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

[jnk...]

. . . If considered early, there are options now that will help to improve the amount of room and possibly prevent sleep apnea if done while the person is still growing. They didn't know that back when it was considered normal to remove 4 teeth and them move the rest to align them nicely. . . .

I am certainly no expert, but I do not believe that to be true. Nothing short of breaking bone will actually make the mouth larger in a way that truly matters, whether in adulthood or as a child is growing. And I believe that the mouth is only one minor part of the equation for most. Even breaking bone merely expands one small part of the airway immediately behind the tongue and will not correct the anatomy of the rest of the airway that may disturb sleep.

Pulling teeth may not fix everything. But breaking bone may not fix everything either. And anatomical airway issues are not caused by either of those things. There are merely statistical associations because a person with a too-small mouth is also very likely to have a too-small airway in other locations as well.

"Fixing a smile" doesn't fix everything else, but it doesn't make anything else worse either. And I believe your words very much support that fact:

. . . I had the 4 teeth removed and braces. I also have a small chin, scalloped tongue, small mouth (dentists have to use the child size xray things), and I have narrow airways too. My mom never had braces, and at age 79, she still has teeth that don't fit properly in her mouth. Some of them are actually so badly aligned that they are more like a second row. She has sleep apnea too.

[dogsarelife]

. . . If considered early, there are options now that will

"Fixing a smile" doesn't fix everything else, but it doesn't make anything else worse either. And I believe your words very much support that fact:

. . . I had the 4 teeth removed and braces. I also have a small chin, scalloped tongue, small mouth (dentists have to use the child size xray things), and I have narrow airways too. My mom never had braces, and at age 79, she still has teeth that don't fit properly in her mouth. Some of them are actually so badly aligned that they are more like a second row. She has sleep apnea too.

Hi, as with all things medical..it's complicated. I do not believe we are disagreeing but that the devil is in the details.

first of all - In my personal case, my sleep doctor did an assessment of my face, jaw, tongue, nose, etc in my first appointment and he said that my teeth extraction in an attempt to make my smile better did make things worse for me, personally. :/

this paper shows that tooth loss is an independent risk factor for OSA - and that for each tooth that is lost or extracted, the risk of OSA increases by 2%, and there is increased prevalence of OSA by 36% with 9+ teeth out, and prevalence increases to 61% in the edentulous.

Having wisdom teeth out is, I believe, a known risk factor for UARS, but of course not everyone with their wisdom teeth out develops OSA.

https://www.ncbi.nlm.nih.gov/pubmed/26779902



I think what you both are trying to say - and I agree with - is that that sleep disordered breathing issues are not entirely caused by teeth extraction, and that it can be related to many factors as described in this article:

https://www.neso.org/managing-pediatric ... treatment/

Multiple factors contribute to the etiology of Pediatric SRBD. The most common etiologies are adeno-tonsillar hypertrophy and craniofacial abnormalities, including mandibular retrognathism, maxillary constriction, and dolichocephalic growth pattern. Earlier observations related to these etiologies were made by Edward H Angle in 1907, who noticed that Class II children had narrower upper airways than children with normal skeletal patterns.

So a minor quibble, is that I don't think one could go so far as to say that trying to make a smile better has no effects whatsoever, when each person is their own very complex set of craniofacial abnormalities.

All of this stuff is based off of discussions with my sleep doctor, and I recognize that I might be wrong though.

Mostly I was just trying to commiserate with sleepyprogrammer more than anything else and share experiences since our faces look so similar and we have a similar dental history.

[jnk...]

The smaller the mouth, the more teeth that will need to be removed. Thus the basis for the statistical association, which is unrelated to causation. Sadly, many docs don't understand the difference.

[sleepy-programmer]

My nasal mask is holding my jaw in a bad place. The pressure of having to keep a tight mouth seal is giving me TMJ issues, can’t even slack the jaw a little because it’ll fill my cheeks with air. I think I need a FFM. I’m about to try the F20 and the P10. It’s too bad the nasal N20 is soooo comfortable now. I actually love it. Ah well.

I found rhinocort is the only thing that helps my sinuses. I use that, a nasal dilator, humidifier in my room, and NO humidity from my machine. Seems to be the only combo that keeps my sinuses happy.

