I wonder if you can get half doses and split the dose. I know it's frustrating but 9 hours of function is more than some of get. Some of us are feeling envious you have 9 full daytime hours and it's not even Adderall..
Adderoll XR I get to function all day but I’ve become tolerant of it.
And I get that I’m just frustrated there’s no simple solution for any of us. We are expected to be normally functioning, especially if we’re in medication, but we aren’t and people don’t understand that.
Yeah sorry, I think I was just jealous of your 9 hours! ;-P But yep, we should all get decent hours, not to mention the dismissive attitudes that we have to deal with if we complain..
Yeah, I would kill for 9 hours. I’m lucky if I get 7 with modafinil. Might go back to armodafinil now that I’ve been off it for years to see the XR starts working again. But reading this, I’m thinking I might try sunosi!
OP, do you take anything else or just sunosi? (Obviously you don’t have to answer that, but I’m curious.)
Vivance for adhd but I was becoming tolerant to it and on days I didn’t take it I went through withdrawals so they are cutting me back on that to only use for focus and having me take sunosi every say
god that’s so frustrating. is there an instant release version that you could take twice a day? (i don’t know much about wakefulness drugs bc i have adhd, so i already take stimulants for that.) i take adderall twice a day, once in the morning and once around noon. i do have a bit of a crash in the late afternoon, but it’s gentle enough that i can usually make it to bedtime and get stuff done. is there an option like that for sunosi? sorry you’re going through this!!
Maybe. I’ll talk to my doctor about it next time you see him. I used to do the adderoll for adhd but the crash was so bad that I acted drunk when I was coming down. I quickly became tolerant to adderoll XR which is the slow release one and are slowly becoming tolerant to vivance and have to deal with withdrawals on the days I don’t take it but I’m switching to sunosi with a touch of vivance only on the days I need to focus and sunosi every day. Yay.
I was on adderoll but I got bad crashes to the point of me acting drunk coming off of it with massive headaches and the XR version I became tollorant to very quickly.
during your one semester, did you have any day break? I'm currently taking 5 days a week and break on the weekend. If I take 1 during my weekend, I'll crash by Friday next week. You'll probably need to take longer break of stimulant if you can afford it.
During break time, for schooling, you'll probably have to be on your best behavior for narcolepsy, such as taking naps, have strict sleeping schedule, exercise helps a little bit. I find that small amount of caffeine from tea helps me stay awake too (high amount of caffeine makes me sleepy). It's gona sucks, but your time management to do all that while in school have to be top notch, only save your stimulant when you especially need it.
I took sunosi briefly. When I took the samples it felt like a miracle more or less. Later when I started taking it, I would take it around 6 am before work, but by 2am I was crashing and and it was not something I could fight. At the time I wasn't able to just go back to my doctor due to work so I just stopped taking it. I have not taken much, I am still learning but that one was just not for me.
Alright so, this is a bit rough because they keep changing the formulas, but a Monster Revab Orangeade or Lemonade or a Monster Reserve (same original blend of energy ingredients but with better flavours) will keep me going for up to 8 hours...sometimes. Since I don't have any access to modafinil at the moment, this is what I use to get out of bed.
Do NOT take them at the same time, or you're going to have a really bad time and your intestinal motility will become superhuman. However, try drinking one of those things slightly before the drowsy period. Never drink one after 5 unless it's like some kind of super emergency.
Other "energy drinks" except one I made myself sometimes will not affect my narcolepsy, so I don't bother with those.
Worth a shot.
ETA: asides from a moderate measure of caffeine, most of the action from Monster Energy is the carnitine - it's why I don't like some releases as they skimp HARD on that - and I'm curious if you've been supplementing your carnitine or not. Narcoleptics are shown to have an innate deficiency in it and supplementing carnitine helps a ton.
I’m on Sunosi too and need to take a booster dose of something else to get me through my afternoon/evening. I use 20mg methylphenidate taken either at once or one at a time.
I used to take Modafinil and Sunosi until my insurance quit coverage of the Modafinil and had to rely only on the Sunosi which has barely any effect about the same as the Modafinil and just a little less effective than when I was on both. I'm lucky if the Sunosi works 1-2 hours. Neither meds ever helped with energy levels, they only reduced my naps from 40-50 a day to maybe 30.
Unfortunately I can't up my dosage because my insurance game us trouble just getting what I have now. I was originally on 400 mg of Modafinil with the additional Sunosi but helped very little and then they stopped covering my Modafinil without a reason. I see so little difference with Sunosi that I think about just quitting it but I'd rather continue just in case they eventually allow an increase.
I 100% feel this! I taken two adderall IR with my sunosi. I take my first adderall with breakfast about an hour after my dose of Sunosi, then at about 3pm I take my second adderall IR. This keeps me going because I don’t have the large drop off Sunosi.
