UARS or idiopathic hypersomnia

[Cubbieblue]

My doctor is open to that, and so am I, but how the heck am I supposed to figure out pressure settings, masks, etc.?

It also seems like treating UARS with a CPAP is a no-no. It should be a bi-level or an ASV for it to work properly. Is there anyone here with UARS that can comment on their treatment?

[jnk]

Some people snore at night, have frequent arousals or micro-arousals and are tired or sleepy in the day. They can be said to have upper airways resistance syndrome (UARS) if there are indications that resistance is high at the time of arousal, even though there is not enough reduction in ventilation or oxygen saturation to satisfy definitions of hypopnoea. Some of these people are tired or sleepy in the day. Of these, some will have an improvement in symptoms if the high upper airway resistance is successfully treated. There are currently no certain ways to identify these people. Arousals are identified by episodes of wakefulness in the EEG signals of the polysomnography (cortical arousals) or by accelerations in pulse rate (autonomic arousals). . . . If the daytime symptoms resolve with CPAP, these people could be considered to have a significant sleep disturbance due to episodes of high upper airway resistance even though they have very few apnoeas or hypopnoeas. . . . there are no useful guidelines for clinicians. It makes sense to try treatment with CPAP or a dental appliance in patients who have at least moderate daytime symptoms and some indication of resistance related arousals. When more tolerable treatments become available, this condition will be better studied and understood.-- "Diagnosis of sleep apnoea: some critical issues," William A. Whitelaw & Keith R. Burgess, Indian J Med Res 131, February 2010, pp 217-22. http://icmr.nic.in/ijmr/2010/february/0212.pdf

There are plenty of self-titration experts on this board. Personally, I prefer lab titrations, whenever possible.

And it might be worthwhile to try PAP by renting for a month before investing too much time and effort into something that may, or may not, solve your sleep problems.

Some people "with UARS" are people with sort of a milder version of OSA. Some people "with UARS" have a super-sensitive airway and sleep-brain and sort of have the opposite of OSA. My point is that instead of getting too caught up in definitions and diagnoses, it can make sense from a patient's point of view simply to find out if PAP makes him or her feel better. Sometimes it does. Sometimes it doesn't. It is worth it to find out before getting too caught up in the process of proving things to insurance. That's how I see it, anyway.

I'm no pro, though, just a patient who likes spouting off his personal ideas on the Internet.

[SleepingUgly]

It is not the case that you necessarily need bilevel for UARS, and you most certainly don't need ASV for run of the mill UARS with no other issues.

Speaking from experience, it is easier said than done to titrate oneself on Auto-Pap, and my personal preference would be to have a titration in the lab as a starting point to tweak your own pressure. Also, I would wonder, how is it that a NPSG in a lab can't capture the UARS, but the data-capable APAP could? (Unless the APAP uses the Chicago criteria to score hypopneas and the NPSG uses the AASM Recommended criteria... ) Seriously, this is why I keep encouraging you to ask more questions of the lab--do they score RERAs? Would they titrate you to eliminate them? It sounds as if you're determined to have the sleep study at the lab now, so go for it, but ask the questions so you know what to make of possible negative findings. If it's a lab that is using lenient criteria for scoring hypopneas, they score RERAs, they say you have none and that you have no FLs, I might ask for an APAP trial but I would not kill myself trying to make it work with APAP. But that's just me.

[Cubbieblue]

"It is not the case that you necessarily need bilevel for UARS, and you most certainly don't need ASV for run of the mill UARS with no othe

r issues."

The recent interview between Dr. Krakow and Dr. Park seems to point otherwise. Dr. Krakow says he doesn't use CPAP on any of his patients anymore, and prefers to use the other two, primarily ASV. I am just going off of what I heard in that interview.

If it's a lab that is using lenient criteria for scoring hypopneas, they score RERAs, they say you have none and that you have no FLs, I might ask for an APAP trial but I would not kill myself trying to make it work with APAP. But that's just me.

Makes sense to me. Can you describe what is a lenient criteria? Do you have specific questions that I could call and ask on Monday?

For what it is worth, Dr. Park commented on my similar thread over at apnea forum and said the following, which I found interesting: You have a relatively high number of spontaneous arousals which are most likely respiratory-related, but not severe enough to be picked up as a RERA.

[Cubbieblue]

Some people snore at night, have frequent arousals or micro-arousals and are tired or sleepy in the day. They can be said to have upper airways resistance syndrome (UARS) if there are indications that resistance is high at the time of arousal, even though there is not enough reduction in ventilation or oxygen saturation to satisfy definitions of hypopnoea. Some of these people are tired or sleepy in the day. Of these, some will have an improvement in symptoms if the high upper airway resistance is successfully treated. There are currently no certain ways to identify these people. Arousals are identified by episodes of wakefulness in the EEG signals of the polysomnography (cortical arousals) or by accelerations in pulse rate (autonomic arousals). . . . If the daytime symptoms resolve with CPAP, these people could be considered to have a significant sleep disturbance due to episodes of high upper airway resistance even though they have very few apnoeas or hypopnoeas. . . . there are no useful guidelines for clinicians. It makes sense to try treatment with CPAP or a dental appliance in patients who have at least moderate daytime symptoms and some indication of resistance related arousals. When more tolerable treatments become available, this condition will be better studied and understood.-- "Diagnosis of sleep apnoea: some critical issues," William A. Whitelaw & Keith R. Burgess, Indian J Med Res 131, February 2010, pp 217-22. http://icmr.nic.in/ijmr/2010/february/0212.pdf

There are plenty of self-titration experts on this board. Personally, I prefer lab titrations, whenever possible.

