missing Posted December 24, 2018 Share Posted December 24, 2018 I'm wondering if any first hand users of zolmitriptan spray can comment on how fast it starts to work if your cluster attack is at maximum pain. Do you start to feel better in seconds? minutes? an hour? Second, How soon is the pain bearable after the spray is used? Thank you Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 24, 2018 Share Posted December 24, 2018 ...I've always had luck (speed, efficacy, no rebound, no side effects) with Zomig NS 5 MG as my LAST resort abort when OXYGEN, energy drinks, and, at one point, verapamil failed (preferentially to Imex inject)....but that won't help you because many folks react differently. there's only ONE way to find out...ya gotta try..... …..do read the instructions carefully.....and use sparingly...triptans CAN cause rebounds.... Any experience with OXYGEN? Best Jon Quote Link to comment Share on other sites More sharing options...
Freud Posted December 24, 2018 Share Posted December 24, 2018 I inquired about this with my headache doc and he told me to be careful when reading the study data on clusters and the nasal spray b/c they used double strength in the European studies. In the states it’s not approved. Quote Link to comment Share on other sites More sharing options...
Elliott Posted December 24, 2018 Share Posted December 24, 2018 (edited) Oral triptans were extremely uselss for me, so I was given Imitrex Nasal Spray. It worked great. Sometimes it would literally work in seconds, and it made no sense. But after a cycle or 2, something happened. It went from being 100% reliable to significantly less(maybe 70% of the time). Then I was given Imitrex INJECTIONS and THAT was heaven. Within under a minute, 99.9% of the time. Then, I went from having my completely predictable 1-per-day to up to 5 a day!!! In one cycle!!!l Maybe my 3rd or 4th cycle of Injection use. Do not put all your faith in triptans. If you're like me, I suggest you keep your body's limited Imitrex runs as a last resort. When a cycle starts, i immediately begin looking for LSD (which takes a week or so) and use as much Imitrex as needed until I find it. Edited December 24, 2018 by Elliott Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 24, 2018 Share Posted December 24, 2018 missing . . . To repeat Jon's question: Do you have oxygen?? 1 Quote Link to comment Share on other sites More sharing options...
mit12 Posted December 24, 2018 Share Posted December 24, 2018 Zomiz nasil spray worked great for me and real fast, but rebounds were insane. When my insurance was strong i used to go through 75 nasel sprays in 3 mounth plus what my doctor used to give me as samples. Now days my insurance will not pay for the spray which is actually a blessing in the long run. Busting, O2 and energy drinks and an occasional Zomig tab for me now. Quote Link to comment Share on other sites More sharing options...
missing Posted December 24, 2018 Author Share Posted December 24, 2018 Hi, thanks for all the thoughtful replies. It's my 30 year old son who I think might be having cluster headaches. It's hard to know if he is having cluster headaches because he is non-verbal autistic with very limited ability to communicate. As I have been told many times a lot of autistic people hit their head but when I see him hitting his head he looks to me like a man in pain rather than just annoyed, frustrated or "being autistic". Recently I persuaded one of the doctors to prescribe a trial of zolmitriptan spray for him to sort of help rule out cluster headache theory if the spray had no affect. So far there have been two occasions when he has had the zolmitriptan spray and he literally stopped hitting himself within seconds. It seemed so fast that my wife and I were both wondering if the spray could possibly have worked that fast. My son's episodes tend to start and stop very abruptly. That's why I'm asking if anyone else has this kind of instant relief. The reply from user Elliot who seemed to have had the same rapid response is encouraging although the part about the diminishing effectiveness not so much. I'm working on the oxygen treatment. I have an e tank of 100% medical oxygen, 15 lpm regulator and non-rebreather mask. The catch is that being severely autistic he does not welcome having the mask on very much. So far I have been able to get him to breathe with the mask on for about 20 seconds on one occasion although he was not having an attack at that time. We will keep practicing. I think if I can get him to breathe through the mask even once during an attack and the oxygen provides relief he will tolerate the mask after that. Thanks again for all your input. Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 24, 2018 Share Posted December 24, 2018 ...ok...you got a full plate there 'missing'....and there aint much that we admire more than supporters...CH or autism, doesn't matter...thank you, and I like how you've analyzed the situation! ...my experience with Zomig: typical 5-8 mins...occasionally 1 min. but it's mighty expensive (for me $15-30 per and that's with insurance) so ya really do wanna know it's actually working. I never used more than 2-3 per week, in high cycle only, possibly why I experienced no rebounds (and ea dose gave me 18 hrs "free" time)…. please excuse I know NOTHING about autism...so these are just thoughts : ….possibly the nasal spray is acting as a distraction or acting in another way besides CH abort. I'd consider a plain saline spray as a trial...maybe it's just the physical act? ….mask "phobia" is a definite thing for anybody...they are damned uncomfortable (hot, slimy feeling, claustrophobia inducing, etc)...I've been using over 30 yrs and I still feel like I'm being stifled.... at the same time I'm breathing! if he's willing you can get mouthpiece breathers...or just breath thru the supply tube....but you would have to somehow shut off nose breathing as you MUST have 100 % O2.... ….does he like energy drinks or other highly caffeinated drinks....unless there's an agitation problem it is quite an effective abort mechanism....anything over 100 mg caffeine and 1000 mg taurine (boosts the caffeine effect)….really cold works best for me... ….consider the vitamin D3 regimen....he's likely deficient (most of us are)...and it's good for far more than just CH... best jon Quote Link to comment Share on other sites More sharing options...
jon019 Posted December 24, 2018 Share Posted December 24, 2018 ...forgot to add....in my particular experience proper technique for Zomig NS administration was critical (carefully read and follow instructions as best you can)....improperly done and it was useless... Quote Link to comment Share on other sites More sharing options...
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