CaptChaos Posted August 9, 2022 Share Posted August 9, 2022 Hi Busters, I had the unfortunate event of running out of O2 last night during an attack. I had to use Imitrex as an abortive measure around 2am my time with success. When I got up this morning all was good until another bad CH hit me and I had to take another Imitrex shot around 7am. My new O2 tank won't be here until tomorrow, I'm not able to use Imitrex anymore and I have terrible shadows going on. What are your emergency go-tos in this situation? I have Monster energy drinks. Anything else? Thanks! CC Quote Link to comment Share on other sites More sharing options...
spiny Posted August 9, 2022 Share Posted August 9, 2022 Yep, Energy drinks! Or coffee. Have you had any yet? 4 Quote Link to comment Share on other sites More sharing options...
spiny Posted August 9, 2022 Share Posted August 9, 2022 Ginger!! Tea, candy, chews, etc. Ginger is great for shadows. 5 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 9, 2022 Share Posted August 9, 2022 Monster, redbull, 5hr drinks all can help and tend not to keep people awake when used for clusters. You can also try strong coffee at room temp, ginger tea, candy or chew fresh. feet in very hot water and ice pack on your head on the cluster side. hyperventilating like you have your oxygen tank on full blast. Vigorous exercise like pushups, running jump n jacks. Any one of the things listed can help but can also make it worse, only you know your system but try it all out and find something that will help out as much as you can. Best of luck to you 4 Quote Link to comment Share on other sites More sharing options...
CaptChaos Posted August 9, 2022 Author Share Posted August 9, 2022 2 minutes ago, spiny said: Yep, Energy drinks! Or coffee. Have you had any yet? I had coffee after my second shot this AM and that helped curb the shadows for a few hours. I've been avoiding caffeine since assuming I'll probably need it later. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 9, 2022 Share Posted August 9, 2022 Could also try real Frankincense oil drip on the tongue, that has helped me just as good as the energy drinks. 3 Quote Link to comment Share on other sites More sharing options...
CaptChaos Posted August 9, 2022 Author Share Posted August 9, 2022 I actually went to school with someone in the family that owns Ginger People. I'll have to give him a shout. 3 Quote Link to comment Share on other sites More sharing options...
spiny Posted August 9, 2022 Share Posted August 9, 2022 FunTimes gave you the 'full' list to work from. Caffeine and ginger are at the top for most of us I think. Just hit it at the first twinge. I bet you will be a Happy Guy when that O2 arrives tomorrow! As suggested, some of the tricks will work for you and some will make it worse. You have to sort that out yourself. Hang in there, Wednesday is coming!!! 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 9, 2022 Share Posted August 9, 2022 I'm not big on the taste of ginger but it works pretty well for shadows and to some degree I think it helps keep the cluster bunny at bay with higher doses (2,000 mg or so). I use this product on a daily basis, two 500mg am. and two 500mg pm. I eat a keto friendly yogurt prior to the am dose as they are a bit hard on the stomach. You should be able to pick this up at a local supplement shop or at least something comparable. 4 Quote Link to comment Share on other sites More sharing options...
CaptChaos Posted August 9, 2022 Author Share Posted August 9, 2022 Thank you everyone for the advice, I appreciate it. I was able to find some non-caffeinated ginger tea and I also have a jar of powdered ginger I can tinker with. Hopefully I get lucky with a night of remission. 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 10, 2022 Share Posted August 10, 2022 2 hours ago, CaptChaos said: Thank you everyone for the advice, I appreciate it. I was able to find some non-caffeinated ginger tea and I also have a jar of powdered ginger I can tinker with. Hopefully I get lucky with a night of remission. Sure pulling for ya. CH is no fun at all. I hope your oxygen arrives with a quickness! Stay strong! 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 10, 2022 Share Posted August 10, 2022 I'd suggest you look in this file under the heading "Treatments without O2 . . . " https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Some of the abortive strategies might help you if you need them. I would say that after caffeine/energy shots, the most effective are inhaling cold air from an air conditioning vent, or some variation of the hot water strategy (feet in it; maybe whole body in it . . . ). 7 hours ago, CaptChaos said: I'm not able to use Imitrex anymore I'm not sure what you mean by that. If you're out of it, that's one thing. But if you feel like you can't use more than two injections in a 24-hour period, maybe you could split an injection so you're using just 2 or 3 additional mg, not the whole 6mg. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 5 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted August 10, 2022 Share Posted August 10, 2022 Not really a lot to add as you have had the best advice possible, but I will add 1 more thing , if you have a car with air-con , when you feel the onset of an attack get your lips round 1 of the air vents in your car , turn the air-con on and get sucking, your next door neighbours will think your mad , but that's nothing new to us folk with CH . Good luck buddy hope the o2 arrives soon 4 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted August 10, 2022 Share Posted August 10, 2022 7 hours ago, Shaun brearley said: your next door neighbours will think your mad , but that's nothing new to us folk with CH 2 Quote Link to comment Share on other sites More sharing options...
xBoss Posted August 10, 2022 Share Posted August 10, 2022 Hot soaks in the tub work like a charm for me. 4 Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 10, 2022 Share Posted August 10, 2022 (edited) .....when caught in the woods a couple times without ANY aborts...and while contemplating how dumb i was for being unprepared... i hyperventilated to dizziness. am sure the fear adrenaline of what was gonna happen helped...but dang, it was near miraculously successful... ....note that Batch has recommended a pre hyperventilation head start on your way to the O2 tank. his remarkable descriptions of the biochemistry involved are fascinating.... Edited August 10, 2022 by jon019 3 Quote Link to comment Share on other sites More sharing options...
