UARS or idiopathic hypersomnia

Sleeping -

What are you doing now to get a diagnosis/treat your UARS?

Cubbieblue wrote:Sleeping -

What are you doing now to get a diagnosis/treat your UARS?

I HAVE a diagnosis of OSA. But I had surgery since then and I need another sleep study to see where I'm at. I can't decide where to have it done, as I don't trust any clinic besides Stanford to find subtle SDB (assuming I'm even in the subtle range). But it's a big deal for me to get to Stanford. In a slipshod effort to try to figure out whether I'm flagrantly OSA, I've done some trials of CPAP at 4cm of pressure, presuming that it's almost like no therapy. I haven't managed to get through enough full nights with it, though, and as my OSA is very REM-dependent, I would ideally like a week on it where I sleep through the whole night including the early morning REM-plentiful hours with it. If I can do that and my AHI is <5, I will be reluctant to have a sleep study anywhere besides Stanford. If I do it and my AHI is above 5, I will assume that if an Auto-PAP can detect it, any sleep clinic can, even one like my local one that does not score RERAs (but they do look at FLs, although they don't quantify them).

The truth is that I'm procrastinating. I don't want to use CPAP, so I'm dragging this out. Also I've had pain lately, and I don't really want to have a sleep study with a confound of pain. So I'm delaying.

My surgeon discovered that I thin cartilage in my nose, so I can't use nasal steroid sprays, and my nose has literally been running for about 3 or 4 months. I can't get control of my allergies, so I'm working on that, trying various combinations of non-steroidal sprays & pills (e.g., nasalcrom, astepro, Patanase, Allegra-D, and of course, Neti).

I don't get it. Even if someone picks up your UARS, what are you going to do about it?

Why don't you start playing around with pressure settings until you find one you like - or try a dental appliance?

I guess I just don't understand your endgame.

Below is a succinct description of UARS. The article discusses how the authors differentiate UARS from idiopathic hypersomnia and OSAHS. Treatment options for UARS are mentioned as well: http://www.clevelandclinicmeded.com/med ... ng/#cesec9

Cubbieblue wrote:I don't get it. Even if someone picks up your UARS, what are you going to do about it?

UARS is treated the same way OSA is.

Why don't you start playing around with pressure settings until you find one you like

I thought I explained that already. I don't tolerate CPAP well and my allergies are running amuck. Right now I can't breathe through my nose well at night and I can't wear a FFM mask because it pulverizes my nose. So I'm trying different medications to get a hold of my allergies. I don't have oxygen desaturations, so there is no immediate need to torture myself.

I was once like you and longed for a diagnosis where I could "just" wear a CPAP and life would be grand. For some people CPAP is like that, but for many like me, it wrecks my sleep almost as much as it helps and offsets many of its benefits. Nevertheless I am working toward being able to try it again, but I have to deal with the allergies first. That is proving to be a challenge because I haven't been able to use nasal steroids.

or try a dental appliance?

I am not interested in messing with my bite at this point.

I guess I just don't understand your endgame.

My endgame is the same as yours: to feel alert and be able to use my brain. The difference between us is that I am at least 1-2 decades ahead of you in this process. I knew about UARS the year it was first published, I have had numerous sleep studies trying to capture it, and I am not CPAP-naive.

-SWS wrote:Below is a succinct description of UARS. The article discusses how the authors differentiate UARS from idiopathic hypersomnia and OSAHS. Treatment options for UARS are mentioned as well: http://www.clevelandclinicmeded.com/med ... ng/#cesec9

Thank you very much for that link, -SWS. I just sent the link in e-mail (and a copy of some of the information with some red underlining from me ) to a friend in another state who does not frequent this forum. Her doc (a sleep doc, mind you) is trying to screen her for SDB with an overnight recording pulse-ox!

Jeff, is your friend on a CPAP trial yet? That's probably a better way to screen for UARS than oximetry. Of course if your friend extends into the OSAHS spectrum, then pulse oximetry might reveal a true SDB "positive".

I'm thinking oximetry as a screening method likely yields poor sensitivity but very good specificity...

-SWS wrote:Jeff, is your friend on a CPAP trial yet? That's probably a better way to screen for UARS than oximetry. Of course if your friend extends into the OSAHS spectrum, then pulse oximetry might reveal a true SDB "positive".

I'm thinking oximetry as a screening method likely yields poor sensitivity but very good specificity...

No, she isn't. I wish she was. And I have a feeling she would lean toward an oral appliance first.

She is going through changes and using medications that are disturbing her sleep maintenance. But her slight build and small airway also make me suspect UARS. And her reaction to her insomnia is more fatigue than sleepiness.

