Just diagnosed and on ASV - PLEASE tell me things get better

[SpectreWriter]

This is a very good place for you to be.

Some of this has already been said. I find that I was well-guided to the Quatro mask. A friend loves his Gel, but I found it was too heavy and didn't like the way the frame put pressure on my forehead. Turns out, he uses the NASAL mask (like you initially said you have.) So that's another beast entirely.

I think you should try the Quatro. Your medical equipment people should be able to swap you out with a different mask, especially during this initial time. If you're not getting their cooperation, see if there's a Banner Medical in your area. Get onto a non-gel (again, the Quatro) FULL mask. That your wife is hearing you mouth-breath confirms that you need it. Get it adjusted properly, and don't be afraid to sleep on your side (I find that makes it more comfortable for me sometimes.)

Why do I suggest the above? You're bothered by the "stuff". Far as I know, Quatro is the lightest frame and mask around, the one least likely to bother you.
Don't know if you answered what machine you have yet. Be sure it has a humidifier, or you'll likely wake with a sore throat -- especially if you live in a dry climate.

It DOES get better... and then sometimes worse, as you get GOOD sleep and find that your body thinks you only need 5.5 hours of it and you're trying to get 8. But with a bit more focus on good sleep habits, that can improve as well.

Finally, since it's not an option, improve your attitude towards the CPAP. It is saving your life, quite literally.

Feel free to ask, complain, whine, bitch, whatever helps. We've been there.

[SleepPlease]

By "what issues now" I guess I should clarify...what issues related to how come you can't sleep with the mask/machine. What is making you think "bondage"

I think the feeling of bondage is both physical and mental. Underlying it all is the change of the nature of sleep from organic to technical. What I used to see as solace is now bound by limitations that feel extreme. One place and time. I must physically strap myself to a machine. I've slept on my side most of my life and can't really do that with this new setup, so I'm even further limited. Then there's the fear of opening my mouth. Not to mention the machine is deciding when I inhale and exhale. I have zero control over my body. At my age, to think that I'll have to sleep like this for the rest of my life is pretty devastating (at least it seems that way at this point).

This statement above lead me to believe that you had trouble falling asleep with the machine and of course the wake up at 4:30 means trouble staying asleep since you wake up and don't report being wide eyed and bushy tailed at that time.

I do have problems going to sleep on the machine. Without the machine it's a matter of seconds. With the machine, no matter how exhausted I am, it takes a good 30 minutes for me to fall asleep. I wonder if I should set that ramp to longer? My follow-up appointment is next Friday (5/23). I think I'm going to ask about a sleeping pill because so far I feel worse on this machine than I ever did before I got it. Maybe if I could get at least 6 hours of solid sleep with the machine doing its thing, I might be able to see a benefit.

[Pugsy]

I've slept on my side most of my life and can't really do that with this new setup, so I'm even further limited.

Yes, you can...you can still sleep on your side. Just have to figure out how to fit the mask, the bed pillow so that you can do it without the pillow pushing on the mask or frame.
You said "nose mask"...which one? Some are more conducive to side sleeping arrangements than others.
There are special bed pillows that allow for the mask to rest in a little hole so the bed pillow doesn't push on the mask so much.

There's no need for anyone to alter sleeping positions just because of a mask...it might be a challenge to get things sorted out but it isn't impossible.

Setting the ramp longer might help you get to sleep before the hurricane winds set in. Perhaps if you could get to sleep faster if you were able to return to your normal sleeping position.
I bet you are trying to sleep on your back so the mask won't move...is that correct? Sort of like sleeping in a coffin position? There's no need. I even sleep on my stomach at times. Always start out the night on my side.

The mouth opening thing. Don't stress on that for the moment. Once you get the software up and running we can look at the leak lines to get an idea if it is a huge problem affecting therapy or just a minor annoyance waking you up and then discuss options. I open my mouth during the night at times....some more than others Mouth opening can be a problem if it cause large prolonged leaking but 5 minutes of big leak isn't the end of the world. It all depends on how much and how long it is going on and how often it wakes you up. Since you say once you go to sleep you don't really remember waking up much until that 4:30 wake up...you must not be waking up often with it?

[bwexler]

If you are allowed to download SleepyHead software and install it on a computer at work, the software will tell you exactly which machine you have and what your settings are as well as how effective your therapy has been.
If not, you can do so when you get home.
Things will get better. I was lucky to adjust to my machines rather quickly.
The bright eyed and bushy tailed, not so much, yet.