I’m also ordering a specialized TENS unit for the jaw. Hate dropping money on this but it’s the *only* thing that’s been easily effective for my TMJ pain. Current plan is to get out of this pain cycle I’m in, *then* hope good sleep starts to heal me. Wish me luck!

Hey SP, I'm sorry it turned out to be the case for you too that the N20 was holding your jaw in a bad place. I agree, the N20 is a great mask! I wish I could use it successfully too!

I hope you find some success with the Resmed P10 or the F20. Unfortunately with the P10, I had the same issue as the N20 - great mask, liked the minimalistic aspect, but the stenting of the airway positioned my jaw, bite, and tongue in a way that felt very unnatural to me. I hope that isn't the case for you, so I guess a heads up to watch out for that? I'm thinking about maybe trying the Bleep Dreamport next, but I wonder if nasal pillows aren't out for me :/

The F20 has been good for me - especially when I've been completely stopped up in my nose from a cold or flu. If you end up using the F20, my one tip is to make sure the top portion is between your eyebrows. Otherwise the air leaks into your eyes and that can wake you up. or, you know, watch the mask fitting video on youtube or on resmed, I'm sure they have decent instructions as well!

Do you know if you were a mouth breather as a kid or young adult? Some people seem to be able to make the transition to nasal breathing once they start xpap but I feel like it's harder for me with all the teeth that got pulled, because there's not enough room in my mouth for my tongue and my jaw to be positioned correctly. so I've quite often found myself mouth breathing with the F20 in the latter part of the night, I guess for REM sleep when the tongue and upper airway and jaw relax quite a bit.

So I guess I'm just sort of curious if that's the case with you too, or I'm imagining things?

Anyway, I hope the TENS unit gives you some pain relief for the TMJ issues - fingers, toes, legs, eyes crossed for good luck, because I know how much TMJ pain affected my ability to function. Best wishes for your sleep!

I do think nasal pillows are out for me, I tried two pairs. If my theory is right, it's the pressure of having to keep a mouth seal that's giving me jaw issues. I'd think only a FFM could resolve that for now.

I'm about to try the F20! Just having infuriating issues sizing online. I printed their size guide at full scale and they're making me think a Large is almost too small for me. What size are you using? I'm also going to try the Philips ComfortGel Blue FFM because it says it's good for facial hair. Wish me luck.

I'm not a mouth breather that I know of. My sleepyhead charts seem to confirm this. I take my mask off in the middle of the night but I think it's not from mouth breathing but from pain. We'll see what I do with a FFM.

[sleepy-programmer]

When there literally isn't enough room for the teeth because of a small mouth, what do you propose as a healthy solution? It is rarely a matter of mere cosmetics in those circumstances, right? Teeth need to align to function optimally, as I understand it from the MMA people's point of view. Surgically enlarging the mouth with MMA is much more drastic than simply pulling teeth. Jaw health and bite health are real considerations beyond "nice smiles." And using MMA for every kid with a small mouth, for OSA prevention, doesn't sound like a workable solution to me.

My understanding is that pulling the teeth during the process of braces doesn't *cause* sleep apnea, but doesn't help prevent it either. In other words, people (like me) who have a small mouth, not enough room for the full set of teeth, tend to have the physical anatomy that leads to sleep apnea. If considered early, there are options now that will help to improve the amount of room and possibly prevent sleep apnea if done while the person is still growing. They didn't know that back when it was considered normal to remove 4 teeth and them move the rest to align them nicely.

I had the 4 teeth removed and braces. I also have a small chin, scalloped tongue, small mouth (dentists have to use the child size xray things), and I have narrow airways too. My mom never had braces, and at age 79, she still has teeth that don't fit properly in her mouth. Some of them are actually so badly aligned that they are more like a second row. She has sleep apnea too.

This makes a lot of sense to me logically. I have been told my anatomy has all but guaranteed I would have sleep apnea issues. I just thinking having my teeth pulled didn't help. It didn't help my sleep apnea and it definitely didn't help my current TMJ issues.

[sleepy-programmer]

The smaller the mouth, the more teeth that will need to be removed. Thus the basis for the statistical association, which is unrelated to causation. Sadly, many docs don't understand the difference.

