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Medical Forum / Diseases and Disorders / Epilepsy / March 2004

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Keppra daily dose vs. benefit

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billx - 20 Feb 2004 17:55 GMT
Anyone had experience starting on 1000mg per day and increasing to 2000/3000
per day?  What were the pros and cons of your increase?  The literature I've
read on Keppra lead me to believe that frequency of side effects increases
significantly with dosage level.  I'm on 1000mg and notice some difficulty
dealing with conflicts and suttle loss of coordination.  Wondering how bad
these side effects might get at 2000mg per day.
Dawn Compton - 21 Feb 2004 03:28 GMT
billix wrote:

>Anyone had experience starting on 1000mg
>per day and increasing to 2000/3000 per day?

My neurologist put me on a 1,000 mg of Keppra along with my Dilantin.
After the six seizures the other weekend, it was increased to 1,500.  I
took it for about a week and had to get it lowered back down to 1,000.

>What were the pros and cons of your
>increase?

There were no noticeable pros.  The side effects were greater.  I didn't
find many when I first started it, but after increasing it for a few
days, I had: bad dizziness, nauseousness, and finally, extreme blurry
vision.  This is when it had to be lowered back to the original dosage.
A side effect I have noticed all along is not being able to remember
certain things.
BillX - 21 Feb 2004 10:51 GMT
Dawn,

Sorry you had an adverse reaction to Keppra.  My understanding is this drug
is most effective against partial focal seizures and that people react
differently to it.  To far it's made a huge difference for me but your
comments regarding increasing to 1500mg make me hesitant to increase beyond
the 1000 I'm taking now.

Anyone else on this group (beside myself) had a positive experience
increasing Keppra dosage above 1000mg/day?  What were the pros and cons for
you?

> billix wrote:
>
[quoted text clipped - 14 lines]
> A side effect I have noticed all along is not being able to remember
> certain things.
maureen - 22 Mar 2004 03:35 GMT
I was at 2000 mg /day and the side effects were significant. I am also a
petite woman so I'm sure that doesnt help.  My short term memory is
horrible, I have word finding problems and ataxia ( I walk all over the
place).  Basically, not good for your quality of life.  However, I know
that there have been plenty of people who withstood the increase fine and
the drug has been a miracle for them. So I guess it's an individual thing.

Good Luck!
Maureen
gaross - 22 Mar 2004 04:31 GMT
   Maybe someone who's still around here is using that med.?  Is 2000/day
too high for someone 'petit'... ?  I know that my Tegretol (for example) is
set by body weight, plus szr. type plus metabolism, and we took about 8-12
weeks to get a level that worked, then had to adjust those after about 12-15
months a second time.
  After that, I haven't had a dose change since ~1995/6 now (with my
Tegretol CR + Frisium).

I don't know if Keppra is analogous to that or not, but there **Were people
around here who used it.

  If you don't get any replies by ~Tues. you could try a Google Search on
'Subject contains Keppra' and see what shows up.   Hopefully those
discussing it back then, put Keppra in the Subject line when they posted
too.    G./

> I was at 2000 mg /day and the side effects were significant. I am also a
> petite woman so I'm sure that doesnt help.  My short term memory is
[quoted text clipped - 5 lines]
> Good Luck!
> Maureen
mike k - 22 Mar 2004 08:41 GMT
In article
<66t7c.113759$uUx1.75271@twister01.bloor.is.net.cable.rogers.com>,

>     Maybe someone who's still around here is using that med.?

Been on Tegretol/Keppra combination since June last year.  Horrible
initial side effects, but they wore off after a few weeks.  At last
visit to my neurologist, we discussed the possibility of upping the
Keppra to 1500mg (currently on 1000mg).  He was very reluctant to take
it above that due to the side effects reported by other patients.
Thankfully though, I haven't had to make the change.  Now 9 months
seizure-free.  

Had more problems a couple of years ago when we increased the Tegretol
dose to 2000mg.  At 238lbs I can hardly be called "petite", but that
dose was far too much for me.  Finally called it a day when there was
no appreciable reduction in seizure frequency & after one particularly
nasty little episode when most of the small blood vessels in my upper
right arm cut loose & left me looking like my wife had beaten the cr*p
out of me!
Daz_n_Pat - 22 Mar 2004 14:05 GMT
2000mg tegretol??
Isn't that way too high?
I'm 100kg....I think that's about 220 pounds, not a particularly large
build, just tall, and I'm on 1600mg which I'm told is the maximum for
anyone. Maybe in different countries they have different maximum levels? I'm
in New Zealand.

Darryl.

--
To reply, change daryl to darryl in address.

