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Big Daddy--U r a sleep tech ? Resp. therapist? What do u think of this board? The gear that the CPAP companies sell is awful. Who do we contact for better equipment?

DarthTater1234 wrote:Hello. I am new here. Been having trouble with sleeping a long time.

I have not had a sleep study but I am sure I have sleep apnea. I don't have insurance right now, but I know I have to get a sleep study. However, I was wondering if a Bi/C/PAP Machine would help if I have apnea on **exhalation**.

I have been semi-awake several times where I cannot exhale due to blockage of what I assume is the soft palette. I also snore loudly. Also, when I am tired I can feel my soft palette muscles tired and sort of go flaccid. If I sort of relax my muscles I can duplicate this exhalation blockage when I am awake. Anyway my point is I am *positive* that the blockage occurs on *exhalation*.

If that's the case will I probably need surgery? Or perhaps a mouth guard? In other words a BiPap machines are for **inhalation** right? Although I do snore on inhalation too. Any info would be appreciated.[/b]

You clearly have obstruction. The non-surgical treatment is pressure. Pressure is safe. Most people need nothing more than an auto-pap and a mask.
Some doctors will prescribe an auto-cpap after a consultation. Others will force you to run the gauntlet of sleep study, titration study, purchase from their DME, follow-up office visits every six months.

Ask a friend and around work to borrow a spare machine. You will be surprised how many people use PAP, and many are seasoned enough to have spare machines. Or buy out of pocket via craigslist. I paid under $500.

Folks....old zombie thread.
OP posted 7 years ago. I doubt anyone is still around to read your thoughts.

Pugsy wrote:Folks....old zombie thread.
OP posted 7 years ago. I doubt anyone is still around to read your thoughts.

UGH: Another reason to eliminate guest posting - Reviving old threads stumbled upon via internet searches.
Note to self: check the thread date before proceeding.

well, I have the exactly same problem.and you can find many one have the same problem.

I have undergone many surgery (UPPP, MMA, TORS TB reduction,many other surgeris)in several hospitals, but still not fix this.
My BMI about 21-23, nothing wrong when inspect me awake. In may respect I am good candicate to undergo OSA surgery. it is not ture after those surgeries
In my PSG report I am a moderate OSA patient. After MMA it went to mild OSA, but after UPPP it got worst and worst, one year after MMA and UPPP, came back to moderate OSA again.

I felt my soft palate closure when exhale since long time ago.I suddenly awake from going to fall asleep due to this.
especially, no any DR can explain why. All they think collapse shall happen when inhale not exhale ....,shall happen when sleep not awake...
In my case, under DISE (I got 4 times before TORS TB reduction), DRs do not observe complete concentric collapse of the soft palate, but when I am awake it happen all the time when exhale.
I always feel partial narrow of soft palate and some totally blockage at the moment I am going to fall asleep.
I am pretty sure this happen after many surgery, even MMA,TORS TB reduction, UPPP, partial epiglottis trimming,just can improve a little my fatique, brain fog, EDS , eye pain, distraction
surgeries or APAP can not improve my syndrom a lot, just reduce my AHI

A report said there are 20% OSA have this problem, complete concentric collapse of the soft palate cause sleep apea when exhale. http://anesthesiology.pubs.asahq.org/ar ... id=1932906

In my case, my TORS TB reduction DR, the only one DR considerate my condition. He observe this from an endoscopy when I am awake. See pretty clear that my soft palate close completely when exhale not inhale or swallowing.

so he recommend me try to undergo BRP , he told this new surgery can improve soft palte AP collapse but not for concentric collapse, he will not trim my soft palate. completely concentric collapse is called CCC is hard to deal with, even UAS can not help this significalnty.

