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Showing content with the highest reputation on 12/15/2023 in all areas

  1. Yes, that's long (which is fine), and I just scanned it and jumped at a few things. 1. You never want to be using that much Imitrex. It is virtually certain to make attacks worse and extend your cycle. Do this!!! https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2. You must get oxygen!! It is the lifesaver, eliminating or significantly reducing the need for triptans. Insist with your doctor and if that doesn't work, use welding oxygen (all discussed extensively in that file I linked you to above, and the file about welding O2 in the CB Files section). 3. Your verapamil dosage is still quite low. It has to be ramped up slowly to watch out for effects on the heart. But the vitamin D3 regimen is much, much better for you than verapamil. You should just start it now, and you won't need any verapamil next time. Also linked to in my message above. If you take the D3 regimen year-round, it will be good for you and also might even prevent cycles from starting. (Also -- and I hope this is moot the next time it matters, you want immediate release verap, not extended release. I don't know why but it just works better.) (Some people get into the 900s and even over 1000 in terms of verapamil mgs/day. Nobody likes the side effects of that.) 4. it would be nice if Emgality really worked for you. Results are decidedly mixed. 5. You might read up more on busting, if it's something you would consider doing. Yes, it is astonishing how few neuros bother to do even this. You got lucky in the short run, but dosing yourself with Trex is not a workable long-term strategy. Your doc probably avoided oxygen because he has no patients who use high-flow O2, and he probably doesn't even know how to write a prescription for it. You can help him with those things from ther info here. The standard prescription reads something like "Oxygen therapy for cluster headache: 15-20 minutes at 12-15 liters per minute with non-rebreather mask." There's plenty of research on the effects of triptan overuse. A 6mg injector makes overuse almost a given. There are injectors with lower mgs (Zembrance, for example, has 3 mg), but the clinical trials for CH were done with 6, and so prescribing anything else is "off label."
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  2. SAVE THE DATE for Clusterbusters 2nd U.K./European Conference May 31st - June 2nd, 2024. More info coming soon! Contact ainslie@clusterbusters.org with any questions. Please consider supporting this & other programs with a one time or recurring donation. https://clusterbusters.org/donate/
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  3. The last CB survey I tried to take told me to take a hike because I don't have the diagnosis. I guess my brain tumor chills out when I use L M and D. :p
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