New heh? Me thinks ya ain't the only one on this block, welcome.

Yea, kind of that way with me too........ Probably annoys everyone that
has it don't ya think :)

I tend to have one seizure a week at the min but they

A pharmachist heh???

I would say "sure" they "might" help. But me, like most, if not all, on
this group aren't really that knowledgable to say "for sure" what a
medication will or will not eventually do.
Have you considered the opinion of your doctor? What did she/he say?

 I really dont know much about epilepsy and its

Epilepsy itself causes depression.
Read a couple of recent past postings of "gaross, mary, or dave" to find
more epilepsy links and info than you will ever need.
And take it from an old man, the brain NEVER works like it used to :)

 good luck
owlvee

*** I sent you a list of sites, although you can probably look up the meds.
at the pharmacy.  Carbamazepine CR is used for our Temporal Lobe based
Seizures.   If you do any searches or at that efa site, look at both
Temporal Lobe seizures (the older term) , or Complex Partial seizures (a
newer 20 year? ago term that now includes the olde TLE within it).  You
likely know but Carbamazepine is often called Tegretol  (CR in our case), so
any searches you might want to look under both routes, as posts might call
it the latter, more often than the Generic Name.   So look at both on any
searches.

     You likely know whether the tumour was in Right or Left side, so the
symptoms you'll see are different wrt. the aura at onset or during a simple
partial only part of the szr. if it doesn't go on to a full Complex Partial.
Right side produces a false taste or odour that's sour /lemony, and a
feeling of Deja Vu.  Left side T.Lobe firing produces an Eggy or Foul taste
or aroma (I've never had),  and a Jamais Vu feeling where your own place
might feel like a stranger's.

    The Memory thing is because of damage to the Temporal lobe -- it
affects the short term learning and memory functions.   The T.Lobes used to
be called The Seat of the Soul, also, since they're where we store 'who we
are' in.   So damage there or a seizure can produce disorientation and loss
of  awareness of where we are or what we do -- until we come out, or
collapse.   (Mine were the latter usually before I was controlled.)
   If your's are extreme and still not fully controlled,  you might want to
consider or ask the Dr. about whether you should get a Medic Alert Bracelet.
Several of the extreme TL Seizures I had in 1993-6, I'd often wake up in
Emerg. or a Hospital many hours after onset -- a couple of times it was
Days.

    Re- Tegretol CR -- you should know, but take it as often as the Dr.
said, and do not Skip or Miss doses, or there's risk of seizures that could
be worse than what you're trying to control.  Do *Not use Grapefruit or its
Juice while you are using Tegretol -- other juices are ok, but G.F. (one of
the acids) messes up the blood levels of the Tegretol.

   Take the Tegretol with Milk, Food or Juice.   Do not use any Upset
stomach remedies or other medications without showing them to the Pharmacist
or asking your Doctor.

   Avoid or be careful with Alcohol.   It affects blood levels of Tegretol
and has a Non-linear effect -- where 1 drink might feel like 1, 2 like 2.5,
3 like 4 etc.   It likely also flushes the blood levels down faster too, so
just aggravates what we're trying to control.

*** The mood effects can come from medication (if you're not at target dose
yet), or just because the Temporal Lobes influence our emotions as well as
our short term memory.   Depending on how the tumour affected things, like
me you might just have to adapt and develop workarounds past the parts of
the memory things that others might not have to do.   I keep a log of
medications as I use them to prevent missing doses, or taking 2 by mistake.
Things I need to know or remember I have to write down.  Once I've read them
a number of times, some of the memory stuff might improve.  When it doesn't,
just accept it as where you are at that point.
   One of the worst things for learning new things or remembering other
things, I found, is to be still beating yourself up for what you forgot an
hour ago.  Since that also affects emotions, that interacts with the
Temporal Lobe activity and is like trying to read by Strobe light.  It's
better to try relax and learn what you can, or develop workarounds if
necessary like I suggested above.
   There are about 5 or 6 of us with TLE around here.  Some might be away,
others might show up over the weekend.  Check the message threads for other
responses over next ~4 days or so.    If you have any new questions or
responses to what anyone posts, just use reply to group, remove parts of
message that aren't needed, and someone of us will get back to you.    We
have people posting here from about 6-7 countries at the moment, and across
about 12 timezones.   That's why some responses may come in over 24-48 hours
after you do a post.
   I hope we can be of help and save you some of our learning curves we had
to go through.   G./

