Looking for a new, viable option for treatment of apnea.

[PeaceSleeper]

After working with a sleep lab in the geography where I live and work (Canada), the sleep medicine doctor (a few months ago) had his specialty license revoked permanently in the area of sleep medicine, his medical license suspended for a period of time, and will only be allowed to practice within his primary specialty of psychiatry if he returns to work in the medical field. Not the best situation.

Having undergone several sleep studies at the sleep lab that he owned, and having tried CPAP, BiPAP, and APAP machines, as well as every mask type manufactured, I am still unable to tolerate pressure therapy. Every night, when I do try to use my latest machine, an ICON apap, I end up pulling the mask off my face while I am asleep. This seems to happen consistently during REM, which predictably occurs at about 3:30 am, plus or minus 30 minutes most nights. When I am not on the APAP, I wake up reliably at 3:30 am, feeling short of breath most of the time, which takes about 2 hours to settle down from and return to sleep for about 30 minutes before it is time to go to work. I am the walking definition of sleep deprivation.

I have also tried to pursue use of a MAD to keep the airway open, even going to the extreme most recently of using it with a philadelphia style cervical collar. The collar serves to both maintain an improved posture for the airway, as well as keeping the mouth closed--works better than a chin strap. I have been to two different dental groups about MAD, but I have no insurance coverage for the full dental approach. I have tried the OTC MAD products, which do work to some degree, but the fit is not that good. I also tried combining the MAD with the APAP. This approach does keep the airway open in the best fashion I have experienced, but I cannot sleep with all of that hardware attached to my body. (MAD, cervical collar, nasal mask) But I breath better.

Short of cutting a hole in the trachea, has anyone found a modality of therapy that might work for someone like me who is very claustrophobic, has GERD, and does not tolerate pressure therapy?

My next step, with a new family doctor, is to go to a new sleep lab and start over--at least in terms of the new sleep medicine physician group. Maybe some of the folks on this excellent forum have some thoughts to share on next steps? Thanks for listening, as always.

[stienman]

Is it the pressure that's making you remove it, or the physical gear? A simple test to find out would be to change the settings of your machine to 5-10 and see how you respond. It won't provide as good a therapy as your current pressures, but it'll be better than nothing, and if you take it off you'll know it's the gear rather than the pressure.

If it's the gear, the issue seems to be taking it off in your sleep. This isn't uncommon, and people have devised a number of ways of dealing with it - for instance, making it so it's difficult enough to remove that you can't do it while asleep, or setting the machine to alarm when removed rather than shutting down silently. While you would end up waking up, it may be that you'd be able to fall back asleep more easily than your current gasping awake situation.

Also keep in mind that you may need to try many different types of masks. If you need a full face mask, for instance, it's worth trying a nasal pillow with a chin strap or soft cervical collar to keep your mouth closed, or looking into hybrid masks that are smaller than typical full face masks.

Lastly, note that some people do a lot better on bipap than cpap or apap.

There are a lot of variables involved, and it's hard to tell from your post why you don't tolerate pressure therapy. Perhaps you've already done all the above, but if not, keep pursuing it. The next step beyond what you've tried is surgery, and in most cases that's something to consider only after all other options have been exhausted.

[ChicagoGranny]

The sinus stuff hasn't changed much, still a lot of congestion which when using a nasal mask gets worse such that I pull the mask off while I am asleep.

every mask type manufactured

(MAD, cervical collar, nasal mask)

This caught my eye. Have you tried full face masks (FFMs)?

[robysue]

PeaceSleeper,

Taking the mask off in your sleep every night at 3:30 is NOT the same as being unable to tolerate pressure therapy (i.e. CPAP/APAP).

What I mean by that: Lots of people take the mask off in their sleep, particularly at the beginning. But they don't have any serious trouble directly tied to the pressure from the machine. For these folks, it's a matter of learning how to keep the mask on all night.

Important tips include:

• Use a small bit of tape to tape the mask onto your face. The idea is that this makes it both a bit uncomfortable and a bit harder to remove the mask, so you are more likely to wake up and realize what you are doing. And then you can consciously make the decision to NOT remove the mask when you go back to sleep.
• When you wake up in the middle of the night and the mask is not on, put the mask back on and then return to sleep.
• When you wake up in the middle of the night and the mask is on, don't allow yourself to take the mask off when you settle back down to go back to sleep.
• Try a different mask style; some masks are much more minimal than others. The Mirage nasal mask you have in your signature has a pretty big footprint. You might do better with a nasal pillows mask or a nasal or full face mask that does not have the forehead support piece.

You also list GERD as something you are dealing with. Do you have problems with aerophagia---i.e. air getting into your stomach and leading to uncomfortable bloating? If so, you need to deal with that as well.

[Wulfman...]

After working with a sleep lab in the geography where I live and work (Canada), the sleep medicine doctor (a few months ago) had his specialty license revoked permanently in the area of sleep medicine, his medical license suspended for a period of time, and will only be allowed to practice within his primary specialty of psychiatry if he returns to work in the medical field. Not the best situation.

Having undergone several sleep studies at the sleep lab that he owned, and having tried CPAP, BiPAP, and APAP machines, as well as every mask type manufactured, I am still unable to tolerate pressure therapy. Every night, when I do try to use my latest machine, an ICON apap, I end up pulling the mask off my face while I am asleep. This seems to happen consistently during REM, which predictably occurs at about 3:30 am, plus or minus 30 minutes most nights. When I am not on the APAP, I wake up reliably at 3:30 am, feeling short of breath most of the time, which takes about 2 hours to settle down from and return to sleep for about 30 minutes before it is time to go to work. I am the walking definition of sleep deprivation.

I have also tried to pursue use of a MAD to keep the airway open, even going to the extreme most recently of using it with a philadelphia style cervical collar. The collar serves to both maintain an improved posture for the airway, as well as keeping the mouth closed--works better than a chin strap. I have been to two different dental groups about MAD, but I have no insurance coverage for the full dental approach. I have tried the OTC MAD products, which do work to some degree, but the fit is not that good. I also tried combining the MAD with the APAP. This approach does keep the airway open in the best fashion I have experienced, but I cannot sleep with all of that hardware attached to my body. (MAD, cervical collar, nasal mask) But I breath better.

Short of cutting a hole in the trachea, has anyone found a modality of therapy that might work for someone like me who is very claustrophobic, has GERD, and does not tolerate pressure therapy?

My next step, with a new family doctor, is to go to a new sleep lab and start over--at least in terms of the new sleep medicine physician group. Maybe some of the folks on this excellent forum have some thoughts to share on next steps? Thanks for listening, as always.

Maybe you need to need to stop using a pressure range and try a straight pressure. Maybe it's the pressure changes that are disturbing your sleep and waking you up or causing you to pull your mask off.
If you're actually USING the software to monitor your therapy, you should be able to see some clues in those reports.
And, if you have GERD, that's probably generating Flow Limitations and driving up your pressures.

Additional Comments: APAP 10-14 cm, InfoSmart F&P software.

In any case, study your reports and look for clues.


Den

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