Palate still closing on exhale

[Motomom]

I find your post interesting as I feel that I am suffering from the same symptoms.  I also have disc degeneration in my neck as well as all down my spine.  I've posted my charts several times that show little to no exhale, and have gotten the response that I am mouth breathing.  I wear a full face mask now and still experience this breathing pattern most of the night.  Last night I woke myself up to some sort of blockage, snoring sounds, that I can recreate somewhat even when awake.  My mouth is not open, and I never seem to have slipped my lip below the mask, so I am still searching for an answer.  I had surgery several years ago to stretch my esophagus because of choking episodes while eating.  I am also overweight.  I would be interested to know how you sleep on your stomach with a neck roll as this would seem to hurt your neck.  I've read that stomach sleeping is actually a good position for those with back problems.  It has helped me on occasion to loosen back spasms, but I can't stay in this position for long as I'm having to hold my head to the side to breath.  I wish you luck with solving this dilemma and will be following to hopefully solve my own.

Sorry I missed this post before.  You're right the neck roll with my chin propped on it is not great. I did it once and it seemed great.  But the more I do it the worse it gets and the pain and discomfort makes it hard to sleep, once again.

I should clarify. With the full face mask I tried several months ago, I had it loose enough so that the air can actually get out of my mouth into the mask, then I get leaks.  In my titer test they put one on snugger than that.  But if I have it snug enough not to get leaks, the air can't get from my trachea into the mask on exhale. 

When I exhale, my natural preference would be through my nose.  My mouth doesn't really open when I am asleep, much if at all.  So when the palate snaps shut, air is forced into my cheeks and out the corner(s) of my mouth.  This happens without the machine on sometimes but it's not enough to wake me up unless I am on the machine. I've observed the same thing in my husband sometimes, who doesn't snore much at all, but occasionally on exhale has air escape out through his cheeks to the side of his mouth.

If I have a full face mask on, the pressure from the edge of the mask causes that route to be cut off so my cheeks puff out and I end up waking up having to open my airway consciously anyway.  When I had the machine pressure turned up, the exhalation would be forced down my esophagus a lot of the time too.

Apparently some people are having trouble understanding this explanation when I have given it.  But be that as it may, this is an accurate description of what is happening.  It happened during my titer test and the sleep tech that put it on me thought it was great that it stopped my mouth breathing. Yeah, it did, because it stopped my breathing/my ability to sleep at all.  

I was actually excited to see your response on this thread as I feel that we are experiencing something very similar.  Funny too, my name is Terri, no joke!  I have found a mask that I absolutely love, but I don't think it is going to work for me.  I've been using the Tap Pap mask for a few weeks now, trying my best to keep my mouth from leaking.  Tape, Poligrip, chinstrap, collar, and now I wear sleepphones to listen to binaural beats that help lull me into a deep sleep.  I pray my neighbors never get a glimpse of me letting my dogs out in the middle of the night  .  I can only imagine what I must look like.  I don't dare check it out in the mirror. 

I've raised my pressure to 15 to try and keep an open airway.  I'm not using EPR at this time because I didn't think it would help.  I don't think my condition is as severe as yours as I'm able to keep my AHI under 5.  Any suggestions as to what I might try next.

Please keep us posted on your journey and what avenues to success that you venture down.  

Regards, "Terri Too"

[terriergal]

I originally raised the Alexo Stent and INSPIRE as an alternatives that might be applicable to your situation. The Alexo Stent ( nasal airway stent) is very rare in the U.S. and hopefully the company that wants to market this will use your case to expand their acceptance.  None of us have actual experience with this approach, but it seems like it should work to stent your prolapsing palate.  Inspire is more targeted to conventional obstructive apnea and uses an electrical stimulation to tighten the muscles when an apnea is detected.  Does it even work for expiratory apnea? Big question that has not been addressed in any studies I'm aware of.

I don't know that is my question. I have to make an appt with an INSPIRE provider to ask.  And as my physician won't even think about the AlaxoStent, that seems to not be an option right now.

[terriergal]

UPDATE
I talked to the Inspire certified ENT.  She realized the Inspire wouldn't work for me and she did suggest UPPP.  But she did not sell it hard. She knows it is not always a good solution.  She requested approval from insurance, but she knew they would probably deny it at least the first time, and she said she would appeal. In the meantime I asked for a sleep endoscopy which we did today.

Result, she said I am right, my palate is REALLY loose and floppy and stretched out. She even saw it was quite wrinkled up on the back side which she said she has never seen (or hardly ever seen, I was still a little sleepy so not sure which she said).  

She's quite sure UPPP would help a lot with that but it would not be a panacea. I also have some significant collapse from the sides of my throat.  She said they did a maneuver with my jaw (pulling it forward) that really opened things up so I have to try a jaw advancement device I think first to see if I can tolerate that. I seriously doubt that will work for me  from a comfort standpoint but... ya know you have to jump through the hoops.  And I'm willing to try.

