5 reasons why UARS is harder to treat than apnea

[tiredintenn]

But I still don't see where it has anything to do with the brain.

Maybe if I explain how the brain is involved it will help you understand it a little easier.
I use a little different wording but the content really means essentially the same as someguy34 was trying to say...or at least what I think he was trying to say.

The brain in UARS patients tends to over react, for lack of a better term, to things that those of us without UARS might just sleep through. UARS patients are often what I might call hyper sensitive. The least little thing can bug them because the brain is always on high alert and trying to help by poking you (that arousal) to alert you to the fact that something is going on that it doesn't like or scares him. Problem ends up being that the arousal causes more problems than the ever so slight reduction in breathing might cause.

So it's not like where the brain is involved with central apneas and it just forgets to send the "breathe stupid" signal...it's more like the brain is standing guard and being over diligent when warning you that something seems to be happening that it doesn't like.

I have also read that most people with OSA also have some degree of UARS.. Makes sense if we think about it....start out with little air flow reductions that morph into full grown OSA. Might also explain why some people just don't feel rested despite what should appear to be adequate cpap therapy and adequate sleep quality/quantity. Maybe the sleep quality isn't quite as good as they might think. Might also explain why some people say they feel better using higher pressures (higher than what gives acceptable results on paper anyway). I have no proof to any of these thoughts. Just that it wouldn't be impossible at least in my mind when looking at things from a logical point of view.

UARS isn't that hard to treat but it is hard to diagnose (mainly because a lot of doctors and labs don't test for it) and the usual standards that we use to measure effectiveness are zero help when UARS is involved. We tend to want to measure therapy by the "numbers" given us by our machines and these machines don't really measure UARS stuff...at least reliably. Even the RERA stuff isn't absolute but it's the best we have. UARS patients that elect to try cpap therapy have to try to rely on subjective feelings and not the numbers....and in a numbers based society when it comes to evaluating medical stuff people want to validate with numbers.

For me...I would much rather have the OSA diagnosis because it is more easily measured. I am just like everyone else...like those good numbers to validate my therapy. Unfortunately it isn't always that simple and just like I talk about in my "when you don't feel the good numbers" thread....there's so much more to feeling those good numbers than just getting them. UARS patients typically start out with "good numbers" except for the arousal numbers. Makes any sort of measurement by the normal standards extremely difficult. We don't do well with "subjective" evaluations.
Good quality sleep is a very fragile commodity for a lot of people for any number of reasons.

I am thankful that the medical community is now coming around to the fact that UARS is a real problem worthy of real work and real solutions.
They are a little bit late to the parade but they are trying to catch up. No, it's not perfect but nothing ever is when it comes to medicine.
Doesn't mean we give up though....just means we have to work harder and think outside the box more and find medical professionals with an open mind who can do the same.
I have worked with many, many doctors over the years...there are good ones and bad ones and the good ones are often very hard to find.

https://clinicaltrials.gov/ct2/show/NCT02264353
It is called arousal threshold.
UARS sufferers have a low arousal threshold (ie they wake up or arouse too easily to events that normal subjects would not wake up to). They are typically light sleepers. So while there is a resistance in the airway there is a brain that is doing more than it should and identifying a problem that may not be a problem. This is why for many cpap and dental appliances are very difficult. Brain reacts to these as well.

[MaxINTJ]

https://clinicaltrials.gov/ct2/show/NCT02264353
It is called arousal threshold.
UARS sufferers have a low arousal threshold (ie they wake up or arouse too easily to events that normal subjects would not wake up to). They are typically light sleepers. So while there is a resistance in the airway there is a brain that is doing more than it should and identifying a problem that may not be a problem. This is why for many cpap and dental appliances are very difficult. Brain reacts to these as well.

Light sleeper? Would that definition include easily woken up?

Almost nothing external wakes me up most of the time. As a child as slept through a storm that had hail break out the window onto my bed, glass, hail, rain, and wind right on top of me. My parents came in and one of them carried me to an interior room and sat me down before I woke up.

