Palatal Prolapse and Velumount

[zaienk]

Hello 

I create this new thread to share a feedback regarding the treatment of palatal prolapse with velumount combined with PAP therapy.
Context and story : I'm 40 years old, french, have a healthy life style doing sport 5 days a week (crossfit, fitness, running, swimming) with good diet, I do not drink alcool and I do not smoke. I like technology a lot in general.

I was suspecting sleep apnea since end of 2021, as I bought a withings sleep analyzer device to monitor my sleep and this device indicated me moderate sleep apnea on a regular basis, some times, severe apnea, and severe apnea much more frequently since 2023.

So I did a polygraphy sleep study in July 2023, mainly because I feel tired all the time since at least 5 years despite of a healthy life style and have been diagnosed with a severe apnea, an IAH of 33, mainly obstructive, on dorsal position. As I sleep on my back since a very young age, I don't manage to sleep only on my side, it's like torture for me.

  Sleep_study_20230707.pdf (Size: 566.35 KB / Downloads: 3)

So we gave me a CPAP machine, a Resmed Airsense 11 Autoset since the 20 of July 2023 to treat my apnea and I use PAP since then.
As I'm very curious, I looked for a software to read the data of the SD card and a knowledge basis to understand how to interpret the data. 
I found Oscar software (amazing software, thank you and keep the good work!), the apneaboard and wiki and also the TheLanktLefty27 channel on youtube, I looked at almost all his video and in fact my "sleep apnea knowledge" is mostly based on these.

At the beginning, I was really disturbed by the noise of the machine, I have to sleep with earplug since I used it.
We provided me a nasal mask which quicky gave me noise irritation, I waked up often during night because of the noise of the air going out of my mouth and me not breathing, it was annoying and disturbing. We gave me a chin strap to help me keep my mouth closed but it didn't really work. So I started to tape my mouth and also bought new mask by my own, I tried pillow mask, resmed N30, P10, F&P brevida and found that the P10 was the more silent and leak free mask for me event if it was still not perfect as regular usage gave me irritation, and I got also leak when sleeping on my side. At the end, I tried bleep dream port mask (hard to get it from france), It was not that easy at the beginning, but with regular usage, discipline and some additional tape, I'm able to sleep with it all night without too much discomfort and virtually 0 leak, even if I found that the Resmed P10 is more silent (when no leak) with less deadspace.

The machine was set up at the beginning in APAP mode with 4-14 range pressure with no EPR, the ramp on automatic.
After 1 month of usage, I decided to manage the pressure by my own according my result and flow rate in Oscar.
According the machine, there is not a lot of pressure required to manage my apnea. On this mode the 95% average pressure on 1 month was inferior to 7.
But my flow rate looks like crap for me and most important thing I didn't feel rested.
So according the knowledge I got from the video of TheLanktLefty27, I started to tried fixed pressure, 7, 8, 9, 10, 11 and then 12, I increased the pressure until I found that my flow rate looks better disregarding of the IAH which was also below 5. In fact I was getting palatal prolapse flow expiration limitation often without understanding what it was, and I increased the pressure once this "ugly" respiratory pattern doesn't show up again, and forgot about it. Then I ordered and AXG Diagnostic, so somebody more expert than me could look at my oscar data, gave me is opinion and recommendation. I got a strongly suspected UARS diagnostic and recommendation to put EPR at 3 fulltime, and increase pressure to 13 for 3 days, 14, then 15.
I applied this recommendation but it didn't improve that much my irregular flow rate and my sleep quality, very fragmented because of arousal, TheLanktLefty27 told me that I need a bilevel machine. I could get a second hand Aircurve 10 Vauto quicky by myself, and start using it. I felt the machine more natural to breath with it, tried to increase the PS to treat the UARS but above 5,2 of PS, I got much more central apnea. I got some exchange by email with TheLanktLefty27, for him, I should use high level of PS but as I got much more central apnea, It went nowhere. I was frustated and also got a second hand Aircurve 10 ASV machine, as I read that some doctor use ASV to treat better the UARS and read also that in the titration resmed protocol, when you increase PS to fix respiratory effort and get central apnea, you should consider using ASV.
So I tried the ASV machine with various PS range and low EPAP, got IAH of 0, but I saw that my respiration was strange again because of "palatal prolapse", and I was afraid that the machine because of using high PS range, put me in central apnea loop where the machine makes the respiratory breath effort instead of me too often
I also saw the last video of TheLankLefty explaining that bilevel in fixed mode with high PS is the best way to manage UARS, so I switched back to AirCurve 10 VAUTO, and tried to roll back the titration since the beginning to analyze deeply the result and increase slowly the PS below 5 to use too and to limit central apnea. 
I saw again the palatal prolapse in the flow rate, tried to understand what It it could be and tried to fix it. 
First solution I got was using an EPAP of 12 or above. In fact, with EPAP below 12, I could find some palate prolapse resp in the flow rate every night with some night where it is much more obvious. 
Then I found velumount (thanks to the forum), I'm using it since 4 nights now with perfect result on Oscar on this regard. Since I used it, I do not have anymore palatal prolapse respiration in the flow rate, even with an EPAP of 4. I use the velumount ring as I'm not able to tape my mouth correctly with the original one, I got some discomfort the first night, increased production of saliva, some pain on the palate and on the gum because of the contact, but it is getting better night after night and I will have 2 other meeting of follow up with velumount for the ajustement of the orthesis to make it hopefully more comfortable 

