UARS: Talk to me

[lazer]

So here I am in limbo again awaiting the DME reports to insurance regarding my latest (in-home) sleep study and an indication of an RDI of 5 but AHI of 2. I am clearly having some sort of sleep disorder that has formerly interrupted and negatively effected my quality of sleep prior to starting on APAP back in May 2012. I know this by the improvement in how I feel now post-APAP. Notably the decrease in Insomnia, able to wake up better/quicker at the alarm for work days, able to not sleep in on the weekend until afternoon, able to feel like I can exercise without extreme fatigue making that seem like an impossibility. Feeling better physically and able to concentrate better at work for the most part.

With that said, I still am battling with a lot of emotional/mental issues. Most certainly feeling over-stressed and anxiety to the point I want to withdraw from everyone and just keep to myself. This in part has already ruined and ended my 3yr+ relationship.

So after extensive research on my own and some discussion with some members via PM on this board, my symptoms and conditions seem to point to a UARS diagnosis rather than OSA. Of course this would also explain why I'm having such a battle with the DME and Insurance to get something turned in since they base the criteria for issuing xPAPs on the AHI number(s) which in my case don't seem to ever exceed 5. I've had two prior sleep studies to this current one. The latest was the beginning of this year where I was noted not to go beyond stage #2 sleep. The original sleep study I had (in-lab) over 6 years ago also showed that I only reached stage #2 sleep and I was simply told that there were no "events" by the sleep tech at that time.

As I understand it, UARS is very hard to get a diagnosis for and not even recognized by the insurance companies as a covered (Code) requiring xPAP even though in my case, I am clearly seeing some benefit being on the hose.

I would appreciate anyone with either first hand knowledge OR at all familiar with UARS cases to add some input and suggestions to this thread. Any and all advice is welcome whether positive or negative. As I tend to do, I am reaching out for any and all advice and opinions on this matter in order to be better armed with information to present to my doctor who remains on board completely with me in pursuing this treatment with xPAP although he nor I have even discussed the thought of UARS as of this date. After all, he is just a PCP and while he seems to have some knowledge on xPAP and willingness to pursue it, I highly doubt he knows even as much about it vs.s many members on this board.

Again, All suggestions welcome. My goal is improved sleep and mental function without the reliance on prescription drugs.

[1041]

Have you looked at your flow graphs and seen that they have the characteristic UARS shape?

[lazer]

Have you looked at your flow graphs and seen that they have the characteristic UARS shape?

Anything indicated by this: (Or do I have to zoom in on something OR use the "paperclip" option via Encore Basic)

[Pugsy]

You would need to zoom in SleepyHead to match the wave form flow found in Encore's wave form graphs.
Need to see each individual breath to look for possible flow limitations showing on each breath.
I don't know that I have seen any examples of what a UARS waveform might look like.

[1041]

http://www.apneaboard.com/forums/Thread ... drome--981

shutterbug sue's attachment.

[lazer]

These from Encore:

[lazer]

http://www.apneaboard.com/forums/Thread ... drome--981

shutterbug sue's attachment.

From this:

• Chronic insomnia with frequent awakenings and the inability to fall back asleep tends to be more common in patients with UARS than those with sleep apnea. (Pre-APAP)
• Patients with sleep apnea tend to fall asleep easily during the day (such as when driving), however, patients with UARS are more likely to complain of fatigue than sleepiness. (Currently & Pre-APAP)
• Patients with sleep apnea tend to be overweight; however, those with UARS can be any weight.
• About 50 percent of those with UARS are women, while only 8 percent of those with sleep apnea are female. N/A - I'm a Male
• Upper airway resistance syndrome is often accompanied by a spastic colon and low blood pressure with lightheadedness on standing while sleep apnea is usually associated with high blood pressure. (My BP in General has been lower)
• People with UARS usually have cold hands and feet and other symptoms of hypothyroidism and a brainwave pattern called alpha intrusion into Delta sleep, which often occurs in CFS and fibromyalgia. (Yes, Especially in the winter months.

