Could a Pulmonologist be my next step?

[Slim46Galw/apnea]

I am on my second attempt to use my CPAP machine. In 2008, I was first diagnosed with moderate to severe sleep apnea after spending two nights at our local hospital's sleep lab. I was prescribed a CPAP machine with a setting of 13. I tried for about 2 months to successfully adjust to both the powerful air and the uncomfortable mask. To no avail, I gave up. After consultation with my PCP, dentist and oral surgeon, I elected to have genioglossal chin advancement surgery in Nov. 2009 to move my tongue forward a bit to help prevent my tongue from covering the back of my throat as I slept.

I underwent another sleep study in December 2010 to find out if the surgery helped my apnea at all or not. Fortunately, the surgery did help a bit and my pressure was reset to 10. I am a 133 pound woman with a very small body frame so even a pressure of 10 is a bit overwhelming for me. But I am determined to use the CPAP for a good night's sleep.

One of my major issues is sleeping with my mouth open. I have tried a chin strap... no luck at all. I even taped my mouth shut with sports tape... it sorta worked but I awoke with horribly chapped lips. And I always had a fear , while sleeping, that I would choke to death with that darn tape on.

So, overall, I am not successfully using my CPAP machine. I really want to get a good night's sleep!

I am using the FITBIT to track my sleep patterns and in 8 hours (without the CPAP), I average 3 hours of sleep! Not good! (http://www.fitbit.com)

So, a friend suggested I meet with a pulmonologist for other ideas to help my sleep disorder. Has anyone else used the help of a pulmonologist? Medication? All help is greatly appreciated.

[Lizistired]

Since the fitbit only uses motion, it must make assumptions about how long it takes you to fall back to sleep. Does the device or the site show you any graphs or details of your night other than the breakdown you linked?

[Pugsy]

How about trying a different type of tape? I used the blue painter's tape and it is super easy to remove without taking skin off. They make a "Delicate" blue painter's tape even easier to remove without harming lips. Sports tape is pretty strong isn't it?

I have no idea what a pulmonologist might offer to make it easier to use the cpap machine unless you could get him to let you try a BiPap machine which would offer more exhale relief than you can get on the S8 machine.

If taping scares you and you have enough mouth breathing issues to impact therapy negatively, then the other choice is a full face mask. Of the full face masks I have always thought the Innomed Respcare Hybrid the less intrusive.

I did tape for about 2 months and then I quit taping. I seemed to have broken the open mouth habit.
I don't have any nasal congestion issues that force me to breathe through my mouth though.

[squid13]

If you tape put chap stick on your lips before you put the tape on. The tape then will not stick to your lips.

[Kairosgrammy]

What you really need is a mask that works for you. If you are a mouth breath and chin straps don't work for you, then you probably need a full face mask (ffm). Go to your dme or you sleep doc and insist on trying other masks. I started with a nasal mask. Didn't work for me. I now use pillows with a chin strap. I am a mouth breather but the chin strap works for me. Be agressive. I've been fortunate, my sleep doc and my dme's respiratory therapist have been more than willing to work with me to make all of this work. You might also need to turn your humidifier up if you have problems with nasal congestion. I really think it was the nasal congestion that made me a mouth breather. More humidity will help if you have that problem. Perhaps you would benefit from a dental device. REally, a pulmonologist might help but only probably because he'll insist on these kind of changes. Unless you have copd or ashtma or another respiratory condition, I wouldn't think a pulmonologist could do anymore than sleep doc or dme respiratory therapist.

I am on my second attempt to use my CPAP machine. In 2008, I was first diagnosed with moderate to severe sleep apnea after spending two nights at our local hospital's sleep lab. I was prescribed a CPAP machine with a setting of 13. I tried for about 2 months to successfully adjust to both the powerful air and the uncomfortable mask. To no avail, I gave up. After consultation with my PCP, dentist and oral surgeon, I elected to have genioglossal chin advancement surgery in Nov. 2009 to move my tongue forward a bit to help prevent my tongue from covering the back of my throat as I slept.
I underwent another sleep study in December 2010 to find out if the surgery helped my apnea at all or not. Fortunately, the surgery did help a bit and my pressure was reset to 10. I am a 133 pound woman with a very small body frame so even a pressure of 10 is a bit overwhelming for me. But I am determined to use the CPAP for a good night's sleep.

One of my major issues is sleeping with my mouth open. I have tried a chin strap... no luck at all. I even taped my mouth shut with sports tape... it sorta worked but I awoke with horribly chapped lips. And I always had a fear , while sleeping, that I would choke to death with that darn tape on.

So, overall, I am not successfully using my CPAP machine. I really want to get a good night's sleep!

I am using the FITBIT to track my sleep patterns and in 8 hours (without the CPAP), I average 3 hours of sleep! Not good! (http://www.fitbit.com)

So, a friend suggested I meet with a pulmonologist for other ideas to help my sleep disorder. Has anyone else used the help of a pulmonologist? Medication? All help is greatly appreciated.

