Hi all,
I've been on Epilemma (Depakote) for a bit over a month now to control
absence seizures which occur during the day and at night.
I called my neurologist on Thursday and asked about using sedatives to try
to improve my sleep further, as the tiredness I feel (due to nighttimes
seizures, we presume) has not yet resolved.
He advised me not to use tranquilisers, but to increased Epilim to 800 mg as
of the next morning, which I did.
That night (friday night / saturday morning) I am told I started shaking in
my sleep, enough for my boyfriend to notice it. I shook three times, each
for about 1-2 seconds duration, with about a 5 second gap between shakes.
He thought I was shivering because I was cold, but he touched my arm and I
felt warm.
I slept through the whole event and felt normal (for me) when I woke up.
Could this have been a reaction to the Epilim increase? Some tiny grand mal
seizure?
Do I wait and see if it happens again, or do I call my neurologist monday
and report it? I really don't feel any different.
Thanks for your advice,
Kylie
Marco - 20 Jun 2004 06:38 GMT
> Hi all,
>
[quoted text clipped - 26 lines]
>
> Kylie
Hello Kylie,
I may be able to answer some questions for you as I used to have absence
type of epilepsy with repitive movements of limbs when I was 10 years old
(they prescribed me Depakote at that time and within a couple of years I was
seizure free without meds) and now since February this year I have been
having tonic-clonic type of seizures with all classic symptoms (they
prescribed me Depakote in April which means I have been taking Depakote for
almost 8 weeks now). Some stats about me: I take 1000 mg per day, almost 30
years old, 1.92m in length and 92 KG in weight.
There is no absolute contra-indication to taking a sedative if you have
epilepsy, but you need to check with your doctor before taking these pills.
People with breathing problems at night should not take sedatives. Insomnia
is very difficult to cure and people develop a tolerance to sedative
hypnotic drugs after taking them for a short while. There is no drug that
you can take on a long-term basis that will put you to sleep and let you
feel quite rested during the day. That is why a behavioural approach is
recommended. More information:
http://www.epilepsytoronto.org/learning/topic/sleep/
With Depakote and with any other med to prevent epileptic seizures, it is
well known that it can cause liver problems. That is why one usually starts
at a low dose which can be increased later on. If you notice this specific
med does not work, the dose needs to increased until the so called
therapeutic level has been reached. If you still have issues, then another
med should be described.
Valproate acid (Depakote) should not increase the seizures but should
prevent them as they should have a relaxing effect on the neurotransmitters
in the brain hence it should prevent the number of short circuits in the
brain. Furthermore, every body is different so may be your body reacts
differently. That may of course be possible.
One of those things your doctor won't tell you: do not drink milk as it
metabolizes the drug in your liver which means specifically, the whole dose
is not getting into the blood stream. It caused me four or six weeks to find
out and right now, I do not have any issues (issues in my case: short
circuits in the brain when I am walking in my lunch break). Some people have
problems metabolizing the following:
1. casein (milk protein)
2. gluten (protein found in wheat and several other grains).
Eliminating one or both proteins from the diet may result in symptoms
improvements. There may be some others as well that needs to be elimated
from the diet to get the drug into the system as soon as possible without
being "wasted".
Let me know if you have further questions.

Signature
Take care.
Bye,
Marco
gaross - 20 Jun 2004 16:11 GMT
Don't change the medication level you use until you've talked to your
Doctor. Several of these AEDs take days to a week to get to stable blood
levels in your body. If you've just altered any doses in last 1-2 weeks,
the Dr. should be monitoring progress and suggest if your symptoms are
within range or not.
Note-> The Article posted earlier (about Sleep wrt. Epilepsy) is from
the Epilepsy Assocation of Toronto. That's a Local Ep. Association
CHAPTER. While they have Doctors and Neurologists supervise what they
Publish or put onto their Website, it's run by Volunteers, and should not be
Taken as the "Bible", with respect to how you Increase or Decrease your
Treatment (especially from the other side of the world), without speaking
to your Doctor.
