PSG Results: Could this be UARS?

[Geer1]

I have been in the exact same situation last 1.5 years. Cant figure out what is wrong but know it is something. Feel like I may have found something but still need some more time to see if I continue to feel better before I consider recommending it.

Chronic fatigue syndrome is the stupidest name and I think there are probably 100s of different things that can cause such an issue. That is why it is sort of controversial and definitely why it is difficult to diagnose and treat because it is different each time. Could be infection, autoimmune, neurological, genetic, inability to digest or synthesize nutrients, hormones, neurotransmitters etc.

You say you feel better when you sleep better. How do you know you aren't sleeping better because your body is feeling better?

I would give dairy a try. It is fairly easy to cut out and one of the most common things that bothers people. Doesnt have to be long, just see if it causes any changes then slowly reintroduce.

[Geer1]

I am still not feeling like these supplements have fixed the problem but I am fairly certain they are improving the situation. I doubt they will help all people as I believe situations like this are caused by numerous different causes and everyone will have different results.

In dealing with the diet side of things I realized my digestion was more screwed up then I thought. When I follow a low fodmap diet and add in a mixture of specific carbohydrate diet I have had some improvement especially on the IBS/digestion and reflux side of things. Low fodmap and digestive intolerance isn't the only issue though and my symptoms still fluctuated. I had read about SIBO a few times and also have a cousin that struggles with it. My digestive symptoms matched this as a possibility and with other complications related to SIBO there was a chance it might explain some of my other symptoms. I got tested and tested positive for hydrogen based SIBO. The treatment is either antibiotic or herbal supplements, in reviewing some studies on the matter I figured herbal was probably as good as antibiotic. A naturopath that I was dealing with recommended supplements that I had seen mentioned in studies and also by other doctors/naturopaths that are supposed to be leaders in SIBO. The supplements were Candibactin AR and BR which are supplements consisting of well known antimicrobials such as oregano oil, thyme oil, berberine and others. Another supplement recommended was NAC (N-Acetyl Cysteine) which in the case of SIBO is used to break up biofilms. I am not certain which supplement is helping me the most but I have a feeling the NAC might be playing an important role. NAC acts as a precursor to Glutathione which is an antioxidant and it is also a well known supplement for treating bronchitis in people with COPD and other similar issues. It supposedly helps break up the mucous and biofilms and help clear these parts of the airway. This is what I believe is happening in my case and I feel as if I am slowly getting over a cold (you know when you start to heal from phlegm production).

I don't know if something like this may help you. It is hard to say without knowing your symptoms better (which is why I asked if you have also felt like breathing quality has declined etc). I believe in smaller quantities these supplements are fine to try, extended use or high quantities obviously may cause issues.

My journey has led me to believe that I must consider all avenues and not only be stuck on thinking it might be one simple issue (like a restricted airway). I have always considered even my diagnosis of sleep apnea to be related to whatever it is that I am dealing with as I don't believe I have true sleep apnea (at least not in the sense of tongue/throat/palate related issues). My best improvement has come over these past few months in working on a better diet and treating the digestion side of things. Even before starting the Candibactin and NAC I was noticing some improvement not only on digestion but also on reduced nasal congestion etc.

Just some food for thought. Not sure if you ever inquired further about getting your PSG scored for RERA's but that should tell you if this is UARS related and something else worth thinking about/looking into again if you haven't done so yet.

[Geer1]

And just like that I think I have confirmed or at least am highly suspicious that I have a dairy intolerance and looking back it all kind of makes sense.

I had been wondering about dairy for a while and a couple nights ago I was running low on stuff to eat for supper so I had a couple bowls of cereal. I felt bloated and gassy and then yesterday was bloated, dealing with constipation symptoms and intestinal area was tender to touch.

Now here is the kicker that I just put together today when doing some more research. There are two common known causes of dairy intolerance. One is towards lactose, one is towards a specific type of casein protein (alpha s1 casein).

Growing up and even to this day I hear stories of how I used to be lactose intolerant as a baby. Lots of projectile vomiting stories that like to resurface at family gatherings... My parents found out that I could tolerate goats milk and that is what I drank until years later when it appeared that I could handle cows milk. The reality that my parents either didn't realize or had since forgotten is that goats milk has lactose and what I was intolerant to was likely the protein not lactose.

This would make sense and support my bloating the last couple days as the milk I used was lactose free milk.

