A newbie message.

[jbankson]

I am hoping this forum might be the things that actually helps. At this point I am ready to toss my APAP machine out the window and accept whatever the risks are.

1.) I have been through 2 sleep sessions in the clinic and 1 at home.
2.) I test as having more than 60 episodes per hour.
3.) I never feel tired not have any awareness of waking or not being asleep.
4.) I only know I have an issue because my travel friend reminds me every time we share a room. I have not been married nor shared a bed with anyone in 25 years. So when she tells me I snore "like a trucker" and worse yet, stop breathing and gasp for breath I assume she is spot on.
5.) 10 days ago I started my third attempt in 5 years to find a combination that works for me. My previous attempts ended with frustration, exhaustion and total disruption and each time hid the machine in my closet.

That is the basic history. I am a side sleeper and hate trying to sleep on my back. I drop my jaw severely when I sleep and become a mouth breather. As a result, I can't get a nasal style mask to work. When my machine ramps up, no chin strap I have founds stop air from pushing out my mouth and waking me up.

I have tried my 3rd mask in 10 days and insurance only covered the first one. The others I have tried were recommended from a CPAP Website.

What happens is I fall asleep fine but wake anywhere from 90 minutes to 2 hours later coughing and choking and air blowing by all over the mask. My mouth is scary dry and I have even tired using the largest chin strap I can find but my jaw opens enough that my bottom lip will even push below the mask.

I try staying my my back but I just keep waking until I rip the mask off in frustration and then (in my mind) instantly fall asleep until morning.

I have never suffered from symptoms per se but first looked into this due to my friends insistence. The clinic doctors don't seem to want to get involved and basically blame me. I know my machine (the Philips with a water reservoir) starts a 4cm and when I wake up has been as high as 14 or 15.

I actually feel asleep on a team call today and was not muted. No one can imagine the embarrassment I felt. I never had that occur from the affliction. But rather trying to use the treatment.

I am looking for guidance as to what people do since my sleep clinic folks don't appear to want to listen. I am basically being treated like make it work or die.

My machine is a RemStar 560P from Philips with a water tub attached. I have tried 4 different full face masks. Nasal masks were worthless for me even with TIGHT chin straps. The full face starts out at 4cm and I fall asleep. Within 2 hours I am waking up with a DRY mouth, choking and noise leaks all around the mask. Once awake it is impossible to get comfortable again so I wind up pulling it off to go back to sleep.

I am at the point once again where exhaustion is going to make me give up again. I so want this to work as I am sure I have severe sleep apnea but just can't get more than 2 hours in.

Jeff

[palerider]

I am a side sleeper and hate trying to sleep on my back.

so, don't sleep on your back. sleep on your side, either with a special pillow, or on the edge of a regular one so it doesn't mash the mask out of place. many peoples apnea is worse when on their back.

[Janknitz]

Welcome, Jeff, and yes, you do need CPAP.

That is the basic history. I am a side sleeper and hate trying to sleep on my back. I drop my jaw severely when I sleep and become a mouth breather. As a result, I can't get a nasal style mask to work. When my machine ramps up, no chin strap I have founds stop air from pushing out my mouth and waking me up.

You can definitely keep sleeping on your side--it's better for you anyway in terms of apnea.
Many people here use tape over their lips to keep the mouth sealed with higher pressures, but it's something to get used to. Other options are FF masks which help keep the jaw from dropping.

I have tried my 3rd mask in 10 days and insurance only covered the first one. The others I have tried were recommended from a CPAP Website.

Your DME should have allowed you to swap out the mask that wasn't working for you. All of the manufacturers have programs that allow them to get credit for the discarded masks. If they refused, they are too lazy to do the paperwork to make sure that this is working for you, and you should re-think keeping them as your DME. Our hosts offer "mask insurance" for an extra charge that allows you to return a mask that doesn't work for you (covers the postage) and get a new one to try.

