UARS just really bad snoring? Huh? Spontaneous Arousals

[socknitster]

So I am trying to find anwers to why I have so many spontaneous arousals (Arousal Index=9.6)(and zero apnea and hypopnea even at lowest possible pressures) on my last sleep study. I have come up with a couple realistic possiblities. My SSRI, now discontinued. UARS. Chronic Fatigue Syndrome (my official diagnosis) or Fibromyalgia (a related condition that I haven't been tested for recently but could very well be what I have.) Both CFS and Fibro have problems with "alpha intrusion." Some of my research shows this is the same thing as spontaneous arousals, others say it is not the same. Heck if I know.

So my sleep doc, after I questioned him about the fact that I had zero AHI even at bipap pressure 8/4 during my last psg, said I could have a split night study in 3 months to see if I even still have sleep apnea. (I had a tonsilectomy 3 years ago and this was my first psg after the tonsilectomy.) He could not give me any answers about all these spontaneous arousals, which are currently my main concern, except to say that the bipap itself could be causing it (complex sleep apnea syndrome? after research I don't really think it applies to me as I only had 4 central apneas in 6+ hours of sleep).

I had already done tons of research into these arousals, which are not associated with any measurable respiratory events, and hadn't found much. After this visit with the sleep doc, I decided to try again. I hit upon a combination of search terms that finally yielded some results and I came up with information about UARS. Most sleep centers aren't doing very sensitive tests for this (belts on abdomen and chest aren't sensitive enough--they need to put probes in your nose and/or mouth--of course they do!?!).

I contacted the sleep doc's nurse and said I want to go to a sleep center that measures for UARS this time for this next psg. I want as much information as possible and not waste any valuable time/money. They have yet to get back to me, so I started looking for one on my own.

First hit says this on their home page:

It is easiest to think of Upper Airway Resistance Syndrome (UARS) as severe snoring, although there are times when UARS can occur with little noise, particularly in children. UARS is a condition when the air passageway narrows so much that chest muscles and diaphragm have to work very hard to pull air into the lungs. UARS is at the midpoint of severity in breathing disorders between snoring and obstructive sleep apnea. As snoring gets worse, it becomes UARS. Untreated UARS can evolve into obstructive sleep apnea.

We had a power outage a few weeks ago. I didn't snore. Slow even breathing, according to my husband who was listening because he was worried. Should I still stand firm and insist on this special test? I have never heard this before about UARS, but admittedly know very little about it.

Any comments would be helpful. I need to find out why I have so many spontaeous arousals.

[sleepsurfer]

goodness....the holy grail we seek. i have this wonderful ailment, UARS myself. i think dr. park described it well when he said that our central nervous systems are basically oversensitive. when our brain senses that our airway is about to begin narrowing, we arouse. people with apnea are the opposite. their brain senses much later (after many seconds of oxygen deprivation). so, do you have a data capable pap? most times on my waveform report when i have an event i go from a nice smooth breathing pattern to a point were my breathing suddenly increases(arousal) and then i stop breathing for several seconds. my machine usually calls this a clear airway apnea. a classic spontaneous arousal! i can't even see a flow llimitation on my waveform. very frustrating.......snoring? please. this is much more complex than that.

[elena88]

Wow, that is so facininating! I hope you can take that special test to find out what is causing all those arousals..

I dont really know what causes them, I had some in my sleep study too..
I had CFS many years ago, it was quite awful, but I have since recovered.. I know what its like though..

here were my arousal numbers: I slept for one hour only..

arousal data: total number of arousals 86
leg movement arousals 0.0
snoring arousals 0.0
arousal index 77.6/hr
spontaneous arousals 41
respiratory arousals 45, respiratory arousal index 40. 6 /hr

I understand they are caused by going from one stage of sleep to another? I was only in stage one and two sleep, so I dont know what the
heck was going on.. So, can you have uars and not know it? can you have uars as well as osa at the same time? Or does uars lead to osa...

Is sleep medicine still in the infancy of testing or uars? Do you think your tonsillectomy had a big impact on your apnea results?

[socknitster]

Wow, that is so facininating! I hope you can take that special test to find out what is causing all those arousals..

I dont really know what causes them, I had some in my sleep study too..
I had CFS many years ago, it was quite awful, but I have since recovered.. I know what its like though..

here were my arousal numbers: I slept for one hour only..

arousal data: total number of arousals 86
leg movement arousals 0.0
snoring arousals 0.0
arousal index 77.6/hr
spontaneous arousals 41
respiratory arousals 45, respiratory arousal index 40. 6 /hr

I understand they are caused by going from one stage of sleep to another? I was only in stage one and two sleep, so I dont know what the
heck was going on.. So, can you have uars and not know it? can you have uars as well as osa at the same time? Or does uars lead to osa...

