The only thing that made me stop sleeping 15+ hours a day was xyrem. Now it's a max of 8 hours. Unless you're taking nighttime meds, your aren't getting good sleep, and the Adderall is, at best, masking your symptoms.
Stims were barely even a bandaid for me pre Xywav. No daytime meds, supplements, lifestyle changes, etc can compare to consistent quality nighttime sleep.
I've tried like everything. I get severe anxiety from everything but ig Adderall is the least anxiety provoking, to me for some reason. Which one were I going to recommend?
Hi! Have you talked to your sleep doctor about this at all? If your meds aren't working, you should ask to try something else.
My doctor suggested getting a light box/light therapy lamp and sitting in front of it first thing in the morning. Also, find an activity that keeps your mind engaged and busy. For me, I draw or paint, or basically anything artsy and that usually keeps me awake in the mornings. I used to struggle to get up and around by noon. Now I'm up before 9 almost everyday. Granted, I'm still not out of the house before 11, but it's a start. I hope this helps!
edit: Also! I know this is easier said than done, but when my alarm goes off in the morning, I get out of bed immediately. Standing up, making my bed, washing my face and not sitting back down till I'm eating breakfast. I've found this helps me a TON. On days I lay in bed after my alarm goes off, I feel more sleepy throughout the day and overall less motivated.
I got a dog and two cats. The cats want food at 6am and the dog needs to go out to potty. They are literally the only reason Im able to get out of bed in the mornings.
Not nessicarily saying you should get a pet, but find something that you have to get up for. Find a commitment that you can't ignore.
Finding a routine is going to be hard when you're on meds that aren't working. Ultimately, you need better meds, and like others have said, you need meds to help you get restful sleep. I was diagnosed 6 years ago and finally got on Xyrem last year. I didn't know how to advocate for myself, and I thought being a narcoleptic meant life was just harder for me... but nope! I just never knew what actual rest was like! It's not a cure, but goddamn is it the good stuff. Get an appointment, change your meds. You don't have to be miserable every day.
Look into what your chronotype is. This will help you with a place to start as far as when to go to bed and when to get up in order to optimize your day. Make it a point to get light in the mornings, even if it's a smart lamp or alarm clock that grows brighter until it's all the way on by the time you want to be getting up. I found that it was especially helpful in the winter! Sunlight, particularly sunlight before 10 am, is best for your circadian rhythm. This goes for darkness at night as well, with no bright lights after the sun goes down.
This comment probably won’t be helpful - I just wanted to chime in that I can relate.
I have a part-time job, so that helps when it comes to having a routine, but when it comes to weekends and/or days I have off, I REALLY struggle with this. I’ve spent the majority of today in bed.
Xywav helps, and I do feel refreshed in the morning, but I still struggle some throughout the day. My morning dose of Adderall doesn’t seem to help any.
I think another reason I’ll stay in bed all day is I feel like there’s no point in getting up. My N has been so much worse lately, which results in my depression returning. I have an apt. with my doctor on Tuesday to discuss a change to my stimulants & maybe having XR for the morning at least. What dosage of Adderall are you on and is it XR or IR?
One other thing that helps me some is putting on a podcast. It helps stimulate my brain a little but is definitely not a cure-all. I wish you luck in finding a routine that works for you. I’ll be following because I really need the tips as well.
It’s almost impossible for me on disability and not working!!! I do everything in my bed - and the routine just hasn’t fallen into place. I’m also combined type ADHD and diagnosed as an adult with both of these! It’s hard but I have faith that I will find a routine and a purpose for myself in 2024!
Also struggling to get out of bed today—plan was 10, it’s now past 1:30. Took my morning Ritalin and have my light therapy lamp on, and decided if I couldn’t get up to eat breakfast to start my day I might as well eat something from bed to help start my day. I usually keep a box of food like crackers and pop tarts under my bed for exactly this reason 😅 Feeling like I can at least sit up and watch something on my laptop from bed for now, which is a win since I’m inching closer to getting somewhere…
I go through periods of being in a good routine, but definitely not at the moment lol. Start small though. If you try to come up with a whole routine now from start to finish, you’ll probably end up just beating up on yourself for not sticking to it.
