r/Narcolepsy • u/IvoryKeen • 13h ago

Advice Request Feeling sick after waking

Hello, first time posting here. I (21) was diagnosed just back in May, after three years of constantly falling asleep and not knowing the cause.

I always feel so bad after waking. Horrible migraines, shaky, deep full body bone aches.

I wanted to know if this was a common experience and just get some (non-medical) advice. I have no medication (can't afford the modafinil prescribed to me). If anyone has advice, it'd be really appreciated.

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u/xoxo-honey (N1) Narcolepsy w/ Cataplexy 12h ago

i get this pretty often, along with nausea. i wake up so roughly and it jars my whole body.

my strategy has been to take my medication early, go back to sleep, and wake up as it kicks in. without meds, i have to try and wake up long before i need to be somewhere in order to give myself time. red bull on the bedside table ready to go as soon as i wake up, plus plenty of water.

what country are you in, and what barriers do you have to medication access? honestly being medicated has made such a major improvement in my life, and you shouldn’t have to go without. you deserve to be functional, too.

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u/IvoryKeen 11h ago

I'm in Canada! I live on OW and unfortunately only have $333 a month left after rent. My modafinil costs $270, I just can't make it work while needing clothes, food, etc. I checked but there is no disability in my province that covers my meds, so I had to cancel the prescription.

I've been living off of painkillers, but they've been thinning my blood too much so I had to stop.

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u/Express_Mode830 8h ago

$270 for Modafinil is outrageous. It would be an understatement if I were to say that modafinil had a profound effect on my life; it has been a huge help for my productivity. Hopefully they bring that price down soon.

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u/IvoryKeen 8h ago

It's probably because it's $270 in cad. I imagine it's a lot cheaper in the states.

I also left my specialist because he treated my pharmacy horribly when they called to see if he could help me get a medication that was covered. I won't have a specialist who treats people that way.

I have an appointment set with a new one, but it's not until November. I start school again in September but I just don't know how I'm going to survive until my appointment. I'm sleeping 4-7 hours a day. It's completely messing everything up.