UARS or idiopathic hypersomnia

[SleepingUgly]

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.

In my 2002 study, the first night I had no pes, and I had a REM-RDI of 10, but averaging it with my nonsignificant NREM RDI, my overall RDI was <5 (a great example of when the mean is not the best statistic ). The next night I slept with pes (and I'll spare you the details of how hard it was for the sleep fellow to get the tube down --but I wouldn't let her stop trying). I actually slept with the miserable thing, and they found nothing. A great example of (1) night-to-night variability and (2) different instruments yield different results. All probes are not created equal. Some have more transducers (or whatever they are called) on them, some have just one or two... It makes a difference. I really don't know the instruments well, or I'd have an easier time deciding myself whether to have my next sleep study locally or not. I'm also worried that they'll miss UARS on me...

[Cubbieblue]

Sleeping - are you searching for a UARS diagnosis as well? Have you tried any forms of CPAP?

[-SWS]

Below is a Google image search, should anyone want a curiosity peek at those PES balloons:
http://www.google.com/images?um=1&hl=en ... =&gs_rfai=

Obviously not all the images are PES balloons---especially that picture of the feisty little chihuahua.

[jnk]

Below is a Google image search, should anyone want a curiosity peek at those PES balloons:
http://www.google.com/images?um=1&hl=en ... =&gs_rfai=

Obviously not all the images are PES balloons---especially that picture of the feisty little chihuahua.

But isn't it true that DSM and banned rig up their own with party balloons, duct tape, and a straw?

(Just kidding. I love those guys)

Thanks, -SWS.

[-SWS]

Good point. Also, I may need to retract my earlier assumption about the feisty little chihuahua....

I suppose it's possible that 8 or 10 barks from the gullet equals UARS.



j/k ...of course

[SleepingUgly]

Sleeping - are you searching for a UARS diagnosis as well? Have you tried any forms of CPAP?

I was likely wrongly diagnosed as Idiopathic Hypersomnia for 19 years, recently diagnosed with OSA, had surgery, and now I don't know if I'm still in the OSA spectrum or if the surgery has moved me into UARS.

Here are links to my story:

viewtopic.php?f=1&t=47828&p=436955&hili ... is#p433704

and

viewtopic.php?f=1&t=52012&st=0&sk=t&sd= ... ue#p479645

[Cubbieblue]

I just called the sleep center and scheduled my appointment. This lab DOES score RERAs and apparently just got new equipment in June to better assess them and test for UARS.

Woohoo!

[SleepingUgly]

Good luck! Let us know what happens.

[Cubbieblue]

Good luck! Let us know what happens.

Will do. They seemed pretty open to running an auto-pap trial for a few months afterwords as well if I want to try it and nothing else comes up.

[freddybearsf]

I have just recently stumbled across the UARS issue. I'm hoping that it may be the answer to something that has plagued me for about 10 years now.

I suffer from sleep apnea. I have been treated with CPAP for about 10 years. All indications are that my treatment is successful. I wear the mask every night. My AHI readings are below 5. I usually have no, or very few, apnea events. Despite that, however, I am constantly tired, fatigued, and just don't feel good. My sleep doctor is out of ideas. He says some people with sleep apnea just never get past the daytime drowsiness. Basically, I have to live with it. He has prescribed Nuvigil to keep me awake during the day. He has referred me to a therapist who basically thinks it's all in my head. I have also tried medical marijuana, which actually seems to help. I'm not as tired the following day.

One weekend recently, I was having a particularly bad time, and cruising the net looking for answers. I came across UARS. The web pages were talking about a syndrome related to, but different from, sleep apnea. It said that people with UARS don't actually stop breathing, so it doesn't show up in an apnea screen. It said people with UARS have narrowed airways which makes breathing difficult, but doesn't shut off breathing completely. But it still causes arousals. This sounds so much like me. My nose always feels stuffed up. I'm constantly blowing it. My tonsils are huge, but I've never wanted to get them removed because of my age.

The websites recommended several treatments. The simplest of which was to take an antihistime at bedtime. I've been taking Claritin, and using one of those breathe right strips. I also put a drop of the Vicks vaporizer stuff in my CPAP water. I have to say that, in the little time I've been doing this, I have been waking up feeling more rested. I'm not nearly as miserable during the day. I don't know if this is the answer, but it's certainly something I'm going to bring up when I see my sleep doctor in a couple of weeks.

