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Hi, I have had sleep disordered breathing all my life (44 years old) and was diagnosed approx 3 years ago. I have had multiple surgeries and have tried everything under the sun (it feels like) and I have some days where I feel 100% amazing but I can't get any consistency.

I tried CPAP first for like 7 months. I'm sure I made tons of mistakes but never felt better at all. 0% difference. Only when I added MAD/OAT with the CPAP did I get any improvement and that first day I tried it I felt amazing! I thought I had solved my problem. Over the last 3 years I find that the tongue bulb / tongue retainer works better than the MAD/OAT so I use that with a retainer so my teeth don't move. But I have to have the CPAP too. CPAP alone doesn't work nor does the tongue retainer. I will have amazing days but can't get consistent results. It feels like when my sleep pressure increases because of a few crappy nights then if conditions are decent I might get a great night. I have tried not using the tongue bulb and just taping my mouth (I do get leakage some nights) but I can't ever seem to get a good night's sleep without that tongue having something keeping it forward.

To say that this is debilitating for me is an understatement. I have been basically unable to work more than part time for about a decade. Believe me, I am willing to do anything to fix this problem.

When CPAP didn't work for me I thought well I just need to clear up the obstructions. I've had maxillomandibular advancement surgery, UPPP, tongue radiofrequency ablation, an epiglottis surgery. I know there are probably several anti surgery people on this website, please don't chastise me, I was/am just so incredibly desperate to get better.

I thought I would try to eliminate obstructions and try no CPAP, so I figured out a way to clamp my tongue to prevent it falling back and still be able to breathe out of my mouth. So I figured there couldn't be any other possible obstructions between my airway and my lungs. So I tried sleeping this way with my nose plugged to force mouth breathing and no CPAP and I actually can sleep decent that way, but after about 2 days of this I started getting INSANE anxiety. And my oxygen curve was not horrible but it was lower than on CPAP. One thing that I haven't tried yet is an oral only mask. I think I've figured out a way that might work (keeping my tongue out of the way and still getting the CPAP through the mouth). My purpose here would be to see if I eliminate the nose and pharynx if things improve.

If I sleep with just straight CPAP (I know some say that BiPap is unhelpful IE the VCOM people I will call them) I get a fair amount of flow limitations. I'm not really sure where those limitations can be coming from, my best guess is the pharynx despite UPPP, but when I use BiPap pressures of 10.4/6 the flow limitations tend to get very low and generally I feel better.

But my inspiration times are all over the place. I don't understand it. For instance one inspiration will be like 1 seconds and the next one will be the full 4 seconds (I assume that it gets cut off by the machine) and then 1 second and then 4 seconds, and it is crazy. No stability to it. If you look at my oscar data for the whole night and try to draw "stability lines" over the top and bottom the inspiration top tends to be fairly stable (which I guess means that the flow rate is similar from one breath to the next) but my exhale looks like the exhale gets chopped off a fair amount. So I thought that that was evidence of palatal prolapse preventing me from exhaling which could also explain leakage out of my mouth because the air has nowhere else to go. But I got the AlaxoStent and I can't really notice any improvement. The Alaxostent is a lot flimsier than I would have imagined, seems like the slightest force would collapse it.

I think that the BiPap helps me during REM sleep to get oxygenated because it appears that during REM sleep my minute ventilation and tidal volumes get really low. I have tried lowering my IPAP little by little and it appears that at some point my minute ventilation gets too low and I will get a lot of nightmares. Very stressful dreams. And if I raise the IPAP the nightmares tend to go away, even though it doesn't solve all problems.

If anyone can help me, I will be eternally, and I mean eternally grateful. I would happily give a reward. Or if noone can help me but knows of a resource or Doctor etc that might be able to help me, I am not afraid to spend money or try new things to try to get some stable good rest.

One last thing that may be helpful is that I have 4 sons and all of them appear to have my same basic problem, 2 of them appear to have the same basic severity and the other has it but appears to be a bit less. Basically long story short I have been using EERS on them and that seems to stabilize their NREM sleep quite a bit but not their REM sleep. So I have been trying it on myself as well, but apparently EERS doesn't work as well when you using BIPAP because the pressure differential blows off the carbon dioxide which is exactly what we want to keep so the body stays motivated to keep breathing. My oldest was officially diagnosed with OSA and I haven't bothered with the others because everything seems the same (symptoms etc) and the CPAP data is similar for them all.

