After 2 years, I *FINALLY* got a restful night's sleep!

[schleima]

Hello Cpapers

For those who helped me in the past (Slinky, Rested Gal, Nighthawkeye, et al.) you may want to click this link as a refresher:
viewtopic/t41893/viewtopic.php?t=30741

Well, my long battle with CPAP has finally drawn to a close.

My battle began in late 2007 when I discovered this forum and had my first sleep study in Jan 2008. I experienced the nightmarish, incestuous frustration of the CPAP doctor/durable medical goods system. They fought me at every step of the way. I struggled with masks and hoses. Mask after mask after mask... all of them seemed horribly uncomfortable no matter how I adjusted them, and the pressure of the tube on my upper lip kept me up sometimes for hours. I wound up with a good set-- a Resmed S8 Elite II with heated humidifier and the Swift LT mask, which minimized the upper lip pressure, and the hose over the head was more bearable for my stomach sleeping position. However, the heated humidification felt like I was breathing in swampy hot air, but if I didn't use it I would wake up with an unbearably dry throat. But the worst part is that in the almost 2 years I've had CPAP, I've only been able to fall asleep restfully about 3 times. In general, what happens is that I lie there in bed, sometimes for hours, drifting in and out of unrestful twilight sleep. Eventually I rip the mask off. Even sleeping with apneas is better than a night of twilight sleep. The only way that I have ever been able to sleep through the night is if I take a dose of Nyquil before bed, and I'm not very excited about drugging myself to sleep. I would do that only on the nights where my fatigue was just so unbearable that I needed to force myself into sleep so the CPAP would work. I saw a pulmonologist who recommended some other doctors... I saw an ENT specialist who examined my chronically inflamed sinuses and suggested surgery to laser them back, so CPAP air would flow easier. I've been seeing an allergist who prescribed allergy shots that I've been taking twice a week now for 10 months to help me breathe better. CPAP has taken up 2 years of my life, experimenting with masks and settings, with multiple doctors poking, prodding, tests, 3 different sleep doctors, arguing with several DME providers, taking time off from work, and for what? This whole process was so complicated and confusing, but I never gave up entirely.

I got a lot of encouragement and advice from this forum, for which I am thankful. I clung to that dream that many people say... "keep at it-- eventually you'll get used to it and it will change your life." That guy that sells the Pur-Sleep aromatherapy sent me a sample trial kit, saying if I filled out a survey that I could keep it for free. I'm grateful for his generosity (and he never did send me that survey) but I really did find minimal benefit to that product (which is supposed to work by distracting your brain just long enough to get you to fall asleep with the wind zipping up your nose). It smelled nice, but I still had plenty of twilight sleep nights using the oils.

Finally I decided to try a new sleep doctor. I told him my story, fully expecting no new information. His answer... "If you're struggling with CPAP so much, why don't we try something different?" He recommended a mandibular repositining device-- a relatively new therapy for sleep apnea which is 1,000 times less invasive than CPAP. No hoses, no wind, no masks, no 1,000 different settings to figure out how to tweak before you finally get to sleep. It's custom molded to your mouth and looks like a dental/orthodontic retainer. The problem is that it costs around $2,000. It's made by dentists who specialize in sleep apnea, and dental insurance does not cover it. It works by shifting your jaw forward just a tiny bit, which repositions your mouth so your soft palate cannot collapse... same as CPAP, but it's achieved by mechanical means rather than by air pressure.

He recommended a dentist and I was seriously considering going out of pocket for this, but then I was told that there are some oral/maxillofacial surgeons who specialize in sleep apnea and make these devices. I found one who was on my major medical insurance network (Blue Cross Anthem), and the whole thing was paid for at 100%.

I got my device last night... snapped in on to my mouth about an hour before bedtime (in order to get used to it... I tip I got from people here about wearing CPAP masks an hour before bedtime). For those of you who have never worn dental retainers, it's a very strange sensation having something clamped to your teeth, but after about 30 minutes the distraction was minimal.

I fell asleep easily wearing the device, and woke up feeling wonderfully refreshed... as refreshed as I felt on those rare occasions when I had a good night on the CPAP!

Thanks to everybody for your help and encouragement... hopefully my story can offer a different perspective in helping some new people find a peaceful night's sleep.

[5aces]

I reckon a Dental Device is worth looking into if you are a candidate.

Perhaps it is my next stop too.Thanks for the update!

[forwhatyoudreamof]

Thank you for sharing for story with us schleima!
I'm really happy for you that the dental device worked, please keep us updated on how you feel on the rest of the week!

I'm in a similiar situation as yourself and hearing your story gives me a fresh ray of hope.

Restful dreams..


Andy

[schleima]

Thank you for sharing for story with us schleima!
I'm really happy for you that the dental device worked, please keep us updated on how you feel on the rest of the week!

I'm in a similiar situation as yourself and hearing your story gives me a fresh ray of hope.

Restful dreams..


Andy

I will absolutely be sure to do that.

Hoses begone!

[rested gal]

schleima, thanks so much for coming back and giving everyone an update.

I'm thrilled to hear that a dental device seems to be getting the job done for you. I hope your sleep doctor plans one more sleep study with the dental device in place, just to be sure. Or at the very least, an over night recording oximeter test.

At any rate, I know how you tried...you really did try very hard, and for a long time, to make CPAP work for you. Glad that a dental device may be your answer. That was effective for snork1, too. The Titantium TAP device works well for him.

Sweet dreams, schleima!

[sleepyprm]

OMG, I've been fighting with myh CPAP machine for two years. I'm going to look into this. thank you!

