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Title: What does anyone know about this combo of meds? Post by Roxy on Jan 22nd, 2003, 10:35pm Got in with a new neuro today...called him Monday morning....he saw me today. Hard to believe ;D. He's running a clinical trial on ch's, so at least he was very knowledgeable about the damn things. After the usual barrage of tests (love the sonogram junk in the hair!), he prescribed Verapamil 180mg and Cafergot, twice a day. Then, the pharmacist told me not to take the cafergot twice a day....said no more than 10 doses a week as it would cause rebound ha's. Has anyone ever had this happen? The really good thing is when I told him my GP was only giving me 6 imitex nasal sprays a month....he said, "that wouldn't last six days!" I eloquently replied...."yeah...no shit." :-X So he gave me imitex sprays, injections, etc...basically as many as I want. Also, gave me 02, but I think I'll stick to my welding supply. Told me to quit smoking and quit caffine (although there is 100mg in the cafergot...go figure). If anyone has any experience taking both of these, I'd really appreciate the input. Thanks, Tracey oh yeah...he also told me to get off my hormones....that's when my husband started arguing!!! LOL Talk about panicked.... |
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Title: Re: What does anyone know about this combo of meds Post by BobG on Jan 23rd, 2003, 5:20am I can't comment, from lack of experience, about the med combo but, It sounds like your pharmacist is knowledgeable about clusters. Even though he's not a doctor, maybe his name should be over on the OUCH site as a recommended source of help. |
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Title: Re: What does anyone know about this combo of meds Post by ave on Jan 23rd, 2003, 5:24am One thing, though, about the coffee is a bit of bs. He confuses it with the sunday morning geadache from the sudden drop in coffee intake on the weekend. Also, though it is undoubtedly good for you to stop smoking, it won't do anything for or against clusters! Check the archives if you don't believe me. Many of us smoke (a lot too) but many of us stopped and saw no improvement whatsoever. Many of us use the cigarette as a first line of defense when the cluster strikes. Not cigs with O2, of course... :o |
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Title: Re: What does anyone know about this combo of meds Post by Bob P on Jan 23rd, 2003, 9:12am Verap 360/day may do the trick. It's a little on the low side though. If it doesn't work in a week, ask about going up another 120mg every 3 or 4 days until it does. Goadsby says to go as high as 960mg a day or until side effects make you stop. Doc Robinson, in Vancouver, siad he had patients up to 1080mg/day. I've used cafergot for 30 years. The book says not more than 10/week. I've taken as many as 30/week for 5 or 6 weeks straight. I've gotten cold fingers and toes from lack of circulation but never had rebounds. |
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Title: Re: What does anyone know about this combo of meds Post by Roxy on Jan 23rd, 2003, 11:24am Thanks for the input. We talked about the low dosage of verap, he said we'll just see how it goes. I go back in two weeks, so if it hasn't helped, he will change it. Last night, for the first time ever, I started to get hit....it got to the point where I was holding my head...and then it just quit. Don't know if it was the medicine or just dumb luck, but I've never had one stop like that. He also said aspartame was a trigger, and wants me to lay off the diet cokes. I only drink one a day, and it never acts like a trigger, so to heck with that. No cigs, coffee, iced tea, diet cokes, alcohol.......I figured he was going to tell me no sex next....LOL. Nothing much left after that list...... |
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Title: Re: What does anyone know about this combo of meds Post by Bob P on Jan 23rd, 2003, 1:56pm That aspartame thingy is a bunch of wahooey! Ueli has given some good disertations on it. Alcohol is a definate trigger for me in a cluster, but that's it. BTW - I'm episodic so that's not 30 years straight on the cafergot. My longest cluster has been 15 weeks. I've also never used it as a preventative (2/day), I've always used it as an abortive, taken at the beginning of an attack. Pop a tab of cafergot, strap on the O2 mask and 15 minutes later I'm good to go. |
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Title: Re: What does anyone know about this combo of meds Post by Roxy on Jan 23rd, 2003, 3:45pm Thanks Bob, Don't think I like the idea of taking 2 cafergot a day from now on. Think I'll use them like you do.....take one and hit the 02 (they're cheaper than imitex, I like to save them to use when I'm not at home). I agree with the aspartame thing.....if I had any kind of trigger, it would have manifested itself by now. Thanks again, Tracey |
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Title: Re: What does anyone know about this combo of meds Post by Roxy on Jan 29th, 2003, 1:56pm I'm kinda scared to post this......afraid I might jinx myself. I know I'm on a low dose of verapamil....but, so far, it's doing the trick. In 8 days, I've only been hit twice....and 02 took care of them within 5 min... ;D ;D ;D ;D I'm not taking the cafergot.....didn't think it would make any difference. I'm so damn happy right now!!!!! Tracey |
