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

ChicagoGranny wrote: ↑

Fri Jun 01, 2018 6:19 am

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:24 am

Does anyone know, if the restriction IS caused by reduced airflow through the nasal passages and not jaw/tongue related

Predominantly, in obstructive sleep apnea, the blockage is in the "throat". The soft palate and tongue collapse to block the airway. You can see this here - https://www.youtube.com/watch?v=-gie2dhqP2c&t=2s

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:24 am

when I nose breathe it feels like I'm restricted at times

You should have a consultation and examination by an ENT. On the first visit, he will perform an endoscopy of your nasal airways as far down as the vocal cords. This is an easy procedure and just takes a couple of minutes. Typical problems that are seen are enlarged turbinates and a badly deviated septum. These can be corrected easily with surgery. The results are often amazing.

The ENT will also look at your tonsils and adenoids. In some people they are enlarged and surgical removal is recommended.

The ENT may also check you for allergies. Allergies can cause the swelling of tissues in the nasal passages. There are good treatments available for allergies.

Good luck.

Yes that's why I don't think it's OSA, it might be, but listening to my recording it doesnt sound like OSA, but breathing related still likely.

I will book a doctors appointment, but they're so useless where I am, I have no faith. To even get a basic blood test is difficult, let alone ask to see a specialist.. and if you go in at all self diagnosing they instantly try and palm you off - it's a joke. I went in 2 months ago explaining I was exhausted etc, they said 'try running instead of your normal exercise'. But, i'll try. Might move surgery first.

If it is something like you've mentioned, turbinates/septum etc.. will the APAP still possibly help? Ofc if surgery is available and practical its an option I'd like to explore, but realistically on the NHS that would be 6-12 months away. I can't keep going th eway I am so I need to find some relief now, which is why i've ordered the APAP to try.

Do you think it might work?

Edit: with regards to allergies, I used to have quite severe allergies growing up, namely hayfever and sometimes to pets. Ever since I trained myself to nose breathe, they've disappeared 90%. The only time I flare up a bit is if I mouth breath when exposed to them, in combination with eating a not so great diet (I expect due to inflammatory reason.) But if I keep my diet whole foods, low sugar etc, I don't get any flare ups.

It's the nose bit that's got me wondering, the fact that moving to nose breathing seems to have made it all my symptoms worse.Ofc again self diagnosis is just guess work, but it seems to line up on a time line, and would make sense if its breathing related. That's why I'm praying the APAP somehow allows me to alleviate my symptoms and overcome it, at least until I can find a more permanent solution if that is the case and it's advised (i.e.g surgery.)

Here's an odd sounding event I captured the other night:
https://vocaroo.com/i/s0FZqn9Y0Fuz

I have no idea how I'm making that clicking noise.

I seem to move around a lot, constantly moving positions, and it seems to often be preceded by bouts of funny sounding breathing and breathing getting louder..

This was last night:
https://vocaroo.com/i/s1CUZPnpxIT3

Almost sounds like I gulp, then the weird darth vader breathing starts for abit. That kind of darth vader breathing seems to be very intermittent. Then at 58 seconds it sounds like I stop breathing for 10 seconds.

Then in this one:
https://vocaroo.com/i/s17ZxChLa5D5

as I move you can hear that almost 'scratching your throat' noise, when you press you tongue against the roof of your mouth and scratch your throat.. I've heard that happening quite a lot over the last few nights, the recording only got an hour last night as it cut out, so that isn't a very great example. Almost sounds like a pig lol. Not sure why I'm doing it though because I don't do it when I'm awake!!

Certainly seems like some odd sounds to me

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 7:51 am

Here's an odd sounding event I captured the other night:
https://vocaroo.com/i/s0FZqn9Y0Fuz

This one sounds like you snored, woke yourself up and moved.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 7:51 am

This was last night:
https://vocaroo.com/i/s1CUZPnpxIT3

Sounds like typical obstructive sleep apnea.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 7:51 am

Then in this one:
https://vocaroo.com/i/s17ZxChLa5D5

It's hard to separate the breathing noises from the body movements.

