Newbie - Just Registered this AM

[Streaming Bob]

Just started this journey on 13 April and found this site several days ago and decided to join.
Before I started the BiPAP I was sleeping good ( 8 to 9 hours a night) and waking rested. I did not fall asleep or feel tired during the day like my doctor said a lot of you do. I went for my sleep test because my wife said that I snore and stopped breathing during the night. My test came back that I had sleep apnea and needed a BIPAP. ( my number is 40 what ever that means. So much information in a short time. I am sure the doctor told me) So here I am. I wake up several time a night with dry mouth and the mask has risen up on my nose and I a getting air in my mouth. I have had the humidifer set on different setting and I know it must be working because the water level is down in the morning. I tried tighting the straps but waking up to sore face and jaw is not good. I have talk to the provider and doctor and continue to work with the mask and device. I am thinking I need a bigger mask or a different mask. I breath through my mouth most of the time. Now I am tired during the day and find myself dreading going to bed and the mask. Any suggestion would be welcome.
BOB

[Sheriff Buford]

Welcome! Mask shopping is normal. I can say that I have never heard of anyone getting the "right" mask the first time. I am a mouth breather too. Your 40 is probably you AIH reading. A 5 cm. H2O is a target, with 3.0 cm H2O being excellant and less than 3 is great. This site will educate you alot and there are some great folks here.

Sheriff

[robysue]

Welcome to the forum.

Like you, I didn't have any noticeable daytime symptoms of OSA and went for the sleep test only because hubby said I snored and sometimes stopped breathing in my sleep, which alarmed him. And I definitely felt like I slept much better pre-CPAP/APAP/BiPAP for several months after I started sleeping with the mask on my nose. There is a steep learning curve for some of us and if we're essentially asymptomatic in the daytime, there's significantly less immediate positive feedback in how we feel during the daytime. But we still need to try to make the therapy work as well as possible since there are real health concerns associated with OSA even if we are asymptomatic. As an analogy, most folks with high blood pressure are essentially asymptomatic when diagnosed, but that doesn't mean they don't need to treat HPB. Same kind of thing with OSA.

The 40 number most likely was your AHI---it indicates that on average you were having significant problems breathing 40 times each hour. Where a significant problem with breathing is either an apnea (you stopped breathing altogether) or a hypopnea (where the air going into your lungs decreased significantly below what it had been just a few breathes earlier.)

As for what to do:

You write:

I wake up several time a night with dry mouth and the mask has risen up on my nose and I a getting air in my mouth. I have had the humidifer set on different setting and I know it must be working because the water level is down in the morning. I tried tighting the straps but waking up to sore face and jaw is not good. I have talk to the provider and doctor and continue to work with the mask and device. I am thinking I need a bigger mask or a different mask

Tackle those mask issues. Until you've got the mask and leaks under control, everything will be more difficult. You need to make sure that you're not OVER tightening the straps on the headgear: Counter-intuitive as it sounds, that can make the leaks worse. I'd suggest posting a new thread with the title: Newbie needs help fitting the Quattro™ FX Full Face CPAP Mask and then you'll be sure to get some quality feedback on what you can try for the mask issues.

You also write:

Now I am tired during the day and find myself dreading going to bed and the mask. Any suggestion would be welcome.

Dreading going to bed is a significant negative development in your overall adaption. I know since I've been there and done that. My advice is DO NOT IGNORE THIS PROBLEM. Report this problem to your sleep doctor's office. Yes, it's likely that the first time you report it, all they will say is, "Give it more time". But be persistent and tell them you want help in keeping this from becoming a full blown case of insomnia.

As I said, I've been there and done that: Dreading bedtime was one of the first signs that I was developing a pretty severe case of what I refer to as CPAP-induced insomnia. I tried to ignore it. And I tried to simply do what I'd done in the past to pretty well manage my previous bouts with insomnia---which helped some, but did not really "fix" the problem. And as my daytime fatigue grew and my dread of bedtime increased dramatically and my discomfort with the hose did not decrease (it usually does), my insomnia grew fat and strong. And at the end of three months of therapy, I was willing to admit to the PA in my sleep doctor's office that my daytime functioning problems as well as my nighttime problems were due as much or more to the insomnia (which was now feeding on both CPAP and non-CPAP issues) and that I could not deal with the insomnia on my own. She'd previously suggested that I needed to work harder on two or three insomnia-related behaviors by paying a bit more attention to my already very good sleep hygiene, but I'd resisted making those changes earlier since I'd never needed them in past (largely successful) battles with insomnia.

At the end of month three, the PA designed a behavioral therapy approach for me to fight the insomnia since I was not interested in taking prescription sleeping medication every night. It's a long term approach and it's required a lot of work. I started noticing slight improvements in the insomnia by the end of the first month or so of this work and the improvements have continued at a slow and steady pace with some setbacks. I'm now usually getting around 5 1/4 to 5 1/2 hours of sleep when I'm in bed for about 6 hours. And now that the insomnia is under control, I've even noticed some subtle changes in how I feel when I wake up that I do believe are attributable to the BiPAP. A lot of the first six months of my journey and the subtle improvements I've started to feel with BiPAP are detailed in 1000th post: Update on my insomnia and xPAP therapy.

And if you'd like lots more tips on trying to fend off the insomnia before it starts to grow into a full fledged monster, just let me know.

[Streaming Bob]

Robysue and Sheriff - Thanks for your thought. I am seeing a new Resp. Tech this afternoon. She said to bring all my gear and she is going to help with the fitting.
I think if I get the mask to work and a don't keeping waking up with the dry mouth I will be able to sleep thru. I take an over the counter sleeping pill and I don't have much trouble getting to sleep.