I personally don't think CPAP does anything for this problem. It may relieve someone's snoring and inhalation problems but substitutes a different problem that seems far more sleep disturbing. I spend what seems like hours trying to fall asleep in a position i can be comfortable in, only to be jolted awake by that sensation of my palate slamming shut and me having to consciously open it.  It never shows up in the numbers. (It does show up in the waveforms which they don't seem to care about, and I can't for the life of me understand that.  Don't they know we have to inhale AND exhale!? 
  If waveform is not important why do they chart it?   I get frustrated when doctors tell me I don't have much of a problem with apnea because I am pretty sure the apnea they are talking about is only on inhalation. The machines don't care about exhalation for some dumb reason. I was sitting here at the table yesterday falling asleep with my eyes open about 3 in the afternoon.

I found a thread entitled "Flow Rate Waveform Examples using a Nasal Mask" that shows a similar (but more rounded) flattening when people switch from nose on inhalation to mouth on exhalation.  But with this problem the flatlining is very sudden.  

It's very easy for me to snore on exhale even when awake in certain positions, if I relax my throat.

Oh I have to remember to ask her to look into the AlaxoStent too, when I have my followup this Friday.

[Gideon]

It sounds like you have found a doctor that understands your problem.

Keep us informed if you do not mind.

[Sleeprider]

Sounds like your doctor is knowledgeably and caring. I'll be interested to hear what she says about the Alexo Stent.

[gcritchley]

any updates on this issue from the OP? thanks

[terriergal]

any updates on this issue from the OP? thanks

i haven't tried the alaxo stent yet (as I mentioned on the other thread).  A couple weeks my Mandibular advancement device will be done and i have to give that a good college try first.  Basically been in a holding pattern.  The ENT who did my sleep endoscopy thinks the Alaxostent would work for me too, and she would probably be willing to prescribe it but of course it's not going to be covered by insurance. So we are trying the mandibular thing first. I have my doubts.  Everything I've tried has worked... a little bit. Just not enough to make me terribly enthused.  She had said the CPPP wouldn't be a knock it out of the park solution.  I'm like... well... none of them have been!

I had my pain doc give me facet joint ablation to help with my neck arthritis issues so it's been easier to sleep in a position my CPAP works in. (too much side sleeping still bothers my shoulders though).  I don't know how long that will last, since arthritis is degenerative, obviously.

I just had the turbinate reduction done 1 week ago, so still recovering from that (no real improvement as a result, yet... some nights I can't breathe at all through my nose because of the drainage and swelling on the left side especially which makes for a horrid night but otherwise it's not really troublesome to recover  from during the day - just annoying. Using my Neti pot a lot, i feel like i have so much phlegm just stuck back there and I can't move it.  But I had nearly always felt that way before the turbinate reduction too... so hopefully after two more weeks or so it will improve).  

They sometimes have to go in and redo, I guess.  I would like more taken out of the left side, heck i'd go for making the bone structure smaller too.  It is constantly pressurized and obstructed on the left, so after a while of lying down things get worse regardless of allergies and i end up taking off the mask because I can't get enough airflow through just one nostril.  I almost never have trouble in the right side nostril, so that tells me it's not likely to be allergies.  Even when I know it *is* allergies, the right side isn't as bad as left.  I have to constantly use Afrin to get a good night's sleep, but I know you can't really do that too many nights in a row (and I don't) or it stops working.

I do think some kind of palate surgery would work for me.  Sometimes when I get dried out in my throat and palate, the palate isn't as flexible and I can manage to exhale without it flapping shut for a while anyway.  But as soon as I swallow and spread the moisture around it goes back to flapping shut.   I also suspect that after many months to a year of using CPAP my palate has slightly tightened as a result of not constantly snoring.   At some point I think I will do the palate surgery whether I have to pay out of pocket or not.

To convince the insurance to cover anything for this is another matter entirely. I'm still miserable more nights than I care to be.  And I have enough other health stuff and family stuff stressing me out that I need to be able to sleep.

Thanks for thinking of me. I kept thinking I should update this and kept forgetting because really not much has happened since my last update.  Just a lot of waiting for things to get done.

[yrnkrn]

Thanks for the update. I hope your turbinate reduction will help soon, even a bit.

[Sleeprider]

Sorry to hear of the continued difficulties. I recently started using Flonase and think it may have saved me a trip to the ENT. Hope you will stay in touch as the surgery stabilizes.

[dadsocket]

I want to say thank you for this interesting discussion. I am writing to add my story to the OP, with the hope that it may be helpful. I hope to also hear back from the OP about their experience since the last post.