What happens is I fall asleep fine but wake anywhere from 90 minutes to 2 hours later coughing and choking and air blowing by all over the mask. My mouth is scary dry and I have even tired using the largest chin strap I can find but my jaw opens enough that my bottom lip will even push below the mask.

Taping will help with this, but you may not be ready (desperate enough) to try that yet? In the meantime, practice ALL the time you are awake (except when you are eating or talking) to rest the tongue on the roof of your mouth, just behind the front teeth. That might help train you to keep your oropharynx sealed even in sleep. Since you lie on your side, you can also tuck a pillow or rolled towel under your chin to help prop it up--works if you tend to stay in one position all night.

I try staying my my back but I just keep waking until I rip the mask off in frustration and then (in my mind) instantly fall asleep until morning.

Stay on your side. You can learn some tricks to "hang the mask off the edge of the pillow" or use a buckwheat filled pillow to make a depression for your mask.

I have never suffered from symptoms per se but first looked into this due to my friends insistence. The clinic doctors don't seem to want to get involved and basically blame me. I know my machine (the Philips with a water reservoir) starts a 4cm and when I wake up has been as high as 14 or 15.

We can teach you here to download your data via sleepyhead and see WHY it's going so high. It may be some fine tuning helps you have less dramatic pressure changes and less leaking, so you can be more comfortable while getting optimized treatment. But you are still in a bit of denial that makes it harder to persevere.

I actually feel asleep on a team call today and was not muted. No one can imagine the embarrassment I felt. I never had that occur from the affliction. But rather trying to use the treatment.

It will get better if you work at it.

I am looking for guidance as to what people do since my sleep clinic folks don't appear to want to listen. I am basically being treated like make it work or die.

We are here to help you if you work with us. But you won't get any sympathy for not using your machine. We help those who help themselves.

My machine is a RemStar 560P from Philips with a water tub attached. I have tried 4 different full face masks. Nasal masks were worthless for me even with TIGHT chin straps. The full face starts out at 4cm and I fall asleep. Within 2 hours I am waking up with a DRY mouth, choking and noise leaks all around the mask. Once awake it is impossible to get comfortable again so I wind up pulling it off to go back to sleep.

Do you know you were given an older model machine? Did you do any research before you met your DME? (You aren't expected to know you should have done your homework, but you are a bit behind the 8-ball now, although that's a generally good machine). We can help you with masks IF you can tell us the MAKE and MODEL of the ones you've already tried. Look on our host's website (cpap.com) for photos to help you identify what you've already tried.

I am at the point once again where exhaustion is going to make me give up again. I so want this to work as I am sure I have severe sleep apnea but just can't get more than 2 hours in.

There's a steep learning curve with CPAP. But you CAN make this work. Attitude is vitally important here. You are going to have to put up with some embarrassment, discomfort, fatigue, frustration to win out in the end. It ain't no rose garden at first. But if you stick with it, you will be glad you did. Living alone with nobody to hear you snore also means there will be nobody to take care of you when you have that heart attack or stroke because of untreated apnea. So failure with CPAP again is NOT an option. Hang in there.

[sleepychar]

I am in my 4th month of CPAP use so others here will have much more information for you. But I wanted to share my experience because I also had very severe dry mouth when I used a nasal mask - in my case, the P10 nasal pillow mask. I tried chin strap and mouth taping to no avail. I didn't want a full face mask but finally I gave in and tried one - well two, actually. First I tried the Quattro Air and it was ok, although I knew I would prefer a mask that was not quite so "full face" if possible. But it did help alot with the dry mouth situation. Now I am in about the third week of trying out the Amara View mask which kind of sits just under the nose and covers the lower portion of the face including the mouth. It has taken quite a bit of effort to get it adjusted so it doesn't leak but I think I finally have that part worked out and I like the Amara View mask very much now. Now that I have the fitting figured out so it doesn't leak, it seems to leak less than the Quattro Air mask and stays put better. Everyone is different so you will need to try and figure out what mask will work best for you for yourself. I am a side sleeper also. I have seen others here write that sometimes a chin strap is still needed even with a full face mask but that hasn't been the case for me. I am rarely experiencing dry mouth now. I guess the theme of this message from me is to not give up and perhaps try a full face mask if you haven't done so already. Especially in the beginning, it may be easier to adjust to than a nasal mask; at least that has been the case for me. The other thing is that it takes a lot of patience to get through the period of figuring out how to adjust a mask on your face for the least leakage and most comfort. Although I am liking the Amara View now, by about the third night of using it I was so frustrated that I almost gave up on it. There are videos that will demonstrate how to position a mask on your face and other members here can also make suggestions for you. So try to hang in there and remember - your patience will be tested but you will be happy once you get past the early struggles.

