:am. After his cycle ends he doesnt have Clusters for about 5 years. This time around his clusters have started early in September, he has tried many of the meds out there with no help, until last week when they put him on Imetrex injections. The doctor also has him on 50mg of Topamax a day. When they started him on the Imetrex he is getting headaches during the day now at least 3 or 4. usually he can abort most ofthese with O2 and hot towels or showers. Theres always one big one though. The Imetrex usually works within 15 minutes. He is still getting his nightly ones also. 1 or 2 he can get through without the shot and one biggy. My question is could this be because of the Imetrex? and also has anyone else tried topamax for prevention?
Also wanted to let you know I think this website is awesome and have found alot of valuable info and realize we are not alone out here with this terrible diesease.
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CS
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Giovanni
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Re: New member have a queston
« Reply #1 on: Oct 26th, 2004, 4:20pm » |
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There has been discussion here about imitrex and prolonged cycles and more frequent headaches. In my case, I believe that the imitrex had caused my cycle to be much longer. The last two major cycles were 4.5 months and 5.5 months compared to about 2 months pre imitrex days. Might be other factors involved, I don't know. 
The imitrex was hard for me to refuse, almost instant relief. I now rely on O2 for an abortive. My cabinet is full of imitex, but I haven't used any in a long time. In a work situation, imitrex was a life saver.
John
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Bob_Johnson
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Re: New member have a queston
« Reply #2 on: Oct 26th, 2004, 4:40pm » |
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If you will search through the messages you will find a good deal of comment about Topamax.
There have been a few medical reports about Imitrex changing cluster patterns and several folks have affirmed that experience. You might print this out and ask the doc for a sample. Some of us have had excellent response aborting an attack with it.
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1: 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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angel-ache
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Re: New member have a queston
« Reply #3 on: Oct 26th, 2004, 8:49pm » |
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Hello-
I started my cycle in September too and I started Imitrex for my first time ever.
In the beginning the imitrex worked a mircle, but I think I became over-zealous with it and then I had what I think is 'rebound attacks'.
I ususally only ache at 630am every morning for about 2 hours kip-8,9's (always late to work darn it) and every 2-3 days in the evening. But, when I was usuing Imitex abundantly, I started having aches at lunch, after work, and again in the evening. They were just as painfull, just shorter attacks.
I quit imitrex. And now I only use it everyother day. My program is Verepmil 80mg 3x's a day (not time released). Melatonin 9mg at bedtime. I have indomethicin, but it hurts my stomache way way too much. I just take it on bad days, twice a day. And then imitrex everyother day, when I feel an attack, other times I just O2.
I hope I helped.
Angela
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"We gather strength from sadness and from pain. Each time we die we learn to live again." Unknown Author
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unsolved1
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Re: New member have a queston
« Reply #4 on: Oct 27th, 2004, 8:32pm » |
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Yes, Imitrex could cause rebound headaches. But, sometimes the pain is so bad you have to take it anyways.
Topomax is commonly prescribed for CH. Usual doses are 100 - 200 mg day.
About 1 in 50 adults taking Topamax have developed kidney stones. They are more common in men and in those who have had them before. They also may be more likely to occur if Diamox (acetazolamide) or Zonegran (zonisamide) is also taken or if the ketogenic diet (a special diet sometimes used to control seizures in children) is followed. Topamax therefore should be used cautiously in people taking Diamox or Zonegran or using the ketogenic diet.
To help prevent kidney stones, drink plenty of water, juice, or other fluids (8 glasses every day for adults). Sharp pains in your side or lower back may signal the onset of a kidney stone. Consult a doctor immediately or go to the emergency room.
Unsolved
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aggiegran
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Re: New member have a queston
« Reply #5 on: Oct 28th, 2004, 9:30pm » |
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Hi, My name is Ann and I have had Cluster Headaches for the last 16 yrs. and they come just as regular as rain, I'll have them for 4 months every nite and sometimes during the day, then they will stop only to return 3 months later for another 4 months .....It takes over your life, you are afraid to leave the house .....I have had all the Tests, and have been given all the maintenance drugs to try but to no avail....then two yrs ago I started taking the imitrex shots and they knock it down to where I can at least function, my insurance changed and the shots went up I paid 12.00 for 6 shots before, Now they have gone up to 579.00 for 6 shots, can not afford them now so I'm back to square one...I cannot take the Topanax cause I get a rebound headach from it...Tell your hubby I wish him all the luck in the world....By the way I went to a world renoun headach doctor and he gave me the same drugs my GP did.....so I'm still searching.....
