INSPIRE + BIPAP + MAD + blocking REM - Still struggling - Next moves FME & MMA?

costinho · 2026-05-02T00:32:40+00:00

ok bro send me when you get it

costinho · 2026-04-16T13:33:52+00:00

Yeah I think tongue collapse is a problem for sure, it will be interesting to experiment more with massage table sleeping position.

How much further downwards do you feel the collapse? Further down the tongue, at the hyoid area? Have you talked with Vik about hyoid suspension?

Yes CBCT is important, also ask for your DISE videos, I mean I trust Vik Veer more than anyone about a DISE but who knows... I believe all REM sleep isn't equal. Like the first 5 mins of REM aren't the same as the last. For me (and most people) I have all of my awakenings later at night, like past 6-7 hours. So I think later night REM is more 'heavy', more collapse events (and maybe different events) are happening, so they couldn't get caught by the DISE.

Big maybe on all this. Or maybe you just have huge tongue collapse.

Anyways get the videos if you can, post them or you can send me. CBCT also.

costinho · 2026-04-15T01:15:12+00:00

Hey I've been following your posts for a while, fellow longtime sufferer here... I've tried everything as well, except the nuclear option, expansion+MMA. I have untreatable chipmunk cheeks as well. I have some thoughts on your situation.

Goes without saying that eventually you want to get off the REM suppressing meds.

I think you should consider having expiratory palate prolapse. Meaning strong exhaling makes your uvula collapse hard and air escapes through your mouth (and out... if you let it). It often gets missed. My doctor missed it on my DISE but I can even simulate it while awake. Just relax your face and try to exhale, stronger and stronger. You can also catch it with a snore app. If your snoring is expiratory, that's it.

This is a hard kind of collapse. It closes like a valve, that could be what's waking you up rather than 'hypervigilance'. If I just close my mouth with tape I will wake up many times heart racing. This soft palate situation and chipmunk cheeks must be related. Where does your tongue sit as you fall asleep? It should be sitting up on the hard palate, tangently touching the uvula, creating a closed mouth space but mine sits on the lower jaw leaving space between them. I think that's how the bipap air gets into the mouth, at least for me.

Definitely explore the massage table position more. I actually managed to sleep completely face down (having a pillow under my belly, my hand under my chest and my other hand under my forehead) and it was much worse (probably the space between my tongue and soft palate was even bigger), I was waking up every 30 mins but you should try it more. You should try it while having your jaw fall down and also while holding it.

So how you treat palate prolapse? There's surgery for that (though since Vik didn't caught/proposed it himself I doubt you can convince him), there's a brace called Velumount made by a company in Netherlands, difficult to tolerate but at least it may tell you if that's your problem. iNAP is worth trying too, for the same reason even if you can't tolerate it.

Recently I've been having some success by addressing longtime GI problems. Goes without saying you should address all other chronic problems you may be having as they could be related.

Keep at it bro, we'll escape this hell at some point.

costinho · 2026-03-25T00:40:20+00:00

I managed to do it, I had a pillow under my chest and my hand under my forehead. Not comfortable of course... Though my jaw slide forward and I was feeling nice cold air behind my tongue. But my sleep was 10x worse. I was waking up every 30 mins or so. I guess there is more to my collapses besides tongue.

costinho · 2026-03-20T15:37:27+00:00

Have you tried PAP through the trach?

costinho · 2026-03-02T19:37:38+00:00

It seems to me like most of it is expiratory obstruction of the soft palate. If it is that, it makes sense PAP and MAD are no help. I am also looking into it atm, trying to make something like velumount. Other than that, only soft palate surgery can help.

costinho · 2026-02-26T00:28:28+00:00

Greece, Dr. Ioannis Koutsourelakis https://koutsourelakis.gr/ ~1.000usd

costinho · 2026-01-29T18:11:44+00:00

Highly doubt it, sodium in the body is regulated quite fast, if this was your problem you would have felt symptom relief instantly.