Apparently this syndrome is not well-known. It's a fairly new discovery. And some doctors don't even acknowledge it exists. If this turns out to be the answer, it will really piss me off that it took 10 years to find out about it. And, I had to find out about it by myself.

Apparently the pioneering university in this field is Stanford, just a few miles down the road from me.

[Cubbieblue]

Freddy,

I suspect I have UARS as well and I am not currently on any treatment. However I have been using Zyrtec and nasal irrigation (saline) before bed and I have noticed a difference as well.

Stanford seems to get great reviews from the folks on these forums.

[SleepingUgly]

UARS is not so new (I believe the first publication about it was in 1993). There is some controversy about whether it's a separate disorder from OSA or whether it's on the continuum from simple snoring to OSA. The fact that it is measured in different ways in different places is not surprising considering the field can't agree on how to measure a hypopnea. If you want to be certain of no false negatives, you go to Stanford; however, it's not clear to me whether their sensitivity to SDB results in some amount of false positives.

AND, just because one has UARS or even OSA does not guarantee that it is the SDB that causes the symptoms, and even if it the cause (which one would never know), CPAP does not always cure it.

Are we having fun yet??

[freddybearsf]

I am more and more convinced that my problem is UARS, along with sleep apnea. SInce I've been following some of the guidelines found on the web, I've been feeling much better. I'm taking Claritin before bed. I'm using one of those nasal strips. I've turned up the heat on the humidifier. I put a drop of Vicks in my water. I also set the gap between IPAP and EPAP much higher. I used to keep it around 3 or 4. Now I have it set at 6.

I have a appointment with my sleep specialist on Thursday and I'll definitely be asking about it.

Perhaps it's time to have my tonsils taken out. That's been suggested before, but I didn't want to do it because of the horror stories I've heard.

I don't want to get to excited about it, but I truly feel much better. And the one thing that really bothers me about this is I HAD TO DISCOVER IT MYSELF. I've been suffering with this unexplained fatigue for 10 years. Nothing has ever shown up on tests. Everyone always tells me either 1) it's all in your head or 2) you'll just have to live with it.

If this turns out to be the answer, that means 10 years out of my life that I won't get back.

And I don't understand because this isn't exact'y new. Stanford published the first paper on this subject in 1993, 7 years before I started having the problem.

One of the reasons I have little faith in modern medicine. If there's no test for it, it doesn't exist.

[Cubbieblue]

All I know is that if you don't look out for yourself - no one will, not even your mother.

[SleepingUgly]

Perhaps it's time to have my tonsils taken out. That's been suggested before, but I didn't want to do it because of the horror stories I've heard.

I did it, and it wasn't fun, but it wasn't a horror story. I would caution you against having your tonsils out by anyone other than someone who knows about surgery for apnea and how to suture so maximally open the airway. The goal is not the same as a plain out tonsillectomy for recurrent tonsillitis. I had a pharyngoplasty with mine to suture it so that it leaves much of the mucosa alone and that when it heals, it will contract in a way that maximizes my airway.

I don't want to get to excited about it, but I truly feel much better. And the one thing that really bothers me about this is I HAD TO DISCOVER IT MYSELF. I've been suffering with this unexplained fatigue for 10 years. Nothing has ever shown up on tests. Everyone always tells me either 1) it's all in your head or 2) you'll just have to live with it.

If this turns out to be the answer, that means 10 years out of my life that I won't get back.

With your 10 years and my 19 years, we can buy a cup of coffee. Or something like that. I also discovered UARS myself and asked to be tested for it, and yet the test didn't pick it up (despite the fact that I had an RDI of 10 in REM the night before the pes). There is night to night variability and sleep medicine is in its infancy, and at some facilities, it hasn't even been born yet... Not all sleep studies are created equal. Some are more equal than others. And some sleep doctors are more equal than others.

So I've lost a couple of decades to this. Now the question is how am I going to solve my current problems so that I don't lose any more time. This is a full time job and doesn't leave me with a lot of free time for lamenting the lost years. Here's to hoping not to lose any more time.