PSG Results: Could this be UARS?

[deebob]

That is interesting....you guys have definitely got me considering the possibility that it isn't SDB.  I just can't really feel confident ruling it out completely until I at least do a sleep test that definitively looks for RERAs. All the tests I've done in the past haven't really looked for UARS.

There is honestly a lot of evidence supporting either theory. There have been many clues over the past year that point to UARS, but there also lots of clues that point to lifestyle/mental health factors contributing to sleep disturbances.  It's really hard to know for sure.
I'm going to look into getting a home sleep study done with AXG diagnostics, and in the meantime I'm going to talk to my doctor about Trazodone and possibly something else. I'm also going to try to get back to exercising and eating better, and being a bit more active and busy, since the last few months have been quite sedentary and depressing during Covid, and I have definitely observed my sleep quality decline along with that.

[Dormeo]

Sounds like a plan, deebob. Fingers crossed for you.

[sheepless]

no point in beating this to death if your mind is made up. I said I'd quit but you invited a response...

idk if plm is your only problem but it's the the only one you have solid evidence for at the moment.

you may have been anxious at your psg (who wasn't? ) but they say it's the gold standard for sleep data. few sleep docs will even look at machine data from oscar, resscan & the like & only view psg data as reliable. besides, idk if anxiety has much of anything to do with plm.

I don't monitor my o2 or heart rate but as most of us know from our apnea, rousing & waking multiple times per hour is both physically & mentally stressful (to put it mildly). subjectively, I'd say I had more of the feelings you describe from apnea than plm but for me that was at the rate of more than 72/hr for decades. plus intuitively I'd expect apnea to be more damaging.

my sleep test documented 20 plm arousals per hour and I can tell you it's debilitating, even after getting my ahi below 5.

all I'm asking is why ignore hard evidence, in spite if your subjective assessments, and in the absence of anything clearer at the moment to go on? why not find out?

I'll warn you that my experience with the two medicines I've tried is that they do not entirely stop my plm, but my sleep is much less fragmented; I sleep longer between awakenings. there was a time, even with pap, when I literally did not sleep more than something less than an hour at a time. now I have some 3 to 7 hour sessions every night. it's heaven. as a result I feel better than I have in decades. more than 3 years of pap helped a lot but truly feeling better didn't start to happen until I started getting some relief from plm.

again, you may be right that plm isn't bothering you, or it might not be your only problem, but what do you have stronger evidence for right now?

obviously it's up to you & unless you ask me something I'll drop this now.

I wish you well.

[Sleeprider]

Sheepless, we had a discussion about your very fragmented sleep and habits a long time ago. I remember your frustration with it all and I think I even suggested then the problem was a habit. You have come a long way and tried everything in the book, but in the end you worked it out for yourself. There was not much any of us could add other than to support your efforts to identify and implement a solution. Anyway, hang in there. You may be the one that really understands deebob’s problems.

[deebob]

I appreciate the insight. I’m really not trying to be stubborn. I’m just having difficulty ruling out UARS at this point without at least doing a sleep study that looks for it. 

I’m going to start more seriously considering other factors. I even think that there could just be a combination of things, and it’s even possible that my SDB is extremely mild but just exacerbated by anxiety and other factors enough to cause some awakenings...and if the contributing factors could be taken care of I may not be bothered by the mild SDB. There has been some evidence of my sleep improving at times when I was in a better mood, and exercising more, and keeping my mind more occupied with work and friends/family etc.  I am still puzzled by the brief period of time that I seemed to be benefiting from the Autoset, but it’s possible that other things were going well in my lifetime at the time and I wrongfully attributed it to the CPAP. 

I have also considered the possibility that there is some habitual component. Like my body has now become accustomed to waking up so frequently, or any time it experiences whatever it is during these REM periods it wants to wake up. Almost like there’s some kind of imprinted trauma, and my brain just wants to wake up during certain events in the middle of the night, even if it’s as simple as just waking up during dreams?

