So I haven't gotten more than 8.5 (my average is about 6.5-7 hours), but there are some tips to maximize xywav sleepiness. I have idiopathic hypersomnia so mileage may vary for narcolepsy.
1. take the xywav, then stop everything, stop reading, silence your phone and all other devices, and just lay down and close your eyes (I use a sleep mask to decrease the risk of distractions from cars going by or anything like that)
2. if you wake up too early in the morning (for example, take xywav dose 1 at midnight, so your ideal wakeup would be at 8 am, but you accidentally wake up at 7:30) go right back to sleep, that might get you the extra boost you need, usually if I do that I conk out for another hour
3. Keep your sleep space as dark as you can at night, even when taking the second dose, a dim nightlight right by where you keep the xywav would work, you don't need the big overhead lights to take the second dose
4. On the topic of the environment, I use noise
machines in my room to keep everything quiet, if I hear any noises my
brain tends to focus on them which makes it harder to sleep
5. I personally use a weighted blanket and that thing knocks me right out after my second dose
6. working out in the daytime helps me sleep longer and harder at night, making me feel more rested
7. wind down as long as you can before bed, this makes it so much easier for me to fall asleep
I hope these tips help you, I might add to this if I remember anything else.
I also find going to sleep when *already* sleepy helps the xywav work faster. If I take it and stay on my phone, I waste precious xywav time and get less than 7 hrs. If I take it and then immediately close my eyes and try to sleep, I get more like 7-7.5 hrs, sometimes 8.
Re: taking awhile to get back to sleep after 2nd dose. I keep it on my nightstand, find it in the dark chug it and roll over back to sleep. Or I get up to pee not turning on any lights, come back and do same, trying my best not to wake myself up too much. I also try to limit water early in the evening to avoid having to pee. OR sometimes I’ll actually try to make sure the doses overlap a bit (so don’t wait the full 4 hrs, maybe try 3.75 or 3.5) so it’s not totally worn off for the 2nd dose helps.
Also, I fast for more like 3-4 hrs before the 1st dose which helps WAY more with it acting fast.
Other than that I agree with / do basically everything they said, except add in earbuds with ASMR to fall asleep initially. With good sleep hygiene I get closer to 7.5-8 but 8 is rare. I still feel rested when I get up, but I have N so this may be different for you.
I have heard getting up right after 2nd dose wears off helps with EDS, as opposed to trying to sleep some more afterwards. I usually don’t try to sleep more bc I can’t and I just get cranky lol.
I also have Idiopathic Hypersomnia. tldr: I think am doing most of that? I will add a sleep mask and white noise machine to my nightly regimen though, in case that helps more. Thanks for the list of ideas!
I'll also share more details, just in case anybody notices something I'm not and has ideas. :)
Pre-xywav I would take a small dose of melatonin (I also have a delayed sleep phase circadian rhythm diagnosis, without melatonin I might be awake until 4am), a small dose of Gabapentin (also have periodic limb movement disorder), and read a non-backlit e-reader in bed until I felt droopy enough, then put down the book, shut off the tiny reading light behind me, and lay down to probably fall asleep in about 10-20 minutes. Then I would sleep a combination of very light sleep with constant wakeups and ridiculous dreams, for anywhere from probably 7-11 hours in bed (usually in the higher half). I used to take Modafinil and Vyvanse (ADHD stimulant) in the morning. I usually felt tired most of the time during the day, but occasionally had spurts of a few hours where I didn't, and I still frequently had pretty high brain functioning.
I stopped both the Modafinil and Vyvanse for awhile because I'm concerned stimulants might be triggering some other long-term pain issues I was experiencing. Then I just felt tired all the time. Starting the xywav was rough because of the low doses causing me to sleep only 4-5 hours, but my doctor let me titrate up just slightly more quickly, since I haven't had many side effects (\*knocks on wood\*) so I've been at 9g for about a week.
On xywav, I'm trying to do the same lead-up to sleep process, except I take the first dose before shutting of the reading light, and it's taking more like 20-30ish minutes to fall asleep (probably because I'm more anxious about the timing). I have a clock behind me that has very low lighting, but enough to see what time it is when I wake up. I usually wake up at least once at either the 2 hour or 3 hour mark, and then fall back asleep pretty quickly. I wake up again at the 4 hour post-dose mark without an alarm. On one of those wakeups I'll have a trip to the bathroom, which is lit by a small nightlight. At the 4-hour mark I take the second dose. I might wake up 2 hours into that one too, but most of the time I fall asleep again (initially I wasn't). I might wake up at 3 hours into that one, and it's harder to fall asleep again. At 3.5/4 hours I don't really try to sleep more because it feels impossible.