[So Well]

What you really need is a mask that works for you. If you are a mouth breath and chin straps don't work for you, then you probably need a full face mask (ffm). Go to your dme or you sleep doc and insist on trying other masks.

Ditto.

Seems I have read on here that some DMEs have a 30-day trial - if the mask doesn't work return it and get another one at no additional charge. That is a great program and the OP should be trying FFMs until she finds one that works.

I agree with Pugsy about the Innomed Hybrid. Since the OP is already using nasal pillows the switch to Innomed Hybrid may work well.

I like this part:

But I am determined to use the CPAP for a good night's sleep.

I like people who are courageous and determined in the face (full face maybe?) of difficulty.

(Sorry about the bad pun.)

[Slim46Galw/apnea]

FITBIT tracks my sleep patterns every night. Here is an example of the daily report I get via Computer:
You went to bed at 10:40PM
Time to fall asleep 27min
Times awakened 13
You were in bed for 6hrs 27min
Actual sleep time 2hrs 44min

[Mary Z]

Sounds like your problem is being able to use the machine, not your choice of doctors. You may need a FFM .I use the FitLife Total Face Mask and though it is formidable looking it is the most comfortable mask I have found. Please make a decision to use the machine this year. We can help you work through each problem. You get used to the pressure in a short time. It's up to you to make a commitment and do the work in order to use the machine.
Unfortunately using the machine does not guarantee a good nights sleep. Brush up on your sleep hygiene to improve your sleep.
Good luck, keep us posted.

[robysue]

I underwent another sleep study in December 2010 to find out if the surgery helped my apnea at all or not. Fortunately, the surgery did help a bit and my pressure was reset to 10. I am a 133 pound woman with a very small body frame so even a pressure of 10 is a bit overwhelming for me. But I am determined to use the CPAP for a good night's sleep.

I'm genuinely tiny (5'1'' and 107 pounds) so I have some understanding about how pressure can feel overwhelming. My first titration study resulted in a prescription for 9cm, which I was never able to tolerate. After reporting many, many pressure related problems to the PA in my sleep doc's office, she authorized a week or two of an apap trial to "confirm" whether I really needed that much pressure or whether it would be possible to reduce my pressure. Turned out that during the autotitration period my 95% pressure level was just under 8cm and my median pressure was something like 6.5cm. She first switched me to an APAP with a 4-8cm range. While that was easier to tolerate than the CPAP at 9cm, I still had real problems with aerophagia as well as a nasty case of growing CPAP-related insomnia. After that the PA recommended a switch to BiPAP. The first titration study came up with a pressure setting of 8/6, which worked a bit, but I was still having really bad aerophagia at times. Yet another titration study resulted in my pressure being reduced to 7/4, but that turned out to be a really good night as far as apnea was concerned, and it wound up not being enough pressure all the time. (Sometimes it was fine, sometimes it wasn't). So now I'm using an Auto BiPAP with a range of min EPAP = 4, max IPAP =8 and have very little problems with the pressure anymore and the apnea is well under control.

I mention all this because I think it would be worth it for you to spend some time sorting out exactly what you mean when you say "a pressure of 10 is a bit overwhelming for me". Once you can more clearly articulate what problems you are having with the prescribed pressure level and how/why you are still not sleeping well in spite of trying to use the CPAP, then it's time to talk to the sleep doc or a PA or nurse practicitioner in the sleep doc's office about your current problems. It could be that you could wrangle out an authorization for a week or two of autotitration to see whether you really do need that much pressure on a nightly basis. And also get some comformation that the OSA is indeed under control at 10cm or whatever the 90% or 95% pressure level winds up being.

Unfortunately your current machine gives you no useful data if I recall correctly, including leak data. Hence a trial run on an APAP might also give you a week or two of useful leak data to find out just how bad your leaks actually are. It could be that they are not as bad as you think they are. But if you really are a mouth breather and chinstraps don't seem to help, then you will need to start doing some mask shopping for a FFM. You might want to do some mask shopping regardless. It could be that a chinstrap might work better with some nasal masks or nasal pillows than others for you.

And if you can identify other reasons that you feel that "a pressure of 10 is a bit overwhelming" then start posting those problems here too. You will get help because no matter how bizarre you think the problem might be, somebody on here has likely faced the same problem before and has managed to figure out a way to deal with it.

Best of luck in figuring out what your problems are so that you can start addressing them one at a time.