Is sleep medicine still in the infancy of testing or uars? Do you think your tonsillectomy had a big impact on your apnea results?

Elena,

Sleep medicine is still in its infancy, period. The first CPAP was invented in the early 80's. But yes, UARS is very new. BTW, it is my understanding that arousals cause you leave whatever sleep stage you are in--so they are a cause of changing sleep stages not a result. At least that is my understanding. On my sleep study, every time I went into a deeper stage of sleep and arousal pinged me out. You can certainly have UARS and OSA and not know it--for decades. I don't buy the statement that UARS is bad snoring and I won't be going to that clinic.

Tonsilectomy. YES! My tonsils were so large they touched during allergy season. Doctors always commented on it. When I finally got them taken out (adenoids too) after the diagnosis of OSA, it took about 6 months to a year for the healing process to finish--i.e. all the swelling went down in the airway. So my initial bipap pressure was 16/12 (16=inhale, 12=exhale) and my OSA diagnosis was based on AHI=30 during initial sleep test. After the tonsil surgery I ran my bipap on auto and pressures used were typically 11/7 or 10/7. Now, three years after surgery, just had my second PSG and even at pressures ranging from 8/4 to 11/4, there were zero apneas and hypopneas. But there were all these arousals which were not related to any respiratory events they could measure, so they call them spontaneous. That isn't to say that nothing was happening, that lab just wasn't equipt to measure. That is why I want to go somewhere where they CAN measure it before I waste more time/energy/money on bad diagnosis.

Surfer,

I ordered Dr. Parks book after I began to suspect that UARS could be causing these arousals. I'm looking forward to reading more about it. I do have a data compatilbe machine. A respironics. It doesn't give that kind of data even though the software I use was designed for clinicians. You must have a resmed machine?

In all these (3) years, I usually only show apnea and hypopneas on my data. Very seldom does it ever register flow limitation and almost never snoring. Even before my diagnosis of sleep apnea, I rarely snored according to my husband.

So, now I am eager to rule out UARS and if the spontaneous arousals are caused by the CFS (which I am probably 80% recovered from now) find a way to treat that medically.

Jen

[sleepsurfer]

i also have a respironics. pr system 1. you need to get the encore pro 2.0 software to get the waveform reports which records your every breath. i believe this info to be essential to figuring things out. yes, good call on dr. parks book. you will finish it in a day. easy reading and lots of good info.

does your PAP show no events currently. or does it also show some clear airway apneas. my ahi is usually around 2 0r 3, mostly clear airway with a few hypopneas. i'm at a pressure of 10. i have trouble staying asleep for long at much higher pressures. did you ever consider a dental device?

[Brandeen]

Hello! Are you worried about getting a sleep apnea? Or have you ever confirmed it from your doctor? I just asked because I have been familiar in the way you make moves or actions discovering what's behind something strange that you feel with your health. Regarding your abnormal arousal, it seems that you really have sleep apnea.

Don't worry much because there's a better way dealing with sleep apnea, why don't we call it CPAP alternatives? If you are using the said machine for the said form of illness. I know one who spent 4 years in studying about sleep apnea and hopefully this could help you discover and confirm your current health condition. Sleep apnea is due to attenuation of the signal originating from the brain to the diaphragm muscles as the sleeper goes into stage II sleep. This side effect of the "muscle tonus reduction" causes stop in breathing. As the CO2 increases, the sleeper experiences arousal due to rapid inhalation dragging the soft tissue into the airway. This reduction truly results to a problem.

So what should be done? Of course, your must be kept going during sleep and increase the signal from your brain to diaphragm muscles. One of the CPAP alternatives that you can use could be this stuff called Sleep Apnea Relief from Nature's Rite. It's really great according to experienced users.

Make a move now...

[kteague]

Wow, looks like one of recently prolific spammers has found your thread.

[NotMuffy]

Wow, looks like one of recently prolific spammers has found your thread.

Spammers?

What spammers?

I don't see any spammers.

[socknitster]

i also have a respironics. pr system 1. you need to get the encore pro 2.0 software to get the waveform reports which records your every breath. i believe this info to be essential to figuring things out. yes, good call on dr. parks book. you will finish it in a day. easy reading and lots of good info.

does your PAP show no events currently. or does it also show some clear airway apneas. my ahi is usually around 2 0r 3, mostly clear airway with a few hypopneas. i'm at a pressure of 10. i have trouble staying asleep for long at much higher pressures. did you ever consider a dental device?

Surfer,

I have the same version of the software, I believe. Maybe I need to explore the software more as I didn't know this aspect existed.

My bipap shows a daily AHI of 0.5-1.0 usually. It has been this way for probably 2 years or more. I even occasionally have an AHI of 0.

I was originally at a pressure of 16/12 so I know what you mean about higher pressures. I ran on auto for years and now I am fixed at 10/7.

