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Thank you everyone, I promise to respond to all in the next 24 hrs. It’s just been a rough go and getting everything ready for house closing and moving. Had my first decent day in a while today. Then the hits started at 6:30. So I at least got my daily stuff done and didn’t get tortured like I have been. I’m taking a few day drug holiday from the ketamine in hopes of reducing my tolerance. I haven’t gone through such a dark period in some time and it has never been as tough on me in a year. Oddly I don’t feel depressed, I’m sure it has to do with the fact that I’m taking 18-24g of ketamine a month. I’m not walking around w self deprecating thoughts or I used to be kind of thoughts. Just life is a real torture and I’d be out of my misery if I died of natural causes. But today I haven’t had one thought like that. I credit you guys for that mostly. Thank you for all the support!

I've encountered several vendors that will sell a demand valve without a script. The BPR is much like the one I have, but one like this will work just as well. I think if you are not so set on a specific brand you can find a vendor willing to sell to you.

@kat_92yup I’ve tried it w different degrees of success. Batch has been amazing trying to help me. My CH doesn’t stop or get better until my D is @or above 150-180. Get cessation after 200. This is pretty high to maintain and keep PTH and Ca in normal ranges and I need frequent labs my insurance won’t cover or find a doc comfortable pushing the limits. I still take it and batch has contacted me to try a new D and see if it helps. There is a doc in FL that specializes in high dose D if I recall. Will find out more info today from @xxx.

@Freud I’m so sorry you’re going through this. Reading your post made me tear up, and is all too relatable. Have you ever tried the d3 regimen? I noticed you didn’t mention it. It might be worth a try? Please don’t give up. There’s not many of us chronics out there, but those of us that are need to stick together. I’m going through it myself. The covid vaccine made my clusters angry. You have all the support on this website, I can promise you that. Take care, stay strong, keep us posted. all the best Kat

Hi. While not that particular model, I got my demand valve from Divers Alert Network (DAN.org). Divers use them for emergencies. I am in the USA and no questions asked. Hope that helps and good luck.

....Brian, my admiration for you and what you go through, your support of this family, and your ability to come on here with personality is immense..... just not quite as immense as the frustration with my own inability to offer anything other than vibes, prayers, thoughts and pleas to the universe..... ....have always thought maintaining my sanity thru this whole ride has been my best achievement…clusterheads in general, we gotta be some strong freaking people. you got this, and we are here even if you just need someone to listen....

I so get this statement.. I am not chronic and pray I never become so, I have suffered a serious bout of depression from the "not knowing" when I will get hit as well as how many things I have had to stop doing when in cycle. Many times I have talked to my husband about not wanting to live like this or make him live like this. It is so easy to feel like a burden and in some degree at certain times we may be, however you seem to have a good grasp on the affection and love that your family has for you as well as the pain that would be inflicted on them if you left, my husband always tells me "don't leave me". I am located in the land of skittle farting unicorns (CA), and it is hard to get help unless you are compliant with many rules and regulations. Bottom line is that in the end there is always one moment worth living for. Maybe it will be a moment that you are not at a kip-10 and get to watch one more God given sunset, see a new baby be born into your family, hear your Mom or Dad laugh or just have a moment of brain peace. I wish I had more to offer other that being a friend but I don't . Hang in there!

I got nothin to add my friend but you know how to get a hold of me if you need anything. I hope like me your just in a temporary low point and you will bounce out of it soon. This shit is not really that fun and we all know how you feel. Answers are hard to come by but you know as well as anyone that you just gotta think out of the box sometimes cross your fingers and eat some crap that you think will help enough to get you through the day.

