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Rorytheherb

Hello everyone

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Hi everyone, 

I just found and joined the site. I will make a separate post describing my own CH experiences, but i'm on a phone and that would take too much effort for my thumbs. In the mean time, I want to ask you all if anyone has used the oxygen cans (e.g. Boost) that are marketed to hikers and athletes. They are 95%, 10 L per can for about $13.00 on Amazon. Would that be comparable to the official prescribed oxygen? I am hoping this might work for me in lieu of re-entering the medical/industrial complex...

Thanks 

Rory

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Welcome to the community Rory but sorry you have the need to join us!

Unfortunately, boost doesn't have enuf O2 to abort even 1 hit for most folks.

Many of us ditch the doc and O2 suppliers and put our own welding oxygen rig together.....cost is around $400 for a large (48" tall x 9" diameter) cylinder, a weld ox regulator from harbor freight......and the Clustero2kit from our sister site.......refills (exchange) runs me $21.

Dallas Denny 

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Welcome Rory. Glad you found the group. Rest assured the info and knowledge here is a tremendous help to CHers & their supporters.

Dallas... I think it was Dallas (pardon my memory impairment) has given me info on using welding oxygen.

I'm calling local suppliers to inquire about leasing a tank.

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Hello Rory,

Welcome to this forum !

I share the opinion that the athlete bottles do not contain enough oxygen. For one abort, you would need, let us say, at least 15 min x 15 l/min = 225 liters. That is the strict minimum for just one abort trial without aftercare. Realistically we do need much, much more. A few weeks ago I had an attack session of 24 hours and I got through ~3000 liters.

I hope you can get your hands on oxygen soon ! From what I can read from the US colleagues here, it can be challenging to get oxygen but it seems there is always a way out.

Luckily here in Belgium the situation is different: A CH diagnosis from any neurologist entitles the patient automatically with a lifelong unlimited supply of medical oxygen + other necessities like mask etc... It really make sense to order the clusterO2 kit from clusterheadaches.com. Some call it the "Rolls Royce" under the masks and its very good. I ordered mine 6 months ago and I remember I ordered it on a Monday morning and one hour later after ordering I already got a confirmation it was shipped and I received it 2 days later. So I would say their service is very honest and reliable. And if you are a real oxygen fanatic who want to bring it to the next level, there is the oxygen demand valve as well. For example from BRP.

Hope to read soon about your further CH experiences !

siegfried

 

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