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How To Be On Xyrem


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#1 cloudtalk

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Posted 21 September 2012 - 01:05 PM

So, being on xyrem has been a crazy experience, and I've only been on it for a month. I have a tendency to think about things too much, and I'm trying to not do that, but I still want to figure this stuff out, so I've been reading about it and experimenting with it and whatnot. And I want/need so badly for this stuff to work. These are some things I think might help the experience go more smoothly. You should add anything you think might help! Maybe we can help each other :)

[Raise your dose very slowly and carefully. We all want to be better now, but I don't think it can work that way. You have to be patient and pay attention to what your body is telling you. I think it is important to let your body adjust gradually, you can't just suddenly not be narcoleptic anymore. My doctor and I raised my dose too quickly at first, and I was so hopeful about getting to the optimum dose as soon as possible that I was ignoring the how much side effects I was having were actually hurting me. So I had to start back from the beginning, going up much more slowly this time.]

-Get nutrition shakes (e.g. ensure plus) and drink that when you wake up, along with a calcium-magnesium supplement and a B-complex vitamin, and have a banana or orange juice (something with potassium). The nutrition shake will ensure (lol) that your body has what it needs in the morning. Because you are getting 75% of your daily value of sodium or something like that with the xyrem, you need to balance that with your other electrolytes, which are magnesium, calcium, and potassium. So cut down on sodium in your diet, take a magnesium-calcium supplement, and since good potassium supplements don't exist for some reason, eat potassium rich foods (bananas, apricots, white beans, orange juice, sweet potatoes... look it up).

[You should probably reduce your sodium intake. Most people eat more sodium every day than they should, anyway, and with xyrem on top of that you could be getting way too much. Too much sodium can lead to high blood pressure and inflammation. I think the night sweats and oily skin could be related to your body trying to get rid of excess sodium, but that's just my theory.]

-Medicines work differently for different people, and you should try to figure out how it works best for you. Stimulant work somewhat differently for me when I'm on xyrem. I've found that prescription stimulants can wake me up for a while, but also can make me really shaky and kind of manic. Coffee or tea seem to be milder, while still helping me feel more alert/awake. I've found that I can drink less caffeine and it's more effective after being on xyrem. So, I usually take ritalin to get stuff done at home, and drink a cup of tea or something if I'm going to be out interacting with people/at work. Be careful not to mix caffeine and prescription stimulants, though. Ritalin lasts about 4 hours, and caffeine lasts longer. So I wait 4-6 hours before taking a ritalin if I had caffeine and vice versa.

-You might still need naps, though they are different from the ones you took before xyrem. I don't fall into a deep sleep, sometimes I'm not even sure if I fell asleep. But I've found that when I start to feel overwhelmed, the only thing that helps is to lie down and try to relax/let my mind wander, until I feel better/wake up. That takes about an hour for me. People probably need about 7-9 hours of sleep a day in general, but I don't think it has to be all at once. I think maybe I need 6 hours of xyrem sleep and two day time naps. I've always tended to be more productive at night, so if I can go to bed later, sleep less at night, and take more naps during the day, that works for me.

[You might want to experiment with the naps, some people think shorter naps are more effective for them. Naps are generally recommended as part of treatment of narcolepsy, though, I suppose because even if we can force our bodies into a deep sleep at night, we can't force them to stay fully awake all day. Unless stimulants work really well for you, anyway. I've found that though I could stay awake all day on Xyrem, things started going downhill fast sometime in the early afternoon, and I would feel more and more overwhelmed/anxious/scattered/foggy. When I feel that starting to happen now, I'll take a nap. I'm not sure how I can work that into my everyday life yet, but it seems to make all the difference, like my brain gets tired and needs time to process the day in smaller chunks.]

-I've found that doing little things for myself throughout the day and not focusing just on the million things I have to do has helped me feel better and ultimately be more productive. Like, if I want to take a nap or a long bath or color or do something not particularly productive, I let myself do that. And afterwards I feel better and motivated to do something productive, and I enjoy doing that thing more. This isn't really how our society has structured life to be. We're kind of expected to be really productive a lot, and relax a little at the end. I'd like to find ways to get around that. I want to alternate between the two throughout the day. Maybe that's what people with narcolepsy need to do, since we lack the cells that allow other to people keep restfulness and wakefulness as two distinct stages of a day.

