Sleepless in Seattle - New ASV User

[Amronjohnson]

I was recently diagnosed with complex sleep apnea. Am brand new so don't know much. Just got an asv machine and am on second mask. The guy tried all kinds and apparently none fit my face correctly. I couldn't use the nasal mask because I breathe through my mouth so now I have a mirage liberty that covers my mouth and has little nose plugs. It seems to seal ok and isn't too horrible. My problem is I cannot fall asleep with any kind of mask so it can't help me. I lay there for a few hours and regardless of how tired I am from going without sleep for days, I simply can't fall asleep until I take it off. All I have gotten from this blasted machine is an extreme dry throat and runny nose. Looking like I'll just have to take my chances of dying in my sleep. Are there some people who just can't use these so are doomed?

[49er]

I was recently diagnosed with complex sleep apnea. Am brand new so don't know much. Just got an asv machine and am on second mask. The guy tried all kinds and apparently none fit my face correctly. I couldn't use the nasal mask because I breathe through my mouth so now I have a mirage liberty that covers my mouth and has little nose plugs. It seems to seal ok and isn't too horrible. My problem is I cannot fall asleep with any kind of mask so it can't help me. I lay there for a few hours and regardless of how tired I am from going without sleep for days, I simply can't fall asleep until I take it off. All I have gotten from this blasted machine is an extreme dry throat and runny nose. Looking like I'll just have to take my chances of dying in my sleep. Are there some people who just can't use these so are doomed?

Welcome Amronjohnson,

I am so sorry for your difficulties.

Have you tried listening to podcasts to see if that would help you fall asleep? Many times, that helps me greatly.

And have you tried nasal pillow masks? Many people who thought they couldn't wear them were surprised to found out they could.

Finally, you might want to view the Nasal Breathing Series by Dr. Barry Krakow to see if anything might be interfering with successful pap therapy usage since any nasal congestion/obstruction issues can be a big factor in tolerating a mask.

http://sleeptreatment.com/index.php?opt ... temid=1785

Don't give up, ok?

49er

[BlackSpinner]

One thing that helps a lot of people is to use the mask and machine while watching tv or playing video games. The idea is to get your mind off the object and the get your "body/mind" used to wearing it and feel safe wearing it. You have to basically start associating the mask with safety, relaxation and comfort, starting new habits can be hard. It is kind of like toilet training a toddler, anger doesn't work but rewards and positive feedback works well.

[Pugsy]

In addition to the suggestion to use the mask and machine while awake to help you get used to things..

Are you having issues with the pressure settings? Talk with your doctor...maybe a short term reduction until you get used to things a little better..

For sure talk to the doctor though about the lack of being able to get to sleep...some people will just have the brain be hyperactive about the mask and machine...discuss possibly adding something to help get to sleep...either OTC or RX.

Quitting is a poor option...you might end up going to sleep and not waking up.

[Amronjohnson]

thanks for the replies. I have been leaving tv on and that is a little distraction that helps some but still can't fall asleep. (btw, the nose plugs thingies are called nasal pillows…I just didn't use the right terminology). I have always had sleep issues if anything is out of the norm; i.e., travel, strange bed, noises, etc. At this point I have no idea how long I may have had this central sleep apnea and it was kind of a fluke they found it (sometimes ignorance is bliss). Anyway, now I know I have it, I do prefer to stay alive. Just retired, just lost 50 lbs, just beginning life I'd like to think. They have scared me enough that I might now simply "not wake up" one day, which relatively speaking is not the worst way to go out….but they say I could have a stroke and not actually die (leaving family to deal with it) which is not acceptable to me. So, I'm giving this my all. I want it to work desperately. I want to get one nights sleep with it to see if it really feels any different. I feel like I have a constant throat irritation and runny nose when I use it. Is that normal? Is that what I can expect to live with? I may ask him for sleeping pills but I heard that is dangerous….but maybe only so if not using the machine? This is such a strange disorder to get out of the blue. Can't predict anything; don't know what to expect; what's normal what isn't; I know it's too soon to give up and I'm not much of a quitter but at some point I imagine it's going to work or it will not work, especially when the mask guy tells me I've tried them all and if this one doesn't work he doesn't know what to do ): I wish I had the more common kind then I'd hold out hope my continued weight loss would help but apparently no cure/ no options for central other than this machine. I appreciate the tips from all of you with more experience.