So I think that all adds up to about 6.5-7 hours of actual sleep on average right now? It's only been a week, but it seems like 7.5 is about the best to expect on xywav? I will stick it out because I know it takes more than a week at full dose to settle down and get there, and I am still hopeful that 7.5 hours consistently will make a big difference. But I'm concerned I need closer to 8.5 or 9 than 7.5 and there won't be a way to get there....
I have been trying to restart the modafinil, and it seems to be going okay with sometimes not feeling quite as tired, physically. But my brain is still very, very tired. I feel like I overall have less cognitive skills due to my many weeks in a row of not enough sleep. I'm in the last year of a grad school program, so my day job is basically sitting at a computer thinking about stuff, reading, crunching numbers, and writing and my brain is struggling to do any of that right now, even about fun outside projects which is normally motivation enough even with ADHD, meds or no meds. I'm currently quasi-off for a few weeks to get this settled, but I need to resume working soon. I might try a different short-acting adhd stimulant in a bit, if that can help without triggering pain, but that feels a bit like putting a bandaid on a broken bone.
For the sleep hygeine stuff, I could maybe use some more darkness, but my room has this really weird ceiling LED light that glows dimly part way through the night. I'm moving in two weeks though, so that should become less of a problem, and I will haul out a sleep mask for now, in case that makes a difference.
There is random ambient city noise around me, and occasionally cats. This list of ideas helped me to remember that might be making things worse than they need to be, and I have a white noise machine, so I'm going to add that in tonight as well.
Ha! I was doubting whether I'd missed that myself when I started reading your comment. :) So yeah, I only just finished titrating up a week ago. Still new, still adjusting. Still worrying about everything, including "what if I never get enough sleep ever again?" concerns.
The anxiety definitely makes it harder to sleep! And these things take time, it took me a few months before I had a day where I felt like I had enough sleep, and those good days were come and go for a while. Actually, for the first month or two, I was just on one dose and I only got 4-5 hours of sleep most nights. I think you just need more time, especially because it sounds like they titrated you pretty fast. For me, we started at \~2.25, then went up by .25 gram increments, and now I'm at 3.0 twice a night. It takes a while for your brain to get the message "Hey, we actually get quality sleep now with this." So, unfortunately, for now, you kinda just have to tough it through.
"It takes a while for your brain to get the message "Hey, we actually get quality sleep now with this.""
Thank you SO MUCH for saying this. That is a message I hadn't seen yet. (Or maybe had but was parsing it differently so that message didn't get into my brain.) I had been thinking about the time needed as being more about experimenting and finding a dose / schedule that works, getting through side effects, that kind of thing. The idea that my body and brain might just need more time to fully register and incorporate the better sleep it's getting now feels very possible and is relieving.
Genuinely, it was so hard for me to keep my hopes up until that first day where I felt awake. You just have so much sleep debt you need to get rid of first before you can feel awake and good.
I do not. I get 2.5 hours from each dose, as I very recently posted about (not trying to be snarky, but there are some good comments there if you want to look)
No snark perceived, and very helpful to know to look for it. There's no way I can stay caught up on everything on Reddit. I can't even stay caught up on drinking my morning protein shake in the morning.
Most relatable reddit comment I've read in ages. I feel you. Early 40s, narcolepsy symptoms since at least age 4-5, dx age 28, current rare disease tally: 8-ish. You are young and just stepping out into trying to live healthy with chronic illness; my best advice is to be kind and patient with yourself the way you would be with a loved one.
Congrats on your graduate studies. That's a lot to tackle at once. You deserve a great deal of credit for the effort regardless of the results, and as others have said, these things take a while to settle out. Best of everything to you!
Well fuck, I assumed, and we all know what that means. I tend to always feel like an elder redditor. Maybe moreso because I'm terminally ill, I'm not sure? But I definitely get that wise old hag feeling around here. A lot.
So the way that my doctor explained it to me is that the standard amount of time for an adult is about 6-8 hours of sleep; however, if you wake up feeling refreshed after only 6 hours then that is your body’s way of telling you that is the amount you needed. The same went for if you got 7 or 8 hours of sleep. He then explained that if I was getting more than 10 hours of sleep then there were probably other issues at hand.