(since MMA not improve a lot,I had undergone UPPP, a terrible surgery cause my sleep more worst,went very bad,I even almost lost my job and life. my Resmed S9 report more UARS and finger oxymeter told me SPO2 level drop more and rapidly.I don't want to trim my soft palate again.my MMA Dr ask me to see a famous Pshycho, he didn't belive that UPPP leaded to this.I did cause I almost die for this,Pshco gave me a lot of medicines for depression,CFS, ...for nearly 8 monthes, almost useless, Pshycho finally admited still OSA syndrom.By the way, before my tongne base reduction surgery I didn't have any DISE simply those famous giant hospital didn't have DISE. Dr find no reason why, so I guess UPPP cut my soft palate and uvlu, that lead my tongue base to move backward further without soft palate to "hold" it. From DISE, I have a serious tongue base collapse )

I thought AHI (>10 sec) can not show this kind of blokage in PSG test,I have PSG test may times. I guess because that this kind of blockage close just for 0.5-1 sec every time I exhale,even enough to awake you, but can not be recorded.

Not good at english,sorry.

Obamacare was supposed to require heath insurance for everybody and deliver it to everybody at affordable prices. It's unfortunate that it's being attacked instead of strengthened.

I agree that you really should have a sleep study. If you are destitute, you can probably get one free or almost free. If you have a lot of money, you can pay for one yourself. If you're in the middle, you're getting squeezed!

Sorry to revive an old thread. I'm having exactly the same problem. I could have written the OP. My apnea is mild but often I cannot fall asleep due to my palate closing and instantly having me fully awake. This happens in the dentist chair, I can actually consciously open my throat enough to inhale but not exhale when the dentist is working on me.

Has anyone found any solution? Have seen two ENT's, they both say I have a long palate. I had one ENT suggest MAYBE the pillar procedure might help but no guarantees. He did also offer a turbinate reduction which I will probably do eventually but it's not my main problem. Pillar is also not covered by insurance.

I hate the machine. REALLY REALLY HATE it. I've been on it since about the end of July I have a ResMed autoset for her. It's currently set at 10 and I had a lot of trouble when it was running the auto titrating mode. They set it to CPAP at 10 and it's better but still not helping the palate closing. And of course my AHI is low but nothing like what I describe is showing up in the data. It always was low. when I took my original sleep test they said everything was normal (years ago). But I know I hardly slept at all. When I took my second one this past summer I had 'mild OSA' and they gave me the machine running on the auto titrating mode. I never even saw a sleep doc just the farmed out sleep tech. She was sure she saw some things but because it didn't 'fit' the insurance profile for stopping the test and trying CPAP in the middle of the test, she couldn't do that.

I'm scheduled for a CPAP titer test next week. The thing is I know how to adjust my settings. No matter what I increase the pressure to, it doesn't prevent my palate from closing. In a strictly mechanical way it doesn't make sense that increasing pressure will hold the palate open on exhale. They all think it should. You still have to overcome that pressure (essentially negating it) to exhale.

Oh yes it improves my sleep as long as I'm on my side. But I also have degenerating discs in my neck so I have to be able to sleep on my back.

If I sleep on my front, there is almost no issue with breathing other than keeping my mouth and nose clear enough to breathe. This is usually accomplished by me putting my chin on my neck roll. This of course is also no good for my neck. I can do it for a short time and then it is not comfortable enough anymore. The next night if I try it again my degree of comfort is even less. And so on.

There have been a couple of times with the machine that I've woken up able to remember a dream, and then I feel like I have actually been sleeping. But only a few. The consistent thing I remember about those times is that I had just enough air leakage from my mouth to not wake me but also to allow me to exhale, and of course my mouth and palate were all dried out. It also keeps my palate open when I have air leakage from my mouth. I was thinking about at least trying (again) a full face mask but I really hate the idea of that too.

I have brain fog (which has improved when using the machine, but not consistently), headaches, yawning all the time, I am irritable, depressed, and mentally exhausted, and just functioning at a very low energy level nearly all the time.

If this titer test (being done in Minneapolis) doesn't give me some answers (I doubt it will) I may try to go to Mayo but I also feel like because I'm classified as "mild" OSA I feel guilty going all the way over there and insurance will think I'm making a big deal about nothing. The spine doc already had to argue with them for two hours to get the first epidural injection approved (even though I've been battling this neck stuff for years).

