Hello,
I am new to the group. I am 47, was diagnosed with seizures in November and
put on Tegretol. Now I am taking 800 mg per day.
It does seem to take care of the seizures, but I have some side effects that
concern me.
I seem to have temporary memory losses. I can't find words as fast as I used
to, sometimes substitute other words, that don't quite fit. Or, for a split
second, I forget what something is for. So, I am getting really worried that
I am also getting Alzheimer's here. I am writing to this group to find out,
how common are these experiences on these meds. Is it just me, or is it the
medication doing this to me?
Thanks for any response!
Anna
G. - 04 Mar 2007 18:40 GMT
> Hello,
> I am new to the group. I am 47, was diagnosed with seizures in November and
[quoted text clipped - 9 lines]
> Thanks for any response!
> Anna
Did they tell you which type of seizures you were having? I use
Tegretol CR to control Complex Partial (formerly Temporal Lobe)
seizures. While I once used 800mg, I now use only 400mg but with a
second (newer) medication added.
It's important (in case you weren't told), to take the dose at
rate the Dr. has set and not miss or skip doses without the Doctor
helping with any changes, as that can also bring on seizures.
Also Alcohol and Grapefruit Juice can interfere with Tegretol
functioning. (Those should have been put on any printouts you got
from the Druggist when the prescriptions were first filled. If they
weren't there's a medications glossary under U.S. Ep. foundation
website at http://efa.org .
The memory losses you describe are consistent with either Simple
Partial or Complex Partial seizure types, and not necessarily related
to a particular medication. If your seizures start in one of the
Temporal Lobes that's the area where new learning and short term
memories are stored, so a disruption in that area can be a source of
some of the symptoms you described.
Several of the people who used to be active here have that type
of seizure also. I don't know if they're still reading this group
though. We had a 'kid' disrupt the group last November and post
stupid posts here, and might have chased off some of the regulars who
used to post here.
I doubt 'the kid' is still online as someone else filed a
complaint with his provider (I didn't know how to do it), and he's
likely been removed as he was disrupting several Chronic Health sites
at the time. You could read the group over next 3-4 days and see if
some of the others are still reading the group, as they have some
other websites they use also, and that some of them maintain.
If none turn up shortly I might still have an older post I used to
do that lists about 4-5 other websites with more specific information
on e.g. First Aid and Seizure types, but the efa site (for one) has
some general information.
Specific to Tegretol, if efa site doesn't have enough, your
Pharmacy might have a site specific to the manufacturer of the
Tegretol that might help too. I use that medication (the controlled
release type), to control above Complex Partial (Temporal Lobe)
seizures so that's why I know that area of the brain can have effects
on short term memory and learning. *Usually once the seizures are
more controlled some of the symptoms might improve. Mine did, but
each of us can react differently depending on the cause or extent of
the damage which is causing the seizures.
Did your Neuro or Doctor ever tell you why the seizures first
started or what might have caused them? That might be a place for
you to start rather than worrying in advance whether it might Morph
into something more serious.
(That sort of 'fear' is common with us, by the way-- that's why I
didn't want to have you become over-concerned about something that
might not happen or be a potential problem unless a doctor has
suggested whether your seizure type could produce that.) G./
G. - 05 Mar 2007 00:22 GMT
> Hello,
> I am new to the group. I am 47, was diagnosed with seizures in November and
[quoted text clipped - 9 lines]
> Thanks for any response!
> Anna
I noticed a spelling difference from one of my pill bottles. If you
can't find Tegretol on a medications search, the Generic name you
might find information under is spelled Carbamazepine.
There are Time released versions (like I use) that sometimes are
followed by XR or CR for Extended or Controlled Release. Most of the
prescriptions (I think), now, are the controlled versions of the basic
Tegretol so that a particular dose can be delayed by several hours
plus or minus the due time, without it causing problems of missing a
dose.
Anyway that spelling I put above will probably bring up more hits if
you use Google or the http://efa.org medications glossary to find
information about Tegretol. G./
Sofia - 10 Mar 2007 22:19 GMT
> I am new to the group. I am 47, was diagnosed with seizures in November
> and put on Tegretol. Now I am taking 800 mg per day. It does seem to
[quoted text clipped - 5 lines]
> group to find out, how common are these experiences on these meds. Is it
> just me, or is it the medication doing this to me?
Hi Anna, I'm Sofie and although diagnosed with epilepsy when I was a
child, I'm 41 now and have several different types of seizures. I was put
on 800mg Tegretol Retard (Controlled Release Carbamazapine) twice daily in
my mid-thirties combined with other meds.
If you are worried about Alzheimer's desease, I really should consult your
GP about it for tests as it's a bad deterioration of the brain and can be
fatal.
