absences in adults

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little mouse - 27 May 2004 12:57 GMT

Hi all,

My diagnosis was confirmed yesterday - Generalised absences. Problem is I'm
24 years old, so according to what I read that's pretty rare.

EEG was very clear (I had 2 seizures during the half hour I was hooked up to
the machine) and my MRI was clear.

I've been prescribed Epilim (US brand name is Depakote I believe) at 400mg
to start off with.

I'm having problems finding any information on the net that is relevent to
someone my age, so I'd be very interested in hearing from anyone who
experiences absences or who could tell me where to find info about what
medications are effective in treating this condition, and what dosages are
required in adults to answer my endless questions and contain my curiosity.
Also what blood levels I will need to reach to control my absences so I can
drive again would be helpful.

Any help, or just a chat, is greatly appreciated.

-- Kylie
(remove NOSPAM from email addy to reply)

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Daz_n_Pat - 27 May 2004 13:30 GMT

> Hi all,
>
[quoted text clipped - 19 lines]
> -- Kylie
> (remove NOSPAM from email addy to reply)

Hi Kylie,

Just thought I would come on and say howdy and welcome to the group. (I
don't think I've seen you here before. Sorry if I'm mistaken).
I'm afraid I can't be of any use to you whatsoever. LOL. My seizures are
different to yours. But I'm also taking epilim....one thing we have in
common. I'm on 2000mg - along with about 700 other anti-epileptic drugs. :-)
I'm sure the doc won't put you on such a high dose of epilim though, since
I'm a 6'3" man weighing 100kgs and I'm assuming you're a little smaller than
me.
How are you going with the epilim? I've never found it to have any side
effects on me, but everyone reacts differently to meds.
I'm sure Dave will be along shortly with all the sites you need to visit to
get all the info you need. He's always a great help with references for info
like that. :-)

I'm guessing you are from Australia (from your accent). I'm from New
Zealand, but my wife is from Sydney. Met her on the internet three years ago
and went there to drag her back here and married her last November. Great
thing, the internet.

All the best to you.
Hope you can get on top of it. Good on you for being caring enough to stop
driving. I wasn't that bright. Took a bad accident to wake me up.

Cheers.
Darryl.

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little mouse - 27 May 2004 13:43 GMT

> Hi Kylie,

Hi Darryl, thanks for replying.

> Just thought I would come on and say howdy and welcome to the group. (I
> don't think I've seen you here before. Sorry if I'm mistaken).

You're right, I am new to the group.

> I'm afraid I can't be of any use to you whatsoever. LOL. My seizures are
> different to yours. But I'm also taking epilim....one thing we have in
[quoted text clipped - 3 lines]
> I'm a 6'3" man weighing 100kgs and I'm assuming you're a little smaller than
> me.

I'm approx 5ft tall so I doubt I'll need that much :) My neurologist is
looking at a final dose somewhere between the 400 mg I'm starting on and
1200 mg, depending on my tolerance.

> How are you going with the epilim? I've never found it to have any side
> effects on me, but everyone reacts differently to meds.

I only started taking it last night, so no real effects or side effects yet.
I'm expecting the standard lethargy and nausea that's common with most
medications, but hoping any lethargy from the meds will be less than what
I'm already experiencing. (I get seizures while I sleep and haven't had a
restful nights sleep in longer than I care to remember - that's the main way
I'll be able to tell if the Epilim actually works I think)

> I'm sure Dave will be along shortly with all the sites you need to visit to
> get all the info you need. He's always a great help with references for info
> like that. :-)

There's usually at least one helpful person like that on every group :)

> I'm guessing you are from Australia (from your accent). I'm from New
> Zealand, but my wife is from Sydney. Met her on the internet three years ago
> and went there to drag her back here and married her last November. Great
> thing, the internet.

Yep, I'm from country Victoria, a couple of hours from Melbourne.

> All the best to you.
> Hope you can get on top of it. Good on you for being caring enough to stop
> driving. I wasn't that bright. Took a bad accident to wake me up.