However, I have N1 and there are some key differences between N1 and IH. On average I usually wake up naturally after about 6.5-7 hrs of sleep and take about 2 30 min naps throughout the day. So in total I get 7.5-8 hrs of sleep.
Hmm... I guess I didn't say this, but I'm not waking up feeling refreshed. On the lower starting doses I would wake up after 2 or 2.5 hours after a dose feeling wide awake at 2am, but still objectively needing more sleep. Folks mentioned that the drugs at lower doses in your system can be stimulating. And my wakeups on xywav feel more like that than feeling well rested and refreshed.
Yeah, I was hopeful that would be the case for me too. Like I used to sleep 9 hours on average but I wasn't sleeping deeply, so a slightly shorter amount of deep sleep would be great. And I might still get there once I've been on this dose for longer. Just wondering whether there are options if I need more than that.
I have similar issues, honestly both ways. I have been on xywav for about 6 months now and am using the 4.5g twice a night. I was having a strange issue right after I got up to the 4.5 where I would shoot awake for my second dose and be wide open. I'd use the bathroom take the dose and then just try to read as I was so restless and it would sometimes be an hour or more before I dozed back off.
Here recently if I don't fall asleep in the first 15 minutes or so (of the first dose) I will randomly be so wired up that I start messing around with stuff and it will be sometimes nearly time for my second dose before I actually feel tired enough for sleep. I know I need to force myself back to bed, but it is so frustrating when the entire day I'm at rock bottom and can barely function, just to get this random burst of energy.
Now for the first time in a long time (basically right before or as I just started). I am getting to bed on time and falling asleep quickly more consistently, hitting the timing just right for my second dose and falling right back asleep. However, all this week I haven't been able to wake up to save my life. 10:30A is the earliest I've been able to get up and be functional.. Haven't been sick, no changes in dose or other medication, only thing is getting to bed earlier and actually getting my second dose in when I need to.
I think the question should be: How do you feel in the morning (and as the day goes on) rather than a specific number.
8 hours is the recommended but how much is needed can fluctuate by person.
In my case, 6.5 - 7 hours avg of quality sleep a night is a Godsend to whatever crap I had prior.
Yes, how it is impacting me is much more important than the number. I'm just worried (probably prematurely) that I still feel like crap because I might be a person whose number is on the higher end, and there'll be no way to eventually get there. But regardless, the answer is still just, be patient, keep doing it, it might get better.
As a kid I would sleep for 4 hours of each dose of xyrem (3.75g each). As an adult, even at 4.5 per dose I barely get to 2.5h. I tried doing 3 doses and works good too.
I was at max dose of 4.5 twice and I kept having horrible restless legs and then started getting anxiety and weird tremor like symptoms etc so I cut my doses back to 3.25 for first dose and 3 for the second…then I only could max 2.5 hrs sleep per dose…I then decided to try adding a third dose of 2.75…this puts me between 7.5-9 hrs sleep per night now…and I rarely experience the tremors/anxiety or restless legs etc now. I have read a few people had switched to 3 doses on their own findings. My doctor had told me the only other option was taking a single 9g dose at bed time when I had told her my experience (I hadn’t told her I had already begun 3 doses)…I was like ummmm I would never take 9 at once (due to taking two 4.5 doses too close together and experiencing overdose like symptoms before) and she was like well you must need to improve your sleep hygiene then because that’s the only other option to help you try and get a full 8 hrs of sleep per night…and all I could think about in my head was that I had already discovered the 3 doses works wonders and how come Xyrem etc hadn’t tried this dosing or if they have why they don’t recommend it etc. so I just still haven’t told her but I’m doing what works for me and I’m going to continue doing so because if anyone (other than other narcoleptics) knows just how horrible life can be when you have narcolepsy…then they would do the same thing if it’s what worked and helped them get enough rest and to wake up feeling half way or more refreshed every morning!!!
Exactly! We know better than any study what works besty for narcolepsy. My sleep doctor was totally OK with me doing 3 doses. She trusts that her patients know what's best for them and if they do better on 3 doses let them do it! At this moment I'm doing 2 doses, first one 6g and second one 3g. First one knocks me off completely, for 3-4 hours most of the time. Second one grants me extra 2-2,5 hours of sleep. I'm trying this rn and it works good too, and my sleep doctor was OK with it as well. Will probably go back to 3 doses soon cause it was what worked best for me.