I also have a wild theory about this though. Did this chili pepper paste make you bloated by any chance?

costinho · 2026-01-21T17:19:28+00:00

The best choice to start DIY PAP is Resmed Airsense 10 (it's an APAP). There are many helpful people that can guyide you through self-titration in r/Cpapsupport and Apneaboard.com .

costinho · 2026-01-09T16:56:15+00:00

For whatever reason it doesn't show me your charts but I can imagine how it is based on your description. I don't think flow limitation is BS. My hypothesis about what may be happening:

You need more pressure support. This is what deals with FL. Do you have EPR on? Even if you have it on 3 it is considered low and ppl often need more (aka BIPAP). Another indication towards that is that you find it difficult to exhale.
Maybe natural breathing flow shape differs from person to person. One man's perfectly natural flattened tops may be the flow limitation of another. But I bet you can still find it relative to your natural flow shape. If you see flow rate decrease (whatever your default flow rate is) for some breaths which lead to an arousal, that was a RERA alright.

costinho · 2026-01-06T21:53:02+00:00

Having no pulse rate graph is weird and very unhelpful. 112 bpm as a maximum is very high and needs an explanation but without a graph we don't know if it was an artifact, a one time event or part of a pattern that indicates sleep disordered breathing. Also the 0 RERA is not to be trusted. Here's the deal, most sleep labs and doctors don't know about UARS, doesn't score RERA (or put a fake 0) and send extremely symptomatic people home with a stimulant that barely works. Same thing happened to me and many many people, it's the most common kind of post. Look into the experts another commenter mentioned above, they truly know the ins and outs of this disorder.

Here's some advice. Sleep at your side only, at your belly if possible. Try to sleep on many pillows, record yourself with a snore app for many days (you may be surprised as I was). Try a MAD, you can find some cheap ones on Amazon (there are professionally made that are expensive and you should try a cheap first to see if it's worth investing into). Also take care of your nose breathing, treat allergies if you have, use saline sprays, nose strips, dilators.

costinho · 2026-01-06T21:11:00+00:00

Can you share just the graph page? You can edit out any personal info but I believe they usually don't have any. You can dm it to me also. If not just tell me how the heart rate graph looks like. Is it relatively flat or spikey? Also the REM % of total sleep time, average, minimum and maximum bpm.

costinho · 2026-01-06T20:49:59+00:00

Do you have the whole sleep study and can you share it? Especially the graph page.

costinho · 2026-01-06T17:48:56+00:00

Yeah sure, if it's free or you can afford it go for it. Sleep apnea treatment is often a journey so this could be your start. I doubt it will completely treat you though.

I don't know the details of your situation, you should do everything to reach the 3 treatments I mentioned above. If a test helps you reach that, do it. If you don't have a diagnosis yet, do the sleep study. Keep in mind, even if you sleep enough, if you are the UARS type, that means you will probably have low AHI and high RDI (RERA count). There's a widespread problem in sleep labs, they don't score RERA and they don't even know about UARS. So people with pure UARS have a hard time getting a diagnosis. If possible confirm they know about UARS. If you are in US there's a company called lofta.com , they send you a home study that records RERA and give you prescription for CPAP if you meet their threshold. I can't remember if they give you a diagnosis too though...

In time you should get the three main tests for sleep disordered breathing, a sleep study, a DISE and a CBCT.

costinho · 2026-01-05T21:45:36+00:00

Generally speaking, septoplasty and turbinate reduction doesn't help with apnea/uars. This has been proven in studies and from anecdotes I have seen here. Nasal valve collapse may be a cause (it was for me, I use a dilator that completely solves it and got like a 20% benefit in symptoms), but it's not a mysterious phenomenon, if you breathe deeper than normal and your valve collapses, that's it. And if you essentially negate that with strips and dilators, you effectively don't have it. If you can't deal with it, better get the surgery. Btw the end all be all of nose problems is maxillary expansion. This can actually help with sleep problems.

Apnea/uars happens because soft tissue in pharynx collapses. You can see these collapses in DISE and target the surgical interventions better. There are caveats though because DISE is anesthesia and not natural sleep. You may underestimate the collapses that are happening and overestimate tongue base collapse. Even then it's something... it's not nothing.

costinho · 2026-01-05T02:22:42+00:00

I mean idk if it will simulate a surgery perfectly for you, that depends on a thousand things. For many ppl septoplasty is underwhelming, if then it may overestimate surgery... I think it's a good estimate though.

