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Medical Forum / Diseases and Disorders / Epilepsy / February 2008

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Just been told I have seizures

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Jason - 30 Jul 2007 01:53 GMT
Hey Group,

This is the first time I have posted here. After years of strange
attacks, I've been told by my Doctor that I have "seizure disorder."

I have mixed feelings abot it. Not sure if I believe it or not. But
here is what happens.

It always starts the same way. I get a burning sensation in the back
of my neck and upper back. Sometimes, for some strange reason, I
smell strong bug spray. Than comes the lightheaded, almost floating
feeling. Lots of visual distorations. I get sick, feel like I'm going
to pass-out. Next is just blank. No memory of the peak of the attack,
or just bits of memory that contradicts what my wife sees when these
happen. The peak of these attacks last 3 to 5 minutes. The longest
one lasted about 10. After the attack is over, I'm confused and have
fatigue.

My Doctor suspects Complex Partial Seizures. What do you guys think?

Thanks,
Jason
G. - 30 Jul 2007 03:52 GMT
> Hey Group,
>
[quoted text clipped - 18 lines]
> Thanks,
> Jason

Strong acrid odour (aura) is usually a marker for Left Temporal Lobe
seizure focus (where the szr starts from).  Newer term for Temporal
lobe szrs. is now Complex Partial if you do any searches.   Several of
the websites or search areas still keep Temporal Lobe seizures as well
as the CP ones.
   Try look at the U.S. Ep. foundation site -- http://efa.org  and
see if there's any detail there that might help. Also if you were
prescribed medications yet, there's a Glossary there that will often
tell what type of szrs. the medication is typically targeted for.
  (My szrs. are Right T.Lobe so I started with Dilantin, then
Tegretol CR (controlled release) and Clobazam (Frisium).   Left T.
Lobe might use some different medications, as I'm not familiar with
that area.)
   Did the Dr. suggest whether you should get a Medic Alert or
similar bracelet?  If these happen without a lot of warning or you're
disoriented while they happen that would allow Doctors or respondents
to know 1) what's happening, and 2) what medications you use so they
don't give you something that would conflict with it.   The file also
keeps a list of up to 3 Medical (Doctor) contact numbers, plus up to 3
Family contacts.   It's a small price to pay for some extra insurance
or peace of mind if these are not controlled yet.   (About $40 one
time cost for the bracelet, other amounts later if you want are tax
deductible in some countries.  You don't usually have to pay again
when the annual 'update your records'  notice is sent out-- that's
just to make sure you didn't change medications or doctors and forgot
to let them know for their files.)    G./
 (I'll see if I can find an older post I did with about 5 other
websites and post it separately below.   There is more detail on First
Aid plus other information on szr. types than what's just on the EFA
site.  )
Sofia - 31 Jul 2007 23:14 GMT
> Try look at the U.S. Ep. foundation site -- http://efa.org  and
> see if there's any detail there that might help. Also if you were
[quoted text clipped - 6 lines]
> Did the Dr. suggest whether you should get a Medic Alert or
> similar bracelet?

Strange that, I didn't know there actually was a difference between the
two personally!

My neurologist even suggested I wore a type of choker type thingy around
my neck (a little like this bracelet thingy you describe) 24 hours a
day to study my TC's and Tonic's mostly, and I don't even have auras
during any of my seizures - I declined though, as I felt it would make
me feel like a doggy with a lead on!!

Sofie
Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Ron Laffey - 02 Aug 2007 02:02 GMT
> My neurologist even suggested I wore a type of choker type thingy around
> my neck (a little like this bracelet thingy you describe) 24 hours a
[quoted text clipped - 3 lines]
>
> Sofie

One day I had a seizure while waiting to take the bus home from college.
   I would normally walk to my house, but being on the other side of
the city, I (so I'm told) attempted to walk into an older person's home
and she called the police.

Because I ignored the officer and worked  to open the front door, he had
to use force to take control of me(have you ever tried to control
someone having a petit mal?). Luckily, he saw my necklace and completely
changed his method. For that reason, there were no bruises, on either of
 us.

Don't compare it to a doggy with a lead on, but as an unmarked car with
a siren that is only used when necessary.

Ron
Sofia - 05 Aug 2007 01:03 GMT
Hi Ron, nice meeting you!

> One day I had a seizure while waiting to take the bus home from
> college. I would normally walk to my house, but being on the other
> side of the city, I (so I'm told) attempted to walk into an older
> person's home and she called the police.

