My Situation - FIRST NIGHT ON MY OWN

I LOVE that you are seeing options you can try now! That has to make you feel a little better!

You go girl!

I just woke up from a semi-successful nap in my recliner. Starting out at an IPAP of 17 is a little shocking to say the least. I tried to use the Ramp, but on this machine, the highest you can start the Ramp is 6, which is way too low for me to start at. I was hoping to start the Ramp at around 14 and let it get to 17 gradually, but obviously that's not an option.

I increased the EPAP to 9, which is halfway between where I was (6) and where they had me during the study (12).

Mask leaking was a bit of a problem, but being on my back in the chair makes that not surprising. Even at 14, my mask will leak more when on my back. I think I will try these settings tonight for regular sleep and see what happens.

Good luck!!!

Madalot wrote:I just woke up from a semi-successful nap in my recliner.

Been a long, long time since you used the word semi-successful in describing how changes in your vent's settings have affected your naps or sleep. Here's keeping my fingers crossed that the night will ALSO be at least semi-successful!

robysue wrote:

Madalot wrote:I just woke up from a semi-successful nap in my recliner.

Been a long, long time since you used the word semi-successful in describing how changes in your vent's settings have affected your naps or sleep. Here's keeping my fingers crossed that the night will ALSO be at least semi-successful!

LOL -- I used that term because I WAS able to doze off, despite the higher pressure. My mask was pulsing at me with the 6-17 pressure range, like jbn3boys suggested, thus why I increased the EPAP.

My recliner naps have never been great, especially since doing them on the ventilator. I consider today's test semi-positive in that I WAS able to doze, so hopefully tonight will be okay.

I am actually cautiously optimistic (and excited) about trying this tonight. Isn't that stupid? To be excited over something like this? Shows how little I have going on these days, huh?

Madalot wrote:I am actually cautiously optimistic (and excited) about trying this tonight. Isn't that stupid? To be excited over something like this? Shows how little I have going on these days, huh?

Not at all! Since the nap today was better, I share your optimism that tonight might be better, too.

I think everyone who's followed your posts here can appreciate your excitement (and share it with you). I, for one, will be anxiously waiting to hear how it goes tonight. Fingers crossed!

Thanks for the good wishes. I'm at the point that if this doesn't do the trick, I may turn everything the other direction (lower settings) and see if that helps.

I'm getting desperate and desperate times calls for desperate measures...

The changed settings did NOT work last night. I could not fall asleep with a starting IPAP of 17 and on top of that, my chest/lungs started to ache. I lowered the settings back down, but DID increase the IPAP to 15, hoping that would help some. I fell asleep almost immediately after that, but still woke up a lot during the night.

The situation seems to be that once asleep, I need IPAP of around 17, but I can't handle that high of pressure to fall sleep (and it still will wake me up).

It was worth a shot.

I'm sorry to hear that it didn't work out the way that you hoped it would. It sounded so promising. Especially after your nap results. I don't know how the settings work on your machine, but can you increase in .5 increments? I was wondering if you could "sneak up" on the 17 by increasing from 15 to 15.5 to 16, etc. staying at each new setting until you were used to it.

bailachel wrote:I'm sorry to hear that it didn't work out the way that you hoped it would. It sounded so promising. Especially after your nap results. I don't know how the settings work on your machine, but can you increase in .5 increments? I was wondering if you could "sneak up" on the 17 by increasing from 15 to 15.5 to 16, etc. staying at each new setting until you were used to it.

Right now, the machine only changes in whole increments (I checked). I don't know what differences will be there after I get my unit back from it's upgrades & maintenance.

Wouldn't it be fantastic IF the upgrades allowed changes in .5 increments AND the ramp would start at a higher level?

I won't hold my breath on it...

So last night you slept with IPAP of 15 and EPAP of 9? If that's correct, I'd say give it another few night at that setting, then increase the IPAP by 1 to 16 and see how that goes. IF that goes okay, then I'd try increasing the EPAP to 10. Try that for a few days. Maybe then you could try an IPAP of 17.

I know there is a lot of "get used to" in PAP therapy! When I first started, I was at a starting pressure of 10. I thought the thing was going to blow my brains out! Now I start the night at IPAP 16 with no ramp, and sometimes think it should maybe be a little higher. I'm just thinking maybe if you take things slowly, even if it has to be in whole increments, that maybe you can get some relief. If increasing the IPAP above 15 doesn't work, then I'd try increasing the EPAP instead. Maybe as they get closer together, you may not get the pulsating feeling, which may be what is actually waking you up, rather than the actual higher pressure--just that you notice it more at the higher pressure.

I'm just thinking "out loud" here....so try what you'd like, and ignore what you don't like!

jbn3boys wrote:So last night you slept with IPAP of 15 and EPAP of 9?

I put the EPAP back down to 6 as well. The entire scenario of 17/9 was very difficult and uncomfortable. I started feeling like I was struggling to exhale against 9 and I was worried about leaving any of it and trying to sleep.

Leaving the IPAP at 15 and hoping to increase it after a couple days was in my plan, hoping that maybe I can work up to 17. The EPAP has me a bit concerned and I'm not sure how much I want to mess with that again. Not being able to exhale against higher EPAP is a part of my neuromuscular issue so I need to be extra careful with that.

:::sigh::: Too much to worry about.

Madalot wrote: The EPAP has me a bit concerned and I'm not sure how much I want to mess with that again. Not being able to exhale against higher EPAP is a part of my neuromuscular issue so I need to be extra careful with that.

:::sigh::: Too much to worry about.

I only suggested increasing it since it was higher during your sleep study. If you are not comfortable, then by all means do not change it.

I'm really hoping you get YOUR machine back soon, with it's updates, and that something starts working better for you! Hopefully you will then be able to increase by .5, and you can work your way up.

Too bad your RT isn't more helpful at this point. I really feel for you , Maddie!

Madalot wrote:Wouldn't it be fantastic IF the upgrades allowed changes in .5 increments AND the ramp would start at a higher level?

I won't hold my breath on it...

I don't blame you a bit for "not holding your breath on it" as your journey has been so difficult. However, I keep up on your posts and I find myself really hoping the return of your machine with the upgrades done may be a positive thing. I sooooo hope so.

Jeanette

jbn3boys wrote:I only suggested increasing it since it was higher during your sleep study. If you are not comfortable, then by all means do not change it.

Oh, I know and I appreciate the suggestions and help! It was worth trying for sure and I may try again, depending on how things work out.

newhosehead wrote:I don't blame you a bit for "not holding your breath on it" as your journey has been so difficult. However, I keep up on your posts and I find myself really hoping the return of your machine with the upgrades done may be a positive thing. I sooooo hope so.

Thanks Jeanette (and everyone else that has replied and offered help/support) -- I appreciate it!

I'm still working on all of this, from numerous angles. I need to make a decision about Mirapex (whether to keep taking it, increase the dosage or give up on it), sleeping pills (not my favorite choice), medication to help the fatigue during the day (name escapes me right now) -- machine choice, settings, etc.

There are "too many cooks in my kitchen" and somebody needs to be "head chef." And since none of my medical team seems to want that job, I guess I'm drafted. I need to get into "bitch mode" to do the job -- and I'm working on it.