It's been an interesting few months. Ups and downs and all around. I started the Xyrem, and got bumped up to 3 gm x 2. I felt great. Awesome.
Well... I had a great morning in mid January. I mean, woke up and felt awesome. And I got in the shower, and suddenly... Well, I didn't feel so awesome. Behind my eyes hurt. My teeth hurt (weird, huh?) I felt dizzy. I had intermittent, violent headaches.
I wondered a bit about my blood pressure. My blood pressure is always really low (108/68 is not unusual). So, after a few hours feeling crappy, I called my dear husband and had him bring me home a blood pressure cuff at lunch.
My blood pressure was 184/120. Yeah. By the time I got to the ER, it was a bit lower. Four hours later in the ER, it was still significantly elevated, but low enough that they sent me home without meds.
I stopped the Xyrem. My sleep doctor called and said to wait a week, and try a small dose of Xyrem again.
So I did.
A week or two goes by. And things are going well at 1.75gm x2. Except... boy, is my nose runny. Not like sniffly sniffly... It's like a springtime flood in the Rockies. My nose gets raw. My lips get raw. They bleed. It's not allergies. Or a cold.
So on a hunch, we drop 'er to 1.5 gm x 2. Better. Still not a sniffly sniffly deal... but better.
Then comes the rash. And the itching (the itching is not where the rash is, oddly). The rash is all around my armpits, and my neck. My eyes have these nice big gashes on the lids... I was not scratching. They just got red and popped open.
Whatever this is is an allergic reaction, and it is systemic. I stopped the Xyrem again about a week ago.
The rash is gone. My nose and lips and eyes are healing. As much as I may like having a life with Xyrem, the side effects are too dangerous for me. I am not screwing with my blood pressure, and I am fairly sure that the cumulative effects of an allergic reaction to something in the Xyrem would have led to a lot worse than an burny prickly rash.
So back to stimulants only for me.
It truly blows.
I still would never discourage anyone from at least trying the Xyrem for narcolepsy. I think, if I could have tolerated it, it really could have made a huge difference.
I also have had the psychiatric diagnosis repealed. Go figure. Seems I was suffering from narcolepsy all along. So, er, well, there's twenty years of seeing yourself one way to wrap your head around, SleepyChick!
I see the sleep doc at the end of the month. Boy, I hope he ups the stimulants. I need a nap after writing this.
I'm a 34 year old woman with multiple sleep disorders (sigh). Sleeping's been a lifelong sort of love hate thing for me. I had my first polysomnography in 2001, and I was told I was "fine." Turns out, from my history and the muscle tone that the PSG returned, I showed signs of REM Behavior Disorder.
Fast forward three years, where my neurologist, on hearing my reports of ungodly fatigue (more like someone turned up the gravity) and daily headaches, declared I needed a sleep study.
That time they found moderate obstructive apnea.
Did my CPAP titration, wear it dutifully. But I was still so tired. I mean, tired like I was smote from on high. So two weeks ago, I had a re-titration.
They discovered (this time) I needed my CPAP turned up and I have Periodic Limb Movement in Sleep Disorder. I also have an extremely abnormal sleep architecture.
What I wouldn't give to sleep through the night!
