Not adjusting to CPAP, TMJD and sinus problems, seeking advice

Hi folks! First post here. I'd like some advice and, honestly, some support from folks who understand what I'm going through. None of my friends have sleep apnea, TMJD, or the chronic pain I get. This board's activity fills me with hope and I'm super grateful in advance for any responses, help, and just general sympathy.

I am a 35yo male, skinny. Docs say I have sleep apnea because my jaw is small and my tongue is large. Dentist recently says when I had braces, I had 4 molars removed, which shrank my jaw and gave my mouth no room for my tongue.

I sleep between 30 min - 4 hours nightly with CPAP, have had it for two months now. I take it off during sleep. My sinuses inflame (no mucus) after wearing the mask to the point where it's hard to breathe. Taking the mask off quickly resolves this. I've tried humidity 0, 2, 5, and 7. I've tried temp levels at 74, 70, off. Haven't found a clear winner. One thing I don't get is I wore this same mask 7 hours straight during my last in-hospital sleep study. I think my mask might be pinching my sinuses, I have a small nose and little room to breathe out of as-is.

CPAP is uncomfortable. Wearing it forces my jaw forward a bit, I can notice this just wearing it while awake. This is a pain problem for me because of my TMJD. Sleeping on my side is also painful on my jaw. Sleeping on my back makes my apnea worse. I figure I should try either a FFM or nasal pillows. Insurance will only let me pick one, not sure which I'll do, probably FFM. I've worn a FFM before it's the most uncomfortable thing,

Lots more to say but the short of it is I am evaluating jaw surgery to move my jaw forward, braces to open my jaw up with or without accompanying surgery, and sinus surgery for my deviated septum, tonsil removal, and uvuloplasty. I don't want any of that, and because I need 3 separate providers for these appraisals it's hard to tell which will be the most effective. I'm leaning towards braces and have a promising orthodontist appraisal coming up in two weeks. I'm in a weird catch 22 situation where I can't sleep on my side because of pain, I can't sleep on my back because of sleep apnea, and CPAP isn't stable yet.

The few nights of sleep I've had with 3-4 hours of CPAP were *wonderful*. I'm hopeful but there's a long road ahead of me and I'm scared. I want CPAP to work better for me right now so I can have some temporary relief. It's hard for me to work right now because of my apnea and my pain.

I don't know if any of y'all talk about the mental aspect of this much but the resilience required to deal with this crap is incredible and some nights it completely and utterly breaks me. Most days I am filled with hope. I'm young and I have many threads to follow still before I can say this is as good as it will ever get.

Anyway. If y'all need more info please ask. I do have sleepyhead but don't know how to evaluate the data yet. I figure I should get a full night of sleep first w/ CPAP but I don't know. Any help is appreciated. Very nice to meet you all.

EDIT: Just to make my symptoms clear. 1. regular fatigue and exhaustion 2. pain. Worse sleep seems to = worse pain. I suspect that on strong apnea nights I get sleep-related headaches because sometimes the pain isn't jaw pain and caffeine helps this type of pain. Can talk about that more if needed.

One more thing: AHI with the mask on, the few hours I sleep, is around 2-5 still, mostly centrals. Last night's reading from my machine is Pressure 8.0, worn 3 hours, AHI 5.1, total AHI 4.8, central AHI 4.5. I've tried APAP 8-20 before and the machine tended to settle on ~10.5. I'm reading up on how to interpret sleepyhead results. Lots of good information here it's just a lot to sift through..

Here's last night's data. It's almost all centrals didn't expect that. Was actually a "decent" night of sleep, I've had worse. I don't know if it's giving me full daily data, this looks split between two days. I sleep odd hours, 6am - 2pm lately.

ResMed machines start a new reporting session 24 hour period at 12 PM or Noon per the machine's clock.
When you sleep past noon you may end up with your data being split.

You need to learn how to zoom in and see if those centrals are real (as in you were asleep) or not real (as in awake or post arousal breathing flagged by mistake).
Go here and read and watch all the videos especially the last one.
http://freecpapadvice.com/sleepyhead-free-software

A few centrals here and there that are real...entirely normal to have a few. No need to panic.
I am betting that the bulk of your flagged centrals are likely related to arousals and not real.

