When To Throw in the Towel

themonk · Post by **themonk** » Mon Jun 25, 2012 7:39 am

Howdy everyone!

I was diagnosed w/ moderate apnea in May of this year, with 24 hypopneas, 0 apneas, oxygen avg at 95%, 0 minutes below 90%. I was somewhat shocked to be diagnosed as I didn't have any of the normal markers - in my 30's, no snoring, no waking up gasping, no high blood pressure, smallish neck (13.5"), healthy weight/very fit, etc. I actually scheduled my initial visit to discuss using CBT to get to sleep faster, which has been an issue for me for a long while. So it has been quite a whirlwind - from 'healthy' to moderate OSA in a few weeks.

I decided on CPAP because it seemed to be the very best at actually treating OSA. I toyed w/ the dental appliance but the cost was high and it was apparently a crap shoot as to whether it would work. I just wasn't prepared to take a 3k gamble!

I got my machine on June 20th. To be honest, I am not having a lot of issues w/ the actual machine and mask. I feel comfortable breathing against the 15 cm/h2o of pressue and I use a nasal pillow mask that is very easy to handle for me. I actually enjoy the humidified air and it seems to help w/ my mild allergies.

However, I am quite literally not sleeping more than a couple of hours each night, spread throughout 8 or so in bed. I have two issues, apparently common, but which are keeping me from getting to sleep and staying asleep.

#1 and the biggest is the 'fast balls' of air going from the back of my throat and around my gums which blow up my cheeks and eventually my lips. This happens about every 3-5 minutes when the mask is on and if I can get to sleep, usually wakes me up. I have tried all different kinds of tongue positions, sleeping positions, pillow configurations, etc. I just can't seem to get it to stop. If I could get this taken care of, I think I would be ok w/ PAP. Not really sure what else to try. Maybe a FFM?

#2 is aerophagia. I see conflicting advice on how to get rid of it - either sleep completely flat or bend your neck at an angle. I have tried both and not had luck. It isn't a major issue but I would love to deal with it. Maybe this will pass with time (no pun intended).

So my question is when do you de-mask for the night to get some rest, even if it is not great rest? At this point after 5 days of 2-3 hours of sleep, I am extremely worried about my health - mental and physical. Is it worth taking a 'day off' from the mask to get strength? When do you throw in the towel altogether and try something else as a treatment? As is probably the case with a lot of folks, no one showed me how to actually use the machine. I haven't enjoyed the best success at getting my questions answered by the support staff w/ my sleep doc so I kind of feel on my own. Seems like now that they got the $ from two sleep studies, I am left to figure things out by myself.

Thanks so much for all of the information on this site. It has been such a huge help to me so far.

sleepycarol · Post by **sleepycarol** » Mon Jun 25, 2012 7:54 am

The aerophagia should get better with some time. Ask your doctor if your apap could be set for a range of pressures. If so, it should help with both of your problems. If he doesn't agree there aways of finding out how to do it yourself with guidance from the forum.

nanwilson · Post by **nanwilson** » Mon Jun 25, 2012 7:59 am

You have only been at this for a short time....it takes patience and perseverence. The AHA moment doesn't happen immediately, you have had this disease for a very long time, so it will take you a while to get used to it all and not even noticing the machine and mask. Whenever you have questions ..just ask, there are MANY of us here that have not had any help from their doctor or dme
I found that the aerophagia just went away after I raised the head of my bed by 4 - 6 inches, same with the blowfish mouth.
Your brain doesn't want to have anything to do with this foreign thing forcing you to breath, once the brain gets used to the act of blowing air at you, things will settle down and you will have that aha moment.
Never take a night off, never stop using the cpap......imho its the only thing that is keeping me going.
Others will chime in soon and you will get a ton of advice on how to keep at this...in the meantime..WELCOME......
Cheers
Nan

themonk · Post by **themonk** » Mon Jun 25, 2012 8:09 am

Thank you Carol and Nan. I have a call into my doc and I will ask about APAP. Like I said, they haven't been all that great about responding since the last sleep study, but I'll keep trying!

