So for the last couple days, I have been truly exhausted. I’m doing everything right, I don’t eat for two hours, take my meds wake up three hours later take them again then get up. Usually end up with a short nap during the day, but it seems that I am back to pre-med nap schedule with the two hours twice a day thing happening. I’m taking 4mg each dose and that is fairly high, and I am leery of going higher, but I may have too. Grrrr. I see my sleep doc this summer for a whole new round of labs and such we may have to do some tweaking again I guess. At least my Cataplexy is so much better. Mostly.
So yeah that isn’t even the hinky part.
I should be IN bed when I take my meds, because its supposed to kick in like any minute once you take them. But I don’t. It takes on average 45 minutes for them to kick in for me anymore. That just seems unheard of. And tonight, I’m skipping my last dose because during my first dose, I some how managed to get up get food, and eat with out killing myself. So I don’t know when the last time I ate was. I don’t remember any of it. First off you have to have an empty stomach on Xyrem. You just do. It can be a painful experience if you don’t. Being half conscious and vomiting is never fun. And I am guessing completely unconscious could be deadly. But I managed to get down stairs, open a giant container of pickled eggs, with out spilling it, got dishes with out breaking them, and used a fork and still have both my eyes. I even managed to use a knife to cut an OBNOXIOUSLY sized piece of fudge. Still have all my fingers. I then carried all this to my room, and ate it. And went back to sleep. (Forgetting to put my BiPap Mask back on too, this is just bad news all by itself.) And that is just all the stuff I figured out. God knows what else I did.
Some of you may think, eh, big deal sometimes people sleep walk and eat no biggy. So for all you non-afflicted let me explain, on Xyrem, THIS CANT HAPPEN.
Xyrem should render you totally unconscious with in minutes of taking it. It should also be damn near impossible to get up and move around, let alone safely use utensils! And as I mentioned before, It’s a pretty bad idea to eat on it. Seriously, I went downstairs. And then back upstairs. And did this with out snapping my neck. It doesn’t even hurt. At the least I should have given myself whiplash.
I strongly suspect this is not the first time. The first time I have eaten, I am pretty sure, but this up and moving about stuff, has to stop. Once I woke up wearing different clothes. I just attributed that to perhaps not remembering what I wore to bed, correctly, but now I wonder….
I was never a sleepwalker before, I don’t want to be one now. I don’t need to head to the library in my PJs in the middle of the night. This is beyond Automatic Behavior, this is something worse, and it is trying to become a problem. Gonna have to fix this before it gets worse.
This went on for a while, and I have since adjusted my schedule and it has stopped. Xyrem, is tricky. always have to tweak it to get it right where you need it and that can take months to years to figure out it seems. So far so good though…