New to the forums

[Rebuc]

Hi all, I've been browsing the site for a few days and figured it was time to make an intro.

I was diagnosed with OSA about 5 years ago, and I've had CPAP, APAP, and BIPAP machines, and also tried a few different mouth appliances to to try and find a way to keep my airway open, but nothing has seemed to work, or even help to any degree at all.

On the CPAP machines, the only mask I was ever able to wear for any length of time was a "Dream Mask" (?), the one that has the hose mount on your forehead with soft tubes that run down both sides of the face to a nose-piece with a single slit that just covers the nostrils.  I absolutely despise anything on my face (I wear glasses and am painfully aware of them every second of the day), so this style was the only thing that I could keep on for more than a few minutes.  

My AHI is currently at about 75, so my apnea is severe, but so far nothing has even began to help.  When I tried the various CPAP machines, I could only manage about an hour each night before I'd rip it off and throw it across the room.  My doctors kept encouraging me to keep trying, and after about 3 years of trying, I gave up on it.  The feeling of not being able to breathe on my own, feeling like I was drowning in air when I woke up, even having them adjust the pressures countless times, I'd wake up gasping for a breathe due to it feeling like I was being forced to take in air rather than being natural...I just never could get used to it ('tolerate' as they liked to say), plus not liking anything on my face (even something as simple as a breathe-right strip on my nose, I'd get maybe 30 minutes before I'd rip it off)...so I moved on to other approaches.

Over the last year, I've tried a few oral appliances, trying to see if they could do anything better, but no luck on that front either.

The first one had two pieces attached by a piece on the side (called the Silent Nite I believe), and with it in, it was supposed to help adjust my jaw into a better position that would allow my airway to keep open, but I kept waking up with it detached from my teeth (I'd force my jaw apart while I was asleep and wake up with the appliance just dangling from my upper jaw)...I could barely pull it apart while awake, yet somehow I could force my jaw open during sleep.

The Doctor at the university I had gone to was surprised in that, and tried some modifications, but nothing worked, so he suggested we try a different model that had a better locking mechanism in the front. That one also didn't work. It would take me a few minutes to line up this small metal pin into a keyhole style opening in order to get it all in place before I went to bed...yet during sleep, I was somehow able to unlock it very easy...so again, this one didn't work either (that one was the TAP 3).  Like the first one, I'd wake up with it detached from my jaw...somehow, despite it being a pain to get the little key thing lined up, I became a master locksmith in my sleep

That doctor called me a mouth breather, and that in reality, an oral appliance wouldn't work for someone like me.  He suggested a CPAP would be better, but after explaining my history about them, he basically shrugged his shoulders and said he didn't know if anything would really work for me in that case.

A few weeks back, I was referred to an ENT to see if any kind of surgery would be an option, but aside from a tracheostomy (which I'm not doing), he's not confident anything will really help me.

I asked about any other kinds of treatment, was there anything else we hadn't considered yet, something...anything??  I had read about an implant that connects via small leads to the muscle tissue in the throat, and it's meant to give a subtle shock when the tissue relaxes and closes, but he said it was largely untested, still a relatively new procedure, and that it hadn't been proven yet to really be effective since more than one area of tissue....basically I'd have to have mouthful of leads in order to cover all areas that could be the leading to the airway collapse...

So, I'm once again at a point where I have nothing that can help.  All the treatments I've attempted have failed without even the smallest bit of possibility that it could eventually work.  As I was looking online (again) for anything new, I came across this site.  From what it looks like, most everyone here has managed some success with a CPAP, which is awesome (for all of you), but I'm hoping to find some other ideas I can look at as well.

I've been told the standard "lose weight" story from most of my doctors, and in general I'm trying to lose a bit just to have a better quality of life (I'm 46), but I've also had sleep issues all my life...even when I was at about 6% body fat in the Navy, so I'm not convinced weight is the issue, but having been an athlete the majority of my life, I do know the benefits of a healthier lifestyle (damn computer job has me sitting nearly all day now), so I'm at least working on that some

Anyway, I wanted to introduce myself, share my story and where I'm at.  Not really sure what's next for me, I'm going to go back to my sleep specialist here soon to follow up after my visit with the ENT, but I'm not sure what else there is after having exhausted all the normal treatments and options.  I'm at the point now where I'm more tired each morning that I was when I went to bed, I do touch-and-go's all day at work trying to keep awake, and my wife now drives anywhere we go that's at distance due to being scared I'll fall asleep at the wheel.

It all just really sucks, but I'm not sure what to do next.

[Marillion]

Hello and welcome to our forum! Congratulations on taking this first step to improve things for yourself. I'm sorry to hear about all your difficulties. It must be very frustrating for you! Not to mention dangerous with regards to being able to drive.

While the Phillips Dreamwear mask is considered one of the more minimal masks there are other choices such as the Resmed Airfit P10 nasal pillows mask. It is considered by many (including myself) to be THE most minimal mask to use. It is the one I found to be the least intrusive and lightest on my face. I tried many masks but this one by far was the most comfortable.

