66 replies to this topic

[DeathRabbit]

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.

I have an app for my android, but it's difficult to get it loud enough to drown stuff out, but not loud enough to keep me awake.

[SeeBee]

I have an app for my android, but it's difficult to get it loud enough to drown stuff out, but not loud enough to keep me awake.

You young'uns and your newfangled tech-knowledge-y! Not really, I'm just stubborn and sorta poor lol. I'm bad enough about texting, I don't trust myself with apps and an internet connection.

Even a little bit of white noise can help, though. I probably shouldn't have used to the phrase "drown out," as I can still hear a lot of what goes on if I'm awake (and you definitely don't want it drowning out your smoke alarm,) but when I'm asleep, everything else is muffled enough that it doesn't wake me. As you said, it's kind of a hard balance to strike noise-wise, but it might be worth playing with to see if it helps.

[DevonKay]

I'm glad this thread exists! Last night was my first night on Xyrem at the 2.25g dose. I didn't sleep much and just felt sorta high. I feel disgusting today (extremely exhausted, headaches, etc). I'm glad I'm not alone in having a bad first night experience. I'm just ready for it to get better!

I believe my doctor wants me to go up to 4g and stop. Is that a common dosage? It just seems like a lot of people go higher than that.

And I'm sorry if that's already been addressed. I can't focus long enough to read everything here right now. How sad is that?

[SeeBee]

Congrats on taking the plunge! 4g isn't super uncommon; most people go from 3.75g to 4.5g, which is considered the max dose, but some people (like me) don't react so well to such big jumps in dosage. You can always check back with him when you get close to that, and make sure that's what he meant.

Let us know how it continues to go; hope you start feeling better soon!

[DevonKay]

Congrats on taking the plunge! 4g isn't super uncommon; most people go from 3.75g to 4.5g, which is considered the max dose, but some people (like me) don't react so well to such big jumps in dosage. You can always check back with him when you get close to that, and make sure that's what he meant.

Let us know how it continues to go; hope you start feeling better soon!

I guess I made it sound like I'm going immediately from 2.25 to 4, but it's gradual. I'm on 2.25 for two weeks, and then I increase gradually each week until I'm up to 4.

And thanks!

[SeeBee]

Oops, I wasn't entirely clear either lol. I meant that you have a little while to figure it out, or check in, so you know for sure he meant you to end at 4g. Yeah, going from 2.25 straight to 4g would be a bit of a shock

I did have trouble moving my doses up even that gradually; they had to knock me from 4.5g back down to 4g after the first couple of days at the former, because it just wasn't playing nice with me. Sorry for the confusion!

[Ciraeyna]

Hi guys,

My doc had me go up to 3.75g two days ago (from 3.0g for 2 weeks, and 3.25g for a couple days). I think going up is the right thing to do, but I just don't feel well. I'm kinda okay when I wake up, but then I start feeling lousy. I have no appetite, and if I manage to eat I can't put much down. I feel heavy in my chest, kinda like it takes more effort to breathe or something, and my back really really hurts. I'm also getting headaches, usually towards evening. I can't even really describe most of what I feel - it's just "unwell."

I'm only getting about 2.5h sleep on the first dose and around 3h on the second. I'm sleeping like the dead when I am asleep, so I know it's working. But I'm still getting pretty tired by the afternoon and really dragging by night.

Did any of you go through this kind of "feeling unwell" stuff? I know people say they have to adjust to Xyrem, but I haven't read anything more specific - or at least I don't remember if I read it. It sure would help to know if any of you Xyrem success stories experienced stuff like this and got to the other side!

With how I feel right now, the thought of going to 4.5g is really unappealing.

Thanks so much for this thread and all the great input,
Cira

[Hank]

Hi guys,

My doc had me go up to 3.75g two days ago (from 3.0g for 2 weeks, and 3.25g for a couple days). I think going up is the right thing to do, but I just don't feel well. I'm kinda okay when I wake up, but then I start feeling lousy. I have no appetite, and if I manage to eat I can't put much down. I feel heavy in my chest, kinda like it takes more effort to breathe or something, and my back really really hurts. I'm also getting headaches, usually towards evening. I can't even really describe most of what I feel - it's just "unwell."