[robysue]

lazur,

I know you say you've had multiple sleeo studies done. But some clarification on them might be useful since you suspect UARS may be the more accurate diagnosis. Note that in UARS, the problems seem to stem from the arousals (not O2 desats) associated with RERAs in the untreated sleep.

So relevant questions become:

Are your recent sleep studies home sleep studies or PSGs done in a lab?

If they are home sleep studies, what data channels were used to score the test? In particular, was there an EEG for measuring arousals? Or did it take an O2 desat to score an event? And if the events required an O2 desat, how large of a desat did it take?

If you have had a recent in-lab PSG, did they test explictly for RERAs? What criteria were used to score a RERA? And standard was used to score the hypopneas used in the AHI? Which standard was used to score the hypopneas used in the RDI?

Why are these important? Because if EEG arousals have not bee part of scoring your respiratory events, then perhaps the battle that you need to fight is getting the insurance company to pay for a sleep study that does use EEG arousals as a scoring criteria and that looks specifically for UARS. And if you get a clear UARS diagnosis, the the doc can start writing the letters of medical necessity that may convince the insurance to pay for the machine and that will be needed as documentation in any appeal you might decide to make concerning a denial of coverage.

[robysue]

Have you looked at your flow graphs and seen that they have the characteristic UARS shape?

There is a basic problem with this idea: xPAP treats UARS the same way it treats OSA: If the therapy is effective, the vast majority of RERAs (and flow linitations) are prevented from happening and the treated wave flow looks reasonably normal. And Lazur reports that he is feeling better; hence if Lazur does indeed have UARS, it is reasonable to infer that his therapy is high quality therapy and that his treated airflow is NOT full of excessive numbers of RERAs and serious flow limitations.

[1041]

It actually doesn't look like UARS to me.

If you go to this link

http://www.centerforsoundsleep.com/Uppe ... ndrome.php

and scroll down to the picture with the red and green arrows, you see that the idea of UARS is that you get some restriction progressively, and then your brain jerks you up out of sleep to draw some stronger breaths.

That is the multiple arousal every night that screws up your sleep, but I don't see that in your graphs.

[lazer]

So relevant questions become:

Are your recent sleep studies home sleep studies or PSGs done in a lab?

If they are home sleep studies, what data channels were used to score the test? In particular, was there an EEG for measuring arousals? Or did it take an O2 desat to score an event? And if the events required an O2 desat, how large of a desat did it take?

If you have had a recent in-lab PSG, did they test explictly for RERAs? What criteria were used to score a RERA? And standard was used to score the hypopneas used in the AHI? Which standard was used to score the hypopneas used in the RDI?

Hi RobySue,

I can't say for certain as to the one and only in-lab study I had 6+ years ago (estimated). I know I had a bunch of electrodes placed all over my body. Never masked up for it. Had an extreme problem ever falling asleep and I would estimate I only got about 4 hours of sleep in. The tech had simply told me "no events" when I awoke in the morning. The doctor later told me that while the sleep study didn't prove OSA, I had never went beyond Stage #2 sleep.

Forward to most recent. At the beginning of this year, I had a 3 night in-home sleep study through a company called Novasom. They sent me the equipment with instructions. I remember a finger probe (oximeter?) , Chest band, and a nasal contraption similar to my swift FX except it didn't deliver air but rather detected it I guess. That is the study done this January/February that I had spoke about in my initial posts when joining this board. I would have to back track to view the data I posted somewhere but I did obtain a full report of that study. It also indicated low AHI per the criteria that the insurance is looking for along with an indication that I never went into the later stages of sleep.

Current sleep study (Two Monday's ago) as per what I discussed. It was merely a head(band) unit that I picked up at my PCP's office. It was obviously a much lower end study in which my doc did get the insurance to kick in for despite me already having the one done earlier this year. My out of pocket cost would have been $200 which I would have declined on if it wasn't for insurance approving coverage since I'm already convinced for what ever reason I am benefiting post-APAP already with my described symptoms improving minus the emotional ones, thus I was ready to put that extra money towards purchasing masks, ect... since Pugsy so kindly helped me secure and pay for a nice zero hour Auto-IQ which I can eventually fall back on if none of this goes through and my DME wants their loaner returned.

