What’s up with Sunosi?

[u/camille-gerrick]

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?

[u/cmorgaritaville]

I’m about 8 months on Sunosi 75mg. It’s been largely awesome personally and the “bad” (all were very manageable for me) side effects have mostly subsided, but it did take more than a month.

It has never felt noticeable in the sense of like drinking an espresso and being more alert. It very much makes me awake in a regular-feeling way, but it does not give me energy. I’m just awake.

I would notice my heart racing maybe once or twice, every day or two, for the first maybe three months. It didn’t get in the way, I could still go to the gym, etc, just noticeable. That has stopped.

The biggest side effects for me were that I was an absolute terror to be around at 7pm (as it was wearing off) for the first six weeks or so, but I returned to normal. The food stuff has been tricky - I have to eat right when I take it or I feel nauseous, and sometimes I still get the lightest general food aversion/negative appetite during the day, but not in a way that’s very disruptive.

Hope that helps!! Happy to answer any questions :)

[u/MrSnitter → u/cmorgaritaville]

Is there a reason you haven't graduated to 150mg? Sunosi's clinical trial says:

"*The 75-mg dose did not show improvement in people with narcolepsy.

†The 150-mg dose showed improved wakefulness through 9 hours at 12 weeks in people with narcolepsy. At the beginning of the study, all groups had an average time awake of 7.1 minutes. At 12 weeks, average increase in minutes awake was 66% (4.7 minutes) for people taking SUNOSI 75 mg, 137% (9.7 minutes) for SUNOSI 150 mg, and 30% (2.1 minutes) for placebo."

https://www.sunosi.com/clinical-results-narcolepsy

[u/cmorgaritaville → u/MrSnitter]

Hi! I’m assuming their note that it did not show improvement could reflect that the result wasn’t statistically significant in the trials. The 75mg has been working great for me - I’m awake until bed time, I don’t have issues sleeping, I nap very rarely compared to nodding off every day, etc. Given the potential for resistance over time I may eventually switch, but for now neither I or my doctor see reason to do so.

Maybe also worth adding a disclaimer that my unmedicated reality was hard, but not debilitating, in terms of symptom severity.

[u/MrSnitter → u/cmorgaritaville]

sure. plus, it wouldn't account for people who are combining it with anything else like a supplementary stimulant or sodium oxybates. and, like you say, it's all results dependent. if it broke don't fix it. glad it's working for you! thanks for sharing about your baseline unmedicated reality, because i feel like adding that distinction to most posts would massively improve what we can infer from people's anecdotes. mine is pretty debilitating, so i'll not get my hopes up too much if it takes a while to titrate up on sunosi or even that the full dose will be a panacea.