One year in and I still feel horrible

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

One year in and I still feel horrible

Post by drfaust » Sat Jan 27, 2018 9:30 pm

I posted updates after 3 and 6 months on CPAP, when I was still feeling terrible, and I was told to keep with it.

I'm back again. It's been a full year of near 100% compliance, and I have absolutely miserable sleep, I wake up feeling like I've been punched in the face, and my ESS is around 14. I sleep with a Dreamwear nasal mask (under the nose), and a chin strap. I talk a lot in my sleep (almost non-stop most nights according to my partner), though, and the air gushing out of my mouth when I talk wakes me up constantly. And when I'm not talking, the CPAP often blows my mouth open, even with the chin strap. I am not a mouth breather when no mask is on my face -- it's only with the CPAP that my mouth comes open.

I've tried three different FFMs, and I cannot tolerate them. I have yet to find one that doesn't have large leaks that wake me up, and I wake up constantly having to remove the mask to scratch my face underneath.

I spend most nights hovering between what I can only presume is stage 1 and 2 sleep. I'm quasi-aware of my surroundings, but still asleep and don't have control over my body. I frequently have vivid dreams (nightmares) that I'm being suffocated or having someone vacuum out my guts through my mouth (this is when the sensation of air gushing out of my mouth intrudes into my dreams). I had nightmare issues for years before CPAP, so this is nothing new, but now the nightmares center around the sensation of not being able to breath with the CPAP mask on.

I've tried raising my pressure, lowering my pressure, changing the exhale relief options, changing humidity levels -- basically everything that can be adjusted on my machine I've adjusted, and I don't get relief.

The AHI that my machine gives me is routinely under 1.5, usually under 1. In my sleep study my RDI was 12. I had only one apnea in the study, but a lot of hypopneas and RERAs, and my SPO2 dropped to 84% I believe (it was around 85% in any case, but I don't recall the specific number).

I've seen two different sleep neurologists at major medical centers, and they basically shrug and say "sorry" when I explain my issues, and tell me that my apnea is treated -- given that my AHI reported by my machine is low -- and that my sleep quality is actually very good. When I point out my high ESS, my constant headaches waking up, and my poor sleep and nightmares, they again say "sorry -- you're actually doing very well" and call for the next patient. I'm seeing a third sleep neurologist in a few weeks. I'm hoping he can provide some answers for me.

I can only imagine that I have an extremely low arousal threshold, so without CPAP I was having a lot of arousals from breathing problems, and with CPAP I have just as many arousals due to problems from the CPAP. I've discovered that there is a growing medical literature on people who have low arousal thresholds, and that I fit the mold exactly -- not overweight, low-ish RDI, more hypopneas than apneas, and oxygen desaturation that doesn't go extraordinarily low. See this for one of the groups papers on identifying people with low arousal thresholds: https://www.atsjournals.org/doi/abs/10. ... 404-0718OC. That group has actually shown that sedating drugs (e.g., trazadone, ambien) actually *improve* AHI for people with low arousal thresholds, whereas they have no real effect on people with higher arousal thresholds (the anecdotes are that they can make apnea worse, but according to these studies, this is not true). So there is obviously no one-size-fits-all fix for apnea, although the only thing the doctors will discuss with me is CPAP and oral appliances (I have used a mandibular advancement device created by a dentist who specializes in sleep disorders and it did not help my breathing).

When I've posted before, some people say I should look into UARS -- I have, and the treatment is still CPAP. My hose is hung on a rod, so that is not an issue, I have the most comfortable mask I've been able to find (and I still find it terribly uncomfortable while sleeping -- I can feel it on my face the entire night, and it leaves scabby marks under my nose where it rubs... and yes I've tried lanolin, changing the tighteness and everything else that is normally recommended -- this is the 7th mask I've tried overall: 4 nasal, 3 FFM), and I've tried most every "trick" people post about on this board (I lurk a lot, but do not post). I have excellent sleep hygiene (I saw a psychologist for CBT-I for quite a while who agreed that my sleep hygiene is impeccable and said she couldn't help me any more), I exercise almost daily, I have only one small cup of coffee in the morning (no caffeine ever after 10am), and I go to bed with at most a light snack in my stomach.