I still sleep like that - almost nothing wakes me up - that I know of. However, during my sleep study the EEG showed I was awake 22 times in 6 hours. I only remembered 2. What does that mean? Can a person have UARS and be woken up that many times and not remember? It seems like having UARS=light sleeper, but I'm not consciously a light sleeper...

I have really crappy sleep. Even after a month of CPAP, there has been no change in my sleeping. The only thing I know at this point is that it's NOT OSA. Maybe UARS, maybe something else, and maybe multiple things.

[Rukel]

Light sleeper? Would that definition include easily woken up?

Almost nothing external wakes me up most of the time. As a child as slept through a storm that had hail break out the window onto my bed, glass, hail, rain, and wind right on top of me. My parents came in and one of them carried me to an interior room and sat me down before I woke up.

I still sleep like that - almost nothing wakes me up - that I know of. However, during my sleep study the EEG showed I was awake 22 times in 6 hours. I only remembered 2. What does that mean? Can a person have UARS and be woken up that many times and not remember? It seems like having UARS=light sleeper, but I'm not consciously a light sleeper...

I have really crappy sleep. Even after a month of CPAP, there has been no change in my sleeping. The only thing I know at this point is that it's NOT OSA. Maybe UARS, maybe something else, and maybe multiple things.

When someone speaks about "awakening" in terms of sleep disorders, they aren't talking about being fully conscious. They're referring to the movement or transition from a deep sleep to a shallow sleep. Doing this causes the brain to not have the time or proper rest to do the things it needs to. You being able to respond to outside stimulus in a appropriate fashion doesn't matter in this case.

Waking up that many times in 6 hours is going to be crappy. I know how you feel. Unfortunately, without more details to your specific case, we can only guess. If you don't have OSA (which may or may not be true based on what the facility is testing for), then staying on the spectrum of SA, you may have UARS. FLs can indeed cause RERAs, which in turn would explain the awakenings. You'd also typically see O2 desat events and the such.

[MaxINTJ]

Light sleeper? Would that definition include easily woken up?

Almost nothing external wakes me up most of the time. As a child as slept through a storm that had hail break out the window onto my bed, glass, hail, rain, and wind right on top of me. My parents came in and one of them carried me to an interior room and sat me down before I woke up.

I still sleep like that - almost nothing wakes me up - that I know of. However, during my sleep study the EEG showed I was awake 22 times in 6 hours. I only remembered 2. What does that mean? Can a person have UARS and be woken up that many times and not remember? It seems like having UARS=light sleeper, but I'm not consciously a light sleeper...

I have really crappy sleep. Even after a month of CPAP, there has been no change in my sleeping. The only thing I know at this point is that it's NOT OSA. Maybe UARS, maybe something else, and maybe multiple things.

When someone speaks about "awakening" in terms of sleep disorders, they aren't talking about being fully conscious. They're referring to the movement or transition from a deep sleep to a shallow sleep. Doing this causes the brain to not have the time or proper rest to do the things it needs to. You being able to respond to outside stimulus in a appropriate fashion doesn't matter in this case.

Waking up that many times in 6 hours is going to be crappy. I know how you feel. Unfortunately, without more details to your specific case, we can only guess. If you don't have OSA (which may or may not be true based on what the facility is testing for), then staying on the spectrum of SA, you may have UARS. FLs can indeed cause RERAs, which in turn would explain the awakenings. You'd also typically see O2 desat events and the such.

I had 172 arousals - which I thought were the change in sleep state. I took the 22 awakenings to mean the brain was fully conscious. 68 RERAs and several desats (down to 85%) but AHI was 0.8. The official diagnosis was mild sleep apnea - which according to my report is wrong.

[Rukel]

Light sleeper? Would that definition include easily woken up?

Almost nothing external wakes me up most of the time. As a child as slept through a storm that had hail break out the window onto my bed, glass, hail, rain, and wind right on top of me. My parents came in and one of them carried me to an interior room and sat me down before I woke up.

