A question many of us have no answer to!

DCTom · Post by **DCTom** » Fri Aug 12, 2005 12:53 pm

As some of your know, I tried CPAP for nearly a year without any succcess. Oh it stopped my apneas alright, but I was as tired as ever. Even more tired than ever! I see quite a few posts on this board, and others, from other people who are experiencing the same thing. Many of these people eventually give up, or take Provigil, or whatever. I think we all deserve an answer as to what's going on. I've not seen any good answers here, nor has my doctor given me any good answers. In looking at clinical studies, I see that a fair amount of people bail-out and don't continue with CPAP due to various reasons. I think one of those reasons is that CPAP makes them feel worse. Why? I theorize that for some people, the pressure does more hard than good in terms of curing tiredness. I don't know why this is so, but I feel CPAP makers and doctors should explore why this is the case. I've heard many reasons (REM rebound, etc.) but I don't feel any of them are acceptable answers. I've turned to a dental device, which seems to be doing the trick. Now answer this question: Why would a dental device which simply opens my airways work so fast, but CPAP which also opens my airways not work at all? Why does my dental device not make me tired, not give me REM rebound, etc. when CPAP does? Dont' give me the APAP answer as I tried that. Don't give me the different mask answer as I tried that. I am very interested in hearing your responses and theories.

rested gal · Post by **rested gal** » Fri Aug 12, 2005 1:32 pm

Leaving alone the issue of whether the pressure was ever really "right" for a person, the sleep disruptions caused by any number of cpap equipment related issues can create problems, leaving a person more tired than before:

Leaks (mouth or mask or both).

Discomfort from mask or nasal pillows pressing on areas of the face/nose.

Noise from mask or machine.

Inability to sleep in one's favorite sleeping position because mask gets dislodged.

The feeling of "something on the face", perhaps resulting in unwitting mask removal during the night.

Not using the machine and mask for every sleeping moment - perhaps because of some of the issues above.

At any rate, even after a person has done everything he or she can to make cpap work, it just isn't the best answer for some people. Sleep disruptions are sleep disruptions, whether the arousals are from apneas/hypopneas - or from equipment issues.

Ever since reading about the successes several have had with dental devices like the TAP II and the Pillar Procedure together, I've been pushing this link forward again and again:

LINKS to surgery, turbinates, Pillar, TAP experiences

I'm comfortable and well treated with machine and mask, so I'm not interested in pursuing another method myself. However I do agree, Tom, that sleep doctors should educate themselves MUCH more about the possibility of MRD's (mandibular repositioning devices) working better for some of their patients than cpap does.

Glad the dental device route is working so well for you, Tom. Don't forget that follow-up PSG to be sure it's doing everything you need it to do! You might need to add pillar procedure in time, as PaulY and some others did.

Janelle · Post by **Janelle** » Fri Aug 12, 2005 6:48 pm

And Tom, it could be like me, although I was doing "well", I wasn't doing great, until it was discovered 6 months into treatment that I still wasn't getting stage 3/4 sleep. Now that I am, with medication, I feel like a new person. And I'm sure I'm not the only one out there, since this seems to be a very wide-spread off-label use of a drug for narcolepsy. My own Sleep Dr. has 80 patients on it, all the way up to 83.

BrewSwain · Post by **BrewSwain** » Sat Aug 13, 2005 5:25 pm

this seems to be a very wide-spread off-label use of a drug for narcolepsy. My own Sleep Dr. has 80 patients on it, all the way up to 83....................
Janelle, What does that mean? What medicine? Thanks Bruce Wayne

Swordz · Post by **Swordz** » Sat Aug 13, 2005 6:02 pm

You know, its quite wierd. I, like DCTOM, have given up on CPAP and have chosen to pursue the dental devices.

I it is so wierd, that know I have after I've tried CPAP, I have this wierd rage towards it. This answer my doc and so many other people told me would work, in a sense "failed". I know it was my choice, and CPAP is VERY successful in alot of people.

But its like I have this negative attitude toward CPAP now. Is it because every1 seems to sell it as a cure all? Maybe its the fact that alot of people don't explain that it isn't for every1, and your syptoms won't magically dissapear.

Do alot of people get pissed off to when they realize that sleeping 1 night with the CPAP doesn't solve anything? Crazy the amount of damage we do ourselves with years of apnea, and also the amount of time it takes to overcome that damage.

This forum is very knowledgeable and supportive and I hope I don't distract or deter anyone from CPAP usage. I just wish I myself will find success in dental devices.

Arg!!!!! WHY DO WE HAVE TO HAVE APNEA????

neversleeps · Post by **neversleeps** » Sun Aug 14, 2005 10:32 am

BrewSwain,

Here's a link to a past post by Janelle regarding her very successful experience with the drug Xyrem.

Energy- By Golly, I think I finally have it!

neversleeps · Post by **neversleeps** » Sun Aug 14, 2005 11:02 am

Swordz wrote:.... This answer my doc and so many other people told me would work, in a sense "failed". I know it was my choice, and CPAP is VERY successful in alot of people.

... Is it because every1 seems to sell it as a cure all? Maybe its the fact that alot of people don't explain that it isn't for every1, and your syptoms won't magically dissapear.

Do alot of people get pissed off to when they realize that sleeping 1 night with the CPAP doesn't solve anything?

Well, CPAP therapy itself is proven to work. An individual's ability to tolerate it is a whole different issue. In other words, it would work if you used it.

I sure hope your doc didn't tell you your symptoms would magically disappear and that 1 night would solve everything. If he did, you should immediately find a new doctor! CPAP is an onging commitment. In other words, it would work if you used it, and you have to keep using it. An analogy would be that CPAP isn't like taking an aspirin so your headache goes away. It's like taking blood pressure medicine every day of your life to keep it in check.

I really hope you find success with a dental device. You may also want to consider a dental device in conjunction with the Pillar Procedure (a very minor office visit surgical procedure). It appears this 1-2 punch can be very successful for certain people, depending on their anatomy and type of OSA.

Good luck!

christinequilts · Post by **christinequilts** » Sun Aug 14, 2005 5:25 pm

xPAP therapy can disrupt sleep just as apneas do...the hope is that xPAP will distrupt your sleep the least and be the lesser of two evils. I found myself in an unusaul situation when my titration showed BiPAP ST could only reduce my central apneas 50% leaving me with 30+ per hour and a slightly lower O2 percentage. My sleep doctor left it up to me to decide if I even wanted to try it and he went as far as providing me with a loaner BiPAP ST for the first month free of charge (which is pretty good when monthly rental runs $500-750). I was at a point I didn't have another choice and thankfully BiPAP ST does make a difference though I still struggle with daytime sleepiness and crappy sleep from all the apneas. At one point my DME put me on a ResMed VPAP II STA which did nothing for me- I might as well been sleeping with out a machine at all. I am so glad that wasn't the first BiPAP ST I was put on or I might not have ever gotten what relief I have and I honestly don't think I could have went on much longer without some sort of relief. I still have to take sleeping meds and am on provigil & ritalin during the day which I would give up in a heart beat if they could get my central apneas better under control.