If it were me, I would stop further self-diagnosing immediately. Then concurrently work on getting an ENT appointment and procuring an APAP. Pugsy has given you good advice on machine model and initial settings.

You could be like Gramps. He had and still has typical obstructive sleep apnea - narrow airway is blocked by collapse of the tongue and soft palate. He also had enlarged nasal turbinates. He had them surgically reduced, and the results were just short of miraculous. But, he still has sleep apnea and uses CPAP. You may also have both conditions. You need an ENT to evaluate your nasal passages. You can do on your own (with forum members' help) an evaluation of whether APAP helps.

Then I trained myself to nose breathe during sleep, by using medical tape to tape my mouth shut. Apart from a few times being woken by the fact I was trying to gasp for air through my mouth for some reason, I managed to sleep 'okay' doing that.

Ever since then, all my symptoms got worse. More fatigued, brain fog, sex drive has gone right down, just generally feeling bloody exhausted despite sleeping 8 hours a night.

Why in the hell would you keep on forcing nasal breathing when it is destroying you? Go back to mouth breathing until you can get some issues resolved.

ChicagoGranny wrote: ↑

Fri Jun 01, 2018 8:14 am

Then I trained myself to nose breathe during sleep, by using medical tape to tape my mouth shut. Apart from a few times being woken by the fact I was trying to gasp for air through my mouth for some reason, I managed to sleep 'okay' doing that.

Ever since then, all my symptoms got worse. More fatigued, brain fog, sex drive has gone right down, just generally feeling bloody exhausted despite sleeping 8 hours a night.

Why in the hell would you keep on forcing nasal breathing when it is destroying you? Go back to mouth breathing until you can get some issues resolved.

Its not in purporse, it's so habitual now! I trained myself 6 months ago and have been doing all this time as I never made the link! I hadn't even considered sleep, was having hormones etc tested as presumed it was something to o with that but all blood work came back, then someone made the suggestion of sleep apnea and it all started to make sense. Short of taping my nasal passages closed at night, not too sure how to stop lol! Thankfully the apap arrives Monday so hopefully that will help! Praying.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 11:23 am

Thankfully the apap arrives Monday so hopefully that will help!

Try to avoid backsleeping until you are using CPAP. It may give you a little temporary relief.

ChicagoGranny wrote: ↑

Fri Jun 01, 2018 12:40 pm

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 11:23 am

Thankfully the apap arrives Monday so hopefully that will help!

Try to avoid backsleeping until you are using CPAP. It may give you a little temporary relief.

I never backsleep conciously, I can't even if I try lol! I'm a stomach sleeper, always have been.

Well I got my Intus results back, and it looks like I may be on the right path with my guesses so far... Not OSA, but UARS or similar airflow restriction.. They've reccomended a mouthpiece by the sounds of it, but equally APAP is surely likely to help also? I guess we'll find out Monday. Is a peak heart rate of 111BPM abnormal? That to me seems crazy during sleep? That's a light exercise heart rate to me lol. Here's the conclusion from the report:

"This study shows an AHI (number of apnoeas+hypopnoeas per hour in bed) of 1 event/hr.
This was increased in the supine position - 2 events/hr with 17.9% of the study spent supine and also
elevated when the patient was in REM - 2.4 events/hr.
Few of the respiratory events were associated oxygen desaturation. The ODI (oxygen desaturation
index – number of drops in oxygen saturation >4% per hour in bed) was 0.7 events/hr, with a mean
SpO2 of 96% and a minimum SpO2 of 93%, there was no suggestion of hypoventilation. The RDI was
15 event/hr and may be suggestive of upper airway flow limitation. The mean pulse rate was 55bpm,
with a maximum of 111bpm and a minimum of 40bpm.
Within the limits of this study the sleep architecture was normal. Sleep efficiency was good at 89%,
with 9 wake episodes during the night.
Heavy snoring was evident during the study, with 2% of snoring reaching above 45dB, and a mean
snoring level of 40dB.
There was no evidence of obstructive sleep apnoea. There was suggestion of upper airway flow
limitation and the patient may benefit from a mandibular advancement device."