I still sleep like that - almost nothing wakes me up - that I know of. However, during my sleep study the EEG showed I was awake 22 times in 6 hours. I only remembered 2. What does that mean? Can a person have UARS and be woken up that many times and not remember? It seems like having UARS=light sleeper, but I'm not consciously a light sleeper...

I have really crappy sleep. Even after a month of CPAP, there has been no change in my sleeping. The only thing I know at this point is that it's NOT OSA. Maybe UARS, maybe something else, and maybe multiple things.

When someone speaks about "awakening" in terms of sleep disorders, they aren't talking about being fully conscious. They're referring to the movement or transition from a deep sleep to a shallow sleep. Doing this causes the brain to not have the time or proper rest to do the things it needs to. You being able to respond to outside stimulus in a appropriate fashion doesn't matter in this case.

Waking up that many times in 6 hours is going to be crappy. I know how you feel. Unfortunately, without more details to your specific case, we can only guess. If you don't have OSA (which may or may not be true based on what the facility is testing for), then staying on the spectrum of SA, you may have UARS. FLs can indeed cause RERAs, which in turn would explain the awakenings. You'd also typically see O2 desat events and the such.

I had 172 arousals - which I thought were the change in sleep state. I took the 22 awakenings to mean the brain was fully conscious. 68 RERAs and several desats (down to 85%) but AHI was 0.8. The official diagnosis was mild sleep apnea - which according to my report is wrong.

Do you have a chart or report we can look at? The amount of desats, RERAs, FLs along with Flow Waveform and BPMs would help in figuring out what may be causing the problem, or at least give you an idea of what it may be.

From what you've mentioned thought, 172 arousals with an EEG attached to verify is extreme. Both Arousals and Awakenings I consider the same thing; your brain moving from one state to the next. Why they would separate the two is beyond me, but I'm sure the report shows why. RERAs ARE arousals, so again, confused as to why they would separate the two. What I think they may be doing is saying 172 "arousals" is your awakenings/RERAs plus any hypops and OAs you're having, which would make that an RDI, not plain arousals. Again, it depends on what they were looking for.

AHI won't matter of course, if you don't have any apneas. If you believe you have UARS, a CPAP is not going to help. You're going to need something that can fluctuate between a high (IPAP) and low (EPAP) and possibly vary on those as well (an ABPAP) to ensure you don't encounter EPIs which would in turn lead to RERAs or aerophagia.

[MaxINTJ]

Do you have a chart or report we can look at? The amount of desats, RERAs, FLs along with Flow Waveform and BPMs would help in figuring out what may be causing the problem, or at least give you an idea of what it may be.

From what you've mentioned thought, 172 arousals with an EEG attached to verify is extreme. Both Arousals and Awakenings I consider the same thing; your brain moving from one state to the next. Why they would separate the two is beyond me, but I'm sure the report shows why. RERAs ARE arousals, so again, confused as to why they would separate the two. What I think they may be doing is saying 172 "arousals" is your awakenings/RERAs plus any hypops and OAs you're having, which would make that an RDI, not plain arousals. Again, it depends on what they were looking for.

AHI won't matter of course, if you don't have any apneas. If you believe you have UARS, a CPAP is not going to help. You're going to need something that can fluctuate between a high (IPAP) and low (EPAP) and possibly vary on those as well (an ABPAP) to ensure you don't encounter EPIs which would in turn lead to RERAs or aerophagia.

The 68 RERAs were figured into an RDI of 11.5. I do have the report in digital form but will not post it here.
PLM arousals were 40 and the others aren't identified, but the awakenings were listed as an addition, so 194 was the total. I seem to have less on xPAP, but still can't go arousal free for very long.

Number of desats isn't listed.

[HangingJohnny]

I had 172 arousals . . .

Impressive! I usually just have the one in the morning.

[MaxINTJ]

I had 172 arousals . . .

Impressive! I usually just have the one in the morning.

ROFL

I do think you've confused two words...