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Medical Forum / Diseases and Disorders / Epilepsy / January 2006

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Meds change from Lamictal and zarontin

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jess - 09 Jan 2006 21:48 GMT
Hi,

I was diagnosed with epilepsy for 11 years  but have had it for about
15 years. For the last 10 years I have been on lamictal (400mg) and
Zarontin (ethosuximide) - 750mg per day. Zarontin only controls absence
seizures. I get both tonic clonic and absence seizures.   I recently
had a break through seizure ( first in 9 years) as a result of my
lamictal levels being too low. They have now upped the dosage to 500mg
per day. The Zarontin has never fully controlled my absence seizures
but does make a massive difference

After reading up - I found that Zarontin  has been bought by a new
company and they are removing the capsule form and only leaving syrup
as of October 06.  So my neurologist and I  decided that I would try
and change over to a small dosage of Epilim  (800mg) per day.

I have just started to introduce the drug into my system  (2nd day)and
am not feeling altogether that good.  I feel  very tired (obviously)
and also feel a bit all over the place. Am finding it difficult to
concentrate and also my co ordination is  not so great.

Because it has been such a long time since I changed meds - I am
wondering if this is normal and if it will go away as my body adjusts.

I have also heard that there is a good chance of gaining weight and
losing hair on epilim and am wondering if there is anyone who has  been
on my new drug combo and not had side effects. Also - how long will it
take for me to  show signs of side effects

Any  info from anyone who has been in a similar situation would be
great - thanks :)
purple-cow - 10 Jan 2006 14:44 GMT
Hello jess,
Zarontin is commonly used for patients who are having absence seizures,
but it’s also used for myoclonic seizures as well. Now the thing about
lamictal is that it can control both the tonic clonic and absence, but it
is also used for patients with simple and complex partial seizures,
secondarily generalized seizures, lennox-gastaut, and juvenile myoclonic
epilepsy.
The “published” therapeutic range for Lamictal is 4 – 20. This is just a
guideline and starting point for doctors to use for their patients. It is
based upon a study of a particular group of people with epilepsy. They
average all of the results and the lower limit is set by the minimum
amount most people need to have in their bloodstream to have a therapeutic
effect (reduction in seizures). The upper limit is the maximum amount in
the bloodstream that most people can have before they start having
unacceptable side effects from the medication. Notice the keyword here is
‘most people’.
There is nothing in there that says this applies to you, nor does it apply
to everybody in the study.
Each person has their own individual therapeutic range. The lower limit is
the minimum amount that you need to have in your bloodstream to cause a
reduction in seizures, and the upper limit is the maximum amount you can
have in your bloodstream before you start having unacceptable side effects
from the medication. Notice the keyword in that is ‘you’.
Whatever that lamictal level was for you is most likely right around the
lower limit of your individual therapeutic range. BTW, I’m also on
lamictal and found out recently that the amount in my bloodstream is also
low, because I’m still having seizures but no side effects. It has reduced
the previous amounts of seizures I used to have. So I’m going to get my
neuro to increase it. Maybe you can get your doctor to do the same thing
and possible avoid having to take any additional medications. Use only one
medication whenever possible, which is monotherapy.
Who knows, your therapeutic range of lamictal may be partially above the
published number of 20. The only way you and your doctor can find out what
your limit is, is by slowly increasing the dosage amount little-by-little.
Whenever anyone starts to take medication and whenever they increase the
dosage amount, most likely there are always going to be side effects and
they’ll usually fade away once you reach the level amount your doctor
wants you to be at. If your seizures have reduced even more then that is
great. But if you finally come to a point where your seizures have come to
a halt and you are not having any side effects, then the doctor’s goal as
finally been reached. ‘No Seizures, and No Side Effects’. The doctor
should then order another blood test to know what your ideal number amount
necessary is. Once this has been done, ask the doctor what that exact
number is so you can keep track of it yourself. And besides, Lamictal
might be the only medication you need to be taking to control all of your
seizures.
I hope that this helps you and gives you some ideas about what you may
want to discuss with your doctor. Good luck.

Bruce
jess - 11 Jan 2006 00:32 GMT
Hi Bruce,

Many thanks for taking the time to give me such an in depth response.
I dont get any side effects on the lamictal which  has been an absolute
blessing because   years ago when I was first diagnosed after trying
almost every drug around, I either didnt respond or got really bad side
effects.