My dentist's point about my teeth being pulled wasn't that it caused less airway space. It gave less room for my tongue. But like our other friend said the devil's in the details. What's *actually* causing my airway to collapse when I sleep? Is it my tongue? My docs almost unanimously believe that breaking the jaw and moving it forward will cure my situation. But isn't this just one theory? I'm having difficulty finding who I should believe. I have the same reservations for your claims as I do with any doctor. Nothing against you. Or any of us with theories about why this is happening.

Overall it's absolutely, insanely frustrating. In the meanwhile I will just adjust to CPAP like other folks here decided to do.

[jnk...]

My dentist's point about my teeth being pulled wasn't that it caused less airway space. It gave less room for my tongue.

By definition, removing something cannot give less room.

My docs almost unanimously believe that breaking the jaw and moving it forward will cure my situation

I would respect a consensus that it is highly likely to "help," but "cure" is a strong word.

I have the same reservations for your claims as I do with any doctor. Nothing against you. Or any of us with theories about why this is happening.

I make no claims beyond a general observation as a personal opinion. For your specific case, you and your team's opinions are all that matter, since population evidence can't always inform unique situations anyway.

Overall it's absolutely, insanely frustrating. In the meanwhile I will just adjust to CPAP like other folks here decided to do.

Sorry about the frustration. I hope I have not contributed to that in any way. My comments were to the commenters. Hope that didn't
muddy things in this thread. It seems to me you are evaluating sensibly and focusing constructively on the benefits of CPAP.

Just my opinion as one guy on the Internet.

[dogsarelife]

I do think nasal pillows are out for me, I tried two pairs. If my theory is right, it's the pressure of having to keep a mouth seal that's giving me jaw issues. I'd think only a FFM could resolve that for now.

I'm about to try the F20! Just having infuriating issues sizing online. I printed their size guide at full scale and they're making me think a Large is almost too small for me. What size are you using? I'm also going to try the Philips ComfortGel Blue FFM because it says it's good for facial hair. Wish me luck.

Rats, sorry about the Resmed P10 not working out.

For the Resmed F20 I went into the DME to try cushion sizes and ended up with a medium and I'm thinking about switching to a large. When I started out I used the AirTouch F20- the memory foam lining - because I was frustrated with silicone leaks and skin irritation at that point and just needed a break for my mental health. might be good for a beard? It's more $$ if you use the Air Touch F20 long term, but since I was trialing the mask from the DME under the 30 day return policy, then I just returned the memory foam F20 just before the 30 days was up before switching back to the silicone AirFit F20.

And good luck with the Philips ComfortGel! I would be interested to try that.

I know jnk has their theories about tooth extraction for the general population, but what it feels like for me, as I lie down with the P10 and N20 at their proper pressures, is that my bite and jaw are thrust forward to one spot but then my brain is confused by the weird bite and it also hurts. Does that sound familiar SP?

and my tongue mashes against both top teeth or tries to find a gap to push through or it feels as though my tongue wants to push my front teeth out. I don't know if I'm explaining it right. I did have this problem before I had braces - my two front teeth stuck out quite a bit- but it got worse after I had braces and my tongue I think is trying to push my front teeth out again but has even less room to go and so I used to choke on my tongue pre-xpap.

The FFM isn't perfect of course - I still have the issue sometimes where my bite isn't the most comfortable with the FFM but to a lesser extent, but what works for me with the FFM is that if for whatever reason my brain decides that holding my jaw in one position is too uncomfortable, it signals my mouth to switch to wide open mouth breathing. Not ideal but it has resulted in better sleep/less wakeups even though the resulting AHI is a little higher because I'm actually staying asleep.


SP - I read this very interesting paper on MMA surgery, looking at AHI outcomes and it may be of interest to you, looking at results from 0-4 years (immediate term), 4-8 years (defined as long term) and 8+ years (very long term) out from surgery:

https://www.ncbi.nlm.nih.gov/pubmed/30598047

A total of 445 studies were screened, and 6 met criteria (120 patients). Thirty-one patients showed a reduction in apnea-hypopnea index (AHI) from a mean 48.3 events/h (95% CI, 42.1-54.5) pre-MMA to 8.4 (95% CI 5.6, 11.2) in the intermediate term. Fifty-four patients showed a reduction in AHI from a mean 65.8 events/h (95% CI, 58.8-72. pre-MMA to 7.7 (95% CI 5.9, 9.5) in the long term. Thirty-five showed a reduction in AHI from a mean 53.2 events/h (95% CI 45, 61.4) pre-MMA to 23.1 (95% CI 16.3, 29.9) in the very long term. Improvement in sleepiness was maintained at all follow-up periods. Lowest oxygen saturation improvement was maintained in the long term.

