Coping with daytime sleepiness

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masterjen

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Daytime sleepiness is a worse problem for me since one of my medications was recently increased, although it doesn't happen every day. My methods of dealing with sleepiness before the increase were the typical get up and move, walk outside, cool water on my face, etc. but now they aren't enough. The time of sleepiness is about the same, which tells me it is related to the medication. It's the type of sleepiness which hits suddenly and hard, and if I don't lie down I'm going to fall down. After a 30-60 min nap I am still very groggy.
I can tolerate a large cup of tea (regular, not decaf.) with no effect on seizure activity so now instead of having tea in the AM I have a cup of tea after a nap (when I've needed to nap). I then am much more awake, and then get moving and I am fine until bedtime. My neurologist has no concerns with what I am doing, as we're both suspecting/hoping that the increased degree of sleepiness is temporary.

I'm curious to know how others here deal with strong daytime sleepiness that is not constant but relatively short (ie. until the "hit" of the current medication dose has lessened). Right now I am not working (which is why I chose now for the medication increase), but how do you deal with relatively short duration sleepiness like I have (very strong, hits hard) on the job? For those who are working, do you personally call sleepiness like this an intolerable side effect even if the medication is otherwise making a difference in seizure activity?
Thanks in advance for your input!
 
OMG I hate this but for me exercise and/or dancing helps (that and of course eating healthy, drinking plenty of water, and getting plenty of sleep)...it's important to get the blood flowing and the sweat going...but most importantly to get that body/mind connection growing! Consistency is key ;)


Let the spirit be your inspiration...to motivation :)
 
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OMG I hate this but for me exercise and/or dancing helps (that and of course eating healthy, drinking plenty of water, and getting plenty of sleep)...it's important to get the blood flowing and the sweat going...but most importantly to get that body/mind connection growing! Consistency is key ;)

I completely agree MrE. I am very physically active, and almost always feel better after I have been able to "sweat it out"! I also eat a healthy diet about 95% of the time (gotta have my Sunday pancakes :) ), and this also makes a big difference, as does staying hydrated.
 
or you will end up like me and up all night, and and sleeping from 7am to 2pm normally, but it is quiet
 
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What does it matter what time you sleep...as long as you get enough rest right???


btw C0urt we have the same sleep schedule lol
 
masterjen --

Any chance you can take your medication in smaller/more frequent increments? That might help minimize the sleepiness side effect.

You might also try having the cup of tea before your sleepiness attack is due, sort of prophylactically. Caffeine (esp. the caffeine in tea) can sometimes have a slow "loading curve", so if you time it right, it might help with dispelling the post-nap groggies.
 
masterjen --

Any chance you can take your medication in smaller/more frequent increments? That might help minimize the sleepiness side effect.

You might also try having the cup of tea before your sleepiness attack is due, sort of prophylactically. Caffeine (esp. the caffeine in tea) can sometimes have a slow "loading curve", so if you time it right, it might help with dispelling the post-nap groggies.

Hi, Nakamova;
Thanks for the information about tea. I didn't know any of that before.

As for taking the medication in smaller and more frequent increments, with Fycompa it is not possible as it is a once a day pill taken at night. This is the only one that has been increased recently, although the others are known to cause sleepiness as well. These others I'm on were changed from twice a day to 3 times per day about 6 months ago, but now that you mention it I see no reason why I cannot split one of those doses into two . . . thanks for the idea!
 
Good luck! I hope you can shake the sleepiness off.
 
masterjen --

Any chance you can take your medication in smaller/more frequent increments? That might help minimize the sleepiness side effect.

You might also try having the cup of tea before your sleepiness attack is due, sort of prophylactically. Caffeine (esp. the caffeine in tea) can sometimes have a slow "loading curve", so if you time it right, it might help with dispelling the post-nap groggies.

This is so true about tea. For YEARS I've taken 200mg of phenobarbital a day. My husband was the one who suggested I take it all at night so I'm not under it's groggy effect in the day. I was ecstatic when my neurologist said it was okay to do this.

But I was an iced tea drinker for many decades, and it's true, I would have my first glass in the morning, but it would take a while before it would kick in.