MattyChe Posted September 5, 2022 Share Posted September 5, 2022 Has anyone tried humming or load gargling to stimulate the vagus nerve? 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 5, 2022 Share Posted September 5, 2022 1 hour ago, MattyChe said: Has anyone tried humming or load gargling to stimulate the vagus nerve? No but I sure have done a bunch of cursing along with some unspecified sounds 3 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 5, 2022 Share Posted September 5, 2022 I wouldn't discount techniques for stimulating the vagus nerve as worthy experiments. I know Wim Hof claims that submersion (or showering) in cold water has a big vagus effect. I can't claim to know whether that is a legit scientific fact though. Then there's one gal on Tik Tok (which granted could really impact credibility!) who suggests placing an ice pack right on the middle of your chest as the instant/convenient/super direct way to get the same kind of vagus thing going on (in that case it was was presented in the context of relieving anxiety and insomnia). 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 5, 2022 Share Posted September 5, 2022 ...same feelings here as Jeebs....worth a try. have always wondered about our "active" vocalizations that seem above and beyond those experiencing extreme pain. thinking back patients here for one, as i am one. totally theorizing that it is an attempt to influence "some" bodily function that will relieve our pain. sometimes it's voluntary, and sometimes just feels necessary. could it be the vagus we are hunting? dunno ...never seemed to work for me tho studies have shown that vulgarities/profanities shouted in the midst of anxiety do have, if nothing else, at least psychological benefits. since it was mostly wasted energy/made things worse in my experience, i trained myself to remain calm and non vocal while hitting the O2 and concentrating on "breathe" only. before that carried a (soon soggy) pillow to scream into in deference to the neighbors... ...i do think it behooves anyone wishing to explore vagus nerve stimulation to try out the VNS device. 'tis specifically designed to do such. i occasionally see a positive report for CH patients....but it has not caught on so apparently only works for some (who wouldn't want to be one. only one way to find out)...tho i bet $$$ w/o insurance approval. 3 Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 6, 2022 Share Posted September 6, 2022 The VNS device is gammaCore. https://www.gammacore.com/ By itself in typical circumstances, it doesn't work as well as an optimized O2 system. It supposedly has some effect when used as a preventive. I think you have to have a prescription to get it. Previously, and maybe still today, the first month was free but then $598/month after that, in the US. A 2021 evaluation within the UK National Health Service (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8611122/#:~:text=gammaCore reduces the frequency and,in the first 3 months.) "recommends routine adoption of gammaCore into the UK national health service," but presents these "key points for decision makers": gammaCore reduces the frequency and severity of cluster headaches but does not work for everyone. There is currently no evidence of a sustained long-term benefit. Treatment with gammaCore should therefore be stopped if patients do not experience any reduction in symptoms in the first 3 months. gammaCore was used alongside standard treatment, so decision makers should be aware that the possible benefits achieved with gammaCore are as a result of the addition of gammaCore to current standard treatment. 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 6, 2022 Share Posted September 6, 2022 I seriously wasent trying to down play or make fun of vagus nerve stimulation. I was just being me. I've tried the cfaly and I like the distraction. It hurts a bit but nothing like an attack...then again it's been none other than a very expensive distraction. I'll purchase the vagus nerve stimulating mechanism but doubt it will do much more than my Sonicare toothbrush. Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 6, 2022 Share Posted September 6, 2022 51 minutes ago, BoscoPiko said: I seriously wasent trying to down play or make fun of vagus nerve stimulation. ....and not taken as such...i was riffing on your comments that are near universally true in clusterville. ....VNS works for some...worth a try 1 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted September 6, 2022 Share Posted September 6, 2022 9 hours ago, jon019 said: VNS works for some...worth a try True indeed. And now that I'm thinking of it, I don't think the VNS is available here and comes with some sort of subscription? I'll check it out but may pass on it since other efforts are working for now. I would like to try growing because it looks fun and I would love an extra back up but I can't buy here in CA from most of the places that I found seemingly good kits? Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted September 6, 2022 Share Posted September 6, 2022 15 hours ago, jon019 said: 16 hours ago, BoscoPiko said: I seriously wasn't trying to down play or make fun of vagus nerve stimulation. ....and not taken as such...i was riffing on your comments that are near universally true in clusterville. What Jon said - especially since @BoscoPiko could easily be deemed LLTELASN (least likely to ever leave a snide comment). 2 Quote Link to comment Share on other sites More sharing options...
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