Hi Patsy

My own situation is a lot different than Darryl's, so I can't contribute a whole
lot. What did have me wondering was why the Neuro was starting him out on 1800mg
Neurontin.  That's what I take and it is a fairly high dose that was built up to
over a lengthy period of time. If the Neuro wanted to "give it a try for 3 mths
and see what happens", then I wonder why he didn't start at a lower dose. It
could always be increased if it was helping, but a little more was needed.

I have some of those similar memory problems, but I don't know if it is caused
by my temporal lobes or by the drugs.

Bob

**G* I was only ever at 400mg Tegretol CR Morning and Night(each),  before
we removed night dose (for Temporal Lobe seizures), and replaced the Night
dose with 10mg Clobazam and later added Same to AM dose with the Tegretol.

  Without my being able to diagnose the details., The Tegretol Dose is
'massive' to start with, Before adding any effects from the Epilim then the
Neurontin.  ( I have no experience with either of those.)

    Is your Pharmacy near to you?  Perhaps the Pharmacist could get you
some Printouts on each of the pills and what the various therapeutic levels
might be.
   If you are anywhere near a City that might have an Epilepsy Association,
they might be able to also refer you to a Doctor or ?? who could give you an
**opinion on those doses, based on Verbal information, his Weight and Age.
(You don't normally have to ba a Member to get a Comment or Referral from
them.)

  I think there's also an area under the Ep. Foundation of America Website,
where you can Key in the Medication name and get a One Page printable
summary you can file or print for yourself.   The names you've listed Above
and Below are the same as ones we use in N.America.

  Try http://efa.org   then within the Doorway there's a Medications Tab?
the Med. name (not dose) is keyed in at the Top?  then Click on Enter or
Submit (whatever's there).    You can print the page that's called up then
either return to the Header page or click back, to get to where you'd add a
second med. name.   It should find the Tegretol, if it Can't key in
Carbamazepine.  (There will likely be pages for the Generic, CR or XR
versions.  The CR is a Solid Tablet, while the XR is a Hollow Plastic tube?
with powder inside. Otherwise most of the information should be similar.
See also comments it makes about Grapefruit Juice and Alcohol causing
problems with Tegretol.  That should be in there somewhere too.)

   I didn't notice any particular effects when we added the Frisium
(Clobazam) at Night, and later w. the AM Tegretol, but the Tegretol by
itself is a **Large Dose (Double what I was at after about *8 weeks of slow
increase), Before we cut mine to 400 and added the Frisium(Clobazam).   He's
**also taking Double the dose of that as I am.
   I don't know about the other Tablets, but if he has a Dentist, he should
tell him about the Tegretol (likely all of them).   When my Dentist found
out about my Tegretol,  he changed my Recall rate from each *6 months to
each *4.    Supposedly it can attack Calcium in Some people, and that shows
up first in effect on Teeth before it shows up in any Bone Damage.  I
haven't had any Problems with My doses of Tegretol and Frisium and have used
the Former since 1994, and Both since Late 1995 or early 1996.  Last szr.
*I* had for Right Temporal Lobe damage was June 1998. // G.

He has just been put onto the Neurontin as

It's hard to know if this memory problem thing is going to abate or not
or what the cause of it is.  I'm not going to comment on the meds
because I'm not qualified. If the medication is causing the problem,
they can change that.  If it is due to seizure activity or even the
period around seizures, nothing will work except getting the seizures
under control and even that might not help a whole lot in some people.

You might have to find other ways to give him clues, or actually he has
to find ways to give himself clues.  For example, you could hang a
sample of the paint color on the wall or write it down where he is sure
to be able to find it.  My daughter is a speech therapist/pathologist
and part of her training included helping people with memory problems.
She worked with so I could memorize some family phone numbers.  In fact,
those are the only phone numbers I can remember. Maybe there is someone
in your region with similar training who can help your hubby.

My memory has been tested a couple of times, which has been helpful in
determining how I can help myself, but I already knew it was easier to
remember/recall visual things compared to say, sound.  In other words,
if someone told me something, it was like they never told me.  It's
going to take a lot of work and a lot of time to discover how to get
around this memory/recall problem.  A couple of other things that seem
to help include doing it yourself (I'm referring to the person with the
memory problem) because you use so many sensory inputs when you do it
yourself. The other thing that seems to help is consistency.  I feel
like I'm turning into a fuddy duddy old lady, but it really helps if I
have certain places to put things, certain ways to do things, and so on.

I'm not saying the above suggestion will solve the problem.  The two
major things that helped me with my pitiful memory/recall was going to a
class that provided a lot of different learning tools (my doctor said
"use it or lose it") and starting on antidepressants.  The
anti-depressants were interesting because I hadn't realized how poor my
focus, concentration, had been. If you can't pay attention, it doesn't
sink in.

Now, everything I've talked about is assuming a person has control of
their seizures because trying to remember stuff that happens around or
during a seizure is almost impossible (I have complex partials).

If your husband's memory is that bad, you should know that it can be
dangerous for him to do certain things like cooking on a range top.
I've found that I can't leave the room without setting a timer or some
other reminder if I'm cooking, running water, etc., because I will
forget until I smell burned food or hear water running onto the floor.

One interesting story, many years ago I remember my brother-in-law being
brought into my mom's house by a nurse who was really irritated that my
brother-in-law couldn't remember where he lived (he did remember his
phone number, but his wife was at my mom's house).  He had had a seizure
at work and was taken to the hospital and was there for several hours.
He could remember my mom's address though, so the nurse drove him to my
mom's.  That nurse had a hold of my brother-in-law's elbow (like that
was going to keep him from falling, right).  My poor brother-in-law
looked absolutely worn out and I think he must have been uncomfortable
from that nurse's fingers in his elbow.  I don't understand why his
employer didn't give the ambulance crew information on his home address.
   Back then I didn't know I had epilepsy myself, but the incident
scared the heck out of me and still does.

Barb

Thanks for posting this. Darryl has been of help to me and to
others - and all here would be happy to help, if possible.
It must take GREAT patience to put up with Darryl's problems
(I think my partner is an angel, and he has to put up with FAR
less than it appears you do...;-), and losing your temper once
in a while may be a necessary "venting" for you. Do not feel
guilty about it - but, of course, try to find other outlets, if
possible (sorry, I'm full of "platitudes"...;-), and some way
afterward to reassure Darryl that your reaction was toward
an annoyance resulting from the condition, and not toward
Darryl himself. Good luck with all this, and we appreciate
your caring enough to ask for advice.
--
DR