My breathing rate (and theirs) tends to be extremely slow. Almost always my average will be 10 and often will be about 8. By using EERS I have been able to increase their breathing rate which definitely stabilizes their oxygen during NREM.

So there appears to be something besides anatomy / obstructions that makes my breathing during sleep chaotic. Either my carbon dioxide reserve is low and so I have no desire to breathe during NREM but that doesn't explain my REM troubles. I've looked a little into REM hypoxia and wonder if my breathing rate and depth are just too low (even without obstructions) during REM without the IPAP pressures inflating my baloons / lugns.

I doubt Inspire would help me and don't even know if I could find anyone that would do it for me. It seems like if the tongue bulb is keeping my tongue forward that would be even better than Inspire which doesn't keep the tongue forward during expiration. I saw another implant that basically keeps your breathing rate steady by stimulating the diaphragm. Don't know if that might help but looks invasive. If I knew it would solve the problem I would do it in a heartbeat though.

If-you-want-CPAP-help-PLEASE-READ-BEFORE-POSTING

We need to see what machine and mask you're using, and what the machine reports.

An alternative to OSCAR is SleepHQ

As ozij says, we need more information before we can help you.

1) What machine are you using and what are the settings? What mask are you using?

2) Post some data. Either post the data in If-you-want-CPAP-help-PLEASE-READ-BEFORE-POSTING or use SleepHQ and post a link to the data.

3) What other health problems are you dealing with? And do you take medication for any of them? Many medications affect sleep, and its important to know whether the medications you take on a regular basis might be affecting the quality of your sleep.

4) Have you got the full summary report from your last sleep study? Or from any of your sons' sleep studies? If so, posting that (after blacking out the personal identifying information) is useful. Since you state that you are worried that you breath "too slowly" and that you are worried about blowing off too much CO2, it's important to ask: Do any of your sleep studies mention problems with central sleep apnea?

5) What does your sleep hygiene look like?

And keep this in mind: With all you are trying to do to fix your problems, it possible that anxiety over your sleep is making everything worse---i.e. the more you actively worry about your sleep, the harder it can be for your BiPAP/CPAP (and all the other stuff you are using) to help you get a good night's sleep.

In other words, BiPAP (and all the rest of the stuff you seem to be doing) fix sleep disordered breathing. They don't fix bad sleep.

Now a few other comments tied to what you've written:

UARS_BE_GONE wrote: ↑

Sat Mar 01, 2025 10:17 pm

I have some days where I feel 100% amazing but I can't get any consistency.

This may point to a problem with bad sleep rather than a problem with inconsistently treated sleep apnea. Or it could be that the settings on your machine are not yet optimal. Without data, all we can do is guess.

It would help us help you if you posted the data from a night where you felt 100% amazing the next day as well as a couple of nights where you felt pretty bad the next day.

It feels like when my sleep pressure increases because of a few crappy nights then if conditions are decent I might get a great night.

Not sure what you mean here: Every night when you first turn the machine on, it starts at your minimum pressure setting(s). In other words, the machine doesn't remember from night to night what it did (in terms of pressure) on the previous nights and make adjustments.

I have tried not using the tongue bulb and just taping my mouth (I do get leakage some nights) but I can't ever seem to get a good night's sleep without that tongue having something keeping it forward.

How bad is the leakage?

And if you need something to keep the tongue forward to get a good night's sleep, then I'd say to just use the tongue bulb as long as it doesn't make it more difficult to get to sleep.

When CPAP didn't work for me I thought well I just need to clear up the obstructions. I've had maxillomandibular advancement surgery, UPPP, tongue radiofrequency ablation, an epiglottis surgery. I know there are probably several anti surgery people on this website, please don't chastise me, I was/am just so incredibly desperate to get better.

This is not chastising you for having the surgery. But the fact is sometimes these kinds of surgery do make it more difficult (but not impossible) to find optimal settings for CPAP/BiPAP therapy. So it may take more time than usual for you to figure out the best settings with our help.

