[Symptoms] Possible sleep-onset central apnea. Desperate for help.

[scaredandtired]

Hello. 
I apologize if this is in the wrong place or you folks don't usually allow questions like this. I'm just simply desperate, tired and mostly scared.

I'm a 35 yo American male living in Japan. I have hc coverage here.

I had a tonsillectomy Aug. 17th. Last Monday my uvula and soft palate descended as part of the healing (I had large tonsils) and my uvula is resting on my tongue. My airway is now much smaller but air gets through. I'm considering UPPP if for nothing less than to get my uvula off of my tongue.

Right, so that was Monday. Tuesday I wake up in the night with starts multiple times. This happened the next night, and the next. Was having a great difficulty getting back to sleep. Went to Dr. Google and found this wonderful world. Started monitoring the events and they seem to be right as I'm drifting off. They've caused me stress and fear of sleeping which may have led to insomnia compounding my problems. I'm lucky if I'm getting 3 hrs. of sleep total in a night.

This is terrifying. There's no way my body can handle this! I am not getting any sleep! I'm so scared! All I want to do is sleep, even if it sucks!

I am having a home test sent to my place, once I do thav and send it back the doc will see me Oct 12th. It seems like an eternity. I may be dead from exhaustion by then.

My symptoms are breathing a fairly normal (not snort) breath in sharply before I drift off. Initially these brought me around with my heart racing but now they simply make me slightly more aware.

Doc looked at my heart today. Says it looks good. But he also said there's no physical obstruction. Well, maybe not but this starts up the same night my soft palate descends? Hmmm....

Anyway, I'm a wreck and just happy to have a group of pros to confer with. Does this sound like sleep-onset CSA? Wake Sleep Junk? OSA CSA mix?

I'm so scared of dying without sleep or dying in my sleep.

Anyone use remede? Have an idea of the cost?

Please help!

[eseedhouse]

I'm no doctor, but this sounds like an obstructive apnea that happens as your throat relaxes along with your other muscles in the process of dropping off to sleep. I think you may have some unrelated anxiety complicating things.

The good news is that this is treatable. Also you are unlikely to die from this experience even though it may definitely feel as if you are dying. I lived with that kind of thing for more than half a century, but not even once did it actually kill me.

I suggest you make an appointment for a proper sleep test and in the meantime stop worrying so much. Sleep apnea can kill you and it does need treatment but it does not, as a rule, kill you right away. If your sleep test shows you have sleep apnea get proper treatment and you will add many years to your life expectancy.

[scaredandtired]

Ed,

Thank you so much for the reply and sage advice.

I believe anxiety/stress are definitely playing a role. I'm awake now at 4am with more sleep than I've had in a week at once and even though I'm awake because of several events, it's still comforting to get some semblance of sleep thanks to a stress-relief medication my ENT subscribed.

I'm not usually one for panic, anxiety, etc. but this is extraordinarily unsettling. I worry about morbidity mainly because (until tonight) I'm not getting anything resembling sleep and there's only so much of that my body can physically and mentally take before having an adverse effect on my ticker.

Seeing this rapid onset of symptoms within 24-48 hrs of my soft palate & uvula descending seems to my unprofessional mind, more than just a coincidence. Do you think I would be a candidate for UPPP? I hear success rate is in the realm of 47％ but hell, if the two are linked eliminating the cause seems like common sense.

Since I'm coming out of drifting with a start and inhalation, not a snort suggesting blockcge, this sounds similar to what many across the internet describe as sleep-onset CSA. Not that I want it to be haha, just sounds somewhat similar. I do find it odd that I'd develop a nerve-related issue over the course of one night so I did some reading on chemoreceptors in our throats telling us when we do/don't need a breath. These seem to be linked to CSA-related events in some patients. Is it possible my soft-palate (which is indeed allowing airflow) is not allowing as much volume of airflow in or CO2 exhalation out thereby messing with my chemoreceptors and causing a kind of OSA-CSA double punch?

An at-home sleep test is on its way to my place now. Due to insurance here, I'll need to do that first to be a candidate for a sleep study. In the meantime I just have to grin and bear it but luckily my work place has been fully understanding and given me time off until I have a diagnosis and can get some appropriate treatment/surgery which has helped my mental state like you wouldn't believe.

Thank you all for your time. So appreciated in this very trying time for my family.

[PoolQ]

sleep apnea does not happen quickly, it builds up over time. My very unprofessional guess is that your airway is way different then it ever has been in the past and it is freaking you out (I understand completely). Messing with someone ability to breathe is a scary thing, I KNOW. Freaks me out too. Heal and do your best, with meds if needed, to relax so you can actually heal.

[scaredandtired]

PoolQ, I get that you are not a prof. but as I wait for the at-home test your words are such a great comfort.

So many tears and breakdowns this week pleading with myself in the wee hours before daybreak to just *sleep*. This has been the most terrifying week of my life.

My symptoms seem identical to the case of YouTube poster 'bb mama' so I've been resigning myself to a CSA lifestyle similar to hers with multiple sleepless nights but you've given me some hope.