If I am dealing with PLM, what’s the best way of diagnosing that and treating it?

[sheepless]

yes, Sleeprider, I'll never forget you remarking that you hadn't seen such severe fragmentation & that my session graph looked like a scatterplot. you also noted my periodic breathing occurring throughout every night which started me toward recognizing plm.

deebob, looking at my ugly flow rate graphs, I was sure some kind of sdb was the cause of my fragmentation & exhaustion. I spent years & went through 3 pap modalities looking for an sdb &/or sleep hygeine related cause. turned out that apnea isn't my only sleep problem & that pap wasn't my only need.

I can't say plm is your problem but there sure is a strong suggestion of it. search the web & this site for more info. people take a variety of medicines & supplements. I don't think there's a one size fits all solution. meanwhile, your psg should be enough for your family doc or sleep specialist to prescribe you something. like most things, there's some trial & error involved.

[deebob]

Is there some kind of take-home sleep test you can do for PLM? I don’t really want to start taking some medication or try to chase PLM without a solid diagnosis of it. I’m not sure that my sketchy 3 hour PSG test is the best evidence of it.

[sheepless]

I don't know if there's a test just for plm (judging from what I've read, I doubt it) & I don't think at home sleep tests are as accurate as psg. idk what the home apnea test costs but I imagine you'll pay several hundred $ for what you already know. you have the plm documented, you can get a second opinion, but in my view ( an anonymous internet forum member, for whatever that's worth) the only thing to do is see if meds will help. If me, I'd discuss pros & cons with my doc. some things like iron & magnesium supplements are pretty benign if taken as directed, as they say. I have noticed no side effects from either gabapentin or ropinirole, although the warnings of very small chances of some scary side effects made me a little nervous.

I feel like I'm getting well beyond my comfort zone here. I have only my own experience to relate. I strongly suggest you take it up with your doctor.

[Geer1]

It is my understanding that when there is breathing difficulty, the body releases norepinephrine or adrenaline or something like that which increases the heart rate in order to wake you up because your body perceives this as danger.  This seems to match my experience exactly.

The only problem is that my OSCAR charts almost always look fine. Last night I had nothing except 1 central. Flow limitation looked okay, leak rate was fine. There were a couple of funky breathing instances that may have been RERAs, but it isn't very clear, and most of my breathing curves look fairly normal, and there doesn't appear to be any noticeable flattening around times that I woke up.  So I don't know what the hell is going on.

I'm looking into doing a WatchPAT test, and maybe a home sleep study with AXG Diagnostics because I really don't know what I'm chasing right now - all I know is I have all the symptoms and characteristics of UARS, and there doesn't seem to be anything else that can so consistently cause these awakenings every REM cycle (that I know of).

That process is your sympathetic nervous system being activated, it puts you in flight or fight mode by altering your bodies hormones etc. This is the same process whether it is your breathing that causes the arousal, an involuntary leg movement, a loud sound, anxiety, someone pinching you etc. 

This is the whole reason so many doctors readily (too readily imo) blame stress and depression/anxiety for this stuff because it can and does trigger the exact same physical processes and hormone that actual physical threats (like apnea etc) cause. Once your sympathetic nervous system is activated it changes the way most of your body works, I'll leave that for you to google. While doing so also look into the parasympathetic nervous system which is the opposite and which controls your rest and relaxation state. One of the number one treatments for anxiety is slow deep breathing, this tricks the body into entering this rest and relaxation state because you take slow deep breaths once a danger has subsided.