So as far as what data was acquired where and when, I basically have no clue at this point. I suppose I could request this from my PCP, although he has been and continues to be 100% in my corner and is willing to push on for the xPAP along with advising me to keep using it.

To 1041:

Sorry, I just spotted your return post upon typing this one out and scrolling down. I will look at what you mention about my graphs not seeming to point to UARS.

Again, any input on this is very appreciated. I would very much like to get to the bottom of what is going on with me and what is going to improve my sleep and make me feel more normal. I do feel I'm half way there physically speaking post APAP, now the mental part and occasional "not so very good nights" I would like to improve upon.

[robysue]

It actually doesn't look like UARS to me.

If you go to this link

http://www.centerforsoundsleep.com/Uppe ... ndrome.php

and scroll down to the picture with the red and green arrows, you see that the idea of UARS is that you get some restriction progressively, and then your brain jerks you up out of sleep to draw some stronger breaths.

That is the multiple arousal every night that screws up your sleep, but I don't see that in your graphs.

The data is from an APAP machine running with a pressure range of 9-12cm based on what lazur posted in this thread.

In other words, you are looking at a wave form from a person being treated with a therapeutic level of pressure. And lazur's therapy is working---in the sense that he is beginning to feel better. And hence, we would expect that lazur's wave flow with treatment should NOT have any real evidence of UARS-type breathing: His APAP is preventing the RERAs from occurring.

Lazur's problem, as I understand it, is that his sleep tests, which were NOT set up to detect UARS, did not reveal enough of a problem with OSA for his insurance company to pay for his PAP or his supplies. His PCP has been willing to prescribe the equipment on the grounds that it might help based on lazur's pre-diagnosis symptoms.

[robysue]

Hi RobySue,

I can't say for certain as to the one and only in-lab study I had 6+ years ago (estimated). I know I had a bunch of electrodes placed all over my body. Never masked up for it. Had an extreme problem ever falling asleep and I would estimate I only got about 4 hours of sleep in. The tech had simply told me "no events" when I awoke in the morning. The doctor later told me that while the sleep study didn't prove OSA, I had never went beyond Stage #2 sleep.

I may be wrong, but I'm not sure they were even thinking about UARS 6+ years ago. And I wonder how hypopneas were scored at the time.

Forward to most recent. At the beginning of this year, I had a 3 night in-home sleep study through a company called Novasom. They sent me the equipment with instructions. I remember a finger probe (oximeter?) , Chest band, and a nasal contraption similar to my swift FX except it didn't deliver air but rather detected it I guess. That is the study done this January/February that I had spoke about in my initial posts when joining this board. I would have to back track to view the data I posted somewhere but I did obtain a full report of that study. It also indicated low AHI per the criteria that the insurance is looking for along with an indication that I never went into the later stages of sleep.

According to info from Novasom's web pages, their home sleep study does not include an EEG. And while I'm willing to believe their advertising at this page that points out scientific studies that give the device a respectable accuracy rate for OSA, it clearly does have some problems in the home environment. And given its description, it would clearly NOT detect a much of a problem in a patient with UARS and quite likely would also give a false negative result to a patient like myself---one whose OSA problem is due to an excessive number of "hypopneas with arousal" scored under the Alternative Standard that does not require an O2 desat for scoring an hypopnea.

I point all this out because you may be in that group of SBD patients that need the EEG data in order for the Hs (and RRAs) to be scored.

Current sleep study (Two Monday's ago) as per what I discussed. It was merely a head(band) unit that I picked up at my PCP's office. It was obviously a much lower end study in which my doc did get the insurance to kick in for despite me already having the one done earlier this year.

It would be well worth your tome to find out exactly what that headband unit was measuring and how it was measuring it. Did you use it with or without the PAP?

My out of pocket cost would have been $200 which I would have declined on if it wasn't for insurance approving coverage since I'm already convinced for what ever reason I am benefiting post-APAP already with my described symptoms improving minus the emotional ones, thus I was ready to put that extra money towards purchasing masks, ect... since Pugsy so kindly helped me secure and pay for a nice zero hour Auto-IQ which I can eventually fall back on if none of this goes through and my DME wants their loaner returned.