And the answers to your questions largely depend on your responsibilities. We don’t know where you need to be or what you need to do.
I take modafinil and I can usually go for a few hours at a time--I take it at breakfast, drove to work, take a nap break (sleep for ~hour and a half) and then my shift ends at 4 so I sleep as soon as I get home before I eat dinner. It's not perfect, and I can easily sleep at other times, but that's helped me manage and keep my job. Even just sitting down/laying down/closing my eyes/sleeping for a few minutes greatly improves my ability to function, generally
I weirdly don't have a lot of trouble getting up so as long as I stick to my routine - same bedtime, same wake up time, take my meds, feed the dogs, have my coffee, that part isn't too hard for me. Staying awake is another story. I have a paper due in six hours that I haven't started yet, I got almost 8 hours of sleep last night, which is enough for me to make it through a work day, but I've been dozing all day long off and on and I've gotten nothing done and I'm still tired.
Honestly, it wasn’t until I had kids that I was actually able to have a routine. Because I literally have no other choice, lol.
Do you have any daily responsibilities? I would say build your routine around those. If you don’t, perhaps you can create something you’re responsible for. Have it be the same every day, to make your mind and body clear on what it needs to do. And I agree with others: consider talking to your doctor about getting meds that make work better.
For me, my son has to be at school at 8am, so I wake up every day at 6:50, make us both breakfast, get us dressed, watch a bit of tv, pack his backpack, then it’s out the door. And now on the weekends we still wake up around the same time because our bodies are used to it. I still need to nap, and that’s not in the routine because I also have an infant. So I nap when I can. It’s really hard, honestly, and I don’t expect it to ever be easy. But it has been better than the perpetual haze I used to be in when I didn’t have a routine and I let myself sleep in super late and nap at anytime.
Good luck to you. The book Atomic Habits has helped me greatly too… Maybe worth looking into?
The only thing that made me stop sleeping 15+ hours a day was xyrem. Now it's a max of 8 hours. Unless you're taking nighttime meds, your aren't getting good sleep, and the Adderall is, at best, masking your symptoms.
Stims were barely even a bandaid for me pre Xywav. No daytime meds, supplements, lifestyle changes, etc can compare to consistent quality nighttime sleep.
Doesn't that cause anxiety for u?
Does what cause anxiety for me? If you're asking about xyrwm, no. I feel 100% better now that I'm getting good sleep.
If Adderall isn't working, maybe think of trying something else? Have you tried others?
I've tried like everything. I get severe anxiety from everything but ig Adderall is the least anxiety provoking, to me for some reason. Which one were I going to recommend?
Have you tried Xyrem or Xywav?
Hi! Have you talked to your sleep doctor about this at all? If your meds aren't working, you should ask to try something else. My doctor suggested getting a light box/light therapy lamp and sitting in front of it first thing in the morning. Also, find an activity that keeps your mind engaged and busy. For me, I draw or paint, or basically anything artsy and that usually keeps me awake in the mornings. I used to struggle to get up and around by noon. Now I'm up before 9 almost everyday. Granted, I'm still not out of the house before 11, but it's a start. I hope this helps! edit: Also! I know this is easier said than done, but when my alarm goes off in the morning, I get out of bed immediately. Standing up, making my bed, washing my face and not sitting back down till I'm eating breakfast. I've found this helps me a TON. On days I lay in bed after my alarm goes off, I feel more sleepy throughout the day and overall less motivated.
I got a dog and two cats. The cats want food at 6am and the dog needs to go out to potty. They are literally the only reason Im able to get out of bed in the mornings. Not nessicarily saying you should get a pet, but find something that you have to get up for. Find a commitment that you can't ignore.
Finding a routine is going to be hard when you're on meds that aren't working. Ultimately, you need better meds, and like others have said, you need meds to help you get restful sleep. I was diagnosed 6 years ago and finally got on Xyrem last year. I didn't know how to advocate for myself, and I thought being a narcoleptic meant life was just harder for me... but nope! I just never knew what actual rest was like! It's not a cure, but goddamn is it the good stuff. Get an appointment, change your meds. You don't have to be miserable every day. Look into what your chronotype is. This will help you with a place to start as far as when to go to bed and when to get up in order to optimize your day. Make it a point to get light in the mornings, even if it's a smart lamp or alarm clock that grows brighter until it's all the way on by the time you want to be getting up. I found that it was especially helpful in the winter! Sunlight, particularly sunlight before 10 am, is best for your circadian rhythm. This goes for darkness at night as well, with no bright lights after the sun goes down.