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I have the precise issue you describe in your posts here. I experience my palate closing against the back of my pharyngeal wall ONLY on exhale, particularly when relaxed and simulating sleep. When I am focused on something while seated, I will also notice my palate sometimes closes and directs my breath through my ears, which is the same feeling I have when waking up in the morning and during the night. I also notice that the snoring I do have primarily occurs when exhaling. Thus, I too have no trouble inhaling, but have difficulty exhaling.

Now, I have never been formally diagnosed with apnea because I have never been able to sleep during a sleep test (I have tried three times), but I still suspect some form of apnea, since my sleep improves after tilting the bed and by sleeping on my side. My sleep also improved significantly after a septoplasty with turbinate reduction. Further, my sleep has improved a lot while on an anti-depressant -- I have been on one for 15+ years and before then I only slept 6 hours a night -- because (I hypothesize) it reduces REM sleep, when muscles relax the most. I also notice that I will always wake 3-4 times a night, specifically during REM sleep; if I kept a sleep diary, I would have years of dreams recorded, because I almost ALWAYS wake during them and remember many of them.

About 10-12 years ago I was able to acquire a(n) CPAP/APAP from a sleep doctor who had me do an autotitraion. It never worked very well with the nasal-only masks that I had, so I gave up on it for the most part, pulling it out every other year or so to give it another try. Because I never showed severe daytime impairment, and even though I have not had a refreshing night of sleep since my late teens (except for two specific nights I can vividly recall), most doctors I saw just wrote me off. So, I ended up not believing that I actually had/have a real sleep problem. Thus, up until now I have been left on my own to keep myself at some decent baseline. I was able to complete graduate school, for example, so my current pharmacologic regimens have worked to offset any sleep disordered breathing I may have. (Note: If anyone is curious, I have found that the best regimen for me to keep me asleep and balance daytime sleepiness is appropriate doses of SSRI + modafinil + caffeine.)

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In any event, the reason I am writing now, is that I am really finally getting fed up with my sleep issues. As time progresses, I find that I am having more memory issues than I should for my age, and I am still never waking up refreshed. As well, I notice that there is really no mention of palatal obstruction on exhalation in the medical literature. I did read the paper cited in this post.

Therefore, I am working more methodically to find a solution on my own and hope that by posting about it someone else may benefit or have ideas that may help me. Recently, I have begun putting together my own EEG setup from OpenBCI, and recording my sleep with sound and other sensors, so that I can have hard data. I have worked to interpret EEG signals, so that I can create my own hypnograms. From the sound data, it is already clear that I snore very loudly and stop breathing periodically. I can also confirm that my awakenings appear to coincide with REM sleep.

In addition to the EEG, I have pulled out my CPAP again and have purchased a new full face mask. I have also begun the process of trying to titrate myself to some baseline, such that I can extinguish the palate closure on exhalation while simulating sleep; I am able to relax enough to cause the closure I have during sleep. My plan is to trial a minimum pressure that seems to keep the palate open on exhale to see if it is effective during actual sleep.

More interestingly, I was able to get my hands on an Alaxostent, which was mentioned in this post. I have been working to get used to it, but so far it hasn't been that easy. I have only tried to insert and expand the device a few times, so I am not close to giving up yet. But, the few times I have tried have been uncomfortable. The insertion of the application tube was not all that uncomfortable, but the retraction of the tube and expansion of the device caused a hard-to-describe "urge" to withdrawal it. It wasn't because of a gag reflex. I discussed this recently with my PCP, and he did mention that area of the nasopharynx is sensitive. The physician's manual for the Alaxostent notes that for sensitive patients it may be necessary to adapt to the device using a lidocaine gel, so my PCP gave me a script for it.

A similar device I haven't seen mentioned here before is the Nastent. It is a small tube that is inserted into the back of the nasopharynx via the nose, similar to the Alaxostent. However, unlike the Alaxostent, which is made of metal and expands to somewhere between 1-2 cm, the Nastent is more akin to a traditional nasopharyngeal airway tube, but with a much smaller diameter. I tried several of these this past summer, but gave up on them initially because they seemed to not prevent my airway collapse. Also, it was very difficult to get, because they are only sold in the UK and Europe, so I had to jump through a lot of hoops to get them from Amazon in Germany. However, it may be a solution for others.

At this point, I'm not sure which path will work out best, but as mentioned I am working on several possible solutions and gathering data. Since this particular issue of palate prolapse/collapse on exhalation seems to be uncommon, I thought it was important to post here about my experience and trials as they go forward. It helped me a lot to find that there are other people with my same problem, so hopefully as I proceed, this information will be useful to others.

If anyone has any questions, ideas, etc. about my story or experimentation, please feel free to ask. It is wholly possible I forgot to mention something here, or that others may have ideas that could be beneficial.