Then, when my daughter was in preschool, someone introduced me to coffee! Now there's a caffeine that kicks in right away :) I started having a few cups in the morning which helped me to get my daughter to school safely and on time.

This has remained my rhythm for over a decade now: coffee in the morning, then water, then iced tea in the afternoon and evening.

I'm hoping it won't be necessary at all if we can get me off of the phenobarb!
 
Then, when my daughter was in preschool, someone introduced me to coffee! Now there's a caffeine that kicks in right away :) I started having a few cups in the morning which helped me to get my daughter to school safely and on time.

I have heard coffee is better in this respect, but I have yet to tolerate the taste lol.
 
I have heard coffee is better in this respect, but I have yet to tolerate the taste lol.

I use just a wee bit of sugar (enhances subtle flavors) and a good bit of whole milk - love the milk with the cream on top! My family is kind and will leave the top of it for me - mmmmmmm! Delish!
 
Masterjen,

If coffee is not your thing there is something called Crio Bru which brews up like coffee but is made from ground up cocoa nibs.

It does not have caffeine but it does have theobromine which is chemically related but not identical. Theobromine has the same effect Nak was describing with tea, the slower loading curve. Also it doesn't have the negative side effects such as diuretic and jitteriness.

Not only that, it tastes freaking yummy.
 
I agree! I wanted to say that my sleepiness comes in spurts...but i could take a nap every afternoon regardless if i was able to! Plenty of rest is part of our responsibility having E...and only works to our benifit...i also tjink that if u can get into a healthy sleep routine by goin to bed same time everynight and up at the same time that helps....sorry if im not much help...i also feel that if yiu are home all day everyday...u are more apt to want to sleep more durimg the day either out of boredom. ..and no motivation if u dont have some thing that keeps u obligated daily...just my past experiences...
 
I agree! I wanted to say that my sleepiness comes in spurts...but i could take a nap every afternoon regardless if i was able to! Plenty of rest is part of our responsibility having E...and only works to our benifit...i also tjink that if u can get into a healthy sleep routine by goin to bed same time everynight and up at the same time that helps....sorry if im not much help...i also feel that if yiu are home all day everyday...u are more apt to want to sleep more durimg the day either out of boredom. ..and no motivation if u dont have some thing that keeps u obligated daily...just my past experiences...

Wish I could say I do have a terrible sleep routine that needs correcting lol. Then I would have an easy solution to the sleepiness. No, I learned the hard way just after my seizures started that I need a good sleep routine.
And boredom - no problem here either, fortunately (or unfortunately, depending on how you look at!). I am on holiday from work for a month (what can I say, seniority at work has its benefits :) ), so keeping busy catching up on a few household tasks that have been neglected, hanging out with some friends, plus I go to the gym for an hour daily and walk for 1-2 hours every day.
 
Masterjen,

If coffee is not your thing there is something called Crio Bru which brews up like coffee but is made from ground up cocoa nibs.

It does not have caffeine but it does have theobromine which is chemically related but not identical. Theobromine has the same effect Nak was describing with tea, the slower loading curve. Also it doesn't have the negative side effects such as diuretic and jitteriness.

Not only that, it tastes freaking yummy.

Many thanks for this! I love chocolate/cocoa. Hopefully this product is available in my part of the world.
 
I suffer from daytime sleepiness and I exercise in the morning and late afternoon to ensure I'm tired at night. Also drink a morning smoothie with about 1/4 of a pre-workout serving.
 
I suffer from daytime sleepiness and I exercise in the morning and late afternoon to ensure I'm tired at night. Also drink a morning smoothie with about 1/4 of a pre-workout serving.
For me afternoons work better for exercise. If I work out in the am, then I seriously need a nap.
Totally agree though that getting good exercise is crucial to getting good sleep.
 
Masterjen...its great to hear you are active durimg the day....at least you are being proactive and doing what u can to find that good balance of rest / excercise...etc....i wish i had more to offer...but i do hope this this is just a phase...i think we all have our ups and downs with fatigue...going thru spurts of energetic days....then just flat on wiped out....hope you feel better soon! And MrE.....nothin but smiles! :)
 
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