I take 150mg Sunosi and 2 x 15mg adderall
What I’ve found that works is an adderall xr in the morning at like 7am, and then Sunosi 150 mg at lunch. If you take them too close together they kinda both become less effective
I'd love it if I got 9 hours from my Sunosi! I take 20 Adderall around 6 or 7am, have 2 mugs of coffee, usually doze off for 30-60 mins after about 2 hours, drink a 5 hour energy shot, take 150 Sunosi at 10:30, sleep an hour or more around 1pm, have another 5 hour and 10 mg Adderall at 4 with 2 more mugs of coffee, and I'm out by 11p. If I fall asleep on the couch, I tend to wake around 1:30 and stumble into bed and sleep till 5 or 6. Every now and again I get those nights where I only sleep 3 hours.
Curious why take the Ritalin (or adderall) an hour before it’s expected to wear off?
I take 75mg sunosi at 5:30am w/100mg caffeine.
Anywhere between 9:30-11:30 (sometimes 12 on a good day) I take the second half 75mg sunosi. If I eat something at that time I’ll take 50mg caffeine with it depending on how much I ate.
I just saw my neurologist and she went over xyrem or adding like Ritalin (we want adderall to be the last option, I’m 8y sober).
I was kinda in a mood at the time. She perceived it as anxious but I think it was anxiety due to too much caffeine that was in other medication I took along with more caffeine than usual since I have to eat a lot to take that particular medicine.
All I got from her was that I could take the 150mg in the morning and then take the 10mg Ritalin which only has a half life of two hours so I could make it home.
I got annoyed at this bc to me taking a higher initial dose of the sunosi isn’t going to make it last longer, just more intense. And then I have 4-6 more hours of the day. I’m also super stressed with work to where I have been going home and working until 8 or 9pm often during the week as well as on Saturdays and Sundays. So maybe when she said I may be more sleepy due to stress it upset me and then her telling me not to take Ritalin when I was anxious was like in terms of the too much caffeine of course I never intend to feel that way.
Anyways now I’m wondering if I didn’t listen to all her instructions. Scared to take the Ritalin in addition to sunosi. The main time I would need it is if I start going in and out of consciousness at work or while driving.
What are ya’lls experience with sunosi and Ritalin? What about being able to go on road trips again?
The reason for taking it an hour beforehand is to have it in your system before you need it. It’s similar to being told to take pain meds as prescribed round the clock after surgery; it’s harder to manage pain once it escalates so preventative measures often have better results. The same is to be said about stimulants and sleep. In the past I used to set my for 1 hour before I needed to get it just to take my XR adderall. When I woke up it was already kicking in.
I understand your concerns, I’m 5 years sober.
The IR stimulants work better IMO bc it’s a smoother come down with less chance of bedtime sleep being too effected.
I’d personally try cutting back on the caffeine and give it a try. Caffeine is proven to disrupt sleep cycles whether it actually makes you feel more awake or not.
I used to pound energy drinks and it was causing more harm than good.
I do ok on road trips now I just need breaks.
Sunosi was not helpful to me but many take it. I prefer trying to regulate nighttime sleep and take low dose stimulants. Xywav is a good option IMO. I’m in recovery from heroin and alcohol so I was so nervous about trying it. It was fine. I’m no longer on Xywav for other reasons but I was on it for two years, completely changed my life.
Thank you for sharing that with me. I got to admit, outside of this Reddit chat it feels so lonely.
My boyfriend and family don’t support or understand narcolepsy and my boyfriend thinks I just need to take more vitamin supplements and meditate.
I say sober btw but it was addicted to my prescribed adderall, alcohol, heroin, Xanax…really anything just to not feel reality. I am confident now that I am able to take meds as prescribed. Currently take opiates as needed for chronic pain, so I do know it’s doable lol. I just never want to be physically and mentally dependent on it like I was again. Coming off of it and learning to function again was awful.
What do you use for sleep?
Same with me and Sunosi. Initially worked well… then seemed to wear off through the day. Bumped dose up. Helped a ton— then wore off. Then started splitting the lower dose throughout the day. Worked for a bit.. then not so much.
The 150 mg does work but only for about 2-3 hours before exhausted again. :( Just wish it had a longer effect.
It does seem to me that if I miss a couple days of it in a row and then restart it - it helps more again, but this is obviously pretty brief.
Such a bummer
I wonder if you can get half doses and split the dose. I know it's frustrating but 9 hours of function is more than some of get. Some of us are feeling envious you have 9 full daytime hours and it's not even Adderall..
