Co-founder of Alliance of Sleep Apnea Partners
About 15 years ago, I underwent a sleep study for Restless Leg Syndrome. When the study was over, I expected to hear something back in a week or two. Instead, the sleep doctor was waiting for me very concerned that my oxygen levels had dropped to 86%. Although, this didn’t sound bad or alarmingly to me, but my doctor was adamant that I start Continuous Positive Airway Pressure (CPAP) therapy immediately. I went to a local sleep doctor who explained why 86% was not good and that I did need a CPAP therapy. He sent me to a medical supplier who sat me down, showed me a machine, put a mask on my face, told me how to turn the machine on and sent me home.
I didn’t use it. I was embarrassed to wear it in front of my husband. Who wanted to sleep with Darth Vader? The mask leaked loudly with a very rude sound. Again, embarrassing. The hose was always in the wrong place. I do a lot of traveling and it was (and is) a real pain to take along. Honestly, I saw no reason to wear it because I didn’t feel any better and actually was getting less sleep than before.
Why didn’t I talk to my doctor about these problems? I tried. I explained that it just wasn’t working for me. He used a CPAP himself and proceeded to tell me that he washed his mask every night with lavender scented dish soap. “And I just drift off to sleep”—that was the extent of his help.
So, I went on-line looking for information on sleep apnea and CPAP therapy. Luckily, I found reputable websites and learned how untreated sleep apnea can affect your over-all health in detrimental ways. I discovered there were many different masks to try. I educated myself to the best of my ability and insisted on more information before finally finding a mask that works for me. And I did NOT go back to that doctor.
I also got involved in a sleep apnea group that has now evolved into Alliance of Sleep Apnea Partners. It has not been easy to come to terms with sleep apnea in my life. I found that I had to push for doctors and medical equipment suppliers to listen to me. I suffer from other health issues that might have been caused by being undiagnosed for so long. I still struggle at times, especially when it comes to traveling. I found out that my husband was fine sleeping with a masked wife. I found I had to be educated and vocal about sleep apnea. These two things give me better control over my sleep apnea.
I encourage anyone who suspects they have sleep apnea to talk to their doctor about it. If you have sleep apnea, do all you can to improve your situation. Don’t give up. You are not alone.