[Pugsy]

Oh, I forgot...the appt for follow up.
If you still having significant going to sleep issues you can talk to the doctor about a RX sleep aid but I don't know how keen he will be on it with a history of centrals but it is worth talking to him about. Maybe short term to help you get adjusted would be acceptable. I don't know how effective they would be for the 4:30 wakening as most are designed for help getting to sleep and not necessarily staying asleep after that amount of time. I know Ambien CR has a controlled release and works more for help staying asleep than regular Ambien which is more for falling asleep. Not real familiar with the other sleep aids. This is something best left to a discussion with your doctor.

Your appt is relatively soon. If you had said June 30 I would have suggested trying to move it up sooner.

[SleepPlease]

If you are allowed to download SleepyHead software and install it on a computer at work, the software will tell you exactly which machine you have and what your settings are as well as how effective your therapy has been.

So you install that and import the data from your SD card? When I got my machine, they also gave me a paper with a website on it and an account they had set up for me, but I don't have that handy. I assume SleepyHead does similar analysis?

The bright eyed and bushy tailed, not so much, yet.

Yeah, I'm starting to wish the sleep people hadn't hyped this therapy so much. They should have gone the "it's saving your life" route with less "everything will be awesome!!!"

[Sir NoddinOff]

It took me a long time to get used to ASV. I don't normally mention how long because it will make people who are very impatient so discouraged that they will simply bail out... I don't want to contribute to that. Everybody is different, of course, but I don't think that there is one specific night where everything clicks, at least there wasn't for me. I see it as a gradual problem solving process that gets better over time (read months) plus there can be unforeseen setbacks. I recommend you simply stick with the ASV process, trust what people are relating and you will eventually get over the hump and be sleeping normally.

[bwexler]

The website you download to is mainly so they can if you are using the machine more than 4 hours a night to comply with insurance requirements so someone can get paid.

The information you download from the SD card is far more comprehensive and informative. It does tell you if you used the machine for complience, but that is not even the tip of the iceburg. It will tell you exactly what time you had apnea events, how many for how long and your average per hour ( AHI). It will show your breathing patterns and much more.

You will learn over time to read this info, with lots of help here. After 3 1/2 years I can understand about 60 to 70% of the info, which is more than most doctors or RTs. I am still learning as I read the responses to others questions or ask my own.

[Sir NoddinOff]

After 3 1/2 years I can understand about 60 to 70% of the info, which is more than most doctors or RTs.

I had to chuckle at this (kind of a sick chuckle, to tell the truth). You are totally right, bwexler... so many doctors and DMEs resist learning about ASV and even in some cases, BiLevel. They tend to think that once they've got you strapped into a auto CPAP you're good to go, regardless of what your SD card tells them. Four hours of compliance a night - you pass, cha-ching into the bank acct. Surgeons undergo almost annual reviews and retraining because they are on the cutting edge (no pun intended), but many sleep doctors tend to just coast along on stuff they learned in med school a decade or more past.

[sawinglogz]

It definitely does get better. I now have one bad night about once a month or less. (Tomorrow is my 1-year ASV anniversary, I think. I was a little foggy at the time.)

A few ideas based on your complaints:

* Try a full-face mask or hybrid. Opening your mouth isn't a problem with them. I use a Liberty (hybrid) for that reason. I didn't like the FFM because it leaked air into my eyes and made the bridge of my nose itch.

* Loosen the straps. Tighter is usually worse/leakier. Start with ridiculously loose, turn on the machine, and tighten it just enough to stop leaking.

* Check out mask liners. This was the big night/day difference for me. Instead of something grippy strapped to my face, I had soft cloth, just like a pillow.

Definitely a look at your detailed data will give you some clue as to why you're waking up. Could be pressure, could be leaks, could be a sudden jump in pressure to combat a central. When the machine really goes bananas, I usually wake up briefly, press ramp, and go right back to sleep.

If you find the machine getting out of sync with your breathing, I have a few tips.

I definitely know your feeling, though. I'm in my 30s and thin, so it's weird to have apnea. And you're right, there is a big sense of loss that something that was so easy and natural now requires a machine. Something that was a solace is now a chore. Eventually the whole mask thing gets to be pretty routine, which helps a lot. But I still do miss just lying down and drifting off however I happen to be.

That said, I was a shadow of my usual self when I wasn't getting any sleep. Being myself again is worth the hassle.

[Kiralynx]

SP,

One thing, first of all -- I'm a side-sleeper. Always have been, likely always will be. I currently use the Tap Pap nasal pillow mask, which works great. I also used the Respironics Comfortlite 2 and the Aeiomed Headrest mask, which were great for side sleeping, but which have, unfortunately, been discontinued. (Respironics discontinued my CL2. The Aeiomed factory burned down... it's a plot against side sleepers, I tell you! A plot!)