I'm only getting about 2.5h sleep on the first dose and around 3h on the second. I'm sleeping like the dead when I am asleep, so I know it's working. But I'm still getting pretty tired by the afternoon and really dragging by night.

Did any of you go through this kind of "feeling unwell" stuff? I know people say they have to adjust to Xyrem, but I haven't read anything more specific - or at least I don't remember if I read it. It sure would help to know if any of you Xyrem success stories experienced stuff like this and got to the other side!

With how I feel right now, the thought of going to 4.5g is really unappealing.

Thanks so much for this thread and all the great input,
Cira



Yes, "unwell" is a good description. I had some additional stressful events and some vitamin deficiencies at the same time so I did not know what to attribute my unwell feeling. Xyrem was my best hope so I was/am reluctant to attribute anything bad to Xyrem.

However, I can honestly say Xyrem has been a quality-of-life saver for me. 4.5 x2 has been a blessing. It has taken me some time to get there, but it has been worth it. I no longer need a stimulant during the day. I just enjoy coffee in the morning and that is it. This change did not happen over night. I did begin to notice a difference week by week. It was awkward balancing the amount of stimulant as my need for it decreased. There were many days where I felt overstimulated and I did not like that at all, so I began reducing.

I am thankful to be at the point where Xyrem has chipped away at my sleep debt. I am getting sufficient restorative sleep each night- some better than others. I feel naturally awake during the day- not artificially propped up. I did not know it was possible to feel this way- and I am just starting to trust that I am feeling well. To be honest, this "well" feeling was so foreign to me, it thought there was something wrong. It was like going from snow-shoes to ice skates (for lack of a better analogy). I am accustomed to living with so much more resistance that feeling well was startling.

Glad to say, I am getting used to it. I was always fighting my eye lids- then suddenly I was not. It actually felt like there was something wrong with my eyes- as though my ever-present eyelids were gone missing. I remember years ago finally getting my braces off my teeth. My teeth felt so HUGE and SMOOTH after the braces were gone. In a similar way, now that my EDS is gone, feeling awake has felt so foreign- it is just hard to describe. When we first got a flat screen HD TV, everything seemed to big and clear and sharp. We had lived with the old TV for years and always liked that, but HD was sooo much more. So, I feel like the world from my perspective has just been upgraded to High Definition with surround sound.

I hope this makes sense, it really is hard to describe. I hope you will get to your own place that is almost indescribable.

[DeathRabbit]

I wish I could withdraw from society. I feel like I could be fine if I slept from 8AM to 4PM. Here, I am, once again, awake at 3AM. So glad my Christmas is going to be ruined by this bull*BEEP*. :angry:Hope you all have a much more merry Christmas than mine!

[Ciraeyna]

Heya DeathRabbit,

Sorry to hear you had a crappy night. I hope the rest of your day got a little better. I ended up sleeping for 2h right after we did presents, since I was too tired to do much else. It sucks - as a Mom, it's really depressing to sleep away part of Christmas Day when the rest of my family is having fun with all their gifts. Guess I'm feeling pretty sorry for myself today.

I just dunno about this Xyrem stuff. I find that every day and every night is different, so I never know what to expect nor do I have a chance to learn how to cope because it's so inconsistent. I am hoping that it's because 3.75g x2 is still the "middle" dose. I know you guys said it got better at 4.5g x2, but it's hard to believe all this *BEEP* is going to go away. I feel like 3.75g x2 has done absolutely NOTHING for me. I had a few good days on a lower dose, but so far I'm really disappointed with this one.

Am I doing something wrong??? I feel like I'm being as consistent as I can - I go to bed at exactly the same time every night. No matter how tired I am (and some nights I'm practically falling over), I stay up til my appointed bedtime. I eat supper about 5h before my bedtime, and if I have anything after that it's a VERY light snack (like part of an apple or a mug of hot chocolate) that I finish at least 2h before my bedtime. Some nights, I can feel the med working shortly after I take it. Other nights, nothing. Last night, I felt it but all it did was make me awake and talkative. Ugh. I finally fell asleep about an hour and a half after I took it. And I woke up about 2hours later, awake, so I took the 2nd dose. That got me about 3 more hours. I don't know about the rest of you guys, but the Xyrem nurse is wrong as far as I'm concerned. 6 hours or less of "good" sleep is still not enough to make me feel okay. I feel like crap, and all I can think about is how I need to sleep again.

