New Guy, UARS..., No help. Looking for answers!

Hey everyone!

Im here because, as many of you Im sure, have been having "troubles" sleeping. I could go into the grittier details of the special hell I have had trying to sort out these problems- but I am afraid that there would never be enough time to bash out all of it on this message board. Long story short, I need help...

My background;
Ive had troubles sleeping most of my life. Frequent wakenings, sleep walking, never feeling rested, fall asleep during the day in the early AM, cant drive a car because I nod off...

About three or four years ago I started having terrible sleep maintenance insomnia, and regularly wake around 2:30am (or after roughly 5 or 6 hours of sleep).

I am in my mid 30's, I weigh about 75kg, probably at about 16% bodyfat.
My diet is very clean, I eat mostly whole foods and rarely eat junk. I also (before the "troubles") am physically active and exercise 4-5 times a week.

At the moment I live in Bangkok. I went to see a sleep specialist here, and just minutes after walking through the door, she prescribed CPAP therapy for my issues (justified by claiming I had a "nasily voice"- harrumph!). I went through the sleep test, was officially diagnosed with UARS, and plunked down the $2,500usd for the machine.

Ive used this machine reguarly for the past 2 1/2 to 3 years and never skip a night. (Except when sick)

The problem is, I STILL have this damned sleep maintenance insomnia. I would love to go back and do another sleep test, but there are two issues holding me back; 1) Insurance doesnt cover it ($600usd), and 2) I am a little skeptical that it would even help given the previous history with doctors in Thailand who are more concerned with selling meds and equipment rather than giving a proper diagnosis.


Now, Ive comitted to using this machine to try to get better as I have explored a lot of other sources of the problem with no result.
(Isnt it funny how many people will come to try to suggesst some kind of tea, herb, or new age remedy when you are clearly suffering and fed up with hearing how they might've had one night of crappy sleep and their remedy helped? I mean... thats nice and all... but sometimes you feel like strangling them!)

Anyway, down to the point;

1) I have heard that UARS is different than OSA- should I be using a special setting on my machine? Is CPAP better than Auto?

2) I can't really rely on the "doctors" here, is there a way to go about titrating my machine by myself?

3) How can I view the data my machine collects to see if it is working optimally? What should I look for???
(My AHI is regularly around 0.9 - 1.5)

4) Is a higher pressure better (if I can tolerate it?)

5) Thanks for your help!

Hi, and welcome. Wish I was there (it's very winter here). Here's my 2 cents - Cpap is better than Apap only if you find Apap difficult because the changes in pressure awaken you, but Apap's otherwise better because you can use it in Cpap mode, but the reverse is not possible and you can't titrate yourself on a Cpap machine if you should want to - by setting a low pressure just under your prescribed #, e.g. 8, and a high one a few cms up from that - e.g. 12, then using software get a feel over a week or so as to where your pressure sits 90-95% of the time regardless of the odd event that jumps higher... then reset your machine if necessary to accommodate that level. If it turns out to be e.g. 11, set your low pressure at 10, and high end at e.g. 15, which should pretty well address 90-95% of your events. Setting things much lower to start, with or without a high end 'set' makes it hard for the machine to catch apneas that go much higher on occasion, so the defaults of machines (4 and 20) are not efficient enough to leave 'as is', let alone to breathe at.

Your AHI looks great, so you must be doing something right, but why not use e.g. Sleepyhead software (works on PCs+Mac) that you can DL free by going to any of Pugsy's notes and looking at her signature lines underneath. You'll also need a card reader. You can get those sig lines yourself (and help us help you) by clicking on User Ctl Panel under the main logo and then to Profile where you can add your equipment with complete name + model #'s of your machine and mask(s) as well as your settings · please use text, not icons.

Higher pressure (which you don't seem to need) is not necessarily better and can cause problems with central (or 'clear airway') apneas - not something you want, though of course if you need to bump yours by a small amount after proper titration, I wouldn't worry unless the low end was over e.g. 15.

What you want to do is PM Roby Sue for good advice on insomnia - she's 'been there' and has lots of knowledge. And hopefully others with UARS (if you in fact have it for sure) will show up with more help.

As Julie said, you need to add your equipment so that we best know how to advise you.

It would also be helpful to know a bit more about how they performed your sleep test in order to come up with the diagnosis of UARS. UARS differs from OSA in that the AHI can be below 10, but there will be a large number of flow limitations that often result in Respiratory Event Related Arousals (RERAs). Most of these arousals may only last for a second or two and will not be remembered. However, they disturb your sleep and prevent you from getting as much deep sleep that you need to restore your body, hence resulting in your daytime sleep issues.