I bought one king sized side sleeper pillow and one standard side sleeper pillow and stack them on top of each other. This gave me a latering effect so I could figure out how to arrange me and the mask.

Back at the beginning, it was all hard. Now I climb into bed, hook my Tap Pap to the hose which I have hanging over the pillow, pop the mouthpiece in, and turn on the machine, then adjust the nasal pillows. I read for a few minutes while breathing with the machine, then turn out the light, and sleep.

In 2008, I came to this Forum for information about something which was totally new and very distressing to me.

I was freakin' scared. 2008 was not a good health year for me, with cancer surgery and a 24" incision to deal with. Now they wanted me to spend the rest of my life sleeping with some god-awful mask and hooked up to a glorified hair drier?

I was crying when I came out of the doctor's office after getting the apnea diagnosis. I cried even harder when I realized it was not just OSA, but Complex Apnea. It was just too freaking much -- I'm claustrophobic, and the idea of the d@mned mask was more than I could handle. So I came home and started to research.

Last year, I reached the five year mark on the cancer, and am now considered cancer-free, although I will always carry the emotional scars of the fear engendered by that diagnosis.

My apnea journey, though, actually began in June of 2002, after gall bladder surgery. I began waking up with severe hip pain at around 2-3 hours. I would get up, go to the bathroom, take some anti-inflammatory medication, and go back to bed, lying awake until the meds kicked in and the pain eased. Three hours later, I would be awake again, to repeat, and then 2-3 hours later, the alarm would go off.

When I mentioned the pain issues to my GP, I was told to stop stuffing my face and lose some weight, and it would all clear up. The fact that I had, at that point, lost around 70 pounds was irrelevant: clearly, I was lying about what I ate. It was made clear to me that I deserved to hurt. So I didn't mention my on-going exhaustion again.

Fast forward to 2008: I was tired all the time, falling asleep in my computer chair. I remember coming out of the rehab center where I did work for my knees, and looking across the parking lot at the sleep center, and wondering what it took to get a referral, since the GP had made it clear that if I would just lose weight, it would all clear up. My exhaustion was all my fault.

Then came the cancer diagnosis and surgery. (I had to get a second opinion on the cancer symptoms because when I presented them to the GP, his comment was to stop stuffing my face and lose some weight and it would all clear up. Needless to say, he is no longer my GP.)

In the hospital, even with loads of pain meds for the 24" incision, I was kept awake by hip pain. Worse, if I dosed off, an alarm on the oxygen would go off and wake me up -- and the nurse would come in and tell me I must have rolled on the tubing.

I actually healed very well and quickly from the surgery... but the PAIN would not go away. Finally, four months after the surgery, I was sent to a pain management specialist. She listened to my comments, including the part about being exhausted from lack of uninterrupted sleep -- I also mentioned the hip pain -- and sent me for a sleep study.

I made the comment that I knew the pain was disrupting my sleep... and the PM doctor stopped me right there, telling me that it was the other way around. That disrupted sleep was causing the pain. That the reason getting up in the middle of the night and moving around helped was because I was breathing again.

Well, I did have apnea, and I did need the ASV.

One thing I learned from this board was "The mask which works for me may not work for you" and "You may end up trying on a couple dozen masks before you find one which works well for you."

I got lucky -- the sleep center let me come up and try on several dozen the day of my titration. I got to try them under pressure -- and that was also when we determined I needed a Bipap. I was able to find one which worked for me that day.

But I still had to find something to keep my chin shut, because my claustrophobia kicked in when I tried most chin straps. That was how I invented my Brandy Keg.

Then I had to convince myself to sleep with the darn machine. Long hair and mask straps are a pain. Long hair, mask straps, and two long-haired Dachshunds in the bed, along with my husband gets even more interesting.

I should note that that's "interesting" in the sense of the Chinese curse, "May you live in interesting times."

I slept very deeply and completely once I managed to get to sleep -- but I woke up every three hours, just the way I had before, except I wasn't in pain. But my body was used to waking up every three hours, so it did.

I was sorely tempted to take off the mask, but decided that that was the sure way to the bad habit of rewarding myself for a Big Mistake. Because I didn't want to have to sleep with the mask, if I wake up and reward myself by taking it off, then I'll do it more often.

So, I decided I would not. Instead, I settled back, kept the mask on, and counted my breaths like sheep. If I lost count, I started over. Eventually, I would go back to sleep. To wake up about three hours later... again not in pain, since my ASV was handling the desaturations which caused the pain, but because my body was accustomed to waking in pain.

Each and every time, I was tempted to follow the old patterns which would have let me take off the mask, I firmly and consciously made the decision not to.