[Guest]

I so want this to work as I am sure I have severe sleep apnea but just can't get more than 2 hours in.

You are in the right place. But this is not easy and will take some reading and learning on your part.

When I first came here I was also a mouth breather. As mentioned above you have to remain conscious of how you are breathing while awake as that is what you will "default" to when sleeping. You can try using a sports mouth piece (guard for teeth) to see if that helps you keep your mouth shut. If you are like me it will also make your mouth water and that helps with the dry mouth.

Also use the pillow tucked up under the chin and keep sleeping on your side as mentioned. Start for bed about 30 min early to take care of the things that are new to you. Keep a journal to write things you will need to work on before bed. Sleep with the mask and cpap just as long as you can and go back to sleep if you have to take the mask off. Use Sleepyhead to track your time and results. Your time should increase as you go on and leaks go down along with AHI.

With determination and reading you can do this - I did.

[Julie]

JBankson - have you ever tried a soft cervical collar? It keeps your head up (vs buried in your chest and bedding), your airway more open and your jaw (if not lips) more closed. Many people have found it effective and you sound like a good candidate. You'd still need to wear a mask of some kind, but your choices may be easier. And why try to sleep on your back - we usually advocate not doing it as it encourages more apneas and worse snoring.

[PEF]

I have been using PAP for just over a year now. It has been an extremely difficult process for me, for several reasons, but I would never give it up. One of my issues is that I was a really persistent mouth breather and I have a face that almost no FFM will fit. I think the suggestion about the Amara View, if you decide on an FFM, is a really good choice because it is the only FFM that I can sleep with at all. By all accounts, it will fit anyone. And it is minimal for an FFM. It also seals really, really well.

Chin straps and cervical collars did not work for me because I have a delicate jaw, but may work for you.

However, my only choice in the end was to stop my mouth breathing because I would wake up in the morning so often with terrible sore throats, dry mouth so bad I couldn't even swallow, and a stuffed up nose. My ENT told me that was what I needed to do whatever it took. Early on, while struggling mightily through the night with my nasal pillows mask, I practiced during the day with a strip of tape vertically over my mouth to remind my brain to keep my mouth closed. After a few weeks, I began taping at night, but not aggressively, just a thin strip to see if I could get used to it. There are a lot of non-PAP users out there who have problems with mouth breathing at night. They tape their mouths to train themselves not to mouth breathe and to optimize their sleep benefit. So you are not alone. Micropore paper tape is a good choice.

So I taped most nights for about a year until I was just so used to keeping my mouth closed and breathing through my nose that I did not need it all the time. I only go back to it once in a while if I have more leaks than usual for a few nights.

Everyone is so different and so many of us have tried many, many different things before finding success, so don't give up!

[D.H.]

I don't know for sure, but I think that your mask starts leaking when you change positions. You need to find a mask to accommodate your sleeping position, not the other way around (even though that works for me).

[chunkyfrog]

If someone told you to sleep on your back, they are DEAD WRONG.
If the pillow dislodges your mask, try a different pillow.
If the mask is a poor fit, try different masks.
Pad a Cheek makes soft fleece mask liners that help many people with comfort and face farts.

[jbankson]

Thanks to all who have replied. I am going to stick to it this time which is why I researched for user forums. Support is always a good thing and even "in your face" advise is often needed.

