Does anyone take Xyrem for Cataplexy?
Yes. I first started taking it 10 years ago. I took it for 5 years and had to stop when funding ceased. Recently obtained funding from Caring Voice Coalition. I also take fluoxetine. Cataplexy is reasonably under control. I've had Narcolepsy for 56 years (36 years without knowing what it was). Had it since age 6, not diagnosed until 42. Now 62. It ruined by childhood and a good portion of my life, but now I'm doing pretty well. After a near-fatal heart attack in 1997, I had to be taken off stimulants, permanently. I think Xyrem is a much better idea, because it improves the structure of your sleep, rather than trying to substitute stimulants FOR sleep. There IS no substitute for sleep!
I have Narcolepcy with Cataplexy, Rem sleep disorder, Sleep paralysis, Night terrors, and Sleep Apnea. I'm 48 and probably had some of these since I was kid but just lived with it. I was formaly diagnosed 2 years ago because the Cataplexy attacks were happening daily and affecting my every day life. My Apnea is almost under control, so I can finally start the Xyrem soon. Nothing else has done a whole lot, stimulants don't last very long if at all. Xyrem is the only real answer for me since my condition is so complicated.
I have been taking xyrem for over two years and it has really help me with my narcolepsy with cataplexy. Xyrem is fast acting but it is also short acting therefore you have to wake up and take a second dose in the middle of the night but you get use to it really fast and you won’t even realize that you are waking up to take a second dose, I know that’s how it is for me. And you do get use to the salty taste I know I did. So all I can say is since I began taking xyrem it has improved my life for the good, and I’m only taking one daytime medication now called dexedrine spansule and I’m doing very well.
my son who is 24 now has been taking Xyrem since he was 13 or 14 years old it was quite a process to get him on that medication but it helped tremendously when he started taking it his cataplexy was diminished greatly and he sleeps very well at night although he does wake up every 4 hours which is normal it has become his way of life
2002 I was sent to a sleep clinic that began a double blinded study . I started xyrem Jan 2003, at first it didn’t work. Then in June everyone on the study got the real xyrem .2 people got the fake drug . I am pretty sire I was one of them . At that I was having 48 cataplexy an hour ,at least that’s what computer was telling the Dr. 12 years later using xyrem I might have one or two cataplexy a year . It works ,but still tastes like salt, after 5 years I no longer kringed at the thought of taking it. I can tell that with out now I am sure I would have so drop attacks that I would be in a wheel chair or completely bedridden. So you see , salt tastes ,yuk but I can live with it , so can you.
I have cataplexy with narcolepsy. My sleep study showed that I have 32 brain arousals an hour. Since I have been on xyrem (4years) the cataplexy is much better. With me, if I am not getting the right sleep, I suffer a little bit but not like it used to be.
I know that everyone I have met that takes Xyrem are very happy on it. They all have had much improvement in symptoms and quality of life. I personally cannot take it due to other health problems, but I would give it a try if I could! Just be careful what you mix with it.
I’ve been on Xyrem for a month now, with mixed results. I’ve had to steadily increase the dosage-- am currently up to 5.5 for the first dose, then 3.0 for the second dose. It took a LOT of trial and error and SEVERAL phone calls on my part, to figure out that YES, you CAN mix up your dosage amount this way in hopes that you don’t wake up with a jolt every two hours.
The bonus is the stronger first dose might not even bring on the longest sleep! It might only bring on 1 hour, BUT then you wake up 5 minutes second dose and you’re out like a light! That’s why this dosing situation works for me bc then I sleep for four hours… Sometimes.
And mixing it with Mio REALLY helps the taste!! No sugar involved, covers the salt.
Now if I could figure out the oily skin, sensitive hearing, painful legs, I’d be set!