I will also try raising my bed. I sleep with a very flat pillow so I wonder if maybe using a larger pillow would help, maybe stacking two smaller ones? I still believe this therapy will work for me. I am trying to stay positive!

Thanks again. This is such a great help. I wish sleeps docs educated patient with this kind of info. I suspect there would be better compliance rates if someone actually sat down with a patient in the fragile first few days/weeks and went over common issues.

retrodave15 · Post by **retrodave15** » Mon Jun 25, 2012 8:16 am

Don't give up, it is an adjustment to sleep with a cpap. You might want to try a different mask - I tried 6 different ones until I financially settled on my mask of choice. It is a lot of experimentation on finding what works best for you, it took me 2 months to get to my AHA moment and I have never looked back since. Once I figured out the mask, hose management, and the pillows, everything is great now. I will also say that sleep hygiene is important as well. I have a routine, I try to go to be each night a the same time, get up at the same time - including weekends. I also avoid caffeine after 2pm and adjusted what meds I take at what time of the day. For me it was working the individual problems that made up the overall bigger issue. Another big help for me was a sleep hygiene program I took through my employer's wellness program.

You might talk to you doc about a short term script for a sleeping aid such as Sonata. I did this for a while, but after a while I no longer need it an I now sleep almost through the night every night. This is from a man who woke up for what it seemed every hour on the hour.

BasementDwellingGeek · Post by **BasementDwellingGeek** » Mon Jun 25, 2012 8:43 am

#1 and the biggest is the 'fast balls' of air going from the back of my throat and around my gums which blow up my cheeks and eventually my lips. This happens about every 3-5 minutes

I encountered that same problem during my sleep study. I felt like Homer's buddy Barney with lip flapping belches, but was cause by air up my nose instead. The trick is tongue placement. Stick it to the roof of your mouth and experiment with the best placement. You'll soon find a place that prevents the Chipmunk Cheeks and subsequent lip flapping. Practice this position during the day and it will become more or less automatic in sleep.

Don't give up!

BlackSpinner · Post by **BlackSpinner** » Mon Jun 25, 2012 8:49 am

You might find a full face mask more comfortable too.

You just started. Your sleeping mind has spent years trying to keep you alive while you sleep. It isn't going to step down just because you stuck some strange object on your face. It needs to learn it is safe to sleep with that stuff on. Like with a 2 year old, you don't reward bad behaviour, you never take the mask off. It takes time to learn new habits. Do you play sports? Do you expect to learn a new game to perfection in 5 days?

Sloop · Post by **Sloop** » Mon Jun 25, 2012 9:02 am

I would steer clear of any prescription sleep aids -- ESPECIALLY Ambien. However, with you getting only 2 hours sleep a night -- you need to do something. I recommend that you try Melatonin. The Sublingual kind is the best for getting into your system fast. It WILL put you under -- naturally.

-tim · Post by **-tim** » Mon Jun 25, 2012 9:20 am

What pressure are you on? It might be too high or it may be combining with a machine feature to cause you grief.

chunkyfrog · Post by **chunkyfrog** » Mon Jun 25, 2012 9:21 am

A full face mask virtually eliminates the air pressing out the mouth, as it equalizes outside air pressure on the mouth and nose.
I have to physically keep my mouth shut while wearing pillows or a nasal mask (chin strap, chin-ups, etc);
but a full face mask lets me slam it on and drop to sleep very quickly. I alternate just because nothing is perfect.

themonk · Post by **themonk** » Mon Jun 25, 2012 9:33 am

What pressure are you on?

15 cm/h20. I was really hoping since I had no apneas and was a healthy weight it would be lower but no such luck. That is another concern about using the dental appliance, that with that type of pressure required, the appliance wouldn't be of much use. I haven't explored it so I don't know.

would steer clear of any prescription sleep aids -- ESPECIALLY Ambien

I have used ambien off and on over the past couple of years. It definitely helps me get to sleep. But you are correct, I really don't want to rely on it!

Do you play sports? Do you expect to learn a new game to perfection in 5 days?

