Hi all,

I just found out about this website through another website, "The Gear Page" a music related website.

I am in my 50's, and have been having cluster headaches since the early '90's. I also have a pituitary issue, and had most of it removed in '08. Reckon I have a damaged hypothalamus area in my brain. Scar tissue and optic nerve damage.

Over the last few years the cluster headaches have become more frequent and more intense...WAY more intense!

Sumatriptan does alleviate the pain, but at the risk of irregular heartbeat.

I've tried topizol (sp?) verapamil in the past and currently am being treated with zonisomide and prednisone. None work and the side effects are just too much for me.

I have also tried O2 for the first time, and in a few days inhaled a 4' tall tank of the stuff with no relief what so ever from it...Grrr

Hi! and welcome! I am brand new here. I had trouble with oxygen and then I found a way for it to work most of the time. I don't want to give you false hope because ymmv, but it's worth it to try again if you haven't tried the following:

1. I use a non-rebreather mask instead of nasal cannula, and press it close to my face to seal it and get max o2

2. I use 100% o2 not generator (sounds like you got this covered)

3. I use 8-13 lpm mask, or 12-15 lpm cannula, and I saw some people need 25 lpm

4. I concentrate on taking deep breaths, because sometimes I hold my breath from the pain by accident

5. It works in about 7 minutes for me. I think I read to stop after 20-25 min fyi, so you don't get light headed.

6. It doesn't work 100% of the time, more like 80%. I rely on triptans for the rest. Give it a chance. It took me 3-5 months of disbelief to believe the o2 worked, and I relapsed twice because I was in so much disbelief that it would work, I wouldn't use it because I thought it was pointless. But it does help, so really give it the old college try before you give up!


Good luck and hang in there!



{ big hug & badge of honor for keep on trying, you can do it! }

[edit: autocorrect keeps changing lpm to ppm lol]

Yes, you must have a minimum of 15 litres (25 is better)  per minute with a non rebreather mask.  It's vital to get it right as any other method won't work. This should abort even a big one in about 10 minutes, or less.

CH is caused by a dilated blood vessel in your brain pressing against the trigeminal nerve. High flow, pure oxygen is a vasoconstrictor. as is sumatriptan. It shrinks the blood vessel back to it's normal size, thus taking pressure off the nerve. The non rebreather mask has special one way valves, so no ordinary air can get it and the 02 remains pure.

If you are using sumatriptan injections which are miles better than the tablets, they come in 6ml doses. If you google "cluster headache splitting injection" there is a you tube clip of a guy showing how to get 2 doses from one injection, as most people find 3 ml is enough. You may have less side effects (heart) with a smaller dose.

I use the 02 at home and save the suma for when I'm out.

Given your medical history, including the lack of response to some of the old standard meds used for Cluster, suggest you ask you doc about the benefit of considering that you don't have Cluster.   See:


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Russ, you may be getting more than one headache type which may be further confusing the picture.

I'd make sure you're keeping a detailed headache diary and work with a headache specialist as this will be needed to figure everything out.