At my wits end, ready to give up

[MX117]

This might be a long post so please bare with me. Any help/insight is greatly needed and appreciated.


I'm 31M, 6'1", 205lbs, 12-15% bf, muscular build. Very active (weightlifting & martial arts) and in shape.

I've snored ever since I was a teenager. Had my tonsils and adenoids removed as a young child. Always dealt with sinus issues off and on. Over the last 5-10 years my sleep quality has really deteriorated. I clinch my jaw during sleep, wake up with headaches, always feel groggy in the morning no matter whether I slept 5 hours or 12 hours. I actually tend to feel worse the longer that I've slept.

At the beginning of this year I began looking into sleep apnea and it's like a light bulb went off in my head. "That's my problem!" is what I thought so I made an appointment with the ENT. I answered a questionnaire, had all the symptoms, and so he ordered an at home sleep test for me. To my dismay, a few weeks later I get a call from the ENT office telling me my sleep study results were "normal". I couldn't believe it.

I have a general lack of confidence in doctors, and so I went out on my own to do my own research and try to figure out what could possibly be my problem. Then I discovered UARS and that it often flies under the radar and doesn't show up on sleep studies. So after watching a ton of youtube videos and general researching, I made the dive in and bought a Resmed Aircurve 10, and then paid around $400 for a consultation with LeftyLanky off of youtube as he seems to be very knowledgable.

He reviewed my OSCAR data at my initial CPAP settings of VAuto 8/12 with a max of 20 and recommended switching to S mode and starting at 10/14 due to my initial settings still resulting in many instances of RERAs although not full blown apneas (said the machine would shoot up to 20 to try to clear but not with much success - thought I needed a higher constant pressure to prevent them). I tried the new settings for 3 days, but immediately starting getting severe aerophagia (using Resmed Airtouch F20). LeftyLanky reviewed the couple of nights I had at S 10/14 and saw that it still wasn't able to resolve the RERAs. He recommended moving up to 12/16 and getting a nasal mask to help with the aerophagia, so I did (F&P Brevida). I got the mask in, tried it on, and was immediately impressed with how comfortable it was. My hopes were high.

The next few nights at 12/16 with the Brevida we're horrible. As soon as I was on the brink of falling asleep, my mouth would burst open with air. I tried only laying on my side, taping my mouth, using a cervical collar - nothing helped. I could not get any usable data to review on OSCAR. None. No sleep with it.

From that point on, LeftyLanky has been really hard to get ahold of and I'm basically left on my own now.

I'm not even sure what my questions are but I'm just desperate for help. How the hell do I sleep through the night without my mouth bursting open? I can't use the full face mask - the aerophagia was bad enough using VAuto at 8/12(20) - I can only imagine how bad it'd be in S mode at 12/16. Has anyone went through something similar? Any tips or advice? I feel like just giving up on CPAP, but my quality of life without this issue being resolved is just p*** poor.

[staceyburke]

giving you suggestions without seeing data would be just guess work.  We use data from OSCAR totally free at the top of the site.  You must have an SD card in the machine while you sleep to record the data.  The cad has to be 32 MB or smaller.

The charts we need to see from OSCAR is in my signature at the bottom of the page.  Put up those and you will get help on this site.

[MX117]

giving you suggestions without seeing data would be just guess work.  We use data from OSCAR totally free at the top of the site.  You must have an SD card in the machine while you sleep to record the data.  The cad has to be 32 MB or smaller.

The charts we need to see from OSCAR is in my signature at the bottom of the page.  Put up those and you will get help on this site.

As noted in my post, I can't even get reliable OSCAR data because I can't fall asleep due to my tongue losing the seal and air bursting through my mouth right as I'm on the verge of falling asleep.

[staceyburke]

A lot of people tape their mouth.  Do a search and read a little bit about it.  I never had that problem but like I said there are many here that do tape.

[MX117]

A lot of people tape their mouth.  Do a search and read a little bit about it.  I never had that problem but like I said there are many here that do tape.

At this point I'm just going to assume you didn't even read my whole post.

[Sleeprider]

Mx117, if you would like to start over with a new titration, I'd like to help. Our first objective needs to be to find a lower pressure where obstructive events are resolved, and a pressure support that resolves the flow limits. With predominately UARS (flow limitation), I fine high EPAP pressure are often unnecessary, and we can get good results at much lower settings. So that we're on the same page, we typically use EPAP for obstruction and pressure support for flow limits, RERA, hypopnea and snores. Low pressure may also make keeping the seal with your mask easier. You seem to be using a full-face already, so I'm surprised mouth leaks are such a problem, but you may want to try the Resmed Airfit F-40 if you need a mask alternative. The support of your jaw can help you maintain the seal with your tongue without tape, and I will often use a corner of a down pillow between my shoulder and jaw to do that. The airline collars can also put pressure on the jaw, or for a good vertical pull on the jaw, Supplier #37 has a double chinstrap solution. Anyway, to get started, if you would like to try Vauto mode, EPAP min 6.0, Max pressure 12.0 and PS 4.0, I'm sure we can dial you in if you can avoid the leak issue.

[ChadBSr]

I use a soft cervical collar to keep my chin closed. Mouth tape was difficult for me, I found a MouthShield was better and I could still release pressure if I really needed. The main thing was I stopped mouth breathing during the day and practice keeping my tongue on the roof of my mouth. You can't consciously control your breathing at night, but changing your daytime breathing will slowly change your sleep breathing. As others said lower pressure will help.  You may have to start low and work up.

[staceyburke]

Yes I did read it.  I thought you might pick up how other people were able to use tape from their posts.  Like I said I don't have that problem but many people do and it works for them...

[jdougc]

Mx117,
Please give the setting that Sleeprider gave you a try and don't give up.  
You have indicated that you have snored since being a teenager and other issues.  Cpap therapy is not a magic bullet, but it  is a journey that these fine people are willing to help your on. Hopefully you get some relief.
Finally, are you on medications or have any symptoms that may impact your sleep.

[MX117]

Mx117, if you would like to start over with a new titration, I'd like to help. Our first objective needs to be to find a lower pressure where obstructive events are resolved, and a pressure support that resolves the flow limits.  With predominately UARS (flow limitation), I fine high EPAP pressure are often unnecessary, and we can get good results at much lower settings.  So that we're on the same page, we typically use EPAP for obstruction and pressure support for flow limits, RERA, hypopnea and snores.  Low pressure may also make keeping the seal with your mask easier. You seem to be using a full-face already, so I'm surprised mouth leaks are such a problem, but you may want to try the Resmed Airfit F-40 if you need a mask alternative.  The support of your jaw can help you maintain the seal with your tongue without tape,  and I will often use a corner of a down pillow between my shoulder and jaw to do that.  The airline collars can also put pressure on the jaw, or for a good vertical pull on the jaw, Supplier #37 has a double chinstrap solution.  Anyway, to get started, if you would like to try Vauto mode, EPAP min 6.0, Max pressure 12.0 and PS 4.0, I'm sure we can dial you in if you can avoid the leak issue.

Thank you for the offer to help me out. I know in my profile it says that I'm using a full face, but in my post I detail that I actually switched to a nasal mask due to the aerophagia I was getting when using the full face mask at the higher pressures. 

The OSCAR data attached is from using the full face mask when i first started at the lower pressure you recommended. I posted a magnified section of my flow rate so that you could see where the wavelengths are being capped off at the top and not smooth and rounded.