[Riseed]

(not the person to whom you were replying)

Hello, fellow clusterhead! May I ask how you obtained 100% O2? Insurance won't cover it because I have no respiratory issues, and medical supply companies won't talk to me because of insurance denial, even with valid rx. In the meantime, I've been using the canned O2 from sports stores, which is expensive and seems unnecessarily wasteful.

[zoky]

In my case, insurance wouldn’t cover O2 either (actually, I didn’t bother trying), but I had no problem paying cash for a tank with a doctor’s prescription. The up front cost was kinda high, but refills are fairly cheap.

Don’t look for a medical supply place. Look for a bulk gas distributor that sells medical oxygen. For one thing, at the rate you need oxygen for clusters, the small tanks that most medical supply places carry will only last about 15-20 minutes, so maybe enough for one or two attacks. Realistically you want something bigger like a J tank. You also need to get a non-rebreather mask with an inflator bag. A regular mask won’t cut it unfortunately. Search up the ClusterO2 kit for what you need.

If you can’t get medical oxygen, you should be fine with welding oxygen in a pinch. I understand a lot of clusterheads use that without issues. It is exactly the same as medical oxygen, the only difference is that for medical oxygen the tank is purged before each fill to ensure no contamination (although this is very unlikely with welding oxygen anyway, and you should be able to request they purge the tank before filling to be extra sure) and the chain of custody is certified for medical oxygen to ensure that it hasn’t been used for anything else before being delivered to the consumer.

Honestly don’t bother with canned O2. It is not 100% pure, which is an absolute necessity, and they don’t deliver nearly the quantity you need to knock out a cluster. If they help you, great I guess, but it’s probably in your head (so to speak). I took oral eletriptan for years for clusters, before finally realizing that the headache would go away after 45-60 minutes on their own regardless of whether I took the medication. Now I take injected sumatriptan when I’m caught without oxygen, which knocks them out in under five minutes. The relief is nothing short of magical.

[Teagan42]

CGRP blockers are the true magic. 6 years ago I had the worst cycle yet, wanted to end it. Found a neurologist who actually knew his shit and understands the pain, he got me injectable sumatriptan and emgality. 6 years of no attacks, stress has recently brought on a cycle so scheduled a nerve block to break it. If you suffer from clusters you need to talk to your doctor about getting on these injections, they saved my life.

[zoky]

Appreciate the recommendation, and CGRP blockers will be my next line of attack should my current regimen prove insufficient. For now, my headaches seem to be pretty well controlled by verapamil as a preventative and oxygen/sumatriptan as an abortive, so I’m cautiously optimistic that I don’t need to introduce a new treatment, especially given that clusters supposedly decrease both in frequency and intensity as you age, or so I’ve heard.

It’s funny, but when I haven’t gotten a headache for a while I almost miss them, as if it were proof (to myself, if nobody else) that I wasn’t really just faking this and yes, it really is more painful than any non-sufferer can possibly imagine. But then I get even a slight shadow, as I did just the other day, and I immediately recall how miserable and awful they are and don’t know what the hell I was ever thinking.

Glad you have found something that works well for you to control the beast. Here’s to another year cluster-free; after that, who knows…

[Riseed]

> Honestly don’t bother with canned O2. It is not 100% pure, which is an absolute necessity, and they don’t deliver nearly the quantity you need to knock out a cluster

They definitely don't knock out the cluster, but do seem to slightly lessen the pain in minutes. I wish triptans helped, but no luck yet with any we've tried.

Thanks for the help with O2 :)