You say you 'hate' the idea of a FFM, but if you were to try one, properly fitted while lying down as your face changes a lot then, and it helped you feel better, you might be surprised at how little you then 'hate' it - isn't it worth a try? I wonder if a new attitude re hating Cpap would help in general. So many of us who've used FFMs for years now can't imagine not using them and feel lost without one.

I did try one, it doesn’t work either. Only allowing my exhale to escape my mouth works. The pressure from a full face mask does not allow the air to escape out of my lips because my mouth is never open when this happens . It is leaking out of my cheek and lip. I tried a FFM during my titer test which IMO was a waste of time and it was instantly much much worse but the tech was happy because it apparently fixed my “mouth breathing.” Yes by stopping exhalation completely it fixed my mouth breathing.

Gee i might be able to have a new attitude if I could find a solution. Thanks

I feel better when I use my nasal mask (which at least stops my snoring in all positions and I can sleep in any position where my face is not raised above horizontal, approximately) and still hate the machine.

I am also a singer, so it’s not as if I am unaware of how my throat works.

There's no reason to not exhale from your mouth with the RIGHT FFM... you're not losing the air to the outside. I have no idea where I exhale to when asleep, but I know the air stays 'in' and does not escape out, wasting the point of Cpap, so (again) you need to be fitted with the right one... does your DME not allow you to try diff. ones at one time (lying down)?

I'm telling you my mouth is not open. With a FFM on, the air is prohibited from leaking out the cheek AT ALL so the air never reaches the mask, and I don't normally exhale from my mouth. My jaw is not open. Therefore I cannot exhale through a FFM. If I do let air leak out of my cheek with a nasal mask it is usually too much. If I don't have a mask on I can exhale fine, a little puff escapes my lips and then my lips close again. But I need the CPAP for inhalation just as much. I may only have slight apnea (on inhalation) but I definitely have to work hard to get air in and I wake unrested usually with a headache. I don't grind my teeth or leg twitch.

I am glad though that finally a PA at the sleep doctor understood me. She said this is NOT a sleep apnea problem especially because I have it when I am awake and in the dentist chair. This is a problem for an ENT to figure out, and she has no answers for me other than having to search around. Maybe one of the bigger specialty hospitals would have some idea what to do. She's the first person to understand me.

I explained that I can consciously hold my throat open in the dentist chair only on inhale. I can't do it on exhale even with great effort once they start working. So there's no way I would be able to do it while unconscious. I asked about a sleep or sedate endoscopy and she agreed that might give me more answers but they don't do those sorts of things. An ENT would have to do it.

I certainly could try them lying down but it won't work without being connected to the unit either. I can demonstrate the problem when I'm awake without a mask or with a mask of any sort. It doesn't matter. They can't see what's going on in my throat. I can only tell them what I'm feeling and hope they understand.

Look up 'expiratory palatal obstruction', there will be a video in the search results out there by a doctor with initials S. P. (not affiliated with him at all, just want to show you the video he has of a sleep/sedated endoscopy showing the problem)

"With a FFM on, the air is prohibited from leaking out the cheek AT ALL so the air never reaches the mask, and I don't normally exhale from my mouth. My jaw is not open. Therefore I cannot exhale through a FFM. If I do let air leak out of my cheek"...

What am I missing? Is there a hole in your cheek that allows air to escape?

Are you aware that on your machine there's a feature that helps with exhalation - it actually may raise your AHI by 1-2 cm as a result, but also makes exhaling easier.

I'm having trouble understanding your note(s) because of the terminology you use. I'm not sure where an endoscopy comes in either... though I believe it makes sense to you - can you elucidate a bit more please?

And NO one expects any of us to consciously or otherwise hold our airways open when asleep. Or am I misunderstanding that too?

Are you not aware that FFM's have vent holes to allow CO2 to 'leave' when you exhale?

