A Last-Ditch Attempt - Ideas/Suggestions

[ardenum]

Hello, So much surgery for someone still growing, that might have messed up alot. Your AHI after all this is worse then at the beginning.

Here's another cause for nighttime apnoe's :

https://www.verywellhealth.com/what-is-s...sm-3014748
http://scarysymptoms.com/2017/10/sleep-a...yngospasm/

So things to check now:

- Vocal cord dysfunction, sensitivity etc.
- Sleep related uni/bilateral vocal cord palsy
  https://www.sleepmedres.org/journal/view.php?number=21

- Laryngopharyngeal reflux (not GERD) , makes your larynx sensitive and it can go into spasms


Question : Did you have Sleep Endoscopy? (https://www.sciencedirect.com/science/ar...9616301958)

[adinbied]

Have you ever tried more pressure support?  Your current therapy is using an auto BiPAP in fixed mode at 12/8 pressure.  This seems to work well except for your rather poor tidal volume, which might be more appropriate for a very small person, female or Asian individual.   Have you ever tried increasing IPAP or pressure support in order to increase ventilation?  Also, that 45 minute ramp is really long.  Maybe cut it back to 20 minutes?

Your AHI is fine, no problem with leaks and all aspects of the therapy look good  What do you think causes you to take of the mask?  This sounds more like a behavior modification problem than a therapy problem.

Yeah, I've attatched a picture of pressure history data from SleepyHead. We've tried 12/8 up to 20/13. If I am remembering correctly, tidal volume is the volume of air passing through the lungs on exhale (correct me if I'm wrong). What might cause a low tidal volume? Just low pressure? or is there another setting that might affect that? Also, how much of an effect does the ramp time have? I had set it to 45 mins when I was at 20/13 and never changed it back; I thought the pressure ramp was just a comfort setting.

As far as taking the mask off, I have no idea. I don't think it's a comfort issue, as I have worn the mask connected to the machine while working throughout the day, and I barely notice it's there. As I'm falling asleep, it is perfectly comfortable, and I always fall asleep with the mask on. I've tried the Amara View Full Face Mask, Qauttro Air mask, and the Airfit mask, all of which I've had the same problem. I go to bed with it on, I wake up with it off. And not just torn off, but in separate pieces. I've tried combating this by literally duct-taping the mask to my head, and yet somehow, I managed to yank it and the duct tape off of my face in my sleep. I've tried various clasps, velcroes, etc. So I'm completely stumpted as to why I pull it off. The current theory (in unscientific terms) is that after an apnea/hypopnea episode, my brain "wakes up" and goes "Ahhh, I can't breathe get this thing off of me", but because it occurs in my sleep without me being aware of it, troubleshooting has been difficult.

A second thought...if you zoom into the flow rate graph at a 2-minute or less period, we can see what  your breathing wave-form look like. It's possible there is something there that might explain your discomfort.

Alright, I've attatched that as well.

Finally, just another thanks to everyone on the forum, hearing that there might still be options is a breath of fresh air (pun intended).
Thanks!

[adinbied]

Last ditch attempt!!! NO, keep on trying and if you download sleepyhead and post some data we might be able to help.
NEVER give up, there is always a way to get better results, better numbers and best of all, feeling better at the end of a good fight.
Try, try and try again until you win the fight. I had a bit of a fight, mostly with masks and telling the doctors I needed more pressure, but that was many moons ago and there was no forums then, so you will know how long ago it was.
I made it in the end, took a year, I wish there had been forums like this back then.
Keep trying and when you crack it you will look back like I did and wonder what all the fuss was about and when you remember how you used to feel you might wonder how you got through feeling like crap every day.

Gee, thinking back at how I was! EEK!

I see you have posted one chart already, well done and a smack on the wrists to me for jumping ahead!

Thanks for the words of encouragement. I wasn't intending "last ditch attempt" to come across as "after this I'm giving up"; I like to see this is a puzzle or challenge, and (especially because it impacts my daily life), I strongly believe that this is solvable, although I don't know how long it will take. No worries about jumping ahead!

Hello, So much surgery for someone still growing, that might have messed up alot. Your AHI after all this is worse then at the beginning.

Here's another cause for nighttime apnoe's :

(Links Removed due to forum rules not allowing new users to post links)

So things to check now:

- Vocal cord dysfunction, sensitivity etc.
- Sleep related uni/bilateral vocal cord palsy
  (Link Removed due to forum rules not allowing new users to post links)

- Laryngopharyngeal reflux (not GERD) , makes your larynx sensitive and it can go into spasms


Question : Did you have Sleep Endoscopy? (Link Removed due to forum rules not allowing new users to post links)

Yeah, it's been annoying; although the surgeries were performed with that in mind, and based on meetings with various doctors, everything should be settled by now and won't move. The AHI thing is also interesting, no idea why that happened - there are too many variables to know for sure.

As far as the links / things to check out: Never even considered those as possibilites. From a quick glance, it looks like they should show up on a PSG; given that I've had 9 sleep studies, shouldn't have one of those been obvious? Or are there other tests? I'll do some more research and talk to people - the more data I can assemble, the easier it will be to find the issue.

I've had 2 sleep endoscopies, one in 2014 and another a few months ago. I have copies of the photos from the most recent one if interested; I can't find the summary from the most recent endoscopy, but here are the notes from the 2014 one:

Soft palate webbed, h/o VP collapse on SE (before MMA)
b. Macroglossia of the oral tongue and tongue base, h/o BOT collapse
on SE (before MMA)
c. Retroflexed epiglottis
d. Other possible residual anatomic and functional abnormalities to be
determined by sleep endoscopy: posterior nasal obstruction (eg, MMA
scar), palatal collapse, lingual tonsil hypertrophy, tongue base
hypertrophy/collapse, lateral pharyngeal collapse, epiglottis collapse,
supraglottic collapse, or others.


Hope that's of some help, and thanks for the response!

[foxfire]

I bought a night night vision security camera (<$100) to video myself sleeping to see how much I moved.

You may get some insight into why you are taking off the mask by videoing yourself.

[adinbied]

I bought a night night vision security camera (<$100) to video myself sleeping to see how much I moved.

You may get some insight into why you are taking off the mask by videoing yourself.

I did that as well, however I wasn't able to get much info. I'm laying asleep, jerk awake, flail my arms around for a few seconds, then reach over and pull my mask off (either by disconnecting the lower straps and tossing it on the floor, or by disconnecting the hose from the machine and sliding the mask off of the front of my face). I can upload the video file if that might be of assistance, idk.

[Sleeprider]

I looked at the flow chart and pressure history. The 14/8.5 IPAP/EPAP looks promising, but good results don't seem to reflect on how you feel. I'm kind of at a loss.

[mdhampton]

Maybe someone else with more experience can help with this, bu I've seen posts that EAP can cause a sense of suffocating. I've never used it or ramp, as I started years ago with a pressure of 12, not even sure the equipment I had then even supported it. Maybe decreasing the difference between EAP and max will help; it appears you do a bit better (at least with AHI) with that. I'm at the point now where I can't sleep without the machine.

I wish I could help more.

[mdhampton]

Another question, do you dream?

[foxfire]

What were your PLM Index and PLM arousal index from you sleep studies?

[DriverLou]

Wow, consider a career as a sleep doctor. I too have had bilateral TMJ replacement, they needed to replace joint from being broken once to often so they set foward aswell as a chin modification. I now have Inspire and love it. One point I would ask about is your epiglottis, you are pulling your mask which is the body's reaction to lack of breath. I had 85% of the epiglottis removed, my symptoms were different. Keep us posted.