Some neuros do want an EEG done others do not. A normal EEG does not
always mean that seizures are not possible. It is considered ok to try
a slow wean without an eeg or right after.

Yes, I think it is also standard to go back on medications if you have
a seizure while reducing or when you are off. My daughter was weaned
over a couple of months last year this way. She was not on much
medication and had only been on it about 15 months, so it was an easier
wean than for someone who has been on it for years.

I wish you all the best as you wait to see if this is possible.  I
think the standard reasoning for not trying a wean if this one fails is
that failing to stay seizures free is an indicator that it would not be
successfully done.

Hoping that you will be able to go off and stay off. It is great that
you have gone so long seizure free!!

Take care!
Ginny

I only had EEGs at onset in ~1993 and possibly 1994. MRI was done at
onset to confirm damage at Right Temporal Lobe (from Encephalitis I had
in 1979).  We changed pills from Dilantin to Tegretol when I had more
seizures, and monitored my success by whether or not I had more CP
seizures and how often.  Over a period of about 2-3 years we adjusted
those doses up, then down when a newer (2nd) med. was added. (Bloodwork
was done during that time, to check for proper Dilantin then Tegretol
levels.)
  Since I knew what to watch for (auras etc.) I only saw the Neuro
then if I started to lose seizure control.   After a period, my levels
became stable and I've been at same  level now for about 8+ years (last
visit to him mentioned on another thread was 1998). That was also the
last time I had a full seizure that required an Ambulance.
  For my type, and with my pills, I assume I'll be at this dose level
for the duration.  As they control the CP seizures I used to get at
inital rate of 2-3 a month, I'd assume they are now at a stable level
for my condition and metabolism, so am now under control for my type. I
assume with my particular damage from the encephalitis, that removing
my pills wouldn't be an option.
 But if your Dr. has looked at your case and suggested you might be
able to remove them, it would be done *Slowly and they'd watch for any
possible onset or auras etc. that might suggest that proceeding further
wouldn't be advised. Keep us posted if you decide to proceed.  I'm sure
there are others who either have experience with your type, or would
want to know how you are progressing.  There have been a few others who
were able to reduce or remove their pills.   I'm not one of them, but
as Howdy says "We're all different", so you might have a chance to
break free.  G./
(I was glad to see you were still around too, after my ISP decided
they'd pull Support for Newsgroups as part of their new improved :-<
customer service... )

Hi Marco, when did you become Satch?  Is this the same Marco we have
been in touch with in the past?

All I can tell you is my own experience.  But in my case I am seeing a
new doctor.  It had been 16 years since my last EEG and MRI and since we
were considering removing my meds we decided to go ahead with new tests
first, so I had an EEG and MRI last month.  But I haven't been feeling
well since then (may have gotten a virus) and I have some other medical
tests not related to epilepsy that I will get out of the way before
starting on the new drug therapy.  I will start on a new drug before
slowly going off phenobarbital.  The doctor said that if I didn't have a
back up drug, the possibility of triggering a seizure was high while
going off phenobarbital, especially since I have been taking this drug
for 30 years.

Take care,
Julie

Howdy Marco!

My reaction is:

If you are taking medications and are seizure free, why in the world
would you want to tamper with something that works??

IF IT AIN'T BROKE -- DON'T FIX IT!!!

I would tend to believe that:

The reason you are seizure free is BECAUSE of your medications

rather than assume:

Since you haven't had any seizures there is NO LONGER ANY NEED TO TAKE
medications.