Friday, November 27, 2009

Sleep Issues II

Hope everyone had a great Thanksgiving? Ours was very nice. My sister and her family were down for a visit so my son got to play with his little cousin.

When I posted my last post, I got quite a few comments on Facebook saying that I'd put up some useful information. I figured I'd continue with the other sleep disorder I know plenty about, sleep apnea. I don't have it, but my husband did, and it's another problem often underestimated.

I guess first I should make it clear what sleep apnea is. Many people confuse it with snoring, which can be a symptom of sleep apnea, but is not the same thing. Sleep apnea is when you stop breathing in your sleep either because your airway collapses, or because your brain stops telling your lungs to keep pumping. When you stop breathing in your sleep, your body needs to wake up to resume breathing. You won't wake up long enough for it to register in your conscious mind, but will feel tired the next day because you didn't get much rest. Because most people don't see or feel apnea events while they happen, they tend to dismiss sleep apnea even if they are groggy. It often comes on slowly, so the person doesn't realize how much their quality of life has deteriorated.

I noticed my husband had sleep apnea right after we got married. He didn't snore. He'd just stop breathing (being an insomniac, I had plenty of opportunities to notice this.) For years I told him that I'd like him to get this checked out, and when he did, he had an apnea index of 41. That means he was waking up 41 times an hour, which is considered moderate apnea. The doctor prescribed him a CPAP machine, which pressurizes a person's airway so that it doesn't collapse. To use a CPAP, the person has to wear a mask and have a pump running all night.

Right before Trevor got his machine, I found an online article about "dealing with your partner on CPAP" and assumed it was about how to help them get good sleep. Well, it wasn't. It was a long whining piece on how unsexy and annoying CPAP machines are. I was surprised, but soon came to realize that many, many people react to CPAP this way. They don't see the apnea happening, so the machine looks like too much of a bother to use. Me, I liked hearing my husband breathe at night. I would gladly have put up with a CPAP machine for the rest of my married life. Even though the machine didn't help much, Trevor was immediately addicted to it, wanting so badly to get it to work.

Sleep apnea has been shown to lead to an enlarged heart, congestive heard failure, strokes, and even the occasional death by suffocation when the person doesn't wake up and start breathing again. I have known one person who died this way. When we tried to explain apnea to friends and family, people would often ask, "But don't you ever get *so* tired that you just sleep without waking up every minute and a half?" This is impossible. When you've got apnea, you must wake up or you will suffocate, no matter how exhausted you feel. Hence many apnea sufferers go through life so exhausted that they can fall asleep anytime, anywhere.

Unfortunately, a CPAP didn't work for Trevor. We had it fitted by the local DME provider, then went up to National Jewish in Denver, got another sleep study and a special mask fitting by a woman who does this full time. She said that Trevor was the hardest fitting she'd ever done (I don't think his head is shaped that weirdly, but whatever.) In the end, Trevor used a nose mask and taped his mouth shut - something doctors do not want you to do. It was the only way to keep the pressure up in his airway.

And that still didn't work. His exhaustion levels kept climbing. I'm not going to go into specific examples, because I don't think Trevor would appreciate that, but suffice it to say that things got rough. Sleep deprived people become irritable, disoriented, and depressed. There was a long patch when things kept going from bad to worse and an incident when I had to start calling around to family members for help to convince him to keep going to the doctor to work through one treatment after another. He had come to believe nothing would work.

After trying the CPAP for months, the doctors at National Jewish had him get a CT scan of his airway and discovered that not only did his windpipe narrow to only a centimeter for much of its length, his nose was all tissue and no airspace. We went to an ENT and first had him do an operationon his nose, which made his sleep better, but not perfect. I still noticed symptoms of the apnea, so he went back and had surgery on his throat. This, finally, worked. He breathes all night now and wakes up feeling rested. I have the man I married back, and I am so grateful for that.

I can't overemphasize the importance of getting a sleep study if you think you might have apnea. It's a silent killer that many people don't even know about, or dismiss. We've got a very unhealthy attitude about sleep in this country. People consider it only marginally necessary when it is the most important thing we do for our bodies every day.

Please do feel free to contact me with any questions about sleep disorders. I don't know all the answers, but I do know how to find them.

1 comment:

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