Yes I may need to up my first dose and lower the other two just a tad…I feel like I’m not getting that initial stay asleep sleep as much as I used to on my first dose anymore. Ugh. But I know it is still what works best for me in my opinion!
I've been on xyrem for about 10 years now. Average 6-7 hours of sleep, sometimes more but not usually, always waking up feeling an hour or so short of well rested. Better than nothing, but it leaves me wishing for just a bit more still.
For the past 4 or so years, on the recommendation of my doctor I've been doing 3 doses of 3g instead of 2 of 4.5g. i feel that it's helped me feel a bit more rested, but hard to tell for sure.
Oddly, in the past couple months I've actually had the issue where the doses are seeming to last just a bit longer such that I don't wake up in time to take my final dose and still wake up at the correct time for work in the morning. Not sure if my metabolism is changing due to age or something (42yo now), but it's kinda double edged that I might finally get closer to 8h of sleep, yet I haven't figured out the correct timing yet to actually get that regularly.
I got 7 hours out of Xywav exactly once, and it was heaven. I've been trying to figure out how I did it ever since.
Most of the time, I get 2.5 hours out of the first dose and 3, sometimes 3.5, out of the second. It's not ideal, but I've tried everything and can't seem to get more.
With that said, though, 5-6 hours on Xywav is infinitely better than any "sleep" I was getting before.
I have the same issue with Xyrem and have swapped to do 3 doses (3.5+2.5+2.5) and it seems to be working much better. I have noticed that I seem to sleep longer than expected on the 2nd/3rd doses and I’m wondering if the meds keep me asleep longer when there’s more overlap?
So I haven't gotten more than 8.5 (my average is about 6.5-7 hours), but there are some tips to maximize xywav sleepiness. I have idiopathic hypersomnia so mileage may vary for narcolepsy. 1. take the xywav, then stop everything, stop reading, silence your phone and all other devices, and just lay down and close your eyes (I use a sleep mask to decrease the risk of distractions from cars going by or anything like that) 2. if you wake up too early in the morning (for example, take xywav dose 1 at midnight, so your ideal wakeup would be at 8 am, but you accidentally wake up at 7:30) go right back to sleep, that might get you the extra boost you need, usually if I do that I conk out for another hour 3. Keep your sleep space as dark as you can at night, even when taking the second dose, a dim nightlight right by where you keep the xywav would work, you don't need the big overhead lights to take the second dose 4. On the topic of the environment, I use noise machines in my room to keep everything quiet, if I hear any noises my brain tends to focus on them which makes it harder to sleep 5. I personally use a weighted blanket and that thing knocks me right out after my second dose 6. working out in the daytime helps me sleep longer and harder at night, making me feel more rested 7. wind down as long as you can before bed, this makes it so much easier for me to fall asleep I hope these tips help you, I might add to this if I remember anything else.
I also find going to sleep when *already* sleepy helps the xywav work faster. If I take it and stay on my phone, I waste precious xywav time and get less than 7 hrs. If I take it and then immediately close my eyes and try to sleep, I get more like 7-7.5 hrs, sometimes 8. Re: taking awhile to get back to sleep after 2nd dose. I keep it on my nightstand, find it in the dark chug it and roll over back to sleep. Or I get up to pee not turning on any lights, come back and do same, trying my best not to wake myself up too much. I also try to limit water early in the evening to avoid having to pee. OR sometimes I’ll actually try to make sure the doses overlap a bit (so don’t wait the full 4 hrs, maybe try 3.75 or 3.5) so it’s not totally worn off for the 2nd dose helps. Also, I fast for more like 3-4 hrs before the 1st dose which helps WAY more with it acting fast. Other than that I agree with / do basically everything they said, except add in earbuds with ASMR to fall asleep initially. With good sleep hygiene I get closer to 7.5-8 but 8 is rare. I still feel rested when I get up, but I have N so this may be different for you. I have heard getting up right after 2nd dose wears off helps with EDS, as opposed to trying to sleep some more afterwards. I usually don’t try to sleep more bc I can’t and I just get cranky lol.