I am pretty certain you are dealing with some sort of issue, even your PSG indicates a higher number of spontaneous arousals during N2 sleep. UARS is/was a possibility but lets stop and think about UARS for a bit. UARS is controversial because it is inconsistent in different people. It was originally a diagnosis by exclusion but now true UARS (flow limitations causing a buildup of CO2 causing arousal) is being more recognized as a real issue that is treatable with CPAP etc. From what I have seen the people that display this type of flow restricted breathing followed by arousals seem to react best to CPAP because imo their true problem is the restricted airway. In others like yourself flow restrictions (as they are to some extent in every healthy individual as well) are present only sporadically and the issue seems to be more related to their bodies reactions and less to that of any actual physical issues with flow restriction. From what I have seen CPAP rarely seems to help significantly for these people although in some cases like myself and yourself it seems to provide some minor. Often times just enough help that it keeps a person thinking that maybe their issue is just untreated SDB and they just need to find the magic setting or machine to make it go away. I have seen too many people already that chase this treatment, they start with CPAP, then buy a Vauto (like you did), then they think well maybe ASV (like you have started to wonder about) and then before you know it you are thinking you need iVAPS or something even more ridiculous. Usually the only thing these people succeed in is wasting time and money and never finding satisfactory treatment. Another way to think about this is that you have for the most part had the same airways for quite some time so why would they all of a sudden become the main issue? In people with what I consider true UARS I believe it is likely a gradual onset as a person starts to struggle with it more and more as they age, the same way that apnea usually affects people. If your symptom onset was more abrupt than it is likely to be caused by something else imo.

There are numerous causes of poor sleep and also fatigue. It is also extremely easy to think your fatigue is just because of poor sleep when the two may not be directly tied and your disturbed sleep may actually be only minorly affecting you and the main issue is actually fatigue. Having gone through my own similar situation I believe my sleep is a part of the issue but even when I seem to sleep well I still am never rested, so what is to say the sleep is actually that significant of a factor? I am almost certain there is something behind all this stuff and the best explanation I have found is what people call chronic fatigue syndrome. It and fibromylagia are kind of linked in some ways and further linked to multi system issues, one of the most common of which is sleep disturbances. There is enough data out there that they know these syndromes are real, they just don't know why or how. Some people develop the issues after infections, some people after extended periods of high stress, what I think happens is that the body gets stuck in a loop that it can't recover from without significant support. Most stories you read about people overcoming these issues do so with dietary, medication or lifestyle modifications which to me says it is supporting and making the body healthier as a whole and possibly finding some supplement/medication that overcomes a deficiency caused by a multitude of possible reasons (genetic, infection etc). 

One example of such an instance that can be an issue for some people is SIBO which stands for small intestine bacterial overgrowth and is what I am being treated for with the supplements I mentioned earlier. One of the causes of SIBO is a slow digestive processes and some people develop SIBO after periods of chronic stress because the activation of sympathetic nervous system slows digestion. One of the types of SIBO (which thankfully I don't have) releases methane when it digests carbs/sugar, this methane slows digestion as well which leads to higher amounts of the bacteria and you get stuck in a vicious loop where your body can't recover on its own because the SIBO that is affecting your health is also making its own condition worse. As the condition gets worse it starts affecting other things because the bacteria uses up some nutrients causing malnutrition, damaging your intestines and a overall causing a surprisingly wide range of symptoms. The only way you recover is by killing the bacteria which has to be done by antibiotics, herbal antimicrobials or strict low sugar/carb diets something that most people don't do. 

Anyways that was just supposed to be an example of what could be one of a multitude of things other than UARS that could potentially be causing fatigue, a wide range of health issues and also sleep problems that most people would never even think about or realize. I personally think that digestive related problems are probably one of the most common causes of these kind of issues and hence why so many people seem to find relief with dietary/lifestyle modifications. Some other ideas include what some refer to as sensitivities or intolerance to some foods, dairy, gluten, soy, eggs and nuts being the most common, I was actually just speaking with my nutritionist today and asking her about this stuff and she said she has definitely seen this in a number of people and she confirmed it can cause things like nasal congestion. Its almost like a low grade allergy although that probably isn't the right term for it and the science on the subject is all still not understood because everyone's digestive system is different. Gluten is one of the known offenders, lactose or casein being a couple offenders in dairy products. The only real way to try and diagnose this stuff is through elimination diets, they can be a bit daunting but really it is pretty easy to start by removing say gluten and dairy for a couple weeks to see if there are any changes.

