66 replies to this topic

[DeathRabbit]

Xyrem must have a latent effect that helps sleep even if it's out of your system. I just had drool sleep during a nap. I never get drool sleep in naps. That was awesome. Drool sleep might be even better than coma sleep. And holy cow, I just hit marine specs in cardio requirements. The restful sleep is making my body respond to exercise so much more effectively. I feel like my power level is over 9000. Downside is I had some severe anxiety issues last night. Kept on having repeated very disturbing visions. I've had this bizarre phobia ever since I was a kid and Fifth Disease where I'm sometimes afraid my skin will somehow become corrupted by a foreign or infectious source. So last night I had recurring disturbing thoughts of my skin manifesting weird horrible stuff, and every time I had an itch, I had to inspect the spot really carefully. That was seriously uncool. It's been better today, but now I'm dreading going to the 4.5 gram dose.

Dammit, and now the stress is back. I have no idea why, I'm not even fixated on anything, but my body is acting like I'm being chased by a tiger. I was just playing a video game when my adrenal glands just started randomly shooting me full of adrenaline.

[SeeBee]

That's great that you're finally getting some real sleep! Significantly less glad about the anxiety...I'm curious though, how is the fogginess now that you've got the anxiety/stress? If you have cataplexy, is it responding yet?

All I can offer on the anxiety front is to keep your doc updated, and not to worry too much about upping your dose just yet. In my humble experience, you've seen the most significant change already, going up to 4.5 just keeps you under longer. Dunno if you've ever tried meditation, focusing your thoughts, or anything like that, but sometimes just taking a deep breath and focusing on how normal and un-freakout-worthy everything is chills me out when I get jumpy. As always though, YMMV.

Hope things continue to improve for you!

[Megssosleepy]

Dammit, and now the stress is back. I have no idea why, I'm not even fixated on anything, but my body is acting like I'm being chased by a tiger. I was just playing a video game when my adrenal glands just started randomly shooting me full of adrenaline.

It takes your body a bit to get used to each dose... this will pass, just takes time. Its a strange adjustment but it will happen eventually!

[Megssosleepy]

Xyrem must have a latent effect that helps sleep even if it's out of your system. I just had drool sleep during a nap. I never get drool sleep in naps. That was awesome. Drool sleep might be even better than coma sleep. And holy cow, I just hit marine specs in cardio requirements. The restful sleep is making my body respond to exercise so much more effectively. I feel like my power level is over 9000. Downside is I had some severe anxiety issues last night. Kept on having repeated very disturbing visions. I've had this bizarre phobia ever since I was a kid and Fifth Disease where I'm sometimes afraid my skin will somehow become corrupted by a foreign or infectious source. So last night I had recurring disturbing thoughts of my skin manifesting weird horrible stuff, and every time I had an itch, I had to inspect the spot really carefully. That was seriously uncool. It's been better today, but now I'm dreading going to the 4.5 gram dose.

Well you are not alone there... don't dread the 4.5 that's where things get good! Get in a habit of telling yourself its the Xyrem... I have an off night maybe once a week... where I can't shut my brain off and lay there awake until I realize I am doing it. In the beginning I had anxiety with the first dose... gosh I felt like bugs were crawling all over me, or that I had weird bumps covering my skin, or bugs on the walls, or that I wasn't breathing enough... that will all go away as your body gets used to it. You may want to try tirating a bit slower if the anxiety is getting to you. It takes time for your system to get used to each of the higher doses. My stomach finally is used to 4.5 and its been over 3 months!

The nights that I find myself balling my eyes out... I take a deep breath remind myself its the Xyrem and I can usually drift to sleep, I try to just not let it get to that point.

One thing I have been noticing is that I have recently started dreaming before falling asleep again... this always helped me fall asleep faster in the past so it helps now as well. My auditory HH have returned as well. Also, Friday night I went out and have a few drinks so I didnt take any Xyrem. The next day I had some crazy REM rebound when I napped and even had SP during one nap twice! NOT COOL!

[DeathRabbit]

@SeeBee-My thinking is maybe a bit clearer, but I don't I've got my schedule down right yet. Gonna try going to bed earlier tonight, see if that helps.

@Meg-Yeah, that's kinda what I'm afraid of. Xyrem, like any other medication, prolly has a law of diminishing returns the longer one is on it. You might try doing 3 doses of 3 grams instead of 2 4.5 gram doses. Same over all amount, but spreading it out like that might get you more SWS, especially since your stomach will be empty and dry as a bone by the third dose.

