Oral Appliance for UARS

[modernsportscar]

Hello to everyone!

I've been suffering from awful EDS for around 5 years now, and was diagnosed with UARS about a year ago. (More on that in another post.) After doing a lot of reading, I decided on a MAD, though I had to pay $3300 out of pocket as, I'm sure everyone here knows, insurance doesn't pay for UARS treatment.

3 months after getting in and doing small adjustments each night, I'm about 65% of the way through the given range of adjustment--meaning it extends my jaw ~2/3 of however far it's able. This puts considerable pressure on my teeth and obviously my jaw as well, though I find that if I 'warm' my jaw joints/tendons a bit (hot yoga works here), it does wonders for that part. Also, I can generally 'find' a position (usually by pulling my jaw even further forward), where it hurts my teeth a bit less.

Problems here have kept me from wearing it every night, or for the entire night. I know I *should* be wearing it all night every night, so no need to discuss that bit. I'm curious about the following. While I know every person's situation/issue is unique:

1. For anyone else that uses a MAD, at what point did you start to notice improvement in your sleep/EDS?

2. And for everyone else, if I sleep a full 8 hours with it (as I have 6-8 times) and noticed ZERO improvement, doesn't it make sense that I begin to doubt whether such a device is going to be useful for me? I know it "takes a while," but it doesn't make sense to feel NO difference, or even feel worse the next day and expect it to one day reverse course and 'start working.' It either opens up the airway to reduce resistance or it doesn't. Right?

I'm working with a sleep doctor and dentist. Just looking for feedback from the community here.

Thanks in advance for any thoughts/ideas!

[Julie]

Have you ever tried C (or A) pap?

[Woodup]

I have used a Resmed Narval MAD in conjunction with PAP but had started/stopped it multiple times over an 18-month period due to:

Initially - Caused severe TMJ.

Next - Thought it could be causing Tinnitus, which is also caused by TMJ.

Most Recently - It does not appear to either lower my PAP pressures or aid in reducing sPO2 desats. And it had begun causing tooth pain and a 2nd round of TMJ. I'm thinking it also may be contributing to further restricting my airway, due to not allowing the tongue as far forward. So MAD looks like a fail for me.

I have tried tongue advancement using a $30 vacuum bulb unit, but have not successfully adjusted to the associated tongue pain.

What is your throat opening width as measured from the 360 degree xray? What has been your largest advancement length?

Has your sleep doc recommended utilizing PAP along with the MAD?

Seems like you had a sleep study as the basis of the UARS diagnosis? If so, could you share some figures?

Are you aware of any potential positional influences such as supine?

Have you been evaluated by an ENT and have they performed a DISE? (Drug Induced Sleep Endoscopy)

[chunkyfrog]

I am so sorry to hear of such pain and difficulty.
I hope you find your solution soon.
This sort of thing makes me so grateful that cpap has become so easy and natural for me to use.

[MrGrumpy]

I am getting ready to get an oral appliance for mild OSA. Im getting a Somnodent Flex, its supposed to be one of the more comfortable types. Supposedly. I will find out in probably four to six weeks. I used to use CPAP at higher pressures and tolerated that fine. After a tonsillectomy I can barely tolerate Autopap, much less the old high pressures I used to easily tolerate. Hence, my sleep doctor suggested I try an OA.

The Somnodent Flex is made out of a softer plastic that is supposedly more comfortable. If it fails, Im probably going to just apply for Social Security Disability and retire early.

[LSAT]

Recently there has been tons of radio and TV ads on inspire in my area ...in fact, there are 3 local doctors at prominent Medical centers that use it. it's new, but perhaps it would be something for you to investigate.
https://www.inspiresleep.com/doctor-search/results/

[packitin]

I'm on my fourth machine (Dream Station Bipap Auto) since 2003, when I first knew I had apnea. I bought a Somnomed MAD 3.5 years ago and have used it every night since then. So I use both now. My AHI is consistently averaging 1 at present. I liked the oral device because it had the materials in the box it came in to allow the user to adjust it. I tightened it by very small degrees over a period of several week.

Finally I adjusted it to the point where it held my upper teeth forward as much possible to keep my throat open, and was still comfortable enough without any soreness when I awakened. I even asked my sleep doctor to test it alone with his "take home device", and after diagnosing it he told me that it "was satisfactory" if used alone. On rare occasions I take it with me to travel overnight to see my daughter who lives 2 hrs away. For longer periods, or course, I take my bipap machine, sometimes without my MAD. I like having them both, and I can use one or the other as needed if I desire.

Overall, I am pleased with the use of both each night, and I have no problem at all. I go through a "2 minute routine" every night - clean my nose mask, add distilled water to my Dream Station, throw a Pollident capsule into warm water for my MAD for a couple of minutes, rinse off and I'm ready for slumber.

I've had my new machine for 2 weeks now, and I'm happy as a lark with it, with my average time of use now a 7.36 hours.
So, all in all, I've defeated my malady. Thank everyone of this forum who have been helpful to me over the years also.

[MrGrumpy]

Your success with your Somnodent gives me hope. I admire you.

I'm on my fourth machine (Dream Station Bipap Auto) since 2003, when I first knew I had apnea. I bought a Somnomed MAD 3.5 years ago and have used it every night since then. So I use both now. My AHI is consistently averaging 1 at present. I liked the oral device because it had the materials in the box it came in to allow the user to adjust it. I tightened it by very small degrees over a period of several week.

Finally I adjusted it to the point where it held my upper teeth forward as much possible to keep my throat open, and was still comfortable enough without any soreness when I awakened. I even asked my sleep doctor to test it alone with his "take home device", and after diagnosing it he told me that it "was satisfactory" if used alone. On rare occasions I take it with me to travel overnight to see my daughter who lives 2 hrs away. For longer periods, or course, I take my bipap machine, sometimes without my MAD. I like having them both, and I can use one or the other as needed if I desire.

Overall, I am pleased with the use of both each night, and I have no problem at all. I go through a "2 minute routine" every night - clean my nose mask, add distilled water to my Dream Station, throw a Pollident capsule into warm water for my MAD for a couple of minutes, rinse off and I'm ready for slumber.

I've had my new machine for 2 weeks now, and I'm happy as a lark with it, with my average time of use now a 7.36 hours.
So, all in all, I've defeated my malady. Thank everyone of this forum who have been helpful to me over the years also.

[49er]

Modernsportscar,

I briefly tried a dental device and found it alot more intolerable than using my VPAP. So I admire your efforts in trying to make it work.

LSAT had a good suggestion in trying looking into the Inspire Procedure. Unfortunately, I didn't qualify but it might be worth your while if you can't get the dental device to work.

I wish you all the luck in the world.

49er