Ask Dr./Sleep Specialist Internet

[usernamenumber]

I've had a CPAP for about a year now, and I've yet to sleep through the night with it on. Every time I try a new mask or setting I hope it's going to make the kind of life-changing difference I keep hearing about, but so far I really can't say I notice a difference between the nights when I use it and those when I don't.

My entire life I've been tired more often than not, and I'm sick of it. I've been trying to get more serious about finding a solution lately, following up with my doctor more frequently, but at this point I'm looking for whatever resources I can find (within reason).

Now, I know better than to go to social media for Real Medical Advice, but then again I also know a lot of y'all also use CPAPs, so maybe someone out there knows a specialist or other solution I might do well to look into further? Maybe some of you have even had something like the experiences I'll describe next, and found a way to deal with them?

Here's what I've tried so far...

• CPAP with full face mask: The problem with taking the thing off in my sleep is that I can only be so sure of the reason(s). I recall frequently having the sensation that the CPAP has started to make it harder to breathe, rather than easier. I specifically recall a sensation I can only describe as there not being "enough air in my air", like I'm suddenly not getting enough oxygen. I would suspect that maybe the mask isn't venting my exhalations well enough and there's CO₂ building up, but really I have no idea.
  
  Also, silly as it may sound, rare is the night when my nose doesn't itch, and when you're asleep and your nose itches and something is stopping you from scratching that itch, your thought process doesn't get much more complicated than "ungh... uncomfortable thing... make go 'way now...".
  


• CPAP with nasal mask, and CPAP with nasal pillows mask: At first I was worried that a nasal mask wouldn't work for me because at least half of my nose is almost always stuffy, and my ENT doc says I have "severe septal deviation" (which is totally the name of a metal band I'm going to form), but I've found that that part actually works ok. The problem is... weirder.
  
  Every night, just as I'm about to actually lose consciousness, something stops me from breathing in-- there have been times when I've awakened to a sensation that feels like "central" apnea, as opposed to obstructive apnea. In other words nothing is blocking my airway, my body's just gotten so relaxed that my brain has, just for a bit, forgotten to remind my lungs to breathe. I know that during my initial sleep studies they noted both central and obstructive apneas, so I am prone to this, but the kind of CPAP I'm using (the super fancy "adaptive servo ventilation" kind for those playing along at home) is supposed to prevent central apneas.
  
  So ok, maybe I'm just making this up and it's actually obstructive; point is, at some point some kind of apnea happens despite the CPAP, and this causes problems. When the CPAP tries to make me inhale pressure builds up in, but instead of forcing my airway open, my lips prove to be the weaker seal and I start... blowing rasberries every few seconds.
  
  This is very embarrassing. And annoying. And it wakes me up. Off goes the mask, and I take my chances sleeping sans mechanical assistance. Again.
  


• Tongue Suppression Device (TSD): This one's weird, kind of a cross between a pacifier and bondage gear. It uses suction to grab onto my tongue so that I sleep with it effectively sticking out, the idea being that this prevents my tongue from drifting back and blocking my airway while I sleep. Does it work? Well, I've managed to get through the night with it once or twice, and... maybe, I think? It's really hard to quantify the differences, especially with my other sleep issues going on (e.g. this morning, when I woke up after about 6 hours of sleep, having slept 4ish the night before, completely hyper-- not awake per se, I would love to go back to sleep, just completely full of nervous energy, like a sugar high with no cause I can think of).
  
  Even if the TSD is effective it's hard to stick with because... well you try and sleep with someone pulling on your tongue all night. :\

So... yeah. That's where I'm at. I try sleeping on my side instead of my back, and at least start most nights with one of the above devices. I experimented once with using the nasal cpap and TSD together, which they're not designed to do, but if the problem with the nasal cpap is obstructive apnea after all... warrants further investigation I guess, but gah, there's only so much a fella can be expected to strap to his head in a night. Anyway, I digress.

Anyone have any familiarity with the above? Know a miracle worker who listened well and worked with you to find a creative solution to your own problems? Do tell!

Comments

[heiligekuh.livejournal.com]

Jodi had her tonsils out last summer. Did a pretty good job of clearing up her (obstructive?) apnea. Also, totally horrific recovery process. YMMV

[valadil.livejournal.com]

I skipped the CPAP and went straight to a tonsilectomy + deviated septum repair. There were reasons for doing that besides sleep though.

