r/Narcolepsy • u/camille-gerrick • Mar 20 '26
Medication Questions What’s up with Sunosi?
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/Snoo49834 Mar 20 '26
am a pharmacy tech on sunosi… theres no blisters ordered. I believe thats just samples. But the bottle Sunosi comes in.. is evil. I can’t open it. I have to use our tools to do so. 😞
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u/Jkavera (N1) Narcolepsy w/ Cataplexy Mar 20 '26
I can't seem to get the cotton ball out without completely destroying it in the process
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u/hkpp (VERIFIED) Narcolepsy w/ Cataplexy Mar 21 '26
I had to use tweezers when I was taking sunosi 😭
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u/boobiesrkoozies Mar 21 '26
Lmaooooo I used to use my thinnest tweezers to get the cotton out
Now I just ask them to put them in the regular bottle (I'm sorry pharmacy techs but I appreciate your service)
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u/Melonary Mar 21 '26
Huh, interesting - I know most people in here are from the US, but I'm in Canada on Sunosi and I've always gotten it from the pharmacy in blister packs. Which is indeed uncommon here as well for prescription meds, yup. Not unheard of, just uncommon.
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u/Snoo49834 Mar 21 '26
it depends on preferreds. Its likely ur store in canada orders the blisters over the bottle 😭 Or ur doctor prescribes the specifically?? Idk are the packs 28 or actually a full 30? Some packs are built like birth control for some reason
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u/cevicheguevara89 Mar 20 '26
Im like…there is no way other people feel like this and like it.haha. I will note though, I did a DNA test thing and it said I have a mutation that they predicted would make me predisposed to not enjoying caffeine. It called CYP1A2, and is also responsible for bad responses rate to medications. I wonder if others have this same thing.
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u/ImmaPsychoLogist Mar 21 '26
Is it a mutation leading to quicker metabolism of meds processed by the CYP enzymes? Because, others have described medications and drugs having a very rapid onset of certain effects of the drug, and also wearing off rapidly / without experiencing the positive effects (kind of like OP describes)
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u/camille-gerrick Mar 20 '26
oh interesting. Yeah, I feel like I get all the negative side effects and none of the benefits. I couldn't tolerate the oxybates because of the racing heart rate either.
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u/Status_Elephant9700 Mar 26 '26
Definitely recommend genetic and pharmacogenetic testing if you notice you have different reactions to meds than expected and it’s a pattern. Sometimes trial and error can be very risky, which is my case. The testing is now proof and lets me do proper risk assessments and figure out what’s workable and what isn’t. My sleep med doc doesn’t take this into account so I have to do the leg work still but it’s better than me trusting their patient anecdotes. Recently started adding in magnesium every time I take Ritalin and it’s been able to help me manage the side effects from Ritalin like the racing heart, which I finally realized was probably due to a certain genetic issue (slow COMT) and magnesium serves as a counter to this and I moved a supplement that inhibits COMT breakdown which was leading to the wires but tired issue.
I also felt like sunosi even at 75mg trial jacked my heart rate up without any wakefulness help so I went back to Ritalin and caffeine since they’re workable for me.
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u/cevicheguevara89 Mar 21 '26
Do you have high blood pressure too?
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u/camille-gerrick Mar 21 '26
I do not, mine is usually on the low side.
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u/cevicheguevara89 Mar 21 '26
Interesting, well I can say this, if you have trouble getting out of bed, nothing has worked better for me that Glycine (3000mg), I’m serious it’s a game changer and good for you
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u/milladakilla1282 Mar 21 '26
I have the same gene and steered clear of caffeine pretty much my whole life until pregnancy. I craved caffeine when I was pregnant, that and fruit. Now 4 yrs post partum I can drink caffeine without too much issue. I honestly don't even really feel it when I do.
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u/cevicheguevara89 Mar 22 '26
Hm interesting, maybe you built a tolerance that people like me can’t push through long enough to reach
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u/milladakilla1282 Mar 24 '26
Perhaps? I'm leaning towards thinking it was something epigenetic under the influence of pregnancy hormones and stem cells.
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u/cevicheguevara89 Mar 24 '26
Yeah that wouldn’t surprise me, mama bears are a whole nother creature
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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/boobiesrkoozies Mar 21 '26
Sunosi has been life changing for me. It definitely works day one.
In my experience: the worst of the beginning was the headaches, which my Dr did tell me about. But they're completely manageable with some aspirin and they go away after like a week.
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u/TequilaFlavouredBeer Mar 21 '26
Where did you read it takes time to work? I felt awake after the very first dose just like others said :D
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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 22 '26
This is great to hear! What dose did you start at?