And it might be worthwhile to try PAP by renting for a month before investing too much time and effort into something that may, or may not, solve your sleep problems.

Some people "with UARS" are people with sort of a milder version of OSA. Some people "with UARS" have a super-sensitive airway and sleep-brain and sort of have the opposite of OSA. My point is that instead of getting too caught up in definitions and diagnoses, it can make sense from a patient's point of view simply to find out if PAP makes him or her feel better. Sometimes it does. Sometimes it doesn't. It is worth it to find out before getting too caught up in the process of proving things to insurance. That's how I see it, anyway.

I'm no pro, though, just a patient who likes spouting off his personal ideas on the Internet.

Makes sense.

[jnk]

. . . Dr. Krakow says he doesn't use CPAP on any of his patients anymore . . .

The good doctor, Dr. K., is a brilliant man who does good work for patients who haven't been helped by more traditional methods. He can be a bit cutting edge, though.

I like docs who push the envelope with their methods of treatment, and UARS is just the sort of thing that needs docs like K. involved. However, his more experimental approaches may not always be quite the mainstream yet, such as super-high bi-level pressures with large deltas.

Read all you can. Study all you can. But you may find benefit in differentiating in your mind the mainstream from the cutting edge, or you could end up getting on your doc's nerves, depending on your doc's tolerance of such things.

[Cubbieblue]

. . . Dr. Krakow says he doesn't use CPAP on any of his patients anymore . . .

The good doctor, Dr. K., is a brilliant man and does good work for patients who haven't been helped by more traditional methods. He can be a bit cutting edge, though.

I like docs who push the envelope with their methods of treatment, and UARS is just the sort of thing that needs docs like K. involved. However, his more experimental approaches may not always be quite the mainstream yet, such as super-high bi-level pressures with large deltas.

Read all you can. Study all you can. But you may find benefit in differentiating in your mind the mainstream from the cutting edge, or you could end up getting on your doc's nerves, depending on your doc.

Word.

[SleepingUgly]

However, his more experimental approaches may not always be quite the mainstream yet, such as super-high bi-level pressures with large deltas.

What's a large delta mean?

[SleepingUgly]

Can you describe what is a lenient criteria? Do you have specific questions that I could call and ask on Monday?

Read this article for definitions of hypopneas and the impact of different scoring systems on the AHI:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635578/

I would ask which critiera they use to score hypopneas. If they require oxygen desaturations and you are thin and have already demonstrated in one PSG that you do not desaturate (your oxygen saturations were 96% of above, I believe), I would be very leery of using that facility. I would also ask if they score RERAs. If they do score RERAs, then I would ask, "If I'm found to have sleep disordered breathing, in a titration, do you titrate to eliminate RERAs/arousals?" I really do not know enough about RERAs vs. FLs (I think this is some of the debate with Dr. Krakow), so I don't know if even sleep labs that do a good job with UARS titrate to eliminate FLs. Perhaps some of the sleep techs here can weigh in on this, and whether there are any specific questions Cubbie should ask about instrumentation and not just about scoring.

[miketech]

I believe the high deltas jnk mentioned, might mean the difference between the inspiratory pressure and the expiratory pressure. For example maybe 16 cm inhale, and 10 cm exhale. (but I'm just guessing).

Also, Sleeping.... (sorry, I can't bring myself to calling anyone ugly), he could also find out what brand of test equipment is being used in the sleep lab. After learning here at cpaptalk, I noticed that what I had been tested on was Resmed equipment, while I was later given a Respironics M machine. So naturally, due to different scoring algorithms, my results of my home therapy are guaranteed to appear better than the sleep test results. You can search cpaptalk to find the hows and whys of the scoring methods.

[secret agent girl]

.

[-SWS]

What is "PES"? I looked around some, but didn't find it... TIA

I think "P subscript es"---meaning "esophageal pressure".

Pes sensor(s) or Pes measurement(s) are two examples used in context. Those esophageal sensors are each small measurement balloons wedged in the esophagus. My understanding is they are hard to sleep with. That, in turn, can make sleep-related diagnosis difficult. Thus many labs correlate flow limitations (FLs) with respiratory effort related arousals (RERAs) for UARS diagnosis instead.

[jnk]

However, his more experimental approaches may not always be quite the mainstream yet, such as super-high bi-level pressures with large deltas.

What's a large delta mean?

"The difference between the inspiratory and expiratory pressures is termed delta P, and is synonymous with the term pressure support."--http://www.saintalphonsus.org/outreach/ ... Rounds.pdf

[jnk]

Krakow's work was discussed a bit in this thread, with some amazing info and perspective on it provided by -SWS and rested gal:

viewtopic.php?f=1&t=40009&p=353075#p353053

Here are Krakow's own words on the subject:

viewtopic/t26622/UARS--A-Critical-Link- ... ml#p230227

[Cubbieblue]

Thanks for the links!