As for my little snack in the evenings, I am really hungry by the time I go to bed if I don't eat *something*. And whatever caffeine is in the hot chocolate I'm not worried about since caffeine has never kept me awake. Like someone else said, I could probably drink a couple energy drinks and still fall asleep.

So...what gives? Is my snack screwing me up? Should I be doing something different to get this stuff to last more than 2.5-3hours? Or am I just gonna have to be patient and hope that 4.5g x2 will make it all better? What kind of bedtime routines do you guys have? I'm obsessing over everything, trying to get this damn stuff to work. It's all driving me crazy and none of it seems to help gain me any consistency.

Not ready to throw in the towel just yet, but damn it - I'm sick and tired of being sick and tired.

On a happier note, and with sincere good wishes to you all: Merry Christmas and here's hoping 2013 will be good to us!
Cira

[DeathRabbit]

Heya DeathRabbit,

Sorry to hear you had a crappy night. I hope the rest of your day got a little better. I ended up sleeping for 2h right after we did presents, since I was too tired to do much else. It sucks - as a Mom, it's really depressing to sleep away part of Christmas Day when the rest of my family is having fun with all their gifts. Guess I'm feeling pretty sorry for myself today.

I just dunno about this Xyrem stuff. I find that every day and every night is different, so I never know what to expect nor do I have a chance to learn how to cope because it's so inconsistent. I am hoping that it's because 3.75g x2 is still the "middle" dose. I know you guys said it got better at 4.5g x2, but it's hard to believe all this *BEEP* is going to go away. I feel like 3.75g x2 has done absolutely NOTHING for me. I had a few good days on a lower dose, but so far I'm really disappointed with this one.

Am I doing something wrong??? I feel like I'm being as consistent as I can - I go to bed at exactly the same time every night. No matter how tired I am (and some nights I'm practically falling over), I stay up til my appointed bedtime. I eat supper about 5h before my bedtime, and if I have anything after that it's a VERY light snack (like part of an apple or a mug of hot chocolate) that I finish at least 2h before my bedtime. Some nights, I can feel the med working shortly after I take it. Other nights, nothing. Last night, I felt it but all it did was make me awake and talkative. Ugh. I finally fell asleep about an hour and a half after I took it. And I woke up about 2hours later, awake, so I took the 2nd dose. That got me about 3 more hours. I don't know about the rest of you guys, but the Xyrem nurse is wrong as far as I'm concerned. 6 hours or less of "good" sleep is still not enough to make me feel okay. I feel like crap, and all I can think about is how I need to sleep again.

As for my little snack in the evenings, I am really hungry by the time I go to bed if I don't eat *something*. And whatever caffeine is in the hot chocolate I'm not worried about since caffeine has never kept me awake. Like someone else said, I could probably drink a couple energy drinks and still fall asleep.

So...what gives? Is my snack screwing me up? Should I be doing something different to get this stuff to last more than 2.5-3hours? Or am I just gonna have to be patient and hope that 4.5g x2 will make it all better? What kind of bedtime routines do you guys have? I'm obsessing over everything, trying to get this damn stuff to work. It's all driving me crazy and none of it seems to help gain me any consistency.

Not ready to throw in the towel just yet, but damn it - I'm sick and tired of being sick and tired.

On a happier note, and with sincere good wishes to you all: Merry Christmas and here's hoping 2013 will be good to us!
Cira

I know that feel. It seems like the Xyrem has had a completely different effect on me than most ppl. Many anecdotes said it was like knock out drops or something. I mean it has to have a more pronounced effect on some or it wouldnt have bee na very good date rape drug. Evidently, if someone slipped some GHB in my drink, I'd hardly lose a step. I'm gonna be patient like Hank said and continue on for now. I'm at the 4.5 now and I will stay at this dose for a month. If I feel no positive change by then, I'm going back to downing 5htp with a double shot of liquor. That made me sleep. I suppose horse tranqs are out of the question for N? I need something that just completely throttles me. Damn my weird stupid brain and its bizarre reaction to drugs.At this rate, I feel like I'm not going to make it thru 2013 without a complete breakdown. And those tend to be career killers.