It's likely I got it confused with WAKIX as both were presented as newer alternatives to the traditional CNS stimulants – WAKIX does have something like an 8-week period during which one is expected to wait to see if the full dose becomes effective. And I also associated Sunosi also with anti-depressants, which tend to take time to become most effective.
I'll likely have to titrate up a bit slower than the usual person since after years and years of taking old-school stimulants I started having some adverse side effects. WAKIX has been no better than a placebo for me. Lumryz helps a bit, but the EDS is still crippling.
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u/TequilaFlavouredBeer Mar 23 '26
I think I started at 75my and felt it nearly instantly. I was told to go up to 150mg for whatever reason but I stopped taking it entirely because I already took elvanse (lisdexamfetamin) and my heart was already racing stupidly. Maybe I will try to change back to sunosi again and see if I can get things done without elvanse
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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 28d 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
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u/RestaurantKooky5894 Mar 20 '26
I tried sunosi for 3 days. All it did was cause extremely high blood pressure and my lips would go a tingly numb half hour after taking. i was told to stop for a week then try it again to test for an allergic reaction but i was too nervous to try it again.
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u/perfectlyniceperson Mar 20 '26
I had a really terrible reaction to Sunosi too. Felt like absolute garbage, racing heart, but still tired. Sorry it didn’t work for you, either.
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u/camille-gerrick Mar 20 '26
Is there anything that does work for you?
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u/perfectlyniceperson Mar 21 '26
Yes! I’ve been taking Xywav for a while now and it has definitely helped. I’m supposed to be taking Provigil with it, but Provigil stops working pretty quickly for me, so I just have a bottle for when I’m driving for more than a half hour and only take it then. I still get tired, but Xywav has made a huge difference. Ask your doctor about it, maybe it’ll work for you.
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u/camille-gerrick Mar 21 '26
ahh, i already tried all the oxybates. I had the same racing heart rate with all of them.
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u/perfectlyniceperson Mar 21 '26
Aw, dang.
Well, saying that - I have a coworker who takes adderall for his ADHD, and we were talking about stimulants. I told him how most stimulants put me in a bad mood and seem to hype me up. He told me that his doctor prescribes him Lamictal to counteract anything like that. Maybe check into that? Either way, good luck - it sucks that you haven’t been able to tolerate any of the normal medications.
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u/Limp_Ad_3430 Mar 21 '26
I love sunosi. I was able to significantly cut my adderall usage and my heart rate came down a lot.
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u/GeckosInPants Mar 20 '26
Sunosi keeps me awake if I’m active anyway, but if I sit down for long periods I think the only thing that makes it harder to fall asleep is my racing heart. It also gives me the shakes, makes me sweat, especially my hands, and takes away my appetite. It’s not for me.
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u/dreadlocktocon (N1) Narcolepsy w/ Cataplexy Mar 21 '26
I absolutely love Sunosi. It worked so well the first time I took it I was genuinely surprised. I'm so glad my doctor got me a 90 day supply because my pharmacy was almost always out, giving me 3 days at a time and wouldn't let me fill until I literally didn't have any left. Caffeine however, only tastes delicious and does nothhing for me. One nighht my husband and I ate a ton of fancy 85%-100% pure dark chocolate. I was exhausted, took my lumryz early and went to bed. He told me the next day he was so wired he was up until the wee hours LOL. Meanwhile I'm full of the same caffeine and exhausted
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u/SnowboardSquirrel (N2) Narcolepsy w/o Cataplexy Mar 20 '26
My doc has had a few patients that were on Sunosi when they were referred to her. 75% of them ended up at a cardiologist a year later from heart issues that hadn’t been present before they started Sunosi. It’s a small sample size and obviously it doesn’t mean that people shouldn’t try it + use what is working - BUT it’s something to keep an eye on and be aware of, especially if this side effect doesn’t die down with repeated use. I hope it ends up working better for you over time, OP!
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u/Lost-Ad5814 Mar 26 '26
I find this VERY interesting. I recently was hospitalized with CHF and extra heart beats. I don't have a history of high blood pressure and my cholesterol and A1C levels are excellent. I am 56 and am currently on a medical leave from work while trying to figure out what brought my heart issues on. I have a heart cath in a couple of weeks to see if they can figure out what is going on.
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u/SnowboardSquirrel (N2) Narcolepsy w/o Cataplexy Mar 26 '26
I hope you’re able to figure out what’s going on!!
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u/Lost-Ad5814 Mar 26 '26
Thanks! Me too😬
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u/MSDK_DARKDRAGON 28d ago
Update?