The problem with the diagnosis of UARS during sleep tests has to do with the way that the various labs attempt to measure flow limitations and RERAs. The gold standard is a esophageal pressure measurement (PeS) that uses a catheter inserted through the nose and into the throat to measure pressure in your throat as you sleep. Unfortunately, very few labs are equipped or trained to perform this test. Other labs have new pressure sensitive cannulas placed below your nose that can measure the pressure as you inhale and exhale. The sensitivity of some of this equipment has been correlated with the Pes system and is therefore accepted. Finally, other labs will attempt to run the test using a thermister placed below the nose to measure temperature as you breathe in and out. Research has shown this system is not sensitive enough to diagnose UARS.

You will also see some discussion on this board where Flow Limitations and RERAs are equated and the names are used interchangeably. This is not completely correct, but when dealing with the limited data from a xPAP machine, it is understandable. Flow Limitations can be detected while on xPAP because the machine is monitoring both pressure and air flow volume. However, remember that the definition of a RERAs requires an arousal, which can only be determined by the EEG that is conducted during a sleep test. Flow limitations may, or may not, result in a RERA, but with UARS a RERA is triggered by a Flow Limitation.

As for your treatment, the question may be whether you are being treated with sufficient pressure to maintain the airway and prevent the RERAs that are disturbing your sleep. An APAP machine is designed to adjust the pressure to control apneas and hypopneas. Some machines can be adjusted to be more sensitive to Flow Limitations that may be associated with RERAs, but without the EEG the machine cannot know whether you are being awakened. I know that my prescription (based on Pes testing) is for a higher pressure than my APAP machine wanted to run at before I adjusted it.

Finally, if you haven't already seen them, I suggest taking a look at the information on UARS that is available on the Internet by Drs. Barry Krakow and Steven Park. Remember that both are trying to sell their points of view (and get patients), but they also have a lot of good info as wall.

Hey thanks for the replies!

I updated my profile to show my machine- PR REMstar Auto with A-flex (System ONE should be in there somewhere, but Im not sure where it goes )
I will also upload a scan of my results- because it looks kind of strange;
On the short data report there is a column for Apreas, Central 1, and AHI index of 2.9 - nothing for RERA's. Despite this, the doctors report states that there were up to 42 RERA's per hour... the only thing I saw to back this up was a score sheet, which someone (sleep tech watching me?) had ticked off like you would a score card at a baseball game.

I will also read the info you guys suggested and try to find that software to read the results. Can't hurt!

I just got through with importing all my data onto the sleepyhead software...

WOW! A mighty THANK YOU! for putting together that program! I don't know what any of the data means right now, but it is a good place to start!

Should I bother putting up a pdf of my sleep study results? If so, what info would be best? There are a lot of pages, including the readings from the machines through the whole night.

Thanks again for the help! It is MUCH appreciated!

PaulKemp wrote:1) I have heard that UARS is different than OSA- should I be using a special setting on my machine? Is CPAP better than Auto?

Whether UARS is a totally different disorder than OSA or merely a different place on a continuum that goes from snoring to severe sleep apnea is still under discussion by the docs that treat us. There are some differences, but some of us with OSA diagnoses have a lot of UARS type sensitivity and some with UARS have symptoms as bad as someone with severe OSA.

Is fixed CPAP is better or worse than Auto? The answer really depends on the user. Statistically speaking, there's no real difference according to published studies---at least in the sense of "APAP" making a statistical difference in either over all compliance or in terms of relief from daytime symptoms. But anecdotally a lot of people do develop a strong preference for either APAP or CPAP. You might do better on APAP, but then you might do better on CPAP if the pressure changes bother you. (And upper airway sensitivity does seem to be an issue in UARS and that makes some people not like the varying pressure delivered by an APAP as well as using the machine in fixed pressure CPAP mode. If you've never tried using your APAP in Auto mode, it's worth trying.

2) I can't really rely on the "doctors" here, is there a way to go about titrating my machine by myself?

Yes. It starts by putting your machine in Auto mode. Most people around here would suggest that you set the minimum pressure only slightly lower than your current fixed pressure. For the time being you can leave the max pressure at 20; for the most part machines won't increase the pressure all the way up there unless they are detecting something odd in the breathing pattern.

3) How can I view the data my machine collects to see if it is working optimally? What should I look for???
(My AHI is regularly around 0.9 - 1.5)

You've already posted you have SleepyHead. Read through Pugsy's pointers thread in the stickies to get started in understanding what all the data means.