Ouch - that really is unfortunate. The only times I go walkies doing
naughty things I shouldn't are usually during my Complex Partials.
During my petit-mals I usually just stand/sit rigidly and stare into
space with hubby close by me, but we're all different I suppose.  

> Because I ignored the officer and worked  to open the front door, he
> had to use force to take control of me(have you ever tried to control
> someone having a petit mal?). Luckily, he saw my necklace and
> completely changed his method. For that reason, there were no bruises,
> on either of us.

I'm surprised this policeman recognised it as a disabled persons
necklace - it's a very new thing here in England, I'd never even heard
of it myself till my neuro introduced it to me at our last meeting to
monitor my seizures!

Maybe I'm one of the lucky people that seems to go everywhere now with
my husband by my side when we go out, so I never ever end up trying to
walk into anybody else's home without him knowing about it - it's a
shame you didn't have a friend or carer perhaps with you on that day
the police came!

Maybe the reason I'm comparing it to a doggy lead and not an unmarked
car with a siren, is the same reason that I've never heard of it till
recently - perhaps I should get to know a little more about it before I
consult my neuro again!!

Sofie
Signature

Please visit my deviantART page: http://sofen.deviantart.com/

J. T. Laurie - 09 Aug 2007 12:26 GMT
I'd love to get a necklace but I'm not allowed. even though a very competent
doc diagnosed me with epilepsy and even upped my meds a little to
accomodate, the family said he was wrong and that they wouldn't get the
medication redone to accomodate the new dosages. bastard!

> Hi Ron, nice meeting you!
>
[quoted text clipped - 31 lines]
>
> Sofie
G. - 09 Aug 2007 19:16 GMT
> I'd love to get a necklace but I'm not allowed. even though a very competent
> doc diagnosed me with epilepsy and even upped my meds a little to
> accomodate, the family said he was wrong and that they wouldn't get the
> medication redone to accomodate the new dosages. bastard!"Sofia"
**G* I don't understand above ??  Your Dr. prescribed (or suggested) a
pill that **could control your Seizures, but your *family have medical
training?   Before my CPs were controlled I got on buses I didn't
belong on, walked into traffic (on foot) while there were cars coming,
and threw a Security Guard about 5 feet (I'm told) like he was a rag
doll.   Why wouldn't I want to get that controlled before I injure
myself or others?    (It is now, and has been since 1997.  I wouldn't
relive 1993-6 for *anything.)   Just my opinion.   G./   (Comment at
end too.)

<pinkmonster2000REM...@ALLCAPSyahoo.com> wrote in message
> news:46b513c5$0$24760$da0feed9@news.zen.co.uk...
>
[quoted text clipped - 33 lines]
> > Sofie
> > --

G.--  Another thing I forgot on my Reply above to Sofie, is the Medic
Alert computer file that Medics can call Collect, lists what Pills you
are using (not doses as those can change).  *That way a Medic doesn't
give you something to 'fix you'  that conflicts with Pills you are
using.
Sofia - 10 Aug 2007 02:06 GMT
> Before my CPs were controlled I got on buses I didn't
> belong on, walked into traffic (on foot) while there were cars coming,
> and threw a Security Guard about 5 feet (I'm told) like he was a rag
> doll.

Nice to hear somebody's gotten rid of the blasted nuisances!!

If I'm out with hubby walking down the street and he just turns his back
for one second I've had one and bumped straight into lamposts or walked
into the middle of streets and been knocked over, and I can't count how
much trash I've taken from supermarket shelves and stuffed into my
pockets that neither of us knew about till we got home!!

Sofie
Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Rev21-4 - 11 Feb 2008 21:37 GMT
I experience strange pungent smells.  Sometimes like sulpher.  Sometimes
lovely scents, like fresh roses!  I like the roses much better.

