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Thanks for the replies! I feel more migraine type headaches than actual clusters. I’m worried the second shot will throw me for a loop. I had pretty bad side affects to the vaccine yesterday. We shall see kat

This is the full findings, 150+ pages in PDF available for download. Respectfully, it appears that CB’s primary interest is in busting and psychoactive use, and therefore , I don’t post all the info and research that I have on Dopamine Agonists, Hypothalamic activity, pituitary, Norepinephrine, just to a name a small out of the vast few research topics. Honestly, there is a plethora of research (mind blown). That stated, through the beauty of something called a Creative Commons license I located the full report and findings from the International Headache Congress and EHF Joint Congress 2021, courtesy of the venerable Journal of Headache and Pain 2021. Im sorry it’s not about busting but figure it may help someone. There is fascinating research and findings in there, of/related to the latest neuroimaging and review of neuroscience, migraine, among a treasure trove of things. https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01293-9.pdf

Guete Tag ELR, Clusterheadaches.com lists 27 CHers in Switzerland at the following link. http://www.clusterheadaches.com/states.shtml The Teutonic mind set among Swiss is to obey all laws. Accordingly, as you've likely found, Swiss are reluctant to admit busting. I do have a dear friend and fellow CHer in Switzerland who has been CH pain free since 2011 taking the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3. You can download a pdf copy of this vitamin D3 treatment protocol at the following link. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Take care and Viel Glück Alles Gueti, V/R, Batch

Also chronic here and had both shots 1 and 2 with no ill effect on the clusters. Still got em every day like clockwork! No more no less.

I've used varapamil but the dosage needed gave me heart block so neuro put me on Topiramate seems to reduce intensity of attacks . But you do need them in your body 3 mouths before cycle starts

All spot on advice above from the top members on this board. I would put money on them knowing more about clusters then just about any doc you will find. I have taken Verapamil up over 900mg a day, taken triptan shots like they were going out of style, taken prednizone had a hip replacement and all kinds of other fun things. Busting Oxygen and the vitamin D3 have been just about the only thing that have kept me around. I am chronic and it is not as bad as you would think. I never have to sit and wonder when my next cycle will hit. Stock up on as many oxygen tanks as you can and hitting them as fast as you can are key to having it work. Your husband will need to play around with his breathing techniques to have it work best for him, as soon as he has it figured out it will all change and he will need to change it up a little, That is just the way clusters are for most. I will attach links to some oxygen supplies you will want to look into. I start my o2 flow rate out at 25lpm and bring it down as I go so maybe he needs a little more then the 15lpm regulator is giving him. I doubt the mask is equipped with a bag large enough to hold the amount of air he will need to abort the attack as it should. Depending on the tank size you have you will need one of 2 different regulator. Most like to use E tanks to keep with them at work, in the car and take with them when going out. Larger M and M60 tanks are good to keep at home is a place you can get to them fast. keep looking around on this site and ask questions, it has saved many of us a lot of time and energy, you are not alone. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

Just checking in to say Hi! Kimbers! His stubbornness may morph into stubbornly standing up and taking those pills! Especially if/when it comes down to take them = pain free and to NOT take them = Ch pain! It usually takes a short time to realize the benefit - perhaps two weeks? But then the hits become less painful and the ramp-up is slower allowing him to get on the O2 and abort it a lot easier!! It may not kill the cycle the first time he starts it, but it will most definitely help and many go on to have lasting relief with just the vitamins! Most continue the vitamins year round as it alone can make a person pain free and eliminate all cycles. I once PMed with a member over the D3 Regimen, who expressed angst over taking a fist full of pills. My question to him was: Would you prefer to endure the CH pain over taking a handful of pills? The answer was a resounding NO!!! He needs to look at it as a preventative just like his Pred is currently. But the D3 is all good for you vitamins that will help your body in the long run where Pred will wreck your hips and send you to the OR for new hips. With his O2: He needs to exhale with force and inhale deeply. He needs to find his own pace for each hit. Some sit and stare at the spot on the floor while rocking, others pace. Just do what works best for him and know that it might change in the future. The main thing is to get the CO2 out and the O2 in. Most will grab their caffeine on the way to the O2. He must do what we call: post breathing. That is an additional 5-10 minutes breathing normally, with his supply dialed back to accommodate normal breathing. Just relax and stay on it to prevent the hit coming right back. ATB!!!