[usernamenumber.livejournal.com]

How much of a difference did it make?

[valadil.livejournal.com]

It definitely helped. Once I was all healed up, I was only sleeping for ~4 hours a night but waking up more rested than I was used to. I still have nights where sleep doesn't happen but they aren't as often and the rest of the nights I feel more rested.

[turtletoturtle]

I had two major problems with adjusting, both of which have been resolved to some extent. The first was that my pressure was set two clicks too high, which was annoying (especially when I figured out that while the RT is *supposed* to change it, there arent any settings *preventing* me from changing it).

The second is that I pretty much cannot tolerate it without *unheated* humidity. I feel like I'm just simply not getting enough air. This is apparently not a setting that's available on all machines -- basically, I had to get a variable-heat machine (which uses a special heated tube), and then set the temperature to a few degrees cooler than room air.

So that's my suggestion, for which ymmv -- I haven't tried many different masks because I'm a stomach-sleeping mouth-breather, so once I found a full-face that worked even a little, I stopped looking. I hear there are a variety of good dental appliances these days, but haven't looked into it. It also, frankly, takes a lot of willpower to wake up and not take it off -- even with it working properly, it's kind of a suboptimal sleeping situation.

[mindways]

Lovely timing - I *just* got home from my first-ever sleep study. :)

I can't remember the name of the device, but there's another form of helpful orthodontia besides the TSD. The TSD pulls your tongue out; the one I'm thinking of actually moves your entire lower jaw forward to help keep your airway from being obstructed.

It comes in two models:
1. The adjustable, custom-fitted-at-a-doctor's-office, medical-grade version, which costs around $3,000 but is covered by some insurances (if you have a diagnosis of obstructive sleep apnea);
2. The "fit-it-yourself" mouthguard-style version, which you can buy for $55 over the internet.

I tried #2 and found that it helped, but (a) the material was a little too soft to keep my lower jaw in place without introducing torque, and (b) it aggravated the hell out of my (normally dormant) TMJ issues.

I got the sleep study done as part of pursuing #1, which I hope will not aggravate my TMJ like #2 did.

-----

So far as CPAP masks go, I have exactly last night's experience with them, so take the following with that in mind.

I found that they did make it harder for me to breathe in certain ways:
* Definitely: the airflow triggered minor sinus congestion.
* Maybe: Made it slightly harder to exhale?
* Don't know if I was imagining it: Sometimes the air felt... slightly stale? But it was always transient.

I had the itchy-nose thing, too, and ARGH. I got through it by focusing on falling asleep, but I could totally imagine that in time I'd self-train to take the mask off. (I did that with my headgear when I had braces.)

But I'm hoping to go with the dental solution rather than the air-blowing one.

[baron-saturday.livejournal.com]

Hey,

Yeah... You're playing my song. I tried the CPAP every which way and like you, I never achieved the glorious brass ring of decent sleep. Sometimes it actually made things worse.

One the advice of a Nurse Practitioner I started looking into (and eventually had) Uvulopalatopharygnoplasty (blessedly abbreviated to UPPP). The surgeries were a bitch, the recovery was worse and there are a few moderately troubling long term side effects which I would rather not have.

But the benefits are real. Has it changed my life? Yes. Have I entered a golden age of perfect sleep? No. External evidence reports a world of difference, friends say that I am more rested looking, more alert, and much less scary when I sleep. I also snore much less and much more quietly.

I still haven't really gotten the hang of sleeping, it may take a few years to counteract decades of somnolent suffocation.

So, to sum up, I can't recommend paying a masked man to laser out the inside of your head and throatt, but it is much further along the road that CPAP ever got me.

[usernamenumber.livejournal.com]

Could you tell me more about the side effects of the UPPP surgery? One thing that has me particularly nervous is doing something that might affect my singing voice. :(

[baron-saturday.livejournal.com]

I had to relearn how to make the 'chhhh' sound in many German or Yiddish words. I find spicy food much more difficult to tolerate, I more frequently choke on liquids or just my own saliva, when I'm tired my sinuses ache in a very strange and unpleasant manner. I am still relearning how to project my voice like I used to. I have lost some of my voices (or perhaps I have not relearned them yet).

I am not a singer so I can't speak to that, but it's certainly something I would be concerned about.

