I'm Going to Change Ventilator Settings Tonight

[Madalot]

I thought I was okay on the ventilator with the tidal volume at 500 and the maximum pressure at 25, but I woke up this morning again with pretty severe stomach pains.

I think I'm going to make the changes my RT and I discussed on Thursday. She said if I was still having stomach issues, I could change the volume to 475 (she said 450 is my minimum -- not sure about that number though) so she doesn't want to go that low unless we absolutely have to. I'm to change the maximum pressure to 23.

What I've noticed is that when I first go to bed, my IPAP stays around 14 or maybe 14.2. But after I really get settled down for sleep, the pressure increases to between 15 - 20 and seems to stay in that range most of the night. If I wake up and really stir, it drops back down to around 14 - 15. My RR seems to be around 7 - 8 most of the night.

I'm guess the machine needs to keep the IPAP between 15 - 20 to keep the volume up. Maybe making the changes tonight will make it better.

I have felt absolutely horrible all week. Tired, weak and just basically yucky. This stuff is supposed to make me feel better, isn't it? LOL

We'll keep on trying I guess.

[JohnBFisher]

Thanks for the update. You don't know just how much I appreciate you sharing it. I had a frank discussion with my neurologist who noted that I showed a LOT of dsyregulation of my breathing during my last sleep study. He's pleased to see the ASV unit helps as much as it does. However, he noted that if I continue to have serious periods of dsyregulation my next step would be a ventilator. He was thrilled that I was using a pulse oximeter to try to sort out my sleep problems. I recently - even with the ASV - had a period of high leaks and bad SpO2 numbers (down in the 80s). So, he's happy I am being aggressive about getting numbers and tools in place to sort it out. But a ventilator as my next step. Yikes! I will share more of that visit in another post.

I certainly hope you are able to get some relief. Might I also offer another thought. You might want to see if it helps. Sometimes if your head is raised more than your feet (such as in a recliner or with pillows under you back and head) it can help reduce the aerophagia. Of course, I don't know how everything else would work for you sleeping that way. Just something to consider.

Here's hoping you have a good night of sleep with the new settings.

[KatieW]

I hope you get some good sleep tonight Madalot.

[Madalot]

Thanks for the update. You don't know just how much I appreciate you sharing it. However, he noted that if I continue to have serious periods of dsyregulation my next step would be a ventilator. He was thrilled that I was using a pulse oximeter to try to sort out my sleep problems. I recently - even with the ASV - had a period of high leaks and bad SpO2 numbers (down in the 80s). So, he's happy I am being aggressive about getting numbers and tools in place to sort it out. But a ventilator as my next step. Yikes! I will share more of that visit in another post.

Here's hoping you have a good night of sleep with the new settings.

I'm grateful to have a place to talk about this with people that understand. This is just all so new to me.

I'm sorry that your situation is progressing such that a ventilator may be the next step for you as well. Maybe hearing some of my experiences will make it a tad easier for you IF that time comes.

I had talked to my doctor about my monitoring my own pulse ox at night. She's not opposed to it, but for right now she wants the DME to do it on a regular basis. I'm guessing the way my situation has gone makes her want to have it monitored by them, at least until we get me more stabilized. I'm probably going to start doing it myself at some point -- just not right now.

I made the changes to the vent and it didn't seem to make much of a difference. The vent basically did the same thing -- had the IPAP around 14 until I got ready to sleep, then it was up at 20 or so most of the night.

I might try propping myself up a bit more, but I've already changed my "norm" from one pillow to two. I had to do that last year before I even reported the breathing difficulties. I might add another one, but it's very hard for me to sleep sitting up but so much.

As it stands right now, we're not scheduled to do the download for my doctor for another week. I may just have to deal with this until that point. I'm not sure. I need to call my RT tomorrow and tell her I made the changes and that it hasn't changed too much.

