Posts tagged Going

Question : Just diagnosed with narcolepsy and I’m going on Xyrem?
I was diagnosed recently with narcolepsy (I don’t have cataplexy, just severe EDS but they did all the tests so this is what they came up with), and my doctor said that the first thing we’re going to try as a treatment option is Xyrem. I’m all for trying anything to help me deal with this condition, but I’m very nervous about it because it just seems like it’s such a tightly controlled drug with so many warnings and whatnot, and it makes me a little uneasy. I trust my doctor and I’ve read enough about it to know it’s what I need, but I’m just wondering what kind of experience, positive or negative, you’ve had with this drug? If you have narcolepsy, what treatments in general have worked well for you? Any and all help would be appreciated! Thank you!
ed treatment options

Best answer:

Answer by sleepycatz1972
i’m surprised they’re starting you off with this drug. it’s generally seen as more beneficial to those narcos who experience cataplexies. has he looked at modafinal (provigil)? that’s the main one used for EDS, and is usually very successful.

i took xyrem for a brief period a few years ago – it didn’t do much for my EDS, but it did help limit the number of cataplexies i had each day. i only took it temporarily because, frankly, i felt drugged out when i took it. if it was going to make me feel that way, and still not help the constant EDS, i wanted off it. got switched to modafinal after & did very well on that.

mostly, my most effective treatments have been modafinal, maintaining a strict sleep schedule & eating/exercising right.
• modafinal helps take care of the sleep that always lurks at the back of your mind.
• strict sleep schedule…set one & follow it. that means go to bed at same time every night, get up same time every day, schedule short (20 mins or less even if you don’t think you’re tired) sleep naps a couple times a day to recharge your batteries. long naps won’t do your body very wel, you’ll just feel more dragged out after. short ones are like a jolt to the system, so set an alarm.
• diets high in protein & low in carbs help boost your energy level. regular exercise helps your body release the correct chemicals it needs to regulate things, so try to squeeze in some physical activity into your daily routine even if it’s just jumprope for 15 mins when you wake up.

nothing, and i do mean nothing, will fix this & take away all your symptoms every day, so try not to expect miracles from a drug. every case of narco is different, so what works for me might not be your thing…but the suggestions above are usually the first course of action to try when attempting to get some o the symptoms under control.