HELP: Sudden drastic worsening of Sleep Apnea - Can't sleep at all, CPAP completely u

[Unkikonki]

Hi everyone. I'm desperate for help. I haven't been able to sleep at all during the last 48 hours and I'm starting to fear the issue won't resolve any soon.

I have obstructive sleep apnea and I've been on ASV therapy for 6 months with great success. Everything was going great until I caught Covid for the first time 6 weeks ago. Suddenly, I wasn't able to fall asleep due to my nasal breathing becoming severally impaired. It felt as if something around my upper airway —maybe the soft palate–, blocked the airway as I dozed off. My breathing would slow down until it was too weak and would wake me up before I could start falling asleep. My nose however was completely clear. This issue lasted a couple of days until I managed to sort it out by switching from a nasal mask to a nasal pillow. Things got progressively better from there on.

However, fast forward 6 weeks, and the same issue re-emerged, this time with even greater severity to the point that my ASV machine is now completely useless and won't help me sleep at all, even after setting the pressure to its maximum. The difficulty breathing is most noticeable when exhaling.

I am not sick, and the only thing I can think of that may have triggered the blockage this time is an aerobic session of easy running on the treadmill. During the run, I was very focused in breathing deeply through the soft palate. I am not sure if breathing this way may have caused swelling in that area.

Even while I'm awake I can feel something around my soft palate, it makes me want to swallow.

Has anyone experienced anything remotely similar? I don't know what to do. I have an appointment with an ENT on 11th November but I can't wait that long, I need a solution right now.

Things I've tried so far without success:

- Sleeping upright
- Mandibular advancement device + ASV
- Steroid Nasal Spray
- Ibuprofen

[Old Steve]

You should post some OSCAR charts so I or someone else can perhaps be of help to you.

[SarcasticDave94]

Isn't that a bit drastic to be on an ASV for Obstructive Apnea treatment? The ASV will help, of course, but its main purpose is Central Apnea treatment.

We can try setting edits to help after seeing an OSCAR chart. However, I'm no expert at this that you describe, but it sounds somewhat like palatial prolapse.

[Unkikonki]

Isn't that a bit drastic to be on an ASV for Obstructive Apnea treatment? The ASV will help, of course, but its main purpose is Central Apnea treatment.

We can try setting edits to help after seeing an OSCAR chart. However, I'm no expert at this that you describe, but it sounds somewhat like palatial prolapse.

I tried CPAP for 6 months but the treatment-emergent centrals never went away and they were destroying my therapy. ASV has been a complete success.

I am not sure how OSCAR data could help considering I can't sleep at all but there it goes. Last night I managed to get some sleep thanks to a sleeping pill (zopiclone).

I believe you are right. It seems to be palatial prolapse. The question is what could've caused it get so bad so fast? Before Covid my therapy was working wonders. Even after Covid things seemed to have gone back to normal. Then, suddenly, I couldn't even fall asleep.

If I try to sleep without my mask, I can notice how shallow and weak my breathing becomes as I relax and try to enter sleep. Something is causing a lot of resistance and I suspect it is my palate. Increasing the pressure doesn't help, no matter how high I set it.


LAST NIGHT - I MANAGED TO SLEEP



NIGHT BEFORE - NO SLEEP AT ALL

[SkySleep]

Suddenly, I wasn't able to fall asleep due to my nasal breathing becoming severally impaired. It felt as if something around my upper airway —maybe the soft palate–, blocked the airway as I dozed off. My breathing would slow down until it was too weak and would wake me up before I could start falling asleep. 

This is an exact description of what happened to me when I was recovering from COVID. Supplemental oxygen allowed me to breathe well enough to sleep. I didn't need it after a few days; perhaps you will continue to need it.

My need for oxygen was well over a year before I got diagnosed with sleep apnea and started with a CPAP machine. I had a lot of trouble sleeping with the mask. (I'm at 7600 feet.) But, since I still had the oxygen concentrator, I connected it to the CPAP machine and that allowed me to sleep with the mask on. Now that I have gotten used to the mask, I no longer need the oxygen. Call it training.

Anyway, I'm not a doctor and, even if I were, I wouldn't be your doctor. Your situation sounds very serious. I hope you're not substituting advice from strangers on an internet forum for medical care.