Eventually, sleeping with the mask was just something I did.

Until my mask was threatened. viewtopic.php?p=425691#p425691

I had no idea how critical my hind-brain considered that mask, because talk about adrenalin surges when I thought it was threatened...

Wow. Moral: Good deeds are great. Just make sure they don't come back to bite you.

I learned how important my ASV was to me here, during and after Hurricane Isaac.
viewtopic.php?p=743758#p743758

And the solution to that came close to beggaring us. But it was essential.
Power in a Storm: viewtopic.php?p=849700#p849700

It DOES get better. I just got my new ASV, after using the Beastie for 5.5 years. I have a learning cycle all over because this one has different quirks from the way I've slept for so long.

Would I like to sleep without the machine? Sure... but I'm not going to lie to myself and tell myself that the hideously interrupted sleep I used to have is better just because I was more accustomed to it.

My Mom died of congestive heart failure -- one of the possible results of untreated apnea. I don't want to go there!

So I'll do whatever it takes to make my latest chapter in being a hosehead successful. You can, too.

[archangle]

Try to avoid the FFM (Full Face Mask) if you can. Some people use a chin strap to prevent mouth breathing. I make my own from a 3 inch Ace brand bandage wrapped 3 times around my head and secured into a loop with saftey pins. There are also commercially made chin straps.

However, some people do need FFM's.

Why do you advise against a full face mask? Just curious what your reasoning is.

I use one as I have a deviated septum and can't breath well through my nose at night.

IF a FFM works better for you, use it. A deviated septum and not being able to breathe well though your nose is a really good reason to use a FFM.

I'm not that opposed to FFM, it's just that they have significant disadvantages vs. a nasal mask if you can make them work. Some of the medical people tend to push FFM as a quick fix instead of fixing the problems with nasal masks. Or are just lazy and go strait to what should be the liast resort.

A few of the disadvantages of FFM are:

Harder to eliminate leaks due to having to fit a larger area of your face.
More claustrophobia feeling.
Nose breathing is better than mouth breathing in several ways. Air is filtered and humidified better.
Mouth breathing drys out your mouth. It can cause dental problems.
A FFM may push your jaw back and cause you to need a higher pressure.
I can talk, take a pill, sip water, or even eat with a nasal mask. Much harder with an FFM.

However, if you have problems with a nasal mask, and a FFM works better for you, use the FFM.

[SleepPlease]

Again, thanks so much for the responses and stories, everybody. It's great to have people I can relate to!

Ok, here are my gear details:

-Philips Respironics BiPap autoSV Advanced System with accompanying humidifier
-Philips Respironics Wisp Nasal Mask
-My ramp starts at 4 (psi?) and within 5 minutes raises to 13. Not sure what my prescribed range is, but I assume 13 is the bottom.

Last night was a bit better. My wife says I went to sleep after maybe 10 minutes (instead of the 20-30 minutes it usually takes me). So that means I fell asleep at about 12:10am. I did wake up at 1:30am. I'm not sure why but I think I might have opened my mouth. Then 4:30 again on the dot-- again in total, perfect sync with the machine. This time I didn't toss the mask, but put it back on, fell asleep promptly, missed my 3 alarms, and woke up by myself 10 minutes after I planned to at 6:10.

A few more observations:

-I'm definitely getting more used to the machine, although I need to read how to set my ramp for longer.

-I found that I can roll to either side without any mask leaks, but I don't stay that way long because I feel like I'm more apt to open my mouth while laying side-sleeping.

-Although I slept ~6 hours with the machine, I woke up with the same headache I've had for years.

-As I type this, I don't feel any more rested than usual (though I realize I'm still in the acclimatization process)

-Overall, this was my best night so far.

[Pugsy]

When you get a chance upload last night's detailed report if you have the SH software up and running.
We need to see AHI break down and events graph and leak graph particularly. How to do insert images of reports and examples is explained here in this thread.
Screen shot thread viewtopic.php?f=1&t=81072&p=737779#p737779

The headache...does it go away in about an hour or take longer? How does your neck feel?

I will send you a private message in just a little bit with a link for the provider/clinical manual in it so you can see all your machine's features and it explains how to get into the clinical menu and adjust the ramp time frame. It's easy to do.

Sending you a big pat on the back for putting the mask back on at 4:30 instead of listening to the little devil.

[SleepPlease]

The headache...does it go away in about an hour or take longer? How does your neck feel?

The headache will not go away if I don't take Exedrin, which usually knocks it out for the day. If no Excedrin, headache will stay with me and progressively get worse all day. This is the same headache I've had every morning for as long as I can remember. My neck actually feels fine. I'll upload a detailed report from the machine tomorrow morning.