Hello Tim --

I am sorry to hear that your seizures went from only occuring at
bedtime, to occuring during the day. When I had my seizures it was
just the opposite, I had them during the day, and when I had a bad
day, I would go to sleep, thinking that was my safe space. It was
very frustrating and depressing when I lost my safe space, as I
referred to it.

I also went through years, like 22, just to be diagnosed with
whatever it was, and finally I was told I had Temporal Lobe Epilepsy,
which later became known as Petit Mal, and now Simple Partial Complex
seizures. I ws elated at that point, just to have a name for my
symptoms. My next feat was to control them. I was put on numerous
cocktails of drugs, which only lasted for 10 months and the seizures
were back. Then it was back to square one and see what ws next.

I went through numerous long term monitoring EEG with numerous other
tests at several different hospitals. (EEG, sphenoidal electrodes,
pharangeal electrodes, sleep deprived; MRI, CT) and I am sure there
are others ones out there today, I haven't had anything but a routine
EEG for the last 10 years. The one test which finally helped in
finding the focal point of where my seizures were coming from was a
long term monitoring EEG with video, audio and Shenoidal Electrodes.
At that point, 12 years after being diagnosed with epilepsy, I was
told I was a candidate for surgery. I had the surgery in July 1994
and have been seizure free since.

Was your attempt to control your seizures this past year (14 months)
with the guidance of your doctor, or did you decide to do this on
your own? If on your own, did you tell your doctor what you did? I
believe it is very important to be open and honest with your
neurologist (or any doctor) to get the proper treatment.


Also, you said that you were in the hocpital for 6 days to pinpoint
the focal point, but you did not explain what the tests consisted of,
so it is kinda difficult to give advice. Kinda like not telling the
doctor the whole story and only being treated for part of it. If,
when you go to see your doctor for the followup of your hospital, and
they did not find the focal point, ask about other tests they can do
to see further in your brain. Routine EEG's only read the surface
area. Ask what your other options are, because there are many out
there. It may take some invasive procedures, but you have to decide
how badly do you want to know, and what your options would be.

As for stress, that is a very common trigger point for seizures with
many people. There are numerous way of working with stress with
alternative treatmets, such as yoga, you should discuss this with
your doctor also. If you doctor does not give you options of
alternative treatments, or explain more options if needed, I would
consider a new doctor. There are many neurologists out there who do
nto step out of the box and look at alternative treatments, and that
does not help the patient.

I hope this helps and wish you good luck at your doctors
appointment.

Best Wishes ---

Jody