I thought I would try to eliminate obstructions and try no CPAP, so I figured out a way to clamp my tongue to prevent it falling back and still be able to breathe out of my mouth. So I figured there couldn't be any other possible obstructions between my airway and my lungs.

So I tried sleeping this way with my nose plugged to force mouth breathing and no CPAP and I actually can sleep decent that way, but after about 2 days of this I started getting INSANE anxiety. And my oxygen curve was not horrible but it was lower than on CPAP. One thing that I haven't tried yet is an oral only mask. I think I've figured out a way that might work (keeping my tongue out of the way and still getting the CPAP through the mouth). My purpose here would be to see if I eliminate the nose and pharynx if things improve.

If I sleep with just straight CPAP (I know some say that BiPap is unhelpful IE the VCOM people I will call them) I get a fair amount of flow limitations. I'm not really sure where those limitations can be coming from, my best guess is the pharynx despite UPPP, but when I use BiPap pressures of 10.4/6 the flow limitations tend to get very low and generally I feel better.

Lots of things can cause the upper airway to collapse while sleeping.

Yes, one of those things is a tongue that falls backwards. Others are tissues that are addressed by some of the surgeries you have had. But sometimes the problem is just the muscles that are responsible for holding the airway open just relax too much during sleep, which can lead to the airway collapsing. Sometimes the problem can be that the airway itself is just smaller than it should be. (That's my basic problem.) People with mallampati scores of 3 and 4 are more likely to have sleep apnea than people with mallampati scores of 1 or 2 all other things being equal.

But my inspiration times are all over the place. I don't understand it. For instance one inspiration will be like 1 seconds and the next one will be the full 4 seconds (I assume that it gets cut off by the machine) and then 1 second and then 4 seconds, and it is crazy.

Three comments:

1) There are settings on BiPAPs that might indirectly affect the length of an "inspiration"---as in some people will sense that their inspirations are "cut short" if the machine prematurely switches from IPAP to EPAP. That's why we need to know the settings on the particular machine you are using.

2) When PS = IPAP - EPAP is too high, some people's breathing does become more unstable. (This can be related to blowing off too much CO2.). That's why we need to know the settings on the particular machine you are using.

2) Unless you have some kind of additional data that correlates well with what you call the inspiration instability, it may be that the more you worry about this, the less well you sleep---simply because over worrying about sleep is a good way to ruin the quality of your sleep.

I think that the BiPap helps me during REM sleep to get oxygenated because it appears that during REM sleep my minute ventilation and tidal volumes get really low. I have tried lowering my IPAP little by little and it appears that at some point my minute ventilation gets too low and I will get a lot of nightmares. Very stressful dreams. And if I raise the IPAP the nightmares tend to go away, even though it doesn't solve all problems.

Unless you are monitoring your O2 levels, you won't have data to back up any of these ideas. Again, worrying excessively about tidal volume in the absence of data that backs up your hypothesis may be doing more to ruin your sleep than what's actually happening to your minute ventilation and tidal volumes. Also: If minute ventilation and tidal volume problems are a real issue in REM, then that should have been noted on the results of your sleep test(s).

So there appears to be something besides anatomy / obstructions that makes my breathing during sleep chaotic. Either my carbon dioxide reserve is low and so I have no desire to breathe during NREM but that doesn't explain my REM troubles. I've looked a little into REM hypoxia and wonder if my breathing rate and depth are just too low (even without obstructions) during REM without the IPAP pressures inflating my baloons / lugns.

Again: Did any of your sleep test(s) mention anything about central sleep apnea?

At this point, I'll also raise this question: Have you ever had an in-lab sleep test with the CPAP/BiPAP machine? In other words, have you had a titration study to determine the (starting guess for) the appropriate pressure(s) to use?

An in-lab titration test would also go a long way to determine whether CPAP/BiPAP is triggering an uncommon, but very real problem of treatment emergent central sleep apnea if central sleep apnea was not part of your original diagnosis. While treatment emergent central sleep apnea is not common, it is a real issue for a small minority of patients using CPAP/BiPAP. The usual treatment is first some cautious watching of what goes on since the problem can often resolve itself over the course of a few months of consistent use of the CPAP/BiPAP. But if the issue does not resolve, there's a more expensive machine that is designed to treat central sleep apnea that can also be used to both OSA and treatment emergent central sleep apnea.