Just thinking through your situation, and that maybe a little bit of this and a little bit of that might make enough compiled effect for you to see some progress. It might not be one big fix.

First I encourage you to work towards teaching your tongue to stay suction-sealed to the roof of your mouth. Mastering this technique enabled me to back sleep again. You likely will still need to support your jaw somehow to keep it from going slack and falling backward and maybe breaking the seal. Have you tried sleeping on a wedge? Maybe that would alter how the tissues in your throat collapse in a beneficial way. You could experiment with sleeping on an incline by folding a comforter and placing it across the head of your bed between the mattress and box springs. That way you control the thickness used as you feel the need. I found that more comfortable than a wedge. Ideally one's CPAP settings could be adjusted to accomodate back sleeping.

As far as your jaw pain, how much have you played around with pillows to try to make side sleeping workable? If pressure on your TMJ by the pillow is painful, have you tried scooping out a bit of a foam pillow right where the joint is to give some pressure relief?

As far as masks, the nasal pillows masks will put zero pressure on your jaw, as long as they would work with your other issues.

Good luck figuring ways to best help yourself. Think out-of-the-box about each issue you face, what needs fixed, and ways to fix it.

I had the jaw surgery as a teenager. They cut it, moved it forward, put pins in and then wired it shut for 6 weeks. Not only was it a terrible experience but today I have sleep apnea and use a bilevel machine. Just fyi it didn't help that issue.

Re-reading what I wrote again, maybe I should have picked a more focused question to start! Well thanks for the responses all.

Thanks Pugsy that makes sense. I will watch the videos later but for now I wouldn't be surprised if either jaw pain or sinus congestion is causing sleep arousals. I have read you don't recommend pressure changes lightly but I am going to try 6 tonight. Mainly want to know if my sinuses will handle less pressure better. My titration study set me at 8, so I trust this number, but we'll see what happens.

Cynmatthes wrote: ↑

Mon Feb 11, 2019 12:12 am

I had the jaw surgery as a teenager. They cut it, moved it forward, put pins in and then wired it shut for 6 weeks. Not only was it a terrible experience but today I have sleep apnea and use a bilevel machine. Just fyi it didn't help that issue.

Wow. As a teen? I'm so sorry to hear that. My oral surgeon and ENT both say this surgery is a viable option for me because it apparently has a high success rate at resolving my type of sleep apnea, obstructive with a small mouth and small jaw. It's also drastic and permanent and is a last resort for me.

kteague wrote: ↑

Mon Feb 11, 2019 12:07 am

Just thinking through your situation, and that maybe a little bit of this and a little bit of that might make enough compiled effect for you to see some progress. It might not be one big fix.

First I encourage you to work towards teaching your tongue to stay suction-sealed to the roof of your mouth. Mastering this technique enabled me to back sleep again. You likely will still need to support your jaw somehow to keep it from going slack and falling backward and maybe breaking the seal. Have you tried sleeping on a wedge? Maybe that would alter how the tissues in your throat collapse in a beneficial way. You could experiment with sleeping on an incline by folding a comforter and placing it across the head of your bed between the mattress and box springs. That way you control the thickness used as you feel the need. I found that more comfortable than a wedge. Ideally one's CPAP settings could be adjusted to accomodate back sleeping.

As far as your jaw pain, how much have you played around with pillows to try to make side sleeping workable? If pressure on your TMJ by the pillow is painful, have you tried scooping out a bit of a foam pillow right where the joint is to give some pressure relief?

As far as masks, the nasal pillows masks will put zero pressure on your jaw, as long as they would work with your other issues.

Good luck figuring ways to best help yourself. Think out-of-the-box about each issue you face, what needs fixed, and ways to fix it.

Wow can you elaborate more on tongue on roof thing, or point me to a useful resource?

