Posted by Thomas Hawkes on May 26, 1998 at 17:12:40:

In Reply to: Being treated but remain tired--please advise posted by John on May 19, 1998 at 19:04:03:

I have been using C-PAP for 2 years, 7 months. During that time, I have experienced many things that may be helpful to you in regards to your questions. But, before I start listing them, let me say the the most important thing for you to do is to remain hopeful. You didn't get the way you are overnight (pun intended), and you won't get out of it immediately either. Also, your needs will change as you body adapts to a radically different sleep pattern and will continue to change as you age. These are just the facts of life, and there is no "magic pill" to remove them from the picture.

Anyway, I want to start out by saying that I was one of those who experienced "dramatic" results with C-PAP the first week. But, this is not surprising as I was near death (from a lifetime of OSA and 12 years of continual deterioration). So, I think it was natural for me that a few nights of proper sleep were "welcomed" by my body and mind as a profound improvement. The irony is that I almost didn't give C-PAP a real try. When I was in the hospital for my first sleep study, they were not using a humidifier (cost too much) and this single thing made my sinuses so sore for a week that I couldn't imagine using C-PAP permanently. I am now grateful that my doctor pleaded with me to try C-PAP for a week with a humidifier to attempt to avoid a tracheostomy (the only other option for me. I think my doctor was worried that I might die suddenly (my oxygen saturations were under 40% for 60% of the night), and was desperate to help me. Fortunately, I did try C-PAP and the hospital now uses humidifiers for all its sleep-study patients (I live in a desert climate). My point in this long-winded testimonial is that without some faith that C-PAP would take time to adjust to, and did require some adjustments for me, I would be dead now. With that in mind, here are some ideas:

1- There are two important factors that will affect everyone's success with C-PAP: mask sealing and pressure requirements. These facts seemed to me, at first, to be obvious, but later I learned that I had to very slowly adapt myself to C-PAP. I had to learn to adjust my mask (I first tried three styles, used one for a year, and now use a better brand). I had to learn to keep the mask clean and to adjust it carefully. But, the most important thing was to learn to expect some trouble. I had to give up my hope for "no leaks" at all In fact, your comments suggest that what you are experiencing is totally normal: I get leaks when I turn over or change positions, too. However, I have noticed over time that my body has "learned" to avoid positions or movements that wake me up. This took some time and much patience. So, I would not agree with your statement that you have "adjusted to the mask." You cannot have done so in so short a period of time! You will, however, learn to avoid leaks that come from normal nighttime movements. My body has learned to "detect" a leak and move slightly to reduce it. I am sometimes barely conscious of this pattern, that's why I know about it. You, too, will adjust.

2- I discovered that once my sleeping patterns had stabilized (say,about 6 months into using C-PAP) that my need for sleep settled down to about 8 1/2 hours. This totally surprised me, because I had assumed that I would need much less sleep. After all, I had been surviving (read: slowly dying) from 10 to 12 hours of fragmented sleep. Shouldn't about 6 or 7 be enough? The answer was "No, I need at least 8 or I don't feel totally rested. I can function unlike before treatment, but I don't feel totally rested." So, not only have you not fully adjusted to C-PAP, you haven't yet found your "safe zone" as far as the amount of sleep you now need (or more accurately, what you will need when you totally adapt to sleeping with C-PAP). I like to remind myself of something I read once in a sleep deprivation article (which are almost always poorly written and misleading) that I have learned is true for me: if you need an alarm clock to wake up, you aren't getting enough sleep. I do set an alarm, but I know that if I naturally wake up a minute or two before it goes off, I've slept well that night. If I have to slam down the "snooze" button in a vain attempt to sleep a bit longer, I haven't slept enough. Maybe you will experience this pattern eventually, too.

3- I am very distrustful of ENTs--after all, they are surgeons and they get paid when they cut. If you study the evidence, surgery of any kind (especially laser) is very unlikely to help as much as C-PAP and will most definitely not "cure" you. Now, I will respect the fact that your doctor may be giving you good advice. However, MY advice is to seek out at least 2 other ENT's and at least 2 Pulmonary MD's and ask for their opinions. I think you will find that they recommend that you give C-PAP a longer trial before giving up on it. Also, you should know that surgery sometimes makes using C-PAP impossible (really), and leaves you with only the worst possible option left: tracheostomy.

So, here are my ideas in a nutshell: 1) you need more time to adapt to C-PAP, 2) you need to make sure your mask fits well and your pressure setting is right, and 3) you need to be realistic about the quality of your initial adaptation period. If you weren't sleeping well for years, it's going to take time for your body to "catch up" and relearn how to sleep.

Good luck, and please e-mail me directly if you would like to discuss this issue further. I've gone one so long here, I hope you'd stayed awake long enough to reach this sentence!

-Tom

Follow Ups:

• Re: Some suggestions about still feeling tired Joy 5/31/98 (0)

Copyright ©1995-2005 Sleepnet.com., All rights reserved