CH-Larry Posted July 11, 2016 Share Posted July 11, 2016 Hey guys! Im Larry. Im in pain, lol....i guess thats saying alot!... I have to try to laugh to keep from crying..... well....im 38, been having episodic clusters since i was about 12 or 13, as a kid... almost killed myself yesterday, almost overdosed on sumatriptan.... the O2 just seems to make it come back after an hour...... taking 360mg of verapamil daily help.....lol Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 12, 2016 Share Posted July 12, 2016 Do you have a good O2 setup: high flow rate, good quality mask? If so, are you staying on the O2 for 5-10 minutes after you've killed the attack? That tends to keep them from coming back. Unfortunately, use of triptans, and of course particularly overuse, has been shown to cause rebound headaches, make attacks more severe, and extend cycles (not to mention potentially killing you). If you're injecting, you NEED to know this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Strongly suggest starting the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ 360 is a relatively low dose of verapamil, if your doc says your heart can handle more, Tried melatonin at night (starting at 6-9 mg and working up)? Tried an energy shot (5-Hour Energy, etc.) at the first sign of an attack? Some people find that putting their feet in a bathtub with water as hot as they can stand helps abort. Quote Link to comment Share on other sites More sharing options...
CH-Larry Posted July 12, 2016 Author Share Posted July 12, 2016 Do you have a good O2 setup: high flow rate, good quality mask? If so, are you staying on the O2 for 5-10 minutes after you've killed the attack? That tends to keep them from coming back. Unfortunately, use of triptans, and of course particularly overuse, has been shown to cause rebound headaches, make attacks more severe, and extend cycles (not to mention potentially killing you). If you're injecting, you NEED to know this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Strongly suggest starting the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ 360 is a relatively low dose of verapamil, if your doc says your heart can handle more, Tried melatonin at night (starting at 6-9 mg and working up)? Tried an energy shot (5-Hour Energy, etc.) at the first sign of an attack? Some people find that putting their feet in a bathtub with water as hot as they can stand helps abort. yessir! tried ALL OF THOSE, EXCEPT putting my feet in a bathtub of hot water.....i will increase my verapamil to 480. done it before with docs approval. I have o2, 30 LPM.......2 cascaded H tanks.... tried the D3 regimen....didnt really work.... started out on 300 mcg of melatonin, and worked my way up to 10mg, and had to work it back down again energy drinks might HELP abort maybe 30 percent of mines..... Quote Link to comment Share on other sites More sharing options...
CH-Larry Posted July 12, 2016 Author Share Posted July 12, 2016 oh yeah...i have the optimask, i got from clusterheadaches,com i have to inhale while holding it, and exhale OUT of the mask......at a high flow rate.....i guess im doing it right....no matter which variation i use, or whatever mask i use, i get similar results. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 12, 2016 Share Posted July 12, 2016 Well, I'm kind out of of gas. At the risk of just being pushy, I would recommend trying the D3 again -- it works for so many people. I know that if you want to try it again, you can ask Batch for advice. He's the person who developed the D3 thing and has been watching over it with great attention over the years. He's pretty much convinced that he can get it to work for anyone. He's a great guy who is very responsive to requests for assistance--he really likes to help. If you want to give it another go, I'll be happy to PM you Batch's email address. The CH expert Peter Goadsby says that 960 mg/day is maximum dose for verap, but it's important to go up slowly and monitor the heart. You didn't say anything about splitting your trex injections (assuming they're injections), although maybe that's also covered under "tried all of those." Maybe busting is the route for you to go. I didn't mention that before only because you'd have to stop using the trex for 5 days before busting and during the time that you're busting, which could mean at least 15 days of no trex while still having attacks (of course, you might be among the lucky ones who can knock out a cycle with one dose, but you pretty much have to count on three). It didn't sound like you are really ready for that. Of course, there are plenty of other meds that work for some people: prednisone, lithium, gabapentin, topamax. Somehow I imagine that you might have tried some or all of them already. Wish I could be more helpful. I'm hoping someone else will be. Quote Link to comment Share on other sites More sharing options...
CH-Larry Posted July 12, 2016 Author Share Posted July 12, 2016 yeah, ive split the imitrex injections....been there, done that one too... so why do you have to stop using the trex for 5 days before you bust? ive had some successes with prednisone in the past, tried topomax and gabapantin.....nothing... never tried lithium. and yeah, i would like batches email addy...thanks.... Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 12, 2016 Share Posted July 12, 2016 Just sent you Batch's email address.. Someone once explained the 5-day detox from trex, but I'm not remembering well enough to recap it. It's been an article of faith here since the beginning, based on the experiences and knowledge of the busting pioneers. And folks that I have seen here who have tried busting without detoxing have not had good results. (On the other hand, verapamil was once considered a blocker of busting, but now it turns out it isn't, at least at relatively low levels.) Lithium has worked well for some folks. You have to get monitored pretty frequently, and I have read that the rebounds after stopping it can be pretty severe. I was just reading a new study of occipital nerve blocks in 110 people with CH that reports substantial reduction in attack frequency. I have to admit that most reports I've seen here and elsewhere about ONBs have been disappointing. Maybe they have a better method now. Not to be too discouraging, because an ONB might definitely be a reasonable thing for you to try, but in general it seems that medical studies of CH medications show better results than people get in the real world. Quote Link to comment Share on other sites More sharing options...
spiny Posted July 12, 2016 Share Posted July 12, 2016 Hi CH-Larry, I suggest that you read the Clusterbuster Files section of the board. A ton of great info there. Melatonin does not help me until I reach 20mg. If you are getting an hour PF from the O2, that is still better than a 10 minute return of the beast. O2 does not prevent the next hit - just kills the current one. If you get nocturnal hits, try sleeping in a recliner, partly reclined with your head above your heart. It helps many. And, if you get hit, you wake faster too. Don't nap. That will bring on a hit for many if not most of us. Grab that caffeine on your way to the O2. Chug it down fast and hit the O2. That seems to give the best results for a lot of us. Are you doing a post hit few minutes on your O2? Necessary. If you with to discuss busting, start a new thread in one of the closed boards - Share your Busting Stories or Theory and Implementation. Those boards are closed to the public. Keeps the bots away! Pred is used as a 'bridging' med. Just to help till a new med gets working. And sometimes to provide a break in a bad cycle. Long term use is not good for your body. ATB Quote Link to comment Share on other sites More sharing options...
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