[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.