Hi kimbers . So good that your supporting your husband . Listen to these guys on here they were sent from god as far as im concerned . Your husband really needs to stick with the o2 as its so good he just needs to get the right rhythm for the attack he is having but he will learn that the more he uses it . Look at chugging and energy drink down first b4 hitting the o2 it give the o2 a head start . Plus look at busting

@Kimbers I'm going to Reiterate Chf's O2 comment.....he needs to hit it as quick as possible after the first twinge of pain......over the years I've found it works best for me in a standing position.....while the ambu bag is filling exhale forcefully and then do a mini crunch to expell the residual air in the lungs.....then inhale the O2 deeply and hold it while the bags refills.....and repeat until abort. Many of us incorporate either energy drinks or shots that contain taurine and caffeine in conjunction with O2 therspy.....others use hot or cold coffee. Sleep deprivation is a terrible side effect of being in cycle for me.....for nocturnal hits he can try adding melatonin before bedtime and/or sleeping in a recliner helps some folks. DD

What a great job you are doing, Kimbers!! And now, with so many members of the ClusterBusters all-star team joining you as they have (and maybe more to come!), and what seems like a very solid medical team (although I'm puzzled about why verap wasn't started at the same time as the pred), your husband is getting plenty of support. I have little bits and pieces of possible additional info, but it's all in this file, so I'll let you look through it: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (I feel pretty sure that this is already clear to you, but just in case, the blue underlined things in Jeebs's posts are links to files, so just click on them. (I missed it the first couple of times, but then, I'm 100 years old.)) (Getting on O2 early in an attack is essential . . . and it is also true that sometimes first uses of O2 are not very effective for people with CH, but they become more effective quickly. In part, this seems to be some kind of natural phenomenon that affects some people more than others, and in part it's a matter of developing the most effective personalized breathing strategy and related practices, such as the caffeine/energy shots that have been mentioned.) As a supporter myself, I know what hell it can be to see someone you love suffering so severely. He's blessed to have you, and as others have said, the suffering is going to be very dramatically reduced by doing the core things he is already doing or starting to do, and perhaps adding some others, such as busting.

Hey Kat!! Good to hear from you! I had the shots in my 'off time' and had no issue. But you have no 'off time', so no can do. I have seen it stated both ways - it stopped or it started a cycle. And the shot can give you a headache too. Did you wind up with a cluster last night? Since you already had the bug, I would expect a stronger reaction to the shot. The second one in particular. I was down with a fever for 3 days after the second dose. Hopefully this does not throw you back into hades! How goes it today?

Why would you try and delete your account or your posts for that matter? I do not know about other members but I can say for myself that you sound like you have been to hell and back. Yes poverty sucks but look at how far you have come. The way you write is pretty conducive of a very sound, sane and obviously very intelligent individual (shoot I had to look up a bunch of the words you used). Why back away from a community of folks that understand pain? Maybe we do not know the magnitude of what you have gone through, then again I do not believe anyone on here needs to in order to try and lift you up, recognize your accomplishments and just be hear to listen? I have made an ass out of myself many times on here and so far I believe I've been forgiven (you did not make an ass of yourself). It is hard to not want to know your background as a private contractor (military I assume) but if that triggers issues for you then no big deal no one will go there. My mother was diagnosed with a shit ton of mental illnesses Schizophrenia, Bipolar-Manic Depressive disorder and many other things I can't remember. She spent her life in and out of the mental hospitals, the doctors in my opinion, never really had a clue what to do with her. She would tell me stories about being held down and injected in the bum with Haldol and all kinds of other juices (in the mental hospitals they call it being juiced). In the end she chose to take a walk on the freeway. You haven't done that even with the years of what you have gone through. I hope this message gets to you and am sorry you are having a hard time with your PC. I will look for an email on your account and email you this if it seems that you are still not able to view. Seems that you have made massive progress. Stick around for a while!