It’s true. You don’t know what you’ve got ’til it’s gone.
Or in my case, almost gone.
The short story is that two weeks ago, I checked into a sleep disorder clinic. That night, I was horizontal 481 minutes and “slept” 427 minutes. However, during my seven hours of “sleep,” I had 337 total “arousals,” the bulk of them respiratory. That’s 48 arousals per hour, almost one a minute. During REM, it was more than one a minute. (An arousal is a 3-5 second unconscious awakening.)
I thought sleep apnea was something rare, something that happened to other people. I thought snoring was normal. I was wrong.
The Long Story
Snoring runs in my family, and my mother was more likely to be the parent who fell asleep in front of the TV than my dad. In 1990, she had a stroke. She lived another 16 years, although her quality of life took a nosedive because she could no longer drive a car, curtailing a fierce independence. It’s only now that I realize her stroke might have been prevented – or at least deferred – if we had treated what I now realize was sleep apnea.
Snoring is not itself an indication of apnea. But I think if your family environment is full of people who snore, you think of it as normal. So when your friends say “your snoring kept me awake” or “I’m not sharing a hotel room with you again!” it’s easier to discount their observations. My friend Judy insists that she told me 15 years ago that I didn’t just snore, that I also stopped breathing. What I remember is the observation about snoring.
In 2001, I was deathly ill in Europe (with emergency surgery and two weeks in the hospital). Upon returning to the States, I had a complete hysterectomy after my infection recurred. Shortly thereafter, my blood pressure rose enough that my primary care physician wanted me to take a mild diuretic. I developed gastroreflux. (I had never had heartburn prior to this and didn’t know that was what I was experiencing.) I gained weight. I was prematurally menopausal, and that was the explanation given for all three major health changes.
Earlier this year, I started seeing a nutritionist. He remains suspicious of my estrogen (estradiol) patch, but with his guidance I have shed about 20 pounds since March. Despite feeling better, looking better, I have remained fatigued. I often wondered if I had chronic fatigue syndrome (although this is the first time that I have voiced that worry out loud). My therapist recommended delta and theta music years ago; for much of this year, I combined a Soaring Crane Qigong lying down meditation with theta music as a sleep cocktail. But I’d still start the day less than fully rested.
Something happened in October. I don’t know what it was, but I began to fully realize how tired I was, no matter how long I stayed in bed. When I was younger, six hours sleep was more than enough. But now I did not feel any more or less rested after 4 or 8 or 10 hours sleep.
Then my friend Ed wrote about his experience in the sleep lab when he was fitted with his C-PAP. (He has a reputation as the loudest snorer among my motorcycle buddies.) I talked to him about his symptoms and then read a little about sleep apnea …. and had that “ahhhhhh” moment of recognition. High blood pressure and gastroreflux are two symptoms of apnea. Dry mouth (I’d been sleeping with a glass of water bedside for months). Irritability (there have been times recently when I feel like I’m as irritable as I was right after the hysterectomy).
In November, I went to an event in Reno where I shared a hotel room. My intent was to ask my roomie to listen out, to see if I stopped breathing, but I forgot. Nevertheless, the first words out of Peg’s mouth the next morning were, “Kathy, you need to see a doctor. You stop breathing while you sleep.”
Virginia Mason Sleep Disorders Clinic
I called my doctor’s office to see if I could get a referral without a visit; she was out of town. The following week, her office called back with her recommendation: Dr. DePaso at Virginia Mason Seattle. I saw him 1 December, then spent the night in the lab on the 18th. Thursday I got the results; in two more weeks I’m back in the lab to make sure a C-PAP works for me. Then the next week I’ll get my own.
Just before I left home for the sleep lab on Friday 18 December, I shared on Facebook and Twitter what I was doing and that I was a little nervous. I was a little shocked at how many people (mostly guys, there is a stereotype for a reason, I guess) passed along words of encouragement based on their personal experience with apnea.
I had to check in by 8 pm. My paperwork said lights out at 10.00, which made me groan because I thought Dr. DePaso had said I could stay up later, since I’m a night owl. Turns out I was allowed to stay up until 11.30! Mike arrived about 8.30, and soon Jody was wiring me up. She was cheerful and funny and informative; we were both impressed. In addition to the standard (if you’ve had surgery) EKG hookups, I had electrodes on both calves (to measure leg movement), chin, upper jaw … as well as electrodes all around my head. Jody patiently explained what each one was measuring.
Mike left around 10, and I read a book and listened to Christmas music (Pandora on the iPhone) until 11.30. Jody hooked my little beige box to the lab computer and put an oxygen sensor on my left index finger, oxygen feed into my nose. Then I lay flat on my back as she walked me through a series of body and facial movements and breaths to “train” the equipment. Turn onto my left side, lights out.
I slept for two hours before awakening. Jody quickly came in the room to replace the electrode on my left calf. Lights out again. Another hour, wake up, turn the phone over, check the time. Close eyes; back to sleep. Another hour. Rinse and repeat. I think I woke up once an hour, except for the last hour, when I woke up twice. When I say “woke up” I mean that I was awake enough to know that I was awake. According to Dr. DePaso, that means at least 30 seconds of “changed state” (sleep to wakefulness or vice versa).
Then it was a long shower to get the gunk out of my hair, Tully’s for coffee (where I left my pillow) and breakfast at The Pancake House in Edmonds.
Thursday, I had an appointment at noon in downtown Seattle, a conference call at 1pm and my followup with Dr. DePaso at 2 pm. I knew these times like the back of my hand. And yet I looked at my calendar in the morning and said to myself, I need to leave the house at 12.30. There were no red flags waving, although I do remember looking at the clock around 11 am and doing the math again… and once again coming up with a 12.30 departure.
Sometimes I have to be hit in the head with a clue-by-four, and that fogginess brought my tired mental state home in a way nothing else has done until now.
For those of you interested in numbers, here are the highlights of my diagnostic sleep:
- Total sleep time, 427 minutes; time in bed, 480.5 minutes
- Total arousals, 337; respiratory arousals, 268; PLM arousals, 7
- Obstructive apneas, 38
- Central apneas, 19 (all during REM)
- Hypopneas, 195
- RERAs [partially reduced breathing (<50%) that lasts more than 10 sec], 58
- Mean Sleep SaO2, 95%; minimum, 75%
- REM sleep, 48.5 minutes; REM arousals, 66 (84 per hour of REM v 43.6 per hour of sleep)
- Snoring, “loud” (LOL!)
- Stage N1 – 40 min (9.3%)
- Stage N2 – 270.5 min (63.3%)
- Stage N3 – 68 min (15.9%)
- REM – 48.5 min (11.3%)