My largest victory in life has been when I quit smoking. I was a 2-3 pack a day smoker and was never able to quit until "I" made it my mission. I was then able to stop cold turkey with nicotine patch for a week or so only.

That was 10 years ago and if I was able to beat that can beat anything. I am going to do more research and keep reading but thanks to all who replied. I see I am far from alone and that giving up is NOT an option this time.

Jeff

[Okie bipap]

Congratulations on quitting smoking. I know the struggle well. Like you, I too was a heavy smoker and smoked about the same as you. I now have asthma which may or may not be linked to my smoking days. I do know that smoke is one of my big triggers for asthma attacks. Adjusting to cpap is not an easy task, but it can be done. The first time I was diagnosed with sleep apnea, I opted for surgery in an attempt to avoid the horrible machine. The machines then (1996) were much different than they are now. It took about a year, two different doctors and four sleep studies, but I am fully convinced I need to use this machine every night if at all possible. So, welcome to the club we have all joined reluctantly.

[OboeVet]

For me, it was having the DME (Sleep Data) and the sleep doc (Dept. of Veterans Affairs ... love that name review the data from my chip. They brought down my upper pressure so the leaks and AHI went down, and raised the minimum up so I stopped waking feeling like I was suffocating. Also, Fischer Paykel Simplus mask allows me to sleep on my sides, without cranking the straps down too tight.

For 3 years now I feel like my life has started over. Don't give up! As others pointed out, your sleep team is not serving you well.

Sent from my SAMSUNG-SM-G900A using Tapatalk

[EveOett]

Hi Jeff:

Just a few words of encouragement. It took me literally weeks if not months to adjust when I started 1 1/2 years ago. I was in the severe category also (65 episodes/hour, pressure 14).

There was no magic answer to the adjustment. The best advice I got was to use the machine while awake (while watching TV in bed, reading, relaxing). I did this night after night. My breathing started to feel more normal with the CPAP. The next best piece of advice was to avoid lying on my back altogether, since it made me feel as if I were choking. You don't like sleeping on your back anyway, so that's a plus.

I've adjusted to the nasal pillow and find it to be the least invasive - if possible, you should try to stick with it! The initial dry mouth problem ultimately subsided and I was able to maintain the "seal" with my mouth closed. I just developed the habit over time.

All of this is my personal experience, of course, but you might find it helpful. When I finally acclimated to the therapy, the results were astounding. I hadn't realized the extent of my sleep deprivation and how it detracted from my daily life. I hadn't felt tired during the day either, but rather was anxious, moody, and forgetful. I couldn't get up in the morning without two alarm clocks and three cups of coffee! Now I sometimes wake up before the alarm goes off.

Its definitely worth it! Please hang in there and good luck to you. Be healthy and well.
Best,
Eve

[Jim C]

While I am new to the cpap. Many years ago long before I ever heard of sleep apnea, I often woke myself up snoring or would start snoring just before falling asleep and realized my mouth was open. So I started clenching my teeth at night when I went to bed and was able to train myself well enough I stopped snoring this worked for a few years, I eventually fell out of it.
However, I recently (2wks ago) started using cpap nasal pillow and have now trained myself again and not having any issues with it.
On a side note the technician that set me up with the machine recommended to start using the machine about 30 min prior to going to bed while watching tv, etc. and that would train you to keep your mouth shut. I didn't find this necessary.

[yaconsult]

I agree with the suggestion to use the machine while you are awake and doing something else distracting, like watching a movie or surfing the net. It can make a huge difference in getting comfortable with the machine. Also, what are your pressure settings? If the machine was left "wide open" at 4-20, it does not provide enough air to breathe comfortably when you are awake. You may need 6 or 7 for that?

We are all different. Through years of experience, I know that a minimum pressure of 13 is what works for me. When the machine doesn't have to increase the pressure from lower than that a lot, it is able to treat apneas much more effectively. You will have to experiment and find out the best settings for you and the experienced users will be able to help you with that.