Newbie here- need help

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Cubbieblue99

Newbie here- need help

Post by Cubbieblue99 » Sat Sep 19, 2015 11:46 am

Hi there. New to the forum. Dx'd with UARS about 3 yrs ago. Started with the dental device TAP and I tolerated it. Dud a home sleep study after I'd be on it a little while and sleep doc said it looked better but I still had daytime sleepiness so he switched me to CPAP. I've tried several masks over the past 2 yrs and none of them have worked. I am now using the Airmask P10 which is prob the best one out of the bunch but still have problems.

I am a stomach sleeper and have a CPAP pillow with sides cut out. I bought a CPAP but it was too thick so I had a seamstress cut out the sides of my flatter comfortable pillow. My issue is I can only sleep w it an hour or 2 and then I somehow take it off during in my sleep. I don't remember doing it but when I wake up in the morning it's off and I've turned the machine off. Sometimes it's even hard to fall asleep it at all as I feel I'm restricted to keep my head turned a certain way ave if I roll to the other side w my face the cord and mask bother me. So I'm been trying to get used to the CPAP for about 2 yrs now.

I've even tried the Provent and couldn't get used to not being able to exhale out of my nose. CPAP was much better as far as breathing. Sleep doc told me my setting me were fine on the CPAP. He's even tried nuvigil (gave me a headache) Abe Ritalin (which made me feel weird) to try to control the daytime sleepiness. My main issue is I have to take a 2 hr nap Everest after work which is messes up my evenings where is like to do other things.

Any suggestions? I recently talked to a nurse that owns a CPAP company and she told me there is a doctor in the Chicagoland area where I live that does an implant device like a pacemaker that stimulates the tongue from closing the airway. I made a consultation appt for Nov just to check into it. I've been reading online abs see there's 2 kinds- Inspire and TMH? - don't know which one this doc does yet. I don't even know if I'd be a candidate bc I have UARS and not OSA plus it's not considered mod or severe per my doctor. He says numbers show its mild and my symptoms (daytime sleepiness) are more symptomatic than I should be if that makes sense. Otherwise I might meet criteria as I'm thinner and can't seem to operate CPAP.

I just want to find some solution to help me! It's been a very frustrating few years in addition t years prior before I was even officially dx'd w UARS.

Cubbieblue99

Re: Newbie here- need help

Post by Cubbieblue99 » Sat Sep 19, 2015 11:51 am

Sorry for typos- I meant to say CPAP pillow was too thick and take a nap everyday after work (not Everest lol).

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49er
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Re: Newbie here- need help

Post by 49er » Sat Sep 19, 2015 11:58 am

Cubbieblue99 wrote:Hi there. New to the forum. Dx'd with UARS about 3 yrs ago. Started with the dental device TAP and I tolerated it. Dud a home sleep study after I'd be on it a little while and sleep doc said it looked better but I still had daytime sleepiness so he switched me to CPAP. I've tried several masks over the past 2 yrs and none of them have worked. I am now using the Airmask P10 which is prob the best one out of the bunch but still have problems.

I am a stomach sleeper and have a CPAP pillow with sides cut out. I bought a CPAP but it was too thick so I had a seamstress cut out the sides of my flatter comfortable pillow. My issue is I can only sleep w it an hour or 2 and then I somehow take it off during in my sleep. I don't remember doing it but when I wake up in the morning it's off and I've turned the machine off. Sometimes it's even hard to fall asleep it at all as I feel I'm restricted to keep my head turned a certain way ave if I roll to the other side w my face the cord and mask bother me. So I'm been trying to get used to the CPAP for about 2 yrs now.

I've even tried the Provent and couldn't get used to not being able to exhale out of my nose. CPAP was much better as far as breathing. Sleep doc told me my setting me were fine on the CPAP. He's even tried nuvigil (gave me a headache) Abe Ritalin (which made me feel weird) to try to control the daytime sleepiness. My main issue is I have to take a 2 hr nap Everest after work which is messes up my evenings where is like to do other things.

Any suggestions? I recently talked to a nurse that owns a CPAP company and she told me there is a doctor in the Chicagoland area where I live that does an implant device like a pacemaker that stimulates the tongue from closing the airway. I made a consultation appt for Nov just to check into it. I've been reading online abs see there's 2 kinds- Inspire and TMH? - don't know which one this doc does yet. I don't even know if I'd be a candidate bc I have UARS and not OSA plus it's not considered mod or severe per my doctor. He says numbers show its mild and my symptoms (daytime sleepiness) are more symptomatic than I should be if that makes sense. Otherwise I might meet criteria as I'm thinner and can't seem to operate CPAP.