It's good to know Pugsy's got your back.

To 1041:

Sorry, I just spotted your return post upon typing this one out and scrolling down. I will look at what you mention about my graphs not seeming to point to UARS.

Again, any input on this is very appreciated. I would very much like to get to the bottom of what is going on with me and what is going to improve my sleep and make me feel more normal. I do feel I'm half way there physically speaking post APAP, now the mental part and occasional "not so very good nights" I would like to improve upon.

As I pointed out to 1041: Given that you are feeling some improvement and that you are using pressures of 9cm-12cm, it seems to me that if you have UARS, your PAP is likely managing it pretty decently, and hence it is NOT a surprise that waveflow under treatment would have little or no characteristics of untreated UARS

[old64mb]

my symptoms and conditions seem to point to a UARS diagnosis rather than OSA.

Do you have any upper airway restrictions - specifically problems breathing through your nose - that you know of? I'm not trying to be dismissive, but in general you're going to have a lot more success describing a set of symptoms to a sleep doctor to think about rather than conditions you've self-diagnosed.

I was noted not to go beyond stage #2 sleep. The original sleep study I had (in-lab) over 6 years ago also showed that I only reached stage #2 sleep

Have you used a Zeo to see what your sleep architecture looks like under more normal circumstances? The Zeo may not be exact, but if you're really not able to get to Stage III/IV sleep consistently, that's something to be concerned about, and may or may not be related to UARS.

As I understand it, UARS is very hard to get a diagnosis for and not even recognized by the insurance companies as a covered (Code) requiring xPAP

That's actually not true. The Stanford people put in a lot of work and UARS is now covered by most insurance companies. The protocol involves noting arousals without corresponding apneas. And Robysue, while many places still don't know about UARS, 6 years ago the ignorance was the same as it was today; UARS has been known for that long, it's just not known well.

my doctor who remains on board completely with me in pursuing this treatment with xPAP although he nor I have even discussed the thought of UARS as of this date.

Keep in mind that if you actually do have UARS, the underlying treatment is exactly the same - xPAP. The only difference is that it is:

a. a lot trickier to find an effective pressure setting, because you're not trying to splint the airway open but to smooth out flow limitations by reducing effort
b. often a bit harder to track down the right machine.

The only good news is that in general you're not going to be going towards higher end machines; in fact, there are a number of UARS patients who end up with straight CPAP because Bilevel ends up making things worse. (For that matter, so can APAP.) From an economic perspective, it may not be worth it trying to nail down an actual diagnosis - buying a used machine or two out of your own pocket would be a lot cheaper, and unless you're headed off to a major sleep center they're not going to be able to get the diagnosis right.

My goal is improved sleep and mental function without the reliance on prescription drugs.

With that said, I still am battling with a lot of emotional/mental issues. Most certainly feeling over-stressed and anxiety to the point I want to withdraw from everyone and just keep to myself.

Working on this might be more important than nailing an exact diagnosis and using some prescription drugs to stabilize, since being in a bad state with mental health can do nightmarish things to sleep quality. You may get better bang for your buck treating your mental health stuff instead of focusing on sleep. They're correlated to a much larger degree than most people realize, but if they're as extreme as you mention and if your numbers are generally ok, that is where I'd recommend looking.

However, if it were me I'd try the Zeo first; if you're not getting any deep sleep, then it's time for a full medication review with your PCP, because that's something they can help with.

Hope that helps a bit.

[jnk]

Here is something on the shape of the flow-signal squiggly thingies, especially flow limitations, with pictures and all:

http://journal.publications.chestnet.or ... id=1079416

Some docs, by the way, seem to think that pressure that is a little higher than what might normally be considered therapeutically sufficient for treating OSA in a particular patient may sometimes round the inspiratory flow curve and give better sleep.

The pressure changes of APAP (especially pressure "tests") can disturb the sleep of sensitive UARS-ish patients, I believe.

Finding one straight CPAP pressure (or two bilevel pressures, not autobilevel) high enough to round the curves might be better than APAP modality for some, from what I understand.