[Judy R]

I'm really sorry to hear that your having such a hard time with your settings and all. I really hope you'll be able to find something that's comfortable, and will do the job all at the same time. I know this must be really hard and frustrating for you, and I truly hope that soon you will be sleeping soundly through the night without any complications. Hang in there and keep moving forward.

[Madalot]

I'm really sorry to hear that your having such a hard time with your settings and all. I really hope you'll be able to find something that's comfortable, and will do the job all at the same time. I know this must be really hard and frustrating for you, and I truly hope that soon you will be sleeping soundly through the night without any complications. Hang in there and keep moving forward.

Thanks. I keep on trying as best I can. My situation is obviously a little complicated and not easily solved. But I'm going to keep on as best I can.

[Ms.Snuffleupagus]

Hi Madalot,
Would a foam wedge under your pillow help instead of adding more pillows?

[Madalot]

Hi Madalot,
Would a foam wedge under your pillow help instead of adding more pillows?

It might. I tried one many years ago when acid reflux was keeping me up all night long. And I found I couldn't get comfortable on it, but it may be worth another try. Maybe I'll see if I can get one and give it a try.

Thanks.

[Madalot]

I hope you get some good sleep tonight Madalot.

Thanks Katie! I actually sleep reasonably well (or it seems to me) but I don't stay asleep. I wake up a lot that I know of and probably even times that I'm not aware of.

But thanks for the good wishes and support. I really appreciate it.

[KatieW]

Hi Madalot,
Would a foam wedge under your pillow help instead of adding more pillows?

It might. I tried one many years ago when acid reflux was keeping me up all night long. And I found I couldn't get comfortable on it, but it may be worth another try. Maybe I'll see if I can get one and give it a try.

Thanks.

Madalot, I've been considering this wedge:

http://www.relaxtheback.com/side-sleepe ... 11-6389766

[jnk]

In my opinion, decreasing volume is not as likely to reduce aerophagia as would reducing the maximum IPAP, if that is possible with that machine and your situation. There is sometimes a very specific threshold as far as the line between the pressure that causes air to enter the stomach and the pressure that does not. A lowering of maximum IPAP by less than a cm can make all the difference for some people.

Also, I have heard it said that trying not to eat anything after a certain hour can help the aerophagia troubles a lot for some.

jeff

[Madalot]

Hi Madalot,
Would a foam wedge under your pillow help instead of adding more pillows?

It might. I tried one many years ago when acid reflux was keeping me up all night long. And I found I couldn't get comfortable on it, but it may be worth another try. Maybe I'll see if I can get one and give it a try.

Thanks.

Madalot, I've been considering this wedge:

http://www.relaxtheback.com/side-sleepe ... 11-6389766

Very interesting Katie -- Thank you!!

[Madalot]

In my opinion, decreasing volume is not as likely to reduce aerophagia as would reducing the maximum IPAP, if that is possible with that machine and your situation. There is sometimes a very specific threshold as far as the line between the pressure that causes air to enter the stomach and the pressure that does not. A lowering of maximum IPAP by less than a cm can make all the difference for some people.

Also, I have heard it said that trying not to eat anything after a certain hour can help the aerophagia troubles a lot for some.

jeff

Hey Jeff -- I think you might be right there too. I reduced the maximum IPAP to 23 last night and still had problems. The eating thing may be relevant too as I'm not always good about that. I've had significant appetite problems lately and find I can't eat much at dinner time. But I'm hungry again later and have a small snack at that point. It may be contributing to the problem. Hard to know how to fix it though since I just can't eat much at one time.

I think it's just going to take time to get this thing figured out. I think there are so many options available on the ventilator and we're just going to have to keep playing with it until we find the right combination.

[roxyh37]

How do you change the pressure settings on the REMstar M Series?

[jnk]

How do you change the pressure settings on the REMstar M Series?

This link should help you.

http://www.apneaboard.com/CPAP%20Adjustment.htm