1 year of CPAP

Is was Jan 05 when I got the results of the sleep study and was given my cpap machine. It did take awhile getting used to it. But soon I was able to get 5-6 hours of sleep with it. My blood pressure dropped, my restless legs all but went away. After 4-6 months I started waking up almost exactly an hour after going to sleep. I was having no problem falling asleep, but waking up regularly. When I woke up like this I could not go back to sleep with my mask on, but if i took it off, I could. The doctor tried me on Ambien, Lunesta, and now Ambien CR and it helps for a little while, but I'm still waking up and can't get back to sleep. Once you decide its ineffective plan on 2 or 3 sleepless nights when you quit taking it! I had another sleep study done and even with Ambien CR that night I kept the mask on all night, but woke up multiple times. So she jacked up the pressure and said, see you Jan 31st, if things aren't better she is refereing me to a surgeon for tonsil removal and probably pallet surgery? Since then no better. I got a cold just after christmas and haven't been able to wear my mask for a week. Over the past 3 weeks I've developed severe insomnia where my mind races and the only way to get any sleep is to get up for a few hours, then back to bed. At least I've learned I dream in black and white. Our family has been having fun playing a game called zuma on the PC which involves several different colored balls. I was playing it for hours one day. I thought I quit long enough before bedtime, but I found my self awake after a few hours playing the game in my mind. I was extremely frustrated that I couldn't play because I couldn't tell the colors apart. Other nights something I saw on TV stayed with me all night. I rarely have any caffeine any more and try to cut off sugar in the afternoon, but the insomnia has been bad with only sleeping through the night 3 times in 2 weeks. My restless legs have advanced further than ever to aching in bed and even during the day.

Now I can't wait for that referral and maybe the surgery. I'm desperate. I lost my job in Oct, due in some part to my lack of sleep. Being unemployed seemed like a good time to force myself to wear the cpap all night, but it is like the worst form of physical torture knowing you can't sleep. I"I'm near witts end, frequently irritable. God help the person who crosses me.

In many ways your story is similar to mine, especially the insomnia part. I used to spend upwards of an hour trying to fall asleep, and when I did I would waken multiple times a night and have trouble going back to sleep. Some nights I would swear that I slept ZERO, but would still get up and go to work (and try to stay awake).

The remarkable thing I learned at the sleep study was that I actually did fall asleep quite easily, but had an OSA event early on that would wake me up, often only minutes into light sleep. Then repeat. Eight hours of THAT, and I would probably fall asleep and wake up hundreds of times in a night. I would only remember the wakefulness part and staring at the clock and seeing the whole night go by looking at the clock.

Using a straight CPAP would deal with my OSA, but the pressures required were so uncomfortable that I still could not sleep, but for different reasons. The answer for me was the AUTO apap, with lower pressures most of the time, and just enough pressure to compensate for any OSA events as they occur.

My experience has been that since starting the APAP I now sleep the whole night through, only rarely getting up maybe once in a night for a trip to the bathroom. And I have had zero uncompensated OSAs, even at some fairly high pressures. The pressure response is so gentle it doesn't wake me up, I only learn about these by looking at the data the next morning. Once I put on the mask I am asleep, and the next thing I know it is morning and the alarm is going off. And I am ready to leap over tall buildings in a single bound.

Without knowing your details, perhaps you have OSA events for which the CPAP pressure is inadequate. Or the pressures are too high to sleep comfortably. And keep in mind a sleep study only represents YOU on a given night. Some people (myself included) have widely varying pressure requirements. A straight CPAP on a single pressure setting will not deal with those variations. It can be a vicious cycle: the more sleep you lose, the more fatigued you become, the more severe the OSA, and the less likely the CPAP will deal with it.

Possibly an APAP would serve you better. Cheaper than a tonsillectomy, or a uvulopalatopharyngoplasty.

Great point, Ric. APAP's make a difference.
O.

wmccall wrote: if things aren't better she is refereing me to a surgeon for tonsil removal and probably pallet surgery?

---snipped (no pun intended!)---

Now I can't wait for that referral and maybe the surgery. I'm desperate.

You are really, really going through a tough time, wmccall. Very sorry to hear it.

Ric offered a great suggestion...AUTOPAP. That kind of machine might -- just might -- turn your treatment around to going in the right direction.

The doctors are, unfortunately, usually rather clueless about treatment issues when it comes to machines and masks. "CPAP", they understand. "Autopap", they generally either aren't aware of, or distrust. See if you can get your doctor to let you switch to an autopap for awhile. Let the machine find the pressure you need during changing sleeping conditions throughout the night.

But don't set the autopap's pressure range "wide open" (4 - 20.) I'm not a doctor, but I'd suggest setting the autopap for 2 cm's below your prescribed pressure and 4 cm's above it. See how that goes.

The mask is the biggest piece of the puzzle (imho) for getting along with this kind of treatment. If you're having significant mask and/or mouth air leaking problems, those things can interfere terribly with good treatment....and with comfort.

Has the doctor ever prescribed any meds specifically for your RLS, especially now that the RLS symptoms have returned with a vengeance?

Please read as much as you can about UPPP experiences. Having the soft palate carved out rarely is a longterm cure for OSA, and often leaves people with permanent aggravating side effects (like liquids shooting out the nose when swallowing.)

Read, read, read before letting any ENT talk you into a UPPP. The lower third of the page at the link below provides many discussions by people who have had that procedure. Most regretted having let that be done to them as it usually does NOT cure OSA.

I'm perfectly happy and well treated with autopap, but If I were going to look into something other than xpap treatment, I'd go the TAP II route first. If that alone didn't work, I'd add the Pillar procedure to the TAP II dental device. If I were going to go drastic, I'd look at MMA (and I'd want it done at Stanford.) But I'd personally never go the UPPP route. Never.

LINKS to surgery, turbinates, Pillar, TAP experiences

WMCCALL,

I really hope that after a year I am not in the same situation as your are. i would take the others advice before going through the whole UPPP. Now, if you need your tonsils out that is another thing. I have just started CPAP and wake up after 4 hours or so and rip it off my head. SO, I have yet to see good results, but my apnea is mild, and I have fatigue froma few sources. The most I can say is I wish you the best. Maybe look into dental devices too, which may have a better result for some people depending on their problems. They of course are not cheap, but works for one they say doesn't work for everyone.

God bless
Chelle

Hi WMCCALL,
Sorry to hear of your troubles. Beware of UPPP surgery. Lots and lots of pain, very few success stories. My untreated AHI 1 year after surgery was 94, and I still snored. You need to find a way to get some sleep! Have you tried meeting with a psychologist to see if they can help you to find the underlying cause of your insomnia? Years ago, I had issues and the person I worked with gave me some tapes to help me learn how to totally relax and sleep. They really worked for me. Good luck in your quest for good health, and whatever you do, don't give up. Feeling good is well worth the effort. I know, having experienced both sides of the coin.