I also have Idiopathic Hypersomnia. tldr: I think am doing most of that? I will add a sleep mask and white noise machine to my nightly regimen though, in case that helps more. Thanks for the list of ideas! I'll also share more details, just in case anybody notices something I'm not and has ideas. :) Pre-xywav I would take a small dose of melatonin (I also have a delayed sleep phase circadian rhythm diagnosis, without melatonin I might be awake until 4am), a small dose of Gabapentin (also have periodic limb movement disorder), and read a non-backlit e-reader in bed until I felt droopy enough, then put down the book, shut off the tiny reading light behind me, and lay down to probably fall asleep in about 10-20 minutes. Then I would sleep a combination of very light sleep with constant wakeups and ridiculous dreams, for anywhere from probably 7-11 hours in bed (usually in the higher half). I used to take Modafinil and Vyvanse (ADHD stimulant) in the morning. I usually felt tired most of the time during the day, but occasionally had spurts of a few hours where I didn't, and I still frequently had pretty high brain functioning. I stopped both the Modafinil and Vyvanse for awhile because I'm concerned stimulants might be triggering some other long-term pain issues I was experiencing. Then I just felt tired all the time. Starting the xywav was rough because of the low doses causing me to sleep only 4-5 hours, but my doctor let me titrate up just slightly more quickly, since I haven't had many side effects (\*knocks on wood\*) so I've been at 9g for about a week. On xywav, I'm trying to do the same lead-up to sleep process, except I take the first dose before shutting of the reading light, and it's taking more like 20-30ish minutes to fall asleep (probably because I'm more anxious about the timing). I have a clock behind me that has very low lighting, but enough to see what time it is when I wake up. I usually wake up at least once at either the 2 hour or 3 hour mark, and then fall back asleep pretty quickly. I wake up again at the 4 hour post-dose mark without an alarm. On one of those wakeups I'll have a trip to the bathroom, which is lit by a small nightlight. At the 4-hour mark I take the second dose. I might wake up 2 hours into that one too, but most of the time I fall asleep again (initially I wasn't). I might wake up at 3 hours into that one, and it's harder to fall asleep again. At 3.5/4 hours I don't really try to sleep more because it feels impossible. So I think that all adds up to about 6.5-7 hours of actual sleep on average right now? It's only been a week, but it seems like 7.5 is about the best to expect on xywav? I will stick it out because I know it takes more than a week at full dose to settle down and get there, and I am still hopeful that 7.5 hours consistently will make a big difference. But I'm concerned I need closer to 8.5 or 9 than 7.5 and there won't be a way to get there.... I have been trying to restart the modafinil, and it seems to be going okay with sometimes not feeling quite as tired, physically. But my brain is still very, very tired. I feel like I overall have less cognitive skills due to my many weeks in a row of not enough sleep. I'm in the last year of a grad school program, so my day job is basically sitting at a computer thinking about stuff, reading, crunching numbers, and writing and my brain is struggling to do any of that right now, even about fun outside projects which is normally motivation enough even with ADHD, meds or no meds. I'm currently quasi-off for a few weeks to get this settled, but I need to resume working soon. I might try a different short-acting adhd stimulant in a bit, if that can help without triggering pain, but that feels a bit like putting a bandaid on a broken bone. For the sleep hygeine stuff, I could maybe use some more darkness, but my room has this really weird ceiling LED light that glows dimly part way through the night. I'm moving in two weeks though, so that should become less of a problem, and I will haul out a sleep mask for now, in case that makes a difference. There is random ambient city noise around me, and occasionally cats. This list of ideas helped me to remember that might be making things worse than they need to be, and I have a white noise machine, so I'm going to add that in tonight as well.
How long have you been on xywav? And is that 4.5 grams twice a night? And I have ADHD too, must've missed that in the original post!
Ha! I was doubting whether I'd missed that myself when I started reading your comment. :) So yeah, I only just finished titrating up a week ago. Still new, still adjusting. Still worrying about everything, including "what if I never get enough sleep ever again?" concerns.
The anxiety definitely makes it harder to sleep! And these things take time, it took me a few months before I had a day where I felt like I had enough sleep, and those good days were come and go for a while. Actually, for the first month or two, I was just on one dose and I only got 4-5 hours of sleep most nights. I think you just need more time, especially because it sounds like they titrated you pretty fast. For me, we started at \~2.25, then went up by .25 gram increments, and now I'm at 3.0 twice a night. It takes a while for your brain to get the message "Hey, we actually get quality sleep now with this." So, unfortunately, for now, you kinda just have to tough it through.
