u/BeKind24_7

I recently got my results on my patient portal, followed by a direct message from my doctor informing me of my narcolepsy diagnosis. Now I know why I’m having problems, but I don’t have the actual follow-up appointment for a couple weeks. I’m tired beyond tired. It’s nearly impossible to wake up initially in the morning. Every time I think I’m awake, I fall right back to sleep. I want to cry when I have to try get out of bed every morning and have to convince myself to not call in for being tired. Emotionally, I feel like a toddler who missed their nap. I suffer all day regardless of sunshine, caffeine, walks, water, snacks, and the other usual “wake up” tactics. I don’t know what to do while I wait for treatment. Any advice? Thank you..

I got my MSLT results back today on my patient portal and I’m flooded with emotions. I’ve had terrible EDS for 2 years. I’ve been to so many appointments and different specialists; until one referred me for a PSG and MSLT. I’m not looking for a diagnosis- I feel that it’s pretty clear. I have been crying on and off since reading the results because this means I’m not a lazy piece of garbage like I thought I was. I work, come home, make dinner, and crash.

My questions are: Do you think this is severe? And, more importantly, now that I finally know what’s going on, what can I do to self manage until my follow-up appointment in 3 weeks? My job is demanding and nap breaks are not possible. My crutch has been caffeine, which either doesn’t work or doesn’t work long. I feel like I’m fighting for my life to stay awake until I inevitably crash. Any advice is much appreciated!

What to do while I wait?

MSLT results - how can I self manage?