I'm posting because I'm at my wits end. I'm committed to making this work, because I know my health is on the line. But I'm in utter misery. The medical establishment can't seem to help me so far. After a full year I can't acclimate to having the mask on my face. My sleep problems have become so severe that I've had to go part time at work because I don't have the mental wherewithal to perform my job fully -- I am a professor (I have a PhD in neuroscience, so I'm not stupid -- I have read probably almost as much of the medical literature on sleep as some doctors), and I have literally fallen asleep in front of my class. Standing up. More than once.

Is there any hope? Or should I give up?

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

TedVPAP
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Re: One year in and I still feel horrible

Post by TedVPAP » Sat Jan 27, 2018 9:48 pm

I prefer using P10 pillows as they are comfortable and I have essential no leaking issues. I solved my mouth leaking issue by using the Ultimate Chin Strap. It does not prevent mouth leaking, but it limits it to a very low level and muffles any sound.

_________________
Machine: DreamStation Auto CPAP Machine
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: AutoPAP 16-20, Ultimate Chin Strap http://sleepapneasolutionsinc.com/
Use data to optimize your xPAP treatment:
how to see your data https://sleep.tnet.com/resources/sleepyhead
how to present your data https://sleep.tnet.com/resources/sleepyhead/shorganize
how to post your data https://sleep.tnet.com/reference/tips/imgur

drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

Re: One year in and I still feel horrible

Post by drfaust » Sat Jan 27, 2018 9:52 pm

TedVPAP wrote:I prefer using P10 pillows. I solved my mouth leaking issue by using the Ultimate Chin Strap. It does not prevent mouth leaking, but it limits it to a very low level and muffles any sound.
I used P10 pillows for the first six months. I had horrible scabs from them, and they were extremely painful for me, even with lanolin.

The problem with sleep talking is that you do it whether or not you have a chin strap on. Any time you open your mouth in sleep, you leak. Straps do not prevent this.

Note that I have also tried taping my mouth shut (I know that's controversial on here). I just wake up in a panic because my mouth can't open and I'm screaming in my dream.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

TedVPAP
Posts: 967
Joined: Sat Jun 12, 2010 10:29 am

Re: One year in and I still feel horrible

Post by TedVPAP » Sat Jan 27, 2018 10:00 pm

drfaust wrote:
TedVPAP wrote:I prefer using P10 pillows. I solved my mouth leaking issue by using the Ultimate Chin Strap. It does not prevent mouth leaking, but it limits it to a very low level and muffles any sound.
I used P10 pillows for the first six months. I had horrible scabs from them, and they were extremely painful for me, even with lanolin.

The problem with sleep talking is that you do it whether or not you have a chin strap on. Any time you open your mouth in sleep, you leak. Straps do not prevent this.

Note that I have also tried taping my mouth shut (I know that's controversial on here). I just wake up in a panic because my mouth can't open and I'm screaming in my dream.
That too bad about the scabs.
The Ultimate Chin Strap closes the jaw like a standard chin strap, but it also covers the mouth. You can still leak but it is minimized. With effort, you can still open your jaw and mouth breath.

_________________
Machine: DreamStation Auto CPAP Machine
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: AutoPAP 16-20, Ultimate Chin Strap http://sleepapneasolutionsinc.com/
Use data to optimize your xPAP treatment:
how to see your data https://sleep.tnet.com/resources/sleepyhead
how to present your data https://sleep.tnet.com/resources/sleepyhead/shorganize
how to post your data https://sleep.tnet.com/reference/tips/imgur

drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

Re: One year in and I still feel horrible

Post by drfaust » Sat Jan 27, 2018 10:04 pm

TedVPAP wrote: That too bad about the scabs.
The Ultimate Chin Strap closes the jaw like a standard chin strap, but it also covers the mouth. You can still leak but it is minimized. With effort, you can still open your jaw and mouth breath.
Fair enough. But the issue with sleep talking is that it's not under voluntary control. I talk no matter what, almost constantly all night long. I basically never sleep deeply enough to get refreshed because the CPAP keeps me partially aroused and in shallow sleep.

I should also add that with ambien, I actually sleep much better. I don't talk, I don't have nightmares (I have vivid, but normal weird innocuous dreams), I don't get aroused during the night and I wake up feeling refreshed and like I can tackle the world.