[lisefrac.livejournal.com]

My mom had UPPP. She had a very long recovery time, and they warned her that she might experience permanent voice alteration.

The worst part was: it's not even guaranteed to fix anything. And in her case, it did not.

[usernamenumber.livejournal.com]

...ok, so I think that's out then. Thanks!

[lisefrac.livejournal.com]

It sounds like you have a very different type of sleep apnea than I do--mine is all obstructive, and so that's the only thing I can speak to. But I do pretty well with the combination of a nasal mask and a chin strap--by which I mean, I have good compliance and I feel I get benefit from it (i.e. not risking falling asleep at the wheel). I don't notice too much of a difference if I miss one night of CPAP sleep, but the fatigue is insidious, and creeps up on me, if I go much longer.

The thing about "blowing raspberries" and the like... makes it sound like the pressure is set too high, to me. I mean, if that were happening to me that's what I'd probably say to my doctor. And breathing against the pressure gradient can be uncomfortable, in those circumstances.

A couple of other questions:

Do you have an autoset machine? I mean, does your machine vary the pressure automatically based on how well it thinks you're breathing?

And do you have a ramp? It usually takes me 30 minutes to fall asleep, and I don't like the full pressure blowing on me the whole time, so I set about a 30 minute ramp so it doesn't keep me from falling asleep.

[usernamenumber.livejournal.com]

My old one, which I never used with a nasal mask, had a ramp. The new one is supposed to auto-adjust, which has me at a loss for how to address the pressure issue.

[lisefrac.livejournal.com]

Hm, that's annoying. Mine is autoset, but it also has a ramp: http://www.resmed.com/us/products/s9_escape_auto/s9-escape-auto.html?nc=patients

With an autoset the max pressure can be modified, too, keep in mind. Mine is set to vary between 4-12 cm/H2O, if I recall correctly. It usually hovers around 8, from the data I saw.

When I was feeling recently like I wasn't getting the most restful sleep, I talked to my doctor, who said he could raise the range up to 13, but then I might have problems with my mouth popping open, like you describe. He suggested I try a chin strap to keep my mouth closed when I sleep. I was surprised, but it actually seems to have helped. The worst side effect is that I seem to drool a lot in my sleep as a result :)

Not sure this would work for you, though... I'm not sure I'm being very helpful.

Is there any chance some of the symptoms you're experiencing could be anxiety-related? Not to undermine what you're reporting, just that I know that sometimes I get tetchy about my breathing in similar ways as part of my anxiety symptoms.

[vortexofchaos.livejournal.com]

I have a full face mask, and an occasionally itchy nose, but that's usually when I first try to sleep. Now that I have the CPAP, it makes my sleep much easier and much better - so I don't wake in the middle of the night. My machine is programmable, and changes things as appropriate, so I haven't had any issues with that, either. Perhaps a "smarter" machine might help?

When I started having problems with congestion and a stuffy nose, my doctor suggested I just take a dose of OTC Benadryl before bed. Not only does it help clear things up, it also makes me sleepy, so I doze off faster.

I am doing much better as a result.

[ryca.livejournal.com]

I did my sleep study years and years ago, and only tried the CPAP once - hated it so much. I can't remember anything about my diagnosis other than "yes, apnea".

I've found that when I use the breathe-right nasal strips (extra sticky bandaids with springy strips in them that seem to widen the nasal passages) I sleep much better. I also wake up without my typical headache (34 years old, just learning that daily-ish headaches are somewhat atypical according to lots of people). I've also always woken up with congestion on the right side of my head (I sleep on my left side), and that's improved, too.

There are other reasons for a certain degree of overall improved well-being in my life (migraine medication being one of the biggest) but I think that the strips are a big part of my waking up feeling rested. No idea if they'd do you any good whatsoever, but given that you can get them at the drugstore for a couple of bucks and try them with approximately zero effort, it might be worth it.

[sprrwhwk.livejournal.com]

If your nose is getting stuffy at night, consider allergy meds. A cheap prescription to generic Flonase, which I take before bed every night, was another part of the puzzle for me, once I had the CPAP. (And it's being prescribed for me by my sleep doctor. Who are you seeing? I've been going to Sleep HealthCenters in Brighton and like them a lot.) Also consider pillow covers and once-a-week sheet-washing and generally reducing dust and other allergens around you when you sleep.