Numbers from sleep report here:
https://www.scribd.com/document/3807681 ... eep-Report


In some respects that report seems to suggest to me my sleep is fine? (Based on that one night at least.) But then other parts of it (RDI, some dropping in oxygen, heart rate) suggest to me that actually there is evidently a problem?

What's everyones thoughts?

Heavy snoring itself can disturb our sleep. Cause lots of arousals or mini awakenings that we may or may not remember but trash the sleep architecture.

When you get your machine you aren't going to be able to rely on the AHI as much of a guide because your AHI is already minimal.
Instead you are going to have to rely more on your subjective feelings of how you feel and how you sleep.
The numbers aren't going to help much.

We have a few forum members with the UARS diagnosis and they have to rely on how they feel more than the numbers.
It's extremely hard to get around the mindset for wanting the numbers to help you out. Subjective feelings are much more work to evaluate.

Pugsy wrote: ↑

Fri Jun 01, 2018 4:22 pm

Heavy snoring itself can disturb our sleep. Cause lots of arousals or mini awakenings that we may or may not remember but trash the sleep architecture.

When you get your machine you aren't going to be able to rely on the AHI as much of a guide because your AHI is already minimal.
Instead you are going to have to rely more on your subjective feelings of how you feel and how you sleep.
The numbers aren't going to help much.

We have a few forum members with the UARS diagnosis and they have to rely on how they feel more than the numbers.
It's extremely hard to get around the mindset for wanting the numbers to help you out. Subjective feelings are much more work to evaluate.

My RDI of 15 with an AHI average of like 1-2... does that seem like enough of a problem, to really be a problem? As in, I seem to have almost all symptoms of sleep deprivation.. tiredness, unstable mood, poor concentration, poor memory, no sex drive etc. Is it likely that based on my results, that my sleep problem could be severe enough to cause me all this?

I'm happy to go by feel, at the end of the day, if I feel better with APAP I don't care what the number say haha! All i want right now is to feel human again. As i'm going to be using the Airsense 10 Auto For Her, I believe this actually allows you to track RERA... so this should be useful as far as numbers are concerned for UARS shouldn't it?

Ahh, I really hope this is the beginning of the end and I might have finally pinpointed the cause of all these problems!!

Have you had an ENT evaluation to see if there is a nasal restriction that can be corrected?

Pugsy wrote: ↑

Fri Jun 01, 2018 4:22 pm

Subjective feelings are much more work to evaluate.

+1

He should remember his baseline:

More fatigued, brain fog, sex drive has gone right down, just generally feeling bloody exhausted despite sleeping 8 hours a night. However if I have a night of sleeping say 6 hours or less, then its all amplified. .... But I couldn't for the life of me understand why I was so constantly fatigued. My whole quality of life has just gone downhill

Starting a journal immediately would be a good thing to do.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:58 pm

The mean pulse rate was 55bpm,
with a maximum of 111bpm and a minimum of 40bpm.

That's good. Don't worry about the max - you could have moved around in bed and caused it to go up that much.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:58 pm

They've reccomended a mouthpiece

Gramps and I both have custom made mandibular advancement devices (MADs). Neither one of us can tolerate them, plus they are not effective for us. I vote for sticking with your plan to work with CPAP.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:58 pm

Heavy snoring was evident during the study, with 2% of snoring reaching above 45dB, and a mean
snoring level of 40dB.

You definitely want to treat that. Over the years, vibrations from snoring damage the nerves that signal the airway muscles. Too much damage and the signals don't get through when you are sleeping = airway collapse/obstructive sleep apnea.