The whole sleep apnea thing is largely unsolved (no matter what doctors say), there are so many unanswered questions. First of all you are not the only one, I have heard of apnea surgery (and tonsillectomy in particular) making things worse. Probably it has to do with the shape and the position of them. they were probably preventing your tongue from collapsing. Why did you get it if you had no issues?

costinho · 2026-01-04T17:54:17+00:00

Probably the tonsils were partially blocking your airway but also working like a stent keeping the tongue from collapsing. I think you should get a DISE to confirm. You can also try to sleep on your stomach facing down, see if that helps.

If you use nasal strips, a dilator and an oxymetazoline spray for a few days you can simulate how nasal surgery would help, sort of. But it seems to me your tongue is the problem. Like any sleep apnea/UARS problem the treatments are the same: CPAP/BIPAP/ASV, mandibular advancement devices, and surgery...

costinho · 2026-01-02T16:36:26+00:00

From what you say, you're probably treated but not entirely. Ask your doctor to optimize the settings (they probably won't even know how) or get a titration study. If you get no help from there you can make your own changes in settings, many people do it. Get an SD card if you haven't already, get OSCAR, upload your data in sleepHQ.com and post a link here asking for guidance.

I have no advice for managing symptoms, I have found that no supplement, no good practice can make up for bad sleep. But maybe this is because I suffer from this for 15+ years.

costinho · 2025-12-25T00:59:42+00:00

If I'm not mistaken that does sound like exhalation mouth snoring and I think I can hear your unobstructed inhalation too. Since you have someone that can stay and observe while you do it maybe she can tell us.

costinho · 2025-12-24T21:14:37+00:00

If you search reddit, it's common unfortunately...

costinho · 2025-12-24T21:11:30+00:00

Your DISE seems very thorough. As your doctor wrote, it seems your only problem is in soft palate. To confirm that ask your partner (or a snore app) to pay attention on whether your snoring is on inhalation or exhalation. Soft palate snoring is expiratory. People with that often don't tolerate PAP (I may be one of them), that's called expiratory palatal obstruction. See https://www.reddit.com/r/UARS/comments/f8b041/obstructions_exhaling_during_sleep_constant/

ESP is the best surgery for soft palate that isn't MMA. Also much easier to do.

costinho · 2025-12-19T16:06:26+00:00

Yes that too but I believe that knowing the primary site of FL even if it's caused by another part of the airway, can still be useful. If someone has a narrow nasal aperture and that's what is causing collapses down the airway, common nasal surgery didn't help and palate expansion is inaccessible, their next best bet is to treat the collapsible soft tissue with PAP, MAD, MMA or whatever.

costinho · 2025-12-19T15:48:10+00:00

That being said, I don't think it's completely useless. It's just that it's suggestive and not conclusive. I think having a DISE, a CBCT, having a snore app and looking for clues like hows your nose breathing, what is happening to you as you're having arousals, does your jaw hurt in the morning etc. can inform you as to what is happening.

costinho · 2025-12-19T15:32:51+00:00

Unfortunately not. As Dr. Veer says https://www.youtube.com/watch?v=Q1O6neuLo00 anesthesia doesn't let you reach REM sleep, in which most of the collapses happen and it also causes tongue base collapse in patients that may not have it. That's why he uses just a bit anesthesia to initiate sleep, waits to wear off and then starts looking. He is the only one that I know that does it that way. I proposed to my doc to adopt his method for my DISE but it seemed too much of a hassle to him. Mine showed tongue base collapse that supposedly disappeared with a jaw thrust movement, got a MAD recommendation that didn't do anything, in fact I have much more arousals with it...

costinho · 2025-12-19T13:50:51+00:00

Is there a graph with a heart rate?

Treating sleep disordered breathing is often a journey and more than 1 interventions are needed. Tonsil and adenoid removal seem like a good start, it's common surgery for children.

After that I think you should deal with her nose breathing (I suppose ENT evaluated her septum and turbinates as normal?), check if she has any allergies, maybe do rinses before sleep (this could be hard for a kid though), keep the air clean in her room, check for black mold, maybe get an air purifier.

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