Hi all, ok that sounds complicated. If anyone has psychiatriatic issues
or has heard of EPS then it might explain things a bit better. But
basically I need your opinion on temporal lobe epilepsy and whether it
could mimic EPS.
Ok, the deal is, I have a problem with... umm... weirdness. Involuntary
movements, tilting my head to the side, balance, numbness sometimes in
my lips, sometimes my eyes want to go different ways, sometimes I can't
sit still, sometimes I get really angry or sad just out of nowhere,
sometimes my tongue wants to fly out of my mouth, my fingers are
constantly doing some repetitive thing like making circles, I make
grimaces, I feel like I have a frog in my throat... even now I keep
looking left! There is nothing to the left! Man, I could just go on and
on.
It's annoying to say the least. It mimics EPS(s), which are serious
problems schizophrenics have, but I'm not schizophrenic. I do have
bipolar disorder but I do not take any of the medicine that are
supposed to cause these symptoms. In fact, when off the medicine I had
these symptoms. It could be EPS but that would be a first and even the
neuros who believe me don't know what to do.
My newest neuro said that some of this is associated with temporal lobe
epilepsy or temporal damage. Does any of this sound familiar to anyone
here? I'm just throwing it out here. One note: I stay conscious during
all these things and they are pretty damn annoying and sometimes quite
painful and constant. I take klonipin at a pretty high dose to relieve
them but we are trying topamax based on the temporal lobe deal.
I also found this link....
http://www.nlm.nih.gov/medlineplus/ency/article/001399.htm
Any ideas would be greatly appreciated.
Best,
Gavriel
G. - 24 Mar 2006 00:28 GMT
Hi. If you do any searches you could try Temporal lobe epilepsy, but
the newer term (that includes the former TLE) might have information
under Complex Partial Seizures. Note that after the basic onset of a
Simple Partial seizure (also called an Aura on some sites, and I was
looking above for symptoms of a distinctive Aura that usually signals a
Left or Right-based T.Lobe aura or seizure), we're not Aware of what
happens or what we do. You appear to be aware above? during what you
are having.
I posted a longer note called "Websites of use to newer people"
dated Jan.31 on this group at 947AM Eastern (247PM Universal time).
If you can find that post, it lists about 5 sites I've found useful,
and it's Followed with same title by about 5 other people adding sites
they have found of use with respect to Epilepsy. (I haven't
re-composed that note to merge the various addresses or I'd have put
it here.)
If you can't locate it, repost here, and I'll cut/paste it back into
this message thread, in pieces, as I haven't updated my note to include
the other new sites that others here added.
The US Ep. Foundation main site it at http://efa.org (I think) and 2
other sites were http://www.epilepsy.com and
http://www.epilepsyidaho.org/learn.htm that is an educational part of
the Idaho Ep. association site. (Once you're into the Idaho site, you
can travel around and see other educational parts -- see comment next
paragraph of what might help tell why I didn't think this sounded like
TLE.)
On the *last of those sites, if you don't find info. on the first 2
sites, look at "First Aid for Seizures" page in Idaho site. Note the
**Symptoms of the most common types of seizures. I don't think most of
what you described appear there.
Usually Temporal Lobe damage can produce a feeling of Deja Vu
(already seen) where you might feel you've said this before, been here
before or already had this experience (when you haven't). The Left
Temporal lobe can produce feelings of Jamais Vu (never seen) where your
own Place might feel like you're in a Stranger's house and are
extremely disoriented. *Usually after the szr. becomes stronger, past
that Aura phase, you aren't aware what you do except if someone
witnesses it and tells you later when you 'come back'.
Sometimes the Aura can include strange Tastes or Aromas distinctive
to Left or Right Temporal lobe damage. You didn't mention any of those
(tastes or aromas) above, so I don't know why your Neuro would think it
was Temporal Lobe-based, as those are quite distinctive and 'real' to
those of us who've had them.
Last (for now), have they run any EEGs or MRIs as part of above, that
makes the Neuro think what he did? Damage to one of the Temporal Lobes
would usually be visible on an MRI (Magnetic Resonance Image), and in
many cases EEG would show electrical problems there too. (Some people
might have a clean EEG, but the MRI would often show damage if there
was any in one of the T.Lobes. In fact the MRI would show all areas
where damage could exist.) G./
malamala - 24 Mar 2006 01:08 GMT
Thanks I'll check out the info.
I had an EEG once but I was majorly dosed up on Klonipin at the time (I
also take 400mg Lamictal) and I've heard the EEG won't always show
evidence nor will it accurately show evidence (my friend got put on
tegretol despite not having epilepsy). The MRI thing- well, $$$$...
unless I can find one on ebay :)
Yes I forgot to mention the deja/jamas vu and weird sensory things and
really weird strong sense of smell. I used to get that quite a bit but
not for years. But... you know, I've read quite a bit about auras and
seizures and it certainly does not fit the typical description of a
seizure. Especially the fact that it is constant and I am conscious
throughout. IF anything it would be some sort of damage.
I forgot to mention one very positive thing, at least for me. Since
starting the topamax I have "felt" a difference sensory wise. Since the
bipolar/meds I've felt very flat but after I started the topamax, I
have moments of ??? flashbacks. Brief memories. I can't describe it but
it's nice.
Is that confusing enough? No wonder my doctors are either fascinated or
want me out as soon as possible :)
This has been an on-going frustration for years now and the worst is
this:
there is not enough connection between neurology and psychiatry. This
is more than annoying because a) bipolar is treated with AE drugs and
some speculate it is more related to epilepsy; b) insurance companies
can deny you coverage for AE drugs prescribed by psychiatrists so you
need a neuro; c) there is little communication between the two.
Gavriel
G. - 25 Mar 2006 23:31 GMT
> Thanks I'll check out the info.
>
[quoted text clipped - 25 lines]
> need a neuro; c) there is little communication between the two.
> Gavriel
You don't have a way to sign a "Release of Information" so that the
one Medico can send some parts of your file to the other? That way you
could pick the Dr. you liked better and have the main stuff sent to
him, so they have a cluster of ALL your information.
Wrt. the $$$ of the MRI, I live in Canada, so it's included in our
healthcare. I don't know how much they cost, since it's already paid
for by my Income Tax... G./