About your questions: haven't slept on a wedge yet but I have tried propping my head and shoulders up with ample pillows. I did this last week and it helped me sleep but after a week sleeping like that it wasn't helping my pain anymore. Don't know why yet. I like the incline idea, clever, will try it. I've definitely wished I could have a pillow with a TMJ-sized hole in it! Or a bit bigger. Wouldn't anyone likely roll off of that hole in the middle of the night? Am now thinking of how I can mutilate my pillows to my advantage now though ... will let you know if I try it.

The nasal mask itself doesn't hurt my jaw thankfully. My sinuses just seem to hate it. Still working through options on this one, have tried many things, will maybe save this for its own post later.

I agree there's no One True Cure for my situation. This condition has given me some major problem solving skills at least!

Per the chart you posted, you are running the machine is straight CPAP mode with a fixed pressure of 8. Is there a reason that you are not using it in auto mode? You have a great machine, but you have it restricted from adjusting pressure during your sleep.

sleepy-programmer wrote: ↑

Mon Feb 11, 2019 6:53 am

Re-reading what I wrote again, maybe I should have picked a more focused question to start! Well thanks for the responses all.

Thanks Pugsy that makes sense. I will watch the videos later but for now I wouldn't be surprised if either jaw pain or sinus congestion is causing sleep arousals. I have read you don't recommend pressure changes lightly but I am going to try 6 tonight. Mainly want to know if my sinuses will handle less pressure better. My titration study set me at 8, so I trust this number, but we'll see what happens.

Cynmatthes wrote: ↑

Mon Feb 11, 2019 12:12 am

I had the jaw surgery as a teenager. They cut it, moved it forward, put pins in and then wired it shut for 6 weeks. Not only was it a terrible experience but today I have sleep apnea and use a bilevel machine. Just fyi it didn't help that issue.

Wow. As a teen? I'm so sorry to hear that. My oral surgeon and ENT both say this surgery is a viable option for me because it apparently has a high success rate at resolving my type of sleep apnea, obstructive with a small mouth and small jaw. It's also drastic and permanent and is a last resort for me.

Yes. My parents were told it would keep me from having problems later on. Ha! Tell that to my jaw when the weather is bad.

According to my sleep report I have "very sever obstructive apnea with an apnea/hypopnea index of 141.3 events per hour" My understanding is that the jaw surgery doesn't keep the soft tissue from collapsing which is what causes the apnea. But I am sure the experts will be around to advise you. I am fairly new at this myself. The only reason I mention it is because many doctors and DME providers will give you bs. Good luck on your journey with this stuff. Hopefully the experts here will help you get your machine dialed in so that you can avoid surgery.

Thumper68 wrote: ↑

Mon Feb 11, 2019 7:59 am

Per the chart you posted, you are running the machine is straight CPAP mode with a fixed pressure of 8. Is there a reason that you are not using it in auto mode? You have a great machine, but you have it restricted from adjusting pressure during your sleep.

It's the setting my doctor requested after my last titration study. I will ask her about this, thanks.

Cynmatthes wrote: ↑

Mon Feb 11, 2019 9:12 am

sleepy-programmer wrote: ↑

Mon Feb 11, 2019 6:53 am

Re-reading what I wrote again, maybe I should have picked a more focused question to start! Well thanks for the responses all.

Thanks Pugsy that makes sense. I will watch the videos later but for now I wouldn't be surprised if either jaw pain or sinus congestion is causing sleep arousals. I have read you don't recommend pressure changes lightly but I am going to try 6 tonight. Mainly want to know if my sinuses will handle less pressure better. My titration study set me at 8, so I trust this number, but we'll see what happens.

Cynmatthes wrote: ↑

Mon Feb 11, 2019 12:12 am

I had the jaw surgery as a teenager. They cut it, moved it forward, put pins in and then wired it shut for 6 weeks. Not only was it a terrible experience but today I have sleep apnea and use a bilevel machine. Just fyi it didn't help that issue.

Wow. As a teen? I'm so sorry to hear that. My oral surgeon and ENT both say this surgery is a viable option for me because it apparently has a high success rate at resolving my type of sleep apnea, obstructive with a small mouth and small jaw. It's also drastic and permanent and is a last resort for me.

Yes. My parents were told it would keep me from having problems later on. Ha! Tell that to my jaw when the weather is bad.