I have enclosed two sources of information for your GP or specialist. One is the latest pharmoclogic guide for CH (to sparse and already known). That’s is in PDF. This is a link to a PDF with Full Open Access-all 151 pages-from the most recent journal, well open access, 2018 11th European Headache Federation Congress Jointly with 31st Congress of The Italian Society for the Study of Headaches https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-017-0817-z.pdf You will make it through, one second at a time. My thoughts go out to you. I’m in the middle of it as well. I just have my own way of going about it that would upset people. Though, not as bad, I am in pain, but found ways to mange. 2 years ago I was shooting up 2 DHE, 1 Keterolac, and eating 5 Butabital/APAP/Cafeine/Codeine and I won’t list the prophylactic use. It got out of hand. It’s a process. One day at a time. I quit everything but Dopamax and a home derived NSAID cocktail. It’s a long story. Good luck. Gotta black out from pain. If you need any other medical information, journals, clinical trials (surprising amount exist), things of that nature, send me a DM or better email me. I gotta go. It’s getting time to pass out. Brandt2020_Article_PharmacotherapyForClusterHeada.pdf

@Freud Sorry to see you're goin thru hell Brian!! I know you've tried everything out there so won't offer advice but sending positive thoughts and good vibes brother! DD

I’m never good at this-at all. Anyway, it’s obvious that you are going through it. I don’t know your psych and don’t recommend blasting it. However, lamotorgine is a miracle drug for depression and that’s coming from a crackpot whose had his brain fried 60x by the shock docs. You have to titrate it to prevent Steven Johns, but at 100mg (low dose btw) I came out of a 25 year depression coma, I’m only 38. Lithium ER has some evidence in treating CH and it will help lability, most only need 900 of the ER, sweet spot is .8 For the attacks I get them. This is extremely controversial on here, but being a fellow brother in arms nut job, you are privy to neuroleptics. Get a hold of a dopamine agonists, a good one, like haloperidol and try that out. Another taboo option on here amitriptyline. Both will knock you out at least, the best choice possible. Most important both target receptors in the brain that have been under research for over 30 years for CH research. The first research that I see was on said drugs. I’ll skip the science. Will it work? No promises. In India, they are going mega hardcore and using Clozapine, which if you recall can fatally lower your white blood cell count. That said, if you check it every week, you should be fine. I don’t know if your are in the US, but it’s federal law that they do: they put you in a federal database. It’s more hardcore than Thorazine (the famous Thorazine Shuffle not sure if you had that pleasure in the looney bin). It will ensure you rest. Third option, antiemetics, some do work-Phenergan comes to find. Phenergan/promethazine actually is a neuroleptic from the 1940’s. Fourh Option: Keterolac. Another taboo to most. It’s just a potent NSAID that Robs Peter to Pay Paul. Fith Option: My Preferred, Prednisone taper. If that doesn’t do it, hats off to you. You earn the you are going through some serious shit award. I won’t get into how that works, but I have yet to see a case where it doesn’t calm down. Final Note: I’ve seen others (other forums pop on search engines) bring up CNS stimulants. Unless narcoleptic, in mild cognitive impairment, controversially used for chronic fatigue, and dependent on just who you ask ADHD, then Methylphenidate and Amphetamine Salts, even Straterra seems a dangerous idea. Without getting into it, it gets back to D2 (Dopamine). I took several of the controlled CNS for several reasons outside CCH and Chronic Migraine, all of my headaches improved to some degree by stopping. Most of that research as conducted in the late 90s mid 2000s. I’d go as far to say that it’s mostly in the backwaters of Neurology for treatment of headaches. Never-mind the potential for misuse, the trials were small, from what I can tell not well conducted, and it’s just a bad idea. Im actively pouring through every academic database in attempt to find you the latest abortive pharmacology guide for primary headache to take to your GP or headache doc if lucky. If you haven’t tried Baclofin and Tizanidine for prophylactic use, it’s worth considering. And for the record, I’m not for polypharmacy use or big Pharma; rather, just getting some mother f$&king relief.

After 4 days with the first shot, I can confirm it DID aggravate my clusters damn. Going through it right now. I’m pretty miserable. Wishing I hadn’t even gotten the vaccine. I had a feeling this was gonna happen. I’ll bust on Sunday. kat