[schleima]

schleima, thanks so much for coming back and giving everyone an update.

I'm thrilled to hear that a dental device seems to be getting the job done for you. I hope your sleep doctor plans one more sleep study with the dental device in place, just to be sure. Or at the very least, an over night recording oximeter test.

At any rate, I know how you tried...you really did try very hard, and for a long time, to make CPAP work for you. Glad that a dental device may be your answer. That was effective for snork1, too. The Titantium TAP device works well for him.

Sweet dreams, schleima!

I very much want to have another sleep study done once I've had a chance to sleep with the device for several weeks. But I can absolutely tell that it worked... I felt like I did after my initial titration study, waking up with a gloriously clear mind for the first time in a long while.

This was just my first night, so I'll have to keep an eye on the TMJ (jaw pain) issues-- I didn't experience any pain with the device, but it did take a few minutes to warm up my jaw in the morning. It will be interesting to see if and how it affects me in the long term (and if this potential pain is worth the tradeoff of a good night's sleep)

But overall, the process of getting the MRD (and using it) was just so much simpler. It's *so* easy to fall asleep with when compared with those long, nerve wracking CPAP hours, wondering if I was going to get to sleep tonight. The MRD worked so much more quickly... the disheartening part about my CPAP experience is that there are so many adjustments and settings to tweak, so it's easy to keep blaming yourself ("well, maybe if I just try this mask, or this one, or this... or maybe if I wear the tube on the left, or right, or above my head... or maybe if I use this chin strap... or maybe I should tape my mouth... or maybe if I turn the humidification heat down... or maybe if, if, if, if). There are 1,000,000 variables that it's like trying to tune in to a radio station whose frequency is constantly changing. It wears you out. And quite frankly it's a bit upsetting to me that the MRD wasn't offered to me a year ago, as an option equal to CPAP (rather than as a secondary or last ditch measure before surgery). I had to endure another year of bad sleep, fighting with the machine, all the while holding on to the faith that CPAP was going to work for me someday.

Anyway, maybe I'll wake up with TMJ tomorrow and I'll take back everything I've said here (but I hope not!

[schleima]

OK, night 2 with the dental appliance

I woke up with my cheek in a pool of drool and my mouth a little dry. However I did still feel rested, though not quite as dramatically refreshed as I was the first night. (Incidentally, this also was my experience with CPAP-- the first night was one of the only nights I was ever able to fall asleep with it. It was all downhill after that).

I'll continue to report back...

[ozij]

Good luck, Schleima, I hope it works out for you!
Thanks for reorpting.
O.

[andy88488]

I can tell you that l tried a Dental Device, professionally manufactured and fitted, and it did not solve my problems with strong and apnea. They work for some people, in some cases.

I tried the TAP device, prior to getting my CPAP.

[schleima]

OK-- I'm now 5 nights in with the dental device.

Some observations...

1. Quality of sleep is very good. I wake up feeling quite refreshed each morning.

2. An interesting observation is that when I am wearing the device, I cannot even "fake-snore". My soft palate can just barely touch the back of my throat, even when I try very hard.

3. When I snap on the device at night, it feels tight and uncomfortable on my teeth, but I get used to it after about 10-15 minutes.

4. When I wake up in the morning and remove the device, my teeth usually ache a little and it takes anywhere from an hour to half a day to feel better. I've never worn dental retainers or anything before, so I am concerned about the long term effects of wearing this. I'll certainly address this issue with the oral surgeon when I meet with him this week.

[cassaro]

The long term dental effects are minimal if your over 40.
With children and young adults you would notice root "blunting" which is typical for people who have had braces when they were younger.
As with anything new...your teeth need to adjust to the device.

Good dental hygiene is important with any device that is in your mouth, make sure you brush well before putting the device in and in the morning make sure you brush the device as well to make sure it is nice and clean when you put it away.

[forwhatyoudreamof]

Hey schleima, could you post up a picture of your MRD?

I'm very curious to see how it looks like.

From what I understand, dental devices like these are all slightly different in some way.
I did a quick google search and came up with some of the more popular brands like somnomed etc.

Just trying to figure out what's available here on my side of the world in Australia, and who to ask to get it from.

My ENT surgeon did say something about the possibility of looking into this in the near future, I'm still going back for review after getting my tonsils out 2 months ago and the Pillar Implants. No improvements seen on my side yet.

[schleima]

The long term dental effects are minimal if your over 40.
With children and young adults you would notice root "blunting" which is typical for people who have had braces when they were younger.
As with anything new...your teeth need to adjust to the device.

Good dental hygiene is important with any device that is in your mouth, make sure you brush well before putting the device in and in the morning make sure you brush the device as well to make sure it is nice and clean when you put it away.

I'm not over 40... I'm 34. Never had any major (or minor) dental work... in fact I just got my first fillings about 6 months ago. That's good advice about dental hygiene and washing the retainer. It sounds obvious yet for someone like me who has never worn any kind of dental device, it wasn't immediately apparent.

[schleima]

Hey schleima, could you post up a picture of your MRD?

I'm very curious to see how it looks like.

From what I understand, dental devices like these are all slightly different in some way.
I did a quick google search and came up with some of the more popular brands like somnomed etc.

Just trying to figure out what's available here on my side of the world in Australia, and who to ask to get it from.

My ENT surgeon did say something about the possibility of looking into this in the near future, I'm still going back for review after getting my tonsils out 2 months ago and the Pillar Implants. No improvements seen on my side yet.

Sure, I'll post a pic just as soon as I can figure out how to do that Anyone care to give me a super basic primer?