I had an accident last year, long before I even started to suspect my
tiredness was epilepsy. I hope the accident wasn't connected, but I'm not
sure. Luckily no other cars were involved and I wasn't hurt, but it did
shake me up enough to be careful now.

Thanks for the welcome :)

Kylie

> Cheers.
> Darryl.

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Daz_n_Pat - 27 May 2004 14:00 GMT

> > Hi Kylie,
>
[quoted text clipped - 56 lines]
>
> Kylie

I've been tired for 30 years now. Partly from seizures at night and partly
from meds.
It's a bugger, but you do get used to it and it just becomes normal for you.
I feel like any "normal" person during the day, enough energy, wide awake,
etc. It's only when I stop to think about it that I realise I actually am
tired. It's currently 1:00AM here and I don't feel particularly tired unless
I sit back and think about it.
It's made me realise just how over rated and counter-productive thinking
really is. ;-)
Sorry to hear about your accident. I'm glad no one was hurt.

Be good.
Darryl.

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David Ruether - 27 May 2004 15:56 GMT

[...]

> I'm approx 5ft tall so I doubt I'll need that much :) My neurologist is
> looking at a final dose somewhere between the 400 mg I'm starting on and
> 1200 mg, depending on my tolerance.

[...]

> I only started taking it last night, so no real effects or side effects yet.
> I'm expecting the standard lethargy and nausea that's common with most
> medications, but hoping any lethargy from the meds will be less than what
> I'm already experiencing. (I get seizures while I sleep and haven't had a
> restful nights sleep in longer than I care to remember - that's the main way
> I'll be able to tell if the Epilim actually works I think)

I started on Depakote (US name for Epilim[?]) almost amonth ago - so far,
only a bit of early nausea and a bit of depression for a couple of days, but
nothing serious or long-lasting so far (only at 500mg/day, though - I will
likely not go higher for a while, if at all). One thing that is WAY too often
overlooked as a source of problems (perhaps all of mine...), is obstructive
sleep apnea. While unlikely for you (especially if you remember dreaming),
and it is more likely for not-young, larger individuals, it is still a possibility
that is too rarely checked for (a simple/cheap overnight use of a recording
oximeter at home gives a 70%-accurate diagnosis of OSA and night
oxygen-starvation - a sleep-study tells more, like what sleep stages you
do/do-not reach). I did not feel tired, but I had severe OSA, which caused
serious heart (and I think, neurological) problems - and three heart specialists
missed it!
Good luck with controlling your seizures!

[...]
--
DR

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little mouse - 28 May 2004 13:51 GMT

> [...]
> > I'm approx 5ft tall so I doubt I'll need that much :) My neurologist is
[quoted text clipped - 26 lines]
> --
> DR

Actually, that's how my epilepsy was diagnosed. It was suggested my
tiredness might have been sleep apnoea and I requested to my GP that I be
sent for a sleep study at one of the larger hospitals in this state, where
my breathing was monitored during the night.
As part of that test a mini-EEG was done (only approx 4 electrodes) to
monitor what stage of sleep I was in. That mini EEG detected at least 5 (I
think) seizures during the 6 or so hours that I slept that night, and I was
referred for a full EEG and evaluation straight away. And so the whole saga
began....but at least I have some answers now.

Kylie

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David Ruether - 28 May 2004 17:47 GMT

> > "little mouse" <mousieNOSPAM@dcsi.net.au> wrote in message
> news:c94nmg$23d7$1@otis.netspace.net.au...

> > [...]
> > > I'm approx 5ft tall so I doubt I'll need that much :) My neurologist is
[quoted text clipped - 7 lines]
> > > restful nights sleep in longer than I care to remember - that's the main way
> > > I'll be able to tell if the Epilim actually works I think)

> > I started on Depakote (US name for Epilim[?]) almost amonth ago - so far,
> > only a bit of early nausea and a bit of depression for a couple of days, but
> > nothing serious or long-lasting so far (only at 500mg/day, though - I will
> > likely not go higher for a while, if at all).

[I forgot to mention serious balance problems...]

