Yes, they reduced me quite quickly off my medication, but I didn't get any
seizures until I was completely off.
> Hi there
>
[quoted text clipped - 16 lines]
> Massimo,
> Switzerland
> Hi there
> I went for a Video EEG last week to check whether I have epileptic
[quoted text clipped - 14 lines]
> Massimo,
> Switzerland
Which medications are you using? Names or generic. There might be others
around who've used it or have experiences they can share. Sometimes a
particular medication can indicate which of the main 4-5 seizure type you
might be having.
With some of them, there can be risk from abruptly stopping them --
Tegretol (Carbamazepine) is one, but there are others too. Usually if they
think your seizure type might be triggered that way, they might reduce or
stop the pills while you're in hospital.
Several people in 'the neighbourhood' had their meds either reduced or
left the same. Apparently several of the szr. types produce a measurable
effect on the EEG equipment, even if they stay at their prescibed doses.
Another disadvantage with the EEG unfortunately, is you usually have to
be 'wired up' during the seizure event, for the equipment to record it. We
had a few people here a year or so ago who had to be taken off medications
but kept in hospital for a period until they finally had an event 'recorded'
by the equipment. IF they can locate where the szr. originates, and it's
severity, that helps them pick a targeted medication and a strength that
would work for you. More of the newer medications are specialized for a
particular seizure type.
Some of the 'regulars' who might have more experience or websites with
information may be away already on holidays. Even if you don't get some
answers in the next day or 2, stick around as they will reply if you repost
between Dec. 26 and year end, or 'next year' (January). I know a few of
the 'older people' are already on the road for Christmas, and they might
have links or experiences of use to you.
Don't give up on us -- and your older posts likely stay up on some of
the servers of people in e.g. Australia and New Zealand as well as Europe,
so you could get more responses yet. G./
P.S. Although my Temporal Lobe seizures didn't start until 1993, my
original encephalitis I had in 1979, the Doctor said my 'EEG waves' were
'all over the map' on the eeg and they didn't know how I was able to
function. That was from the Encephalitis-- when the seizures actually
started in 1993 (14 years later), I was 'away' 2-3 times for 3-8 days each
time until they found the full 'seizure focus' and had a medication that
kept me out of 'the twilight zone' (I called it that, since while away I had
no idea where or who I was, and needed assistance to find my own hospital
room. I was told that later.)
Keep reading us. Even if you don't hear for the next week, there are
about 40+? people who read this group 1-2x a week, if not daily. Someone
will turn up who's experienced similar experiences to your's and can give
you benefit of their experiences. Best wishes in the meantime. (Also we
have people posting from about 10? timezones, so even if it wasn't near
Christmas, sometimes responses might come back 2-3 days after an initial
posting.) /
Massimo Scola - 21 Dec 2004 11:15 GMT
> Which medications are you using? Names or generic. There might be others
> around who've used it or have experiences they can share. Sometimes a
[quoted text clipped - 43 lines]
> Christmas, sometimes responses might come back 2-3 days after an initial
> posting.) /
I'm currently taking Topamax (2x100mg) and Lamictal (2x250mg).
My seizures are triggered by lack of sleep (at least two times in a row) and
surely by not taking the medication. If not taking the medication doesn't
help, maybe sleep depreviation for a few days would ..
I was discharged from hospital because apparently my EEG was OK (even though
every time I go to my neurologist in the city something shows up on the
right side).
I would assume that something would show up on the EEG if I were to have a
seizure, whether I have epilepsy or suffer from non-epileptic seizures
(that's why I was sent to the hospital)?
Well .. the whole thing is really annoying. I really hope that they find out
whether I have epilepsy or whether I have psychogenic seizures..
Massimo
(in Lucerne, Switzerland)
Satch - 22 Dec 2004 18:09 GMT
> Well .. the whole thing is really annoying. I really hope that they find
> out
> whether I have epilepsy or whether I have psychogenic seizures..
Some of the guys here are really fighting the existence of "psychogenic
seizures". That is why I said that the wording of "fake" sounds a little bit
negative though you later explained the context of what the doctor meant (I
understand know what he meant to say). I am a little bit reluctant to fight
the existence of these kind of seizures because there might be cases where
psychological causes can trigger non-epileptic seizures -let's say I am not
specialised in that area. However, I always believed that when something
does get recorded on EEG machinery (no matther what that is), then you
really cannot tell you are having PPES (psychogenic pseudo-epileptic
seizures (PPES) anymore, can you?
Maybe you indeed need to get of that medication or maybe you need to get
some nice nurses in the hospital who can make sure you suffer from sleep
depreviation while you are wired up to the machine artillery (I would go for
the nurses, but hey, that is just me...hehehe).
Regarding PPES:
http://www.epilepsyfoundation.org/answerplace/Medical/seizures/types/nonepilepti
c/weinonepilepsy.cfm

Signature
Thanks.
Marco
The Netherlands
> But they didn't take me off medication so I stayed in that stupid bed for
> five days (almost all day) without getting any seizures. Did they take you
[quoted text clipped - 3 lines]
> The explanation for not taking off medication the medication was that "I
> would get a seizure anyway and that the seizure would be a 'fake seizure'"
I can understand your frustration...it is not nice to stay in a hospital for
such a long time and then go away again with empty hands so to speak!
I have not had any video EEG excersise as my one hour EEG showed the
patterns my neurologist needed to conclude the diagnose period. Sometimes
they do the video EEG thing and then the nurses make sure you do not get any
sleep by making sure you are awake -playing games, etc. That should trigger
a seizure. At that point they can easily see where the seizure focus is. Of
course, getting of medication also could trigger a seizure. There are people
out there that get seizures only once per year so even with a five days EEG
excersise, you won't see any epileptic activity. So, the explanation that
you would get a seizure does not have to be true. The wording "fake" also
sounds a little bit negative. Doctors and nurses should avoid these kind of
words especially when they already found something on another EEG.
So, what is the plan? Are you getting a mobile EEG to increase the
monitoring period? Are they going to do another video EEG excersise while
putting you off medication or making sure you won't get any sleep?

Signature
Thanks.
Marco
The Netherlands
Massimo Scola - 22 Dec 2004 10:57 GMT
> I have not had any video EEG excersise as my one hour EEG showed the
> patterns my neurologist needed to conclude the diagnose period. Sometimes
[quoted text clipped - 17 lines]
> monitoring period? Are they going to do another video EEG excersise while
> putting you off medication or making sure you won't get any sleep?
Hi Marco
I spoke with my neurologist he and he wasn't happy either. He might send me
to a special epilepsy center (not to the university hospital I went to) near
Zurich. But he will wait for the report from the hospital first.
This time, I will insist that I will be taken off medication .. even if it
will take more time.
I hope that that the professors argument that, anyone would get fits if they
were taking anticonvulstants and were then taken off , they would get a fit,
isn't true .. That what was the reason I wasn't taken off medication...
I have been told that I have temporal-lobe epilepsy over six years ago; I
have tried so many medications, some have made me fat, some have made me
dumb (dumba-a-max), and some made me have diblopia .. so I really want to
know once and for all what I have.
I will post another question to this forum regarding the so called complex
partial seizures I have for general discussion ..
Agains, thanks for replying to my posting.
Massimo