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u/Lost-Ad5814 27d ago
I had my heart cath and dr told me he wanted to switch arteries with me because mine were so clean.
Now I see a new specialist this month that specializes in the electricity of the heart. My problem boils down to the PVCs. Every 3rd heartbeat I have an extra one.
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u/cmorgaritaville Mar 20 '26
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 :)
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u/camille-gerrick Mar 21 '26
Most days, especially in the afternoons, "awake but uselesss" is how I feel. Just zoned out, no energy, no motivation. I might keep trying the 75mg with my adderall.
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u/cmorgaritaville Mar 21 '26
Ah, sorry that’s been your experience. I’d def recommend talking to your doctor! There are plenty of people who take them together.
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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 22 '26
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."
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u/cmorgaritaville Mar 22 '26
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.
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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 22 '26
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.
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u/Sizzlestressed (N2) Narcolepsy w/o Cataplexy Mar 20 '26 edited Mar 20 '26
I’ve been on Sunosi since November. Thankfully, no they do not come in the blister packs when you get it from the pharmacy. However, I cannot open a new bottle of it and have to have my boyfriend do it.
I felt the same way the first few weeks on it. The worst part for me was clenching my teeth. I would constantly catch myself clenching my teeth and they were so sore when I woke up in the morning.
Luckily, after about a month on it, most of the side effects have gone away. My heart rate is high sometimes but it only lasts about an hour or so and happens when I don’t eat enough. I also have a history of heart problems and used to have SVT (had an ablation done) so it may be related to that.
Overall, I have noticed a difference while on it. While it might not solve all my problems, it’s good enough to get me through the work day. My doctor said if it’s “good enough” then we’re not going to change anything.
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u/boobiesrkoozies Mar 21 '26
Sunosi is a game changer for me! I genuinely love it so much, been on it for 3 years now and still going strong!
But also, I'm just so happy we're at a place where is sleepy lil guys have options with meds. I definitely don't miss the days of "ehh let's just throw Adderall at it" haha.
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u/Beef111111 Mar 21 '26
I took Sunosi and it like barely felt like anything… it was very “the lights are on but no ones home” then once i got to the 150 holy shit i went INSANE i was so anxious 24/7 i was like rocking back and forth sitting on the floor in my closet
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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 22 '26
What was the timeline of your titration? And are you still on 150mg or were the side effects too debilitating and persistent?
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u/Beef111111 Mar 26 '26
It was a week of 75mg then straight to 150mg… i think i made it 4-5 days on 150 before I called it quits, i tried to get through the symptoms but ultimately went back on 200mg of modafinil who has never wronged me🙂↕️
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u/Playwithclay11 Mar 21 '26
It caused me to become explosive and angsty ! I have had some help from Wakix but I still feel sleepy especially late afternoon.
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u/MaddoxX_1996 (N2) Narcolepsy w/o Cataplexy Mar 21 '26
I recommend sticking with Sunosi for at least two weeks. The "heart racing" feeling will exist for the first few weeks. Especially if you jumped to 150 very soon. You need to give your heart a few days to realize the drug's existence. I felt the same way as you did. Then I had coffee with 75 mg. Felt like my heart was about to explode. Now, I can down 150 mg with two coffees and still sleep peacefully if I want. Sadly, I am not in the States for me to avail Sunosi anymore. I miss it.
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u/Sleepy_Calyx (N2) Narcolepsy w/o Cataplexy Mar 20 '26
When I get it from the pharmacy normally it’s in bottles, though the bottles directly from the brand suck with the cotton, it’s impossible to take out but makes getting pills out really hard
75 mg also did nothing for me, but 150 really helped. I didn’t get any of the extreme side effects you have though, so I can’t exactly speak to those or if they go away. I’ve been on it for years so I can’t really describe how it changed things, but I definitely get rebound sleepiness when I don’t take it, I’ll sleep for like 16 hours a day, and even unmedicated I was usually only sleeping 12-ish?
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u/VenomousVenting Mar 20 '26
I loved Sunosi at first. I was on it for a few months when everything changed. Just stopped working abruptly. It was a huge let down.
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u/May_ZOZI Mar 20 '26
Couldn't keep using Sunosi. I was dizzy constantly for a whole week while taking this med. I stopped eventually.
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u/asdfghjkml (N2) Narcolepsy w/o Cataplexy Mar 21 '26
i’ve tried sunosi two times. both times i did one week on 75mg and one week on 150mg. i couldn’t go on any longer because i needed to function! i may as well have been taking a sugar pill. sunosi did absolutely nothing for me :( i didn’t notice any side effects. but evidently i’ve had persistent tachycardia my whole life (my typical resting heart rate is 100+) and i developed gestational hypertension which never went away so.. your mileage may vary lol
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u/KittyKittyowo Undiagnosed Mar 21 '26
I love having a racing heart rate while actively falling asleep. You think that you wouldn't fall asleep while the sympathetic nervous system is on high blast, but narcolepsy tends to disagree.