I hope this thread will be helpful for people with palatal prolapse who can have velumount, and also helpful for me to find the best configuration and setting to treat my sleep apnea with the help of the forum.

I put below my oscar chart on Aircurve 10 VAUTO EPAP 10 PS of 5, EPAP of 15 showing a lot of palate prolapse, see the expiration limitation of the flow rate:

   

Below my oscar chart on Aircurve 10 VAUTO EPAP 10 PS of 5, IPAP over 16 and velumount orthesis, no more palate prolapse expiration respiration at all:

   

[zaienk]

Below how the palatal prolapse looked like during the night at EPAP 10 PS 5 IPAP 15 I showed previously:

   


Below my oscar chart of the last night, I lowered the pressure to an EPAP of 4 PS of 4, IPAP over 12, to see what happen and roll back the titration all again with the usage of velumount, and I feel that it was too low despite of the good IAH, my respiration was very irregular with a lots of arousal:

   

Keep this EPAP and increase PS to 5, increase min EPAP again and right again higher pressure, tried back ASV now I fixed palatal prolapsus with velumount I'm still not decided. 

Best Wishes

[zaienk]

Example of palatal prolapse obstructive event I got with EPAP 5 IPAP 9 fixed pressure with the Aircurve 10 Vauto without velumount:
The flow limitation doesn't appear because of BIPAP-S mode.

Below the whole night. If you look at the IAH, it doesn't look so bad. If you look the flow rate, it is bunky...

   

Below a zoom on the flow rate events with hypopnea, arousal, obstructive event, all induced by palatal prolapse:

   

[zaienk]

Example of palatal prolapse events I got with EPAP min 7 PS 3-12  with the Aircurve 10 CS PaceWave without velumount:

Below the whole night. IAH is 0, leak is 0 with nasal mask and mouth double taped, well done!


   

But .... Look at this, palatal prolapse flow expiration limitation is not detected neither by the machine or Oscar, if you don't look at your flow rate in detail you will probably miss it:

   

[zaienk]

And last post for today, last night with Aircurve 10 Vauto PS of 5 over 4-12. 
I just increased the PS of 1 in comparaison of previous night to see the impact. I got more CA but I always get more CA event the first night after an increase of PS, it usually disappears the following night since I stay below 5,4 of PS. From 5,6 and upper, I get much more CA and it doesn't reduce that much following nights. Unfortunately, I do not have access to trigger parameter, it is not available on european models.
It is the fith night with velumount ring and it is flawless in regard of the traitment of my palatal prolapse. It doesn't show up in any single resp in the flow rate, it always happened before, on a various rate, but it always happened if you look at all the single breath in the flow rate.
I also feel better with it during night, no more pain, my body seems to start to use to it.
The machine didn't work a lot VPAP auto mode, little increase on some flow limitation she founded, Average EPAP of 4,24, 5,5 for the 95% and 6,4 for the 99,5%:

     

The only obstructive event detected is false positive as is it a position change.

My concern is more about these:

   

Arousal every 5 minutes

And respiratory sequence like that which looks like undetected RERA and not during REM:

     

Should that be treated with more pressure? I went up to 15 EPAP 19 IPAP but it doesn't seem to improve that much, what your opinion? Could we call that UARS?