[DeathRabbit]

Btw, is increased libido a Xyrem side effect? I'm feeling like it's gone up after starting, though it could just be another example of obsessive thoughts due to anxiety. It just makes me feel like I'm a piece of crap and cheating on my gf with my mind.

[Ciraeyna]

I'm so glad I came on the boards today and found this thread. I don't wanna hijack your Xyrem thread, DeathRabbit, but I'm still struggling in the middle of my own Xyrem story and need some encouragement.

I started 2.25g twice a night back in early October. I certainly didn't feel better the next day, or the day after that. I did have about a day and a half somewhere along the way where I actually felt pretty good. Then my doc told me to titrate up to 3g twice a night. I was scared (this med really scares me), but I did it. And I jerked awake in the middle of the night feeling like I was puking. I managed to fall back asleep but kept waking up with the same feeling for about 2h. In hindsight, I think I was just gagging on a little of the stuff and it was really no big deal. But I was totally freaked out by how I felt - you do NOT want to be awake when this stuff is in full gear.

Anyway, that experience has made me so afraid that I'm moving VERY slowly with the dose. I went back down to 2.25g twice a night and stayed there for a few weeks. But I still felt like crap. I took the plunge and tried the 3g x2 again, but this time I ended up with horrible night sweats and waking up constantly. I'm not a PWN who wakes constantly. I sleep like the dead, but it turns out I'm in REM all night and my body just never ever ever wants to wake up. Waking up all night and drenching my sheets wasn't something I could tolerate, so I dropped back to 2.25g x2 and did some more reading. I came across the various threads about supplements, etc. and started trying a few things. After some trial and error, I ended up adding an evening magnesium/potassium supplement to my routine.

Armed with what I hoped would keep my electrolytes more in balance, I went back to the 3g x2. After about 3 days, I experienced that "tiger chasing me" kind of feeling. I could not calm my body down. My mind was calm, but I was physically anxious. It was kinda awful, and I ended up having a huge fight with my Mom about this f'in disease. (She told me at one point that I had apparently not made the severity of my illness clear to her...NOT a good idea to tell someone who is already freaking out and feels that their life is falling down around them. I should have asked her if she even bothered to read the awesome brochure I'd sent her. Anyway, this is definitely a topic for another thread. he he he)

Fortunately, after another 3 days or so, the physical spaz feeling went away and...I...felt...amazing!!! All of a sudden, I was awake! I experienced what it is like to get through a whole day and not have to work at staying awake. It was the most amazing feeling - I was sooo happy. I felt like a deep darkness had finally been lifted from me. It was so so incredible I can't even find the words. I'd fall asleep peacefully, sleep all night, wake up easily and be ready to start my day. I could think and communicate at work. I could talk rationally, keep my emotions in perspective, and not dread tackling the mountain of work piled on my desk. I had the energy to do it.

That lasted for 5.5 days, and then the shoe just dropped. I was fine one minute - and the next minute I was very NOT fine. In the middle of my work Christmas party, I had what I guess I'll call a severe sleep attack for lack of any better way to describe it. All of a sudden, I did not want to be there. I did not want to talk. I wanted to be away from everyone and just sleep. I faked it until I could leave, and then the drive home was one of the worst of my life. I struggled so so hard to stay awake. I did make it home, but this marked the beginning of another period of struggling. As it turns out - TMI alert here - my monthly visitor arrived 2 days later. I was hoping against hope that it was the reason for my downfall, and I hoped that I would get better once it passed. It didn't. 10 days later, and I've been swallowed back up in the dark hole of EDS.

Two days ago, I upped my dose to 3.25g twice a night. I know it's not a big change, but I'm just so scared of this med. I see my doc on Thursday, so hopefully he will have some advice. I have found that the Xyrem nurse and my doc don't really have all the answers. Some of the things they've told me have either backfired, or I just don't agree with. I've learned a lot more by reading this forum and hearing from all of your experiences than I have from them. With that said, I hope my doc will have some good advice for me on Thursday.

For those of you who have gotten to your happy place on Xyrem - what does it feel like? Does it actually last once you get there? I am so incredibly disheartened to feel so awful again after having a few days where I felt so great.

Any advice or words of wisdom to keep us going?

Hang in there DeathRabbit - and keep posting your story. I am eager to keep reading it!!!

(And, to answer your libido question...yes, I am like the sexpot of the century if I don't fall asleep instantly. I worry that I kinda freak my husband out when I get like that, but at least he's reaping the benefits! ha ha!)

