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I find putting a frozen bag of peas on my neck while using the O2 helps. Sometimes I'll put a second bag of peas on my head. I'm sure the whole scene looks rather chic to the untrained observer

Greetings from down South, sorry to hear about the situation with your husband. I fully agree with others that the D3 regimen is helpful, also melatonin often helps reduce nighttime attacks. I also agree that it's better to hit the oxygen earlier rather than later in the attack. Regarding the anxiety and driving everyone crazy and not wanting to work, I've been through that too. All I can say is that the sooner he can move to a place of acceptance, the better. There is currently no "cure," and hating the cycle and resisting the attacks makes it all worse. For me, when a cycle starts, I do go through my initial phase of denial ("Oh, maybe it's not a cycle, maybe just a random attack, it can happen..." "Oh it's just the air pressure, not an active cycle"), but once it becomes clear that it is indeed an active episode, I really try to accept it and tell myself I'll get through it. When an attack starts, as calmly as possible, I stop what I'm doing and go to the oxygen, assuming I'm home. While I'm on the oxygen, I try as hard as possible to clear my mind, almost as if I'm trying to meditate--not panicking is key. If I go out, I'm either prepared to abort whatever I'm doing and go immediately back home in a taxi, or I do take meds to lessen the severity if an attack does come. Although it's not without side effects, dihydroergotamine seems to work reasonably well for me in that respect, but I try not to use it more than 2-3 days per week. The other one I use isn't available in the US, unfortunately. I'm not a triptan fan, personally, but many people have good luck with them. I also do the MM busting protocol, which usually works to break the cycle, although not 100% of the time. He'll have to experiment and see what works for him, but acceptance and calm perseverance are key. Good luck!

.....yee-haw and sounds familiar....play with the flow to dial in. M-60 tanks doubled that abort #/tank.... and reduced visits to the O2 shop. though the E's are quite portable and easy to roll around in a cart. used to love me some the smell of a new mask....associated it with the GOOD that was happening...

Nice going!!! If your mask has open holes in it (a circle of small holes, typically on one side, whereas the other side has typically has the same holes but with a gasket behind them), be sure to block them with your thumb as you inhale, or cover them with tape. They let room air in as you inhale, and that reduces the effectiveness of the O2.

I agree about the tape bit. I luckily just found a nonrebreather mask with the holes on one side already sealed and a gasket on the other--has been more effective than the the both-side gasket one I was using before. Nonrebreather masks are only $3.00 here, and I'm renting an enormous H tank for $20 per month, $40 O2 refills, delivered by a nice guy to my door. At that price, no fussing with insurance!

Nor can I, the band feels terrible. I luckily can tolerate simply holding the mask to my face, and I agree that inhaling through the mouth is way better with the bag--I inhale through the mouth and out the nose holding the nonrebreather mask on my face at 14 lpm, usually works within 10 minutes or so. I set an alarm to not go past 15 minutes, and only on rare occasion has it not worked, thankfully.

NR', if you put the word Nurtec into the search bar at the top right of any page, you'll see what people here have said about it. No one reported having the success that your doctor's other patient had, for sure. It's important to recognize that mostly you are likely to see disappointments reported here, since people who have success are not particularly likely to come here to report it, so you're not getting the full picture. (In that regard, it's frustrating that some Nurtec threads tail off without closure, since it's impossible to know whether the treatment succeeded or not.) It's my understanding that Nurtec is an abortive medication to stop individual attacks (migraine attacks, since as you say it isn't an approved CH treatment). Is that how your doctor prescribed it (take it to stop an attack), or are you supposed to take it regularly as a preventive? Aside from that patient whose cycle is reported to have ended, as an abortive Nurtec seems to be not nearly as effective oxygen or triptans. My goodness, it is expensive! When you say "without insurance," if that means you have no insurance, that's one thing, but if you do have insurance but it won't cover it because it's not approved for CH, maybe you could try something like Emgality, which works in essentially the same way, on CGRP receptors, and is approved for CH. If you decide to go ahead with this purchase, you can get it for a little less using a coupon from at goodrx.com. Can we assume that you are using all the standard CH treatments -- oxygen, D3 regimen, etc?

*Update* I received my non rebreather mask in the mail and used it today at 10lpm and aborted an attack in about 12-15 minutes. Went through 1/4 of an E tank but small price to pay to abort one!!!

Generally successful at stopping the pain for a while. Generally not successful at breaking a cycle, but sometimes it does. The dosage recommended by a leading expert is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks.

Yes, the usual amazing post from spiny. Like her, I have to ask -- Only Emgality? That would be very unsatisfactory. The Emgality might work, but there are strategies to get you out of pain now. And regarding that Emgality prescription, it is for 300mg? That's what is needed for CH. Even with a migraine diagnosis, you should have been prescribed Verapamil and some kind of triptan (perhaps the injectable form, Imitrex, but maybe tablets or a nasal spray). Did none of that help you? spiny has covered it all so well that there's not a lot to add, but this post might have something useful for you to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I wish I was getting relief. It was only one infusion and the one study of 4 patients that had infusions was 15-17 infusions before they started nasal... I spent the whole day calling compounding pharmacy’s and drs offices to no success. I’m pretty screwed. The longer I go without the ketamine at home the worse my attacks are getting. I’m fecked at the moment.

Rocking back and forth right now, wishing I could just pull my eye ball out with pliers, and woke one of my kids up because the pain is so bad. But saw an actual headache specialist this morning after 2 decades of seeing gp's and neurologists. I've always been told it is migraine. My GP when she finally referred me to the headache clinic even apologized and said she "had migraine blinders on because" I am a woman and she doesn't see women with headaches that aren't migraine or stress. So headache specialist today (1st appointment) gave me the diagnosis "atypical cluster" and prescribed emgality (sp?) I would be happy that this means I could be closer to some sort of solution or even reduction, and should be happy because I've never heard of clusterbusters before tonight and it's sort of a miracle to discover that I am not so alone, but the pain is just so bad right now that nothing matters. Why? Why this? Why us? How can any thing hurt so much? How can I just pull my eye out? It's a f*cking nightmare that just never ends. I'm sorry... I should probably wait until I feel better to write an introduction post. But I feel lucky to have found you all and I also feel so angry. I feel so angry at myself for googling symptoms so often, thinking that cluster fit better than migraine, and then not advocating for myself better. Not searching more, not finding this website, etc. because, "what do I know, I'm not a Dr. and they keep telling me I'm wrong." Oh my God they pain is so so brutal.