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ClusterBusters

jules

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  1. I’ve had cluster headaches for over 30 years. I finally greatly reduced my headaches by going to a chiropractor to move a disc back into place that subluxates at C1/C2, which was great since I only had attacks a few times a month instead of 2-3 per day. Now, I’m suddenly getting more attacks. I’m off Sumatriptan cause it doesn’t work now, I’m using Rizatriptan but am not finding it effective and fear that I’m bringing on more headaches. I’m on Verapamil daily but it’s not working. No, oxygen doesn’t work for me. I’d be grateful for any other suggestions, this is getting rough.
  2. Thanks for your reply -- it's possible it is the Aurobindo which is definitely in pill form. For years, Imitrex in pill form worked very well for me, including many of the generic versions. I suspected this one wasn't working based on a limited use but the kaiser folks think it might be a) rebound headaches because i'm using Imitrex too much cause i'm getting more headaches; that I'm getting more headaches because I'm trying to lose weight so I cut back radically on sugar. if you change something in your diet, like cutting way back on sugar and add something in like artificial sweeteners that it can throw you off balance. I did a little research and it turns out my Torani sugar free syrup that I've been using rather freely contains Sucrolose and guess what, it's a trigger. So I'm using a bit of honey, stopping any artificial sweetener and I'm trying a relative of Imitrex. BTW, they also had me try Effexor which apparently works to prevent migraines though the primary purpose is to help people with anxiety and depression. It was a fiasco since even half a dose made me very dizzy and sleepy and I got to cluster attacks that day. So as of now, I'll back off the Aurobindo to be on the safe side, avoid artificial sweeteners and hope to get back to my normal thing of 2-3 cluster headaches per month rather than 1/day which has been hellish. I'll check the reference and thanks!
  3. I just picked up my prescription from Kaiser of Sumatriptan and find that it is not working. At all. Including an attack where I took medication very early. This generic is Aurobindo and I am not familiar with it. Anyone having trouble with this?
  4. Sorry it took me so long to respond. Am having a serious episode which as been tough since I've been spoiled by usually only getting one attack before I get it under control. Anyway, about your questions -- Your pattern seems unusual but all of us have some weird variations on triggers. Also, it is worrisome you're getting worse so to me that means keeping careful track in something like a journal (I do mine on computer) as to when you get them and any details that you can track later. I find if you don't keep track of them at the time, it is very hard to remember the important details because of the nature of the beast; also we tend to want to forget. Beyond being clear on the exact details of the triggers, pay attention to what helps and hurts when you are having an attack. And finally, really, really work on relaxing your body when you have an attack (it can be done, it just takes practice) and not getting sucked into being very negative. The normal response is to panic and assume this is forever. If you calm yourself, the attack will not be as bad and if you keep reminding yourself the attack will end and your episode will not last forever, it will help. Hope this helps.
  5. jules

    TEVA Generic Imitrex Problems?

    Thanks everyone! I've been having the worst time with the Beast. Pretty well ruined our 20th wedding anniversary, sort of just maintaining at the moment. I think based on what all of you are saying, I'll contact my Kaiser doc and see if they'll give me real Imitrex. I have to use the pill form though, the injection hits me like a brick, for some reason. I feel like I'll pass out. The pill form works rather well though.
  6. jules

    Common Threads of CH Sufferers

    I'm 49, have had Clusters since I was 20. Head injury as a kid that was significant. Very little drinking, no pot, no other drugs. 15 lbs overweight, I exercise regularly, eat a healthy diet, get lots of sleep (important for Clusters!). I've been told I have atypical Clusters. Nothing worked for me by Imitrex and I got headaches 2-3/day quite a few days of the week and they didn't leave. A few years ago, I went to a chiro who xrayed my neck and found a disk out of place. Most of the time, if my neck is 'in' I get very few headaches. I realize this is weird and unusual. I do get Clusters occasionally that seem to be stress or hormonal. I think we ought to do a poll if one hasn't been done, just to get an accurate read from as many people as possible.
  7. Has anyone polled our members for useful info for researchers and our own members like: 1) What are your triggers?; 2) What treatments/meds/practices have helped you?; 3) What treatments/meds/practices do not help you?; 4) How often do you get your headaches? I was on this forum some time ago, my clusters got better so I have been off but had a question and headaches so I'm back. I think information like this could be useful and would love to see it if we have it.
  8. Thank you Violinmaker and Bejeeber! I read the headline coming off a headache and thought oh Frig, as if things weren't bad enough...
  9. How are you doing? Did the seeds work? If you are still plagued by night time headaches, remember focus on relaxing your body; the more you tense the worse it gets. You can train yourself to do this. I hate waking up with a headache, it's the worst. If the seeds don't work, consider trying Imitrex. The real Imitrex, not generic. It stops my attacks cold if I get it in time. Also, if you notice you don't have the triggers others have here, consider going to a chiro and getting your neck x-rayed. It's rare, but for me, having a disc out in my neck is my trigger. If my neck is in, I get very few headaches. Anyway, wishing you the best, maybe the seeds worked?
  10. jules

    Another suicide

    I realize the conversation has veered down another road but I can't help but wonder if this suicide and others we hear of aren't suicides. You know that some of us bang our heads against the wall and do other crazy things when we're in pain, some of which is rather hazardous. Maybe he was trying to knock himself out and it went too far. It's tragic regardless of what happened but it reminded me that we should perhaps make more of a point of emphasizing to our members to stay calm during an attack because it keeps your headache from accelerating more and keeps you from doing life-ending stuff. Speaking from experience, since I used to panic and wound up in ERs and learned to calm down. Doesn't end the attack, of course, but it keeps it from getting worse and I haven't had any incidental injuries or episodes like others have.
  11. I just got switched over to Kaiser and they use a generic Imitrex by Keva. Just took it for the first time and not much help. It didn't have the nasty side effects of the Dr. Reddy generic but on the other hand, it was minimally helpful. 2 hours later the demon is gone and it wasn't as painful as it might have been but my heads not cleared out. This is at the 100 mg dose. Any one having good or bad experiences with this?
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