I was diagnosed with narcolepsy 3 weeks ago. Doctor put me on 150 mg of Nuvigil. Plans on changing the dosage to 300mg this week and put me on an ssri as well to help with the sleep paralysis. First couple of days I felt more alert, but after that, daytime sleepiness is back. Doctor also suggested I take 20 minute daily scheduled naps. Yea right! I lay down for these "naps" fall immediately to sleep, set 3 alarms unknowingly hitting snooze between each alarm and 1-2 hours later waking up confused as to what time it is, and just out of sorts. Not to mention I do not feel anymore rested. Anyone have any suggestions on what works for them? Also, I was somewhat relieved with the diagnosis to be honest. I always felt like something was wrong with me! And its embarrassing the random, sometimes inappropriate places I fall asleep.
Not to mention the severe sleep paralysis I have getting up. Its almost like my body shuts completely down and I cannot move. I tell myself to just get up, and I struggle, like its actually painful for me to move! Does anyone experience this?? It bothers me cause I do not have a lazy bone in my body, but it makes me feel so lazy, but I cannot help it! 3-4 times a month Im texting my boss with some excuse why I am going to be late to work, but I physically cannot get up! For years, Ive laughed along with friends who joke about my strange sleep habits, or take pictures of me passed out and send them to me. I laugh, but honestly is is extremely hurtful, cause I cannot control it. And dont feel like anyone will understand! An ex boyfriend would get so annoyed with me when one of my many alarms would go off and I would sleep right through them, waking him up, but he would think I was purposely not getting up. he would say put the alarm on the other side of the room. or why is the time set 30 minutes later then the real time? For me, I am so out of it when I awake that I think I am tricking myself with what time it actually is, or my alarms go off soo many times before I even ackowledge them! I won't bore you with anymore stories, I already need a nap.. haha however, any suggestions or similar stories would really be appreciated. Thank you in advance!
Recently Diagnosed. Help : /
Started by
out cold
, Jul 09 2012 09:54 PM
4 replies to this topic
#2
SleepyDays
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Posted 11 July 2012 - 09:02 PM
Hi There,
I'm deaf in one ear (I always sleep on my good ear side) and I found that I often slept through my alarm.
So I bought a vibrating alarm clock. The vibration always wakes me up.
This is the one I have:
http://www.amazon.co...r/dp/B003I7FIUO
You clip it to your pillow and it vibrates your pillow and bed to wake you up.
It always surprises me when it goes off...and it's hard to turn it off....so it forces me to wake up just to stop the vibrating.
I wonder if it would also work to snap you out of the sleep paralysis? I don't get sleep paralysis very often, so I can't comment on it for that purpose.
But it might be worth a try!
I'm deaf in one ear (I always sleep on my good ear side) and I found that I often slept through my alarm.
So I bought a vibrating alarm clock. The vibration always wakes me up.
This is the one I have:
http://www.amazon.co...r/dp/B003I7FIUO
You clip it to your pillow and it vibrates your pillow and bed to wake you up.
It always surprises me when it goes off...and it's hard to turn it off....so it forces me to wake up just to stop the vibrating.
I wonder if it would also work to snap you out of the sleep paralysis? I don't get sleep paralysis very often, so I can't comment on it for that purpose.
But it might be worth a try!
#3
sleepywriter
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Posted 14 July 2012 - 09:11 PM
Oh, man. Been there, done that. Sleep paralysis during naps used to be a common thing for me, especially when I did not have a set schedule. Naps are funny things that have to be timed just right in order to be able to get the most benefit from them. Start keeping a sleep journal and note the times that you feel most tired. Start trying to add a nap twenty minutes prior to that time. For example, if you start noticing you're sleepy at 10:30, try taking a nap at 10:10. Set the alarm for 20 minutes. At first, you may need to have two or three naps per day, but once you get into a routine, you may be able to cut that down to one or two. Also, make sure you are going to bed and waking up at the same time every day - even on weekends!
