Low Tolerance for CPAP

[Sleepyinalabama]

I've used CPAP for nearly three years but still have low tolerance for it. I'm not a wimp with this so don't tell me to tough it out and get on with it. After nearly three years I can either put on the CPAP and watch the clock tick off the hours until daylight or turn it off and fall asleep. Ive tried full mask, over the nose and nasal pillows from different makers. Nasal pillows is best , if you can call it that.

My sleep is complicated by Restless Legs Syndrome. I medicate this with Gabapentin which works ok. I've tried several different medications and Gabapentin does the best job.

An option which I reject is to dope myself up with enough sleep pills until I pass into a coma. When I have done this I pay the price with "zombiesm" until it's time to dope myself up again. I've been to three "sleep doctors" and stronger sleep medication is the best that they can advise.

There is a final rationale that I am working on. I understand that fifty percent of CPAP initiates throw in the towel. I think that I may be one of them. I fully understand the negative health effects of sleep apnea. But here's the kicker. I'm 84 years old. It will take a while for any bad result from apnea to get me and by then I'll probably cash out with being to ugly to live.

Finally, I've never written anything like this before. I'm not crying the blues. I am making a final attempt to find a solution to end the CPAP battle by sharing with you. Cheers.

[LSAT]

I've used CPAP for nearly three years but still have low tolerance for it. I'm not a wimp with this so don't tell me to tough it out and get on with it. After nearly three years I can either put on the CPAP and watch the clock tick off the hours until daylight or turn it off and fall asleep. Ive tried full mask, over the nose and nasal pillows from different makers. Nasal pillows is best , if you can call it that.

My sleep is complicated by Restless Legs Syndrome. I medicate this with Gabapentin which works ok. I've tried several different medications and Gabapentin does the best job.

An option which I reject is to dope myself up with enough sleep pills until I pass into a coma. When I have done this I pay the price with "zombiesm" until it's time to dope myself up again. I've been to three "sleep doctors" and stronger sleep medication is the best that they can advise.

There is a final rationale that I am working on. I understand that fifty percent of CPAP initiates throw in the towel. I think that I may be one of them. I fully understand the negative health effects of sleep apnea. But here's the kicker. I'm 84 years old. It will take a while for any bad result from apnea to get me and by then I'll probably cash out with being to ugly to live.

Finally, I've never written anything like this before. I'm not crying the blues. I am making a final attempt to find a solution to end the CPAP battle by sharing with you. Cheers.

I think that in most cases...that is what we would tell you. I'm sure that your doctor tells you the same thing. If you want to give us some details as to your equipment, your pressures and your sleep study diagnosis...maybe we can be of some help. However...what ever we tell you will be accompanied by..."use the machine."

[Sleepyinalabama]

ResMed S9 with humidifier
AirFit P10
Pressure 9

I do not have the original sleep study. I was told the rate of apneas was very high to the extent that REM was simply not present enough to measure.

My last sleep dr. report was that apneas are low and measurement is acceptable.

I need to be clear I am not seeking to avoid using CPAP. After trying a lot of things, i am seeking a way(s) to continue using it.

I need a little help here. Could you comment further on what you mean by "that is what we would tell you".

I am very greatful for your response. Thank you.

[Julie]

It would be a huge help to know all your equipment (not just the btand name plse), settings, problems you've had, etc. There are some really knowledgable and experienced people here to help, but we need something to work with. Good for you for continuing to try - don't give up til you've at least heard what we might help with. Doctors are dorks - knowledgable maybe about science but not very good with equipment etc!

[Pugsy]

Exactly which model S9 machine? The rest of the model name should be on the top of the machine.
Choices might be Escape, Escape Auto, Elite, AutoSet...and some other high end models that I doubt you would have with just a pressure of 9.

Exactly what is the problem...why are you not using it? Is it the inability to fall asleep with the mask and machine on but you fall asleep easily otherwise? Or do you have trouble falling asleep even without the mask and machine on?
If it's just with the mask and machine...any idea why? Is it mask comfort? Noise?
Do you simply never fall asleep with it or do you fall asleep and then wake up only to take it off?

We try to help people figure out what is causing the problem and how to try to fix the problem but first we have to know what the problem is. So the more information we can get the better the chances are of maybe fixing the problem.

If you have trouble falling asleep...even without the mask and machine....do you take any medications? If so what? Maybe one of your meds has a side effect of affecting the ability to fall asleep or stay asleep.

Knowing which model you are using...enables us to know if you have a machine that gathers data to see if your therapy is even optimal or not.

So first we need to know more information as to exactly what difficulties you are having.

[D.H.]

ResMed S9 with humidifier
AirFit P10
Pressure 9

I do not have the original sleep study. I was told the rate of apneas was very high to the extent that REM was simply not present enough to measure.

My last sleep dr. report was that apneas are low and measurement is acceptable.

I need to be clear I am not seeking to avoid using CPAP. After trying a lot of things, i am seeking a way(s) to continue using it.

I need a little help here. Could you comment further on what you mean by "that is what we would tell you".

I am very grateful for your response. Thank you.

Please also add this information to your profile. Most versions of the ResMed S9 (maybe all) support data collection. It would be helpful if you look at the data on SleepyHead or some other software. You will be able to tell how well your Apnea is controlled. Based on that, you can adjust your therapy. You're supposed to get a new prescription from the doctor to change your pressure, but that is not enforceable.

[Pugsy]

Please also add this information to your profile.

