Vicki’s Story:
I am a 47-year-old female and I have always had the loudest snore. However, other than snoring, I was a very atypical looking obstructive sleep apnea patient (i.e., not a middle-aged man with a big belly). About 7 years ago, I started falling asleep quickly and inappropriately.
Watching TV after work one night I awoke when a glass of milk I was holding spilled in my lap. Sitting on the floor, cleaning my rabbit's cage, I awoke four hours later asleep on the floor. I could barely stay awake driving. I developed constant headaches. I told my primary care physician (PCP) that I had headaches and was passing out. She gave me some medicine for the headaches and discounted my extreme fatigue by saying "you mean you're just falling asleep quickly". It was horrible, I felt as if a magnet was pulling me to lie down and I was powerless to stop it regardless of where I was. During this time I developed pain and swelling in my tendons so severe that walking was very difficult. One day, I pretty much collapsed at church and my friends took me to an urgent care center where they said I had Fibromyalgia. It was as if my body had started to shut down. My rheumatologist classed it as a rare arthritis; however, I now know my symptoms never occur unless I have been apneic.
I was in a deep depression. My psychiatrist was very concerned about my sleep disorder and called my PCP to express his concern. The PCP had me schedule an appointment with a neurologist. I was told I couldn't get an appointment see him for 3 months. When I asked if I could see him sooner, I was told "no, because your problem is not life-threatening". When I finally got in to see the neurologist, he was completely unsympathetic. I told him I had four sets of chores when I got home from work and that I would fall asleep between each throughout the night: I take care of my daughter (I'm a single mom), then I take care of my pets, then take care of the housework and finally I take care of myself. He told me I was doing too much and I was going to get myself fired from my job. He wrote a letter to my psychologist suggesting to her that I get rid of my pets. But, he did send me home for an overnight reading using a pulse-oximeter (a device to measure the amount of oxygen in the blood). They downloaded the results within 30 minutes of returning it to them the next day. But they never called with the results, so 2 ½ weeks later I called them. The neurologist himself called me back because the results showed that I have very severe obstructive sleep apnea (OSA) and he had me tested that weekend in a sleep lab. Needless to say, I changed my primary care physician and found an excellent doctor whose specialty is sleep disorders.
This was an extremely difficult time for me. My boss at my job at the time verbally abused me because I was sick. People thought less of me because I would fall asleep in meetings, but they never understood, nor cared, how hard I would fight to stay awake. During this period I gained weight and my blood pressure rose. Now I'm on blood pressure medicine struggling to get the weight off.
Before I was diagnosed, I would fight to stay up at night, exhausted as I was. After the first couple of nights with my CPAP, I distinctly felt that I wanted to go sleep. The techs in the sleep lab told me that this is a very common anxiety. Even though I was never aware of it, my body would undergo a life and death struggle to survive over 90 times an hour. It was as if someone was putting a pillow over my face each apneic episode. No wonder my subconscious didn't want me to sleep!
Before my sleep study, I had told my young daughter that mommy had trouble breathing when I slept and I might bring home an instrument that would help me sleep better. As I fell asleep beside her, I felt her little hand at my mouth, checking to make sure I was breathing. We talked a lot about the C-PAP and I printed pictures off the web of a system that happened to be the same as what I received. I had her help me put my C-PAP together. I put on the mask and turned it on so she could see that it would be hard for me to talk to her with it on. She crawled in bed with me that night and in the morning proudly proclaimed, "Mommy, I'm use to it now!"
I would like to say that all is great, but this is a constant, difficult struggle. At least I have learned what symptoms mean so that I can get proper treatment quickly. Further weight gain a couple of years ago caused a need for increased pressure, which I compensated for by opening my mouth during sleep. As expected, all of my apnea symptoms recurred. It took a sleep study to figure out what was happening, but now I have a full-faced mask and increased pressure.
Despite the difficulties, there are still many positives. I laugh that my cats attack my CPAP when it is off and harmless. My cats are my alarm clocks. Frequently, I will dive under the covers to avoid them, but one cat learned to wake me up by biting the hose and shaking it. He got into trouble for that since those hoses are expensive, but I still hear loud hissing and find teeth marks occasionally. Glad Wrap works well to seal the holes.
I am actively losing weight and last year I started doing triathlons. I am a musician and attend frequent rehearsals. My daughter and I do many things together ranging from performing in community theater to attending star parties. And, I have a new, rewarding day job. Obviously, I am much, much better. I just have to be very vigilant about making sure I have my mask on before I get into bed and getting enough sleep.
It has been a long, hard, difficult road and I could not have made it without the support and guidance of people like you who are reading this. Thanks bunches and I'll keep you updated!!
Vicki