The interesting situation for me was that  in the last year I have
gotten really fit and started exercizing and running quite a bit. I had
the suspicion that my metabolism may have increased and consequently my
drugs were being absorbed into my system quicker thus lowering my
levels. My neuro said that  could be a reason but couldnt say for sure.

Since I have upped my dosage of lamictal I have been feeling much
better. When I asked  my Neuro if I could just be on lamictal, she said
no... that I needed the zarontin as well.... which I am now swapping
for epilim.

She also mentioned that I would be a likely candidate for Kappra
(Kapla??) which I could use as  a monotherapy as it controls both
absence and tonic clonics. At the moment it is not subsidized in NZ but
I am moving to the UK in May .. so she said to give it a go then ...
we'll see. I havent heard much about Kappra  but I believe it is a very
new drug.

At the moment my biggest concern is the side effects that may result
from Epilim . I was on Convulex years ago which I belive is identicle
to Epilim minus the Sodium. I had really bad side effects - (massive
weight gain and hair loss)  but who knows that was  years ago and
perhaps my body has changed now ...  Time will tell I guess.

Thanks

Jess :)
purple-cow - 11 Jan 2006 07:52 GMT
Jess,

Keppra (levetiracetam) became available in the United States in 1999. So
yes, it is a fairly new medication. I by the way happen to be on that
medication right now as we speak, along with the Lamictal. My Lamictal
might be low for me, which is why I'm going to make a request to my
neurologist next week during my next visit, to increase the dosage
amount.

Here's a website that will connect you to several more additional sites,
containing information about Keppra and it does mention that it is
available in the UK...
http://www.epilepsy.com/medications/b_keppra_intro.html

You are right. Time will tell.

Glad to help.

Bruce
Chris Lesurf - 16 Jan 2006 06:30 GMT
Side effects are very individual.

Mine with 400mgm/day lamotrigine (Lamictal) was feeling sleepy and easy
bruising which left a red blood vessel pattern where there had been
bruises. That stopped when I reduced the dose to 300mgm/day.

On phenytoin (Epilim) my gums grew and became very uncomfortable and this
happens to quite a few people.

Keppra caused fluid retention (I realised this because I was putting on
weight without changing my diet) which made all my joints uncomfortable.
It is not recognised as a Keppra side-effect but very definitely was
because it started and stopped at exactly the same time as I was taking
Keppra. It caused carpal tunnel syndrome (where the nerve in one's forearm
suffers from pressure and becomes painful and awkward to use). I didn't
know that fluid retention causes carpal tunnel syndrome but none of the
doctors I saw seemed to know either !
I believe Keppra  also made my memory worse but that may have been a
consequence of sleep being interrupted by pain in joints.

Best of luck !

Chris L.

> Hi Bruce,

> Many thanks for taking the time to give me such an in depth response.
> I dont get any side effects on the lamictal which  has been an absolute
> blessing because   years ago when I was first diagnosed after trying
> almost every drug around, I either didnt respond or got really bad side
> effects.

> The interesting situation for me was that  in the last year I have
> gotten really fit and started exercizing and running quite a bit. I had
> the suspicion that my metabolism may have increased and consequently my
> drugs were being absorbed into my system quicker thus lowering my
> levels. My neuro said that  could be a reason but couldnt say for sure.

> Since I have upped my dosage of lamictal I have been feeling much
> better. When I asked  my Neuro if I could just be on lamictal, she said
> no... that I needed the zarontin as well.... which I am now swapping
> for epilim.

> She also mentioned that I would be a likely candidate for Kappra
> (Kapla??) which I could use as  a monotherapy as it controls both
> absence and tonic clonics. At the moment it is not subsidized in NZ but
> I am moving to the UK in May .. so she said to give it a go then ...
> we'll see. I havent heard much about Kappra  but I believe it is a very
> new drug.

> At the moment my biggest concern is the side effects that may result
> from Epilim . I was on Convulex years ago which I belive is identicle
> to Epilim minus the Sodium. I had really bad side effects - (massive
> weight gain and hair loss)  but who knows that was  years ago and
> perhaps my body has changed now ...  Time will tell I guess.

> Thanks

> Jess :)
 
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