Hi Rob,

On the subject of AEDs, a combination of Dilantin and Keppra has been
reasonably effective in controlling seizures I have as a consequence of a
temporal tumor in my left lobe the size of a large chicken egg discovered 1
1/2 years ago.  I had a grand mal on the day of discovery (at age 47) and
periodic simple partial seizures (SPS) since that primarily affect the
senses.  The addition of Keppra significantly reduced my SPS and improved
concentration that was negatively impacted by the Dilantin.  The great thing
about Keppra is it doesn't interact with most medications and absorbtion
isn't impacted by food so you can take it virtually any time.  The drug is
reported to work best to control focal partial seizures when used as an
adjunct to a primary AED such as Dilantin.

Changing subject, what name did your biopsy assign to your tumor and what is
its current size?  Reason I'm asking is the term "benign" can be misleading
when applied to brain tumors as depending on type they have the nasty habit
of degrading over time (growth and invasion into surrounding tissue
accelarates).

Did you have memory deficits "before" taking AED medication?  If so, was it
a gradual or sudden onset?  Did you perceive any deficits as a result of
your biopsy?  The temporal region is delicate so a simple biopsy could cause
memory/speech deficits if tumor is not assessible at brain's exterior.  Did
you have a needle or craniotomy biopsy?

Regards, Bill

"Robpharm" <tazztv@hotmail.com> wrote in message

Hello Rob,

I'm in Leeds, Yorkshire.

In 1992 I was very unhappy, I had all sorts of odd emotions and feelings, I
couldn't concentrate, my memory was poor and my hands shook - which didn't
help because I worked for a photographer and did a lot of printing and
re-touching. My boss was cross because he said I wasn't concentrating, my
husband and son said I was being unreasonable .. it was a very unhappy time.

Then I had a grand mal in my sleep. I'd also been having what I now know to
be other minor manifestations of epilepsy.

After the sleep incident I went to the GP who sent me to a neurologist. He
asked what I thought was wrong with me and, although I didn't and didn't
know where the word came from, I said , "tumour". He said there was no
evidence of that but he'd put me through a scan to make me happy.

The tumour showed up.

The neurologist contacted me the same day and immediately afterwards so did
the surgeon, I had the tumour out the day after talking to the surgeon.
apart from a very slight dysphasia and not a brilliant memory I'm not
absolutely fine and don't take any medication. I do have approximately
monthly deja episodes but they have never, ever, been a precursor of a Big
Fit.

Now, it's important to stress that that was MY experience. I've realised in
the years since then that all cases are different so please don't think that
yours will match mine - and don't cite it in discussions with your medics.

What I believe my story does show, in contrast with yours, is that we have
had different responses to our condition and that perhaps you might benefit
from a second opinion - which is your right.

You say that someone you consulted admitted that s/he doesn't know much
about epilepsy, I believe that this is common. What you need is someone who
DOES know about it. You must insist on having the best advice, you are
entitled to it.

However, it might well be that surgery isn't the best way forward at this
point so don't raise your hopes too much. What I know is the misery of not
being able to drive and having to take medication quite apart from other
symptoms, and I knew that in my case it would - and did - come to an end. At
the moment you don't.

For your own peace of mind you MUST seek further advice. It won't go away by
itself. If the tumour is easily accessed, e.g. a meningioma, and benign it
should be easy to solve your problems, I'd have thought.

But I'm not a neurosurgeon ... :-(

I do hope you can take courage and find further professional advice. Please
let us know.