I just want to find some solution to help me! It's been a very frustrating few years in addition t years prior before I was even officially dx'd w UARS.
Hi Cubbiblue,

As one who is also looking into implant therapy, as an FYI, you have to have a moderate to severe AHI to be considered a candidate for the TMH study. I thought Inspire Therapy has the same rules but whether they are allowed to do anything off label, I am not sure. If you want to PM me, I can give you the email address for the contact I have at Inspire who answered some of my other questions. That way, you won't waste time if you find out you don't qualify.

The TMH study will not consider RERAs. After getting an RDI of 23 with an AHI of 5 last year, I was concerned I wouldn't qualify for this therapy. But "thankfully", the recent study I had came with an AHI of 25 with no RERAS. Because I fear my O2 desats aren't going to qualify me, I am going to make an appointment with an Inspire surgeon on Monday and see what happens.

Anyway, if you want advice in the hopes of maybe improving your pap therapy, you have come to the right place. Use the link in my signature to fill out your equipment profile so people can better tailor their responses to your situation.

Good luck to you.

49er

Cubbieblue99

Re: Newbie here- need help

Post by Cubbieblue99 » Sat Sep 19, 2015 12:04 pm

Sorry left out a part. So my sleep doc said that if my airway opened both posteriorly and anteriorly then the dental device doesn't help. Sure enough after I had already moved onto the CPAP, I went to an ENT who put a tube down my nose and said my airway does open in both directions. So appears this is why dental device didn't help.

Ricci
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Re: Newbie here- need help

Post by Ricci » Sat Sep 19, 2015 12:09 pm

hmm
hope it goes well for you
i don't think any masks work for "stomach sleepers"
i could be wrong, I'm rather new at this myself

Peace
Ricci

Cubbieblue999
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Re: Newbie here- need help

Post by Cubbieblue999 » Sat Sep 19, 2015 12:16 pm

Ricci wrote:hmm
hope it goes well for you
i don't think any masks work for "stomach sleepers"
i could be wrong, I'm rather new at this myself

Peace
Ricci
Thanks Ricci, I'm beginning to think the same thing. It's very frustrating.

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Re: Newbie here- need help

Post by Pugsy » Sat Sep 19, 2015 12:29 pm

I find myself sleeping on my stomach all the time.
Some masks are more of a challenge in finding a workable head/neck/bed pillow position than others but that doesn't mean it can't be done. You can sleep in any position with any mask if you want to but it may take some work to figure out how to get it done but it can be done. We have full face mask users who sleep on their stomachs.
Usually the less presence the mask (like with the P10) has on the face makes for less working figuring it out but even the big bulky full face masks with hard frames don't stop some people.

I am using the ResMed AirFit P10 nasal pillow mask. I sleep quite well in any position I might seem to want to sleep.

To OP here...do you want ideas to perhaps help you keep the mask on all night?
Taking the mask off during the night and not remembering it is quite common but normally someone doesn't persist in doing that for 2 years. It's become a habit and a bad habit at that.
It takes work to break bad habits but it can be done...and it won't be easy.
You say you need help but it wasn't clear to me exactly what kind of help you wanted.

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Cubbieblue999
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Re: Newbie here- need help

Post by Cubbieblue999 » Sat Sep 19, 2015 1:42 pm

Pugsy wrote:I find myself sleeping on my stomach all the time.
Some masks are more of a challenge in finding a workable head/neck/bed pillow position than others but that doesn't mean it can't be done. You can sleep in any position with any mask if you want to but it may take some work to figure out how to get it done but it can be done. We have full face mask users who sleep on their stomachs.
Usually the less presence the mask (like with the P10) has on the face makes for less working figuring it out but even the big bulky full face masks with hard frames don't stop some people.

I am using the ResMed AirFit P10 nasal pillow mask. I sleep quite well in any position I might seem to want to sleep.

To OP here...do you want ideas to perhaps help you keep the mask on all night?
Taking the mask off during the night and not remembering it is quite common but normally someone doesn't persist in doing that for 2 years. It's become a habit and a bad habit at that.
It takes work to break bad habits but it can be done...and it won't be easy.
You say you need help but it wasn't clear to me exactly what kind of help you wanted.
Hi that is the same mask I am using. Yes I need help to keep it on all night. Then I guess if that doesn't work, I need to try to find an alternative method like the implant if I'm even a candidate.

