4 replies to this topic

[karakedimarie]

I'm a 20 yr old female and i was recently diagnosed with N and Cataplexy. My doctor started me on ritalin (lowest dose) and the afternoon of my first day of taking it every muscle began to hurt and then my joints became unbearably painful. apparently this is a rare side effect that demands the discontinued use of Ritalin. But even if that didnt happen, even on the lowest dose it gave me near immediate horrible headaches!
Pesonally, I dont like the idea of not sleeping well and then having to drag myself out of bed after who knows how many alarm clocks, only to then fill my body with stimulants to combat the terrible nights sleep! I hear that with XYREM you wake feeling pretty refreshed (that sounds like heaven!) i understand that often tmes stimulants are still needed but at a much lower dose...
I go back to my doctor tomorrow and after some long hours of research I really want to ask to try Xyrem! My questions:
Is anyone on Xyrem? How do you like it?
I know that they often prescribe Provigil alongwith (But that can mess with hormonal birth control) does anyone know what else they might use instead of Provigil?

[Lovemyhusband]

I don't have any answers for you concerning drugs but I do want to caution you on thinking Xyrem will be your cure all. It sounds like you are at a cross road and really need something to help you out. Xyrem could very well be great for you, but with all drugs they work different for each person. Just because Mr x has great results with it doesn't mean you will and vice versa. The drugs that help with Narcolepsy are just as unpredictable at times as Narcolepsy itself.

That's not to deter you from asking for it, you should definitely explore all avenues. It's just that I would hate to see you set on Xyrem being the answer and have it not work at all. You should be able to search this site for all messages that include xyrem in the title. Check it out and keep us posted on your progress. Good luck!!

[karakedimarie]

I went to my doctor yesterday and we are going to try the xyrem and while we wait Im on Aderall and imiprimine. I know that Xyrem is no cure and may not even work for me! But it is hard not to get excited. I have terrible reactions to many many drug compounds and therefore other drugs in the same families. (I minored in organic chemistry for a while because of this). Because Sodium Oxybate (Xyrem) is so different in its chemical composition from anything I've tried or been put on in the past, I am hoping that it should be ok. Also, (kind of strange reason, but this is true!) My dad was an undiagnosed narcoleptic. He had his first signs of EDS in High school (as did I). His first episode of sleep paralysis at 17 (as did I). We had HH and sleep paralysis at the same frequency and such. Probably why we were so close, he understood that when I was tired, it wasn't something I could control, and he could recognize my HH and even when I was having sleep paralysis. My father had many, many other health issues and was put on many drugs for different reasons. And every drug that I've tried that didn't work (related to my narcolepsy or just over the counter drugs) I've asked my mom and I hear "oh, Your dad had that same bad reaction!" every time! I think its pretty funny! Anyway, what I'm getting at is that my dad used GHB recreationally once or twice and nothing bad! Funny thing is he used it to sleep better! (little did he know, he was using it correctly for his condition!)
But I sincerely thank you for your reply. It's true, I do need to keep myself in check, I understand that this is a finicky condition and it can take some time to find a good combination of drugs for each patient (I just forget that sometimes!) So thank you so much!

[daffodil]

Many people can take just xyrem and not need the provigil anymore.  For me it is nice not to need 12+ hours of sleep a day.  I do feel a little wound up on it, though.

[Prfctlilangel30]

I'm a 20 yr old female and i was recently diagnosed with N and Cataplexy. My doctor started me on ritalin (lowest dose) and the afternoon of my first day of taking it every muscle began to hurt and then my joints became unbearably painful. apparently this is a rare side effect that demands the discontinued use of Ritalin. But even if that didnt happen, even on the lowest dose it gave me near immediate horrible headaches!
Pesonally, I dont like the idea of not sleeping well and then having to drag myself out of bed after who knows how many alarm clocks, only to then fill my body with stimulants to combat the terrible nights sleep! I hear that with XYREM you wake feeling pretty refreshed (that sounds like heaven!) i understand that often tmes stimulants are still needed but at a much lower dose...
I go back to my doctor tomorrow and after some long hours of research I really want to ask to try Xyrem! My questions:
Is anyone on Xyrem? How do you like it?
I know that they often prescribe Provigil alongwith (But that can mess with hormonal birth control) does anyone know what else they might use instead of Provigil?

Hey!!!
When I first went to my doctor she put me on provigil...like, 2 days later I got my period when I wasn't supposed to! It totally "blocked" my birth control from working.
I was SOOO mad...it took me so long to get to a doctor for a sleep study and finally get a diagnosis and the doctor gives me the wrong medicine. I figured she would have known the side effect of provigil and BC pills?! So with me, it messes with my birth control...
Even before that, I was trying ritalin out... which actually helped me stay awake (but not for a long amount of time) but then made me really nauseas after like 2hrs of taking it. I couldn't deal with nausea everyday so I had to stop taking that.
Finally, I am taking 10mg. of adderall 3times a day which helped me stay awake throughout the day but after 4 months passed, the effectiveness wore off. Now I have to double up almost 3 times a day, sometimes I take 3 in the morning... I have no problems falling asleep at night. My only problems STILL is not being able to wake up in the morning...I have like 5 alarms going off plus, my boyfriend hitting and yelling at me and I still can't wake up. It's horrible!
My doctor isn't too much help, I am the one that suggested adderall and when I went to her today, she didn't really talk to me or try to help me out too much when I told her my symptoms are getting bad again. This is also the 2nd time I have asked her about what I could do to make waking up in the morning easier. Her main concern was giving me a pill to help stop smoking that I would have to see a behavioral therapist for because some people committed suicide on that pill!!! wtf?! lol. I don't know what else to do or try... I can't go to another doctor in my area because every other sleep disorder place does not take my insurance. Could you tell me about Xyrem? Is it a stimulant? Is it helping you out?
How about waking up in the morning, do you have problems waking up? Does Xyrem help with that at all?
Sorry about the super long story, I saw the topic "I need help" and thought, I need alot of help with this because I am still a newbie as well. lol... maybe you could help me out a little? Thanks!!
-Kelly