Hello there all. I've suffered from these demonic headaches for about 20 years now. 10 years ago I finally found a Doctor who was able to diagnose me with CH. He was excited to meet someone with this condition because he had recently read a study about O2 treatment for clusters, and wanted to see if it really worked. It did! I finally had some relief! Dealing with oxygen suppliers was interesting though. They had no idea what I was talking about. No one in their offices had ever heard of cluster headaches. They were confused about the lifetime perscription my doctor wrote, and had no clue how to charge for cylinders I may not refill for 6 months then suddenly need refills twice a week for a month. We were able to sort it out. I bought tanks and a regulator, and the office staff at my local Lincare, and I, became familiar. Then I moved to a new city. What a nightmare! I found a Lincare, and began the process of explaining, and trying to get my 2 cylinders refilled. They wouldn't accept my lifetime perscription so I had to get a new one. I was finally able to get them to help me. That was a year ago. I just started my Fall cycle of headaches last week. I ran out of O2 last night, so I went to refill my tanks today. They wouldn't help me! The, very rude, manager said I wasn't in their system, and even if I was they "don't do that anymore". I asked her what "that" meant, and asked "Why does it say medical oxygen on your door if you don't supply oxygen?" She said they don't do "cluster headaches anymore". That's it. No other explanation. They will supply oxygen to anyone with a perscription from their Doctor unless it's perscribed for cluster headaches! I am furious! I won't be able to get another perscription until Monday, so I get to suffer through this weekend banging my head against the wall because the salt Lake City Lincare doesn't "do that anymore". To top it all off, if the incompetent folks at Lincare wouldn't have lost my info they could have transferred it directly to another supplier. I could have gotten the oxygen from them today. The only reason I can think of for this ridiculousness is that they don't make enough money selling their air to me because I don't need as much as other people who use oxygen.

Don't mention headaches or any medical condition. Tell them you are learning how to weld. O2 for welding is the same as medical O2.

Hey Ryenne,

Bob is spot on.  You need to take up welding...

The bureaucrats at the Centers for Medicare and Medicaid Services (CMS) have "serviced" you with their 2011 Coverage Determination NOT to cover medical oxygen for Medicare beneficiaries with cluster headache.

Find a local welding supply outlet and buy an M-Size welder's O2 cylinder.  They run between $250 and $290.  After that, you drop off the empty O2 cylinder and pick up a freshly charged cylinder for around $35 to $40.  You'll also need a CGA-540 to CGA-870 transfiller adapter for $100 to refill your two small oxygen cylinders.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Take care and check your email.  I've sent you some info on preventing CH with the anti-inflammatory regimen to discuss with your PCP or neurologist.

V/R, Batch

I have never heard of a "lifetime o2 prescription". In Michigan it is one year long. And my insurance requires I see the Doctor within one year of the Rx.

I think your prescription has expired? Lincare in my State handles CH patients.

I agree that welding is an option.

Nothing bad meant by my last post. I've been where you are. I can't count how many times I've been given the wrong mask. My prescription read Non-rebreather, the worker tried to convince me I didn't need that.

I hope you get set up soon!

I have found that it is better to just purchase some parts of your O2 system, rather than argue with an O2 supplier. 

For example the mask system recommended/sold here on the site was the best addition to my O2 regime. It is quite reasonable in price, durable, and specifically designed for our needs.

I have a kit in my home, and a kit I keep in the car with a D size cylinder.  I also purchased my high flow regulators off eBay. 

Although I do have a script and exchange E size cylinders with a medical oxygen supplier, I am also a welder and have used that oxygen at times.  My welding O2 cost is quite low, but my cylinder is very large and stays in the shop.