UARS Advice

[dudemandude]

Hey guys, I'm a tall lanky 22 year old male with suspected UARS. About a year ago, I started getting extremely sleepy throughout the day no matter how much I slept. It'd get so bad that as an intern at the time, I'd sneak off to the bathroom to take naps 20 minute naps which themselves didn't seem to help with the sleepiness. I'd normally get groggy from any kind of sleep, but with this I could fall asleep for 3 hours and wake up feeling like I hadn't slept at all.

Naturally, I went to a sleep doctor and got a sleep study which revealed that while my AHI was around 2.5, I had an average of 37.4 arousals per hour, 21.7 of them respiratory and, according to the report, "elevated upper airway resistance". While my doctor never explicitly mentioned UARS, he did prescribe me a CPAP to use with an auto setting from 4-20.

I went off to college so I wasn't able to see my doctor directly and began to use my CPAP everyday. At first it seemed to be giving me more refreshing sleep(auto seemed to settle at a pressure of around 7) and while I still didn't feel great, I felt much better. Now at least when I did feel bad, I could compensate by drinking coffee or doing something else stimulating. However, after about 2 weeks, my therapy seemed to lose it's effectiveness. I was no longer sleepy throughout the day(in fact now I couldn't sleep in the middle of the day!) but I still felt like my sleep was extremely unrefreshing and was very tired throughout the day no matter what I did, coffee, physical exercise, etc.

I downloaded Sleepyhead and used a lot of the advice found on this forum to attempt to optimize my therapy. At the auto pressures my machine set itself to I'd get on average an AHI of around 3.5. I experimented with pressures from 7-11.5(at this point severe aerophagia set in), auto, straight CPAP etc and was able to get my AHI down to as low as 1 on most nights. However, I found no correlation between my AHI and how I felt.

I've been using the CPAP for about 6 months now and have essentially remained in this state which has made life very difficult. I've returned home and my doctor has scheduled another sleep study(with an explicit titration) to see what's going on. Unfortunately, my doctor doesn't seem to really believe in UARS(unlike the doctors I briefly saw at the UPMC sleep center but couldn't see further do to going home) and is thus unlikeley to be attempting to titrate for it. He seems to be pushing me to get surgery for my tonsils without offering up any real explanation as to why he thinks that would work for my case but CPAP wouldn't.

My question is to those with some experience with UARS who tried CPAP and found it ineffective. Were you able to make CPAP work for you? If so, what did you to facilitate that? If not, did a dental device or surgery help you out? How did you know those were the best options for you?

Thanks so much for your help!

[Sylvia54]

Hi there, can't help much but I have done some reading on UARS. Did you ever have orthodontic work, i.e. crowded teeth pulled and braces? Or did you have surgery for a protruding jaw?
Any of this can eventually cause a sleep breathing disorder but not necessarily sleep apnea. If you haven't already done so, I suggest you look up Dr. Steven Park's website, he wrote the book "Sleep Interrupted". The book is available on Amazon.

[dudemandude]

No problem, at all thanks a bunch for the resources. I have had braces in the past to correct a mild overbite and I've spent a lot of time on Dr Parks site. Unfortunately, I haven't been able to yet find any specifics on actually approaching treatment once CPAP has appeared to not be working. I can ask my doctor about an oral device, and I've been to an ENT who has mentioned that I have a crowded airway and may benefit from surgery, but it's not clear to me which option I should be gunning for. Presumably there has to be some reason why CPAP at the pressures I've been at wouldn't work but some other approach might.

[ChicagoGranny]

college ... coffee

Those are red flags.

How well do you do vis-à-vis this checklist?

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping only, and make sure the bedroom and bed are comfortable.
- Learn to appropriately handle emotional stress in your life
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems

CG

[Sylvia54]

Sorry you're having to deal with such issues at a young age. I'm decades older than you but I also had braces (as a teenager) which may have led to the obstructed breathing and sleep disturbance I have today. My teeth were very crowded and several were pulled at the time. Finally after years of trying to find the root cause of my insomnia, I was diagnosed with sleep apnea (mostly while on my back) earlier this year. I came across UARS while searching the internet a few months ago and saw where some who've been formally diagnosed had complaints chronic insomnia. I've been using cpap/apap since last April and it seems to intermittently help me feel better, along with a light dose of clonazepam. I also saw an ENT doctor who noted that there's crowding at the back of my mouth. My sleep doctor avoided my question about UARS, some don't believe it exists. I suggest you look up a sleep dentist for another opinion. I plan to do that myself later this year.