> > One thing that is WAY too often
> > overlooked as a source of problems (perhaps all of mine...), is obstructive
[quoted text clipped - 9 lines]
> > [...]
> > --DR

> Actually, that's how my epilepsy was diagnosed. It was suggested my
> tiredness might have been sleep apnoea and I requested to my GP that I be
[quoted text clipped - 6 lines]
> began....but at least I have some answers now.
> Kylie

Ah, you were "lucky" to find answers - and you are "back-way-'round"
from me. I did not have the tiredness symptom that might have led to an
earlier sleep study for sleep-apnea (with "severe" sleep-apnea diagnosed
when I did get one), but even with extra electrodes applied during the
second sleep study, no epilepsy showed at the time (though I have many
apparently neurological problems, some of which look like epilepsy, and
these may have been caused by long-term oxygen-starvation from the
OSA...). I have been having problems finding definite answers, though...
I hope the Depakote works for you - and with proper monitoring, it
should be safe (and hopefully, effective).
--DR

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Raistlin - 27 May 2004 15:30 GMT

hey kylie,

we're in the same age, i have absences, too. unfortunately there isn't
that much i can tell about it - exept maybe how to learn realizing them
yourself.

i think your doc and you have to try out the blood level thing. from what
i know, it's different with every person.

Raist

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Dave ???? - 27 May 2004 17:09 GMT

> Hi all,
>
[quoted text clipped - 19 lines]
> -- Kylie
> (remove NOSPAM from email addy to reply)

Howdy Kylie!

When I was a teen I was diagnosed with absance and grand mal seizures.When I
got older I had a dramatic decrease in grand mal (tonic-clonic) and they
changed the name of my absance seizures to complex partial seizures.

The seizures didn't change, just the name.

If you're taking Epilim, watch your liver!

Signature

Dave ????
http://www.howdydave.com

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Marco - 27 May 2004 20:01 GMT

> Hi all,
>
[quoted text clipped - 20 lines]
> -- Kylie
> (remove NOSPAM from email addy to reply)

Hello Kylie,

I am 29 years old and have been using Depakote as well since three or four
weeks now. The only side effect I had is that I am a little bit sleepy
during the day. Before I started taking medicines, I did not sleep very well
(I usually woke up at 05:00 / 05:30 AM). Now with the medicines, I wake up
at 05:59 AM (one minute prior to the alarm).

So, if we do maths regarding sleepy effect: -1 + 1 = 0 (no side effects at
all). My neurologist prescribed me 1000mg per day (92 KG weigth/ 1.92m
tall).

My current status is that I will have to give blood for analysis in June and
I bought some books about this topic so I may be able to give some answers
later on (I am a fast reader).

Signature

Thanks for responding.

Bye,
Marco

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Marco - 27 May 2004 20:13 GMT

> Hello Kylie,
>
[quoted text clipped - 11 lines]
> June and I bought some books about this topic so I may be able to
> give some answers later on (I am a fast reader).

One of those things I read is that Depakote has one disadvantage for
neurologists: it goes almost immediately to your brain and stays there for a
while which means it vanishes out of your blood levels very quickly.
Meaning: from your blood levels they cannot make accurate decisions. Your
feedback to your neurologist what happens during the "testing period" is
and will be much appreciated. Ask someone to monitor you a little bit and do
not end up finding yourself in "deep thoughts" as I have been doing that
recently, but I ended up / woke up on a busy intersection within a big city
in The Netherlands.

Am I a fast reader, or what? :-)

Signature

Thanks for responding.

Bye,
Marco

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TomPennyWilson - 28 May 2004 08:31 GMT

Depakote caused my daughter to lose 1/2 of her hair in two months and she had a
10 lb. wt. gain. She now takes combination of Keppra and Lamictal.

Penny

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Marco - 28 May 2004 08:54 GMT

> Depakote caused my daughter to lose 1/2 of her hair in two months and
> she had a 10 lb. wt. gain. She now takes combination of Keppra and
> Lamictal.
>
> Penny

Yeah, that is one of those side effects mentioned that does not occur that
regularly. I am sorry to hear your daughter had to face that. Hopefully
Keppra / Lamictal will have better results.

Take care.

Signature

Thanks for responding.

Bye,
Marco

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