Personally, I would encourage you to give the APAP machine another try. Only this time I would encourage you to stay in touch with us here. Post the data using Sleepyhead software and we could give you some real concrete tips to make the therapy more comfortable and effective. Ultimately, that is what I believe will give you the most chances for success. Not oral appliances or surgery.

I have gotten to the point that I fall asleep much faster as well as sleep far better with my machine than I ever did without in recent years. If your settings and adjustments are correct on your machine for you the treatment is far more comfortable and easier to get used to. That is the direction I would advise you to go, but others will be along shortly I am sure to also give you their opinions.

[Sleeprider]

Have you ever tried a soft cervical collar. We have had members with severe obstructive apnea and hypopnea achieve some amazing results, combining a soft cervical collar with their CPAP / BPAP. I think it's worth a try. One of the minimal ones is the Dr. Dakota Snore Stop, which has just a good stiff support that fits under your jaw, but does not wrap around your neck. There are many styles, but the principle is the same; the device maintains your airway while you sleep so you can breath. The gentle pressure on the rear of the jaw also helps stop leaks and users consider them very comfortable. Not bad for $25. I would start with that and perhaps even consider using a cervical collar generally intended for neck injury if that doesn't solve the problem.

It would be great if some of our members with 30 plus AHI before the collar, and less than 4 after collar could show you their results.

[Rebuc]

The Dr. Dakota thing looks interesting, but I'm not sure I'd be able to keep it on for very long...as I said, I hate anything on my face, and that extends to my neck as well.  I can't wear a necklace, even a lanyard for holding a badge (I wind up pinning it to my shirt and taking it off my neck), I can't even stand wearing shirts with collars.

Not to be a downer on the suggestion, I just know myself and putting anything around my neck, head, face...I can't sleep with that (part of why my CPAP is bagged up and in the closet for the past year).

[Sleeprider]

Let me just say you will hear testimonials from many members here that the collar changed their life. It sure beats a tracheostomy. There is a pretty good Youtube video review. I can't link it due to commercial rules here, but if you look for the Dr Dakota Stop Snore on Youtube l1rM5XIje6M is the first result. I think this video addresses your concerns and is worth a watch.

[Gary1of2]

Maybe you should try wearing the mask and plugged in while you are awake watching tv or reading to help get a custom to it.

[Coffee Man]

All the treatments I've attempted have failed without even the smallest bit of possibility that it could eventually work.  

With all due respect, I don't think you could say that treatment has failed. You admit not wearing the PAP masks for any significant duration before removing them. So, there is a good chance that if you wore the mask throughout the night, you could very well have improvement. As other posters have suggested, try wearing the mask (with the machine turned on) while you are awake so your body becomes acclimated to the mask being on your face and you get used to breathing with the mask. Once you are accustomed to the mask, you should be able to tolerate falling asleep with it. It takes a while to get used to the mask. I'm just over three months of therapy, but remember the first night thinking I'd never be able to fall asleep wearing the mask. At this point, it is second nature to fall asleep with the mask on.

[Rebuc]

All the treatments I've attempted have failed without even the smallest bit of possibility that it could eventually work.  

With all due respect, I don't think you could say that treatment has failed. You admit not wearing the PAP masks for any significant duration before removing them. So, there is a good chance that if you wore the mask throughout the night, you could very well have improvement. As other posters have suggested, try wearing the mask (with the machine turned on) while you are awake so your body becomes acclimated to the mask being on your face and you get used to breathing with the mask. Once you are accustomed to the mask, you should be able to tolerate falling asleep with it. It takes a while to get used to the mask. I'm just over three months of therapy, but remember the first night thinking I'd never be able to fall asleep wearing the mask. At this point, it is second nature to fall asleep with the mask on.

I have actually tried wearing it while awake...my sleep specialist suggested exactly what you and someone else mentioned, I put it on and watched tv for awhile then tried to go to sleep (I tried both with just the mask on, and also with it on and the machine running), but I still couldn't keep it on for any length of time.

And to be clear, I tried wearing it each night for nearly a year, but I never could get to where I could wear it asleep for more than a short while.  It's not like I only tried for a few weeks, it was almost a year of trying each and every night.

[Walla Walla]

I think it's time to suck it up and get back on the machine. Use a Resmed Airfit P10 nasal pillow mask as has already been mentioned. Instead of looking for a way out, your going to have to come to grips with it and wear a mask. If you don't you'll some day end up in a hospital with .... you guessed it .... a mask strapped to your face.

[AlanE]

P10 was what I ended up going to after wearing the Liberty for a year. So much better and you can still wear your glasses with it. I also use a hose management system to keep the hose from wrapping around my neck when I toss/turn and I have a buckwheat pillow that was made for CPAP users. After 3 years I can't sleep without my mask on now.