Need help, suspect UARS. Want to try APAP - need advice and guidance.

musculus wrote: ↑

Thu Jun 14, 2018 6:51 pm

canyouhearmeaya wrote: ↑

Thu Jun 14, 2018 3:38 pm

Well at this stage, I've decided to return and get a refund on the CPAP, and I'm going to pay to see the ENT privately (hopefully next week) and see if he can find anything.

As it this stage, it's evident that I have breathing issues impacting my sleep, but equally, I don't know yet that CPAP is the answer, and maybe the ENT will find a solution outside of CPAP.

Equally, I can always re-order the CPAP if I decide to try that route again, which certainly is a possibility as I don't really feel I had enough chance to even give it a fair shot. If I do, I expect I'll try a FFM, as it seems that part of my issue with CPAP may be restrictions in nasal airflow.. but equally, it may be that my entire problem lies within that, and if I can find a solution to that, then no CPAP is required.

Fingers crossed the ENT is good!

Did you check your Friedman tongue score?

No? I've not yet seen an ENT, I'm presuming the tongue is someething they'll look at? So far all I've had is a home sleep study.

You can do your own Friedman scoring
https://www.researchposters.com/Posters ... /SP188.pdf

And here's a bunch of stuff to read about it along with some pictures
https://www.google.com/search?q=+Friedm ... irefox-b-1

Booked in for the ENT on Wednesday.

I;d say on the Friedman thing, i'm a B if I don't stick my tongue out. If I stick my tongue right out then I can almost see all of my tonsil. I'm not sure I can see my 'Uvula'.

Does that mean much?

I think I'm going to try the MAD tonight, as I've not given that a go yet.

I've definitely got a big tongue lol, but I've also got a big head, and a big mouth. AFAIK I don't have crowded teeth, my wisdom teeth have all come through absolutely fine, although I did have braces as a kid.

When obstruction is due to tongue falling back, does that occur regardless of sleep position?

Curious as I generally sleep on my stomach, and on my sleep study spent 70% of time in the prone/stomach position, yet equally the events still occured just as frequently.

I can understand the tongue falling back in the supine position, but in my head it makes sense that gravity would work on your side in the prone position, or is that irrelevant?

You've asked some questions that I really can't confidently answer one way or the other. At best I can say "maybe".
My strengths are in the technical analysis of the data....once we have good obstructive sleep apnea data.
The diagnostic what ifs I am not so good at especially when I can't see what you are seeing. Like I have no idea of what I might think is big is what you might think is big.

You bring up some points and questions best answered by a doctor.
Or at least it's not something I can confidently answer unless it's "maybe" or "I don't know".

Pugsy wrote: ↑

Fri Jun 15, 2018 6:29 am

You've asked some questions that I really can't confidently answer one way or the other. At best I can say "maybe".
My strengths are in the technical analysis of the data....once we have good obstructive sleep apnea data.
The diagnostic what ifs I am not so good at especially when I can't see what you are seeing. Like I have no idea of what I might think is big is what you might think is big.

You bring up some points and questions best answered by a doctor.
Or at least it's not something I can confidently answer unless it's "maybe" or "I don't know".

That's fair enough, I suppose it was more just to see if anyone had any anecdotal experience/thoughts over anything! Ofc all of this I will discuss with the ENT.

Lol my brother commented on my tongue the other day when I asked him to look at my tonsils, I stuck it out and he was like bloody hell, your tongue is massive.

palerider wrote: ↑

Wed Jun 13, 2018 6:54 pm

tan wrote: ↑

Wed Jun 13, 2018 3:55 pm

You just admitted that, due to the customizeability, VPAP's ps==3 can be different than APAP epr==3, which is what I meant when added "in my config"

No, it delivers pressure the same way. I'm sorry you can't see that.

I didn't talk about pressure delivery exclusively , but rather diference in VPAP and APAP configs.

Of course, looking at reality would mess with your world view... so.. *shrug*

Either do me a favor and FOAD or go and re-read my comments.

palerider wrote: ↑

Wed Jun 13, 2018 10:52 pm

tan wrote: ↑

Wed Jun 13, 2018 10:21 pm

if by definition UARS people are more sensitive to various sleep disturbances. Do you need evidence for that definition?

Yes please, since everything I've seen says they're more sensitive to respiratory disturbances.

My understanding is people with UARS have a low arousal threshold (LAT), which makes them more sensitive to various disturbances, including respiratory. If air keeps swishing around one's face, it certainly is a factor for a person with a LAT.

There are people who are not affected by flow limitations. They have a normal or high arousal threshold who can stop breathing for a up to a minute, which present the opposite problem.