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BobG
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Re: New member have a queston
« Reply #6 on: Oct 28th, 2004, 9:49pm » |
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Hi Ann. Welcome to the board. Sorry to hear that you are one of us.
Have you tried pure oxygen? There is an 'oxygen info' button on the left side of your screen.
How about a preventative med? Verapamil maybe?
Let us know please. Lots of experience and knowledge here.
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Stay stressed. Never relax. Never sleep. Ever.
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Gator
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Re: New member have a queston
« Reply #7 on: Oct 28th, 2004, 10:48pm » |
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First, ClusterSpouse and Ann welcome to the website. I am glad you have found us. The info and support I have found here have literally saved my life.
As has been said, Imitrex rebounds have been discussed frequently around here. I think the general consensus is it can lengthen a cycle and/or increase the number of hits
BUT
When my neuro put me on Topamax my headaches got worse. The higher the dosage, the more frequent and more severe the headaches got. Also started having horrible nightmares from which I would wake up in the throes of an attack. It also made me dumber than a bag of hammers. My wife took my car keys from me because I was unsafe behind the wheel.
In short, Topamax has worked wonders for others here, but for me - it sucked. I would not take it again.
Gator
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BlueMeanie
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Re: New member have a queston
« Reply #8 on: Oct 28th, 2004, 11:23pm » |
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Welcome to Clusterville !!
Sorry to hear your husband is back in cycle. Glad you found the site. Lots of good info and some laughs for when you get down and out too.
By using Imitrex, you will end up with a few more CH's the more often you use it. It seams that it becomes a little less effective too. I try to mix it up and us 02 as much as possible when at home and save the trex for work and when leaving the house. Of course 02 doesn't always work but it will save your hubby from using so much trex.
I personally would much prefer more CH's at shorter intervals being knocked down with Trex than suffer a KIP9-10 without Trex.
Anyway, check out the 02 info. It is worth the investment.
Good luck and welcome aboard.
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Clusterspouse
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Re: New member have a queston
« Reply #9 on: Oct 29th, 2004, 8:55am » |
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First off I would like to Thank everyone for responding and answering my questions, I am sure you have answered them over and over. I have gained alot of insight from your answers, other posts and the website in general, I also checked out OUCH and found that very helpful and have printed off alot for our doctor. We have a doctors appointment Monday with my husbands new doctor, he's an Internal Medicine doctor but his partner is a Neuroligist who we will be seeing also. Makes it alot easier no referels and no wierd looks like you have what?? Our insurance is paying for the Imetrex and O2 which is a godsend, 8 shots for 579.00 is outrageous. Our doctor tried to put the script all in one for 24 boxes for a month but the insurance company insists that I pick up 4 boxes every 4 days. So paying the $20.00 every 4 days is well worth it. Since the last time I posted it seems the CH's have gotten into a daily timing again although he has been having more than normal. They start around 2 in the afternoon and he has one every 3 to 4 hours the last one seems to be at 4am. It seems we are able to abort most with the O2 and hot towels. During the day when I am at work and he is home alone is the worse, he has a hard time aborting them by himself, and by being alone I think fear factor works its way in. We had him in the ER 2 times last week and once the week before. On top of the CH's he suffers from High Blood Pressure, so any of the medicine out there for CH's plays havoc with his BP. His BP has been 160/110 almost ever day now for two weeks. His dr has done EKGs and is working on getting the pressure down but doesnt want to take him off the meds, he's explanation was just the pain of the CH's does the same to his BP so why torture the guy and take him off. (hard part is getting him to only take two shots in a 24 hr period). I am hoping he will get better at aborting the attacks during the day and not taking the shots since the late night attacks are way worse. Also I noticed when I am home I can tell alot of times 10 to 15 minutes before he knows one is coming by looking at him. The white of his left eye turns blood shot and the lid swells, also the pupil in the eye shrinks down to pin size, which is quite noticable when looking at him, as soon as I see this its off to the O2 tank and this usually stops it. Once again thank you all its great to talk with people who understand and listen. Most of our family have know knowledge and either are afraid to listen or just can't phathom that this is a real thing that is happening. My husband hasnt been on the site which I told him about, he was having a hard time concentrating and reading but that seems to be passing so I am sure he will be here soon. I also had my two older sons read the posts and hints on the side, their 18 and 14, both said they understand alot more than they did and have been a huge help with our 7 year old son who in the beginning was having a difficult time dealing with this. Well I'll sign off before I end up writing a book Thanks so much!!!!
CS
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thebbz
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Re: New member have a queston
« Reply #10 on: Nov 3rd, 2004, 11:02pm » |
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Welcome,
Ditto what Gator said at least for me the topomax made my head crawl.
BB
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