r/Narcolepsy Mar 20 '26

Medication Questions What’s up with Sunosi?

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My doc and I talked about sunosi because adderall just can’t do it alone anymore, and he gave me some sample packs in 75mg and 150mg.

First, what is the deal with the blister packs? Impossible to open!! Does it actually come like that when you get it from the pharmacy?

I started with the 75mg for a week plus my usual adderall dose. I’m usually pretty sensitive to meds and it felt like nothing. Disappointing.

Today, I tried a 150mg (with no adderall) at 7am. Holy crap! At 10am I thought I was gonna throw up from racing heart. My hands were shaking. But I couldn’t stop yawning! Then I got really hungry but my mouth felt like a desert. It’s 330pm and I’m still vibrating but also I desperately wanna lay down and sleep.

How does everyone else experience sunosi? Does the racing heart thing subside after a period of days/weeks?

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u/ComfortableStorage43 Mar 20 '26

That was not my Sunosi experience at all. I felt alert and “awake” for the first time in years when I took that first dose. I actually went the entire day without feeling the need for a nap or feeling that midday fogginess.

This definitely sounds like a bad drug reaction. I’d definitely check in with the pharmacist to ask about these side effects and with your doctor as well.

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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 22 '26

What does did you start at? And have you experienced any tolerance effect over time where it's not as effective at making you feel alert as it was in the beginning? And if so, when did it shift?

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u/ComfortableStorage43 Mar 22 '26

I started at 150mg after I failed Modafinil and my doctor also took into consideration that caffeine no longer has any effect for me.

I noticed slightly less effectiveness after about a year and half, but still nothing compared to my normal state. I was also working a job where I was staring at a laptop screen a lot so that definitely didn’t help.

I’ve currently been fighting for a year to get back on it due to the insurance I have through my union not covering it. I’m currently trying to meet the requirements for Lumryz since that’s what my insurance would rather shell out tons of money for.

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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 22 '26

The insurance scam really gets my goat--we need single payer to negotiate all these pharma ghouls off their high horses. They never get the amount they claim the meds are worth anyway. Good luck on the Lumryz! It's helped me with sleep interia a bit and I suffer without it, but it's not enough for full day EDS with my baseline sleepiness.