[Pugsy]

I have always had sleep issues if anything is out of the norm; i.e., travel, strange bed, noises, etc.

Sounds like your sleep has always been rather fragile and maybe had a little bit of sleep onset insomnia thrown in.
Adding the alien to your face blowing air up your nose and mouth sure doesn't help things...and yes, can make that fragile sleep even more broken.

I doubt you have tried ALL the full face masks out there..maybe all that your DME happens to carry.

I feel like I have a constant throat irritation and runny nose when I use it. Is that normal?

Are you using a humidifier? and if so...at what setting?
Some people do better with more or lots of added moisture and some people do better with less or none.
It's a personal preference...no right or wrong.
I get a horrible runny nose if my nasal mucosa and sinuses get too dry (forget to add water to humidifier or use too low of a setting) but others get the same symptoms with too much added moisture.

Depending on your equipment being used ...you may have additional options to help relieve those annoying symptoms...so add your equipment to your profile and we can advise what those options might be depending on which equipment you are using.

Oh...can you edit your Subject line to add "ASV" to the topic title...that way you will get the attention of the other ASV users on the forum who have had difficulties and got past them.
I am currently using an ASV machine..the S9 Adapt but just started using it and had a long history of doing well with cpap/apap/bipap...so I was lucky and I sleep easily with it.

Sleeping pills that are RX...there are some that have minimal effect on sleep apnea and sometimes whatever minor risks might be associated with them are preferable to no sleep at all or untreated sleep.
This is why I said talk to your doctor about your lack of sleep....sometimes a short term use to help get over this road block is preferable to untreated sleep or no sleep.

There's also some OTC sleep meds that some people have good results with and their side effects are minimal.
With any medication, RX or OTC, there's always some risk vs rewards and sometimes those risks are a better option than blowing off therapy totally.
I have severe pain issues...after talking with my doctor we determined that the slight risk of adding pain medication so that the pain doesn't wake me up a gazillion times a night is preferable to no sleep or highly fragmented sleep that is non restorative. Sometimes we just have to make some sort of compromise and if apneas are increased a bit...that's why we have the machine...let it do its job.

[Amronjohnson]

Pugsy: thanks so much for all the info. I added the equipment (except I have no idea what the software is and will add ASV as soon as I figure out how to do the editing. Appreciate the info on the sleeping pills….will talk with doc soon. I did tell the DME (not sure what that stands for but assume its the mask guy) that I saw tons of masks online and he said they are older versions of the same basic masks but I suspect you are correct…..they want to use what they carry. He said he set the internal setting on humidifier (that I can't access) on the highest setting of 90% after I complained about dry throat…I can adjust the humidity in the hose up to five (will try that tonight.) Thanks again. I need all the support I can get with this.

[Pugsy]

Does your hose have a black end at the humidifier attachment? If it does you have a heated hose.
You might have a heated hose capable humidifier but only have a regular hose....the heated hose capable lid has a place for electric connect on the swivel connector.

What operating system is on your computer? Windows 7 or older? or 8.0 or 8.1??

You should be able to access your clinical menu if for nothing else but changing humidity settings...
Go here to see how to access the clinical setup menu...there's also a video available at the bottom of the page.
This is a generic "how to" explanation....not for your 960 machine but how to access the setup menu is the same for all machines.
http://www.apneaboard.com/pr-system-one ... structions
I don't have the provider manual for the 960 but I can get you a copy of the 950 manual (will send you a private message with link for it) ... the main differences between 950 and 960 is the heated hose information and auto EPAP settings for pressure so the 950 manual will get you real close and if you have a heated hose we can explain those settings if needed separately.

