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I have been quietly lurking on these forums for over 20 years now. I haven't had to post because I usually found the answers to everything I needed. My CH occur every 24 months for 2-4 weeks since 1997. It took many misdiagnoses, incorrect medications, MRI, IV anti-inflammatory drips and trips to emerg before someone finally mentioned Cluster Headache. I consider myself a veteran now - when the beast appears, I get my Imitrex, Verapamil, Oxygen and lorazapam meds handy, inform my employer and let my supportive family know I am fighting the beast again for awhile and it takes everything out of me. Every cycle brings me back here to reread breathing techniques, follow new studies and look for something new to try. I have not tried Vitamin M but that is next on my list to try to extend my remission period. So first THANK YOU SO MUCH for all of your valuable information and support. I have a useless doctor who has never done any research for me despite my long history of the disease. My questions: 1. I live in Canada and my pharmacist says the Imitrex injectable vials are "discontinued." I have only ever used Imitrex nasal spray but they leave me feeling dizzy and eventually stop working early in my cycle. I would like to use the injectable form next cycle- any suggestions for me to find this on my own? 2. I read that Zomig may be more effective - is this in a nasal spray or injectable as well? Should I try that next cycle if I can't get the injectable Imitrex? 3. Verapamil - first time I was prescribed it as a preventative I began taking it in July (2013- expected cycle) and had shadows. Verapamil worked to prevent the cycle and I stayed on it for 6 months to xmas. I weaned off Verapamil a few days before xmas and 2 days later the beast hit. The verapamil only delayed the cycle but it often feels like it won't let me get away with anything without taking me down first!!!! 4. I am into week 4 of my current cycle. The Vit D protocol and Verapamil together bring down the intensity and frequency of the hits. I have had a few PF nights. However, this morning I woke up from a dream ( as usual - most of my attacks come right out of REM sleep) at 5am to an intense HA that I first tried to hit with oxygen, then Immitrex....then gave up wimpering in the shower and sobbing myself to sleep. The lastest addition to my clusters is the Panic Attack which has me vomiting along with the beast. The lorazapem helps to relax me so I can focus on just breathing through the beast. Four hours later, I woke up feeling dizzy, weak, exhausted with no head ache. This usually signals the end of my cycle. So why when I see the effects of the verapamil and Vit D for a week or more do I still get whacked at least one good time before the beast quits? It's like he has to win every god damn time!!!!! Sorry for the rant. As you all will agree, no one really understands what I am going unless you have been there with me Looking forward to any thoughts, Amy
Greetings fellow clusterheads. Very grateful for websites and forums like these. Around the age of 12 I started getting the most brutal headaches I had ever endured. At the time we had no idea what they were. As most of you went through as well, I had all the tests, scans, sinus meds, the works. Eventually, on my own after the age of 18, I figured out what they were, and discovered that there was no cure lol. What a kick in the balls that was. Anyway, I'm now 35, in the middle of a cycle, after going 4 years since my last one. The older I get and the more I progress career-wise, the more pissed off I get at these headaches. I'm trying more things than I ever have before, and more consistently, in an effort to find something that works. In past cycles I would be so damn depressed that I would just wait until the next headache, at which time I would alternate between holding a scalding hot heating pad to my head, and taking hot showers for 3-4 hours until the pain began to subside. This time around, as soon as I got the first one, I went to see my doc, and informed all of my different clients (self-employed) that if I was to get a headache, I will be unable to function and work. For the first time ever I found something that worked as an abortive (so far, knock on wood). Imitrex injections. In the past I had taken tablets, but never the injections. A week and a half ago my doc put me on Prednisone hoping to knock the cycle out. 80mg the first day, then 60 for two days, then 40, 20, and 10. No go. As soon as I got to the last day of 10mg, I got a beast of a headache. As of yesterday, I'm now on Verapamil, started with 80mg yesterday, and 160mg today and for the next few days. Plus taking Magnesium supplements, still small though, only 250mg today. The new meds have fucked with my usual cycle, so I'm curious what everyone's thoughts are... In past cycles, I would get one incredibly bad headache in the morning every couple days. It would last 3-4 hours, then I would be sore the rest of the day, and then nothing the next day. The last few days have been as follows... Saturday early morning was the brutal headache following the Prednisone. I was headache free then until Monday early morning when I got one and used the imitrex injection for the first time. About 8 hours later when I woke up I had a milder version of one that I knocked out with a heating pad in a couple hours. That day (yesterday) I began the Verapamil. Today early morning I got another one, thought it seemed slightly weaker, and used the imitrex again to knock it out. Now this evening, earlier than usual, around 8, I got one that seemed even weaker than the one I got early this morning. It was still bad, like someone burrowing out my brain with a spoon, but not nearly as bad as the really bad ones. I used a heating pad, hot showers, and aspirin with codeine, and knocked it out in a couple hours. Today was the day I took 160mg of Varap. My question is... could the cycle be coming to an end already due to the Varap.? Sorry to sound anxious, these things are just a fucking living hell. I'm a musician, so I've basically had to hire subs to be 'on call' in case I get a headache. I anticipate another one a couple hours after falling asleep tonight, and then I will see how tomorrow plays out. I will be on 160mg of Varap. for the next few days. Would you advise me to jump up the dosage? Or see if this one works? And again to my question, can the weakening of headaches be a signal of the end of a cycle? In past cycles I do recall that was how it occurred, but it has varied every time, and I think honestly I try to block out the memories of these fucking things. Thanx for listening to my story! And my heart goes out to all of you sufferers.
Hello, I just joined. I am 36 weeks pregnant and have had "classic" migraines of most of my life. About 11-12 days ago I got my first cluster, and it's been every single night since then. These things make regular migraines look like "kid headaches". The pain is unbelievable. Always wakes me up from sleep, always occurs between 10 p.m. and 6 a.m. They peak within 15 minutes and are not usually fully gone for 2-3 hours, with the most painful part lasting around 30 mins. Everything about it fits the exact description of CH. including the location along the left side of my head, primarily behind the eye, around the jaw, temple etc. I have found one person on a pregnancy forum who had this develop around the same time in pregnancy as I have, and it went away when her baby was born. I hope to god that happens to me, but I'm very scared. Because I'm nearly full term, my Dr felt it was safe for me to try 4mg imitrex injections, of which i'm going to try for the first time tonight. (I've taken imitrex pills in the past for my "regular" migraines while not pregnant, and they always worked, but tonight will be my first time with the injections.) She also prescribed a 5 day course of steroids - dexamethasone - which does have some concerns in 1st trimester, but for this far along she feels it's completely safe. I'm of course very nervous, but going on 12 days in a row of a cluster headache every single night - well the pain, lack of sleep, and stress can't be good for the baby either. I have to give this a try. My question is, I know that generally both of these drugs have a history of being more of a "crutch" than a cure - but do either of them ever break the cycle? I really can't imagine going four more weeks like this. I am afraid with imitrex it will stop the cluster tonight, but since mine are daily - will I just get it again tomorrow? I'm not going to feel comfortable taking imitrex every single day, that's for sure. Same with the steroids - I know for most they don't, but does anyone ever report of steroids breaking a cycle?? I guess i'm just looking for some hope at this point. This is all coming from my OB - It's a very long wait to see a neurologist, and I need something to help me manage the pain and get my baby here safely sometime in the next four weeks. I will be seeing a neuro and getting an MRI whenever this super long wait to do so is up.