The Impact of Oxygen

My name is Margaret and in addition to migraine, I also have a rare genetic neurodegenerative disease called Adrenomyeloneuropathy (AMN).

I’ve been on supplemental oxygen when I sleep for six years. My journey started about seven years ago. I told my neurologist at the time that I had been waking up with headaches. He ordered an overnight sleep study. Afterwards, at my following appointment, we discussed the results. He said that there was nothing to be concerned about, and that my headaches were a mystery.

Fast forward a few months, he retired and my care had been transferred to his colleague. At my first appointment with her, we were reviewing my chart when I mentioned my headaches and the sleep study I’d done. She looked at the results and said, “Oh my.” She asked me what the previous neuro told me. I responded that he didn’t find anything alarming. She then said that I should have been put on night time oxygen immediately after that study. She turned the file around so that I could see, and she pointed out that my oxygen level had dipped to 87%, and it stayed around that low for almost three hours. Too much time had passed since that study for my insurance to accept her ordering an oxygen concentrator, so I had to go through another sleep study. As soon as she got the results, she called me and told me that she was putting in an order for a concentrator immediately. I went to the oxygen supplier she recommended, nervous about the prospect of having to wear a mask and have tubes everywhere. Imagine my relief when the respiratory therapist brought out an oxygen concentrator that’s about 18” tall on wheels, and hands me a cannula (a long, narrow clear tube with small little tubes that go into my nostrils). No mask! No large hoses! I was so relieved!

It was a bit of a challenge, still, though. I had to get used to the noise of the concentrator all night, which sounds something like a white noise machine. I still have problems with the inside of my nose getting dry because of the constant flow of air from the concentrator. But the best part is that I no longer wake up with headaches. I’m not fatigued during the day. I’m more normal.

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