Continued troubles sleeping

[tonycog]

Hello
I've written here over the past month about my new-by troubles. I still don't have a mask that I really like, but I seem to have one that is barely tolerable for now.

I am continuing to have real problems actually falling asleep. It has been 30 days since I got my Bi-PAP Auto SV and I have still not been able to fall asleep on my own - only with Ambien. At best, I will sleep about 5 hours on the machine after taking 10 mg of Ambien. Then I awaken and the rest of the night I will doze on-and-off. This is a bit frustrating, but probably workable, at least for now.

When I try to go to sleep on my own (without an Ambien), here is what happens: I will just begin to doze off. As I barely reach sleep my centrals begin and my machine increases its pressure. When the pressure increases I get startled awake. I get startled enough that I can even feel a little adrenalin boost. This wakes me completely and I have to start all over again trying to fall asleep. Last night, this happened despite the Ambien. Before bedtime, I took an Ambien (like I have been for 4 weeks now) and 3 hours later was still not sleeping - having the startled-awake sensation at least a couple of times. After 3 hours I finally gave up and just took a 2nd Ambien and slept for 5 hours.

This same thing has happened a couple of times on weekend afternoons when I tried to steal a nap. (No Ambien). I lay there, hooked up to Bi-PAP, barely begin to drift off into sleep and then the increased pressure startles me back awake. A couple of days ago, I laid in bed for 2 hours in the afternoon hoping for a nap. I had the startled-awake sensation happen at least 4 or 5 times. I did find the 2 hours a little relaxing, but I never did sleep.

I have my titration sleep study tonight and am going to talk the the tech at the sleep lab about this. I don't know how much help she can be, but I'll try. I'll be hoping I can at least sleep for her tonight so she can do the sleep study.

Any ideas, thoughts or suggestions?

Thanks again,
Tony

[riverdreamer]

I don't know what pressure you are starting with, but you could ask that the machine start with a pressure that will handle your apneas. That way it doesn't have to increase pressure suddenly. Since you will be having a titration, it would be good to have the tech see what pressure works to handle those apneas as you are falling asleep, without being too high to fall asleep in the first place. A lot of people here do not use a ramp on the machine, but start out at the pressure needed for treatment.

[timbalionguy]

Interesting problem. I do not know near as much about central apneias as I should. I suspect I experience them once in a while. I think everyone does.

On the following advice: I am not an expert. Your mileage may vary. Please completely read the instruction manual.

One thing to consider is trying straight BIPAP set at a reasonable pressure as Riverdreamer suggests. Then after a few days, raise your IPAP pressure max 2 or 3 cm/H2O. See if you are comfortable with that. If you are, work on getting used to it. Then, you can start slowly raising your upper pressure until you are getting truly effective therapy.

Another thing to look at is if your machine has a variable pressure gradient in response to events. If it does (and I don't know BIPAPs that much, set it for a less aggressive pressure change.

The big pressure bumps bothered me for a few days at first. But, then I got used to them. Now, I tend to wake up at the end of REM sleep episodes, or once in a while now, not at all until early hours. I find the pressure has been high, and upon review of the data, high for a while.

Also make sure your mask does not leak. That could be what is waking you up.

Lastly, Riverdreamer, I love your avatar! Do you know where that picture was taken? Tigers just love water!

[harry33]

ask doc about taking a beta blocker med as well to calm your body more

IMO nothing wrong with ambien to get you into the habit of accepting the bipap

[sleepypp]

Hi,

I don’t know much, cause I’m a newbie, but I feel for you man. I know what it’s like to be stuck in this never ending rut of finding yourself wide awake when you’d love to be peacefully sleeping.

First thing I’d like to know is your Rx pressure.

I thought I’d be smart and run auto PAP and let the machine figure it out but ended up like you… getting my mask blown off my face and freaking me out enough to have trouble getting back to sleep.