I have had it for 2 yrs but go through periods where i get so frustrated I don't even put it on at night.

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PoolQ
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Re: Newbie here- need help

Post by PoolQ » Sat Sep 19, 2015 2:27 pm

Do you have a hose hanger so the hose comes down from above instead if snaking over the edge of the bed. Works for turning over.

I sleep on my stomach on and off every night. I like to sleep on the edge of the pillow, a standard one for me, and let the mask hang over the edge. The straps support it just fine. I currently use the Amara View and sometimes the Simplus, both FFM.

It seems there could be two reasons you take off the mask:
1. when you move you get leaks and they make noise, used to wake me up all the time.
2. one or more or the "comfort" settings need to be adjusted to keep you from not tolerating the CPAP. Something may be set just a little off so it only impacts your sleep after you have put up with it for awhile.

I found that with my Doctor he only focuses on the therapy settings and pays ZERO attention to any "comfort" settings. It is their job to get the apnea's under control and it seems to be my job to figure out how to get comfortable with CPAP so I use it. You might try adjusting some of the comfort settings a little and see if it get better or worse.
Sleeping MUCH better now

Cubbieblue999
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Re: Newbie here- need help

Post by Cubbieblue999 » Sat Sep 19, 2015 6:34 pm

PoolQ wrote:Do you have a hose hanger so the hose comes down from above instead if snaking over the edge of the bed. Works for turning over.

I sleep on my stomach on and off every night. I like to sleep on the edge of the pillow, a standard one for me, and let the mask hang over the edge. The straps support it just fine. I currently use the Amara View and sometimes the Simplus, both FFM.

It seems there could be two reasons you take off the mask:
1. when you move you get leaks and they make noise, used to wake me up all the time.
2. one or more or the "comfort" settings need to be adjusted to keep you from not tolerating the CPAP. Something may be set just a little off so it only impacts your sleep after you have put up with it for awhile.

I found that with my Doctor he only focuses on the therapy settings and pays ZERO attention to any "comfort" settings. It is their job to get the apnea's under control and it seems to be my job to figure out how to get comfortable with CPAP so I use it. You might try adjusting some of the comfort settings a little and see if it get better or worse.
Hi I never knew there was a such thing as a CPAP hanger. Can I get one online or do u have to make it yourself? That may help.

Also I didnt know there was a such thing as comfort settings. Where do I find those and how can they be adjusted?

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Cubbieblue999
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Re: Newbie here- need help

Post by Cubbieblue999 » Sat Sep 19, 2015 7:11 pm

So I just ordered a hose buddy in Amazon. Hope it will help some!

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Re: Newbie here- need help

Post by library lady » Sat Sep 19, 2015 8:09 pm

I am a side sleeper, but I toss and turn a lot, and the hose follows me. Sometimes I have to adjust it slightly before I get to sleep, but otherwise it hasn't been necessary for me to use a hose hanger. It could be helpful for you.
If you will search "falcon position" at the top of the cpaptalk page, there are a couple of threads about this position that has helped a number of stomach sleepers. There are pictures of it; it looks really doable. You can probably also find something on it by googling it.

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Re: Newbie here- need help

Post by Pugsy » Sun Sep 20, 2015 8:20 am

You might also consider trying a little tape over the straps on your cheeks so that the slight discomfort associated with the tape being pulling off the skin might wake you up enough so you can stop the unwanted "removing the mask in my sleep and not realizing it".

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Re: Newbie here- need help

Post by Cubbieblue999 » Sun Sep 20, 2015 9:45 am

Pugsy wrote:You might also consider trying a little tape over the straps on your cheeks so that the slight discomfort associated with the tape being pulling off the skin might wake you up enough so you can stop the unwanted "removing the mask in my sleep and not realizing it".
That's an idea. Thanks. Can anyone give me any insight to these "comfort settings" on the CPAP itself that was mentioned above. I don't know how to get to those. I don't even really know what they are.

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Re: Newbie here- need help

Post by LSAT » Sun Sep 20, 2015 9:59 am

Ricci wrote:hmm
hope it goes well for you
i don't think any masks work for "stomach sleepers"
i could be wrong, I'm rather new at this myself

Peace
Ricci
You're wrong!

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