But obviously that is not a long-term solution. I just use it one or twice a week so that I can be a normal, functioning member of society and so that my mood doesn't become so poor that I give up on life entirely.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

Mercury
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Re: One year in and I still feel horrible

Post by Mercury » Sat Jan 27, 2018 10:30 pm

the CPAP often blows my mouth open, even with the chin strap
Have you tried mouth-taping?

drfaust
Posts: 55
Joined: Sat Feb 25, 2017 9:09 pm

Re: One year in and I still feel horrible

Post by drfaust » Sat Jan 27, 2018 10:35 pm

Mercury wrote:
the CPAP often blows my mouth open, even with the chin strap
Have you tried mouth-taping?

See my response above. Yes. Sleep talking with anxiety and mouth taping don't mix well.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

USMCVet
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Re: One year in and I still feel horrible

Post by USMCVet » Sat Jan 27, 2018 11:47 pm

Have you considered pushing for further testing not related to sleep apnea?
Are you taking any medications that could be the cause? Thyroid or other medical conditions? Are your oxygen levels still dropping despite CPAP?
Mentally and cognitively I was really struggling and chalked it up to burn out and stress at work. Turns out oxygen still dropping at night and oxygen while sleeping has made a good difference mentally. Still working on tiredness myself though.

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drfaust
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Re: One year in and I still feel horrible

Post by drfaust » Sun Jan 28, 2018 12:09 am

USMCVet wrote:Have you considered pushing for further testing not related to sleep apnea?
Are you taking any medications that could be the cause? Thyroid or other medical conditions? Are your oxygen levels still dropping despite CPAP?
Mentally and cognitively I was really struggling and chalked it up to burn out and stress at work. Turns out oxygen still dropping at night and oxygen while sleeping has made a good difference mentally. Still working on tiredness myself though.
I've had all of the "normal" labs done -- thyroid, vitamin D, iron/ferritin, testosterone, B vitamins, etc -- and they're all normal. So there's no obvious glaring cause.

I've asked my previous sleep physicians if there could be something else going on and they don't want to pursue anything else. I hope the doctor I'm seeing next month might think a little bit more about it.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.

USMCVet
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Re: One year in and I still feel horrible

Post by USMCVet » Sun Jan 28, 2018 12:34 am

drfaust wrote:
USMCVet wrote:Have you considered pushing for further testing not related to sleep apnea?
Are you taking any medications that could be the cause? Thyroid or other medical conditions? Are your oxygen levels still dropping despite CPAP?
Mentally and cognitively I was really struggling and chalked it up to burn out and stress at work. Turns out oxygen still dropping at night and oxygen while sleeping has made a good difference mentally. Still working on tiredness myself though.
I've had all of the "normal" labs done -- thyroid, vitamin D, iron/ferritin, testosterone, B vitamins, etc -- and they're all normal. So there's no obvious glaring cause.

I've asked my previous sleep physicians if there could be something else going on and they don't want to pursue anything else. I hope the doctor I'm seeing next month might think a little bit more about it.
You said Ambien helped but not something you could do all the time right? Try melatonin and see if that helps. Personally I would start at 6 mg. Sometimes ill take 12 mg and it helps me sleep.

If you haven't tried already ( I don't have any experience) I would look into cognitive behavioral therapy and see if that helps. I'm guessing that because of your issue with talking in your sleep. Another option might be an anti anxiety medication. I know when I quit smoking I took zyban which really shut off my brain.

If everything else is fine I can't help but think your talking while sleeping is an important thing to consider.

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LSAT
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Re: One year in and I still feel horrible

Post by LSAT » Sun Jan 28, 2018 5:42 am

IF you are going to try Melatonin...Start with a low dose ( 1mg)..Most pharmacies only sell 3mg, 5mg,10mg.....Melatonin can have side effects and can interact with other meds. Review with your doctor before starting. https://www.webmd.com/sleep-disorders/t ... overview#1

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Arlene1963
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Re: One year in and I still feel horrible

Post by Arlene1963 » Sun Jan 28, 2018 6:17 am

drfaust wrote:
I can only imagine that I have an extremely low arousal threshold, so without CPAP I was having a lot of arousals from breathing problems, and with CPAP I have just as many arousals due to problems from the CPAP. I've discovered that there is a growing medical literature on people who have low arousal thresholds, and that I fit the mold exactly -- not overweight, low-ish RDI, more hypopneas than apneas, and oxygen desaturation that doesn't go extraordinarily low. See this for one of the groups papers on identifying people with low arousal thresholds: https://www.atsjournals.org/doi/abs/10. ... 404-0718OC. That group has actually shown that sedating drugs (e.g., trazadone, ambien) actually *improve* AHI for people with low arousal thresholds, whereas they have no real effect on people with higher arousal thresholds (the anecdotes are that they can make apnea worse, but according to these studies, this is not true). So there is obviously no one-size-fits-all fix for apnea
Hi Drfaust,

Have you seen this study? It also addresses the issue you raise. You've probably come across it before because you say that you've done a lot of research. It was published last year and when I read it at the time I found it very interesting.