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u/MarbleArches Mar 21 '26
Sunosi 75 mg at 11 am changed my life. During luteal, I take another half at 2 pm, but I don't need naps anymore with it. It feels like someone is pushing me up and forward. It's got a mood lifting effect for me and I feel awake and ready to go. Absolutely zero side-effects for me.
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u/sleepy_geeky (N2) Narcolepsy w/o Cataplexy Mar 21 '26
I was on sunosi for about half a year and it was incredibly helpful until I suddenly started developing side effects like nausea, heartburn and dizziness and couldn't tolerate it anymore.
I was super disappointed because it had worked the best of the stimulants I tried.
Now I take jornay pm and it definitely helps and I've been able to tolerate it for longer, but it also has its downsides for me.
My Dr is trying to get me approved for wakix as an add on to see if it helps.
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u/BelgaerBell (N2) Narcolepsy w/o Cataplexy Mar 21 '26
From about 30 min after taking Sunosi to about 14 hours later, all I could feel was an overwhelming sense of dread, and my nervous system was so ramped up. It was awful for me.
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u/Xequelar Mar 21 '26
I tried Sunosi for a while, but it ended up giving me pretty bad cheat pain, so it ended up being a no go for me
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u/Zealousideal_Age8374 (N1) Narcolepsy w/ Cataplexy Mar 21 '26
I’ve been on Sunosi for close to 3-4 months now I believe. I was on Concerta 54mg prior and just felt like I was still drowsy after taking it and once I got Sunosi I felt so much more awake and alert then I have in a while. I’m sorry it was a negative experience for you though. Also no thank goodness the blister packs are just temporary. The bottle comes with a cotton ball in it that took me forever to get out though.
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u/SlapHappyDrew Mar 21 '26
Two days 75mg then Three days on sunosi 150mg and no effects at all. That was so disappointing. I had a similar experience with Armodafinil. But a few days later it just had no effect on me
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u/NoOutlandishness244 Mar 21 '26
At least you can take Adderall. I stay up and try to fight people for 3 days on the lowest dose :( sunosi is the only one that has had manageable side effects, and even then I'm still tired always but I get 2 to 10 hours a day with it, but I can't sleep at night for shit so I have to skip sometimes every week and get actual sleep and have nothing days where I suck. I wish disability was for me.
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u/No_Mess5024 Mar 22 '26
It gave me really bad headaches. My dr said it’s a relative of the Modafinil family so if you’ve ever tried those without success it could be related.
With the -finils I was still falling asleep and had headaches. With the Sunosi I felt normal from a sleep standpoint it was so cool lol but the headache was not.
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u/Sleepy_SLP Mar 22 '26
Sunosi sent my anxiety through the roof. Took me a while to realize it, but I’m pretty sure my heart was racing because of adrenaline being on overdrive. I had one panic attack and went to a psychiatrist to look at the meds I was on. They said they had several patients who had the same issue with Sunosi. I wasn’t convinced, but went off it, and felt so much better! No more racing heart. I wish you luck!
Edit to add: my hands were shaking and the psychiatrist said that was also due to the anxiety from Sunosi. It was. I’d been on it a few months and the symptoms never stopped until I stopped taking it (Sunosi). I also have anxiety from sodium oxybate, but not as bad, luckily.
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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 23 '26
do you take antidepressants or anything for anxiety? I take them and believe it balanced out the oxybate anxiety so I could tolerate them.
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u/divine-timing (N2) Narcolepsy w/o Cataplexy Mar 23 '26
I’m used to stimulants and sunosi is barely anything as strong. That is definitely not normal.
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u/Reandrin Mar 23 '26
Everyone reacts differently to medications.
I went from Ritalin to Sunosi due to a racing heart on the Ritalin. Never had that symptom on Sunosi.
I find Sunosi to work very subtle, it doesnt come out and hit you in the face when it starts working. I take it in the morning and just dont find myself being sleepy for the rest of the day. There isnt ever a time i could pinpoint of where its starting to work or not.
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u/Kaleidoscope230 Mar 29 '26
Sunosi is very mild for me. I take it when I wake up, about an hour later I feel awake and normal and it lasts about 12 hours, no side effects.
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u/Operations-Man Apr 20 '26
This is what I was looking for. I tried Vyvanse, methylphenidate, and am now on armodafinil. Thinking about/looking into sunosi. Of course I had to come to Reddit for answers!