"It's all fun and games till someone loses an eye"
Quote: My Mum

> In article
> <66t7c.113759$uUx1.75271@twister01.bloor.is.net.cable.rogers.com>,
[quoted text clipped - 16 lines]
> right arm cut loose & left me looking like my wife had beaten the cr*p
> out of me!
mike k - 22 Mar 2004 18:21 GMT
> 2000mg tegretol??
> Isn't that way too high?
> I'm 100kg....I think that's about 220 pounds, not a particularly large
> build, just tall, and I'm on 1600mg which I'm told is the maximum for
> anyone. Maybe in different countries they have different maximum levels? I'm
> in New Zealand.

Certainly was too high!   Was really a last ditch attempt to try for
control using monotherapy.  Had previously tried combinations of
Tegretol/Lamictal & Tegretol/Neurontin with very poor results.  IIRC
1600mg was the maximum my GP could prescribe, but can go up much higher
under the supervision of a neurologist.

Signature

Mike K
==
remove random numbers to email

Isabelle - 22 Mar 2004 20:49 GMT
Hi there

I was on 1200 tegretol retard, 150 lamotrigine and frisium 10mg.  I am 32
female and weigh 48 ish kgs.  I have been reducing my tegretol over 6 months
and i am now on 600mg.  I must admit that when on 1200 for 13 years almost,
i never felt drowsy etc.  But now that im slowly coming off or reducing i
can see a difference.  I feel more alert and have been told i seem more with
it.  But if i was told that i had to go back on i would not be upset as long
as my attacks were under control.  I have been seizure free for 14 years
almost.

Any comments would be nice.

Isabelle xx
gaross - 22 Mar 2004 19:54 GMT
I was only at 2x 400mg Tegretol per day (160 lbs/70kg)-- so total 800mg.
When I had more seizures, rather than increase the Tegretol CR dose, my
Neuro **slowly (over 8 weeks) phased out the night time dose (400mg)
Tegretol.  About week 4 of that phase-out, we added half a tablet of a new
adjunctive med. that had just been approved in Canada (5mg Clobazam =
Frisium) for Complex Partial? Seizures.   When I had some more szrs. we
upped that to a full tablet at bedtime (10mg).
   When I had more seizures ~6 months or longer later, we added 5mg (half a
tablet) *with the Morning Tegretol of 400mg, to finally a full tablet then
too (10mg Frisium).   That was about 1996, and was the last time I've had a
Med. or Dose change (8 years).
   Fwiw, at onset (1993) my Neuro told me I could expect 2-3 szrs. per
month, because of MRI etc. tests that showed my szrs. came from damage in
Right Temporal Lobe.  So 0 a year compared to 24 is pretty good.

   I was *never above 800mg per day of Tegretol, and expect that such a
high dose (even with the weight), might produce a Foggy sensation or affect
alertness.   But we have had a few people posting who only were using
Tegretol and were between 800 and 1200 mg.   Like Daz n Pat say below,
without being Doctors, that seems a fairly strong dose unless there are more
seizure problems than we could know about.

   You could ask the Dr. whether there might be a Second med. you could use
WITH the Tegretol but with Lower Tegretol dose, and slowly phase Down the
Tegretol dose to get better control?  My Frisium (for example) is listed as
'for adjunctive therapy', so it's not intended to be used alone, but with
e.g. Tegretol or other Anti Ep. Drugs.
  There might be others approved where you are, that could allow lowering
Tegretol slowly but w. maximum control.

   (Some people can't even use Tegretol because of reactions with it, or
might have other reactions that require them to reduce it or monitor it
closely.   Tegretol, for example, is also used by people who have had Stroke
s and some other 'elderly conditions' unrelated to Epilepsy. )  G./

> 2000mg tegretol??
> Isn't that way too high?
[quoted text clipped - 26 lines]
> > right arm cut loose & left me looking like my wife had beaten the cr*p
> > out of me!
mike k - 22 Mar 2004 20:18 GMT
In article
<tDG7c.1199$uz5.1181@twister01.bloor.is.net.cable.rogers.com>, gaross
<snipped>

>     I was *never above 800mg per day of Tegretol, and expect that such a
> high dose (even with the weight), might produce a Foggy sensation or affect
> alertness.  
<snipped>

heh - think the word you're looking for is *stoned*.  Spent 5 weeks off
work & don't remember too much about it.  

Now down to a much more sensible 800mg/day.  

Doc has tentatively suggested a reduction now that the Keppra's proving
such a success.  Last seizure was in mid May '03 & I'm very reluctant
to do anything which may upset things.   I'm not having any side
effects from the combination, so I take the view that if it ain't
broke, don't fix it.