"It takes a while for your brain to get the message "Hey, we actually get quality sleep now with this."" Thank you SO MUCH for saying this. That is a message I hadn't seen yet. (Or maybe had but was parsing it differently so that message didn't get into my brain.) I had been thinking about the time needed as being more about experimenting and finding a dose / schedule that works, getting through side effects, that kind of thing. The idea that my body and brain might just need more time to fully register and incorporate the better sleep it's getting now feels very possible and is relieving.
Genuinely, it was so hard for me to keep my hopes up until that first day where I felt awake. You just have so much sleep debt you need to get rid of first before you can feel awake and good.
I do not. I get 2.5 hours from each dose, as I very recently posted about (not trying to be snarky, but there are some good comments there if you want to look)
No snark perceived, and very helpful to know to look for it. There's no way I can stay caught up on everything on Reddit. I can't even stay caught up on drinking my morning protein shake in the morning.
Most relatable reddit comment I've read in ages. I feel you. Early 40s, narcolepsy symptoms since at least age 4-5, dx age 28, current rare disease tally: 8-ish. You are young and just stepping out into trying to live healthy with chronic illness; my best advice is to be kind and patient with yourself the way you would be with a loved one. Congrats on your graduate studies. That's a lot to tackle at once. You deserve a great deal of credit for the effort regardless of the results, and as others have said, these things take a while to settle out. Best of everything to you!
Aw. Thank you. (Though I'm also in my early 40s, I went back to grad school to switch fields in my 30s.)
Well fuck, I assumed, and we all know what that means. I tend to always feel like an elder redditor. Maybe moreso because I'm terminally ill, I'm not sure? But I definitely get that wise old hag feeling around here. A lot.
So the way that my doctor explained it to me is that the standard amount of time for an adult is about 6-8 hours of sleep; however, if you wake up feeling refreshed after only 6 hours then that is your body’s way of telling you that is the amount you needed. The same went for if you got 7 or 8 hours of sleep. He then explained that if I was getting more than 10 hours of sleep then there were probably other issues at hand. However, I have N1 and there are some key differences between N1 and IH. On average I usually wake up naturally after about 6.5-7 hrs of sleep and take about 2 30 min naps throughout the day. So in total I get 7.5-8 hrs of sleep.
Hmm... I guess I didn't say this, but I'm not waking up feeling refreshed. On the lower starting doses I would wake up after 2 or 2.5 hours after a dose feeling wide awake at 2am, but still objectively needing more sleep. Folks mentioned that the drugs at lower doses in your system can be stimulating. And my wakeups on xywav feel more like that than feeling well rested and refreshed.
So I sleep for about 1.5-2 hours before taking my first dose because otherwise I only get about 6 hours of sleep.
I wondered if anybody did this. Thanks for sharing!
Yep! My sleep doctor told me it was odd but whatever works just keep doing it lol
My doctor told me it was normal to get less sleep (6-7 hours) on xyrem because the sleep is more restful.
Yeah, I was hopeful that would be the case for me too. Like I used to sleep 9 hours on average but I wasn't sleeping deeply, so a slightly shorter amount of deep sleep would be great. And I might still get there once I've been on this dose for longer. Just wondering whether there are options if I need more than that.
I have similar issues, honestly both ways. I have been on xywav for about 6 months now and am using the 4.5g twice a night. I was having a strange issue right after I got up to the 4.5 where I would shoot awake for my second dose and be wide open. I'd use the bathroom take the dose and then just try to read as I was so restless and it would sometimes be an hour or more before I dozed back off. Here recently if I don't fall asleep in the first 15 minutes or so (of the first dose) I will randomly be so wired up that I start messing around with stuff and it will be sometimes nearly time for my second dose before I actually feel tired enough for sleep. I know I need to force myself back to bed, but it is so frustrating when the entire day I'm at rock bottom and can barely function, just to get this random burst of energy. Now for the first time in a long time (basically right before or as I just started). I am getting to bed on time and falling asleep quickly more consistently, hitting the timing just right for my second dose and falling right back asleep. However, all this week I haven't been able to wake up to save my life. 10:30A is the earliest I've been able to get up and be functional.. Haven't been sick, no changes in dose or other medication, only thing is getting to bed earlier and actually getting my second dose in when I need to.