[ChicagoGranny]

I suggest you look up a sleep dentist for another opinion. I plan to do that myself later this year.

What do you expect a sleep dentist could do? All a sleep dentist does to treat is to make a custom oral appliance. CPAP is far superior for UARS (and sleep apnea) as compared to custom oral appliances (mandibular advancement devices).

[dudemandude]

I suggest you look up a sleep dentist for another opinion. I plan to do that myself later this year.

What do you expect a sleep dentist could do? All a sleep dentist does to treat is to make a custom oral appliance. CPAP is far superior for UARS (and sleep apnea) as compared to custom oral appliances (mandibular advancement devices).

I think that's far from a verifiable statement for UARS, even for mild to moderate OSA patients oral appliances have been shown to be at least as effective as CPAP use. With regards to specifically UARS, the research seems to indicate that both are viable options with similar success rates although I don't recall ever seeing a head to head comparison study(there aren't many UARS specific studies to begin with). It does also seem that experts like Steven Park do suggest oral appliance use after CPAP has appeared to be ineffective as a viable option to try out before considering surgery. As CPAP and oral appliances often have different mechanisms for achieving good results, I don't see how this is such a surprise and how one can be considered to be a more superior treatment as a whole then the other. For example, if ones main problem is the tongue obstructing the airway during REM, then an oral device that specifically moves the tongue forward may prove to be more effective then a CPAP device which more indirectly addresses the problem. And I wouldn't be surprised if there were other cases where an oral device might prove to be more effective. I would however love to find someone to talk to that has tried both.

[MrKDilkington]

dudemandude - I recommend having a consultation with an otolaryngologist that specializes in OSA; they can perform a drug-induced sleep endoscopy on you to pinpoint where any obstructions are occurring. It'd also be worth seeing an orthognathic (jaw) surgeon so they can perform imaging tests and provide you with pictures/figures of your entire airway, to eliminate guesswork. I saw an orthognathic surgeon and learned that my nasal airway in particular was incredibly small, for example. I also learned from the jaw surgeon that my bite was in a delicate equilibrium and an oral appliance would've ravaged it. If you want to pursue surgery, either type of surgeon can propose a plan based on their respective tests.

[49er]

Dudemandude,

A 2011 study of 800 plus participants showed that an adjustable dental appliance mostly had a 75% chance of reducing the AHI below 5 for mild apnea and 60% for moderate apnea. I haven't seen any recent studies so if you have any links, can you please share them?

Statistics aside, one thing you might want to think about is what it may be like for you to sleep with something in your mouth? If you think you may be ok with that, then yes, perhaps a dental appliance is worth considering.

However, because it definitely isn't problem free, I might consider giving your therapy more time since you so far, have been at it 6 months. Have you tried Chicago Granny's sleep hygiene suggestion list? Even though you might think that it is simply an issue of not tolerating the machine, that other factors come into play.

Have you also had a checkup with your PCP to make sure nothing else is going on such as low vitamin D, etc.?

I also might also post screenshots of sleepyhead as maybe members can spot things you may be missing in your data.

Regarding surgery, from what I understand, if an ENT scopes your entire airway, he/she can tell you where the obstructions are and what surgery may work the best. But personally, until you have made sure all other bases have been covered, I would hold off on pursuing this route.

49er

[ChicagoGranny]

It does also seem that experts like Steven Park do suggest oral appliance use after CPAP has appeared to be ineffective as a viable option to try out before considering surgery.

Oral appliances are for people who choose not to tolerate CPAP. You have been using CPAP for six months with no complaints about being able to tolerate it. Given that you tolerate CPAP, would you really want to try sleeping with a mouth full of plastic and metal pulling your jaw into an uncomfortable position? (I have a custom made $1600 mandibular advancement device - torture.)

Seeing a sleep dentist at this point would be a bad choice - grasping at straws.

He seems to be pushing me to get surgery for my tonsils without offering up any real explanation as to why he thinks that would work for my case but CPAP wouldn't.

Given that, your next step should be to follow this excellent advice:

dudemandude - I recommend having a consultation with an otolaryngologist that specializes in OSA; they can perform a drug-induced sleep endoscopy on you to pinpoint where any obstructions are occurring. It'd also be worth seeing an orthognathic (jaw) surgeon so they can perform imaging tests and provide you with pictures/figures of your entire airway, to eliminate guesswork. I saw an orthognathic surgeon and learned that my nasal airway in particular was incredibly small, for example. I also learned from the jaw surgeon that my bite was in a delicate equilibrium and an oral appliance would've ravaged it. If you want to pursue surgery, either type of surgeon can propose a plan based on their respective tests.