I have tried a dental device. It was a disaster. It was the TAP appliance and my experience shouldn't deter others because my situation is unique. I have a severe overbite and very small mouth. I am about to get braces to correct this. Overbite is ONE of the predisposing factors to developing OSA. I have done a lot of research into the types of braces and orthodontia I am going to have and my research shows (published studies) that the braces (which will take 2 years) may open up the size of my mouth enough that my airway will open up and maybe I'll be able to get off of bipap. To read more about this interesting stuff go to:

viewtopic.php?f=1&t=53983&st=0&sk=t&sd=a#p502559

That is a thread started by Rooster that talks about small jaws as a cause of OSA. We put lots of links to various studies and external websites about this topic. It is a long but very informative thread.

Personally I would rather have braces than use an oral appliance. The braces are a long term investment and are a temporary discomfort/embarrassment that may reap long term benefits. If nothing else happens, my profile and smile will improve. The rest is theoretical and experimental. But I do hope it works.

Jen

[ozij]

Jen
The "flow limitation" measure by your version of Respironics are meaningless -- their non-appearance is neither here nor there.

I was under the impression that spontaneous arousals are speifically not connected to breathing events. Perhaps your doctor had reason to think those arousals were breathing related?

I would stry straight pressure if I were you, on the assumption that the machine's inhale exhale pressure changes may actually be disrupting my sleep.

[socknitster]

Well, that is the thing Ozij, if they don't measure for all possible respiratory events, like UARS, you don't really know for sure if the the spontaneous arousals are so spontaneous, do you? This is why I'm trying to get tested for UARS just to rule it out and move on. I hope its negative, but if its not I'll do what I have to to control the respiratory events so I can sleep better.

The doctor was not able to explain to me in any way I could understant that these arousals were respiratory related. I kept asking about them and he kept talking about complex sleep apnea syndrome which, after I got home and looked it up, is about central sleep apnea. I had 4 centrals in 6+ hours which I've been told is totally normal (by someone here) so I wasn't worried about them! I am worried about the nearly 10 spontaneous arousals per hour that constantly ping me out of normal sleep architecture.

(If he (the sleep doc) was making a connection to the spontaneous arousals I wasn't getting it. There was no language barrier by the way--he was Indian, an accent I "get." He is not a good communicator because I am a very good listener. I was ready for the font of information to pour in my ear and it didn't happen.)

If they are absolutely NOT caused by any respiratory events then we have to look to biological sources and that really leaves the chronic fatigue syndrome/fibromyalgia and the alpha intrusion that they cause.

Trying straight cpap was also my doctor's idea. However during my first titration I had severe central apnea every time they tried straight cpap. The doctor seems to think that this was this complex sleep apnea syndrome and CO2 blowing off causing changes in pH of the blood blah blah blah (he REALLY likes this topic). He thinks it was just because my body was unused to cpap, as it was my first time, and it would be different now. Heck if I know. I just don't think I need a new machine now that my bipap is payed for and I actually LIKE the comfort of the exhale pressure relief(who wouldn't?). I don't see how a less sophisticated machine could possibly be better at this time.

If you want to take a look at my polysom results, by chance, I posted them in this thread. (You have to scroll down a little bit. I mention that they are posted on my defunct blog and give the link there.) viewtopic.php?f=1&t=53927&st=0&sk=t&sd=a#p501771

At no time did the doctor mention UARS. I came up with this on another intense bout of research into causal agents of spontaneous arousals. Personally I think it needs to be ruled out, if just for my peace of mind. I doubt the polysom could cost any more than they already do and my deductible is IN. Time to find out, after 3 years on bipap, what the heck is actually going on!

[-SWS]

At no time did the doctor mention UARS. I came up with this on another intense bout of research into causal agents of spontaneous arousals.

UARS arousals are supposed to be the type know as Respiratory Effort Related Arousals (also called RERAs). By contrast spontaneous arousals are supposed to be of non-respiratory origins.

That said, I'd sure be willing to bet techs sometimes score RERA's as if they were spontaneous arousals instead. Maybe lacking diagnostic equipment or lacking PSG scoring skills are to blame in those cases.

Good luck getting to the bottom of your spontaneous arousals, Jen. I suspect people who score high on this HSP screening questionnaire might be more sleep-arousal inclined. I think arousals can also be related to certain other comorbid conditions such as pain, depression, etc.

[Muse-Inc]

Gee, I just scored 20 on that test. Interesting that I am more rattled than I used to be. Could be that I am returning to the more senstive child I used to be

[ozij]

Your titration was at high pressures, before your tonsilectomy.
You can set up your BIPAP to give you fixed pressure by setting IPAP to equal EPAP, no need to buy another machine.

[sleepsurfer]

socknitster,

check the report page on the encore pro software. there should be a a little blue squiggly icon next to the number of hours you slept that night. click on that and the waveform breathing report should come out.