8 replies to this topic

[LizHendrson]

Hi Everyone - I'm Liz...new here, newly dx'd with N w/o C (though seems I often experience some sort of mild cataplexy/sleep paralysis tiggered by physical/mental exhaustion..??) Struggled 14 yrs w/o a dx, so naturally my physical state is quite declined at this point, and now trying everything I can to regain every ounce of strength that can possibly be recovered!

Anyway, to my question --
In my current attempts to develop & maintain a daily wake-up routine (using Ann Austin's Tips for Wakefulness as a guide) I've run into this problem: If for whatever reason I don't sleep well enough the night before ("well enough" being relative, of course) the EDS can be soooo overpowering no matter what I do (take AM meds right away, sit outside in the cold fall air, drink a hot cup of tea, jog in one spot, dose myself with as much sunlight as is available, etc).

Sometimes I just can't wake myself. What should I do? Is it more beneficial to fight as hard as I can to maintain wakefulness for the sake of "training the REM"? Or would it be better to just give in and let myself sleep?

Do you have any other "Tips for Wakefulness?" A slap in the face, maybe? A freezing cold shower? What do you do when nothing else seems to wake you up? Or if its better to just sleep a little longer - for how long?

Any help is greatly appreciated!

[Hank]

Hi Everyone - I'm Liz...new here, newly dx'd with N w/o C (though seems I often experience some sort of mild cataplexy/sleep paralysis tiggered by physical/mental exhaustion..??) Struggled 14 yrs w/o a dx, so naturally my physical state is quite declined at this point, and now trying everything I can to regain every ounce of strength that can possibly be recovered!

Anyway, to my question --
In my current attempts to develop & maintain a daily wake-up routine (using Ann Austin's Tips for Wakefulness as a guide) I've run into this problem: If for whatever reason I don't sleep well enough the night before ("well enough" being relative, of course) the EDS can be soooo overpowering no matter what I do (take AM meds right away, sit outside in the cold fall air, drink a hot cup of tea, jog in one spot, dose myself with as much sunlight as is available, etc).

Sometimes I just can't wake myself. What should I do? Is it more beneficial to fight as hard as I can to maintain wakefulness for the sake of "training the REM"? Or would it be better to just give in and let myself sleep?

Do you have any other "Tips for Wakefulness?" A slap in the face, maybe? A freezing cold shower? What do you do when nothing else seems to wake you up? Or if its better to just sleep a little longer - for how long?

Any help is greatly appreciated!

Liz- I am relatively new as well and a work in progress. I found those tips for wakefulness helpful as well. I have been off caffeine for over 6 months. It was my go-to stimulant for morning time, but the crash mid day was rough. I feel more predictably even without it- but I do feel foggy in the mornings. I avoid drinking anything cold since that seems to make me sleepy. I drink lots of water without ice. I keep the AC on my feet when I am driving because warm feet make me feel sleepy. Exercise helps me a lot- at the end of the work day works best for me. I have taken a break from exercise because I lost a lot of weight and I am trying to put some back on before resuming anything intense. I do some sit-ups first thing in the morning which gets 02 to my brain and works well. I have always avoided naps for 2 reasons: 1- they frustrate me because can I only sleep when I don't want to during the day 2- naps seem to make it harder for me to sleep at night. Regarding sunlight- I also try to get regular sun. I was surprised when my regular doc said I was very low on D- and this was after a 2 week vacation in the sun. Apparently low vitamin D levels are common in N and other autoimmune diseases. I take prescription D supplements. Lean protein during the day helps me also, with no sugar, caffeine and little or no carbs. I hope some of this helps- it all seems to be trial and error until we find what works for us.