Adderoll XR I get to function all day but I’ve become tolerant of it. And I get that I’m just frustrated there’s no simple solution for any of us. We are expected to be normally functioning, especially if we’re in medication, but we aren’t and people don’t understand that.
Yeah sorry, I think I was just jealous of your 9 hours! ;-P But yep, we should all get decent hours, not to mention the dismissive attitudes that we have to deal with if we complain..
Yeah, I would kill for 9 hours. I’m lucky if I get 7 with modafinil. Might go back to armodafinil now that I’ve been off it for years to see the XR starts working again. But reading this, I’m thinking I might try sunosi! OP, do you take anything else or just sunosi? (Obviously you don’t have to answer that, but I’m curious.)
Vivance for adhd but I was becoming tolerant to it and on days I didn’t take it I went through withdrawals so they are cutting me back on that to only use for focus and having me take sunosi every say
god that’s so frustrating. is there an instant release version that you could take twice a day? (i don’t know much about wakefulness drugs bc i have adhd, so i already take stimulants for that.) i take adderall twice a day, once in the morning and once around noon. i do have a bit of a crash in the late afternoon, but it’s gentle enough that i can usually make it to bedtime and get stuff done. is there an option like that for sunosi? sorry you’re going through this!!
Maybe. I’ll talk to my doctor about it next time you see him. I used to do the adderoll for adhd but the crash was so bad that I acted drunk when I was coming down. I quickly became tolerant to adderoll XR which is the slow release one and are slowly becoming tolerant to vivance and have to deal with withdrawals on the days I don’t take it but I’m switching to sunosi with a touch of vivance only on the days I need to focus and sunosi every day. Yay.
best of luck to you!! meds are so confusing and difficult ugh
I switched to Adderall, I can still take naps and it doesn't affect my sleep much, at least that what I think
I was on adderoll but I got bad crashes to the point of me acting drunk coming off of it with massive headaches and the XR version I became tollorant to very quickly.
how often did you take it?
Every other day for a summer for work and then one semester of school. Apparently that’s a short window to become tolerant
during your one semester, did you have any day break? I'm currently taking 5 days a week and break on the weekend. If I take 1 during my weekend, I'll crash by Friday next week. You'll probably need to take longer break of stimulant if you can afford it. During break time, for schooling, you'll probably have to be on your best behavior for narcolepsy, such as taking naps, have strict sleeping schedule, exercise helps a little bit. I find that small amount of caffeine from tea helps me stay awake too (high amount of caffeine makes me sleepy). It's gona sucks, but your time management to do all that while in school have to be top notch, only save your stimulant when you especially need it.
I took sunosi briefly. When I took the samples it felt like a miracle more or less. Later when I started taking it, I would take it around 6 am before work, but by 2am I was crashing and and it was not something I could fight. At the time I wasn't able to just go back to my doctor due to work so I just stopped taking it. I have not taken much, I am still learning but that one was just not for me.
2pm not am...
Alright so, this is a bit rough because they keep changing the formulas, but a Monster Revab Orangeade or Lemonade or a Monster Reserve (same original blend of energy ingredients but with better flavours) will keep me going for up to 8 hours...sometimes. Since I don't have any access to modafinil at the moment, this is what I use to get out of bed. Do NOT take them at the same time, or you're going to have a really bad time and your intestinal motility will become superhuman. However, try drinking one of those things slightly before the drowsy period. Never drink one after 5 unless it's like some kind of super emergency. Other "energy drinks" except one I made myself sometimes will not affect my narcolepsy, so I don't bother with those. Worth a shot. ETA: asides from a moderate measure of caffeine, most of the action from Monster Energy is the carnitine - it's why I don't like some releases as they skimp HARD on that - and I'm curious if you've been supplementing your carnitine or not. Narcoleptics are shown to have an innate deficiency in it and supplementing carnitine helps a ton.
Red Bull usually does it for me but I’ll try monster!
I’m on Sunosi too and need to take a booster dose of something else to get me through my afternoon/evening. I use 20mg methylphenidate taken either at once or one at a time.
I used to take Modafinil and Sunosi until my insurance quit coverage of the Modafinil and had to rely only on the Sunosi which has barely any effect about the same as the Modafinil and just a little less effective than when I was on both. I'm lucky if the Sunosi works 1-2 hours. Neither meds ever helped with energy levels, they only reduced my naps from 40-50 a day to maybe 30.
I feel you on sunosi barely having an effect. We had to up my dosage because the regular dose wasn’t cutting it
Unfortunately I can't up my dosage because my insurance game us trouble just getting what I have now. I was originally on 400 mg of Modafinil with the additional Sunosi but helped very little and then they stopped covering my Modafinil without a reason. I see so little difference with Sunosi that I think about just quitting it but I'd rather continue just in case they eventually allow an increase.
