Switching from Depakote to Keppra - has anyone else ? Also Iron in Liver ???
gel...@nyct.com
After a long ordeal of blood, genetic, CAT scans and a liver biopsy my
hematologist and Gastro
suspect my Depakote is building up the Iron in my liver - plus the fact
that I am Anemic with Beta Thalassemia Trait which was baffling them
since I should have a iron deficiency.
I'm starting Keppra tmrow which my Gastro says is more liver safe along
with Neurontin....
But me and my Neurologist choose Keppra instead.
Can anyone tell me about their trials and tribulations with Keppra
especially if you were switched from Depakote and/or had iron in your
liver
Im finding a wealth of info out there but nothing about us patients
experiences....
Thanks
George
Julie
year. My neurologist is taking me off phenobarbital and before we
started the very slow reduction he wanted another AED on board to
protect me from a seizure caused from withdrawing from the phenobarbital.
The only problem I had was feeling drugged at first, but I think that
was because I still had two drugs to start. Now the symptoms I am
having are related to withdrawing from phenobarbital. The Keppra is
working great.
An interesting side point. We discussed all of my options and my
neurologist (who happens to be an epileptologist) said that if he had to
take an AED he would choose Keppra because it works well, with less side
effects.
Take care,
Julie
gel...@nyct.com
Julie,
I used this group eons ago back before the web emerged and all we had
were these newgroups and not a friendly interface like the WWW. Its
helpful to finding other patients and information.
I was on Dilantin & Phenol for years - phenolbarbital did alot to my
memory, cognitive functions, daily tasks, etc etc but it worked well
for the seizures. Even a phenol IV left me in a zombie state for over a
week - i was never so sedated in my whole life.
I never had withdrawl symptoms even with other controlled substances
like ativan so I was lucky in that respect.
Thats great Keppra is working for you......is their a primary
medication you are taking or just the Keppra ???
What have you experienced if you dont me asking ??? appeite, dizziness,
other side effects ??
Thanks alot
George
Julie
>
> I used this group eons ago back before the web emerged and all we had
> were these newgroups and not a friendly interface like the WWW. Its
> helpful to finding other patients and information.
>
> I was on Dilantin & Phenol for years - phenolbarbital did alot to my
> memory, cognitive functions, daily tasks, etc etc but it worked well
> for the seizures. Even a phenol IV left me in a zombie state for over a
> week - i was never so sedated in my whole life.
>
> I never had withdrawl symptoms even with other controlled substances
> like ativan so I was lucky in that respect.
>
> Thats great Keppra is working for you......is their a primary
> medication you are taking or just the Keppra ???
> What have you experienced if you dont me asking ??? appeite, dizziness,
> other side effects ??
>
> Thanks alot
>
> George
>
Hello George,
The doctor wanted me to go on Keppra first to make sure withdrawing from
phenobarbital didn't trigger a seizure. So those are the only AEDs I'm
taking. We were thinking that I might be able to go off AEDs. I haven't
had a tonic clonic seizure for 11 years. I have had two EEGs since I
started this drug test and they are both the same showing a little
slowing in the (I think it's the right temporal lobe). So I'm not sure
yet if I will try to go off Keppra after I get off phenobarbital.
I'll be on phenobarbital probably for about a year. The last contact
with the doctor - they said the next time I drop my dosage I should slow
up the time between dropping the dose. For example, I had (4) 32.4 mg
pills to start with. On the 18th of each month I would take away 1/2 of
one 32.4 pill. I am down to 2 pills now. But because of the withdrawal
symptoms, he told me to wait about 6 weeks until I drop it again, and to
time it for a weekend so it doesn't effect my work. Since I work for
myself, from home, that really doesn't matter, but I guess he was
thinking of my need to get to my clients during the week.
I started Keppra slowly before I started taking away the phenobarbital,
so we would know which symptom was caused by Keppra and which was caused
by withdrawal. I don't remember anything specific being a problem. I
was feeling overly drugged at first. Which I think surprised my doctor.
But I think that was because of taking both drugs.
The interesting thing is that I went to a chiropractor, which I had
never done before. I was going to see if he could help me out with my
shoulder (dislocated it many moons ago during a seizure). After the
first session with the chiropractor I told my husband that I felt
different as far as my feeling drugged. My coordination was better. I
could talk more clearly and walk straighter. I didn't have any
expectations in going to the chiropractor, so I don't think it was a
placebo affect. I talked to my neurologist about it and he said, if the
chiropractor helps me then, great, but he has seen too many cases of
people injured from them adjusting the neck, so I told my chiropractor
that we won't do that adjustment. I went to see him yesterday because I
thought maybe he could help me with the symptoms I was having from
withdrawal. My headache is minor now. And the ache down my spine is
almost gone. So he was able to help.
The only thing I can think of that may have been a side effect of Keppra
is that they say you can feel irritated. That has happened a couple
times, but doesn't everyone feel irritated once in a while. I'm a
pretty calm and laid back person, so I guess it was unusual for me.