He seems to be pushing me to get surgery for my tonsils without offering up any real explanation as to why he thinks that would work for my case but CPAP wouldn't.

Yes, he should have given you a clear description of the condition and size of your tonsils. Did he mention your Mallampati score?

[Sylvia54]

I suggest you look up a sleep dentist for another opinion. I plan to do that myself later this year.

What do you expect a sleep dentist could do? All a sleep dentist does to treat is to make a custom oral appliance. CPAP is far superior for UARS (and sleep apnea) as compared to custom oral appliances (mandibular advancement devices).

What I expect is to get is more information on an alternative treatment. From reading articles and comments to the articles on oral appliances, I've seen that they successfully work for some people and not others. And I've also learned that these dental appliances have been around for at least 15 yrs or so (?). So by now, a state of the art appliance should be more effective than what was offered, say 10 yrs ago. I know cpap is the Gold Standard treatment for sleep breathing disorders and that's why I use my cpap every night. But it's nice to know that there's other options that may work better for some individual cases such as mine.

[Sylvia54]

I suggest you look up a sleep dentist for another opinion. I plan to do that myself later this year.

What do you expect a sleep dentist could do? All a sleep dentist does to treat is to make a custom oral appliance. CPAP is far superior for UARS (and sleep apnea) as compared to custom oral appliances (mandibular advancement devices).

I think that's far from a verifiable statement for UARS, even for mild to moderate OSA patients oral appliances have been shown to be at least as effective as CPAP use. With regards to specifically UARS, the research seems to indicate that both are viable options with similar success rates although I don't recall ever seeing a head to head comparison study(there aren't many UARS specific studies to begin with). It does also seem that experts like Steven Park do suggest oral appliance use after CPAP has appeared to be ineffective as a viable option to try out before considering surgery. As CPAP and oral appliances often have different mechanisms for achieving good results, I don't see how this is such a surprise and how one can be considered to be a more superior treatment as a whole then the other. For example, if ones main problem is the tongue obstructing the airway during REM, then an oral device that specifically moves the tongue forward may prove to be more effective then a CPAP device which more indirectly addresses the problem. And I wouldn't be surprised if there were other cases where an oral device might prove to be more effective. I would however love to find someone to talk to that has tried both.

Sorry, I don't personally know anyone who has tried both. However, at my last visit with the RT at my DME, he told me that his previous customer (who'd just left with a new cpap machine) had already been using an oral appliance and he was now going to use the two treatments together. Also, just recently on an internet search, I came across a clinic that treats sleep apnea patients with the combination as well. Sorry I didn't bookmark the site but you could probably find a clinic like that on your own search.

[ChicagoGranny]

But it's nice to know that there's other options that may work better for some individual cases such as mine.

I'd like to see any information you find of a case where a MAD worked better than an optimized and tolerated CPAP process. Thanks.

[tan]

I had a very similar story with UARS: low AHI, high RDI, honeymoon with APAP, then a "divorce" from it, looking for solutions, including sleep dentist, one count of attempted surgery (changed my mind), but finally found a solution with VPAP and remain "married" to it happily ever every since.

UARS patients natural have a light sleep. Practicing a good sleep hygiene is a good start. Then, you use Sleepy Head to investigate what else may be causing sleep distrubances

[dudemandude]

I had a very similar story with UARS: low AHI, high RDI, honeymoon with APAP, then a "divorce" from it, looking for solutions, including sleep dentist, one count of attempted surgery (changed my mind), but finally found a solution with VPAP and remain "married" to it happily ever every since.

UARS patients natural have a light sleep. Practicing a good sleep hygiene is a good start. Then, you use Sleepy Head to investigate what else may be causing sleep distrubances

Hey Tan could you elaborate on what things you looked at in Sleepyhead to get an understanding of what you could improve in your treatment? I've spent a lot of time lurking these forums learning to understand what I'm looking at and have attempted to find clues as to what I could do by looking at my Sleepyhead results at various pressures to no avail. While my sleep hygiene right now is not very good, I did fix it at various points in my ordeal without any real significant improvements unfortunately. Also how did you eventually settle down on the VPAP solution? Did you ask your doctor to titrate you on it after CPAP failed? Thanks so much for your advice, UARS has proven to be a lot harder to deal with then I had hoped.