I do, I actually box. Have for almost 15 years. I know it will take time and I am remaining very hopeful. I was really just trying to figure out when you get to a danger zone of no sleep at all or when you decide to look into other treatment options. I am 100% committed to treatment of some kind. I have a 2 and 4 year old and I want to be around for a long, long while. I take as good care of myself as possible with diet and excercise. Sleep has always been the issue and I am absolutely committed to fixing whatever is wrong, whatever it takes. I just don't want to damage my body/mind with not getting any sleep of any kind, but I understand getting used to the mask is kind of an all or nothing type of thing!

I am going to try sitting w/ the mask for an hour or so before I go to bed to see if I can figure out what is happening to cause the bubbles. I feel like my tongue is in the right place, but apparently not. I am excited to try raising my bed as well.

I also have a call into the doc so we can talk about FFM. I have to have a special prescription for them, which I didn't when I visited my DME. I was limited to just the nasal type masks. This is also a little test to see what kind of follow up my doc will do. Like I wrote, they are not the best about responding but hopefully they will take my concerns seriously and work with me, if need be.

Sir NoddinOff · Post by **Sir NoddinOff** » Mon Jun 25, 2012 9:51 am

I had your same two problems of chipmunk cheeks and aerophagia. I also am not overweight, am extremely athletic (mt biking) and eat right etc. I've found that over my first two months both problems started to fade away. I think my tongue finally joined the team a few weeks ago and now seems to stay in place. blocking air escape. I use nasal pillows but I still use a small amount of tape over by mouth. For tips type 'mouth taping' using this site's search engine.

Stick with it and I think you'll see the same results. Good luck.

themonk · Post by **themonk** » Mon Jun 25, 2012 10:15 am

SirNoddin, thank you. It is helpful to hear I am not alone and it definitely gives me renewed energy to keep at it.

I actually do tape my mouth after having horrible luck w/ the chin strap during my sleep study and the first couple of days at home. The tape has been 100% effective so far in keep my mouth closed. Not helping the other stuff, but one thing at a time.

I am 'practicing' keeping my tongue planted to the roof of my mouth during the day. Thankfully I don't have to talk a lot in my job so I can practice all I want. Hopefully this pay off over time.

-tim · Post by **-tim** » Mon Jun 25, 2012 10:18 am

themonk wrote:
What pressure are you on?
15 cm/h20. I was really hoping since I had no apneas and was a healthy weight it would be lower but no such luck. That is another concern about using the dental appliance, that with that type of pressure required, the appliance wouldn't be of much use. I haven't explored it so I don't know.

15 is going to be hard to get used to without something like proper ramping or exhale relief. Are you using them? Is your machine on auto upto 15 or cpap mode at 15?

The other thing to consider is most machines start at 4 and if your big guy, that may not provide enough air. I start mine at 5 and others here start at 6 or higher.

Can you download software and post some data graphs?

themonk · Post by **themonk** » Mon Jun 25, 2012 10:42 am

15 is going to be hard to get used to without something like proper ramping or exhale relief. Are you using them? Is your machine on auto upto 15 or cpap mode at 15?

I am not using the exhale relief and honestly don't know how. The DME just showed me how to turn it on and to clean it, not really how to use any of the features. I haven't seen my doc since the post-sleep study meeting. I don't have another appt until 7/30 and getting them to respond to emails or phone calls is challenging at best. Is this something I can set myself? Will I get in trouble w/ the doc or my insurance?

The other thing to consider is most machines start at 4 and if your big guy, that may not provide enough air. I start mine at 5 and others here start at 6 or higher.

I am not having too much of an issue w/ the pressure and at times have had to feel if it is still on during the night. I am not a big guy, 5'11"/180 lbs, but I did find that 4 was a little difficult during my titration study. Not sure how it would be now since I am more used to the concept of breathing w/ the mask. I haven't really used the ramp feature because I haven't really needed to.

Can you download software and post some data graphs?

I tried to get Sleepyhead to work but it would pull in the name of my machine but no data for the actual usage. I saw someone had posted the exact same issue either on this board or another one. Not sure what to do to fix it and haven't tried since last Friday. I might fiddle with it this week if I get a chance.

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