[Hank]

Slow and steady wins the race with Xyrem. I started Xyrem in July. I am in a good spot now and it was well worth the wait. I am getting about 4 hrs on each dose. A few nights I will wake up after 2 hrs and go back to sleep until dose 2. Then wake up 2 hrs later and go back to sleep for another 2. Then other nights, I am just up for dose 2 and that's it.

4.5 x 2 was the magic dose for me, but it still has taken a while to settle into it. The lower doses were just more unpredictable. The lower dose did not cause long and strong enough sleep to stave off the stimulating edge Xyrem has, so I only got about 2 hrs of sleep off each dose. I am glad to be past that stage.

So, for me, Xyrem is working well. I no longer take a day time stimulant. It was just too much. I am very happy being medication free during the day. Just some coffee in the morning. And my EDS has vanished. It felt so strange to get used to being awake all day long without fighting my eyelids.

I no longer feel loopy and my body does not buzz (strange feeling I had at low doses) at night. I am wobbly if I get up, but I am ok.


I would recommend not experimenting with changes, especially with 3 doses rather than 2. Be patient and persistent. Any unpleasant experiences while I was adjusting have gone away now. I am used to it and it took some time.

I just want to encourage those of you adjusting to Xyrem that the time and effort is worth it.

[SeeBee]

I would recommend not experimenting with changes, especially with 3 doses rather than 2. Be patient and persistent.

I just want to encourage those of you adjusting to Xyrem that the time and effort is worth it.

Well said, Hank! I really have to agree on not messing with 3 doses. All I see happening there is waking up for another dose earlier than usual, with less overall quality of sleep.

Ciraeyna, I actually started a thread called Xyrem Tips and Tricks that might help you, if you feel inclined to dig it up from like 2 weeks ago. It's got every piece of advice I wish someone had told me when I started Xyrem, and some others chose to pitch in with their experiences as well. As far as how Xyrem feels now, I don't know...even two years into treatment, I feel more awake than I ever have during the day, and because of that I'm much happier and more productive than I was before. It's kind of hard to describe beyond that.

DeathRabbit, my libido did spike a bit, but I'm thinking that for me, it was less side effect, and more being actually awake and having energy, for a change.

[DeathRabbit]

I'm so glad I came on the boards today and found this thread. I don't wanna hijack your Xyrem thread, DeathRabbit, but I'm still struggling in the middle of my own Xyrem story and need some encouragement.

I started 2.25g twice a night back in early October. I certainly didn't feel better the next day, or the day after that. I did have about a day and a half somewhere along the way where I actually felt pretty good. Then my doc told me to titrate up to 3g twice a night. I was scared (this med really scares me), but I did it. And I jerked awake in the middle of the night feeling like I was puking. I managed to fall back asleep but kept waking up with the same feeling for about 2h. In hindsight, I think I was just gagging on a little of the stuff and it was really no big deal. But I was totally freaked out by how I felt - you do NOT want to be awake when this stuff is in full gear.

Anyway, that experience has made me so afraid that I'm moving VERY slowly with the dose. I went back down to 2.25g twice a night and stayed there for a few weeks. But I still felt like crap. I took the plunge and tried the 3g x2 again, but this time I ended up with horrible night sweats and waking up constantly. I'm not a PWN who wakes constantly. I sleep like the dead, but it turns out I'm in REM all night and my body just never ever ever wants to wake up. Waking up all night and drenching my sheets wasn't something I could tolerate, so I dropped back to 2.25g x2 and did some more reading. I came across the various threads about supplements, etc. and started trying a few things. After some trial and error, I ended up adding an evening magnesium/potassium supplement to my routine.

Armed with what I hoped would keep my electrolytes more in balance, I went back to the 3g x2. After about 3 days, I experienced that "tiger chasing me" kind of feeling. I could not calm my body down. My mind was calm, but I was physically anxious. It was kinda awful, and I ended up having a huge fight with my Mom about this f'in disease. (She told me at one point that I had apparently not made the severity of my illness clear to her...NOT a good idea to tell someone who is already freaking out and feels that their life is falling down around them. I should have asked her if she even bothered to read the awesome brochure I'd sent her. Anyway, this is definitely a topic for another thread. he he he)

Fortunately, after another 3 days or so, the physical spaz feeling went away and...I...felt...amazing!!! All of a sudden, I was awake! I experienced what it is like to get through a whole day and not have to work at staying awake. It was the most amazing feeling - I was sooo happy. I felt like a deep darkness had finally been lifted from me. It was so so incredible I can't even find the words. I'd fall asleep peacefully, sleep all night, wake up easily and be ready to start my day. I could think and communicate at work. I could talk rationally, keep my emotions in perspective, and not dread tackling the mountain of work piled on my desk. I had the energy to do it.