It looks like MMA still results in a need for some xpap both in the short and long term? Since it results in anywhere from 8 to 23 events an hour. But I understand very much wanting to get the surgery and get relief and that as jnk said, there are always factors unique to one's situation that a paper cannot cover. Maybe it's wishful thinking but it seems easier to me if my AHI is only from 8 - 23, as opposed to the 20-80 I'm dealing with now. but then I know MMA can have nerve issues as a consequence, and numbness and taste issues and I'm not sure if I could deal with that. It's hard to make these decisions and I wish there was such a thing as a patient advocate for sleep apnea to sort of walk you through all the data and decision making.

[sleepy-programmer]

Well that was the worst night of cpap sleep in my life. I got the F10 mask. It pushes against my bottom jaw in a way that is *so* painful.

I’m feeling rather fucked at the moment. Nasal mask is the only one my jaw seems to tolerate, barely. Sigh. I’ve been in pretty bad chronic pain for 2 going on 3 years now. Sometimes it just feels like this fight is unwinnable.

Defeated for today but not for forever.

[dogsarelife]

I'm sorry

The important thing is that at least you tried and you know those masks aren't options for you, which is cold comfort I know

What do you think you will do next? go back to the N20? Try the bleep dreamport?

And I Know what you mean about feeling defeated.

Have you considered trying dreamwear nasal cushion? that one was not for me, but I don't think it pushes anything back or forward with respect to the jaw. but I guess the risk is opening your mouth and losing pressure out of your mouth.

Or maybe someone else will have a suggestion for you.

Just curious, when you breathe do you put your tongue on "the spot" behind your front teeth? such that when you put your mask on, even if your mouth opens, there isn't air rushing out of your mouth? I know that's an important part of therapy.

[Dreaming1]

I would add a couple of things about the bleep, which makes logical sense about trying, in your case:
1. Nothing pinches on the bridge of the nose. If that’s an issue with the n20, well that stops that right away.
2. It can reduce your pressures. I will attest to that. I’m 2 lower than what I was and the AHI is the same. There are others that have gone through reducing pressure on this forum...djams being one. No leak means holding on to more therapy pressure.
3. It doesn’t jet the air into the nose like the p10 did (my old mask). It’s softer somehow. Maybe because the openings are at the base of the nostrils causing the air to expand more easily into the sinus cavities. Not sure on that.
4. Not having as much pressure might help some of your other complaints I read on here.

Just some thoughts as they related to my experience with the bleep, if you're considering that.

[sleepy-programmer]

Just curious, when you breathe do you put your tongue on "the spot" behind your front teeth? such that when you put your mask on, even if your mouth opens, there isn't air rushing out of your mouth? I know that's an important part of therapy.

Thanks for the support, it’s appreciated.

About this question, how easy is it to rest your tongue there? I don’t seem to have anywhere to rest my tongue. Like, I have upper teeth of course, but they kinda angle forward awkwardly and there’s a bump in my upper palate right behind my teeth. My tongue slips right off unless I forcefully hold it there. I have no idea if this is normal. Maybe I need tongue exercises? Ha.

The N20 with a nasal dilator as been the only thing that works (barely). Once in awhile, like last night, I’ll get an actual 7hr night sleep with it.

[zonker]

Just curious, when you breathe do you put your tongue on "the spot" behind your front teeth? such that when you put your mask on, even if your mouth opens, there isn't air rushing out of your mouth? I know that's an important part of therapy.

Thanks for the support, it’s appreciated.

About this question, how easy is it to rest your tongue there? I don’t seem to have anywhere to rest my tongue. Like, I have upper teeth of course, but they kinda angle forward awkwardly and there’s a bump in my upper palate right behind my teeth. My tongue slips right off unless I forcefully hold it there. I have no idea if this is normal. Maybe I need tongue exercises? Ha.

