Diagnosed UARS--Help with next steps?

[blitzmr2]

PLEASE help! : )

BACKSTORY

I've been "tired" for last 5-6 years, but it's gotten increasingly bad over last year or so, and even more so in last 2 months. What I used to call fatigue and now call "EDS" is terrible. I'm a writer and father of 4 children, and while everyone loves to joke that "that's why I'm tired," this is a different kind of tired. I'm sleepy, eyes burn, can't concentrate, walk around in a brain fog, want to nap constantly (but often can't), etc. I feel AWFUL--feel the same at 2 am as I do at 6 am as I do at 4 pm. Sleep is non-restorative. (There's definitely some depression as well, which I've been treated for along with anxiety, but I'm confident this is a chicken-egg situation, where I'm "depressed" because I'm exhausted all the time.)

I'm also a heavy teeth grinder. :/

DATA

Sleep Study 1 January 2016
Total sleep time: 313 mins
AHI index:.2 (ha!)
RERAs: 46 for a RERA index of 8.8.

Sleep Efficiency 71.3%

RDI 22.1/hr during REM sleep, 7/hr during non-REM sleep

Sleep Stages
N1: 13%
N2: 68%
N3: 6.5%
REM: 13.9%

Light to moderate snoring noted throughout night.

Sleep Study 2 August 2016
Total sleep time: 343 mins
Apneas: 2 (13 seconds each)
Hypopneas: 12 total--4.7 during REM/1.3 non-REM
RERAs: 6 for a RERA index of 1.6
AHI index: 4.7 REM/1.8 non-REM

Sleep Efficiency 80.4%

RDI 4.5/hr on back, ~1/hr (much better this study, oddly)

Respiratory awakenings: 5 total, 1.6/hr
Spontaneous Arousals: 47, ~10/hr.
Total Arousals: 60/10.4/hr

Sleep Stages (again, much better this study)
N1: 3.8%
N2: 57%
N3: 17%
REM: 22%

Light to moderate snoring noted throughout night.

INTERPRETING

I'm new to all of this learning as quickly as I can. After the first study, the sleep doctor explained plainly that I had no significant AH, and wrote "UARS" on diagnosis (without discussing at all what that meant) and suggested a dental appliance, which I have ordered at a cost of $3200 out of my pocket (had to apply for a credit card to get, as insurance obviously won't cover it). That should be here in about 2 weeks. A family member also gave me a CPAP machine (Philips Respironics REMstar Pro C-Flex+ with humidifier). I tried it twice for 4 hours each and felt no better, realized I had no idea what I was doing and haven't touched it since.

After the second study he basically said the same thing--I don't meet requirements for AH, but of course, who cares?! What DO I have then?!

After doing a LOT of reading as my desperation increases, I've found a lot of reason to suspect that UARS may indeed be the issue. I have an extremely high/narrow palate, a typical "adenoid" face, and a mallampati 3 mouth/throat. I have a naturally head forward/slouched posture, crowded teeth, often bite inside of cheeks, etc. My throat is often read/irritated from mouth breathing. Visited two ENTs, one who said everything looked perfect, the other who said I have a deviated septum, very narrow throat, and blockages in multiple spots--nose, throat, etc. The latter recommended a tonsillectomy and UPP as a first step to see how I respond, and repairing deviated septum and remove other block (can't recall what it was) after.

As far as my anatomy, I'm a non-smoker and in excellent shape. 41 years old, 5'11, 170 lbs. I've been a lifetime mouth-breather, though I obviously work hard to breathe through my nose. I've also been trying orofacial/myology exercises as well the last week or so--have a large tongue with "denting" on side from it being too big for my narrow mouth. More anything I'm trying to get a strong oral posture with tongue pressed flat-ish to the roof of my mouth.

I've tried hot yoga (which I still do and love), swapping an SSRI for an SRNI, ritalin, modafinil, no sugar diet for 6 weeks, and a (LOT) more to try to see what's going on (e.g., blue light reduction, extensive sleep maintenance, new mattress, different positions, meditation, CBT, no coffee, no alcohol, cooler/warmer room, different pillows--I can elaborate in detail if necessary.)