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Title: Re: What does anyone know about this combo of meds Post by Tony_M on Jan 29th, 2003, 3:32pm My dad was prescribed Cafergot 40 years ago and I was 20 years ago. I didn't think they had that antique around any more. It never worked for me. I also thought they were more for migraines than CH's? |
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Title: Re: What does anyone know about this combo of meds Post by Mark C on Jan 29th, 2003, 7:07pm Hi Tracey, I am glad you are getting some relief, you are certainly due! I also agree on not taking anymore meds than required for relief. I have not taken Cafergot, but one of the first meds my neuro gave my some 10 or 12 years ago was Ergostat, which appears to be the same thing sans caffine. http://tinyurl.com/52oq I remember having great hopes for this med because I was so hungry for relief and someone finally knew what they were doing! I also received dosage warnings but as I remember it was because of possible cardiac problems. I also remember putting them nasty tasting pills under my tongue.......with no relief. PFDAN's Mark PS-Did you see the part about Ergotamine being a uterine stimulant? Hmmmmmmmm.......... |
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Title: Re: What does anyone know about this combo of meds Post by Roxy on Jan 30th, 2003, 1:03am Thanks for the links Mark!!! ;D Interesting that it said take cafergot on an as needed basis....wonder why the doc thought I needed it twice a day. Took one tonight cause we were going to a big party, and I knew I would have a few drinks. But, that was just me worrying about getting hit....usually alcohol doesnt' trigger me. I liked the warning about gangrene...that was lovely . :-/ The uterine stimulation will have hell with me.....uterus is long gone.....maybe it will change directions and stimulate my brain instead, it could sure use some help. ;D I read on some post (can't remember which) that verap takes 5-7 days to kick in. If that's the case....I don't know what the heck is going on with me (but don't care either....as long as they stay away!!!) Thanks....PFDAN's, Tracey |
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Title: Re: What does anyone know about this combo of meds Post by kim on Jan 30th, 2003, 10:33am Hey Roxy, It's been too long since I took either of the meds you mention for me to accurately say how they worked. I can tell you that there are a zillion meds that contain cafffeine. I wholly agree with Ave. Glad you are having success! Food and drink is a classic player in migraines with respect to it's affect on the headache. Docs still have a tendency to relate it to clusters. The only trigger I can pinpoint is alcohol. If a doc told me flat out to avoid caffeine during clusters, I would know right off that doc doesn't see to many clusterheads. As far as foods go, during clusters it's just best to eat minimal meals. Not because of the food trigger factor but because of the relaxation factor. After large intake of food your body slows down and goes into "rest" mode. THAT is the trigger. IMHO Continued success and PFDAN :) |
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Title: Re: What does anyone know about this combo of meds Post by Laurie on Feb 1st, 2003, 7:38am Roxy, Get a second opinion about going off the hormones. It sounds like your neurologist might be confusing migraine triggers with CH (sheesh, why do so many men get CH if it's female hormones?). I have used hormonal birth control and it does not affect the frequency or severity of my CH. Laurie |
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Title: Re: What does anyone know about this combo of meds Post by Roxy on Feb 1st, 2003, 10:42am Laurie, Don't worry.....like I said, I just smiled and nodded. No way in hell I'm going off hormones. Had to have a very young hysterectomy (my mom died of ovarian cancer). I agree....some male drs. are hilarious when it comes to females. You tell them you have ch's, and they want to know when your last period was.....wtf...... So far I haven't cut out anything he's said.....and, it hasn't made any difference!!!! ;D |
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Title: Re: What does anyone know about this combo of meds Post by ave on Feb 1st, 2003, 1:43pm Just caught that about the hormones (I am a bit slow sometimes). You could of course look into fytotherapy, which means eat natural foods to supply the needed oestrogen. Which means eating about a ton of baked beans or drink a tank of soy every two days.... Think of the smell!!!! |
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Title: Re: What does anyone know about this combo of meds Post by Roxy on Feb 1st, 2003, 1:50pm LMAO Ave.... Well....it just sounds a little less than appealing, but thanks for the insight!!! I do, like everyone, try to eat right, but I figure any good I do in that direction is negated by all the caffine and nicotine. ;D ;) Tracey :-* |
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