(1) She keeps pushing me to increase to the 4.5 mg dosage of Xyrem twice nightly. I started on a low dosage of 2.25 mg twice nightly for 2 weeks (I am unusually sensitive to a lot of medications so we extended the time period where I gradually increase to the maximum dosage) but I slowly made the arduous uphill battle but maxed out at 4.25 twice nightly (never even achieving the "ideal dosage of 4.5 twice nightly or 9 mg/night)....
Sometimes I cannot sleep and have anxiety issues after taking Xyrem...sometimes it makes me hungry??? or at least craving food...but mostly I wake up in the middle of the dose and stumble in to the bathroom because Xyrem makes me have to urinate terribly...followed by vomiting (from moving around and getting the spins). On occasion I have smacked my head on the bathroom granite counter tops while flushing the toilet, missed the toilet, vomited in the sink etc...etc...This all occurred while working my way up to 4.00 mg twice nightly over MONTHS of small 0.25 increases in my nightly dosage. When I finally increased to the 4.0 mg twice nightly, I.....peed the bed....
...YES, I am shamefully, a 24 year old, bed wetter...Therefore, I dropped the dosage back down to 3.25 mg twice nightly and at my appointment today she told me that our ultimate goal is to reach the ideal dosage of 4.5 mg twice nightly...even though I told her I am feeling better on the 3.25 mg dosage (though I sometimes still wake up and hang my head in the toilet).I have read some other people's posts and it seems that everyone takes a dosage of Xyrem that works best for them....??!! Uhhh...so why does she keep pushing me to take more and more of this medication that seems to wreak havoc on my stomach, bladder, and sometimes gives me insomnia at higher dosages?! Am I wrong? Will this horrid medication really only work correctly when I reach the 4.5 mg dosage?
(2) I kept telling her the medication makes me sick...I can't always sleep on it. It makes me anxious and nervous and I become an insomniac (imagine my surprise! I have never had issues initially falling asleep at night...I almost miss the days when all I had to do was drop down on to my pillow and fall asleep within 90 seconds...at 2 pm after a full nights rest -- haha). Now instead, I find myself flailing around at night....I will actually wake up upside down in bed, smack my boyfriend in the face with flailing limbs (legs, arms, hands, feet- you name it the poor guy has been smacked with it in the middle of the night). She reviewed my sleep study results again and said I had mild PLMD...so she prescribed me Pramipexole to take in addition to the Xyrem....Aren't periodic limb movements common in narcoleptics? And not to my surprise, the new medication didn't help anyway...has anyone else with narcolepsy been prescribed this medication as well?
(3) Her ultimate goal is to wean me off of my Adderrall (45 to 60 mg/day) prescription. So she instructed me to reduce my dosage the first month I began Xyrem. I reduced from a full 60 mg/day to 30 to 45 mg/day per her instructions....Never had I had a worse month in my life...I was so tired the entire time, I cannot even remember 75% of what happened....I blanked out a lot during that time...automatically finishing tasks at work without too much idea of how I was finishing things. On top of not sleeping at night on the Xyrem...I had less stimulant during the day to carry me through...I was sleeping better without the Xyrem at this point!
I have read on this forum that a lot of people have to take some sort of stimulant in addition to the Xyrem...right? My Dr is telling me that I should be able to cut out the stimulant completely once I get to the maximum, ideal dosage of Xyrem....
(4) Finally, today she told me that I have to have the PSG/MLST at least once a year....Has anyone else's Dr told them this? I mean, my medication is already controlling my life...the sleep study is a HUGE pain in the...butt...for me. I go in to see her already once a month (which I also find a pain) so she can take my blood pressure, give me bad advice, and ask me the Epworth Sleep Scale crap (that hasn't budged from wayyy too tiredd to be normal on the point scale) while telling me she thinks I'm improving....
(5) Dr. never seems to even know how I get my Xyrem medication...I keep telling her the mail it too me...she then asks me if I need a refill and if she should print out the prescription for me (but...her PA faxes it in directly every few months I believe because the Xyrem people just call me to ask if I need it refilled...)...I asked her a question about it once (a very general one when I first started taking it...I think something along the lines of...why am I not able to sleep on it when it is supposed to knock you out cold...). Her answer was to ask the Xyrem hotline nurse.....
(6) She didn't explain anything to me...I have been trying to read and research through this forum etc...on narcolepsy...how it's tested and what is indicative of a positive diagnosis. I don't even know my full PSG/MLST results...she never really went over them with me...except for letting me know that I went in to "dream-sleep" at least 3/5 times during my MLST with an average of less than 90 seconds. And that it indicates narcolepsy....
Has anyone else experienced anything like this at all?
Thank you for your help! (I'm so desperate and confused at this point!)