Anyway, I am speaking from my experience. Leaks, like FLs, affect my sleep. It had been an issue for me until fined-tuned my mask use.

tan wrote: ↑

Mon Jun 18, 2018 1:12 pm

Either do me a favor and FOAD

Lead the way!

tan wrote: ↑

Mon Jun 18, 2018 1:25 pm

palerider wrote: ↑

Wed Jun 13, 2018 10:52 pm

tan wrote: ↑

Wed Jun 13, 2018 10:21 pm

if by definition UARS people are more sensitive to various sleep disturbances. Do you need evidence for that definition?

Yes please, since everything I've seen says they're more sensitive to respiratory disturbances.

My understanding is people with UARS have a low arousal threshold (LAT), which makes them more sensitive to various disturbances, including respiratory. If air keeps swishing around one's face, it certainly is a factor for a person with a LAT.

Still waiting for that evidence you alleged, perhaps some papers from NIH... not just your 'opinion'.

tan wrote: ↑

Mon Jun 18, 2018 1:25 pm

There are people who are not affected by flow limitations. They have a normal or high arousal threshold who can stop breathing for a up to a minute, which present the opposite problem.

While you're at it, pop up some documentation about how struggling to get enough air isn't disturbing to some people's sleep.

tan wrote: ↑

Mon Jun 18, 2018 1:25 pm

Anyway, I am speaking from my experience. Leaks, like FLs, affect my sleep. It had been an issue for me until fined-tuned my mask use.

You're speaking about YOUR experience... your failure is ASSuming that everybody else is like you.... and they're not.

palerider wrote: ↑

Mon Jun 18, 2018 7:13 pm

tan wrote: ↑

Mon Jun 18, 2018 1:25 pm

palerider wrote: ↑

Wed Jun 13, 2018 10:52 pm

tan wrote: ↑

Wed Jun 13, 2018 10:21 pm

if by definition UARS people are more sensitive to various sleep disturbances. Do you need evidence for that definition?

Yes please, since everything I've seen says they're more sensitive to respiratory disturbances.

My understanding is people with UARS have a low arousal threshold (LAT), which makes them more sensitive to various disturbances, including respiratory. If air keeps swishing around one's face, it certainly is a factor for a person with a LAT.

Still waiting for that evidence you alleged, perhaps some papers from NIH... not just your 'opinion'.

tan wrote: ↑

Mon Jun 18, 2018 1:25 pm

There are people who are not affected by flow limitations. They have a normal or high arousal threshold who can stop breathing for a up to a minute, which present the opposite problem.

While you're at it, pop up some documentation about how struggling to get enough air isn't disturbing to some people's sleep.

tan wrote: ↑

Mon Jun 18, 2018 1:25 pm

Anyway, I am speaking from my experience. Leaks, like FLs, affect my sleep. It had been an issue for me until fined-tuned my mask use.

You're speaking about YOUR experience... your failure is ASSuming that everybody else is like you.... and they're not.

what ass did you suck this notion out of? I never wrote that everybody else is like me (unless, of course, everybody else has UARS). It looks like you have degenerated into a useless troll over the years. Raise your pressure to a hundred - maybe it'll resolve your issues, after which there is a chance for a productive discussion with evidence-shmevidence. My opinion/approaches on UARS could be more relevant that yours because, unlike you, I have struggled with UARS but have been able to fix it eventually.

Food for thought, although I am not sure you are capable of digesting it, given your struggle to properly parse my earlier and simpler statements:
Our findings suggest that UARS patients have increased levels of the stress component, somatic arousal, proportionate to the severity of their symptoms

tan wrote: ↑

Mon Jun 18, 2018 10:32 pm

what ass did you suck this notion out of? I never wrote that everybody else is like me (unless, of course, everybody else has UARS).

You seem to think that everybody that might have UARS is like you.

tan wrote: ↑

Mon Jun 18, 2018 10:32 pm

It looks like you have degenerated into a useless troll over the years. Raise your pressure to a hundred - maybe it'll resolve your issues, after which there is a chance for a productive discussion with evidence-shmevidence. My opinion/approaches on UARS could be more relevant that yours because, unlike you, I have struggled with UARS but have been able to fix it eventually.

Well, I see that I'm certainly not attempting to communicate with a rational being. Oh, and just because someone things you're *wrong* in your assumptions, does not make them a troll.

tan wrote: ↑

Mon Jun 18, 2018 10:32 pm

Food for thought, although I am not sure you are capable of digesting it, given your struggle to properly parse my earlier and simpler statements:
Our findings suggest that UARS patients have increased levels of the stress component, somatic arousal, proportionate to the severity of their symptoms

I don't believe that means what you think it does. Because "arousal" in this context does NOT mean 'easy to wake up'.

