I've posted a few times about my cpap therapy not working. I've been trying to make it work for about a year now, with no luck in terms of it stopping me from having many hypopnea events. I'm in an unusual situation, so this is going to be a long one.
I've used my apap machine every night with full compliance, no removing it at night or anything. I've tried using a nasal mask, but I find them way way more difficult to deal with than full face masks, so I've been using the ffm. My settings are currently for a constant pressure of 18 with no ramp and EPR set to level 3. Before you immediately say that I need to change settings, I've tried every setting. I've tried using the auto features with all kinds of ranges, I've looked and relooked at data, etc etc etc. I've wrestled with this for a year now. I assure you, a constant 18 is the best I can make it work, and even then it still isn't stopping my hypopneas. No mask leaks. My AHI ranges from 0.1 to 4.0, which also makes people not believe me when I say that this isn't working. The problem is that I'm not having apneas, I'm having hypopneas, which are when you basically wake up before your airway closes long enough to consider it an apnea. This is why my machine's data isn't very helpful and why it says I have a good AHI even though I'm still having all of these disturbance events.
Here is a paragraph from a previous thread explaining UARS and how the events work:
viewtopic.php?f=1&t=157037&p=1202079&hi ... e#p1202079
"Unlike sleep apnea where you have obstruction, apnea, then arousal, UARS patients typically have mostly obstructions and then arousals. As mentioned previously, all UARS patients have some form of fatigue, almost all state that they are “light sleepers,” and almost invariably, they don’t like to sleep on their backs. In some cases, they actually can’t. Some people attribute their poor quality sleep to insomnia, stress or working too much. Due to repetitive arousals at night, especially during the deeper levels of sleep, one is unable to get the required deep, restorative sleep that one needs to feel refreshed in the morning. In most cases, the anatomic reason for this collapse is the tongue. There are many reasons for the tongue to cause obstruction including being too large or being overweight. But once it occurs, the only thing you can do is to wake up.
In deeper levels of sleep, especially during REM sleep, the normal protective layers of muscle tone that keeps your airway open during inspiration diminishes. So, if your airway is normal to begin with and you take a deep breath in, a vacuum-like pressure is set up and the back of your tongue can fall back completely. In many cases, whenever I examined this narrowed airway with the patient lying flat on his or her back, all I see is a 1-2mm slit between the back of the tongue and the throat.
When awake, you’re fine, but once you start to fall asleep, the tongue falls back and you wake up, either fully or subconsciously. This is why so many people can’t fall asleep on their backs and therefore, have unconsciously trained themselves to roll over to their side or their stomach where the tongue collapse is less likely, although it can still happen. This can happen 10, 20 or 30 times every hour preventing you from sustaining deep sleep. You may realize that you are waking up sometimes, but the vast majority of arousals are subconscious. If this happens for a few nights in a row and you return to your normal sleep habits, you’re fine. But if it occurs continuously for months or years, then certain events can happen."
I should also include that I had a mandibular advancement device made by a sleep dentist and I wear it in addition to the ffm cpap, since I do have an overbite. It also improves but doesn't resolve the problem.
So after trying these two separate solutions at the same time and having that not stop me from having these frequent hypopneas as soon as I start to fall aslpeep, I've been really struggling to figure out what's happening in my throat physically. I've done a lot of research with very few results in terms to what to do when both of these solutions fail to work, especially since most troubleshooting cpap involves comfort and compliance issues, when for me, I'm fully adjusted to the sleep gear and am using everything correctly, it's a problem of it not being effective.
Finally, I came across this blog post:
http://joerogan.net/blog/sleep-apnea-an ... t-tongue-2
It's this guy explaining that his apnea is mainly caused by a disproportionately large tongue and how he found a newly developed device specifically designed for that problem, which depresses the tongue and keeps it from closing the airway. (The guy is actually Joe Rogan, a minor celebrity that does a lot of podcasts and stand up. That isn't really relevant, but I thought it was funny and interesting that this random blog result happened to be a famous person.)
After some more digging I've found that that seems to be the most likely reason I'm still having problems. Having both an overbite AND a large tongue makes it such that the MAD isn't quite compensating enough to keep my airway open, and while cpap keeps your actual esophagus open, the tongue is this large and heavy muscle that will definitely still close the airway if it's way too big, no matter how high you put the pressure.
Apparently, you can tell if you have a disproportionately large tongue if you stick it out and can't easily see your uvula or if you consistently have teeth impressions around the end of it. Both are the case for me.
Then I had some trouble finding the exact name and place to buy the type of device, and it turns out that it's because it's the newest apnea device and is still in the final stages of development, so not a lot of people know about it. I did some more digging and found the office of the inventor in California. Called them and they said that they've been improving it for the last 15 years and are now finally ready to sell a commercial model in a few months.
It's called the Full Breath Solution. Here's a link to a brief paragraph explaining what it is:
http://www.sleepapneaberkeley.com/?p=991
And here's a picture of one
I then went to my sleep dentist and talked to them about seeing if they could add this tongue depressing feature to my MAD to see if that finally fixes my problem. They said that they could definitely figure something out and have been in contact with the full breath office to make arrangements to do that. As of now, I'm waiting to hear back from them sometime in the next week or so to hear the cost and logistics of making it happen.
So that brings me to today. I'm really hoping with all my being that this is finally going to work for me, since I'm truly so exhausted and stressed from this that it's destroying my quality of life. I wanted to explain all of this in case someone has problems with being resistant to conventional apnea treatments and can hopefully benefit from this info.
Has anyone here experienced anything like this? Have you heard of or tried this full breath tongue depressing device? Have any of you had problems where cpap just wouldn't actually work, despite your using it all correctly and trying everything in your power to adjust the settings properly? Your thoughts and input would be appreciated.
Unrelated but also: I just noticed the past 2 nights or so that sleeping on my back actually seems to be better than sleeping on my side. I find side sleeping more comfortable and have heard much much more often from apnea people that sleeping on your side is better for lowering your AHI than back sleeping and that you should avoid back sleeping as much as possible. It's odd that it's looking like it's the opposite for me after all. Does that say anything about what the cause of my apnea could be? Any opinions or info on sleep position and whether side or back sleeping is better? I'm thinking it might be that sleeping on your side with a ffm affects how well the pressure travels through the airway, but that's just my best guess.
There is a dramatic difference between how well rested I feel with vs. without the cough drop. 