Given that your AHI is reported as 0.9--1.5, your OSA is techinically under control. Unless you see some clustering of events in SleepyHead, the fact that your AHI is so low may indicate that the current insomnia problem has roots in something other than untreated OSA. In other words, there may be something else going on that's feeding the insomnia that is not directly related to your OSA.

4) Is a higher pressure better (if I can tolerate it?)

Maybe, maybe not. If you are having a lot of flow limitations, a higher pressure might smooth out the breathing and that might help. Note that if you are using your PR System One in CPAP mode, the machine won't record flow limitations. It has to be in Auto mode before it will record flow limitations. You can always mimic CPAP mode while in Auto by setting the min and max pressures equal to each other. That will fool the machine into recording the flow limitation data.

If you don't need the extra pressure to smooth out any residual flow limitations, then the potential problems with using a higher than needed pressure may be comfort issues: Most masks have more leak problems with higher pressures and leaks can disrupt our sleep. But there is also the fact that a small percentage of CPAPers develop problems with pressure induced central apneas if the pressure is too high. So if you do experiment with increasing the pressure, you'll want to keep an eye on the number of CAs scored by the machine.

What's your pressure setting for your APAP?

If the minimum pressure is too low, the machine may not adjust the pressure high enough to fix all apnea/UARS problems on its own.

I switched the machine back to auto, and have the min pressure set at 10cm, max at 20cm.
I have been looking at my data, and made a screenshot of last nights results - woke up at about 3am, couldnt really get back to sleep.
http://s162.photobucket.com/user/KempPa ... 6.jpg.html

I see the pressure didnt really go up over 11.5, yet the AHI and centrals increased later in the night. Not too sure what to think about that...

The increase in events seems to correspond to the time after 3 AM where you woke up and couldn't really go back to sleep all that well. Mostly CAs (centrals) and maybe those centrals are sleep onset centrals which are normal..maybe a few are awake/semi awake breathing irregularities getting flagged. It's fairly common for people to see more centrals when they report they had trouble getting to sleep or staying asleep.

The AHI graph makes it look worse than it really was. Actually I would suggest turning that off so the top events graph will come into view. The events graph is more important.

The little spikes you see on the pressure graph are the normal test pressure probes which are a normal function of apap mode.
The machine wasn't responding to anything in particular when it was doing the pressure probes.

Thanks!

I was wondering if the CA events were a signal that my pressure might be too high? I usually have the same sleep patterns, waking at about 4am, or around 2:30am when it gets really bad...

By reviewing the past data Ive noticed (thanks to sleepyhead!) that the AHI increases quite a bit just before this time and most of the CA events are clustered around these times, some before and many during the waking moments (as you suggested).

OK....

Ive done some tinkering and prepared the graphs to post to the board.

Before Jan 31st I was using an APAP pressure setting of 10cm - 20cm. (What is weird is that the graphs from sleepyhead show the pressure line at 5cm...strange)
It looks like I had mostly CA events, and my sleep was crap.

On the 31st I changed my machine settings and the mask. I started using the Optilife mask and had an APAP pressure of 9.5cm - 20cm.
The CA events for the most part completely disappeared, although the RERA's, OA, H and FL looks like they have increased. Oh, and my sleep was crap.

I am still waking in the early morning hours, between 4am and 5am. Ive noticed (over the past few years) that an increase in stress, either physical or psychological have really ruined my sleep to the point where I will regularly wake at 2:30am to 3am. Im guessing that it is a response to never really getting rested sleep and having a haywire nervous system to begin with and it really whacks my cortisol levels. Anyway, Ive been keeping rested as much as possible for the past few months, I dont exercise at all anymore and try to keep away from stress (heh...).

Graphs

Jan 30 - APAP - 10cm TrueBlue (graph shows 5) http://i162.photobucket.com/albums/t274 ... d8b1f1.jpg

Jan 31 - APAP - 9.5cm Optilife http://i162.photobucket.com/albums/t274 ... d45743.jpg

Feb 2 - APAP - 9.5cm Optilife http://i162.photobucket.com/albums/t274 ... ac7f74.jpg

Feb 5 - APAP - 9.5cm Optilife http://i162.photobucket.com/albums/t274 ... 7246d7.jpg

Feb 7 - APAP - 9.5cm Optilife http://i162.photobucket.com/albums/t274 ... 5594b5.jpg

Ive been reading a lot over the past few weeks and thinking of trying to get my hands on a BiPAP. Seems lots of people say that the IPAP/EPAP differential should help?