Increased SNS tone is a marker for stress. ‘‘Physical manifestations of increased SNS tone’’ (also termed somatic arousal) are associated with anxiety disorders such as post-traumatic stress disorder and panic disorder where individuals experience ‘‘tremors,’’ ‘‘sweating,’’ ‘‘dry mouth,’’ and ‘‘being easily startled’’ even when not aware of feeling anxious [22].

sympathetic nervous system (SNS)

Read more than just the summary: https://www.breathesleepandbewell.com/a ... s-2014.pdf

hmm:

Our findings confirm our preliminary observations that sleepiness and fatigue among UARS patients are correlated with their level of SA and suggest that the same is true for OSA/H patients. The decrease of SA following treatment suggests that SDB is a cause of SA among patients with UARS and OSA/H.

https://www.ncbi.nlm.nih.gov/pubmed/26739833

tan wrote: ↑

Mon Jun 18, 2018 10:32 pm

Our findings suggest that UARS patients have increased levels of the stress component, somatic arousal, proportionate to the severity of their symptoms

Maybe you have increased levels of that stress component because your personality is the kind that gets wrapped up in endless arguments with people on the internet?

Okay, SO. Saw the ENT today.

He didn't do a scope, just used a headtorch and some plyer like object to open my nose and look down my throat lol.

He said: My spetum is slightly deviated and my turbinates are on the large side, surgery would be an option, however he said he can't be certain that will fix my sleeping issue, and therefor felt it should be a last resort. From his visual observation, he said my tonsils etc looked fine, but ofc it might be worth speaking to a dentist about my bite to have that checked, I did mention I'd had braces as a kid which he recognised could be involved.

His opinion was: try the MAD device, if that doesn't work then come back. We didn't discuss CPAP at all, however it did seem he didn't really know much of UARS (seemed to think it was something that occured mainly in kids not adults, which I've not heard - but I think he was looking at it from the perspective of adenoids only.)

So this does somewhat confirm what I expected, that my nasal airflow is obstructed. However, as far as I'm concerned, I feel this sleep issue goes on 10+ years, and for most of that time I was a mouth breather, and still had bad sleep. I do feel it's got worse in the last 6 months as I've said, since moving to nasal breathing which now would make some sense, if my airways are narrowed and i've got sleep disordered breathing, then it would seem feasible it's contributed to the issue.

The 'Somnolis' MAD i've been trying is a POS, awful design, so I'm going to bin that and order a slightly better one that can be custom molded, as hopefully that'll provide better fit.

Going back to CPAP:

Obviously, my issue with the CPAP to me felt as if I was not comfortable breathing with the nasal pillows on, mainly on exhale. Now, given that I was using P10 Pillows, and now we know I have a slightly deviated septum and enlarged turbinates, I suppose that would kind of make sense wouldn't it..?

So that leads me to wonder, is it worth me trying CPAP again, but this time with a FFM?

The bit where I come unstuck is, listening to my own sound recordings, it sounds like for a lot of the night I nasal breathe, but I do start mouth breathing a bit at points. If I had issues with the nasal breathing component with pillows, will it be the same with a FFM as far as nasal breathing is concerned?

Or actually, can the pillows themselves (because of the design) created more resistance with nasal breathing in the presence of enlarged turbinates, that a FFM wouldn't?

canyouhearmeaya wrote: ↑

Wed Jun 20, 2018 6:03 am

Or actually, can the pillows themselves (because of the design) created more resistance with nasal breathing in the presence of enlarged turbinates, that a FFM wouldn't?

No. If you can keep your mouth shut while sleeping, stick with the nasal pillows.

canyouhearmeaya wrote: ↑

Wed Jun 20, 2018 6:03 am

The 'Somnolis' MAD i've been trying is a POS, awful design, so I'm going to bin that and order a slightly better one that can be custom molded, as hopefully that'll provide better fit.

I predict you will never get good therapy with a MAD. Not even with a custom-fitted (by dentist) MAD which costs about $1700 in U.S.

canyouhearmeaya wrote: ↑

Wed Jun 20, 2018 6:03 am

Saw the ENT today.

He didn't do a scope, just used a headtorch and some plyer like object to open my nose and look down my throat lol.

He said: My spetum is slightly deviated and my turbinates are on the large side, surgery would be an option, however he said he can't be certain that will fix my sleeping issue, and therefor felt it should be a last resort. From his visual observation, he said my tonsils etc looked fine, but ofc it might be worth speaking to a dentist about my bite to have that checked, I did mention I'd had braces as a kid which he recognised could be involved.

His opinion was: try the MAD device, if that doesn't work then come back. We didn't discuss CPAP at all, however it did seem he didn't really know much of UARS (seemed to think it was something that occured mainly in kids not adults, which I've not heard - but I think he was looking at it from the perspective of adenoids only.)

I don't like this doctor.