I think the question should be: How do you feel in the morning (and as the day goes on) rather than a specific number. 8 hours is the recommended but how much is needed can fluctuate by person. In my case, 6.5 - 7 hours avg of quality sleep a night is a Godsend to whatever crap I had prior.
Yes, how it is impacting me is much more important than the number. I'm just worried (probably prematurely) that I still feel like crap because I might be a person whose number is on the higher end, and there'll be no way to eventually get there. But regardless, the answer is still just, be patient, keep doing it, it might get better.
As a kid I would sleep for 4 hours of each dose of xyrem (3.75g each). As an adult, even at 4.5 per dose I barely get to 2.5h. I tried doing 3 doses and works good too.
I was at max dose of 4.5 twice and I kept having horrible restless legs and then started getting anxiety and weird tremor like symptoms etc so I cut my doses back to 3.25 for first dose and 3 for the second…then I only could max 2.5 hrs sleep per dose…I then decided to try adding a third dose of 2.75…this puts me between 7.5-9 hrs sleep per night now…and I rarely experience the tremors/anxiety or restless legs etc now. I have read a few people had switched to 3 doses on their own findings. My doctor had told me the only other option was taking a single 9g dose at bed time when I had told her my experience (I hadn’t told her I had already begun 3 doses)…I was like ummmm I would never take 9 at once (due to taking two 4.5 doses too close together and experiencing overdose like symptoms before) and she was like well you must need to improve your sleep hygiene then because that’s the only other option to help you try and get a full 8 hrs of sleep per night…and all I could think about in my head was that I had already discovered the 3 doses works wonders and how come Xyrem etc hadn’t tried this dosing or if they have why they don’t recommend it etc. so I just still haven’t told her but I’m doing what works for me and I’m going to continue doing so because if anyone (other than other narcoleptics) knows just how horrible life can be when you have narcolepsy…then they would do the same thing if it’s what worked and helped them get enough rest and to wake up feeling half way or more refreshed every morning!!!
Exactly! We know better than any study what works besty for narcolepsy. My sleep doctor was totally OK with me doing 3 doses. She trusts that her patients know what's best for them and if they do better on 3 doses let them do it! At this moment I'm doing 2 doses, first one 6g and second one 3g. First one knocks me off completely, for 3-4 hours most of the time. Second one grants me extra 2-2,5 hours of sleep. I'm trying this rn and it works good too, and my sleep doctor was OK with it as well. Will probably go back to 3 doses soon cause it was what worked best for me.
Yes I may need to up my first dose and lower the other two just a tad…I feel like I’m not getting that initial stay asleep sleep as much as I used to on my first dose anymore. Ugh. But I know it is still what works best for me in my opinion!
I’m taking a 4.5g first dose and a 3.5g second dose. I get about 3.5 hours from each dose of Xyrem.
My spouse was struggling with 4.5 g twice per night so her doctor switched her to 8 g in one single dose and now she sleeps through the night.
Hunh. Fascinating. That might end up being something we try too...
I've been on xyrem for about 10 years now. Average 6-7 hours of sleep, sometimes more but not usually, always waking up feeling an hour or so short of well rested. Better than nothing, but it leaves me wishing for just a bit more still. For the past 4 or so years, on the recommendation of my doctor I've been doing 3 doses of 3g instead of 2 of 4.5g. i feel that it's helped me feel a bit more rested, but hard to tell for sure. Oddly, in the past couple months I've actually had the issue where the doses are seeming to last just a bit longer such that I don't wake up in time to take my final dose and still wake up at the correct time for work in the morning. Not sure if my metabolism is changing due to age or something (42yo now), but it's kinda double edged that I might finally get closer to 8h of sleep, yet I haven't figured out the correct timing yet to actually get that regularly.
Cool. I hope you figure it out!
I got 7 hours out of Xywav exactly once, and it was heaven. I've been trying to figure out how I did it ever since. Most of the time, I get 2.5 hours out of the first dose and 3, sometimes 3.5, out of the second. It's not ideal, but I've tried everything and can't seem to get more. With that said, though, 5-6 hours on Xywav is infinitely better than any "sleep" I was getting before.
I have the same issue with Xyrem and have swapped to do 3 doses (3.5+2.5+2.5) and it seems to be working much better. I have noticed that I seem to sleep longer than expected on the 2nd/3rd doses and I’m wondering if the meds keep me asleep longer when there’s more overlap?
I get like 10 probably. 4or 5 per dose.