[Megssosleepy]

Liz- I am relatively new as well and a work in progress. I found those tips for wakefulness helpful as well. I have been off caffeine for over 6 months. It was my go-to stimulant for morning time, but the crash mid day was rough. I feel more predictably even without it- but I do feel foggy in the mornings. I avoid drinking anything cold since that seems to make me sleepy. I drink lots of water without ice. I keep the AC on my feet when I am driving because warm feet make me feel sleepy. Exercise helps me a lot- at the end of the work day works best for me. I have taken a break from exercise because I lost a lot of weight and I am trying to put some back on before resuming anything intense. I do some sit-ups first thing in the morning which gets 02 to my brain and works well. I have always avoided naps for 2 reasons: 1- they frustrate me because can I only sleep when I don't want to during the day 2- naps seem to make it harder for me to sleep at night. Regarding sunlight- I also try to get regular sun. I was surprised when my regular doc said I was very low on D- and this was after a 2 week vacation in the sun. Apparently low vitamin D levels are common in N and other autoimmune diseases. I take prescription D supplements. Lean protein during the day helps me also, with no sugar, caffeine and little or no carbs. I hope some of this helps- it all seems to be trial and error until we find what works for us.

NO CAFFEINE!!!! NOOO! I stick to just one in the am. when the crash comes I take my second dose of nasty stimulant. I have found that waking up after a night on Xyrem has been very easy but just to early!

[purpley]

Do you have any other "Tips for Wakefulness?" A slap in the face, maybe? A freezing cold shower? What do you do when nothing else seems to wake you up?

One of the things that works really well for me, which I discovered by accident, is a lightbox, which is usually used for winter depression. The light is so powerful (10,000 lux, the equivalent of a bright, sunny day) that it will wake up anyone, even with their eyes closed. You can put it on your bedside table with a timer, or do it the really effective way in case you're facing a different direction -- have your spouse hold it about a foot away from your face and flip the switch if you're not getting up (accompanied by an evil laugh, of course.) These are not tanning boxes, there's no UV light, and it's not harmful to your skin in any way -- they're just lightbulbs with mirrors behind them to concentrate the light. Can theoretically be harmful to your eyes if you sit and stare directly into them from a foot away for long periods of time, but you'd have to be a masochist to try that, they're painfully bright. After I get up, I just leave it on while I get dressed, look at it from time to time for a few seconds, and I'm ready to go.

Personally, I feel like I've had a cup of coffee afterwards, slightly revved -- but no caffeine crash later. These also regulate your circadian rhythm, really good to get rid of jet lag quickly by "forcing" your brain back into your regular time zone. Word of caution: If you have manic-depressive (bipolar) disorder, be careful and ask your psychiatrist about it, because on rare occasions, these lights can induce mania, just like antidepressants.

There are several places where you can get these, but I got mine from Northern Light Technologies: http://northernlighttechnologies.com/

[Megssosleepy]

One of the things that works really well for me, which I discovered by accident, is a lightbox, which is usually used for winter depression. The light is so powerful (10,000 lux, the equivalent of a bright, sunny day) that it will wake up anyone, even with their eyes closed. You can put it on your bedside table with a timer, or do it the really effective way in case you're facing a different direction -- have your spouse hold it about a foot away from your face and flip the switch if you're not getting up (accompanied by an evil laugh, of course.) These are not tanning boxes, there's no UV light, and it's not harmful to your skin in any way -- they're just lightbulbs with mirrors behind them to concentrate the light. Can theoretically be harmful to your eyes if you sit and stare directly into them from a foot away for long periods of time, but you'd have to be a masochist to try that, they're painfully bright. After I get up, I just leave it on while I get dressed, look at it from time to time for a few seconds, and I'm ready to go.

Personally, I feel like I've had a cup of coffee afterwards, slightly revved -- but no caffeine crash later. These also regulate your circadian rhythm, really good to get rid of jet lag quickly by "forcing" your brain back into your regular time zone. Word of caution: If you have manic-depressive (bipolar) disorder, be careful and ask your psychiatrist about it, because on rare occasions, these lights can induce mania, just like antidepressants.

There are several places where you can get these, but I got mine from Northern Light Technologies: http://northernlighttechnologies.com/

That is such a good suggestion! The winter months bring darker mornings I may need it!

[Fluffybunny5000]

Hi Everyone - I'm Liz...new here, newly dx'd with N w/o C (though seems I often experience some sort of mild cataplexy/sleep paralysis tiggered by physical/mental exhaustion..??) Struggled 14 yrs w/o a dx, so naturally my physical state is quite declined at this point, and now trying everything I can to regain every ounce of strength that can possibly be recovered!