Mary

Hope this helps! Grand Mal at age 15. 1st of thousands of partial complex
seizures at 17. 2nd ever GM at 25. Tests never revealed anything until one
CT at age 26 uncovered a quarter-sized AVM (basically a blood vessel tumor)
in my right temporal lobe. I, too, had to weigh the option of surgery, and
opted to have the surgery. I was left with perfect long term memory, and
seriously impaired short term memory. A brilliant doctor in Jackson,
Mississippi, taught me end runs around all my deficits (at least
surgically related ones!). At age 43 I decided an attorney I wanted to be,
and at age 48 I walked away with my degree! Get another opinion! I am new
at this too, and don't mean to ramble.

HI;

Don't know if this will help you at all, but here goes anyway.  

I never had memory problems prior to my surgery, only horrific pain and
pressure pain on the brain. And though this may not help you with the memory
thing, the epilepy I can comment on.  

I have had 2 osteoma brain tumours, the first when I was sweet 21...1977.
The second being in 1992. It was the same tumour, grown back.  My tumours are
like that, they can pop up anywhere really. This surgery involved the removal
of a large part of my skull on the right temporal lobe. I have a hole in my
head, 2 and a half inches in diamiter. That part of my brain is protected
only by skin. No plate, nothing!  It left me with temporal lobe epilepsy.  

It took more than 5 years to get it under control. The tumour put a lot of
pressure onto my brain (yep, I have one, I've seen it a few times now!!)
anyway, the epilepsy...the reason for my epilepsy is down to the tumour, it
put that much pressure on my brain it damaged some cells.  It also pierced
the membrain around the temporal lobe and that damage added more problems.  

I went onto carbamazapine after the surgery, however, it 'DID' affect my
memory in a way cos it made me dozy, ya know?  I couldnt control my epilepsy
with carb, I hated the way they made me feel...to me, it made them worse! I
had more and more of them!   Carb was awful, made me weird, like drugged up,
ya know what I mean?  Sort of spaced out, malfunctioning...lmao  3 years
after the op, and 3 years with the epilepsy...He weaned me off the carb, and
at the same time, weaned me onto epilum...The epilum made the fits a million
times worse!  After a long while I saw another surgeon, he was horrifed at
the dose of epilum I was on, and the fits I was having. So he weaned me off
that, and onto lamotragine; and whalla, this controlled my fits.  It took a
while, but they are under control as I type, and have been for almost 8 years
now.  I think its a case of trial and error, I really do...

But I will add this; the epilepsy was my problem, I hate it, I hate the word,
and I was in denial for years!  It would become controlled, then uncontrolled,
controlled, uncontrolled, etc; that cause me to be down and sad.  Cos I hated
it.  It wasnt the brain tumours that caused the problem.  It affected my head,
got into my head, you know, messed me up a tad!  I became depressed and
afraid to go out for fear of fitting and smashing my head, not a good idea.
Epilepsy ticked me off big time!!!  Having the tumour removed was a walk in
the park compared to the fits!  

Epilepsy is a scary world to live in.  It really is.  The pressure on my
brain caused the epilepsy, who knows, maybe had I had the tumour removed
earlier the epilepsy may not have been so bad.  All I do know is, that tumour
had to go.  I dont know why they have left yours, they must have their
reasons. Unfortunately I was told yesterday that I have another tumour, not
on the brain, but growing down into my mouth through the pallet (roof of the
mouth) and of course, upwards too!  All benign, but all fatal if not removed.
I knew it was there, just hoped it wasnt another one, but as luck would have
it, it is. I have to have it removed in 3 weeks.  

That I could deal with, the epilepsy, not so, but I did in the end.  But you
know, you have to try all options medication wise!  What works for one, wont
work for the other!  

Question for you;

Who is it that is handling the epilepsy/medication, is it your GP, or a
neurologist?  Because if I were you, that would be my next move! I believe
that only the neuro docs know what they are doing concerning epilepsy, drugs
and control.

Like I say, dont know if any of this helps you, but I thought I would share
it anyway, in case it does!

Good luck!

Catherine

Hi rob im going through something myself its not like your situation but im
sorry to hear
you should apply for disability and rest.I think until you figure it out so
you dont have to much stress right now god bless you your in my prayer tonite.
Work can be alot of pressure anyway these days