#4
exanimo
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Posted 20 July 2012 - 06:02 AM
It's a bittersweet situation. Knowing that something is actually wrong and that you have no control over it, and finding out it is something with no 'cure' and that you will have it for the rest of your life. :/
I was just recently diagnosed as well (about a month ago) but I've suspected Narcolepsy for a long time. My Doctor also prescribed me 150 mg of Nuvigil - and I've found that it helps somewhat. It helps me stay 'mentally' alert and takes that 'edge' of my EDS, but I can still easily fall asleep in non-stimulating situations. So IDK. I might ask him to up it, and if that doesn't work - stimulants. I've found that those are really helpful. I was prescribed one for weight loss a while back, but used it to intermittently to treat my EDS. And it actually gives me energy, and I don't fall asleep unless I want to.
How is your sleep schedule at night? Do you have a strict schedule? I know that it's hard to do, but I've found it really does improve my quality of sleep. And naps are definitely something that have to be scheduled to really be effective (for most people anyway). Currently, and in the past, I have taken naps when I need to. But, just like you, I find that I sleep for 2 hours instead of 30 minutes. But what I do notice, is that if I take the nap before I get to that 'I'm going to drop if I don't sleep now' point. Or when REM starts kicking in while you're awake (ie you start doing automatic behaviors or are drifting in and out). If I take the nap when I'm just beginning to feel some of that mental fatigue, instead of the severe, then I find I can actually take a 30 minute nap and wake up refreshed.
Hopefully this helps some. It's something to think about at least. Unfortunately, I don't have much insight in to the sleep paralysis, because I only have a mild case. It's odd - I'm not totally paralyzed. But when I wake up sometimes, I find it extremely hard to move. Like I'll try to lift my head but can only lift it for a few inches and only for a second. Or if I have to jump out of bed suddenly, my knees might buckle and I collapse. But luckily I do not experience this all of the time. But when I do, I just lay in bed, working on waking my mind up, and then moving on to my muscles and body. (Usually I start with my hands and arms and work my way to legs, torso and head.) And on the alarm note - I use my cell phone for my alarms. And so I can pick songs or ringtones to play for my alarm. I routinely alternate them, but I find that happy music works well. My favorite is the 'Lazy song'- it's not so slow that it puts me to sleep, but not so fast that I want to shut it off ASAP. Or something I would not normally listen to. One I use like that is 'Thunderstruck' because it's my brother's ringtone and he never calls me. Lol.
Good luck! I hope you're able to get your N under control - just try and remember that even though you have a diagnosis, it doesn't mean you are going to find that miracle treatment right away. It takes time to find what works for you!
I was just recently diagnosed as well (about a month ago) but I've suspected Narcolepsy for a long time. My Doctor also prescribed me 150 mg of Nuvigil - and I've found that it helps somewhat. It helps me stay 'mentally' alert and takes that 'edge' of my EDS, but I can still easily fall asleep in non-stimulating situations. So IDK. I might ask him to up it, and if that doesn't work - stimulants. I've found that those are really helpful. I was prescribed one for weight loss a while back, but used it to intermittently to treat my EDS. And it actually gives me energy, and I don't fall asleep unless I want to.
How is your sleep schedule at night? Do you have a strict schedule? I know that it's hard to do, but I've found it really does improve my quality of sleep. And naps are definitely something that have to be scheduled to really be effective (for most people anyway). Currently, and in the past, I have taken naps when I need to. But, just like you, I find that I sleep for 2 hours instead of 30 minutes. But what I do notice, is that if I take the nap before I get to that 'I'm going to drop if I don't sleep now' point. Or when REM starts kicking in while you're awake (ie you start doing automatic behaviors or are drifting in and out). If I take the nap when I'm just beginning to feel some of that mental fatigue, instead of the severe, then I find I can actually take a 30 minute nap and wake up refreshed.
Hopefully this helps some. It's something to think about at least. Unfortunately, I don't have much insight in to the sleep paralysis, because I only have a mild case. It's odd - I'm not totally paralyzed. But when I wake up sometimes, I find it extremely hard to move. Like I'll try to lift my head but can only lift it for a few inches and only for a second. Or if I have to jump out of bed suddenly, my knees might buckle and I collapse. But luckily I do not experience this all of the time. But when I do, I just lay in bed, working on waking my mind up, and then moving on to my muscles and body. (Usually I start with my hands and arms and work my way to legs, torso and head.) And on the alarm note - I use my cell phone for my alarms. And so I can pick songs or ringtones to play for my alarm. I routinely alternate them, but I find that happy music works well. My favorite is the 'Lazy song'- it's not so slow that it puts me to sleep, but not so fast that I want to shut it off ASAP. Or something I would not normally listen to. One I use like that is 'Thunderstruck' because it's my brother's ringtone and he never calls me. Lol.
