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Thank you for all this. Unfortunately the CH O2 kit is out of stock On the supplier — they know it’s for CH - albeit I don’t know that it means they’re experienced with supporting it - though I was given a few tanks along with the concentrators. I’ll get in touch to see how often I’m allowed to have extra(s) delivered. I had a feeling the concentrators were divisive; I’m a small person and found while testing that I didn’t out-inhale the 15L/m offered by simultaneous usage. (I’m supposed to combine both to hit the high flow target). Out of curiosity, what do you feel are the largest drawbacks of the concentrator, aside from “warm-up” time and flow rate? Won’t know until I’m hit with an attack, but my hope is concentrators sufficient. If it works, it works. Maybe it’s a little optimistic. The regulator I was given for the tanks is 15L/m. Again, I don’t think I can out- breathe that without serious hyperventilation. small correction on the verapamil — I start 80mg/day (40mg twice) and then bump to 160mg/day. thank you again for guidance!

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.

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!

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.

This is pretty accurate to my experience. How common are these [discussed]? I only ever heard shadows in reference to migraines, but I’m very new to CH literature. Mine can persist for many hours. Very low level pain. They haven’t preceded any actual CHs.

Drinking is fine when I’m outside of an episode. I can enjoy a ton of red wine, have a normal headache or hangover, and be fine. However, during an episode it’s a “nuclear level trigger” as @Bejeeber eloquently writes… basically guaranteeing my emerging CH will be a minimum 8/10, and stretching its duration way out. Sucks because CHs make me very nervous and caffeine amps me up. Although caffeine doesn’t help much.

I know this is thread is old but this is my #1 question — I always forget to ask my neurologist. She recommended this community so I searched for it here! I sometimes develop ‘phantom’ headaches that are dead on my CH spot. The pain is always very subtle, but it appears and disappears just as a CH does. I find mine are triggered by illness (eg Covid) and classic seasonal timing (which is when my real clusters appear). It always generates anxiety that I have an upcoming episode, but I don’t think that’s true for me. I’m curious if anyone else has noticed this! Perhaps I’ll repost in a new thread in case anyone has insight; I just joined and will search around some more.