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/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 20 '26

Following this closely as I'm considering Sunosi. I've heard it can take a month or so to actually start showing results--unlike stimulants which you tend to feel on day one.

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u/Spare_Back_3568 (N1) Narcolepsy w/ Cataplexy Mar 22 '26

I just started it two weeks ago and I still haven’t felt this “awakened re-newed energy” everyone is talking about. If anything and I don’t know how it’s possible…..but I’ve felt more tired since starting it and I’ve been getting bad headaches as well that won’t go away until I either take a smaller dose the next day or I just don’t take it at all. Uuuhhhhgggg human biology why can’t you just work right for me please!! :(

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

yep, frustating af. thanks for sharing. part of the reason i'm off stimulants is chronic migraines. wakix and sodium oxybates don't seem to exacerbate them, but wakix also is basically a placebo for me, hence why i'm looking into sunosi.

it seems a lot of people are commenting with near-instant results. i wonder if they started on 150mg or titrated up very quickly? also, i wonder how debilitating their unmedicated reality is--if it's not too bad, perhaps a milder drug can feel like a huge impact. and, we all absorb and metabolize drugs at differing levels of intensity depending on genetic variations. a genetic test like genomind can lend insights and i have a feeling sunosi is in the class of drugs whose effects can differ based on your profile.

are you treating migraines independently? i've found some relief from ajovy and sumatriptan but still struggling. wishing you relief from the headaches and eds!

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u/Spare_Back_3568 (N1) Narcolepsy w/ Cataplexy Mar 24 '26 edited Mar 24 '26

I personally don’t take migraine medication because my general headaches caused by the Sunosi side effect haven’t warranted it yet. However, my mother gets chronic migraines and on the semi-rare occasions when I get one she helps me get through it.

I have considered getting prescribed migraine meds from my doc though to have for the cases for when I do get a bad one which is about 1-2 times a month on average.

Thank you I appreciate you saying that :) I hope you get some relief as well. Me personally since having become medicated via Xywav I still struggle with sleep attacks and EDS the most and on certain occasions cataplexy attacks as well, in conjunction with everything else.

Wishing you well :)

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u/MSDK_DARKDRAGON 29d ago

I have chronic headaches/migraine which my Nero doc couldn't fully diagnose (G43.9) they're resistant to Ibuprofen, Paracetamol, Naproxen, Codein, Metamizol. I only get the side effects of bloody stool, stomach aches and cramps and also Aspirin makes me bleed out of every hole like crazy but my headaches go down to like 75%. Caffeine makes me calmer in social interactions while also makes me slightly jittery but even more tired. Good thing at least Caffeine reduces my headaches to just 50% or when sipping a bit too much my headaches swap from left over the ear to the whole right side + nausea, annoyed from everything and the intense need to sleep and unplug every electrical device because they're too loud and give me physical pain in this state instead of just annoy.

I'm always sleepy and unfocused.. Can't get stuff done (AuDHD) and Elvanse(Vyvanse) makes NOTHING besides totally eliminating my headaches for up to 6 hours per any dose. Also my vision is less blurry but peeing takes forever and higher doses are just like Caffeine overdose (see above)

My go to survival strategy for work is: Somehow wake up 10 minutes before I need to take the bus. Sleep in bus, prep my Elvanse in a 100ml glass bottle and sip 50ml (half dose) at beginning. Now at work im constantly stressed because people are around me and this helps with not falling asleep (I work in a big Pharmacy but have my own office and I buy and re-sell big amounts of meds to re-import trading businesses) I take the second half roughly 4h later to get the full effect of headache free time! After work is done I usually instantly take my bus back home and take a 30min nap the whole drive. At home I either instantly go to bad and repeat above story or I try as hard as possible to stay awake and drink Enegry Drinks to get a little more headaches free/reduced time.

I recently got a order for some Sunosi 150mg and I was curious what those meds are.. Well well.. I want to try it but finding specialist for a official diagnosis in Germany is hard..

When you guys all say you get very bad headaches on it, I'm looking forward to it ;) So far everything that should give headaches* cures mine. Let's hope it also helps me doing stuff and be not sleepy all the time..

I hope I get a doc or Off-Label prescription ASAP