I thought my work was done when she and her husband saw a sleep doc with a good reputation, at my suggestion. But then when I heard from them about the pulse-ox being used to "rule out" sleep-breathing issues, my heart sank. I'm hoping it is merely a first step in collecting information while medications are adjusted and sleep-hygiene issues are dealt with.

So far I am playing it cool and supporting from afar whatever the doc does. But I don't know how hard to push for her getting a PSG, when I personally believe that response to treatment can often be the better indicator than even PSG would be, for UARS people.

It is hard sometimes to figure out how to be helpful without being overy helpful, if you know what I mean.

Sleeping - Gotcha. Hope your allergy issues clear up.

I saw my sleep doctor today. He reacted pretty much as I expected. He said UARS is part of the spectrum of sleep breathing disorders, and that since I'm being treated for sleep apnea, that would take care of any UARS I may have. However, since the adjustments to the CPAP seem to be helping, he thinks it would be worth exploring.

Apparently there is something called RERA that measures arousals due to labored breathing that don't lead to apneas. His lab measures those. None of the other sleep studies I've had (none at his lab) have measured that. He also said he would refer me to Stanford for one of those PEZ tests if I wanted.

One of the things I've done is increase the delta between IPAP and EPAP. I have it at 6 now. Never had it more than 4 before. He suggested I increase it even more, maybe up to 10, to see what happens. He said that increases "tidal volume", whatever that is.

So the bottom line is my doctor is skeptical UARS is the problem, but open to the idea of investigating since the tweaking I've done on my pressures seems to be helping.

Wanted to come back and update this thread.

I had a second sleep study which was horrible - I slept maybe 2 hours. Couldn't even get any usable data out of it. However, since the last time I updated this thread I have been using a boil and bite sports mouthguard, which has relieved my fatigue considerably. I told my sleep doctor this and he agreed that I likely suffered from UARS.

He gave me a Respironics REMStar machine to use for a month to see how it makes me feel. So far, so good. First night a little tough to fall asleep but last night slept great with it on. It's set from 4-20, but thanks to this forum I found out how to hack it and bump it up if necessary. I actually did bump it up to 4.5 as I thought 4 left me a little air hungry.

In the past two nights the status shows my AHI to be ~ 1.5. Two nights isn't a lot of data, but what is a desirable AHI? As low as possible I would assume. It also shows that the 90% pressure (what it titrates to 90% of the time, is 5.1. So, that tells me that I am indeed having some airway collapse at night.

Only issue is that I have no medical "proof" that I need the CPAP, so who knows what BCBS will want to cover. I'll have to call over there and knock some heads.

The good news is that I found 85% success with just a regular sports mouthguard, set up so it would pull my lower jaw forward. I encourage other potential UARS folks to give this a shot and see if it brings them any relief.

I also want to agree with the hangover reducing effects of a CPAP machine I've seen around here. Hit it pretty hard for the first time in awhile the past two nights and usually my hangover would get worse and worse throughout the day. The past two days I've been having "normal" hangovers that go away within a few hours, or going back to bed for twenty minutes.

Which boil and bite did you buy?

Did the second sleep study show ANYTHING?

Are you wearing the boil and bite with the CPAP? If not, then the fact that you are spending 90% of the time at or below a pressure of 5.1 is not particularly compelling evidence for needing CPAP, considering that the lowest the pressure CAN go is 4.5 (although some people do benefit from low pressures). It MAY be that the pressure is lower than needed because of the wide-open range you have the APAP set to (the wider the range, the lower the pressure tends to be, which is part of why a narrow range is recommended). However, given your situation, I wouldn't exactly recommend you bump up the minimum pressure.

It also shows that the 90% pressure (what it titrates to 90% of the time, is 5.1. So, that tells me that I am indeed having some airway collapse at night.

I also thought that any pressure needs beyond 4cm would suggest that I had SDB, but as far as I can tell, there are no norms that exist that would allow us to make such an inference (i.e., make a diagnosis of SDB based on any rise in pressure, and 1cm rise is not much of a rise).

Still, if you think it makes you feel better beyond the boil and bite thing, and if your doctor is willing to prescribe it, you can try to get one.

It's literally the mouthguard I use for rugby...$1 from any sports store. I just molded it with my jaw a little bit forward, where I had a hard time "making" my airway collapse. I can kind of stimulate the collapse by forming leaning my head back and breathing in.

Not wearing the mouthguard with the cpap, just the cpap.

I literally slept less than 2 hours in the second sleep study. It was useless. There were noises in the room, ambulances going outside, it was just a pain in the ass, and it did show more spontaneous arousals (like 70 or something)...other than that, nada.

Yeah, I figure I'll try the CPAP for a month and see if I feel any better than with the mouthguard. If not, no need for it, I'll just use a mouthguard. If I feel better, I'll harass my insurance until they pay for it.