Another point to help support this theory is that in my first couple weeks of low fodmap diet I was not eating dairy. Then I found out about lactose free products and how they were fine to eat on low fodmap diet. I still didnt eat a lot of dairy but started incorporating lactose free milk and yogurt into my diet every other day or so plus the odd bit of butter and cheese. A little while after I felt like my progress had been set back a bit but I didn't know why. I wondered if it was the SIBO, possibly die off symptoms, or just whatever my health issues are flaring up. Looking back I have a feeling it was the reintroduction of dairy products.

Intolerances like this whether it be related to dairy, gluten, complex carbs, soy, eggs and nuts(some of the most common ones but others exist as well) can wreak havoc on your entire bodies well being. I believe that intolerances like this that are often a cause of chronic misunderstood health issues and also chronic fatigue like symptoms. The hard part is diagnosing the intolerance as there are no good tests and all you can try is elimination diet after elimination diet until you find an answer.

I will be looking to completely cut dairy out of my diet for a while and see if/how much it improves symptoms.

The strangest thing is that prior to starting these diets I wasnt even aware of just how messed up my digestion was. I was just so used to it that it seemed like a minor inconvenience if anything. Only after starting to feel a bit better did I realize how bad it was.

[Geer1]

I ordered a subscription to uptodate to do some research on digestive problems. Uptodate is one of the main resources doctors use for information. They don't have a lot of info on UARS but here are some of the main points of interest I thought would be worth sharing, they fall inline with my views on UARS.

Upper airway resistance syndrome — Upper airway resistance syndrome (UARS) occurs when airflow limitation due to increased upper airway resistance (ie, RERAs) induces arousals from sleep, leading to excessive daytime sleepiness [78].

During recordings of nasal airflow, periods of flow limitation longer than a hypopnea (minimum one to three minutes) are often used as indicative of sustained upper airway resistance [79]. However, there is no consensus about the optimal detection, proper measurement, or degree of clinical impact.

While UARS was previously classified as an independent disorder, it is now considered a type of OSA.

Unlike patients with classic OSA, patients with UARS have few discrete apneas or hypopneas or episodes of desaturation, but do have prolonged flow limitation and evidence of arousals on PSG, albeit with less overall sleep fragmentation than OSA. Thus, the study may be interpreted as absent or mild OSA, requiring no treatment.

Partial upper airway obstruction is treatable with nasal continuous positive airway pressure (CPAP) and patients have good adherence to therapy [79]. We have also used dental appliances with good success.

[deebob]

So I've had some ups and downs since I last posted. Basically the last time we talked on this thread I had been on a really bad streak of sleeping poorly. Waking up like every hour, feeling like I was gasping for air as I woke up, and my nervous system was getting super antsy.  Everyone was kind of leaning towards my issue being something other than SDB, so that day I started to consider the possibility that my sleep issues are maybe just caused by something else, particularly mental health issues like anxiety/depression, and maybe some lifestyle things like diet, lack of exercise, and maybe spending a lot of time alone working at a computer. Loneliness has definitely been a problem for me the past 6 months or so and having such bad sleep problems is just making it worse because I don't really have the energy or motivation to do as many social activities or try to go on dates.  

So that day I decided I was going to get off my ass and go for a run, get the endorphins flowing and tire myself out.  That night I slept without the CPAP, and had one of the better sleeps I have had in a long time. The next night I did the same thing, and slept decently again without the CPAP. It wasn't perfect but it was OK.  Then something occurred to me, I had been using auto CPAP settings since I began my second CPAP trial (for about two weeks), mainly because the clinician set it to an auto range and I lied and told them I had never done a trial before so I had to play a long and use their settings for a bit. So I had the pressure going all the way up to 10 or 11 sometimes. And I realized that the frequent awakenings that I was experiencing in the nights, that felt like RERAs, were probably actually from me struggling to breathe against a higher pressure (6-8). So I tried lowering the pressure back to around 8-8.4 which is where I found some success back in February, and I slept pretty well. 

 I carried on doing this for about a week or two, and my sleep was in a fairly stable place. I was feeling pretty good. But then sure enough, it started to slip again, and I started gradually experiencing more and more awakenings until I was back to having crappy fragmented sleep again, even with the CPAP feeling comfortable with the same settings that worked before. Nasal congestion seems to affect the number of awakenings as well which is another clue towards SDB.

