Had another (grand mal) seizure today. In my sleep as always, so I'm
never 100% certain that it really was a seizure or just me being
exhausted. But this is twice in one month and I'm getting a little
worried. I usually only have 4-5 a year.
My sleep patterns are completely off the scale, sleeping during the day
one week (as I did today) and during the night the next. It's really
hard to get into a 'normal' rhythm that the doctors are preaching so
hard when you don't work and don't go to school. Sure, I could 'just go
to bed', but sleeping.. I lay awake for hours sometimes, even if I do go
to bed early. So what's the point?
Does anyone have any suggestions on how to normalise sleep patterns?
-Charlie

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> Had another (grand mal) seizure today. In my sleep as always, so I'm
> never 100% certain that it really was a seizure or just me being
[quoted text clipped - 10 lines]
>
> -Charlie
I'm real interested in sleep issues because my sleep patterns are
totally wacky and have been for years. My neurologist and my regular
doctor are aware of this. Right now, the wacky sleep schedule works out
for my lifestyle, but I know I'm going to have to conform to "normal"
hours in the near future due to pending changes in our household.
The only thing that really worked to normalize my sleep was going on
Celexa. For the first three months my sleep returned to normal. Then
one night I needed to wait up for some family members who were coming to
visit (so I could let them in the house). It was a real struggle to
stay up until two or three in the morning. From that point on, my sleep
reverted back to its abnormal pattern.
The only things that I've noticed that really seem to play a role in how
much sleep and when I sleep (day versus night) is the amount of light
and physical activity. There is a big difference in my alertness and
sleep patterns depending on the time of year (definitely improved when
there is more natural light). Physical exertion seems to keep me awake
and alert during the day (instead of needing a nap) so I sleep longer
during the night.
My caffeine intake has always been low, and sometimes I will go for
weeks without drinking coffee, sodas with caffeine, or anything else
that could contribute to this problem.
One thing that bugs the heck out of me is people waking me from my
sleep, or preventing me from going to sleep at a normal hour, or waking
me very early in the morning. I know that has had a big impact on my
sleep schedule over the years. It probably also had a big impact on my
seizures (before I knew I had epilepsy) because I probably wasn't
getting enough total sleep back then.
My thoughts on this wacky schedule are to take advantage of it. If I
can't sleep, I'm going to work or do something, anything. I can't see
wasting the time.
Sorry, I don't have any solutions. I'm still trying to work through
this myself.
Barb
ComradeCharlie - 24 Apr 2005 19:57 GMT
>> Had another (grand mal) seizure today. In my sleep as always, so I'm
>> never 100% certain that it really was a seizure or just me being
[quoted text clipped - 51 lines]
>
> Barb
Hi Barb,
sorry to hear that you have similar problems. I have asked my doctor
about sleeping pills, but she didn't think it was a good idea since
apparently you become very addicted to them.
The problem for me is that in August I'm going to start a program to
test my work abilities and have to be up at o'dark thirty to be there at
seven in the morning. I'd like to get somewhere near a normal pattern
before then.
On the other hand, I know it probably won't do me any good. When I was
still studying I had trouble getting up, and after getting home I was
devastated and slept for hours to 'catch up'.
At the moment I need 10+ hours of sleep to feel at least somewhat
refreshed and I don't see myself going to bed at 9pm. And that's really
what worries me. When this thing rolls around I have no choice but to be
at my workplace at 7 (they'll deduct my social security if I don't show
up) I worry that I'll not get enough sleep. And that I'll have more
seizures as a result.
Definitely not looking forward to August even if it will get me out of
the house every day.
- Charlie

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Julie - 25 Apr 2005 18:06 GMT
Hi Charlie, have you thought about trying to slowly adjust your schedule. Set
your alarm to get up half an hour early for several days and go to bed half an
hour early, then adjust it half an hour more etc. Just a thought.
I know when I have to work outside of my home it is difficult to go to sleep
because in the back of my mind I'm thinking I have to get up early, and it
takes a while to get to sleep. But once I'm on that schedule for several days
then I'm tired enough that I can go to sleep at an appropriate time and wake
up (my husband goes to work before me and gives me a call to make sure the
alarm clock woke me up) ;-)
Take care,
Julie
CyberCafe - 26 Apr 2005 18:29 GMT
>>> Had another (grand mal) seizure today. In my sleep as always, so I'm
>>> never 100% certain that it really was a seizure or just me being
[quoted text clipped - 79 lines]
>
> - Charlie
Ask your doctor about light therapy, which is used for sleep disorders.
There's also a bunch of information via google. I used the keywords
"sleep light therapy.' More good resources were found using the keywords
"shift workers sleep."
White noise is interesting. Some companies actually sell devices
specifically for creating white noise, but you might be able to use an
electric fan as a substitute. Every time I've been in the hospital, they
run the fans or exhaust system or whatever that noise is around bedtime.
I don't know how the staff stays awake, but it sure zonks out the
patients. There's a free audio sample of white noise at:
http://www.sleeplullabies.com/order.html. I listened to the fan sample
on that site, and it's exactly the same sound I heard in the hospital
except the hospital's sound was smoother than the sample on the baby site.
Barb