[deebob]

A lot of what you say sounds accurate to me, but there are also a couple of things that still keep me hanging on to the potential of at least some mild SDB.

I definitely think there's something going on with my nervous system being activated. The severity and frequency of my sleep disturbances are almost always connected to increased stress/anxiety, and seem to become less severe when I'm more relaxed and feel better about my health and everything.  Even last night, I experimented sleeping without the CPAP, after talking to all of you, and I went for a run for the first time in a while, and just felt a bit better in general, and I had a much better sleep than I have had in the last couple weeks. I still woke up like 5 or 6 times, but it wasn't like 10-12 times....and I wasnt using the CPAP at all.   I have also done a fair bit of reading about the parasympathetic nervous system and the Vagus nerve, and have been taking certain supplements, going for walks, going in the sauna in my building, taking cold showers, hot baths, meditating, doing breathing exercises etc.  I haven't always kept up with all of these things but they have helped me get to bed feeling pretty relaxed, but even then I sometimes will still have a bad sleep after going to bed feeling good.

I think you might be right that if I do have some kind of UARS, it's not necessarily enough of a flow limitation that it's actually a real breathing problem that needs to be treated by CPAP, it's more of just a flow limitation that my brain is disturbed by so it wakes me up.  So it's almost like if I could put my nervous system more at ease, I wouldn't wake up from the flow limitation. But I don't think I can rule it out completely because I think there is some evidence of it, particularly the fact that I was experiencing unrefreshing sleep over a year ago when I was unaware of any of this, and I don't think my mental state was particularly bad. There was a bit of a gradual onset, over the period of at least a year, until it seemed to get worse and worse, and then I became anxious about it, and then I just snapped and my nervous system became intolerant to whatever was going on and I started waking up like every hour.

I don't think I'm dealing with fibromyalgia but chronic fatigue may not be out of the question....the only thing that makes me doubt that a bit is my energy and mood immediately gets better if I happen to get a better sleep . It doesn't seem to happen all the time. A lot of my negative day time symptoms seem to be directly connected to the number of times I wake up per night. If I get lucky and happen to wake up fewer times, I will feel much more energized/positive that day.

I'm starting to think about what dietary things could potentially be contributing....but it's hard to say because I don't feel like I've ever had much issue in the past with different foods. The only thing I can think of is possibly dairy - which I don't think I've ever experimented with eliminating.  I have previously done the Keto diet multiple times in the past, including in November when my sleep problems first got really bad - and didn't notice a significant difference. And the Keto diet eliminates carbs and sugar, which also eliminates gluten. So I don't think those are significant contributors (though sugar is always good to cut back on).  I'm thinking about maybe trying to cut out dairy, because I eat quite a bit of cheese and yogurt. Meat is another one I've never cut out, but I can't really see that causing these problems.

I mentioned I am currently wearing a DNA appliance, which is like a retainer that is meant to expand my upper jaw over time, and ultimately create better nasal breathing, fix crooked bite, and also bring the lower jaw forward a bit.....but I'm also considering adding a lower retainer as well, which I originally opted out of because it costs twice as much, but it functions as a MAD, which is one thing I haven't tried yet. I previously had no interest in getting a MAD, but this particular one isn't just a MAD, it's more of an orthodontic device that also holds your jaw forward while you sleep. I'm thinking that might be all I need to eliminate whatever mild SDB I might be experiencing, because that is one thing I notice a lot in my sleep, is my jaw droops down, and I can feel my soft palate fall back and I very easily make a snoring noise, kind of like when you hock a loogie....but when I hold my jaw forward, the air flow instantly becomes noticeably better, and it becomes much more difficult to make that snoring/resistance in my soft palate area.  It will cost me more money to do this, but it's one thing I haven't tried that I think could make a difference without doing any harm other than being a waste of money if it doesn't work....but even then, it still serves an orthodontic function of remodelling my jaw so it wouldn't be entirely wasted.