There is no profile unless OP registers and logs in. Useless to tell an unlogged in person to fix their profile.
If you want to help...suggest they register and then log in and then add their equipment to their profile...
That would be helpful.

He may have registered but he isn't logged in. He won't see any profile to edit until he logs in.

Most versions of the ResMed S9 (maybe all) support data collection

No "most" versions of the S9 don't necessarily support data. The S9 Escape is a brick...the S9 Escape Auto is a half assed brick with AHI (no category breakdown) and no leak data at all.

Maybe you need to read up on which machines offer data collection and those that don't.
In this case the S9
https://sleep.tnet.com/cmd.class?class=s9

Or maybe expand your knowledge base with the other brands and models.
https://sleep.tnet.com/cmd

[Jimmycrackhorn]

As far as the restless leg here's an interesting fact.

I was getting it BAD every night.

But then I noticed something after I got 2 different mattresses - 1 firmer and one softer. The SOFTER one seemed to be the one that kicked up my restless leg WAY MORE than when I'd lie on the firm mattress. Also there's a time window. It only happens really in the evening, usually only when I'm trying to go to sleep.

If I wake up in the middle of the night and switch to the softer mattress it doesn't happen.

Also I started taking a little iron supplement nightly and it seems to help. You gotta be careful with the iron though.

I'd check to see if it's your mattress doing something weird to your body. Like I said. It's weird how I can meditate on the soft mattress for an hour or more during the day and do into light sleep but no restless leg but once it hits 10pm here it comes.

[palerider]

Most versions of the ResMed S9 (maybe all) support data collection

No "most" versions of the S9 don't necessarily support data. The S9 Escape is a brick...the S9 Escape Auto is a half assed brick with AHI (no category breakdown) and no leak data at all.

Maybe you need to read up on which machines offer data collection and those that don't.
In this case the S9
https://sleep.tnet.com/cmd.class?class=s9

Or maybe expand your knowledge base with the other brands and models.
https://sleep.tnet.com/cmd

best advice would be for the person you're talking to to just shut up.

[Goofproof]

As far as the restless leg here's an interesting fact.

I was getting it BAD every night.

But then I noticed something after I got 2 different mattresses - 1 firmer and one softer. The SOFTER one seemed to be the one that kicked up my restless leg WAY MORE than when I'd lie on the firm mattress. Also there's a time window. It only happens really in the evening, usually only when I'm trying to go to sleep.

If I wake up in the middle of the night and switch to the softer mattress it doesn't happen.

Also I started taking a little iron supplement nightly and it seems to help. You gotta be careful with the iron though.

I'd check to see if it's your mattress doing something weird to your body. Like I said. It's weird how I can meditate on the soft mattress for an hour or more during the day and do into light sleep but no restless leg but once it hits 10pm here it comes.

Doesn't it wake you us changing the mattress every nite in the middle of the nite? Jim

[Pugsy]

best advice would be for the person you're talking to to just shut up.

I know, I know. I was just hoping a little "education" might work. Chances of it happening are slim and none but thought I would try. I figure he isn't going to shut up...that's already been tried....maybe if I swung a big enough 2 X 4 he would take the time to think before he types and at least type something remotely useful instead of confusing.

[kteague]

I'd like to suggest that you follow the advice of the good folks here who are ready to help you assure that your cpap treatment is optimized. It may be there are setting changes that could improve your experience and thus help with the difficulty sleeping. For me it was increasing to a starting pressure that was adequate. With too low a starting pressure (for me it was the ramp) my brain stayed on high alert because of the sensation of near suffocation. Maybe you'll find a tweak that helps you. It may be that your CPAP isn't the sole culprit of your sleep issues. You mentioned restless legs. When the RLS is accompanied by periodic limb movements, sometimes the better the OSA is treated (thus sleeping better), the more active the legs get and then worsen the sleep, but the CPAP gets the blame for the worsened sleep. When my RLS and PLMD were very active, I had a hard time tolerating my mask. My nerves were on edge and just having it touch my face was maddening. The increased sensitivity added a layer of complexity to adjusting to CPAP. All that said, I'm a big advocate of the importance of separating the issues and letting CPAP treatment stand on its own merit. Not an easy task, I know. If you end up optimizing your CPAP treatment and still have sleep issues, we can talk more. Have you already asseessed any meds to see if you're on something that could be contributing to the problem?

[chunkyfrog]

Have you ever heard of behavioral conditioning for insomnia?
This is a non-drug solution that involves some dedication;
but I suspect you are just tough enough for it to work.

[palerider]

best advice would be for the person you're talking to to just shut up.

I know, I know. I was just hoping a little "education" might work. Chances of it happening are slim and none but thought I would try. I figure he isn't going to shut up...that's already been tried....maybe if I swung a big enough 2 X 4 he would take the time to think before he types and at least type something remotely useful instead of confusing.

hope springs eternal, but I ain't givin myself no central apneas about it

[Marsengill]

I may be confusing the issue. I am posting as the originator but had to rejoin to get info you requested in my profile. The best I can do here is try to dig through for questions that you have asked and go from there.

ResMed S9. AutoSet

Humidifier. ResMed H5i. .??

AirFit P10. Of course it has a harness

Pressure Setting is 9. (This setting has been evaluated several times.

I do not have a software program.

When my legs are restless it seems that the mask is very difficult to tolerate. So I don't know if it is the chicken or the egg thing.

I have discussed my medications with my primary physician. He doesn't think any are applicable to my sleeping problem.

Thank you for the non medication suggestions. That's something to think about.

Thank you for your interest in me.