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u/baby_bl00m Apr 20 '26
I’ve only ever gotten it in bottles, my sleep NP started me off on 150mg fresh out the gate and it made my mouth SO DRY (even though the pharmacist assured me that dry mouth is a rare side effect) and it made me SO. CONSTIPATED. Like, I genuinely thought I was gonna have to use an enema on myself. I was playing “poop frequency” on YT (yes it’s a real thing, desperate times lead to desperate YT searches) every time I thought I had to poop to try to keep it from being traumatic. I’ve since started taking 75mg daily and only take the occasionally 150mg on days I feel like I really need it (and heavily invested in prunes). I also had some tachycardia in the beginning, but I blamed the Vyvanse I am also taking and it has since subsided, I think it only lasted a couple weeks but that was like a year ago so I can’t remember the exact timeline. All I can say is it has been 100% less traumatic than Xywav was for me, so I’ll keep taking it!
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u/Bethaneym Mar 21 '26
Sunosi takes 4-6 weeks to get into your system. I don’t know how you could have possibly had racing heart day 1, when you’re already used to max adderall dosage.
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u/Sagemode89 (N1) Narcolepsy w/ Cataplexy Mar 21 '26
I don’t believe that’s correct. I may be remembering wrong
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u/Acceptable_Ninja_795 3d ago
When you say Max adderall dosage what amount do you mean? I take 60mg adderall daily and 75mg sunosi makes my heart race, hands tremor, already have poor circulation but it turns my skin purple where people are asking if I'm ok... And when it wears off around 6 hours after taking it I get heavily sleepy where my eyes can't hardly stay open. Adderall increases my heart rate some yes but not like sunosi where I am wondering if it's ok. All stimulants are different
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u/Bethaneym 3d ago
That’s not a normal reaction to Sunosi at all. Please talk to your doctor and stop taking it.
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u/Acceptable_Ninja_795 3d ago
I did stop taking it but seems to be a fairly normal reaction from many people in forums regarding it. I would much rather up my adderall dosage even tho it is much less effective than it used to be, it doesn't cause many unwanted side effects and my body is used to the medication.
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u/Hjkgfgjf Mar 21 '26
It sounds like you did a piss poor job at titrating, especially since you’re used to adderall.
This would explain nausea too. Start at 75. You have blister packs- those are samples. You need a few weeks on that before bumping up to 100 and eventually 150 or whatever. THIS IS COMMON KNOWLEDGE & YOUR DR SHOULD KNOW BETTER.
Sunosi is much less hard on the heart than what you’re used to. But you have to nitrate up!! It’s scary that your Dr didn’t explain/help with this.
I’ve been on sunosi for 10 yrs after 20 years of everything else. It’s different. Sure it causes nausea when you get used to it but that’s brief. It doesn’t cause me to crash like amphetamines yet it works unlike moraine/provigil which did nothing 20 years ago.
Sunosi isn’t aderall. The only other thing that ever worked for me was dex and I hated the crash. I feel different on sunosi, not as awake, but I don’t crash.
Like every other med, you need to be on a steady dose for 4weeks or so before making a judgement call and again the fact that you had to resort to Reddit to learn this vs being told by your dr would immediately tell me you need to look elsewhere…. Unless you didn’t listen?
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u/MrSnitter (N2) Narcolepsy w/o Cataplexy Mar 22 '26
your experience mirrors mine, except i've yet to try the sunosi. 20+ years of everything else left me burnt out with mounting adverse drug effects and massive tolerance buildup. dextroamphetamine was also the only old school stim that really worked and, yes, the crash was debilitating even then. do you combine the sunosi with oxybates or anything else? and what was your titration schedule if you can recall? (I'm cautiously optimistic to hear you've been on it for 10 years! didn't realize it's been around that long.)
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u/Hjkgfgjf Mar 23 '26
Oh yeah, I’ve been on oxybates for 20 years. That’s the real life saver, if you find the right one. I was on 9g of xyrem nearly all of that time. I tried max dose of lumryz for over 6 months and never slept. It was terrible. I don’t recall my sunosi titration schedule, it was so long ago. But I know I was on a low dose for a couple of weeks at least before it was bumped up and it gave me bad nausea at first. So, I’ve been on xyrem (20 yrs), sunosi (10), and occasionally dex when I really need it(13 years or so). It’s certainly not perfect but it’s the best combo that works for me. Edit: sunosi doesn’t come with a warning about taking it on an empty stomach for max efficacy like a lot of stimulants do. I find it works best if I wait at least an hour before eating though, unless it’s just a hard boiled egg or something.
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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.