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...if ya want a direct tube to breathe through, any mask will do by just pulling tube connector off mask...cutting off if ya hafto. i couldn't do because it was uncomfortable and the pressure of the mask, CRAMMED into my face, actually helped. just be sure to plug/squeeze nose so you are getting pure O2 only...which is critical.... ...btw...if you got a typical nonrebreather be sure to tape shut those dang holes on the side...a slight lift off the chin to exhale worked best for me... j

CH.com is experiencing supply chain issues for its products. Are there alternatives for a direct mouthpiece that you or anyone could recommend? I have the standard mask that came with my units but hear it isn’t ideal for CH.

Welcom to the CH club, we are all a bit mad in here, but we have lots of knowledge, so ask questions, tell us your experiences

Poke around, read up and ask questions. You will be amazed at how many people are willing to help and share experiences. Key in on Oxygen and Vitamin D, they are the most recommended treatments to get started with.

...hola!...welcome... jonathan

Thank you everyone for the insight. I’ve read it all and am very grateful. Oxygen delivery is tomorrow, cluster equipment and all. Here in New England, my access to medical resources is fortunate at times. My neurologist confirmed I should only be on the verapamil during and while leaving the cycle. Direction is to start at 40mg and raise to 80mg if side effects aren’t bad; they didn’t mention doses beyond 80mg. I didn’t realize it reaches 1g+ for some people! Everyone is different so there’s no right answer, but I’m curious if you feel the drawbacks of verapamil are curbed at lower doses. No experience or knowledge about it yet. thanks again all!

yes, get oxygen. yes, consider busting preventively during the year. definitely start on the D3 regimen, which will be as effective preventively (for future cycles) as the verap. just a few more words on the verapamil. first, it takes some weeks to get into your system, so if you can realistically anticipate a one-to-three-week cycle, there would seem to be no point, or very little point. prednisone is sometimes used as a "bridge" to quell the pain while the verap is taking effect. there are things to be said against prednisone, and using it more than once a year is strongly discouraged, but it could be considered, i would think, for cycles so short. except, as you say, why risk poking the bear. (also, verap dosage has to start pretty low, to make sure there are no issues, and then it should be monitored as it is increased. in such a very short cycle, it is very unlikely to help, and you don't want to be on it year-round in your current situation.)

as is said here -- welcome, and we're sorry you have to be here. you might want to start here for a general overview of some treatment things: Basic non-busting information - ClusterBuster Files - ClusterBusters The great people here will help you any way they can.

Hello everyone, I’m new here and just joined this amazing community after hearing how supportive and knowledgeable it is. I’m still learning my way around the forum, but I wanted to introduce myself and say hi. I’m here to connect, share experiences, and learn more about managing cluster headaches effectively. Any tips, personal stories, or advice you can share would be greatly appreciated. Looking forward to getting to know you all and contributing where I can. Thanks,

Agreeing with both above! I was put on Verapamil at the start of my cluster journey. Wish I never started it to be honest. I have had no issues with my heart or anything like that but it did mess with the feeling in my legs when I was up at around 1040 mg a day. I have slowly tried to take myself off of the stuff and am now down to 120 one time a day. They say that that does nothing for clusters but I can tell for sure that s not true. I have cut that last dose out and was clean of all verap for about 5 days before I started getting my ass handed to me in a big way and jumped back on it. And because I love to torcher myself I have done this a few times with the same results. When I was new to the cluster game I did not know anything about them at all and like everyone else dealt with it thinking it was a toothache or something. I would get hit ere and there but nothing consistent. I started the Verapamil and an now chronic. I am not saying that is what made me chronic (my wife may say different) but it has been no lookin back since. Oxygen will be your best friend! 5hr drinks are your side hustle go to that you will tend to keep in your pocket at all times, Vitamin D helps a bunch of people and I feel does bring the pain down a few notches on that kip scale. Busting is not for everyone but definitely read up on it and not in the micro feel good about my life types, you need the cluster type who are trying to achieve a pain free life. Triptans are handy to have around for when you get stuck in a bad place and need that quick relief, and injection is the way to go for that. Just my 2 cents, I am not a doctor, this is just my experience. We are all different and you will need to tweak it as you go but the people on this site are pro's.