On the caffeine note, I would suggest giving it a trial go with no caffeine for a few days. I've noticed that caffeine has a more pronounced effect on me with the Xyrem for whatever reason. In fact, the first week I was on the stuff, a coke would give me a panic attack. I'm gonna get rid of caffeine too methinks, just to give this every possible chance to work.

[DeathRabbit]

Well, I've been off the Xyrem for 2 days now and will be for one more. Not my choice, SDS keeps screwing up my order. I am about to be seriously upset, as this has probably set me back weeks in terms of progress. I'll have to start back at a lower dose, no doubt.

[DeathRabbit]

Okay, I've been back on the Xyrem for about 5 days now. The first few days back were pretty rough but I'm starting to feel the positive effects again. I still feel kinda spaced out and dissociative. Also, I seem to be havign trouble with long term memory. Hoping that will clear up.

[Megssosleepy]

Okay, I've been back on the Xyrem for about 5 days now. The first few days back were pretty rough but I'm starting to feel the positive effects again. I still feel kinda spaced out and dissociative. Also, I seem to be havign trouble with long term memory. Hoping that will clear up.

I was having trouble for about 2 months after getting up to 4.5, now my memory is improving... like I can say a 6 digit number and remember it long enough to type it where it needs to be... in the past I would have to do 2 numbers at a time lol. Another example is, I run this program and have to save it each time using the next number... now even if its the next day I can remember what the last number was instead of going back and looking... I know these are small steps but its nice to see improvement.

Also, I no longer take any adderall... I cant say that I dont need it, gosh some days I almost give in... I still get sleep attacks but they are more like a deep fog then a slap myself in the face to stay awake kind of thing, and they happen less and less!

Not wanting to repeat things I have said a million times...

But I felt like complete ass when starting this drug even when I reached the max dose... it really took a good long while to not have stomachaches/headaches/and just feeling unwell... it took even longer to start getting a solid 7 hours of sleep... some nights I get 8 hours but its normally 7ish.

Xyrem is hard because we all want to feel better right away! I started in the end of July I think... and I am just now seeing a difference in my EDS... and I know a few months from now I will feel even better even its just a tiny bit at a time. I dont think I will ever get to feel like a normal person, but any improvement is fine by me!

[DeathRabbit]

I was having trouble for about 2 months after getting up to 4.5, now my memory is improving... like I can say a 6 digit number and remember it long enough to type it where it needs to be... in the past I would have to do 2 numbers at a time lol. Another example is, I run this program and have to save it each time using the next number... now even if its the next day I can remember what the last number was instead of going back and looking... I know these are small steps but its nice to see improvement.

Also, I no longer take any adderall... I cant say that I dont need it, gosh some days I almost give in... I still get sleep attacks but they are more like a deep fog then a slap myself in the face to stay awake kind of thing, and they happen less and less!

Not wanting to repeat things I have said a million times...

But I felt like complete ass when starting this drug even when I reached the max dose... it really took a good long while to not have stomachaches/headaches/and just feeling unwell... it took even longer to start getting a solid 7 hours of sleep... some nights I get 8 hours but its normally 7ish.

Xyrem is hard because we all want to feel better right away! I started in the end of July I think... and I am just now seeing a difference in my EDS... and I know a few months from now I will feel even better even its just a tiny bit at a time. I dont think I will ever get to feel like a normal person, but any improvement is fine by me!

I think I am going to back my dosage back down. The 4.5 is just perhaps too righteous for me. It feels like I never completely wake up, and thats what brings on the terrible cluster headaches.

[DeathRabbit]

I haven't updated in a while. Now, it seems like the headaches are abating and the Xyrem may actually be giving me some significant energy. The bad part is depression and znxiety with manic episodes interspersed. I haven't been this badly depressed in several years. My pshrink gave me some lamictal to try to stabilize my mood. I didnt want to take it since there's a 0.1% chane it will literally eat my skin off, but I can't live like this. I'm heading for a career ending crash and burn if I dont do something.