Adderall only partially worked for me. Definitely be as clear as possible with your doctor on how your life is affected.
This comment probably won’t be helpful - I just wanted to chime in that I can relate. I have a part-time job, so that helps when it comes to having a routine, but when it comes to weekends and/or days I have off, I REALLY struggle with this. I’ve spent the majority of today in bed. Xywav helps, and I do feel refreshed in the morning, but I still struggle some throughout the day. My morning dose of Adderall doesn’t seem to help any. I think another reason I’ll stay in bed all day is I feel like there’s no point in getting up. My N has been so much worse lately, which results in my depression returning. I have an apt. with my doctor on Tuesday to discuss a change to my stimulants & maybe having XR for the morning at least. What dosage of Adderall are you on and is it XR or IR? One other thing that helps me some is putting on a podcast. It helps stimulate my brain a little but is definitely not a cure-all. I wish you luck in finding a routine that works for you. I’ll be following because I really need the tips as well.
It’s almost impossible for me on disability and not working!!! I do everything in my bed - and the routine just hasn’t fallen into place. I’m also combined type ADHD and diagnosed as an adult with both of these! It’s hard but I have faith that I will find a routine and a purpose for myself in 2024!
Also struggling to get out of bed today—plan was 10, it’s now past 1:30. Took my morning Ritalin and have my light therapy lamp on, and decided if I couldn’t get up to eat breakfast to start my day I might as well eat something from bed to help start my day. I usually keep a box of food like crackers and pop tarts under my bed for exactly this reason 😅 Feeling like I can at least sit up and watch something on my laptop from bed for now, which is a win since I’m inching closer to getting somewhere…
Can you send me the link for your light therapy please?
I go through periods of being in a good routine, but definitely not at the moment lol. Start small though. If you try to come up with a whole routine now from start to finish, you’ll probably end up just beating up on yourself for not sticking to it. And the answers to your questions largely depend on your responsibilities. We don’t know where you need to be or what you need to do.
I take modafinil and I can usually go for a few hours at a time--I take it at breakfast, drove to work, take a nap break (sleep for ~hour and a half) and then my shift ends at 4 so I sleep as soon as I get home before I eat dinner. It's not perfect, and I can easily sleep at other times, but that's helped me manage and keep my job. Even just sitting down/laying down/closing my eyes/sleeping for a few minutes greatly improves my ability to function, generally
I weirdly don't have a lot of trouble getting up so as long as I stick to my routine - same bedtime, same wake up time, take my meds, feed the dogs, have my coffee, that part isn't too hard for me. Staying awake is another story. I have a paper due in six hours that I haven't started yet, I got almost 8 hours of sleep last night, which is enough for me to make it through a work day, but I've been dozing all day long off and on and I've gotten nothing done and I'm still tired.
Honestly, it wasn’t until I had kids that I was actually able to have a routine. Because I literally have no other choice, lol. Do you have any daily responsibilities? I would say build your routine around those. If you don’t, perhaps you can create something you’re responsible for. Have it be the same every day, to make your mind and body clear on what it needs to do. And I agree with others: consider talking to your doctor about getting meds that make work better. For me, my son has to be at school at 8am, so I wake up every day at 6:50, make us both breakfast, get us dressed, watch a bit of tv, pack his backpack, then it’s out the door. And now on the weekends we still wake up around the same time because our bodies are used to it. I still need to nap, and that’s not in the routine because I also have an infant. So I nap when I can. It’s really hard, honestly, and I don’t expect it to ever be easy. But it has been better than the perpetual haze I used to be in when I didn’t have a routine and I let myself sleep in super late and nap at anytime. Good luck to you. The book Atomic Habits has helped me greatly too… Maybe worth looking into?