....OXYGEN, an opti-mask nonrebreather mask or direct tube, (other sourced demand valves the Cadillac worth investigating) from clusterheadaches.com, a regulator of 15-25 lpm (Amazon), energy drink or strong caffeine drink (5-hr energy my fav, no sugar, more caffeine/taurine than most), hit that O2 the first sign of a hit, try various breathing techniques like hyperventilation, breathe and hold, slow breathing....or a combination.... ...and please do listen to Shaun...he knows whereof he speaks....suma and other triptans should only be used as abort of last resort. the near instant relief is so enticing it can lead down a rabbit hole of hit/abort/rebound....rinse, repeat and ride the agony train... best jon

Hi @Subreally good that you have a neuro that understands CH, that's the first step and normal that's one of the hardest, as for verapamil really works well for chronic and episodic,but not for everyone, biggest problem with varap is the dosage needed to be affective for CH, with it being a blood pressure med it can cause serious damage ie heart block, really need to get on O2 life changer for most CH, as for samatriptain injections, just be careful can lead you down a horrible dark rabbit hole that really hard to get out of, have a look at the D3 vit ragime, again works for loads of us and your shadows may well respond to ginger,

New episode started 2 weeks ago. Worst one since my onset in 2022. Attacks are painful and becoming more frequent. Yesterday was 4 in one day, with #2 being the worst of all time. Persistent shadow ever since. My neurologist - who is on ClusterBuster’s recommended list - wants to start me on Verapamil and home Oxygen. My only treatment is sumatriptan nasal spray, but after yesterday I’m ready for injections. Very open to trying O2. I’m wary of Verapamil as my episodes are infrequent and I’m concerned about feeding into some kind of rebound cycle. I’ll discuss this with my neurologist, but wondering if anyone has first-hand experience to share regarding Verapamil usage for infrequent (1-3wk per yr) episodes. I don’t want to poke the bear that hibernates almost all year… thank you for any insight, all.

https://youtu.be/A8bA8sUG2Ig Just a little YouTube link to share with others about a few doctors discussing how they go about treating cluster patients. Not sure it was supposed to be shared but it may help someone or give another option that was not tried yet.

I think most people who have come here from the UK have been prescribed O2 and received it. Maybe something has changed??? Are you doing the D3 regimen? D3 regimen - ClusterBuster Files - ClusterBusters You know about splitting triptan injections? Getting partial doses from sumatriptan injectors (Imitrex, Imigran, etc.) - ClusterBuster Files - ClusterBusters DMT? DMT experiences and advice - Theory & Implementation - ClusterBusters I haven't checked on OUCH-UK for a while, but it has in the past been a very valuable source of advice and support. OUCH(UK) - The Cluster Headache Charity | Support for Sufferers & their Families

A discussion here: Migraine and cluster headaches: Treatments and respect are hard to come by.

Stories like this give hope to those of us who are in the middle of an episode. So glad you found your sweet spot and wish you a life fulfilled and happy and pain free

It's far too early to say much due to the aggressive nature of CH but over the past 3 days I have treated each attack with only red bull and ice packs and for the most part it seems to have a significant effect in reducing intensity and duration. I avoid my triptan shots as I'm mid bust atm and living in a 3rd world country called UK I don't have access to o2. Basically if it wasn't for this group of ppl on CB.org I'm on my own... Will update again in due course. I appreciate though it's very much horses for courses and what may help one person may not help the other. Im currently 5 weeks into my episode and fed up doesn't even come close to describe it. Every single time I lapse into a sleep I get a massive attack. Im functioning on max 2 hours a day of sleep made up on 30 minute cat naps. I never knew the human body can function on such little sleep although I barely describe myself as functioning I'm more just trying to survive

Ive been begging the pathetic nhs for o2 and I can't get any. How did you manage it? I literally have no support except for occasional prescription for 2 nasal vials of that awful triptan. They simply don't care about me and forgotten me completely

I know this is an old post topic but I tried red bull twice this week and both times I felt the attack ease and even dissipate. I don't remember to take it as soon as the attack starts but nevertheless have had positive effects. I will post more updates as I just purchased a big box of these for emergencies and plan to continue using until it shows its not working or is working etc.. We are in it together so let's keep it together x

Sounds like there may be some early signs of change, which is promising. That link between your migraines and clusters is really interesting, and it makes sense to try targeting the migraines first. I came across this article that outlines how Botox is typically used for migraines, including where the injections go, it might be useful to skim http://injectco.com/services/botox-for-migraines-arlington-tx/ Hope things keep moving in the right direction.

I am glad it was not a blood clot! I am sorry I did not respondf or so long, still getting used to the notifications on this forum. Prednisone is such a double-edged sword.....!