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Access to Treatment

Hello everyone,

I am Darwin. I have lived with Basilar Migraines for a few years now. I live in a constant flux of consciousness and when the pain really hits I faint and vomit. My biggest risk is fainting and drowning in my own vomit.Last year I found a study that claimed Oxygen helps in the prevention of migraines.

I live in Northern California (real nor-cal not the bay area). In my neck of the woods finding legitimate care is difficult. There is one Neurology group and they have no idea what to do. I had to travel 5 hours to San Francisco to even get diagnosed.

I also should say i am on medicare and not too financially fit due to an unrelated medical condition.

Also, my doctor prescribed oxygen however medicare (my only insurance) will not help with the cost.

There are two providers of medical Oxygen. The first one "Broadway Medical" (who has the market here cornered) is staffed by unprofessional religious zealots. They care nothing for care and have no need to even talk to you when you are the only person in the store. But they do have some reading material while you wait. I however have no interest in the Watchtower and Awake. The religious thing not withstanding they are willing to provide me with oxygen ONLY IF I AGREE TO RENT THEIR EQUIPMENT at an insane rate or if medicare will pay the cost.

Apria the only competitor in the area will not even provide me with Oxygen if i pay cash. They only work with insurance companies. What? Yes I said it. They sell a product exclusively to patrons of the insurance industry. Funny though I get my Bi-PAP supplies from them.

So i called the local dive shop. They claimed to fill oxygen tanks for $7.00. So I bought a tank, regulator, mask, hoses etc... I take the tank to the dive shop and they wont fill it.

Next I take the tank to a welding tank O2 supply company. They filled my tank for a one time only out of the goodness of their hearts but can not do it on a regular basis. And they charged me $30.00 to fill a small tank.

Great, now I can see if it works. I used the tank three times. 15 minutes when I felt a bad episode coming on. ALL three times I did not pass out and my recovery didn't take hours. I didn't even have to take the more powerful of my two prescriptions of opioids.

So, I have a tank nobody will fill. I have no access to oxygen to put into the tank. Oxygen compressors cost a few thousand dollars I don't have.

I am back to the beginning. I have a condition that can be treated with less reliance on harsh medication but I have no way to obtain the oxygen because i am too poor and/or not an insurance company.

My goal is to go back to work. This is one of my barriers. Does anyone know of any oxygen supply company that will deliver to Eureka, California? Or does anyone have any idea how to obtain 100% oxygen? I am out of ideas here.

Thank you for reading, I apologize for the frustration in my post. It is not your fault things are this way for me.

  1. Hi Darwin,
    Thank you for creating such an important topic on our forums.
    Access to treatment can be one of the most frustrating aspects of chronic migraine. Even some of the most extensive insurances have their limits and deem what is medically necessary regardless of what your doctor may prescribe. Have you tried calling your medicare provider and asking them what you can do to appeal their refusal to pay?
    Though it can be tedious and time consuming, most insurance programs offer the option to appeal. This is generally done in the form of a letter from you and/or your doctor.

    You can also ask your Senators and Representative to send a letter to the Secretary of Health and Human Services Kathleen Sebelius regarding Medicare and Medicaid coverage of oxygen for cluster headache.

    I know that these options seem like a long shot and will certainly take time, but unfortunately sometimes we need to prove ourselves to the people who make the rules in order to amend them.
    I hope that you get some more feedback from our community- perhaps someone has had a similar experience.
    Jillian ( Team)

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