The air on exhalation does NOT GET TO THE MASK AT ALL to escape out of those holes. It stops in my cheeks from the pressure of the mask on my face. I understand how it all works. Or at least how it is *suppposed* to work. And since I've been paying such close attention for the past year to my sleeping habits I'm finally being able to piece together why my breathing only halfway works without the CPAP and now only the other half works WITH the CPAP.

I don't understand your questions. If there was a "hole in my cheek" we wouldn't be having this conversation because the air that was supposed to exhale through my palate-collapsed nasal passage would just go out my cheek.

I already fiddled with the EPR. It was on 1, I prefer it on 3, it only has 1,2, 3. None of them make any difference for this problem. The PA I talked to agrees and understands now that it is not a sleep issue it's an ENT issue.

The CPAP works great even on the lowest setting (4) for inhalation issues only - and except when my turbinates swell. No setting works for exhalation through my nose, because my palate closes when I'm even slightly on my back. I have tried lowest up to 13, and have endured many nights of air being forced down my stomach on exhale instead of out into the room because my palate is closed and air is prevented from coming out my mouth.

A sleep or sedated endoscopy is when they stick a camera into your nose to look at your nasal passages and pharynx while you are sedated so they can see where the collapse is occurring and when.

When I said I was unable to hold the passage open even when awake and consciously trying, that was all I meant. I can't even do it when I'm awake in some situations, so obviously it's pretty bad, and is going to happen when I'm asleep.

Preventing air from coming out my nose means it has to come out my mouth. Which is a no-no for a nasal pillow or nasal mask, and with a FFM, it doesn't work because my mouth is not open. I don't sleep with my mouth open normally either, and of course you can't with CPAP. So the air I want to exhale tries to leak out my cheeks and the corner of my mouth, but is prevented by the mask edge pressure itself.

I did write to the company that makes alaxostent and asked how i can get one (probably not covered by insurance though). THAT might actually work for me if I can find someone to prescribe it and teach me how to insert it. The only have one US distributor at the other end of the country. I HOPE and pray that if it works I can ditch the awful machine entirely since my apnea was only 'mild' they said (but I woke with headaches from the snoring constantly).

I will probably get the turbinate reduction also as soon as I can, which should be covered by insurance.

whshy wrote: ↑

Sun Feb 25, 2018 6:51 am

well, I have the exactly same problem.and you can find many one have the same problem.

Your english was entirely understandable to me. I have the same problem you do. Have you found anyone who understands? I think I might have found one. Finally. But she can't do anything for me. She told me I need to find an Ear Nose and Throat specialist to deal with this problem.

There was a product mentioned called the alaxostent somewhere and I'm looking into that. It might be more available in Europe if you are over there, since that is where it was created.

terriergal wrote: ↑

Sun Mar 03, 2019 5:09 pm

The air on exhalation does NOT GET TO THE MASK AT ALL to escape out of those holes. It stops in my cheeks from the pressure of the mask on my face. I understand how it all works.

Then stop making up nonsense statements that mean nothing to anybody that actually does know how things work.

Your "cheeks" are not involved *IN ANY WAY* with breathing. They are not part of your nasal structure, they are not part of what controls where air goes.

terriergal wrote: ↑

Sun Mar 03, 2019 5:09 pm

I don't understand your questions. If there was a "hole in my cheek" we wouldn't be having this conversation because the air that was supposed to exhale through my palate-collapsed nasal passage would just go out my cheek.

Your "palate" is the roof of your mouth,

terriergal wrote: ↑

Sun Mar 03, 2019 5:09 pm

Preventing air from coming out my nose means it has to come out my mouth. Which is a no-no for a nasal pillow or nasal mask, and with a FFM, it doesn't work because my mouth is not open. I don't sleep with my mouth open normally either, and of course you can't with CPAP. So the air I want to exhale tries to leak out my cheeks and the corner of my mouth, but is prevented by the mask edge pressure itself.

The whole point of a FFM is that one can breathe either through one's nose, or one's mouth, or both.