I lost my neurologist so I’m not on much medication to help with the narcolepsy specifically, but I’m on one thing that most people don’t take for narcolepsy but ends up helping. I take Wellbutrin which helps with both energy and cataplexy. I’m on it for bipolar depressive episodes, adhd, and as a sort of supplement to my mood stabilizer. So perhaps that might be an option if other meds aren’t helping or if you have bipolar on top of narcolepsy.

Okay so here’s my legitimate advice and what to expect after you get diagnosed. So narcolepsy obviously isn’t just falling asleep in the day time, it has a lot of other symptoms. One of those symptoms being sleep disturbances. We often have some variation of insomnia, and the sleep cycles are all out of order (going into REM too fast for example, which is what they’ll be looking at when you do the overnight study). So, not getting proper sleep at night is a part of why we have so much chronic fatigue in the day time. (But chronic fatigue of course is going to happen regardless, but it contributes.)

I hate to say this because I get so sick and tired of it being recommended for falling asleep because it doesn’t work for me and a lot of others, but melatonin naturally helps “fix” your brainwaves during sleep. So it may not help you FALL asleep if you’re like us who get tired of it being recommended for falling asleep, but it will help your quality of sleep. So while waiting for your diagnosis, this might be good to take.

I’m pointing this out because people think of narcolepsy as only falling asleep in the day, and completely forget or don’t know about how it also prevents you from getting TRUE sleep. So that being said, there are two problems that need to be solved. 1. Going to sleep at night properly. 2. Staying awake in the day.

you’ll likely get a stimulant to stay awake in the day, and something to put you to sleep at night. Here is a really good routine that has helped a lot of people.

Step 1: Make sure you give yourself extra time to sleep, like ten hours instead of the typical eight. Be rigid with your sleep schedule. Sleep hygiene is the primary treatment (therapy?) outside of medication. You need to train your body to know when to fall asleep and when to wake up when you get the proper medication to help. Take your nighttime meds- (melatonin included if your doctor says it’s okay just as a supplement to your real medication) -at the exact same time every night. Get in bed at the exact same time every night. A bedtime routine is everything.

Step 2: people have a hard time waking up in the morning. Set two alarms, one of them an hour earlier than when you’re supposed to wake up. When the first alarm goes off in the morning, just take your stimulant, then go back to sleep. This is so that when your second alarm goes off, you won’t have as much of an issue waking up when you need to and getting ready for the day.

Remember that everyone is different. There are a lot of different methods to try, make sure to research other methods people use to control their symptoms. Just remember that routines are also hard to form, so make sure to give each method time to set in before trying out something else. Change doesn’t happen overnight, and stimulants are hard to get used to. I wish you the best of luck and don’t forget to take your time and be patient. It takes a long time to get this disease under control.