UARS Insomnia

[migraine-]

Hi,

Bit of background first.

In October I had a cold and developed insomnia due to a feeling of snoring/a change in my breathing right at the point I was dropping off to sleep (which would wake me up). I have snored for many years and talking to the fiance there was some evidence of OSA from what she was seeing at night. It was happening over and over and over again, and I was struggling to fall asleep before the middle hours of the morning, if at all. This feeling is always in the same place, right at the back of my nasal passage where it joins into the throat.

My researched led me to thinking I have UARS. I saw the GP and have ENT and sleep clinic appointments in the pipeline (NHS). She also felt I may have some polyps so I've been taking a steroid spray ever since.

Given my desperation, in the meantime I paid for a home sleep study with Intus healthcare - which showed moderate OSA - and bought a CPAP.

After getting over the initial sleep deprivation and getting used to the CPAP, I was doing well. I did have to use Zopiclone at times when I was especially struggling to get off, but otherwise good.

My work schedule requires that I intermittently do nightshifts and I had my first set last week. I actually managed to sleep quite well during the day, but since coming off nights my sleep is catastrophic. I also have a minor cold and some post-nasal drip as a result.

Without the CPAP, I have what I previously described where I am woken up endlessly at the point of dropping off. However even on it I am now struggling with what feel like respiratory effort arousals as I'm about to fall asleep. I have the Respironics Dreamstation with the humidifier and have both a nasal pillow and full face mask.

What feels like is happening is that the extra mucous is plugging what is already a small calibre airway at that point, which is then not overcome by the CPAP. I've tried every different setting I can think to try, drinking loads to thin the mucous, nasal irrigation, mouth breathing to bypass the problem area (I automatically switch to nose breathing the second I stop concentrating on it) and I'm at my wits end. I've fallen asleep for maybe an hour around 5-6am for a few nights and the last two nights I haven't slept at all. It's literally like sleep deprivation torture. Quite frankly I feel suicidal because there just feels like no escape from being awake.

I don't really know what I'm hoping for typing all this out - it's somewhat cathartic at least I guess - but any ideas? Anyone suffer from similar?

[slowriter]

I'm getting a bit lost in the details. Have you tried the Zopiclone to address the insomnia while you get over the cold, and adjusted to new sleep schedule?

[migraine-]

Sorry I took a long time to reply, things got somewhat desperate last few days.

Yes I am trying the zopiclone again. Last night I took it and tried to go to sleep with my mask on, failed and threw it off in frustration.

I did then manage to fall asleep with it off some time later.

Doing more internet searching today it seems I've finally found others experiencing what I am, which is transitional apnea; just as I'm dropping off, I start breathing deeply or have a little snore and wake myself up. Scarily, absolutely none of those threads seem to end in the people finding any answers.

[migraine-]

Well I've been convinced since all this started there's a physical obstruction in the back of my nasal airway which is at the route of the problem. Having lost patience waiting for the NHS (and the will to live) I've booked a private ENT appointment which is on Thursday.

If that comes back to say there's nothing I honestly don't know what I'll do.

[Jas_williams]

Well I've been convinced since all this started there's a physical obstruction in the back of my nasal airway which is at the route of the problem. Having lost patience waiting for the NHS (and the will to live) I've booked a private ENT appointment which is on Thursday.

If that comes back to say there's nothing I honestly don't know what I'll do.

i hope you get some good feedback from the ENT.


Have you downloaded OSCAR to read your data from your CPAP machine ?
What machine did You purchase


Look at your data may help us see what’s going on.

[migraine-]

Saw the ENT today.

I have a narrow nasopharyngeal airway but nothing specific like a polyp causing problems. Moderately large tonsils. Not able to explain why this suddenly all started keeping me awake 4 months ago, but it's definitely the area causing the apneas.

He was willing to do surgery if I wanted, but was very clear it'd be a highly unpleasant recovery with at best 60-70% chance of cure. Would involve tonsillectomy, uvulectomy, and I think UPPP. Reading around online I'm pretty reluctant but at the same time I can't live like this.

The issue is entirely with sleep onset as far as I'm concerned. Without the CPAP on, without fail I will wake myself up over and over and over again with snoring or increased respiratory effort at sleep onset. Like hundreds of times until I maybe somehow make it through that barrier at 5am and drop off.

With CPAP on, I had a spell at first after I got back into some kind of sleep pattern where I was sleeping well with it. Then I did a set of nights and picked up another cold and all of a sudden I'm having onset arousals even with the CPAP on. Time after time, hour after hour. I had two days last week where I slept less than an hour and the rest of the week wasn't much better.

It's torture. I can't spend the rest of my life in fear of a cold meaning I don't sleep for a week. Honestly on Thursday last week if I hadn't had other people to think about, I'd have killed myself, no questions asked.