-Get some exercise/do things during the day so it will be easier to fall at sleep at night, and for general health, which is important for obvious reasons. Things like walking or yoga might be good for those of us who are getting really stressed out.

-Yeah, try to be generally healthy. It's obvious, but our society tends to forget that if you take proper care of your body you will feel a lot better. I've been reminded of this by seeing what a huge difference getting a bit of deep sleep can make. Other things make a big difference too. Make sure you're getting proper nutrition, drinking lots of water, doing everything in moderation, avoiding smoking/recreational drugs, etc. All those things that are really obvious yet somehow don't seem like a big deal to let slide. Take good care of yourself.

-Don't try to do too much or multitask or expect too much out of yourself just because you are getting better sleep now. You'll actually be able to get stuff done more efficiently if you focus on one thing at a time. I think it will take some time to adjust to this medicine, for our bodies and minds. Be realistic, everything isn't going to get better all at once, it will take some time to figure out the best ways to live with narcolepsy.

-Use these message boards to help sort out your thoughts and as a kind of support group. It seems like people in general have trouble empathizing with the whole narcolepsy thing, and it helps to know you aren't alone/going crazy. And let people know what you're going through, if it comes up. I've had to let my professors know, and they've been very understanding. It might feel like something to hide, but it's not. It would be nice if more people understood that narcolepsy is a real thing.

-Call a xyrem nurse when you have questions. Some of them can be really helpful with tips a doctor might not give you. I think nurses focus more on treating the patient than the illness. So, nurses are probably cooler than doctors for practical advice. And these nurses specialize in xyrem I guess, so yeah. My doctor has been really hard to get in touch with, but I've found that if I ask for the nurse practitioner at his office, she is much more accessible and seems to care more.

-Last and most important in my opinion, do what makes you feel good. You want to be happy. Don't stress out about not being able to do enough or whatever, you can only do what you can do. I mean, this is the way I see it. You get to be alive, and the best thing you can do is make the best of it and be happy. I'd like to try and think of a better way to say it, but that's the most important thing, enjoying your life. I've had glimpses of true happiness and what my life could be with xyrem. If you are losing sight of that, figure out what you need to do to make you feel better. I sure as hell don't have it all figured out and won't ever, but when I think about it, just trying to be happy is the best thing I can do for myself. Maybe that's true for just about anyone, I dunno.

#2 cloudtalk

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Posted 21 September 2012 - 04:10 PM

fyi, I keep adding stuff to this list as I think of it (possibly over-think of it) :unsure: I want to figure out how to have the kind of life I thought wasn't possible for me, on this stuff! It would be great to have that life. And maybe someone will like something on this list or want to add to it.

#3 MsMolly

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Posted 23 September 2012 - 12:40 PM

fyi, I keep adding stuff to this list as I think of it (possibly over-think of it) :unsure: I want to figure out how to have the kind of life I thought wasn't possible for me, on this stuff! It would be great to have that life. And maybe someone will like something on this list or want to add to it.


Thank you for posting this. I'm hoping this & other info. here will help starting on it seem less scary... : )

#4 Megssosleepy

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Posted 24 September 2012 - 12:01 PM

Reducing sodium has been a must for me. This weekend I had a rehearsal dinner and a wedding to go to and we ate very salt heavy foods (so yummy)... well Ive gotta say BAD IDEA... The salt is what was causing my major night sweats! So bad I thought I had wet myself until I realized I was drenched from head to toe! My shakes as well as stomachache was much worse as well!

So if anyone is finding they are having these effects lighten up on the salt!! It really makes a huge difference :excl:

BTW, Cloudtalk I do not think you have over done it... this post is great, and you should add anytime you think of more stuff.

#5 cloudtalk

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Posted 18 October 2012 - 12:00 PM

Here's an update of where I'm at in my xyrem journey or whatever, and my guesses for why certain things have happened. This has been so much harder than I thought it would be, but I still have hope that things will get better, with time.

I've had some bad side effects from the xyrem. I don't think xyrem directly causes these, because it only stays in your system for four hours. I think they may have been caused by the shock to my system of changing the way my body works. For me this led to severe anxiety, as well as the physical symptoms of anxiety even when I don't think I'm particularly anxious. Things like headaches, heart palpitations, digestion issues, and feeling strange in general.