[Unkikonki]

This is an exact description of what happened to me when I was recovering from COVID. Supplemental oxygen allowed me to breathe well enough to sleep. I didn't need it after a few days; perhaps you will continue to need it.

My need for oxygen was well over a year before I got diagnosed with sleep apnea and started with a CPAP machine. I had a lot of trouble sleeping with the mask. (I'm at 7600 feet.) But, since I still had the oxygen concentrator, I connected it to the CPAP machine and that allowed me to sleep with the mask on. Now that I have gotten used to the mask, I no longer need the oxygen. Call it training.

Anyway, I'm not a doctor and, even if I were, I wouldn't be your doctor. Your situation sounds very serious. I hope you're not substituting advice from strangers on an internet forum for medical care.

Hi SkySleep, thanks for sharing. I'll be headed towards the hospital soon, see if there's anything they can do.

Let me see if I understand. If supplemental oxygen was the solution, then what was the issue? If my theory of soft tissue almost fully blocking my airway is correct, I can't see how supplemental oxygen would help. Would you mind elaborating, please?

[SarcasticDave94]

Use of oxygen may not be an aspect that is generally a one size fits all suggested necessity. I think SkySleep may have some Central component and lives at high elevation. In this particular case oxygen might be helpful. However, with implied PP, extra oxygen probably does little.

[SkySleep]

In my case I wouldn't say that supplemental oxygen was the solution, only that it allowed me to sleep while recovering from COVID and then, much later, it allowed me to get used to sleeping with my mask. Your case may be, and probably is, entirely different.

[Dormeo]

I'm glad to hear you're headed to the hospital. You have a fairly urgent need for an upper airway exam. Let us know the results, would you?

[Unkikonki]

I'm glad to hear you're headed to the hospital.  You  have a fairly urgent need for an upper airway exam.  Let us know the results, would you?

The results were just as I expected: a waste of time. They don't take this sort of issues seriously. Best they can do is refer me to an ENT which will take months via the public system. So, I have no choice but to stick to the private system.

Fortunately, taking a sleeping pill (zopiclone) has actually helped. I'm not getting the best sleep, but at least I manage to get around 3 or 4 hours of sleep which is definitely much better than no sleep at all.

I have an appointment with an ENT on 11th November. Tomorrow Monday I will call every single sleep apnea surgeon in my city and see if I can find earlier availability. I'm going to try to push for a DISE (drug-induced sleep endoscopy) although apparently no professionals around here do that, I think they are way behind in sleep apnea diagnosis methods and treatment options. I live in Auckland, New Zealand by the way, a country where good medical professionals are scarce, in part due to the staff shortage, but also because the best ones move to Australia for better money.

I always suspected my soft palate was the main culprit behind my sleep apnea, I can feel something bulgy at the upper back of my throat even when I'm awake, I feel it when I speak and when I swallow (No, I don't think it is something else like a cyst or a nodule). Still, it truly is a mystery what could've caused such a sudden worsening of symptoms. Prior to Covid, I was doing fantastic. I'd reached a point that I considered sustainable with my ASV therapy. Even after Covid things seemed to have returned to normal only to suddenly get even worse. Although some further studies such as DISE would be ideal to confirm the diagnosis, I'm willing to take a gamble and go for soft tissue surgery removal (modified UPPP) or pillar implants based on my gut feeling. I really think I have no other choice having reached this point.

Things I have tried so far without success:

- CPAP mode
- Multiple pressure settings, from the lowest to the highest
- Positional therapy (upright and on stomach)
- Forced mouth breathing (not sure why this didn't work since the soft palate shouldn't influence mouth breathing as far as I'm concerned but it could be that I'm just not used to mouth breathing at all)

Things that have worked to some extent:

- Sleeping pill (zopiclone. Half a dose).
- Bongo RX (EPAP device). I tried this last night. I started the night on ASV + zopiclone. After sleeping for around 4 hours, I woke up and tried the Bongo RX instead. It was very uncomfortable but I did manage to get some sleep. Still, it felt much more fragmented than on ASV. I don't think I will try it again tonight.

For the time being, I will stick to usual ASV settings + zopiclone.