That lasted for 5.5 days, and then the shoe just dropped. I was fine one minute - and the next minute I was very NOT fine. In the middle of my work Christmas party, I had what I guess I'll call a severe sleep attack for lack of any better way to describe it. All of a sudden, I did not want to be there. I did not want to talk. I wanted to be away from everyone and just sleep. I faked it until I could leave, and then the drive home was one of the worst of my life. I struggled so so hard to stay awake. I did make it home, but this marked the beginning of another period of struggling. As it turns out - TMI alert here - my monthly visitor arrived 2 days later. I was hoping against hope that it was the reason for my downfall, and I hoped that I would get better once it passed. It didn't. 10 days later, and I've been swallowed back up in the dark hole of EDS.

Two days ago, I upped my dose to 3.25g twice a night. I know it's not a big change, but I'm just so scared of this med. I see my doc on Thursday, so hopefully he will have some advice. I have found that the Xyrem nurse and my doc don't really have all the answers. Some of the things they've told me have either backfired, or I just don't agree with. I've learned a lot more by reading this forum and hearing from all of your experiences than I have from them. With that said, I hope my doc will have some good advice for me on Thursday.

For those of you who have gotten to your happy place on Xyrem - what does it feel like? Does it actually last once you get there? I am so incredibly disheartened to feel so awful again after having a few days where I felt so great.

Any advice or words of wisdom to keep us going?

Hang in there DeathRabbit - and keep posting your story. I am eager to keep reading it!!!

(And, to answer your libido question...yes, I am like the sexpot of the century if I don't fall asleep instantly. I worry that I kinda freak my husband out when I get like that, but at least he's reaping the benefits! ha ha!)

Yeah, the anxiety for me is subsiding too. It's now downgraded to general unease, haha. I think I'll stay at the 3.75 through the holidays, just so I don't like go nuts and burn everyone's presents or something, haha.

[DeathRabbit]

How long do you Xyrem takers normally sleep? Before Xyrem, I was an 8-9 hours type of guy. Now, It's hard to get much more than 6. How do you guys do your dosing? It seems like I will wake up 3 hours after my 2nd dose no matter what. So I'm getting higher quality sleep, but less of it. I won't say it's zero sum gain, but right now, it's not seeming to be worth the side effects unless I can extend my sleep time. I need at least 7.5 because that's how much I used to get before the coming of the derp.

[Hank]

How long do you Xyrem takers normally sleep? Before Xyrem, I was an 8-9 hours type of guy. Now, It's hard to get much more than 6. How do you guys do your dosing? It seems like I will wake up 3 hours after my 2nd dose no matter what. So I'm getting higher quality sleep, but less of it. I won't say it's zero sum gain, but right now, it's not seeming to be worth the side effects unless I can extend my sleep time. I need at least 7.5 because that's how much I used to get before the coming of the derp.

When it comes to starting Xyrem, sleep is all about quality and not duration. Eventually, you will have both. This is how it made sense to me: I was so accustomed to functioning with such low sleep efficiency, 5-6 hours of Xyrem sleep was better quality than a full night of Narcolepsy sleep. It is like someone suffering from starvation- they need to work up to a steak and potatoes. Let your body adjust to the quality of Xyrem sleep and the duration will work itself out over time.

[DeathRabbit]

When it comes to starting Xyrem, sleep is all about quality and not duration. Eventually, you will have both. This is how it made sense to me: I was so accustomed to functioning with such low sleep efficiency, 5-6 hours of Xyrem sleep was better quality than a full night of Narcolepsy sleep. It is like someone suffering from starvation- they need to work up to a steak and potatoes. Let your body adjust to the quality of Xyrem sleep and the duration will work itself out over time.

Oh, I'm sticking with it for sure. Because if I give up on this there's nothing left to try and my life is never going to get better. So I'm gonna give this every chance to work and if it doesn't, well, then judging by the rate of my deterioration, the rest of my life will be *BEEP*salt.

[SeeBee]

How's your sleep hygiene? I too could only squeak out 6 hours, till I forced a pretty major overhaul of my daily/nightly routine. I get about 7.5 hours a night now, sometimes more if I've been extra good.

[DeathRabbit]

How's your sleep hygiene? I too could only squeak out 6 hours, till I forced a pretty major overhaul of my daily/nightly routine. I get about 7.5 hours a night now, sometimes more if I've been extra good.