Good luck! I hope you're able to get your N under control - just try and remember that even though you have a diagnosis, it doesn't mean you are going to find that miracle treatment right away. It takes time to find what works for you!
#5
Lang1725
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Posted 13 August 2012 - 01:09 PM
I can't offer advice because I'm newly diagnosed myself, but I can tell you that I have the exact same problems. If you can figure out a way to wake up (or live with someone who can help), I've found that if I wake up about 2 hours before I'm actually supposed to get up, take the Nuvigil (which I keep by my bedside) and then go back to sleep, I have an easier time getting up. One day I actually got out of bed about 15 minutes earlier than I had to, which has pretty much never happened in my entire life. LOL My SP is not very bad though. In fact, I have REM Sleep Behavior Disorder (I act out my dreams), so I'm actually not paralyzed when I should be.
I have panic disorder and I had a problem with the Nuvigil causing anxiety, so my doctor suggested taking half the dose in the morning, and the other dose around lunchtime. I haven't tried this yet because I have a sleep study scheduled for this Wednesday and I wanted to stop taking everything beforehand so that I can get a really accurate diagnosis. But after the study, I'm going to try the split doses and hope that will help with my afternoon fatigue.
What I really would like is something that will improve my sleep. Narcolepsy is a new concept for me, but it seems that if my actual sleep quality could be improved, then all of the daytime symptoms would improve as well. My theory is that I'm in REM sleep WAY too much. The sleep study will either confirm that or rule that out. If I am, then it makes sense that an aid that will help me spend more time in NREM sleep would probably be very helpful. I've read that Xyrem can do that, but I haven't tried it yet.
As someone with anxiety, I'm not a fan of stimulants. I consume very little caffeine and can't touch anything like an energy drink or a 5-hour energy. So I'd like to work with my doctor to focus on the sleep aspect. I'll let you know if I come up with anything that helps.
Oh...and I'm with you on napping. I can't see myself ever being able to nap for 20-30 minutes. Once I give in and let myself sleep, there is no waking me for hours. I used to tell my boyfriend, "I'm going to lay down for a little while" and he'd always say, "Goodnight" because no matter how hard I tried, my naps always turned into bedtime. Even if it was 5pm. I'd sleep until the next morning (and still have trouble waking up).
I have panic disorder and I had a problem with the Nuvigil causing anxiety, so my doctor suggested taking half the dose in the morning, and the other dose around lunchtime. I haven't tried this yet because I have a sleep study scheduled for this Wednesday and I wanted to stop taking everything beforehand so that I can get a really accurate diagnosis. But after the study, I'm going to try the split doses and hope that will help with my afternoon fatigue.
What I really would like is something that will improve my sleep. Narcolepsy is a new concept for me, but it seems that if my actual sleep quality could be improved, then all of the daytime symptoms would improve as well. My theory is that I'm in REM sleep WAY too much. The sleep study will either confirm that or rule that out. If I am, then it makes sense that an aid that will help me spend more time in NREM sleep would probably be very helpful. I've read that Xyrem can do that, but I haven't tried it yet.
As someone with anxiety, I'm not a fan of stimulants. I consume very little caffeine and can't touch anything like an energy drink or a 5-hour energy. So I'd like to work with my doctor to focus on the sleep aspect. I'll let you know if I come up with anything that helps.
Oh...and I'm with you on napping. I can't see myself ever being able to nap for 20-30 minutes. Once I give in and let myself sleep, there is no waking me for hours. I used to tell my boyfriend, "I'm going to lay down for a little while" and he'd always say, "Goodnight" because no matter how hard I tried, my naps always turned into bedtime. Even if it was 5pm. I'd sleep until the next morning (and still have trouble waking up).