I was hoping the community here could help me figure out what to do while I wait for dental appliance. I have more data, and a ton of research I'm happy to share on UARS with others. I was a bit baffled by sleep stuyd #2s results, which showed "normal" AH, normal %s for each stage of sleep, and so on. It has 47 "spontaneous arousals," but after lurking here a bit and reading, it seems that's also well within the normal range, as are the REM AH index of 4.7. The results don't look that bad (I can post scans of the studies if that would help). If everything is so "normal" then why am I so tired? I do have some suspicions about how these data are collected--how many hyponeas did I have that didn't result in 3% or greater desaturation, for example), but want to hear what you all think first. (Also going to be tested for Lyme disease tomorrow--had extensive blood work done twice now, and everything is normal.)

Thank you SO much in advance for any ideas. Not looking for diagnoses or expert advice, just for some experienced folks to share their impressions.

*edited for clarity

[Julie]

Very first thing that comes to mind is hold off on the appliance for now until you get things sorted out - way expensive and may not at all be the right answer for you especially as you don't actually have a diagnosis yet, regardless of your own research into anatomy, etc. Secondly, has your MD done a good across the board lab check into other possible causes for your symptoms, including all bloodwork, hormones, glucose/sugar, Vit. D, cardiac workup, etc. etc?

You may have UARS, but you may have other related problems or other completely unrelated ones and I'd be a bit careful about using Google because you can make yourself crazy chasing links without more hard info. to work with, and too many conditions have enormous criteria/symptom lists that overlap.

Get a referral to a real sleep specialist - generally either a pulmonologist or neurologist with sleep training - and talk things over with them before shelling out on that appliance... they can create new problems (like TMJ) and don't necessarily help e.g. UARS anyway, let alone apnea that may be caused by different factors. And please come back to this thread rather than a new one, so we can follow the sequence.

[blitzmr2]

Thanks for the quick response.

To clarify, I had both studies done here done here and the doctor viewable here diagnosed me with UARS.

Yes, clean labs and bloodwork, including kidneys, liver, thyroid, hormones, etc.

Already bought the appliance, unfortunately.

*edited for links

[Julie]

UARS is very often 'diagnosed' by elimination as most machines do not acknowledge the problem well, if at all, so you may be on the right track, can't tell now (and we're not doctors of course), but neither of your links work for some reason - could it be their endings that look tacked on?

I'm not sure how we can help at this point... wish you'd have come here prior to paying for what may help, but what may not. Hopefully others will come in here with some suggestions... I'm not as familiar with UARS as they might be, if that does turn out to be your problem.

[tan]

UARS is very often 'diagnosed' by elimination
.

Not really. UARS is quite definitely diagnosed based on sleep study results (scoring of RERA), provided the sleep doc is aware of UARS, and he is.

[tan]

Thanks for the quick response.

To clarify, I had both studies done here done here and the doctor viewable here diagnosed me with UARS.

Yes, clean labs and bloodwork, including kidneys, liver, thyroid, hormones, etc.

Already bought the appliance, unfortunately.

the appliance may help or may not help. Hope it does. If not, you may want to re-approach CPAP. However, it's impossible to suggest anything further without knowing what your issues with CPAP were. Even slightest deviation from an ideal sleep setup can ruin your sleep. Minor leaks, flow limitations, dry mouth, etc

I have UARS, 18 RDI

[palerider]

CPAPayPal

gotta love autoincorrect.

[tan]

CPAPayPal

gotta love autoincorrect.

on the go..sigh

[blitzmr2]

To be clear, I'm not 'set' on UARS. I'd be tickled to death if my issue turns out not to be sleep-related (assuming it doesn't turn out to be life-threatening). Just a whole lot of coincidence if not. It seems to be the most likely cause, followed (in terms of probability) by some weird consequence/manifestation of depression.