Take care,
Julie
gel...@nyct.com
Julie
being the 3rd day I'm having better coordination, etc. but my appetite,
dizziness and even my mind/body felt seperated last few days - my only
other option was Neurontin which would have made me in a zombie state
like when I had a phenolbarb IV after my last Grand Mal 16+ ys ago
Its a gradual process with the Depakote especially - and i had to map
the schedule out and sort the medicines in my medicine planner
To make matters more complicated my Hemoglobin went down after they
took blood from me to get iron out of my liver so I was zonked after
that and now this within weeks of each other..........im glad im not
driving too much - i take the train to work so its alot easier on me
during this transition
Be glad your getting off the phenolbarbital do you feel improvements
with your memory, etc ? It did a real number on me for years
Thanks alot for you feedback - i really appreciate it
George
partials
> being the 3rd day I'm having better coordination, etc. but my appetite,
> dizziness and even my mind/body felt seperated last few days - my only
> other option was Neurontin which would have made me in a zombie state
> like when I had a phenolbarb IV after my last Grand Mal 16+ ys ago
Hi George. Although you aren't and probably won't be using it, I just wanted to
respond to your fears about Neurontin. It seldom actually has undesirable side
effects for most people and is one of the best in that regard. I currently take
3x600mg = 1800 mg/day of Neurontin without side effects. It also didn't control
my seizures just by itself and it's been the phenobarbital and now dilantin that
I get memory loss and clumbsiness from among other things.
gel...@nyct.com
I dont know if i mentioned it wasnt my neuro but my Psych who
prescribed it for me - but for sleeping......and it did work ....too
well............my docs said it might just take some time to adjust but
I need to be coherent to get around NY City and with my balance which
was severely affected - then again everyone has different reactions and
side effects.........
Im glad the Neuro is working for you !!!!!!!!!
Gettting the right regimen that works can be a tedioius and troublesome
process for many - oddly enuff since I have begun the transition im not
noticing my petit's/aura's for the last few days........
I hope this works
George
Julie
>
> Be glad your getting off the phenolbarbital do you feel improvements
> with your memory, etc ? It did a real number on me for years
>
> Thanks alot for you feedback - i really appreciate it
>
> George
>
I do think my memory is getting better. It will be interesting to see
how much better it gets as I get closer to being off it all together.
Right now I'm only half way there.
Take care,
Julie
gel...@nyct.com
Its a known side-effect that it hampers your memory and other mental
functions
heck when i couldnt remember my phone #, brothers name, had trouble
adding etc etc
right after I was put on it phenolbarb was the culprit........yet it
did work !!!!
Plus I was finishing college - more like struggling and begged my neuro
to get me off it
otherwise i would have never made it
George
howdydave
Howdy!
I haven't had any problems with Keppra!
Never had a problem with Depakote either, but they always
kept a close watch on my liver while I was taking it!
Dave
gel...@nyct.com
As for a big change im encountering that baffled my pharmacist
is my appetite.....I'm so hungry in the afternoon and evening
She thinks its from the Depakote decreasing.....and so do I
Im calling my Neuro about it tmrow......everthing else seems to be ok
lately
but its a relatively new medicine and not much is known or available
about it
........to be continued...........
thanks alot
george
Sofia
> Howdy!
>
> I haven't had any problems with Keppra!
>
> Never had a problem with Depakote either, but they always
> kept a close watch on my liver while I was taking it!
Hhmmm - I can't still be the only person on this newsgroup that is also
on keppra with a combination of other meds, and still gets regular
grand-mal seizures approx 2-3 times per month, plus several other smaller
types of attack's regularly daily!
Keppra is definitely NOT working for me, so in my last meeting with
my neuro' he has just suggested to me that I keep my tegretol, as my
seizures always begin to increase without it, increase my zonisamide, and
completely wean me off my keppra for another new drug called Pregabalin.
My point is, yes maybe Keppra works well for individuals with simple
partials by itself, but maybe it might be wiser taking it in combination
as two small doses with another med' - it might even be easier to get back
to normal if it doesn't actually work!
Good Luck
Sofie
--
Please visit my deviantART page: http://sofen.deviantart.com/
gel...@nyct.com
Sofie,
Getting the right medication(s) isn't an exact science especially with
our Epilepsy..
Luckily we have more medications and more advanced testing to work with
than decades ago, but its not as simple as a blood test.....
Luckily since my transition began with Keppra as im phasing out
Depakote
I am still droggy, eyesight blurry, appetite increased (from the
Depakote as me and my pharmacist figured out) and possibly lower
hemoglobin but I cant confirm that right now.
My aura's/petit's/spells also have stopped...I'm hoping it stays that
way after the Depakote is diminished......
I read Keppra is one of the "Add on" medications which is used with
Tegretol, etc...
My Hematologist and Liver doctors were both baffled with my low
hemoglobin and high iron which were explained genetically and with
other tests to be:
-Beta THALASSEMIA trait (usually with low Iron, but not in my case!!)
-Positive for heterozygous (both parents) presence of the H63D mutation
in the
HFE gene (Negative for the C282Y mutation)
-Hemachromotosis from Iron overload which is why they told me to stop
Depakote and take more liver-safe medication such as Keppra or
Neurontin
Have you explored Vegal Nerve Stimulator or other options ??
You learn the most from communicating with other patients to find out
what they are doing; try their doctors, etc etc
Have you tried an Eplileptologist ???
Good Luck
George
gel...@nyct.com
major symptoms/changes/problems:
- hunger the first week due to the drop in Depakote my pharamacist
deduced
- dizzyness, co-ordination problems
- alot of blurry vision on and off
- NO MORE PETIT'S/AURA'S !!!!! Depakote and or my liver situation
might have made the medicine ineffective
2 more weeks and then im off Depakote forever.....
luckily this Keppra is working out - finding the right medicine is
never easy and its worse
when your in a situation with my liver and only 2 liver safe meds for
seizures are out there!!!!
It pays to research and ask around i wasnt sure if this newsgroup was
being used much since
web sites are all over
Thanks alot
George