   

[Gideon]

Could you provide a photo or two of the device and describe how it works.

[zaienk]

you can find more information about the non invasive under mattress device I use to monitor my sleep apnea below :
https://media.withings.com/press/press-r..._pr_en.pdf

extract:
Withings, a pioneer of the connected health movement, today announces Sleep Analyzer, an unobtrusive sleep tracker that utilizes the world’s most advanced sensors and technology to analyze sleep and detect sleep apnea, a highly prevalent and underdiagnosed disease. Available in the EU and U.K., after receiving CE marking for medical devices, Sleep Analyzer has been created in conjunction with sleep experts and clinically validated to provide medical-grade analysis and sleep apnea detection all from the comfort of the home. It will be available in the U.S., pending FDA clearance.

Requiring only a one-time setup, Sleep Analyzer includes an advanced sound sensor that specifically tracks snoring signals, one indicator of sleep apnea that’s among the numerous monitored by the mat. When users get up in the morning, they can see if any sleep apnea episodes occurred over night in the accompanying Health Mate app. Results can be easily shared through the app with physicians or sleep specialists for further review and diagnosis.

Sleep Analyzer is a sleek 25” x 7.5” mat that fits seamlessly under the mattress and after a one-time setup automatically provides an in-depth look at users’ nights. Like its predecessor, Withings Sleep, it uses a pneumatic sensor to measure respiratory rate, body movement and continuous heart rate to track users’ sleep cycles (deep, light and REM) and cycle durations as well as users’ overall sleep durations and interruptions. Additionally, it uses the sound sensor to also detect snoring and share with users the number of snoring episodes they experience each night and their durations. Each morning, users can access their Sleep Score in the Health Mate app, which is a simple to understand interpretation of how well they slept that night before, based on sleep duration, depth regularity and interruptions. Along with their Sleep Score, users can see all of their in-depth sleep data in the Health Mate app for each night as well as overarching trends and receive insights into how to better improve their overall sleep. All data collected by Sleep Analyzer can easily be shared with physicians through the Health Mate app. Thanks to an IFTTT integration, users can create home automation scenarios to control lights, temperature and other smart devices just by getting in and out of bed. Availability Sleep Analyzer is available in Europe from April 28 for €129,95 and in the U.K. for £119.95 at withings.com and Amazon and replaces its predecessor Withings Sleep. It will be available in the U.S., following FDA clearance. #

You can find an uk review of the product below :
https://www.theguardian.com/technology/2...-made-easy
Unfortunately for US user, it is no available in america yet because of FDA clearance, only Europe and UK.

I am still impress by this device as the sleep apnea detection is very sensitive. 
When I started CPAP with the range 4-14, my device was still detecting sleep apnea with an IAH much more higher than Resmed, which motivates me to look at the data with Oscar on the SD card, and try to "fix" my flow rate by increasing pressure, make an AXG Diagnostic try Bilevel, ASV etc... 

Below last night with velumount, EPAP 5 PS 4, still no more palatal prolapse breathing
   

Below a little zoom and the second part of the night with the iregular flow rate/tidal volume:
   

More zoom on the flow rate:
   

Could I have your opinion and suggestion on these elements please ?

[zaienk]

   

[zaienk]

little update about velumount ring.
After using it every night for more than 1 week, it doesn't disturb me anymore.
I lowered the pressure to EPAP 4 over 12 and PS 3, I got a very low IAH:

   

Velumount in my case solves the palate prolapse and obstructive event linked to it so I definitely need much less pressure to get a low IAH.

The machine bumps the pressure 10 minutes after I went back to sleep after pee but did not indicate flow limitation, strange.
I feel that I have more deep sleep with high pressure and that flow rate can be more "flat" with high pressure but it also increase my night rest heart rate so I'm not sure that using high pressure to get a more stable flow rate / tidal volume is a good approach?
Well also I put my wall story in that post but maybe for the documentation I should create an other one focused on result before/after velumount, sorry.


Best wishes

[G. Szabo]

Hi there, 
This Velemount ring can be a solution for many of us. Thank you for the details. 
Am I correct that you had to go to Switzerland to get it and make some revisiting for adjustment? How many days and traves were included in the whole procedure?
What about the cost of the ring and for customizing?
Thanks