Anyway, to my question --
In my current attempts to develop & maintain a daily wake-up routine (using Ann Austin's Tips for Wakefulness as a guide) I've run into this problem: If for whatever reason I don't sleep well enough the night before ("well enough" being relative, of course) the EDS can be soooo overpowering no matter what I do (take AM meds right away, sit outside in the cold fall air, drink a hot cup of tea, jog in one spot, dose myself with as much sunlight as is available, etc).

Sometimes I just can't wake myself. What should I do? Is it more beneficial to fight as hard as I can to maintain wakefulness for the sake of "training the REM"? Or would it be better to just give in and let myself sleep?

Do you have any other "Tips for Wakefulness?" A slap in the face, maybe? A freezing cold shower? What do you do when nothing else seems to wake you up? Or if its better to just sleep a little longer - for how long?

Any help is greatly appreciated!

Welcome to narcolepsy! It is a daily struggle for all of us and we all have our little tips and tricks.. I have excessive problems waking up on time and struggle with EDS quite a bit.. but I have found a few ways to manage it!

#1 Caffiene is NOT YOUR FRIEND! stay away from energy drinks and star bucks.. i drink soda all day.. it doesnt effect me but stay away from the caffiene boosters, because if you do drink it you will crash hard later and that crash is hard to ride out! You are 10x's more likely to have a sleep attack and it will be at the wrong time for sure!

#2 Schedule! make a schedule and stick to it.. go to bed the same time every day if you are working or not.. wake up same time every day.. NO SNOOZING!

#3 Wake-up buddies! THese are important.. they are the people who are your back up! Set your various alarms.. but this person is the one who is going to call you until you answer and make sure you are awake.. i would not have a job without my wake up buddy!

#4 Purchase an I-Phone as soon as possible.. there are MANY apps that can help you track your sleep patterns and even your sleep rhythems! and LOTS of alarms! you can download tunes and tones that are nearly impossible to sleep through.. I have "nightstand" app which you have to purchase but i can set up to however many alarms i want to and ther is only one way to turn it off.. I hve police sirens, air horns, cartman singing banana nan na, the exorcist woman screaming.. my roomie hates it but hey.. i got to pay my bills! also there are other alarm apps that make you do math in the morning to turn it off... so i highly recommend the iphone for any narcoleptic

#5 purchase the Sony audio docking station currently is not on sale at walmart for $88 which is less than what i paid for it.. this thing is tride and true! and you put batteries in it and it STILL WORKS so if the power goes off you still have it! you put your iphone on this thing and that alarm goes off.. the neighbors are going to be cussing you out.. I purchased it in march of this year and i havent had a problem since then! I jump out of bed scared off my ass and hit the ground running...

#6 Snoozing brings on REM attacks.. try not to snooze.. when you wake up stay up.. i'm sure your body wakes you up sometime during the day.. best thing for you to do is get up right then.. because if you go back to bed your more likely to oversleep. just get up and start your day and go to bed earlier if your tired that night... i noticed that a few months ago that snoozing brings sleep paralysis and sleep attacks more than not.

#7 Keep trying! dont give up.. there is a way for all of us.. if u have to attatch a cord to your toe do it.. always ask for help when you need it and keep your employer abrest of the situation... at first mine tried to fire me but then they realized what was going on i got an accomodation and now its not such a problem

I hope this helps...

[Megssosleepy]

So, I tried Hank's tip about the AC on your feet while driving. And that really helped. I have a hard time not dozing off while on my long trek to work in the am. I put my heated seats on so I wouldn't freeze and had flipflops on and cut the AC on my feet. I was amazed how well the combo worked! Now I do it any time I feel that "feeling"!

[purpley]

So, I tried Hank's tip about the AC on your feet while driving. And that really helped. I have a hard time not dozing off while on my long trek to work in the am. I put my heated seats on so I wouldn't freeze and had flipflops on and cut the AC on my feet. I was amazed how well the combo worked! Now I do it any time I feel that "feeling"!

I'm going to try this on my next long drive too, what a cool idea! (Cool, get it? Cool? Aw, never mind...)

[LizHendrson]

Thank you, everyone, for sharing your advice!!! Sorry for taking so long to reply...I really appreciate the feedback & looking forward to trying to implement some of these ideas & tips!