About as good as it can be when you've got a roommate that wakes up at 5AM, lol. Sometimes, I think my issues would be a lot better if I lived in a cabin in the woods. I may just have to start sleeping earlier and waking up earlier to sync myself with the world, because cars start blasting by my apartment by 6:30

[Megssosleepy]

How's your sleep hygiene? I too could only squeak out 6 hours, till I forced a pretty major overhaul of my daily/nightly routine. I get about 7.5 hours a night now, sometimes more if I've been extra good.

The lower doses make it very very hard no wait impossible to get the full 8 hours... until I got to 4.5 I was complaining daily on here about getting 5, 6, 4 hours of sleep a night. Now I get a solid 8 sometimes 7.5 if I didnt get to bed at the right time.

The lower doses are very unsteady... some nights I panicked my way through the first dose, or sleep only an hour, it was a roller coaster for sure. I woke with the shakes and just felt like yuck! Magnesium works well for the shake BTW.

Once you get to 4.5x2 all the nastyness of Xyrem goes away, well except the night sweats. With the night sweat I notice they are worst certain times of the month, and if I ate something heavy or salty or had a glass of wine. Our skin is the livers back up... while on Xyrem our livers are working to digest that so our skin takes over... so the reason we sweat is just our bodies way of detoxing from the day. When I take my second dose I change my T-*BEEP* and drift right back to sleep. I also found cotton sheets are not the way to go... they stay damp longer, the sheet I got dry super fast!

Like Hank I have decided to forgo the Stimulants... I just cant tolerate them.

For me EDS is still there but doesnt hit me nearly as hard... the sleep attacks are more like walking through fog rather then trying to walk through a brink wall. Different times during my cycle are definitely hard. I think this is due to iron levels, hormones, as well as other factors. I am trying to learn and take cues from my body to see what I can do to fix the rough days.

For anyone tirating I will echo what others have said... go slow and steady, dont go messing with the doses. Also the bad nights are caused by your own mind not the Xyrem. Try staying calm and telling yourself that its not going to hurt you... the more you remind yourself that everything will be okay the less bad nights you will have. If you go to bed thinking of the bad night before you will again have a bad night! I know this from personal experience. The more I let myself freak out the worse everything was! Now if I start thinking the wrong way. I stop in my tracks and tell myself to stop, and to think warm thoughts and then drift off to sleep.

Dont give up, the light is at the end of the tunnel you just have to crawl to get there!

[Megssosleepy]

When it comes to starting Xyrem, sleep is all about quality and not duration. Eventually, you will have both. This is how it made sense to me: I was so accustomed to functioning with such low sleep efficiency, 5-6 hours of Xyrem sleep was better quality than a full night of Narcolepsy sleep. It is like someone suffering from starvation- they need to work up to a steak and potatoes. Let your body adjust to the quality of Xyrem sleep and the duration will work itself out over time.

EXACTLY! "like"

[SeeBee]

About as good as it can be when you've got a roommate that wakes up at 5AM, lol. Sometimes, I think my issues would be a lot better if I lived in a cabin in the woods. I may just have to start sleeping earlier and waking up earlier to sync myself with the world, because cars start blasting by my apartment by 6:30

Ah, fair enough. Well the good news is, you might be able to join the consensus of people who move up to 4.5g and it works just fine without changing anything; the other good news is, if you're weird like me and still manage only 6 hours after a few months on 4.5g, you've got more options.

And hey, you'd be surprised how un-restful cabins in the woods can be. They creak in creepy ways at night, and they've got some loud-ass birds in the morning

[DeathRabbit]

Ah, fair enough. Well the good news is, you might be able to join the consensus of people who move up to 4.5g and it works just fine without changing anything; the other good news is, if you're weird like me and still manage only 6 hours after a few months on 4.5g, you've got more options.

And hey, you'd be surprised how un-restful cabins in the woods can be. They creak in creepy ways at night, and they've got some loud-ass birds in the morning

You know, if it weren't for my love of music, I'd seriously consider deafening myself j/k but the thought of not ever hearing anything to wake me up is so tempting.

[SeeBee]

You know, if it weren't for my love of music, I'd seriously consider deafening myself j/k but the thought of not ever hearing anything to wake me up is so tempting.

I know right? I live in an apartment with train tracks just across the street, and somehow never quite got used to it. Nine years later, the horn at 3:30 AM still scares the snot out of me on a regular basis. On the upside, it makes sure I never miss my second dose, haha.

All joking aside though, white noise is awesome for that. If you're not into "traditional" white noise, a cheapo table fan with a couple of power settings works just as well. I've got a little one I picked up for like 20 bucks at Target, and that pointed at the wall on "low" drowns out everything but the train.