(02-20-2012, 11:20 PM)SuperSleeper Wrote: 1. How is CPAP therapy making a positive difference in your life? What impact has it made upon your health & happiness?
After a few bumpy spots in the road, I started feeling much more rested in the morning, needed less sleep. Once I learned the ropes, I've never had a problem with CPAP. This was many years ago.
Later on, I lost some weight and didn't need sleep medicine, so I might not have sleep apnea any more, but I now have big trouble breathing through my nose at night, because of nasal congestion. The doctor says there is nothing he can do, can't find anything wrong. So, now I use the CPAP, with nasal pillows, so I can breathe through my nose at night.
I just got an APAP with data recording, so I'll find out if I still have obstructive sleep apnea.
(02-20-2012, 11:20 PM)SuperSleeper Wrote: 2 Have you had any problems with CPAP that you solved with a positive outcome? If so, what did you do to solve the problem?
This little story is for the benefit of those who get discouraged or angry along the way and feel like giving up.
Before I went to the MD, I was pretty sure I had sleep apnea. When waking up for brief periods at night, my wife noticed I would often stop breathing for as long as a minute, possibly more. I had been feeling that sleep was not restful. I did not have daytime sleepiness, but I don't often feel sleepy during the day. I was somewhat depressed and sluggish.
I am a Kaiser subscriber. A staff-model HMO. That means all services are provided by salaried Kaiser doctors, under Kaiser's roof and according to Kaiser's rules. Normally, I am satisfied with Kaiser, and actually prefer it to other plans.
The MD didn't exactly roll his eyes. Without much discussion, he wrote me a referral to the sleep clinic. When I didn't hear anything for a long time, I called. The snippy receptionist said there was a long waiting list and I would just have to wait my turn, like everybody else. There were only so many beds available. I waited another six months, then submitted a formal complaint. HMOs try to make you think they have no staff to receive and process complains, no address for complaints, and so on. They do, but they don't want you to know that.
A couple of months later, I received an appointment in the mail. I had quite a few questions, no way to ask them. The main problem was, I was having very serious, ongoing problems with insomnia, probably not caused by the sleep apnea. More likely the other way around. I was taking benzodiazepine sleeping pills (like Xanax, Tranxene, Restoril, Lunesta, Ambien, Halcion, and so on). I can't remember which one I was taking at the time. Probably Tranxene. I found out much later that benzodiazepine sleeping pills often cause
obstructive sleep apnea, or make it worse, because they are muscle relaxers.
I was told not to take any medication the night of the sleep study. I knew that I would not sleep if I didn't take my meds. How can they do a sleep study if I'm not asleep? I didn't know what to do. When I got there, there were no doctors around, only a nurse or technician in a permanently bad mood. When I asked her about taking my meds to sleep, she was rude and impatient. "Just follow the rules!" She came into the room about once an hour, demanding to know why I wasn't asleep yet. I tried to repeat my question. She didn't want to hear it, just stomped out again. I was tired, of course, miserable, but not sleepy, as expected. I snuck my usual dosage of sleepy-medicine in. Around 3 AM I just took the tablets, without water. She saw me on the closed circuit TV. She immediately wanted to know what I had done. I told her the truth. She seemed puzzled, along with her usual irritation. I dozed off. I guess at some point they hooked me up with a CPAP. Maybe I slept through it.
The next morning, I spent perhaps 10 seconds with the MD. I had "mild" sleep apnea. I found out later that by "mild," he meant, "not immediately life-threatening." He gave me a prescription for a CPAP, 7 centimeters. Well, he didn't give it to me. He said he would "Send it in." I didn't even know what that meant. He was on to the next patient.
I found out that my HMO doesn't pay for durable medical equipment, like CPAPs, and required me to get a CPAP from their contracted medical supply company. I went to see them, didn't like them at all. They were in a hurry, didn't want to answer my questions. I found out I would have to pay a hefty monthly fee to rent the CPAP. In a few years, I would have paid for it many times over.
At the time you could buy CPAPs on eBay. I got a used one, cracked it open, found the pressure setting knob -- they were mechanical back then, set it to 7 cm, the prescribed pressure.
Then there were problems with masks. The medical supply company was rude and useless. They kept saying my mask "shouldn't leak." They only offered a small number of models and makes. It doesn't help that I have a beard and mustache (both trimmed and tidy, but hairy).
Back to the internet. I found a dealer who would answer my questions over the phone. Nasal pillows were the happy magic answer to my mask problems. I've tried other masks since then, but never found anything that worked so well, and so comfortably. Also, much easier to sleep on my side.
It took awhile to get used to sleeping with a CPAP. I started wearing it for an hour or two before bed, reading, watching TV. After a few days, I hardly noticed when I had it on.
All these problems solved, I started sleeping very restfully, relieved that my ordeal was over.
Inflamed nasal passages became a problem after awhile. Heated humidifier solved that. I don't know how I got along without it.
At some point my internet dealer told me I would no longer be able to purchase supplies without a prescription. My prescription had been sent directly to Kaiser's medical supply company, so I basically didn't have one.
I went back to Kaiser. I was implacable but not rude. I insisted I had a right to my own copy of my own prescription for future use. I wouldn't leave without one.
I left without one, but returned several times, until they got sick of me. They gave me a copy of my prescription and actually wrote "lifetime prescription" on it. I don't know if that doctor hated me or admired me.
One problem occurred subsequently. Suffocation nightmares every now and then -- terrible panic, dreadful. I gradually realized that sometimes the blankets or sheets would cover the little exhaust hole in the bit of hollow plastic that the nasal pillows plug into. I guess that's a mask. Carbon dioxide builds up in the hose after awhile. I made a little plastic tent out of polymer clay, glued it in place, so that the little hole still vents normally, but the bedclothes can't cover it any more. Problem solved!
My machine is advertised as "whisper-quiet" but it isn't. I tried various gadgets and strategies. Tried to make a soundproof box, it did no good. I worried the constant humming and whining at night might slowly damage my hearing. Then one day -- Brainstorm! I put it under the bed -- there's carpet under the bed. Got a longer hose, put the heated humidifier on the nightstand, made a gadget so it's hard to knock over the humidifier, hung the hose on the wall with string and a thumbtack. NOW it's "whisper-quiet."
I don't take sleeping pills any more. That gradually got better -- a different story. But a clumsy attempt by a highly-quaified ENT to straighten my crooked nasal septum left my nose forever congested -- mostly when I lie down. My mouth gets so dry at night that it's painful and wakes me up -- every half hour. Misery! But my CPAP makes it possible to breathe through my nose at night, so I still use it.
My old CPAP is wearing out. I just ordered a new APAP with data recording. I'll find out if I still have obstructive sleep apnea. I'm kind of curious. Even if I don't, I'm tired of my mouth drying out at night, so I'll probably keep using it in any case.
As Winston Churchill said, during the darkest days of World War II, "Never, ever, ever give up!"