According to my sleep report I have "very sever obstructive apnea with an apnea/hypopnea index of 141.3 events per hour" My understanding is that the jaw surgery doesn't keep the soft tissue from collapsing which is what causes the apnea. But I am sure the experts will be around to advise you. I am fairly new at this myself. The only reason I mention it is because many doctors and DME providers will give you bs. Good luck on your journey with this stuff. Hopefully the experts here will help you get your machine dialed in so that you can avoid surgery.

I understand and appreciate what you said. I started fighting hard for myself a couple years ago because I had to. Educating myself and vetting doctor opinions. The number of dentists and orthodontists here in Chicago alone that have different approaches to TMJD treatment is astounding. I had to throw my last orthodontist away because he said jaw realignment surgery was the only way to cure my pain condition. Every other dentist and ortho tells me to run far away from that kind of surgery!

My apnea is thankfully very mild, I think. In my case it's one of a few situations that is cycling out of control. Jaw hurts, can't sleep -> can't sleep, jaw hurts / can't heal (I still don't know *why* my jaw is this way) -> repeat. All I know is that the few nights of sleep I got with 3-4 hours of CPAP have been more restful than most of my usual nights.

Pugsy wrote: ↑

Sun Feb 10, 2019 10:49 pm

ResMed machines start a new reporting session 24 hour period at 12 PM or Noon per the machine's clock.
When you sleep past noon you may end up with your data being split.

You need to learn how to zoom in and see if those centrals are real (as in you were asleep) or not real (as in awake or post arousal breathing flagged by mistake).
Go here and read and watch all the videos especially the last one.
http://freecpapadvice.com/sleepyhead-free-software

A few centrals here and there that are real...entirely normal to have a few. No need to panic.
I am betting that the bulk of your flagged centrals are likely related to arousals and not real.

I've still more videos to watch but about those centrals. I suspect you are right Pugsy. Zoom-in from last night's sleep: Zoom-in of my original screenshot: I decided to go "crazy" and use CPAP pressure 5 last night, surely that's so low. My obstructive AHI last night was 0.13. Unsure yet what to think about this. Am tempted to try APAP 4.0 - 8.0 and see what happens. I have done APAP 8.0 - 20.0 before and the machine would give me pressure up to 12, average of 10. I can post screenshots of those if wanted. They have similar sleep arousal "central apnea" events.

sleepy-programmer wrote: ↑

Mon Feb 11, 2019 7:00 am

Wow can you elaborate more on tongue on roof thing, or point me to a useful resource?

Place your tongue against the roof of your mouth with the tip of your tongue just behind the back of your top front teeth. Use a sucking motion to give a suction seal. I practiced doing this all the time and it has become my default tongue position even when awake. Just don't do like I did and get too zealous with the suction. I ended up with hickies on the roof of my mouth - ouch!

Oh, about the pillow. Get the cheapest foam pillow you can find and play around with cutting it to best suit you. If it doesn't work, not a big loss. If it does - Yaaay!

kteague wrote: ↑

Mon Feb 11, 2019 11:58 pm

sleepy-programmer wrote: ↑

Mon Feb 11, 2019 7:00 am

Wow can you elaborate more on tongue on roof thing, or point me to a useful resource?

Place your tongue against the roof of your mouth with the tip of your tongue just behind the back of your top front teeth. Use a sucking motion to give a suction seal. I practiced doing this all the time and it has become my default tongue position even when awake. Just don't do like I did and get too zealous with the suction. I ended up with hickies on the roof of my mouth - ouch!

Oh, about the pillow. Get the cheapest foam pillow you can find and play around with cutting it to best suit you. If it doesn't work, not a big loss. If it does - Yaaay!

Huh interesting. There is not enough room for me to do this. Between the size of my upper teeth, the size of my upper gums behind the front teeth, and the size of my tongue, there's just not enough room to rest comfortably. I wonder if this is part of what my dentist was thinking about, referring me to an orthodontist to evaluate me for braces and opening my mouth up? I'll have to ask. But unless I'm missing something this isn't possible for me to do right now.