Once I know which operating system is on your computer I can advise on software you can use.

Look carefully at the image of the swivel connector here to see what I mean about electrical connection.
https://www.cpap.com/productpage/pr-60- ... anced.html

The heated hose offers more ability to adjust humidity and temperature settings to offer optimal comfort potential.
It's considered an option so not all of the 60 series machines come with it.
It requires the heated hose, special lid on the humidifier and an 80 watt instead of 60 watt power supply (you can check wattage on the brick part of your power supply).

[JDS74]

You've got the same machine as me.
That means that you'll need the latest version if Encore Pro to get at your data.
The cellular modem on the back covers the SD card slot and the card.

I can't tell from your post whether claustrophibia is part of your problem.
My claustrophobia prevented me from using the usual mask types but I stumbled on to the Oracle 2 mask that solved the "I can't sleep with a mask clinging to my face problem."
It brings its own set of problems which I document with a link at the bottom of this post.

You need to talk to your doctor about CPAP conditioning training. The sleep center at Mayo in Rochester offers this service for folks with your type of problem. Your doctor may be able to find a similar center nearer to you. I can recommend Dr. Junna at Mayo's as a contact point for your doctor if you want to go that route.

PM me for contact information if you need it.

BTW the Apneaboard folks can get you the provider manual for the 960.

[Amronjohnson]

thanks JDS74. In fact, I do get claustrophobic so I might check into your mask (after I read your link! What is cpap conditioning training? I will ask the doc about this. whatever will give me a fighting chance I guess. thanks again,

[Amronjohnson]

Hmmm. The oral device sounds like it could possibly work and I will ask about it if this hybrid one doesn't work (which I won't know til I actually fall asleep with it). I think last night I actually may have tried to fall asleep. I know at one point my cheeks did puff up as was mentioned in your link. What is that from? does that mean there is a leak somewhere?

[JDS74]

thanks JDS74. In fact, I do get claustrophobic so I might check into your mask (after I read your link! What is cpap conditioning training? I will ask the doc about this. whatever will give me a fighting chance I guess. thanks again,

What the doc up at Mayo's described to me is a series of exercises that, over time, reduce the panicky feelings that come from donning the CPAP mask. If you go to Mayo, they will help you make it work. You are not alone on this path.

My neurologist up at Mayo kept interrupting our discussion of things neurological with the comment "Untreated severe sleep apnea will kill you!"

That was after I had failed the titration. If you can get past the feelings of panic with a nasal or FFM, those would be better choices because your nasal passages provide better humidity control.

If you can't, then the Oracle 2 mask may be a good choice.

BTW, my experience at Mayo's is that cost there are less than cost at medical centers here at home.

Please do read my post because it gives you a good idea of what you'll need to do to make it work.
I'm available for any questions.

If you are at an ASV machine, going untreated will eventually kill you so please make every effort to make it work.

[Amronjohnson]

thanks. I am trying my hardest. Calling doc today to see if he can give something to help me fall asleep. Today I have a little rash around where the mask goes but I only had it on for two hours last night.

[BlackSpinner]

thanks for the replies. I have been leaving tv on and that is a little distraction that helps some but still can't fall asleep.

No that is not what I meant. During the day or evening put the mask and machine on and sit and watch something exciting. Something that will take you totally away from what is happening. Nothing to do with going to bed (unless it is porn you are watching). You want to get you body/mind used to that it is ok and you will survive with this thing on.

Today I have a little rash around where the mask goes but I only had it on for two hours last night.

Line the mask with a tissue paper where it touches your skin. My skin doesn't like masks either.

[Pugsy]

If you didn't wash and rinse your mask prior to putting it on...do that. Some people are super sensitive and extra washing and rinsing helps remove "stuff" that might aggravate the skin. Some people even leave masks out for a week or 2 before wearing because of this issue.

And as Blackspinner suggested..some sort of little mask liner can help too.