I actually had to stop taking xyrem for a while because the side effects got so bad. I thought I was having a nervous breakdown. I think this might have been partly caused by raising my dose too quickly, it being a shock to my system or something. So I started back at a low dose about a week ago and plan to go up very slowly and cautiously now, so I can keep better track of symptoms and side effects and what causes what. It sucks, because I wanted to be better sooner, and I had to take a medical leave from school because I couldn't handle all of what was going on.

When I went back on the low dose, I was still too tired to do much of anything for half the day. Now that I recognize that my tiredness is real and caused by the narcolepsy I might not be pushing myself as hard, but I'm okay with that, for now, because I am also happier, and I think I will be able to do more if I am patient. But now it seems it'll be at least a few months before I get to a point where I'm a whole lot more functional. I raised the dose only slightly after a week and now I am noticing increased anxiety again. Hopefully I adjust and that goes away, or I figure out some way to deal with it. So, yeah, I don't know. I just hope this stuff really works, eventually, without creating a new host of debilitating side effects. I don't really know anything, but this is the point I'm at in hopefully eventually figuring things out and trying to get well. Why not share it and see if anyone has any insights or thoughts, or if the other people feel the same things help them.

Other things I've noticed -

Since hypocretin is supposed to be important in regulating body temperature, I think the symptoms I've had with sweating and coldness that seem kind of abnormal could have something to do with the lack of hypocretin. I think I'm learning to listen to my body more now, so I'm noticing these things more. I had kind of learned to ignore how I felt after living with undiagnosed narcolepsy for so long. Like, I knew I was always tired, but other people seemed to think that was not a big deal, so I thought maybe it wasn't, too. I realized that I have had cataplexy since I was a teenager, too. I think it seems weird that people wouldn't realize they've been having cataplexy, but they must not, since narcolepsy tends to go undiagnosed for so long. Since I was a teenager I've tried to avoid feeling any strong emotions, because I felt this loss of control when I was angry or laughing. I couldn't talk. When my doctor initially asked me about cataplexy, I didn't recall falling down, but the muscle weakness of mild cataplexy is subtle enough that it seems like it could be normal, not knowing how other people feel when they are angry or laughing. Anyway, I just realized this the other day. Weird.

I think it's important to focus on good nutrition and take vitamins to make sure your body has what it needs during this stressful time. I think the magnesium-calcium supplement might help a bit with the digestion issues and shakiness. I also think I feel better after taking a multivitamin than on days I forget. I don't really know a lot of the science behind it, unfortunately, these are just my guesses.

#6 Megssosleepy

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Posted 19 October 2012 - 02:51 PM

I've had some bad side effects from the xyrem. I don't think they are directly caused by the xyrem because it only stays in your system for four hours. I think they may be caused by the shock to your system of changing the way your body works. I feel like it causes severe anxiety, as well as the physical symptoms of anxiety even when you might not think you are particularly anxious. Things like headaches, heart palpitations, digestion issues, and feeling strange in general.

Since hypocretin is supposed to be important in regulating body temperature, I think the symptoms I've had with sweating and coldness that seem kind of abnormal could have something to do with the lack of hypocretin.

I think it's important to focus on good nutrition and take vitamins to make sure your body has what it needs during this stressful time. I think the magnesium-calcium supplement might help a bit with the digestion issues and shakiness. I also think I feel better after taking a multivitamin than on days I forget. I don't really know a lot of the science behind it, unfortunately, these are just my guesses.


This is an interesting thought, Ive just been kindof dealing with the side effects. Its annoying that one night I get great rest and the next day I feel just awful (anxiety, shakes, ect.) then one night I get terrible rest and I feel more normal. You seem to be experiencing the same annoying things as me. The night sweats are terrible! I wake for my second dose and switch sides of the bed! My shakes are so bad people notice! Walking down stairs is particularly hard! And my digestion!! Its just terrible. (needing prunes one day and pepto the next) I really don't know what to do!

The relief I have received is to much to stop taking it... its not that my EDS is better... but my thinking is... it's like my brain finally gets to rest, I no longer have SP, and my dreams are no longer frightening, also Ive always had terrible depression... that's gone, I used to get very stressed out, be uptight, and over think everything... I just don't anymore... It's hard to explain... It's like my brain had been in overdrive and now it gets to idle awhile so it runs smooth?

I hope you are right... that my body is just stressed and everything else will fall into place. It would be crappy to have to live with these side effects much longer!