[cloudtalk]

For me taking xyrem is sort of a balancing act. I've had to keep my dose at 3g (x2) because the anxiety and depression get more and more unmanagable at higher doses. I already took antidepressants. Even at 3 grams I feel much more anxious than I used to be, but for me it is at a level that seems preferable to always being on the verge of sleep. I have to try to balance the amount of wakefulness I need with the amount of anxiety I can handle. Of course you should talk to your doctor, but maybe if you are starting to have more energy it could be because you've caught up with your sleep debt. So, you could possibly go back to a lower dose for a while, for the sake of your mental health, and still have more energy than you used to. And if you wanted to raise it again you could do it more slowly.

 

That's what I've done, but I really don't know what's right. I feel like no one knows what the right course of action is, and even the doctors disagree about it. Maybe I should have stuck with the higher dose to see if the anxiety eventually subsided. It didn't seem like it was going to, but if it would have I would be in a better place than I am now. I'd like to hear all you guys' thoughts on that.

 

At the lower dose of xyrem, I still get a lot of brain fog during the day, especially after the first six hours of being awake. My mind and body still feel exhausted, but I don't get the uncontrollable sleepiness part anymore. I still have to take naps and ritalin if I want to accomplish anything beyond that first 6(ish) hours. I think overall I am becoming a more stable person than I was before treatment, but the progress is very slow. When I started xyrem I thought I'd be ready to go back to school right away. But things got worse before they got better. I've been taking xyrem for about 5 months now, and I think I will be lucky if I feel well enough to go back to school in the summer. 

 

Right now, I think it is important to try to balance all the symptoms and side effects and be as healthy as possible in every way you can. I think this process of experimenting to figure out how to get myself as functional as I can be will continue for a very long time, or forever. There are so many variables to work through. It sucks that this happened to us, but I have hope for things to get better, if we can be patient enough with the process.

[DeathRabbit]

^That post is helpful. You sound like you are in an identical situation. I actually had a small come apart at work today, but I mamaged to keep my cool and let my boss know I had to take an extended lunch break. Now I'm back and semi functional, but yea, I'm thinking I will have to back down the dose majorly. But the problem then is I only sleep like 6 hours, ugh. You are so right. It sucks that this happened to us. I want to know who to punch for Narcolepsy ruining our lives.

[cloudtalk]

Yeah, but what also sucks is, there is no one to punch. I've been going to therapy and stuff to try to help me to deal with this. I think narcolepsy is kind of a game changer. I don't know if I'll ever be able to be normal at all. Reading Julie Flygare's memoir helped me come to terms with it a bit. I'd really recommend that anyone with narcolepsy read it. It's a quick and easy read, and I think it helps put narcolepsy in a good perspective. It also feels good to see someone else go through a similar process and come out okay. It takes her a really long time to come to terms with her diagnosis. I think she's had it for 4 or 5 years now and is still probably coming to terms with it in some ways. She realizes that she can't be the same person or have the same life she had expected, and then she realizes that's not necessarily a totally bad thing.

 

So, yeah, you could say that narcolepsy ruined your life. It removes the possibility of a life you might have had if you didn't have narcolepsy. But you can still have a really good life, and it won't necessarily be qualitatively worse than the alternative, which is impossible to know anyway and pointless to think about because it doesn't exist. I think we all have a lot to be grateful for, and it all depended upon thousands of random circumstances we happened upon in life, and for which we mostly don't have anyone to punch in the face and/or thank. Everyone in the world just has to make the most of their situation, despite the many things we can't control. I guess that maybe some people end up with better or worse situations overall, but when you think of your own compared to everyone else in the world, you might not be so bad off. That's what I tell myself, anyway. I hope that makes sense.

[DeathRabbit]

Or I could put a big N on my punching bag and wail on it, haha. Yea, it's hard for me to accept my limited cognition because I was an out of shape, weird, social outcast most of my life. And it sucked. But I always told myself at least I've got my mind. That's something that can't be taken away from me, and one day I'll come on top of everyone who ever looked down on me. It just comes as a shock that it was hubris. That my mind was not immutable. That nothing is. Oh well. Maybe I'll learn to accept my derpy existence someday. But at the same time, I don't want to stop fighting. I'm just afraid that if I become complacent I will give up the part of me that wants to stare reality in the face and say "No"