Then about 10 days ago I developed some strange symptoms where I almost felt like I was sick....I felt nauseous, had slight chills, felt very fatigued, and then developed IBS symptoms. And this went on for about a week. I started to wonder if I maybe got Covid, but the symptoms gradually mellowed out a few days ago. They seemed to come about after a particularly bad night of frequent awakenings where I'd wake up with adrenaline and heart racing, so I think the constant stress my body is going through, from flow limitations and whatever else, might be causing it. I have seen Dr. Steven Park and Dr. Krakow talk about how UARS can cause chronic low grade stress, when your body is struggling with breathing all night and feeling in danger, so this kind of lines up with how I was feeling. I've also been kind of achey and had a sore back and sore legs...so I'm also thinking it might be a bit of fibromyalgia, which I've also heard is connected to UARS.   I've considered the possibility that diet is an issue, but it seems to me that these sort of symptoms aren't causing the sleep problems, but are caused by it. Since they seem to go away as soon as a have a decent night or two. I started eating kimchi and taking probiotics, and cutting out cheese, and the IBS has gradually gone away. and my body is feeling a bit better.

Another thing I've noticed lately that is concerning me, and seems to point to SDB as well, is I attempted to sleep without the CPAP again about a week ago, to see what would happen, and I couldn't fall asleep. Just as I dozed off, I would snore myself awake. I catch my self sort of snorting, or feeling resistance at the back of my soft palate, like if I was trying to hork some mucus into my mouth, and it stops me from falling asleep.  I tried again this morning to roll over and go back to sleep without the CPAP on, and I couldn't do it. I'm not sure why this is happening now and not 3 weeks ago, but it's a bit troubling.  I'm considering getting the mandibular advancement add-on to the upper orthodontic device I'm currently wearing, which would lock my jack in place and pull it a bit forward, which I think would prevent this snoring issue a bit.
I'm considering going back to using the BIPAP, but I experimented with it yesterday during the day, to see how it felt, and it felt so unnatural. I don't know if I have a defective machine, or that's just the way it is, but it is so much less comfortable than the Autoset for me. The rhythm of breathing is so abrupt and clunky. It's like this intense sharp inhale, then it just suddenly drops off into nothing for the exhale. When I breathe with the Autoset I almost can't even feel anything, it's so smooth.  The problem is I think I would benefit from higher pressure, but I need to have the exhale at 5 or lower. So I'd need to be at like 9 or 10 IPAP, which feels so intense on the BIPAP, with the sharp drop off into the exhale. I am positive that I will not only have trouble sleeping with that, but I will also have centrals.  I experimented with all the different levels of Cycle and Trigger and none of them really made it feel any better. It almost felt smoother setting everything to Very Low, but even that felt quite unnatural.
I'm starting to think I'd like to try an ASV, just so I can have higher pressure, but have some back up for the centrals. I have no idea if that will feel strange to me as well, but currently BIPAP isn't working for me at all, and the Autoset has varying success and doesn't seem capable of getting the job done completely, even though it feels very comfortable for me.


My recent charts show some RERAs that were flagged, which I know can be false, but these do seem to coincide with flattened breathing curves and flow limitation, so there might be something to it.  There are also other instances of flattened curves, but as usual, my Oscar data doesn't look that bad. But I'm still experiencing frequent awakenings where it feels like I'm gasping for air, and having that startled feeling like when something suddenly scares you and your heart skips and you get a shot of adrenaline. I can't really see what else would cause that.  I'm possibly going to look into getting some PLM medication, but even PLM doesn't really match this 'gasping' awake feeling I'm having.

I spoke with an ENT on the phone the other day but couldnt see him because of Covid, but we made an appointment for an in-person examination on July 28, so hopefully I can get something figured out then.  I don't really know what my options are at this point except for trying ASV, messing around with BIPAP settings and maybe trying to get used to higher PS without having centrals - if that's even possible, trying a MAD, maybe getting some kind of nasal or soft palate surgery.  I probably need to just get another sleep study done, or try to do a WatchPAT test, to try to confirm or deny what is going on....because I don't want to keep spending money on things, or have some kind of surgery, if I don't even know what the exact cause of the problem is. I know I continue to be stubborn about it being SDB related, but there are just too many clues that point to UARS for me to ignore it - including things that I observe and feel when I'm in bed each night. And I'm not comfortable ruling it out yet when I've heard so many stories of people with all the same symptoms and experiences as me being dismissed for so many years and going untreated because no one considered it.  