I finally put my faith in the machine and the doc. Set it to my RX pressure with a ramp of about 15 minutes. And had MUCH better luck. I look at that mask as sweet relief from weariness now. One night I was down to AHI .02.

It’s tough but you have to wean yourself off that Ambian. Look at that machine as your sleep solution. I still wake up many times throughout the night, but try to remain calm and not let it get to me. Roll over and go back to sleep. Just let it happen.

How about that mask? My Quattro kind of “floats” on my face and is really quite comfortable. Sort of…

The other thing is you have been at this for over a month. Maybe your RX pressure is just too intense and perhaps there is another solution. I figure it this way. If this fixes my problem it’s a win win. The machine is much cheaper than surgery. Sure it’s a little crazy, but I think I can deal with it. I can totally understand why people wouldn’t be able to handle it though. You’re not alone. There’s a glut of $100 to $300 machines with 50 to 100 hours on them on Craigslist at any given time. The machine I bought was set at an Rx pressure of 16, CFLEX off and NO ramp time. No wonder it was for sale.

Are you using the C-flex or exhalation relief? I guess that’s a part of BiPAP anyway?

Talk to your doc. Sounds like you’re not too keen on your mask. Maybe you have an anxiety issue. I know I do.

Well, good luck. I hope you find some relief soon.

[tonycog]

Thanks for your replies. I had my titration study done on Thursday night. It was very helpful. While I thought I had finally found a full face mask that worked, the study revealed bad leaks (I did not realize how bad on my own).

One or two hours into the study, the tech came in and changed my mask to an Ultra Mirage Full-Face. She later told me that with the mask that I had brought in my sleep study was a "total mess" and that I was heading toward some Centrals, so she stepped in. Once she got the new mask fitted, I slept on through the night and the study looked fine - no apneas. In the morning, she even GAVE me a new mask to take home since I would have been looking at a 3 or 4 day wait to get one of my own.

On my first night back home (last night) I slept the best I have in the 31 nights so far on Bi-PAP. I still took an Ambien to get to sleep (my next hurdle will be to ditch those) but I was able to sleep about 5 hours straight through and then about 4 to 5 more hours early this morning with some tossing & turning, but it was refreshing. I still feel pretty spent, but today is the best I have felt in a month.

I've wondered for the past month about the skills of my DME provider. She did not make much effort to actually fit me for my mask. She essentially tossed me 2 or 3 at a time and said "take these home and see how they work." When I finally got help from someone that knew what they were doing, I got a mask that actually fits and works. I have a new hero.

I will still be working on the "startled-awake" issue that I mentioned to start this thread, but at least I seem to have gotten one hurdle cleared.

Thanks again,
Tony

[riverdreamer]

Good news, Tony!
Hopefully now that you are sleeping, you will develop some tolerance for the pressure when you are falling asleep. Fixing the leaks might also help keep the pressure from going so high. Wishing you the best of luck for things to keep improving.


To timbalionguy, I can't remember where the picture was taken. Certainly not by me! I'm guessing it might be a tiger in captivity, to get the underwater shot. But tigers sure do like water, and I have lots of beautiful pics of them wading or swimming in streams or rivers. They just didn't show up as well for an avatar, as they are not as close up.

[BleepingBeauty]

In the morning, she even GAVE me a new mask to take home since I would have been looking at a 3 or 4 day wait to get one of my own.

Wow, that's a GREAT technician! Congratulations on your successful titration.

I've wondered for the past month about the skills of my DME provider. She did not make much effort to actually fit me for my mask. She essentially tossed me 2 or 3 at a time and said "take these home and see how they work." When I finally got help from someone that knew what they were doing, I got a mask that actually fits and works. I have a new hero.

Welcome to the club (to which none of us want to belong). Many of us question that same thing - with good reason, considering the poor experiences we have with our DMEs.

at least I seem to have gotten one hurdle cleared.

Thanks again,
Tony

Progress is progress, and you're making some! Congrats, Tony. One step at a time, and you'll get there. Continued good luck to you on this journey.