--
Message posted using http://www.talkaboutsupport.com/group/alt.support.epilepsy/
More information at http://www.talkaboutsupport.com/faq.html
G. - 12 Feb 2008 05:35 GMT
> I experience strange pungent smells.  Sometimes like sulpher.  Sometimes
> lovely scents, like fresh roses!  I like the roses much better.
> --
> Message posted using http://www.talkaboutsupport.com/group/alt.support.epilepsy/
> More information at http://www.talkaboutsupport.com/faq.html

The pungent (sulphur-like?) aromas are supposed to be the aura of a
Left Temporal Lobe seizure focus (where it starts).   Right Temporal
Lobe ones are often lemony or sour with matching taste. (Those are
ones I had before I got control of my szrs. I don't miss that lemon
taste at all, but avoid even 'normal' drinks that are sour like that
now.). G./
G. - 02 Aug 2007 04:57 GMT
On Jul 31, 6:14 pm, Sofia <pinkmonster2000REM...@ALLCAPSyahoo.com>
wrote:
> > Try look at the U.S. Ep. foundation site --http://efa.org and
> > see if there's any detail there that might help. Also if you were
[quoted text clipped - 16 lines]
> me feel like a doggy with a lead on!!
> Sofie
 For those of us who get auras and they're from T.Lobes, the right
side Seizure Focus produces a Deja Vu sensation and taste or aroma
like lemon or sourness.  Left T.Lobe (I don't have) supposedly
produces a Jamais Vu aura (where your own place might feel like a
stranger's house), and the Aura is Eggy or Sulphur-like taste or
aroma.
  Those (when they occur) are a non-invasive way of telling which
T.Lobe a szr. starts from. Some people here (a few years ago)  had
Complex Partials or Tonic Clonics that started from either (both)
sides, so they experienced both types, sometimes one, sometimes the
other. Sometimes too, if the szrs. aren't controlled, they can
generalize to grand mal or other type of szrs. once they progress.
(Before I got controlled when mine did that I'd usually lose
consciousness and wake up on the floor or in hospital.  That's how I
could tell that some of the pills were giving more complete control,
as they moved to Auras (like above), but didn't progress to stronger
szr. type.
 (The Temporal lobes are like the short-term memory buffer of the
brain. New learning or what we read goes there first, then gets moved
to other areas for long term storage or discarded. Damage there (like
I have) can affect reading and remembering what was read, or new
learning. I noticed it most (before control, aging) learning how to
use this (*&^  computer when the screen would move on, and I'd not
recall what was on the screen (window) I had just left.)     G./
G. - 09 Aug 2007 19:04 GMT
On Jul 31, 6:14 pm, Sofia <pinkmonster2000REM...@ALLCAPSyahoo.com>
wrote:
> > Try look at the U.S. Ep. foundation site --http://efa.org and
> > see if there's any detail there that might help. Also if you were
[quoted text clipped - 18 lines]
> --
> Please visit my deviantART page:http://sofen.deviantart.com/

 I don't know what that would be, but I'd assume some kind of
recorder instrument? to measure blood pressure or electrical firings
as any of your szrs. started?   That would have been something (he
should have explained?) that you'd only wear for 1-2 weeks to decode
the frequency and szr. type that might have been happening-- similar
to a portable EEG.
  (They usually want to know what the szr. type is as the type of
treatment and pills that would work for 1 szr. type won't necessarily
be any help for another type.  You could have worn a high collar
sweater or other thing while the test was running.  I hadn't heard of
that type of instrument over here/ Canada, so might be something
new. )

  Medic Alert in North America sell either necklaces or wrist
bracelet (I use) that list their Toll Free number for Medics to call,
with the Member number.  Their computer file then has Emergency Family
contacts, Doctors who are treating you and numbers, and more details.
The bracelet *I use says Seizure Disorder, Allergic to Seafood, Blood
Type xx, and the toll free Medic Alert number.  (Doctors can call
*collect from *anywhere in the world, Australia, China, UK, Italy etc.
no matter where you are, and get 24 hour access to your file.  For
$35. one time cost, it's pretty cheap insurance for people who have
various Chronic Illnesses that could affect their consciousness --
heart conditions, epilepsy, and other medical conditions.
  (Lately they also sell a cloth Sports Wrist Band (for kids in one
of 4 colours) that has the bracelet imbedded in it, so it looks like a
Sweat Band to other kids.   I only know it's for kids since I wanted a
Blue one, and she told me ~4 years ago they don't come in Adult
size. :-<  )
 Both the Necklace and Wristband have a Safety Link on each side that
will Pop Free if the bracelet or necklace were to get caught on
anything, to prevent injury.  *That's the part that wore out on mine
after about 5 years.   That was the only reason I had to re-order
one.  There are sterling silver and Gold ones for much more money, but
it would still need to be replaced like above after about 4+ years, so
at $300 that doesn't make it very attractive for long term use. G./
 
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