(It isn't an industry supported study)


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5181619/


If your doctor agrees, why not try this: ask for another sleep study, and get a breakdown of AHI, RERAs, etc when you are on sedating drugs, without being on CPAP. Also, what do the doctors say about the talking in your sleep? Not sure what this is about, but worth investigating with another sleep study I would think?

It's quite possible that different approaches are needed to treat SDB depending on the "sub type".

What worries me (and probably you too because you aren't taking sleeping tabs every night) is that sedating drugs mess sleep architecture and so you will get less REM sleep. Not ideal in the long term.

It really is quite a conundrum.

However, maybe someone can come up with a solution or suggestion that might just be a break through ... so please don't give up hope. It is hard when you are sleeping so badly to have hope, and even the energy to try, I know, been there.
Last edited by Arlene1963 on Sun Jan 28, 2018 6:34 am, edited 1 time in total.

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49er
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Re: One year in and I still feel horrible

Post by 49er » Sun Jan 28, 2018 6:32 am

Arlene,

Not to hijack this thread but I wanted to thank you for posting that link as I feel it may be applicable to my situation. If drfaust or anyone is interested in following up with the author, Dr.Eckert, PhD, as I did, here is the contact information:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5181619/

drfaust, good luck in solving your problems.

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Arlene1963
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Re: One year in and I still feel horrible

Post by Arlene1963 » Sun Jan 28, 2018 9:52 am

Glad you found it useful, 49er.

drfaust, I want to add that Trazodone apparently doesn't suppress REM sleep. You probably know this already, but I just wanted to come back and correct my mistake.

Also I just went back and read this thread of yours at the 6 month mark and can see that you have already tried Trazodone and it didn't work for you. So scratch that suggestion.

viewtopic.php?f=1&t=155410&st=0&sk=t&sd=a

drfaust
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Re: One year in and I still feel horrible

Post by drfaust » Sun Jan 28, 2018 2:26 pm

Good morning everyone! <yawn> Thanks for the thoughtful replies -- this is why I came back. People on this board are very, very helpful.

Some more relevant info:

I have had two PSGs -- the first was the one that diagnosed me with OSA and a second titration study. I had no REM in either study. I take a relatively high dose of venlafaxine for depression and anxiety disorder, and venlafaxine (Effexor) is a known REM suppressant. Another problem is that I got only around 180min of sleep in each study. In my diagnosis PSG I went through one sleep cycle (no REM, though) and then woke up and could not sleep anymore. In my titration study I spent virtually the entire time going between being awake and being in Stage 1 (N1) sleep -- so, almost no N2, and no N3 or REM sleep. I could not stay asleep with the CPAP on.

And I got very, very little sleep in either study. When I ask doctors about this they say not to worry about it. When I ask doctors about the lack of REM they also say not to worry about it, and to focus on CPAP and my OSA. They don't want to talk about the fact that I showed very abnormal sleep architecture.

I do suffer from generalized anxiety disorder and depression. That's what the venlafaxine is for. It does mess with sleep architecture (it is an SNRI drug), but I had sleep problems long before I was on any psych meds. I have had frequent awakenings, and lots of vivid dreams with horrifying nightmares (shouting and screaming and kicking much of the night). These was happening before I was on any medications, and continues after I'm on medication.

Clonazepam suppresses my nightmares and I get very restful sleep with it at moderate doses (1 mg), but this is not something I want to take regularly because I do not want to build up a tolerance.