Waiting for that test!

[Sleeprider]

UPPP has very mixed results, and is something to avoid if possible. If you can obtain access to a CPAP machine, you will quickly know if it is going to work for you, and just order one for yourself. It sounds like you have coverage, and so the home sleep study should give you an idea of the presence and severity of apnea. Your symptoms sound like obstructive apnea, and are not unlike what I experience if I try to sleep without the CPAP machine.

If you find yourself in a position where CPAP is indicated, I'd like to suggest you start looking to source a Resmed Airsense 10 Autoset. It is a very reliable machine that gives very good data so you can manage your care and self-titrate. It is also one of the most responsive auto CPAP machines on the market. Resmed sells the Autoset internationally, but I don't know of its availability or cost in Japan. FYI Supplier #2 ships internationally and offers this machine new for $749 plus shipping for international orders, and gently used at $489. Do not order the fixed pressure CPAP Elite model since you need the Autoset for self-titration. I'm pretty sure you want a U.S. sourced machine since you will likely be returning in the future and would benefit from an English U.S. version. You could call or email Supplier #2 to verify what will be needed, and this may save you time later. Inquire about the "New Factory Sealed ResMed S10 AirSense AutoSet with EPR and Integrated Heated Humidifier". You will need a mask, and the easiest to use is the nasal pillows. It is smaller and lighter than a full face and a good way to start. The Resmed Airfit P10 is very popular on the forum and what I use.

[scaredandtired]

Sleeprider, 

Thank you for more invaluable info. I've archived your advice. 

Regarding UPPP, I'm not rallying for more surgery but here's my 'justification' for having a desire to pursue it. I'm not offering these to defy advice, I'm trying to see if together you think they validate my decision.

First my uvula is solidly resting on my tongue at all times. Post-surgery it was lightly touching it but since my soft palate descended last week it is full-on sitting on it at rest and when I talk it is constantly touching/slapping it. Even when the uvula was only lightly touching I considered UPPP to relieve quality of life stress. (Then the sleep issues happened)

Second, my soft palate descending has made breathing through my mouth and swallowing saliva somewhat more laborious than it was before. It's not impossible but it does feel like I am being choked as compared to pre-op.

Third, I accept that our bodies are complex and that sometimes, these things 'just happen' but after 35 years I find it hard to believe that my soft palate descends and the very next night I'm suffering with these issues out of the blue.

My greatest fear is indeed that some 'wiring' has changed and surgery or no I'll be left with this issue but on the plus side I'd be able to talk without my uvula on my tongue and breathe easily (or at least with more ease than now) through my mouth.

Do these sound like valid reasons? My ability to speak (especially as an elementary school teacher) is very important so apnea aside, being able to speak unimpeded again would be amazing.

To be frank, before I knew about OSA and CSA I was already researching UPPP and other options such as sphincter enlargement and uvulopalatal flap but I don't believe those are an option here, sadly.

[sheepless]

sounds like you've already looked into alternate means but fwiw while I can't name them offhand I'm pretty sure there are methods available to stiffen up the palate which might conceivably raise your uvula enough to avoid having to lop it off. it's been years since I looked into alternate therapies but back then insurance wouldn't cover them. still, it might be worth looking into given all the horror stories out there regarding the consequences of removing the uvula. my vague recollection of these palate stiffeners includes radio frequencies and implanted rods of some sort. probably marketed as anti-snoring techniques or devices.

[scaredandtired]

Sheepless,

Thank you for your reply.

In my sleepless and anxiety-ridden nights spent searching for every method available, I came across a soft-palate treatment of some sort where the patient described the ENT injecting the soft palate with a solution causing it to blister and then tighten up. That actually sounded pretty good but I could only find that one instance so I don't know if I can rely on someone in Japan being able to realistically perform that. I don't even know if it's possible to find the 'standard' alternatives here such as uvulopalatal flap or sphincter enlargement. 

I spoke with a friend who is a speech therapist in the States and despite my hesitance, she suggested UPPP under the pretext that, simply, it will not impede muscle function as related to swallowing. That's pretty compelling I must say since I swallow, a lot, haha.

I raised the point of flow of liquid into the nose. She said that if the surgery is done properly, the uvula should not be fully removed and the passageway should be covered. So, that's something I'll need to discuss with the doc if/when the time comes. In looking around the net I've seen both success and horror stories. While I'd love to tighten up the soft palate by other means and raise it to where it used to be, I'm not sure that's feasible via insurance over here. It doesn't help that UPPP was developed by a Japanese doc so *of course* it's the popular (only?) option here.

Any source for a reliable database of UPPP patient reactions or even past threads here? The more info the better I feel.

All wonderful advice my friends. Thank you very much.

[scaredandtired]

Sorry for double post, couldn't edit my previous one.

Found that injection treatment. It's called Snoreplasty. Any experience with that? Would it sufficiemtly raise the soft palate?

Edit: never mind. Reading up on it, sounds like it stiffens the soft palate but wouldn't raise it which is what I need.