More likely though, I think maybe it's just your epilepsy and/or the meds
your on. It's not uncommon for people with epilepsy to get memory loss -
god knows I've had it for years, but I've just gotten used to it after
over 30 years. You just have to take it as part of life I suppose!
Please do consult your neurologist/GP if your worried though!
Sofie

Signature
Please visit my deviantART page: http://sofen.deviantart.com/
Zll51@hotmail.com - 12 Mar 2007 05:08 GMT
Hi Anna,
What you describe sounds like you may be getting sick from the
tegretol. I took it many years ago and had similar side effects. A
google search on "tegretol" "side effecdts" will give you more
information.
Zoe
> Hello,
>
[quoted text clipped - 10 lines]
> Thanks for any response!
> Anna
G. - 13 Mar 2007 18:54 GMT
On Mar 12, 12:08 am, Z...@hotmail.com wrote:
> Hi Anna,
> What you describe sounds like you may be getting sick from the
[quoted text clipped - 17 lines]
> > Anna- Hide quoted text -
> - Show quoted text -
Tegretol is used to treat Complex Partial Seizures, formerly called
Temporal Lobe seizures since that's where that type of seizure starts
from (the seizures focus).
The Short term memory problems are common wrt. the **Temporal
lobes, and seizures starting in that area of the brain, and **not from
the medications. That's why she'd be better off getting a Doctor's
input rather than trying to self-diagnose on the internet (if that's
what's happening).
The Memory comes from the Temporal Lobes and seizures or damage
there can disrupt that, *not the pills or alzheimers and other
unrelated stuff...
IF you want a printable page on Tegretol (Carbamazepine) your
Pharmacy should have given you, go to the U.S. Ep. foundation glossary
at http://efa.org and type in Tegretol in the Search window, then
printable version, and print it. Avoid Alcohol and Grapefruit Juice
--> 2 of the most common things that can interfere with use, from the
Patient's diet side. /G.
dream923 - 17 Mar 2007 03:57 GMT
> Hello,
>
[quoted text clipped - 10 lines]
> Thanks for any response!
> Anna
I am going thru the same things. I am on a different medication
though. I'm on Lamictal 250 mg a day.
I have memory loss and cant get my words right.. Its like I cant
retrieve the words from my brain. Most of the time I realize when i
say something incorrect and think to myself why did I say that when I
know the word. This is really affecting my social life, Im starting to
avoid people because I dont want to embarass myself. Im tired of this
sometimes I think maybe I should stop taking the meds and take my
chances. Whats the point of taking the meds if these are the side
effects? If anyone can relate or is on Lamictal please respond.
G. - 18 Mar 2007 15:07 GMT
> > Hello,
> > I am new to the group. I am 47, was diagnosed with seizures in November and
[quoted text clipped - 13 lines]
> though. I'm on Lamictal 250 mg a day.
> I have memory loss and cant get my words right.. Its like I cant
**********************************************************
> retrieve the words from my brain. Most of the time I realize when i
> say something incorrect and think to myself why did I say that when I
[quoted text clipped - 3 lines]
> chances. Whats the point of taking the meds if these are the side
> effects? If anyone can relate or is on Lamictal please respond.
If "Howdy Dave" is still reading this group, he knows the word for
'tip of the tongue' memory. It's not the same and comes from a
different area of the brain than Short term Learning and Memory I
described earlier (mine and poster was Temporal Lobe - ergo the
Tegretol to treat it).
Lamictal treats other types of seizures and has its own sets of
side effects. If you didn't get information on it there's (also) a
glossary under http://efa.org site.
Do the meds. control the szrs. you had? If they do, that answers
the 2nd last question you posed. Not all medications give 100%
control to 100% of users. But you and your Dr. would have to assess
if they give more control than without them. Stopping any AntiEp
Drug (AED) should be done with a Doctor, as some need to be slowly
removed to prevent worse szrs.
Does the Dr. know you are having the memory lapses? (those are
different from the type I described to the original poster wrt.
temporal lobe seizures). If they don't, tell them about it and ask
if there's a change in the meds. that would help or whether you should
adjust the doses to correct the symptom you describe. (If the Dr.
doesn't know about the 'tip of tongue' memory thing, they can't
suggest what to try to fix it-- but self medicating and stopping some
of the AEDs abruptly is not a solution.)
PS-- there *were people here who were using **Lamictal. None have
replied to you yet that I've seen. G./
Jim - 18 Mar 2007 23:14 GMT
> > Hello,
>
[quoted text clipped - 21 lines]
> chances. Whats the point of taking the meds if these are the side
> effects? If anyone can relate or is on Lamictal please respond.
When I started on Lamictal the same word problem happened to me. I'm
happy to report that it did not last long and completely disappeared
in less than a month. I've been on Lamictal since August 2006.
Jim