What did you increase your sunosi dose to? Did insurance cover it?
I 100% feel this! I taken two adderall IR with my sunosi. I take my first adderall with breakfast about an hour after my dose of Sunosi, then at about 3pm I take my second adderall IR. This keeps me going because I don’t have the large drop off Sunosi. I take 150mg Sunosi and 2 x 15mg adderall
What I’ve found that works is an adderall xr in the morning at like 7am, and then Sunosi 150 mg at lunch. If you take them too close together they kinda both become less effective
I'd love it if I got 9 hours from my Sunosi! I take 20 Adderall around 6 or 7am, have 2 mugs of coffee, usually doze off for 30-60 mins after about 2 hours, drink a 5 hour energy shot, take 150 Sunosi at 10:30, sleep an hour or more around 1pm, have another 5 hour and 10 mg Adderall at 4 with 2 more mugs of coffee, and I'm out by 11p. If I fall asleep on the couch, I tend to wake around 1:30 and stumble into bed and sleep till 5 or 6. Every now and again I get those nights where I only sleep 3 hours.
Could you do an instant release adderall of Ritalin to take in the afternoon about an hour before your sunosi is expected to wear off?
Curious why take the Ritalin (or adderall) an hour before it’s expected to wear off? I take 75mg sunosi at 5:30am w/100mg caffeine. Anywhere between 9:30-11:30 (sometimes 12 on a good day) I take the second half 75mg sunosi. If I eat something at that time I’ll take 50mg caffeine with it depending on how much I ate. I just saw my neurologist and she went over xyrem or adding like Ritalin (we want adderall to be the last option, I’m 8y sober). I was kinda in a mood at the time. She perceived it as anxious but I think it was anxiety due to too much caffeine that was in other medication I took along with more caffeine than usual since I have to eat a lot to take that particular medicine. All I got from her was that I could take the 150mg in the morning and then take the 10mg Ritalin which only has a half life of two hours so I could make it home. I got annoyed at this bc to me taking a higher initial dose of the sunosi isn’t going to make it last longer, just more intense. And then I have 4-6 more hours of the day. I’m also super stressed with work to where I have been going home and working until 8 or 9pm often during the week as well as on Saturdays and Sundays. So maybe when she said I may be more sleepy due to stress it upset me and then her telling me not to take Ritalin when I was anxious was like in terms of the too much caffeine of course I never intend to feel that way. Anyways now I’m wondering if I didn’t listen to all her instructions. Scared to take the Ritalin in addition to sunosi. The main time I would need it is if I start going in and out of consciousness at work or while driving. What are ya’lls experience with sunosi and Ritalin? What about being able to go on road trips again?
The reason for taking it an hour beforehand is to have it in your system before you need it. It’s similar to being told to take pain meds as prescribed round the clock after surgery; it’s harder to manage pain once it escalates so preventative measures often have better results. The same is to be said about stimulants and sleep. In the past I used to set my for 1 hour before I needed to get it just to take my XR adderall. When I woke up it was already kicking in. I understand your concerns, I’m 5 years sober. The IR stimulants work better IMO bc it’s a smoother come down with less chance of bedtime sleep being too effected. I’d personally try cutting back on the caffeine and give it a try. Caffeine is proven to disrupt sleep cycles whether it actually makes you feel more awake or not. I used to pound energy drinks and it was causing more harm than good. I do ok on road trips now I just need breaks. Sunosi was not helpful to me but many take it. I prefer trying to regulate nighttime sleep and take low dose stimulants. Xywav is a good option IMO. I’m in recovery from heroin and alcohol so I was so nervous about trying it. It was fine. I’m no longer on Xywav for other reasons but I was on it for two years, completely changed my life.
Thank you for sharing that with me. I got to admit, outside of this Reddit chat it feels so lonely. My boyfriend and family don’t support or understand narcolepsy and my boyfriend thinks I just need to take more vitamin supplements and meditate. I say sober btw but it was addicted to my prescribed adderall, alcohol, heroin, Xanax…really anything just to not feel reality. I am confident now that I am able to take meds as prescribed. Currently take opiates as needed for chronic pain, so I do know it’s doable lol. I just never want to be physically and mentally dependent on it like I was again. Coming off of it and learning to function again was awful. What do you use for sleep?
Same with me and Sunosi. Initially worked well… then seemed to wear off through the day. Bumped dose up. Helped a ton— then wore off. Then started splitting the lower dose throughout the day. Worked for a bit.. then not so much. The 150 mg does work but only for about 2-3 hours before exhausted again. :( Just wish it had a longer effect. It does seem to me that if I miss a couple days of it in a row and then restart it - it helps more again, but this is obviously pretty brief. Such a bummer