2 replies to this topic

[cloudtalk]

Hi guys, so I'm hoping someone who has been on xyrem for a while or who knows a lot about it, or anyone, can help me out.

I'm 25 and was diagnosed with narcolepsy over the summer. I've been on it a few weeks now, and it's amazing because for the first time since I can remember, I can stay awake all day. But I've also kind of been freaking out or having a lot of anxiety on it, and I'm not sure why. I mean, everything feels different, my digestion is different, my brain feels different, my skin heals faster... I feel like being able to get deep sleep is changing pretty much everything. And that freaks me out sometimes, like, because I don't know what's going on with my body/mind.

Also, I thought it would make school (still in college part time) so much easier, because I never had trouble learning things, just staying awake long enough to do it. I have classes two days a week, so I spend those days at school, which I commute to. But halfway through the day recently I've been having anxiety attacks or something, I kind of freak out that there's not enough time to do everything and feel like the world is ending, so I go home. It certainly is a strange experience being awake for so long, to me. Maybe that will just take time to get used to?

I feel pretty good and productive in the morning, but by mid-afternoon I start to shut down and feel like I can't focus, and freaked out (that's the best way I can describe it). I never really had problems with anxiety before, maybe because I was just sleepy and depressed all the time. I used to take naps when I felt bad, and I'd usually feel a little better when I woke up. I can't take naps on Xyrem, not in the same way, anyway. I'll just kind of lie there for awhile having sort of waking-REM. Like, I don't think I fell asleep, but my mind kind of wanders to weird places I won't remember. I guess I feel a bit better after that, too.

I've tried different doses, at the lower doses I get worn out earlier in the day, I tried 4 grams 2x and I didn't get worn out, but was depressed and didn't feel like doing anything or interested in anything at all. Now I'm doing 3.75 and 3.25, and I feel okay in the morning, but more freaked out, paranoid, and unable to focus as the day goes on.

I also don't know if I should be on such a high dose of prozac anymore, because the depression could have been caused by the narcolepsy, and now maybe it will just make me feel weirder. Yet another thing, xyrem has been making me even more shaky, which was a side effect that i had with prozac and stimulants too, but worse with xyrem. So i've been taking a small dose of propranolol before work or school so I'm not a shaky mess, though propranalol makes me feel a bit dumb/light headed. I don't take any stimulants anymore because i'm sure they would just make me a shaky mess again.

The sleep doctor who prescribed this stuff for me is pretty hands off/impossible to get in touch with, but thankfully I have an appointment with him next week. I need to find a new psychiatrist about the prozac thing, the one who I was seeing before turned out to be dumb, and mean. I really want to just be able to move on with my life and do well in school, and feel okay.

So many things are changing, and I'm freaked out and don't know what to think. Can anyone relate to this stuff? Any help would be appreciated!

[Hank]

Hi guys, so I'm hoping someone who has been on xyrem for a while or who knows a lot about it, or anyone, can help me out.

I'm 25 and was diagnosed with narcolepsy over the summer. I've been on it a few weeks now, and it's amazing because for the first time since I can remember, I can stay awake all day. But I've also kind of been freaking out or having a lot of anxiety on it, and I'm not sure why. I mean, everything feels different, my digestion is different, my brain feels different, my skin heals faster... I feel like being able to get deep sleep is changing pretty much everything. And that freaks me out sometimes, like, because I don't know what's going on with my body/mind.

Also, I thought it would make school (still in college part time) so much easier, because I never had trouble learning things, just staying awake long enough to do it. I have classes two days a week, so I spend those days at school, which I commute to. But halfway through the day recently I've been having anxiety attacks or something, I kind of freak out that there's not enough time to do everything and feel like the world is ending, so I go home. It certainly is a strange experience being awake for so long, to me. Maybe that will just take time to get used to?

I feel pretty good and productive in the morning, but by mid-afternoon I start to shut down and feel like I can't focus, and freaked out (that's the best way I can describe it). I never really had problems with anxiety before, maybe because I was just sleepy and depressed all the time. I used to take naps when I felt bad, and I'd usually feel a little better when I woke up. I can't take naps on Xyrem, not in the same way, anyway. I'll just kind of lie there for awhile having sort of waking-REM. Like, I don't think I fell asleep, but my mind kind of wanders to weird places I won't remember. I guess I feel a bit better after that, too.

I've tried different doses, at the lower doses I get worn out earlier in the day, I tried 4 grams 2x and I didn't get worn out, but was depressed and didn't feel like doing anything or interested in anything at all. Now I'm doing 3.75 and 3.25, and I feel okay in the morning, but more freaked out, paranoid, and unable to focus as the day goes on.

I also don't know if I should be on such a high dose of prozac anymore, because the depression could have been caused by the narcolepsy, and now maybe it will just make me feel weirder. Yet another thing, xyrem has been making me even more shaky, which was a side effect that i had with prozac and stimulants too, but worse with xyrem. So i've been taking a small dose of propranolol before work or school so I'm not a shaky mess, though propranalol makes me feel a bit dumb/light headed. I don't take any stimulants anymore because i'm sure they would just make me a shaky mess again.

The sleep doctor who prescribed this stuff for me is pretty hands off/impossible to get in touch with, but thankfully I have an appointment with him next week. I need to find a new psychiatrist about the prozac thing, the one who I was seeing before turned out to be dumb, and mean. I really want to just be able to move on with my life and do well in school, and feel okay.

So many things are changing, and I'm freaked out and don't know what to think. Can anyone relate to this stuff? Any help would be appreciated!

So sorry you are having some bumps in the road. I have been on Xyrem for just over two months and I am still on 3.75g x 2. From what you wrote, you have been on Xyrem for a few weeks and were already up to 4g x 2. My sleep doc has emphasized the importance of a gradual buildup to allow my body to adjust to proper sleep and minimize side effects. So far so good. You said you were on Prozac for depression and you say the depression may have resulted from sleepiness, and you are now less sleepy. I would suggest requesting a medication review with your Xyrem doc- it sounds hard to tell the difference between a symptom, a side-effect, and a drug interaction. Too many moving parts for me. When I experienced my own complicated medication dilemma, my goal was to simplify and find my new baseline- and go from there. I would start with my Xyrem doc or consider a second opinion.

[Megssosleepy]

Cloud talk,

Wow its amazing that it has worked so (well?) well for you. Ive been on Xyrem for a couple of months and my EDS is still just as crappy. But I must say I LOVE being able to sleep through the night and wake up right before my alarm.
I have been very very shaky from the stuff and am also on Prozac. When I first started reading your post I was going to suggest Prozac. I think thats why my depression and anxiety didn't get worse from the Xyrem, Ive read that can happen. For the shakes I drink a supplemental drink as soon as I wake... this has helped so much. I feel like its like after a long night of drinking and you wake shaky and ill. So by putting something filling/coating in my stomach really helps!
I also agree with Hank, you went up way to fast! I was upping my dose every week and found that was to fast. now I am at 3.0 and 3.75 and it seems to be the right fit for me. I would try to take it back a few steps, and don't eat 3 hours before taking (this helps it last longer)
I know I didnt address all of your concerns, but I hope this helps a little! Anxiety really sucks and I am sure its even worse when you are not used to it!
Good luck!