I've tried many things for sleep: melatonin, ambien, trazodone, amitriptyline, gabapentin, seroquel, mirtazapine, lunesta, and I'm sure a few more that I'm forgetting.
[*]Gabapentin did nothing, and made my nightmares marginally worse
[*] Seroquel made me drowsy, but my sleep was still fragmented
[*] Amitriptyline was fine, but the doctor doesn't like mixing it with my venlafaxine because it can lead to serotonin syndrome
[*] Trazodone didn't help me at all, and also carries a risk of serotonin syndrome with the venlafaxine
[*] Melatonin helps me fall asleep faster. My most recent sleep doc said to stop taking it, though, because it can lead to an increase in nightmares. I stopped taking it and still had nightmares, so I have decided to take 3mg -- I sleep better with it than without it. And it didn't seem to impact my nightmares. But I still have significant arousals and trouble staying asleep and unrefreshing sleep even with it.
[*] Lunesta (3mg) did nothing to help me sleep
[*] Ambien (10mg) helps me sleep, but you can't take this every night or risk both tolerance and dependence.
[*] I've recently added mirtazapine at night. It's an atypical antidepressant that has sedating properties and can improve slow wave sleep. It's only been a couple of weeks, so I'm seeing how it goes. I'm still very tired with it. I feel more sedated at night and I don't wake up at 3am unable to go back to sleep with it, but the quality of sleep I get is still not good.

I've done several rounds of CBT-I. It hasn't helped. The most recent sleep psychologist I was referred to for CBT-I did an intake interview and wrote in her clinical note that I was already fully aware of CBT-I methods and had pristine sleep hygiene, and that she would not be able to provide me any further help -- that my sleep issues lie beyond those that are treatable with CBT-I.
USMCVet wrote: You said Ambien helped but not something you could do all the time right? Try melatonin and see if that helps. Personally I would start at 6 mg. Sometimes ill take 12 mg and it helps me sleep.

If you haven't tried already ( I don't have any experience) I would look into cognitive behavioral therapy and see if that helps. I'm guessing that because of your issue with talking in your sleep. Another option might be an anti anxiety medication. I know when I quit smoking I took zyban which really shut off my brain.

If everything else is fine I can't help but think your talking while sleeping is an important thing to consider.
See above on melatonin and CBT. Zyban = burpropion = wellbutrin. I've taken that in the past and had bad reactions to it. But I've tried lots of other anti-anxiety meds that can help sleep (see above).
Arlene1963 wrote: Hi Drfaust,

Have you seen this study? It also addresses the issue you raise. You've probably come across it before because you say that you've done a lot of research. It was published last year and when I read it at the time I found it very interesting.

(It isn't an industry supported study)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5181619/

If your doctor agrees, why not try this: ask for another sleep study, and get a breakdown of AHI, RERAs, etc when you are on sedating drugs, without being on CPAP. Also, what do the doctors say about the talking in your sleep? Not sure what this is about, but worth investigating with another sleep study I would think?

It's quite possible that different approaches are needed to treat SDB depending on the "sub type".

What worries me (and probably you too because you aren't taking sleeping tabs every night) is that sedating drugs mess sleep architecture and so you will get less REM sleep. Not ideal in the long term.

It really is quite a conundrum.

However, maybe someone can come up with a solution or suggestion that might just be a break through ... so please don't give up hope. It is hard when you are sleeping so badly to have hope, and even the energy to try, I know, been there.
Thanks for this! I have read many, many of Danny Eckert's papers, though I hadn't found that one. He's one of the main people documenting the "low-arousal threshold" subtype of OSA, and how it's different from typical OSA.

Sadly, my REM seems to be gone (at least in my sleep studies), so I'm not sure what effect further meds would have. I'm seeing a new doctor next month and will ask his opinion on a new study.

I left my last doctor after a really horrifyingly traumatic appointment -- she rolled her eyes and laughed at me when I started crying during the appointment because I was so upset and frustrated about not sleeping. A board certified neurologist in sleep medicine did this. She told me how so many of her other patients have it so much worse than I do and that I really needed to suck it up and cope better. Sigh. Anyway.
49er wrote:Arlene,

Not to hijack this thread but I wanted to thank you for posting that link as I feel it may be applicable to my situation. If drfaust or anyone is interested in following up with the author, Dr.Eckert, PhD, as I did, here is the contact information:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5181619/

drfaust, good luck in solving your problems.
I never thought about contacting Dr. Eckert directly -- did contacting him get you pointed in any direction for help? I'd consider seeing him in clinic, but he's in Australia :-/

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: DreamWear Nasal CPAP Mask with Headgear
Additional Comments: Pressure 6-11. RDI of 12, almost all RERAs in PSG study; AHI under 1 with CPAP; still feel terrible.