The Doctor said the people have heart problems with sleep Apnea but I have been unable to find how bad sleep apnea is related to heart problems. My quality of life has gone down with the biCAP . I need to keep trying to get this thing working or I will be back snoring and keeping the wife awake listening to me stop breathing.

It is hard for me to accept that I have to use this for the rest of my life.
Bob

[SleepyT]

.... I take an over the counter sleeping pill and I don't have much trouble getting to sleep....The Doctor said the people have heart problems with sleep Apnea but I have been unable to find how bad sleep apnea is related to heart problems....It is hard for me to accept that I have to use this for the rest of my life.
Bob

Bob...several things. First, make sure the sleeping pill you are taking doesn't screw up your sleep architecture. Your sleep doctor will be able to tell if the one you're on is ok. As far as the heart problems go...sleep apnea is surely tied to it. You're not getting enough oxygen in your blood while sleeping...and this has an impact on ALL your major organs...heart included. Lastly, I don't think it is too far of a jump to say each of us can relate to your trying to accept the notion of CPAP for the rest of your life. Getting over that hump may well be the hardest part of it. Give yourself time on that one. And best of luck to you. Glad you found us.

[robysue]

Robysue and Sheriff - Thanks for your thought. I am seeing a new Resp. Tech this afternoon. She said to bring all my gear and she is going to help with the fitting.
I think if I get the mask to work and a don't keeping waking up with the dry mouth I will be able to sleep thru. I take an over the counter sleeping pill and I don't have much trouble getting to sleep.

Seconding SleepyT's suggestion that you talk about the OTC sleeping pill with the sleep doc. Some of them can mess with sleep architecture.

And watch that budding insomnia: If it does NOT start to resolve with the tips the new RT gives you about fitting the mask today, DO NOT IGNORE IT.

The Doctor said the people have heart problems with sleep Apnea but I have been unable to find how bad sleep apnea is related to heart problems.

There is a correlation. Have you ever been diagnosed with any kind of heart disease before? Have you any symptoms of heart disease? Is your PCP worried about your having heart disease? If the answers to all three of these questions is NO, then I'm not sure I'd get in a tizzy about this (yet).

But that's because I don't believe everyone with an OSA diagnosis automatically has some kind of heart disease: A higher than average chance of developing it if the OSA is left untreated, sure. But some of us don't have O2 desaturation problems at the time we're diagnosed. And I am convinced some of us are diagnosed rather early before the OSA has done much damage to our bodies---most likely because we listened to a spouse saying "You snore and stop breathing and I'm worried."

My quality of life has gone down with the biCAP .

Be sure to write down (ON PAPER) the specific WAYS in which your quality of life has gone down with starting BiPAP. And share that written list with your doctor's office!. If you let the doctor, PA, or nurse who meets with your for your follow ups know specific details about what's going on and how the BiPAP is negatively affecting your life, the less likely they are to simply pat you on your head and say Give it more time. Give 'em specific examples of how your life is going down hill and they will come up with some ideas on addressing at least a few of the triggers for those problems.

And watch that budding insomnia: If it does NOT start to resolve with the tips the new RT gives you about fitting the mask today, DO NOT IGNORE IT.

It is hard for me to accept that I have to use this for the rest of my life.

Take it ONE NIGHT at a time. Each night focus on TONIGHT and worry about tomorrow night and the night after tomorrow night and the night after that once they get here.

[Sheriff Buford]

Bob: funny you should say that "it was hard to realize that you will be wearing tha mask the rest of your life". As I was putting my mask on this weekend, I had the same thought. Though I feel so much better, my diabetes has gotten better, I've lost weight and most of all, I feel sooooo much better, it did occur to me that I will be a "hose-head" the rest of my life. I wouldn't go back for anything, but it's very strange feeling and I don't have an answer.

Sheriff

[Hosehead4ever]

Hi Bob, I'm pretty new here too - only been a hose head a little more than two weeks. First of all, you will find the people here both welcoming and a huge font of knowledge. They have helped me a lot in my very short time on this journey. I'm having problems with it myself, but I actually look forward to going to bed because I have the attitude that it gives me another opportunity each time I sleep to try to figure out what's going wrong that I can fix.

One thing I'll suggest is that you don't take too long to try to make that mask work. Most DME's, from what I've read here and from my own experience with Apria, are supposed to give you 30 days to switch to a different mask. So if that mask doesn't work, try a different one. If the quattro fx doesn't work, try the mirage quattro. Or try a hybrid mask that has pillows for the nose and a full mask over the mouth.

As for the dry mouth, if your humidifier on your machine isn't doing enough, try running a room humidifier (I use a cheap Vicks humidifier from the drugstore) beside your machine so the air it is taking in already has higher humidity. Also, a hose cover like the snugglehose might help with that. Lastly, I think there is something called Bioteen that is a gel that people put a tiny bit in their mouth and their mouth stays moist all night. It's for people that have chronically dry mouth and is available over the counter.

Hope that's been of some help and welcome to the forum!

[Streaming Bob]

Well I saw a new Resp. Therapist yesterday afternoon and really like her. I am going to change my company to where she works. She had me try on several masks and has loaned me the Fisher & Paykel FlexiFit 431 full face mask. I wore it last night. I also did not take my sleeping pill as recommended by her. The mask felt good at first but later in the night I started to rub. Its amazing I did not have the dry mouth. I am sure it was the sleep pill that was giving me that problem. About 2 am. I change back to my FX mask and it worked for the rest of the night. I did sleep fairly well. Thanks for the help on the board and concerns.
Bob