Signature

Mike K
==
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billx - 22 Mar 2004 22:33 GMT
I've been on 1000mg Keppra per day going on three months in addition to
500mg of Dilantin.  First month was great but lately I've been very anxious
right before each dose like a junky waiting for a fix.  My neuro scripted me
to increase to 2000mg per day but given current level of anxiety don't think
I could tollerate any more.  Drug studies on Keppra claim no significant
change in anti-seizure effect over course of year in laboratory animals.
Guess they couldn't ask the animals about other side effects like anxiety
;-)

> I was at 2000 mg /day and the side effects were significant. I am also a
> petite woman so I'm sure that doesnt help.  My short term memory is
[quoted text clipped - 5 lines]
> Good Luck!
> Maureen
mike k - 23 Mar 2004 08:43 GMT
> I've been on 1000mg Keppra per day going on three months in addition to
> 500mg of Dilantin.  First month was great but lately I've been very anxious
[quoted text clipped - 3 lines]
> change in anti-seizure effect over course of year in laboratory animals.
> Guess they couldn't ask the animals about other side effects like anxiety

that happened to me when I first started the Keppra.  On 2x250 mg/day,
I would get quite irritable & nervous late afternoon.  The feeling
disappeared once I had my evening dose.

The symptoms went completely once the dose was increased.  Initially to
750mg (3x250mg, early am, lunchtime & late evening) & then eventually
to 2x500mg.

Might be worth looking at a modest increase, but spread out over the
day more.

Signature

Mike K
==
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Valerie Malmont - 23 Mar 2004 19:36 GMT
I take 500 mg two times a day, no seizures, no migraines, and I feel perfectly
normal.  For awhile, I accidentally doubled my dosage (my bad) and I found
myself sleeping all day.  When my doctor realized what had happened, she
reduced the size of my dose and I've been fine ever since.

Valerie
Chris Lesurf - 24 Mar 2004 16:25 GMT
When I was on 400mgm lamotrigine/day I used to get blood vessel patterns
left permanently if I was ever bruised.

While on Keppra I had serious fluid retention problems causing an increase
in clothes size and carpal tunnel syndrome (bad in my right wrist and some
symptoms in my left one) which meant my hands were very weak.
I've been anxious ever since but it is at least beginning to wain a
little now.

My present daily doses are 275mgm lamotrigine, 10mgm Frisium and 20mgm
citalopram (as well as something for blood thinning because my MRIs show
brain scars, one of which was almost certainly due to being told to stop
taking a beta-blocking drug but not told to do it slowly and its
withdrawal probably triggered a stroke)

Chris L.

In article
<a02bbaf6dde8ac2352d1e71c88745fd3@localhost.talkaboutsupport.com>,
> I was at 2000 mg /day and the side effects were significant. I am also a
> petite woman so I'm sure that doesnt help.  My short term memory is
> horrible, I have word finding problems and ataxia ( I walk all over the
> place).  Basically, not good for your quality of life.  However, I know
> that there have been plenty of people who withstood the increase fine and
> the drug has been a miracle for them. So I guess it's an individual thing.

> Good Luck!
> Maureen
jr - 25 Mar 2004 00:17 GMT
I have taken 1500 Mg of Keppra the morning and 1500 Mg the evening for
four months. I still make some crises of which I do not realize. They
are my parents or my friends who describe them to me. I have the
impression that Keppra obstructs me for the concentration and the
memory. (But these problems are also the consequence of meningitis
that I had in 1991, therefore it is difficult to correctly evaluate
the responsibility for Keppra in my problems). Sometimes I do not
remember something, I rest the same question. I adapted to these
problems since my childhood. I note many things to organize me
(planning, diary, appointment, etc...). I arrange, I classify my
business in a "logical" way. I succeeded in making long studies (I
finish studies of physics in the field of the "physics of surfaces and
thin layers" to become engineer). Despite everything, I am not
completely satisfied by Keppra: I would like to be able to lead, to
make the sports which I like (alpinism, ski, cycling...), to found a
family, etc... This is the reason why I think of going towards the
surgical solution the next year.
Good luck. In a friendly way, JR.
billx - 25 Mar 2004 23:09 GMT
At 3000mg per day you're on the high end of the typical dose scale for
Keppra.  I'm still at 1000mg even though my neuro encouraged increasing to
2000mg and am starting to adjust to the anxiety I sometimes feel close to
next dose.  The 1000 makes me sleepy and affects my coordination and memory
to some degree.  Can only imagine what 3000/day might do.  Good luck in
finding an alternative solution to your epileptic problems.

> I have taken 1500 Mg of Keppra the morning and 1500 Mg the evening for
> four months. I still make some crises of which I do not realize. They
[quoted text clipped - 14 lines]
> surgical solution the next year.
> Good luck. In a friendly way, JR.

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