Their intent is to provide information and assistance to people living
with Epilepsy (especially in Eastern Canada and N.E. U.S.) and who use
their computers at their Local Offices here. I hadn't read their site for
4-5 months, and didn't realize they had even added as much as they now have
on that site. (I guess I'll have to go back and see what my Local Org. is
putting online!! :-< )
P.S. If you didn't get a printout from your Pharmacist with the
medication, how to use it, side effects to watch for, etc. see if there's
anything on the Ep. Foundation of America site that is new to you. (That's
a U.S. site unless someone (Pablo? ) knows if the Australia and New Zealand
site has a Medications Glossary-- so you'd probably search for Depakote or
Epilem ?? for what you want. I think one of the sites includes a Photo of
what the pills look like as well as the write-up, so you can make sure it's
the Same pill and colour (dose) that you are using. )
The U.S. EFA site is at http://efa.org . G./
> Hi all,
>
[quoted text clipped - 24 lines]
>
> Kylie
gaross - 20 Jun 2004 16:13 GMT
I should have added you can Talk to your Pharmacist (Chemist) and often
get questions answered on any Side Effects or Questions about a Pill quicker
than contacting your Doctor, since the Pharmacist has most of the
Manufacturer's Scripts and information in more detail than many Doctors do.
G./
> Hi all,
> I've been on Epilemma (Depakote) for a bit over a month now to control
[quoted text clipped - 20 lines]
> Thanks for your advice,
> Kylie
CyberCafe - 21 Jun 2004 01:31 GMT
> Hi all,
>
[quoted text clipped - 25 lines]
>
> Kylie
Kylie, it kind of sounds like you are new to this epilepsy game. With some of
these epilepsy medications, the doctor is not going to start you on a high
dose. They start you low and then use blood tests plus your decription of how
you feel to determine whether they need to up the dose or not, split the dose,
or add another drug. If they do increase your dose, you still have to wait
until your blood level amount of the drug increases, which could take several
days or longer. Also some medications are pretty touchy as far as missing a
dose, being late with a dose, and so on because your blood level will fluctuate
too much. Sometimes the doses are split to even out the blood level and give
better overall control.
I can't give an opinion on your shivering episode, but it would be a good idea
to keep track of things you or other people notice becaue this kind of diary/log
might help you and your doctor regarding treatment.
As far as sleep aids, personally I would not do it, at least not at this point.
First, if you are having nocturnal seizures, a sleep aid isn't going to stop
that. Then is the sleep aid going to mask things enough that you can't be sure
if the meds and dose are effective (I don't know but am just wondering)? I've
asked for something myself to help me sleep, but my doctors won't do it in part
because they say those drugs are not intended for long-term use.
By the way, has the Depakote helped at all so far?
Barb
little mouse - 21 Jun 2004 13:25 GMT
> Kylie, it kind of sounds like you are new to this epilepsy game. With some of
> these epilepsy medications, the doctor is not going to start you on a high
[quoted text clipped - 21 lines]
>
> Barb
I'm very new to the epilepsy game, I've only been playing for a month or so
now (since official diagnosis).
I don't disagree that the doctor was right in telling me not to use
sedatives, at least until I know if the medication is working, and because
they could mask other problems. Also the addiction risk is always there,
but in the short term that's not likely to be a problem. I'm just
desperately tired almost every day and I've run out of sick leave at work,
so I'm looking for any alternatives.
I'm keeping a diary when I remember or when something important is noticed,
and will get my first blood tests next week. Hopefully after that I'll have
some idea if the meds are working and what to do next.
So far, the depakote / epilim is working a bit, with only minimal side
effects. My daytime tiredness is close to gone, but my lethargy when waking
up and trying to get moving, and in the first hour after waking, is not
improved at all.
I guess I just wait and see what happens when the dose settles down and
after I've seen the neurologist next. No point thinking too many steps
ahead of myself.
Kylie
David Ruether - 21 Jun 2004 22:24 GMT
> I'm very new to the epilepsy game, I've only been playing for a month or so
> now (since official diagnosis).
[quoted text clipped - 20 lines]
>
> Kylie
There is always the possibility of restless legs syndrome
(RLS), and periodic limb movement disorder (PLMD),
along with obstructive sleep apnea (OSA) for causing
sleep problems (OSA is the "biggy" that causes LOTS
of problems, including possible brain damage in addition
to heart problems). More at alt.support.sleep-disorder...
--DR
Pablo - 21 Jun 2004 11:38 GMT
g'day kylie,
I was on epilim (sodium valproate) for about seventeen years to control
absence and complex partial seizures. i found that it worked reasonably
well. when i was taking it i never seemed to have any reactions to increases
in dosage right up to 2400mg per day. i did find that when i got to the
higher dosages that i was going around in a daze so i had my dosage adjusted
down to 1700mg. i found when changing on to my new medications that it took
several weeks for my body to adjust to the effects of the medicine so i'd be
inclined to give it a little while to take effect if i were you.
most medicines should come with a facts sheet which should give you most of
the relevant info you need but if not i have found that www.rxlist.com/ is
a good site to answer just about any question you should have.
pablo
> Hi all,
>
[quoted text clipped - 25 lines]
>
> Kylie