Got me. Doctors have been extraordinarily unhelpful. Thus my post here.

[Julie]

I can only suggest changing docs at this point if your insce allows it and giving all those fixes you tried plenty of time for each by itself so as not to mix up variables. Also look into your meds - do you take Ritalin routinely or was that just a trial (and why did you try it - as an awake aid or for ADHD?) because it may keep you awake if you don't have the dx.

If you do find the answer, come back and let us know... good luck!

[blitzmr2]

Ritalin was temporary to help with wakefulness. On 200 MG on Modafinil now which works better, but I don't take it every day either--it only helps maybe 25%.

I've tried 4 doctors. They all say the same thing--'Could be anything,' or most recently "This may be something you never figure out.--may just have to learn to live with it." GREAT.

I'll update as relevant. I'm going to try the appliance first. Next step is to start experimenting on my own with likely a bilevel cpap, for better or for worse. After that I'll find a someone like Dr Stephen Parker in NY or Dr Barry Krakow out west to see if they can help. If that does't pan out, surgery (UPP/tonsillectomy/UPP first) would likely be next option.

[Julie]

I'm still not sure why you feel a bipap will help, especially as you still don't have a diagnosis and all it is really is a C (or A)pap for people who need higher than usual pressures. What worries me more is that someone's not only talked you into the dental device, but is apparently advocating the UPP surgery. It's very controversial at best, because while there are obviously some people who have benefitted in the past from it, it also seems to have quite a bad rep with very many others who find possibly temp relief short term (few months) but end up back where they started, still needing Cpap within a year or so, but now with compromised (and obviously nonreversible) anatomy... not a procedure most here recommend having at all even with solid dx's of OSA and/or intractable symptoms.

Dr. Park and Dr. Krakow both have excellent reps re OSA and related problems however, so I hope you can get in to see them in a reasonable time - let us know how it all goes!

And hate to say it, but I don't feel you've necessarily been 'diagnosed' with UARS... from what you said it sounded more like your MD kind of threw it out as a last resort for lack of a better answer (some people just feel compelled to have one sometimes ) rather than as something he felt strongly about, and I would more likely look at other medical issues altogether before settling on it as definitive. Not all fatigue or sleepiness is about OSA, UARS, etc.

And FWIW, I'm not particularly known for being ultraconservative (medically or politically ) as some others might be... I would certainly tell you to try this or that if I thought it would help, but I just don't think you're 'there' yet in terms of a definite diagnosis, let alone having tried and 'failed' at the usual answers.

[49er]

Ritalin was temporary to help with wakefulness. On 200 MG on Modafinil now which works better, but I don't take it every day either--it only helps maybe 25%.

I've tried 4 doctors. They all say the same thing--'Could be anything,' or most recently "This may be something you never figure out.--may just have to learn to live with it." GREAT.

I'll update as relevant. I'm going to try the appliance first. Next step is to start experimenting on my own with likely a bilevel cpap, for better or for worse. After that I'll find a someone like Dr Stephen Parker in NY or Dr Barry Krakow out west to see if they can help. If that does't pan out, surgery (UPP/tonsillectomy/UPP first) would likely be next option.

Hi,

With an RDI of 8.8. you definitely have UARS.

http://freecpapadvice.com/reras-and-uars

I think your strategy to experiment on your own with a bilevel device is a good idea since some folks with UARs have found them to be helpful. And it isn't necessarily true that they are only for people with high pressure needs.

Regarding being tired, you mentioned being treated for anxiety and depression. Assuming you are taking meds, could they possibly be contributing to your fatigue?

Best of luck.

49er

[palerider]

I'm still not sure why you feel a bipap will help, especially as you still don't have a diagnosis and all it is really is a C (or A)pap for people who need higher than usual pressures.

bilevel also gives more options for pressure, as in a higher difference between inhale and exhale pressure.

basically, just more options to try and make it fit what is needed for less common needs.

[Julie]

Interesting... not sure how that works, but I respect your tech knowledge and you certainly know more about it than I do.