Given I know it's nasopharynx that is the problem (apparently my oropharynx is beautifully open) I'm wondering whether trying to force myself to mouth breathe somehow is worth trying - normally I automatically switch to nose breathing as soon as I stop thinking about it. I don't know. I have no idea what to do any more.

My machine was second hand and didn't have an SD card in it I have now realised, so have bought one. It's a phillips respironics dreamstation APAP. My AHI when I fall asleep on it is always <1.

[migraine-]

Lying here awake at 4am again. Honestly just wish I was dead.

[jimbud]

Damn, if I felt that way I would get the surgery.

I have had gout so bad that if I thought it would have cured it I would have blown my foot off with a shotgun. Seriously.
You need to take action.
No one will do it for you.
Get this fixed. I do not know how the surgery could be worse.
Be proactive.
Take your life back.

JPB

[slowriter]

I think for this forum, you really need to post some OSCAR data screenshots, since it's possible there's something they might suggest that might help with your settings.

I know nothing about the UK healthcare system, so am not really sure what to recommend, but I think you need to talk to a sleep expert beyond an ENT if possible. You're basically not sleeping and are depressed and suicidal. You need help.

[Jas_williams]

You need to talk to your Dr you may need medication to help with the insomnia ring up and get an appointment now

[migraine-]

Had a phone consultation with GP last night and decided to try some mirtazapine. Took the first dose last night (15mg since lower doses are more sedating). Slept amazingly but hell waking up was like coming round from anaesthetic; not bothered by that though.

Had the SD card in the machine for the first time last night as well so will have a look at that when I get home, although I doubt a marching band through the bedroom could have caused an arousal last night.

[SnoringInOregon]

You need to get a proper sleep test.

I had the exact same initial symptoms as you:

1) snoring, many years
2) finding myself waking up from snoring just at the point I was drifting off to sleep

I went to an ENT and she was at first skeptical that I had OSA. But she sent me off to the sleep clinic and she was astonished at how bad the apnea was.

That "change in your breathing" just as you are falling asleep is probably nothing more nothing less than plain old obstructive sleep apnea. It doesn't just occur as you are falling asleep. It is something that will persist thru the night. It will probably get worse during REM sleep. You are wrong if you think this is something that only happens just as you are falling asleep.

As others have said, post some SleepyHead or OSCAR reports.

UARS is really just a form of OSA and you probably have that. But a CPAP machine should help.

My UARS manifests itself in RERAs at night, which is what you describe you have. My Dreamstation does a good job of treating plain-vanilla OSA, my AHI is rarely above 1.0 and is often 0.0. However, my RERA can hit 7.0 or higher on a bad night and the Dreamstation doesn't do a great job with that.

There are lots of threads here and on apneaboard about the nuances of UARS and I'm not qualified to opine further.

Note that in order to get my AHI low I had to kick my Dreamstation min pressure up to 10.0. It doesn't do a very good job of quickly responding to obstructive apnea or hypopnea events. Increasing the pressure also significantly improved my RERA.

Edit: you should definitely have people here give you feedback on your charts and do a lot of tweaking to the settings on your Dreamstation before you decide to do something as drastic as surgery.

[migraine-]

I have had a sleep test. It wasn't one with an EEG becaus it was at home, but it was one of the Intus watchpat ones. The ENT was initially dismissive of it until we worked out it was done with a watchpat which turns out to be the same device he uses for his.

It showed mild to moderate apnea with I think 16AHI and 26RDI.

I have no doubt I have apnea, but I found it strange that I am sure I've had it years but it only suddenly stopped me falling asleep.

The sleep clinic I saw want to repeat the sleep test at home and then likely bring me in for an in-hospital one with EEG and everything to try and optimise the therapy as much as possible.

When I say "just as I'm falling asleep" I don't mean "only as I'm falling asleep", I can s and how that's ambiguous phrasing. I'm sure it happens through the night, but that's something I can handle. Being prevented from initiating sleep is not.

[slowriter]

UARS is really just a form of OSA and you probably have that.

This is debatable.

Both UARS and OSA are types of sleep-related breathing disorders (SBDs). But they have different mechanisms of arousal, and so sleep fragmentation.

At least, that's how I think about it.

[slowriter]

The sleep clinic I saw want to repeat the sleep test at home and then likely bring me in for an in-hospital one with EEG and everything to try and optimise the therapy as much as possible.

Good. Do this.

Also, ask them if they can do a "split study" at the same time, where they put you on a machine part of the night, and where during that period they also see whether a bilevel better handles your events.

If you have UARS, you will have lots of RERAs, and if that's the case, you want a machine, and settings, that will eliminate those. In my case, a CPAP didn't work.