At The End of My Rope

[Bones]

One can only hope, right?

I'm hoping right along with you.

Brian

[Madalot]

One can only hope, right?

I'm hoping right along with you.

Brian

Thank you, Brian. And a huge thanks to everyone that has posted, PM'd, tried to assist with ideas, or just kept up with my situation. I really DO appreciate it.

It's been a few years since I had a conversation with my husband and said "You know that breathing problems could crop up with this. I'm telling you now that I will NOT use any machinery to keep me breathing. I'm sorry, but I won't do it and you'll just have to accept that." When I started having those troubles at night so soon, I agreed to see the doctor, then agreed to do a sleep study because my husband was just pitiful and asked me to. After the initial study where they said "cpap at 11 worked fine" and I realized that I actually DID feel a little more energy the next day, I relented and said "Okay. If using a cpap machine can make me feel even just a bit more energetic, it's worth it. I'll do it."

And I am lucky that it took me all of 3 days to get adjusted, find the right mask and be able to use the mask and machine all night. I've never had trouble with the physical aspect of using the equipment.

Here I am, 18 months later, having failed on cpap and bipap, and still trying to get the settings on the vent just right. I am beginning to understand that my situation is so variable that getting ideal settings may not be possible. I may have to lower my expectations and accept that even on ideal settings, there will be bad nights.

I'm grateful, though, that both the RT and my doctor SAW "variances" that they didn't feel were right and are agreeable to trying to make it better.

Now if we could just get that sleep study scheduled and over with.

I plan on asking about being able to get very specific information from the study. Anybody have any ideas on what I should ask for? If I want to have information to review at home, with my RT and possibly ask you guys here, what should I ask about being able to get after the study?

[HoseCrusher]

With the main issue being arousal every 90 minutes or so, I think particular attention would be focused on the few minutes leading up to those "events." If a "trigger" could be identified, that may help.

[Madalot]

With the main issue being arousal every 90 minutes or so, I think particular attention would be focused on the few minutes leading up to those "events." If a "trigger" could be identified, that may help.

I'm sure they'll be watching for stuff like that and I plan to make sure beforehand that the sleep techs understand what we're doing and why.

Anybody that has any good advice about exactly what to tell or ask them (technical or otherwise) -- I'm open to it and will write it all down.

I would like to get the results in a way that allows me to provide it here if it comes to it. What should I tell them I want and need?

[Madalot]

Something I wanted to mention to those that follow this --

My day/evening recliner naps (no ventilator) have gone from 10-30 minutes to sometimes being 2+ hours long. Yikes.

During my nap yesterday, I woke about about an hour in and found that I was breathing very fast and heavy, something my doctor mentioned about my vent download. That was the first time I had noticed anything like that myself -- the fast breathing upon awakening.

I'm finding that I need more sleep during the day now and if I sit down in my chair, I AM going to sleep. Unless I get up and walk around, I can't stop it.