The N20 with a nasal dilator as been the only thing that works (barely). Once in awhile, like last night, I’ll get an actual 7hr night sleep with it.

when i first came to cpaptalk, it seems to me there was much discussion about this tongue against the roof of the mouth posture. i've tried it, myself, and it just doesn't work for me. i have an incredibly high arch to the roof of my mouth. i know this because every time i go to a new dentist, oral hygienist etc, they always say "did you know you have an incredibly high arch in the roof of your mouth?"

i figure this doesn't work for me because i don't have enough tongue to cover that arch.

i don't if you or i are "normal" in this regard. i just know it doesn't work for me.

[Muse-Inc]

Tongue behInd front teeth eventually becomes a habit. I practiced it when I was awake.

Large, scalloped on the sides, tongue shrank after I started getting restful sleep each night -- that takes some time and optimized therapy.

I have chronic sinus/allergy/vasomotor rhinitis congestion that gets worse when I lie down. A side sleeper, paradoxically, the side that congests first is the side that is up (facing the ceiling). I often am completely blocked so a FFM mask is a necessity. I have claustrophobia as well as a fear of suffocation so went for the RespCare Hybrid FFM (pillows and covers mouth). It works for me but as I slowly lose weight, my face is getting narrower, so I am looking at other masks before I am desperate with huge leaks. Options for me include nasal cushions and the Bleep.

[dogsarelife]

Thanks for the support, it’s appreciated.

About this question, how easy is it to rest your tongue there? I don’t seem to have anywhere to rest my tongue. Like, I have upper teeth of course, but they kinda angle forward awkwardly and there’s a bump in my upper palate right behind my teeth. My tongue slips right off unless I forcefully hold it there. I have no idea if this is normal. Maybe I need tongue exercises? Ha.

The N20 with a nasal dilator as been the only thing that works (barely). Once in awhile, like last night, I’ll get an actual 7hr night sleep with it.

oh hey, congrats on getting 7 hours of sleep! that's something?

Also, as you can see, mixed responses on the tongue behind the teeth thing haha.

I started practicing resting my tongue behind my front teeth, and also doing these 2 other exercises - one where you press your tongue as hard as you can into the top of your palate, and the other where you hold your tongue in place and swallow a bunch? Just because I felt like my swallowing, breathing, jaw, etc. capabilities were...off somehow? like everything had gotten weak from OSA? It also felt like i lost muscle in other area besides my face from OSA, as well as the ability to rebuild it, until I got my xpap.

Anyway, my philosophy on the myofunctional stuff was, it's free, what could it hurt, it did make it easier for me to properly nasal breathe at times, and if it helps me breathe better for Non-REM stuff, why not? (I read that it might not help in REM since everything relaxes completely out of your control then).

************************************************************************************
This sleep surgeon, Dr. Kezirian, wrote a blog on myofunctional exercises that was pretty interesting.

https://sleep-doctor.com/blog/oral-myof ... eep-apnea/

For my patients interested in oral myofunctional therapy, I tell them they have to go to Brazil to get anything close to a proven therapy. They will need to make multiple trips for the initial evaluation and then the follow up visits, but there are worse places to visit. Brazil is an incredible, fascinating country with wonderful people, so they can think of this as a good excuse to travel there.

whereas Dr. Guilleminault the discoverer of OSA has a blog, myofunctionaltherapy.blogspot.com with videos of exercises you can do for your different mouth muscles and especially if you have had certain sleep surgeries, like the frenulectomy or the MMA surgery I think.

Dr. Guilleminault according to that site has been trying to work with pediatric dentists, pediatric sleep docs and/or myofunctional therapists to treat sleep apnea earlier and earlier, and he does believe that myofunctional therapy in the US has value and worth, and that it is problematic if children have a tongue tie and cannot get their tongue into the proper position behind their front teeth and he writes in the comment section that he disagrees with Dr Kezirian and why.

and then you see the gamut of people writing in - people helped or not helped by myofuctional therapy; myofunctional therapists, dentists, other sleep surgeons, etc.

It's a pretty interesting discussion for me, as in - maybe there's something here that will help me?

There is a dentist in the comments of that blog post who says he surveyed his staff and have have their tongues behind their front teeth and have behind their bottom teeth and he doesn't get the big deal behind myofunctional therapy.

Nice healthy debate! take what works for you, leave the rest like Zonker and Muse-Inc But at least myofunctional therapy is free, safe, reversible?

I do like one of the comments by a sleep surgeon in the comments, that we are now in the age of personalized medicine and let's find a solution unique for each person instead of trying to treat each person like they all need a certain surgery or other procedure.