OkyDoky wrote: ↑

Fri Jun 01, 2018 4:33 pm

Have you had an ENT evaluation to see if there is a nasal restriction that can be corrected?

No not yet. I am going to book a doctors appointment next week, especially now as I have this report. As I mentioned previously, my local GPs have been absolutely useless so far, palming me off everytime I've asked for help. I'm probably going to change practice anyway. But I'll get an appointment ASAP, and take this report with me - as now they can hardly refuse to refer me to a specialist now I have actual hard data showing a problem. (Then again, I wouldn't put it past them.. grr, makes my blood boil lol.)

Hopefully the APAP will help me in the mean time.. All i want now is relief and to feel human again, even if it means sleeping with a machine for the rest of my life!! But if I can get a clearer diagnosis on the cause and if it's fixable, then I'd certainly be interested to look into that.

ChicagoGranny wrote: ↑

Fri Jun 01, 2018 4:35 pm

Pugsy wrote: ↑

Fri Jun 01, 2018 4:22 pm

Subjective feelings are much more work to evaluate.

+1

He should remember his baseline:

More fatigued, brain fog, sex drive has gone right down, just generally feeling bloody exhausted despite sleeping 8 hours a night. However if I have a night of sleeping say 6 hours or less, then its all amplified. .... But I couldn't for the life of me understand why I was so constantly fatigued. My whole quality of life has just gone downhill

Starting a journal immediately would be a good thing to do.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:58 pm

The mean pulse rate was 55bpm,
with a maximum of 111bpm and a minimum of 40bpm.

That's good. Don't worry about the max - you could have moved around in bed and caused it to go up that much.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:58 pm

They've reccomended a mouthpiece

Gramps and I both have custom made mandibular advancement devices (MADs). Neither one of us can tolerate them, plus they are not effective for us. I vote for sticking with your plan to work with CPAP.

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 3:58 pm

Heavy snoring was evident during the study, with 2% of snoring reaching above 45dB, and a mean
snoring level of 40dB.

You definitely want to treat that. Over the years, vibrations from snoring damage the nerves that signal the airway muscles. Too much damage and the signals don't get through when you are sleeping = airway collapse/obstructive sleep apnea.

Journalling is a great idea!! I will do that!

That snoring thing, I'm baffled by that. I've recorded myself for a few nights now, and I don't really snore. I also used the 'Snore Lab' app the night I did the study, and got a score of 3... So I'm not exactly sure if they've measured that snoring accurately. Honestly, if you listened to my sleep recordings, you'd recognise I make some very odd noises, but as far as snoring is concerned, I think most people would love to have someone as quiet as me vs what a lot of people have to put up with lol!

Snore lab said I was very quiet, and gave me a score of 3..

Or can snoring be regarded as 'heavy' without being loud..? Am I being stupid here?! lol!

canyouhearmeaya wrote: ↑

Fri Jun 01, 2018 4:29 pm

As i'm going to be using the Airsense 10 Auto For Her, I believe this actually allows you to track RERA... so this should be useful as far as numbers are concerned for UARS shouldn't it?

Maybe...remember anything it flags is going to be what happened and wasn't prevented. There is no way to know how many of anything is prevented. Also remember these machines can't tell if you are asleep or awake so they can't with 100% certainty flag RERAs like can be done in a sleep lab with a tech watching your air flow and sleep status to see if the air flow reduced and you woke up or not.
Instead they measure your air flow and see if it LOOKS like the air flow pattern of a person who wakes up after a flow reduction.
It's a far from perfectly accurate measurement tool since it can't tell for sure if you are awake or not.

RDI of 15 is scored similar to AHI in terms of severity.

https://www.soundsleephealth.com/blog/f ... versus-rdi

http://www.mysleepapneamd.com/what-is-sleep-apnea/rdi