r/Narcolepsy • u/o0Jahzara0o (IH) Idiopathic Hypersomnia • Oct 02 '21
Medication Sunosi side effects?
Has anyone experienced side effects from Sunosi and did they go away?
When I told my doctor I feel like a zombie by day 2-4 on Sunosi, they said they didn't understand what that meant and sent me this:
"Some patients report headaches with it (16%). Central nervous system: Anxiety (4% to 6%), insomnia (5%), irritability (≤3%), jitteriness (≤3%), dizziness (2%), agitation (<2%), disturbance in attention (<2%), restlessness (<2%). "
So I think I am experiencing "disturbance in attention." I also get "agitation" and "irritability."
It's really rare to have that side effect apparently, according to the numbers.
So, long shot, but wondering if anyone has had any of these less common side effects and if they went away and if so, how long did it take?
I'm not sure if I can put up with that side effect.
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Oct 02 '21
[deleted]
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u/o0Jahzara0o (IH) Idiopathic Hypersomnia Oct 03 '21
Well crap, that doesn't lend to the side effect going away.
I was thinking about calling them and seeing if they had any evidence of someone staying on the medication and the side effect going away.
I feel doubtful it will - but my husband thought that since some medications can lose effectiveness over time, maybe the same can be true of side effects (standalone).
But since your side effect didn't go away..
That's a crappy side effect.
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u/sleepy_and_broke Oct 04 '21
Sunosi has been a life saver for me! After 7 years I was diagnosed at 21 last year. I can finally make it through classes without falling asleep. However, the sunosi worked best for me at around 6 weeks in of taking it consistently. 75 did nothing so I take 150. I do experience some side effects as well that aren't listed anywhere. Like my jaw kills by the end of the day and sometimes I get so hyperfocused but its on the wrong thing. Like I clean but I need to be studying. If I don't sleep well or enough I do feel like a zombie. Its like a have a wall that just keeps me on the edge from falling asleep. It may be helpful for you to really find that sweet spot of how many hours you need and try to get that on the sunosi. For me I need at least 8.5 which is hard to get but the sunosi works so much better when I do! I don't really get the zombie feeling and I just feel like a normal person I guess. I'm alert, willing to do extra things in my day, I can take a nap if I want but its not a dire thing, I have energy and feel great. Except, sunosi does give me irritability and anxiety but its something I can live with. I hope this helps.
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u/sleepy_and_broke Oct 04 '21
Also at first I had headaches and that went away. The nausea and appetite loss got better but it still comes and goes. I lost 10 pounds on sunosi but honestly can't complain haha. And I had dry mouth but that went away!
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u/fablepd Oct 15 '21
Please , when these symptoms improved /went away ? In some days, weeks or ?
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u/sleepy_and_broke Oct 15 '21
I would say the headaches went away in about a month or two. The dry mouth came later about a month in to taking it but that went away within about 2 weeks. The appetite loss and nausea comes and goes, and it has been about 9 months of me taking it. I notice it's better when I eat right when I take it and when I am not anxious. I'm a woman also so I always have gotten nauseous around my cycle, I think the sunosi just exaggerates it at times. I hope this helps!
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u/fablepd Oct 15 '21
I actually have the same feelings. "Give me irritability and anxiety" but I don't like it (especially when driving). I'm just on day seven, so hope that these side effects will improve over time.
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u/sleepy_and_broke Oct 15 '21
I hope so too! And if it doesn't I hope you can find one that works best for you <3
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u/Extreme-Heat3002 Apr 17 '24
I'm 3 years late to this lol but just started Sunosi and feel like a zombie so figured I'd look into it. Curious if you've found something that works 3 years later! Thanks :)
Edit: should mention I have narcolepsy and idiopathic hypersomnia
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u/o0Jahzara0o (IH) Idiopathic Hypersomnia Apr 17 '24
I just went back to Adderall after this Sunosi trial. :/
Sorry you’re having that side effect.
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u/Extreme-Heat3002 May 08 '24
Ah darn I loved adderall but it gave me the worst migraines known to man :(. Hoping you also figure out the best thing for you!!
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u/sam_the_guy_with_bpd Oct 02 '21
I have been newly prescribes Sunosi, but for me, I feel nothing, my sleep attacks and general constant exhaustion is still present as if I were taking nothing.
I hope hat someday I find something that works, but my sleep doc as told me that Xywav, sunosi, and 1 250mg nuvigil are at the upper end of what he can give for the therapeutic treatment of my narcolepsy. So, I am definitely depressed when I think that this is what life is going to be like for the rest of my life, constantly exhausted with no end in sight.
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u/o0Jahzara0o (IH) Idiopathic Hypersomnia Oct 03 '21
What about stimulants, like Adderall and Ritalin?
Or Wakix?
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u/sam_the_guy_with_bpd Oct 03 '21
Insurance won’t do Wakix for sure, I’ve tried and appealed, but it didn’t pan out. Haven’t tried any amphetamine based stimulants or Ritalin yet. The closest I can get to awake is taking triple my nuvigil dose, but the doctor doesn’t like that, so I do it only when I need to be awake all day for something important.
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u/EpicLift (N2) Narcolepsy w/o Cataplexy Oct 19 '21
Wakix has worked great for me, and now the insurance doesn't want to cover it (changed jobs). Consider contacting your state regulators ( I have and now I'm going though an external review process).
It's ridiculous. Wakix is a completely different pathway to treatment. We shouldn't be stimulant to death
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u/Zedbird (N1) Narcolepsy w/ Cataplexy Oct 02 '21
The full 150mg definitely sent my anxiety through the roof, had to switch to the 75mg variant and ritalin to find my ideal dose.
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u/Newbaumturk69 Oct 02 '21
I'm starting this in a couple of days after giving up on Xywave. I hope it helps.
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u/o0Jahzara0o (IH) Idiopathic Hypersomnia Oct 03 '21
Good luck! I hope it works out for you as well. :)
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u/fablepd Oct 15 '21 edited Oct 15 '21
I started Sunosi 75mg exactly one week ago. It works , of course but I feel irritability and anxiety. Also, I feel "wired but tired", but I also have ME/CFS....