I am certainly going to advise everyone to learn as much as they can and keep an eye on their data. I could have had this straight 5 months ago if I had done so. I REALLY hope this new titration happens soon because if not I'll be suffering through a disney world trip. Wouldn't be the first time I h...

!!UPDATE!! Doctor called me first thing this morning and told me to come in today asap. Yes the Xyrem is causing my centrals. I need an ASV. My Xyrem dose is lowered until everything is straightened out. I have learned a pretty big lesson from all this. Don't always go with what the doctors say blin...

Thanks so much for the thought out response. I am without a doubt positive I have extremely severe cataplexy. I never lose conciousness. Full awake while collapsing trying to fall the best possible way I can, which is pointless In most events. You reminded me of something though. Since seeing my Dr....

Ok so new update. Remember how I said my doctor told me the Xyrem is causing the mucus mucous, but I felt it wasn't because I have no mucus when I use Xyrem without the cpap. It turns out Xyrem is causing the acid reflux! So Xyrem is what's making all the sickness and the horrible sleep. I've read t...

I never had a day time sleep study because it was never necessary. I have horrific cataplexy without xyrem and I show every other symptom as well. Plus something about my rem cycle acting like it typically does for narcolepsy.

I've left a message for my doctor saying how many clear airway apneas I've had over the past 3 days. 72 in 8hour night, 64 in 7 hour night, and 42 in a 5 hour night. I've got the waking up sick thin down now, raising my bed helped tremendously. But now im beginning to get frequent headaches which is...

I was asleep for most the night last night. The only time i woke up was to take the meds. I'd also like to add that I threw up in my mouth while trying to fall asleep for the first time. It just shot right up with minimal resistance, so i'm sure if its happening while im awake its happening while im...

Oh and for the record. last night was probably not a very good night to use. Like ive mentioned he had to lower my xyrem dose because of my blood pressure. last night was my first night trying to sleep on the lower dose and on top of that im trying desperately to find a position I can fall asleep in...

I will definitely keep updating this. I want to thank all of you. My own family thinks im a hypochondriac (just like they did when I told them for years I had narcolepsy). I know something is wrong and im not going to let him cut me off and answer me before I finish asking a question next time. It's...

No I don't have anything to monitor my oxygen levels. Xyrem works really crazy. That's all I know. It's a level 3 controlled drug and he prescribes more people xyrem than anyone else in the state. I really feel like I don't have much of a choice to go with what he says. I'm just going to see if I ca...

So im reading these notes I have further and im suddenly remembering why he was so upset when I came back from that sleep study. "some of the events during rem sleep appeared central. However, there was some difficulty differentiating these events from obstructive, because of artifact in the chest a...

OH and it was a titration study that I was referring to earlier it says I had 5 central apneas/hour.

Yah I see him on a regular basis. He's the "Number one" doctor for narcolepsy according to the narcolepsy network. I just saw him the other day and he upped the pressure so I doubt he'd want me coming back in so soon. Where does it show that im having centrals?

If I only use the machine for 2-3 hours I can actually tolerate the nausea and gagging the next day. It really seems to me like im having some sort of acid reflux caused by the machine. When i sleep with it I wake up and gag all day. When i sleep without it i feel like i sleep great. I know I have t...

On the night I only slept a few hours. Yes i did sleep pretty well. You see I have to wake up in the middle of the night to take a second dose of xyrem. So I sometimes dont always think to put it back on before passing out again. The last study i had the central apneas/hour was 5. This was not my or...