Person clings to oxygen tank

Cluster Attacks and the Plight Filled Journey for Oxygen

Experiencing cluster attacks for even seconds is too long given that it is the most painful condition known to medical science. Now, imagine there is a treatment that will stop an attack with no risk of side effects. What do you do when this treatment is restricted by your doctor, provider, or insurance?

My neurologist was a ware of the barriers

When I was diagnosed with cluster headache attacks, I brought up high flow oxygen to my neurologist. I had done my research prior to my appointment. He agreed high flow oxygen is the best and safest treatment. He told me there are many barriers to getting the treatment. I had no idea what he meant at the time. I thought I’d wait it out and be patient. However, I could not take triptans and there were no other abortive medications available for cluster attacks. Preventative treatment does reduce my need significantly since I have fewer attacks, but I still needed something to stop the attacks I get.

Roadblocks to high flow oxygen

I brought up the topic of high flow oxygen again. My neurologist agreed to prescribe it. I had to see this process for myself and he knew I would navigate the waters and report back. He sent my prescription to the company he most commonly works with. I received a call from them within 48 hours. I was so excited that finally, I was going to have an abortive for my cluster attacks! Within seconds the oxygen company representative told me my insurance would not cover oxygen. I asked if they had contacted my company and I was told no, they didn’t have my information. Instantly I started to see the problem. I continued the conversation. Advocates have been working to get CMS (Centers for Medicare & Medicaid Services) to cover high flow oxygen for cluster attacks.

A concentrator wouldn't work for me

I wanted them to run it through insurance to help make the point so I could have something to appeal. Then, I am told they don’t have equipment that will meet my needs.  I knew enough that basically I just needed the tanks.  So I started asking questions. They brought up a concentrator. I knew a concentrator would not work and I could not use it. However, our conversation went a bit like this.

Oxygen Company: “We will have to bring a concentrator.”

Me: “I don’t need a concentrator. I cannot use a concentrator”

Oxygen Company: “I know, but in order for me to bill your insurance company, you will have to get one.”

Me: “That raises my cost and my insurance company’s cost for a piece of equipment I cannot use.”

Oxygen Company: “I know. But. It’s the only way you are financially worth my time.”

They were going to deliver on Friday. I called my insurance company and their representative agreed that the oxygen company should not be allowed to force me to rent equipment I cannot use. However, they couldn’t stop them. So I canceled my delivery unsure of the cost I would endure.

Finally getting oxygen

I called around and another company agreed with this company. I found a smaller company and they knew what I needed and said they have a cash price.  It would be a small tank, but at least it would be something. I called my neurologist’s office and when they sent the prescription, they sent it back to the original company. I tried and failed to get the correct information a couple of times before I decided to wait for my next appointment.

Finally, I had my follow up appointment and I was able to explain to my neurologist why I was unable to get oxygen. He agreed to use the company I found. Within one week, the oxygen company received my order and delivered it.

Have you been able to access high flow oxygen to abort your cluster attacks? How difficult was it to receive or what roadblock is still in your way?

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