My theory for many months has, and continues to be, that it's a complex issue (which UARS is known to be), that involves an underlying structural issue in my airway (which is supported by the fact that I have many physical features known to cause UARS, as well as snoring that I have recorded), and the severity of my fragmented sleep is determined by lifestyle and mental health factors that affect my nervous system's sensitivity to the breathing issues. Which is why I think some times I can get away with sleeping better when I'm in a better mental/physical condition, and it seems to slip when I'm feeling worse. I feel like the underlying issue is always there, it's just a sliding scale of severity depending on all these other factors. But this is just a theory at this point.  PLM and dietary issues are in the back of my mind, I just don't see as much evidence to support them.

That's the end of my venting for today. 

[Dormeo]

Interesting post. One of the big takeaways to me is that going out for a run made you sleep better and feel better. It wasn't clear to me, though, whether you are keeping that up as a daily routine, now that your symptoms of whatever bug you had have abated. I think a really good plan would be to run every day and stick with the Autoset if it feels better to you. I know that's ignoring a lot of nuance and a number of possibilities, but really focusing on a simple plan and giving it, say, a month might reduce your sense of anxiety.

[Geer1]

I highly doubt you would tolerate ASV if you don't find the Vauto comfortable. ASV has the same waveform, no timing controls (sensitivity settings) and increases the pressure difference to literally try to force you to breath. Have you even tried PS > 4 yet? ASV will try to hit you with PS > 10 at times, it is a completely different animal and many people have trouble tolerating it.

The primary treatment for UARS is pressure support but you say this is uncomfortable.

[slowriter]

I highly doubt you would tolerate ASV if you don't find the Vauto comfortable. ASV has the same waveform, no timing controls (sensitivity settings) and increases the pressure difference to literally try to force you to breath. Have you even tried PS > 4 yet? ASV will try to hit you with PS > 10 at times, it is a completely different animal and many people have trouble tolerating it.

100%.

If you have a problem tolerating fairly moderate PS on a VAuto, there's no way you will tolerate ASV.

[deebob]

Well my main problem is that the huge difference in IPAP and EPAP causes me to stop breathing and have a central. I notice this even when I'm laying in bed awake. The huge inhales creates this imbalance that makes me 'forget' to breathe. Which is why I thought the ASV would make up for that.  I don't know if it's a problem of discomfort...I may be able to get used to that if I didn't stop breathing.  But you may be right that it could be too much for me to handle. I may just get to a point where there's nothing else to try if the other machines don't work and a MAD or surgical interventions do nothing. 

Right now I just feel like something's off with both the Autoset and Aircurve. Like sometimes I feel like I'm close to something that works, but it's just a bit off. With the Autoset it has allowed me to have a few surprisingly good nights where I didn't wake up very often (I even had one night where I didn't get up to go to the bathroom which never happens). But now I'm currently back to having nights where I wake up like 6-10 times. It feels like slightly higher pressure would probably help, but then the EPAP goes up and causes RERAs, which I'm pretty sure I confirmed was happening when my pressure went up to 9-10 and I brought it back down to 8 and eliminated that. I think my nose is congested again, which I had seemed to eliminate a couple weeks ago when the Autoset was helping a bit more, so that may have something to do with it. 

 But the Aircurve was just not helping at all, even with the same 8cm of pressure and 3 PS. The Autoset has almost no 'feeling' to it, except a slightly more powerful inhale, but the exhale isn't noticeable. The Aircurve has a very pronounced inhale and drop off to exhale that is kind of jarring, even at the same settings.  I'd like to experiment with the Aircurve some more but I honestly tried a lot of different pressures and settings back in April/May with no success so I'm not very confident about trying it again.

Last night: https://imgur.com/a/DpcpWlO

I know my Oscar charts looking consistently pretty good, but there is pretty often flow limitation and snoring present, and even when those things look good, when I zoom in I still see a fair bit of flattening on the tops of the curves, even if it's a bit mild, it's very prevalent throughout the night. Is that not a sign of flow limitation or some kind of resistance?   AND that's with CPAP...so would those breaths not be worse if I was not using CPAP?

[slowriter]

Well my main problem is that the huge difference in IPAP and EPAP causes me to stop breathing and have a central. I notice this even when I'm laying in bed awake. The huge inhales creates this imbalance that makes me 'forget' to breathe. Which is why I thought the ASV would make up for that. 

Oh, in that case, then yeah; that's what it's designed for. it "reminds" you to breath by increasing the PS; so breathing for you.