New here - a few questions....

[KarenAZ]

Hi - I am new here and have just a few questions if someone can help. I was diagnosed with sleep apnea/hypapnia and severe Periodic Limb Movement Disorder a year ago in July. I've been using my CPAP machine almost every night -sometimes on weekends I don't.

I still wake up 2-3 times a night even with the CPAP. I suspect it's the PLMD that wakes me. I'm not awake long and I suspect the sleep I DO get is better sleep than I have gotten before.

Recently I have lost almost hit the 50 pound mark. I throw that in only because I'm wondering if that has anything to do with why I feel like I am smothering now. I did change out my mask last night and it was better. But it's just not as comfortable as it was. Maybe the ramp needs to change or something? Do I call the sleep place or my doctor (who truthfully I don't know knows squat about the settings!).

Thanks for your help
Karen in Phx

[jules]

If you have that great of a weight loss since starting cpap, a pressure change is probably in order.

Contact your doctor and suggest an APAP trial or another sleep study.

Since you indicate you have PLMD the in lab study is probably the route to go since you need to know if you need to take medication for that and the lab can determine what kind of arousals you are having.

[GumbyCT]

Call whoever you want - but no one cares about you as much as you do, no one.

Put on your reading glasses & get comfy -

Start at the Yellow Lite bulb - Our Collective Wisdom
viewtopic/t14303/New-To-CPAPtalkcom-Cli ... tbulb.html
cpaptalk-articles.php

READ cpaptalk.com FAQ
cpaptalk-faq.php

For Acronyms & Definitions
http://www.sleepnet.com/definition.html

Good Luck,
GumbyCT

[larbabe]

Hi,
I'm new to CPAP use, but have lots of experience with RLS and PLM. Mirapex and Requip are great for these. The only side effect I notice is edema, so I don't use one every night. Just when it gets bad. Exercise helps, too. And sometimes a nice warm blanket or hot pad.

And I agree about checking with your sleep dr. That much weight change is bound to affect your apnea. Could be you need a change in treatment.

Good luck!

[ozij]

Hi, and welcome.

Many of the acronyms you'll find in our posts are explained by links (the text it blue) at the bottom of the post.

Yes, its possible that your new sense of suffocation is caused by to much pressure - since now you weigh 50 pound less.

You have the simplest (almost simplest) machine around - more sophisticated machines let you track your own breathing events - many of us change our own pressure based on that. However, even if you decide you want the doctor's input and OK on pressure changes, having the data is better than not having it - if your doc. agrees on that, fine.

You can buy a data tracking machine - APAP (self adjusting and more expensive) or fixed pressure - online with the prescription you were given. If you can at all afford it - get the self adjusting machine since it can be run in fixed mode as well, but you can use the self adjusting (auto mode) to find out what the fixed pressure should be.

O.

[kteague]

Karen,

If you are in the process of a continuing weight loss, an autopap may be a good investment, although a loaner can be obtained periodically.

At this particular time, since you don't have a good handle on how much your PLMD is affecting your sleep, and your cpap therapy is in question, I see your situation meriting another sleep study. Anything short of a new sleep study will only half answer your questions, and will probably still eventually result in another study to evaluate the PLMD.

In one of my repeat studies I made the mistake of taking the opportunity to try a new mask. It backfired and I was awake most of the night fighting with an unfamiliar mask. The last time I took my own mask and slept well enough to get a good picture of my sleep issues.

Hope you get things figured out, and a big congrats on that weight loss!

Kathy

[girlsaylor]

Hi Karen and happy to see you found us! This group is the best, and will help suss this thing out. I knew you had lost that weight, but I guess I didn't realize or read thoroughly, about your restless leg problems. I don't have that myself, but there are some here who have OSA plus RLS. I think you'll get alot out of the yellow lightbulb up above, Our Collective Wisdom. Makes us much better able to participate actively in our therapy, and the knowledge sure helps when formulating questions for the doc.

And hello to Larbabe too! Glad to have you onboard. Your experience with RLS and input will be an asset to the board, I'm sure!

Welcome again!

Girlsaylor

[larbabe]

Hi Girlsaylor,

Thanks! Looks like this is a great place to be. Lots of folks anxious to help & support each other. So much better than going it alone.

Hang in there, Karen!

larbabe

[KarenAZ]

Thank you all. I did call the sleep place today - and I have to call my doctor tomorrow to have him order a new sleep study (can I just say I HATE them with a passion?!). She said anything over 25 pounds either way could very well affect the pressure and 50 was a lot.

I am never aware I have the PLMD - I was as surprised as my doctor was when it came back from the sleep study. I am on 400 mg/day of Lyrica for neuropathy which probably is not helping the PLMD or who knows, could be part of it.

I can only get what my insurance company will provide so I have to stick with what I have. If I have to keep going in for sleep studies to have the pressure adjusted, then so be it.

I am not done with my weight loss as I am sticking to a pretty strict low carb life style due to a diagnosis of prediabeties (although I guess in the big scheme of things it is Type II Diabeties being controlled). I will do everything I can to keep that in check. What's pasta and potatoes anyway

Will let you know when my study is again. I have to psych myself up for it. In the meantime - I'm not using it.

I'll be back
hugs
Karen