[DavidE]

Hi, Slim46. I'm sort of surprised you haven't already been seen by a pulmonologist or two. My sleep lab is part of the large, local hospital, and the docs at this sleep center are all pulmonologists. I, too, am a mouth breather, and for five years, I used a CPAP nasal mask and chin strap. When I began with CPAP, I was told that I'd learn to keep my mouth shut. I never did. Just recently (why did I wait so long), I switched from a nasal mask to a "full face" mask, the ResMed Quattro which took care of my mouth breathing since it covers the nose and mouth. However, it also made painful, red sores on the bridge of my nose. Just a few days ago, I made another mask switch to a Respironics FitLife total face mask which shows every sign of being the solution to both red nose and open mouth. This one covers the nose, mouth and eyes to just above the eyebrows, and it's no more "confining" than the full face mask as far as feel. Hope this helps some.






new machine: ResMed S9 Elite with H5i humidifier
new mask: Respironics "FitLife" complete face mask

[Slim46Galw/apnea]

I do use a full face mask, but it hasn't helped keep my mouth closed during the night. At the sleep lab, the technician told me I could not use the nasal pillows since I breathed too much through my mouth. He explained that over time I may learn how to stop breathing through my mouth to gain much better results with the CPAP.

I attempted to use a chin strap for about a week, but it never seemed to 'hold my lips together' enough to prevent my mouth from opening up.

The tape worked but I always had a little anxiety hanging over me just thinking about the "what ifs" during the night. And the skin chafing wasn't tolerable either!

No one at the sleep lab ever mentioned meeting with a pulmonologist. My best friend, who also suffers from sleep apnea, suggested this to me just last week.

Tonight I am going to once again try tape! Wish me luck!

[Julie]

The point of a FF mask is that you CAN breathe with your mouth open and not lose the Cpap air, so don't worry about that, only whether you have large leaks.

[wolewyck]

I taped for a while - don't need to anymore, but when I did, I liked the 3M Micropore tape. It's a medical tape, which made me feel psychologically better than "painter's" tape, and it was gentle enough to not irritate my lips, at least for the period of time that I used it. That said, a FFM--if you can get one that fits--should avoid the need for tape altogether, since it doesn't matter if your mouth opens or lips flap with a FFM.

I know what you mean about fearing that you'd choke... one thing I did to help combat that was to always fold over one side of the tape on itself, so that it would be really easy to get that edge and take the stuff off fast if I wanted to.

[Slim46Galw/apnea]

So my typical night goes like this...
Put the full Face mask on without tape, feel no leaks and ramp up for 30 minutes. I fall asleep. After about an hour I begin to get dry mouth and wake up, lick my lips and try to fall back to sleep. Again, after another short sleep and tossing and turning, I awaken to a dry throat and mouth. And that process continues so that I am not getting restful sleep for a very long period of time. And then the 'air/gas' circus begins. My stomach feels like it is a balloon! I wake up again and again to "toot' out that darn air! Anothe reason for not sleeping! Ugh.

So is it my mask, mouth breathing or other reason?

[robysue]

So my typical night goes like this...
Put the full Face mask on without tape, feel no leaks and ramp up for 30 minutes. I fall asleep. After about an hour I begin to get dry mouth and wake up, lick my lips and try to fall back to sleep. Again, after another short sleep and tossing and turning, I awaken to a dry throat and mouth. And that process continues so that I am not getting restful sleep for a very long period of time.

It sounds like you are breathing through your mouth with the FFM on. While the FFM allows you to breathe through your mouth without losing therapy pressure, it does not prevent the pressurized CPAP air from going through the mouth and drying it out.

So the first thing is: Do you have a humidifier? Do you use it? And have you increased the humidity setting up as far as it will go? If not, then that's the first thing to do: Increase the humidity as much as possible to minimize the CPAP air's ability to dry the mouth out when you open it up inside that FFM.

Second thing is: Even with a FFM, using a chinstrap (or tape) might help keep your mouth closed a bit more and help keep the mouth from getting quite so dried out.

Another thing to try that may be more satisfying than lip licking is to keep some water in a water bottle on your bedside table. And take the mask off and drink enough water to soothe the mouth when you wake up. That will "fix" the dry mouth problem in a much more satisfactory way than just licking your lips does. Which should allow you to get back into a more satsifying sleep than just licking the lips is currently doing. (I can't think of many things more irritating than lying in bed with a dry mouth and trying to get back to sleep without actually addressing the thirst issue.) And so even with the trouble of unmasking and remasking, you might just spend a lot less time awake (overall) if you'd allow yourself the chance to get a real drink of water the first time (and the second and the third) that you wake up with a dry mouth.

And then the 'air/gas' circus begins. My stomach feels like it is a balloon! I wake up again and again to "toot' out that darn air! Anothe reason for not sleeping! Ugh.

I think it was Deltadave who posted a while back on how frequent arousals can lead to frequent swallowing which leads to aerophagia which leads to more arousals which leads to more swallowing which leads to more aerophagia. A truly nasty cycle to get trapped in. (I know; I spent many a long night dealing with frequent arousals and aerophagia in the beginning myself.) If you can manage to wake up less with the super dry mouth in the first place, then that might go a long way in helping the aerophagia that follows.