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Medical Forum / Diseases and Disorders / Epilepsy / October 2005

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This sucks

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dan@hotmail.com - 26 Sep 2005 17:24 GMT
Ok, call me big baby but the seizure thing is becoming a nuisance.  My first
seizures were in August of 1995.  Four grand mals back to back inside of 30
minutes.  No more until December when I had a minor one.  Taking Lamictal.

Last night I had a moderate seizure that lasted about three minutes.  It
knocked me out of bed and I hit my head pretty good.  I'm not very steady
today so I took off of work.  Didn't think I should drive.

Thus, I can use a little advice on coping.  Just about the time I think I'm
out of the woods, I get struck again.  Very depressing.  I am a CEO and used
to being in control.  Today I'm feeling sorry for myself.

By the way, unless I'm sleeping (as in last night) I can feel the onset of a
seizure.  Best I can describe it is mild to moderate confusion.  It almost
always passes but ALWAYS if I have a seizure it is preceded by the
confusion.  The neurologist says the confusion itself is a mild seizure.
Usually, I'm not too concerned about driving because I get an early warning.
Any of you have the same experiences?

Dan
gomper - 26 Sep 2005 18:44 GMT
> By the way, unless I'm sleeping (as in last night) I can feel the onset of a
> seizure.  Best I can describe it is mild to moderate confusion.  It almost
> always passes but ALWAYS if I have a seizure it is preceded by the
> confusion.  The neurologist says the confusion itself is a mild seizure.
> Usually, I'm not too concerned about driving because I get an early warning.
>  Any of you have the same experiences?

Sounds pretty familiar to me. For years I had a hard time describing to
my neuro what this uneasy state of confusion felt like, or what it was
_exactly_ what I was experiencing. I though it was an aura, until I did
some research on different sites to find out about Simple Partials
(recommended by one or more persons in this group, thanks a lot). I
suppose that's what your doctor means by a mild seizure. In other words,
you may have two different kind of seizures, and/or a simple partial
developing into a more serious one.
If you can't quite put your finger on what this confusion really is, try
 checking around reading other people's descriptions, to see if you
find something similar. At least, that's what I did, and I found it
pretty useful. And a bit comforting, to find other's out there are
sharing my experiences, that I'm not alone, so to speak. Perhaps it also
will make your doctor more able to zoom in on what's your exact problem,
and then perhaps find a better medication. I dunno, really, although
having ep for some 45 years, I only recently started digging into this
group and other internet sites.

/\
Deep bows,
ole k

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If a problem can't be solved, then what is the use of worrying?
If a problem can be solved, then what is the need of worrying?

(Shantideva)

G.Ross - 26 Sep 2005 20:42 GMT
 If you have a sports centre near to you, you can get a mouth guard they
use for football or hockey players (likely under about $12? ) .   Usually
they are made to cover top and bottom teeth with the one guard.  If you Dr.
thinks there could be risk of more of these (below),  cut the guard in half
(horizontally), so now you have 2.   Put one over the Top teeth at bedtime.
You only need cover one set, to protect teeth or tongue from a nocturnal
seizure.  Supposedly we're more at risk of these as our guards tend to be
lower as we sleep.   You only need to do that if you expect you *might have
more night time szrs.   There are *worse types of night time ones than you
had....  But those are no fun anyway.
   If you are taking medications already, you should tell the Dr. about
these, as the night dose might need to be upped or at least alternate
nights? to keep you fully under control all night.   I haven't used Lamictal
(others here have),  but 4 szrs. that close the Dr. should have known about
anyway back *then.  They can decide if an adjustment is needed, or if this
was just a fluke. I'd assume it wasn't due to there being *other stuff that
might explain this happening (alcohol or other things at dinner? could mess
up balance of some AEDs, and likely Lamictal as well as Tegretol that I
use.)

 The decision not to drive, at least until you're clear, is wise anyway.
If you're not feeling 100%, our guards are sometimes lowered and other szrs.
could be sitting around 'waiting'..  It's handy that you get a warning
(aura)--  I do too.    But I *did have a few about 5 years ago that were
what I called Rapid Onset as, before I even got a chance to say "Hey, that
feelings like a Seizr.. ",  I was on the floor and people were standing
around wondering what had happened there....
  (How do you know how long these last?  Are you aware during them all or
you have any witnesses to them?  Some of mine, the type I had, I was 'out
and away' and only knew how long by checking the time I came 'back'  vs.
when I estimated I left....  )   G./

> Ok, call me big baby but the seizure thing is becoming a nuisance.  My
> first
[quoted text clipped - 22 lines]
>
> Dan
G.Ross - 27 Sep 2005 16:23 GMT
With respect to the mouth guard described here, for those who have a Dental
Insurance Plan or want to pay for the 'proper one'  that fits better and
probably lasts longer than one described below, the Dental one is called an
Occlusal Splint, and a Dentist can give you a quote for what it would cost
in your area, and send an estimate to your Insurer, if you have one, to see
if they'd pay all or most of the costs.
 (The Hockey or Soccer one was suggested by my Dentist for trial versions
or for Children whose mouth and jaws grow so quickly they'd need a Refit
about each 6 months for 7 years as they grow.)

 The Splint  is of special use to people who have Nocturnal Seizures and
could produce damage to tongue or teeth while asleep.  Approx. cost with
fitting and lab costs (*No needles etc !! Lab is more than 60% of cost), is
about $150-$220. Canadian.  The splints (softer plastic semicircle that fits
on top teeth at night), are about $30. and first one is included in above
lab/fitting  cost.
 You can get replacement splints (if needed as any wear out)  for about 2
years, from the Plaster Imprint that was taken, before a Refit should be
done. While my first ones only lasted 7-9 months, the ones I have now are
lasting 2-3+ years, so I assume I have lowered number of  Nocturnal Szrs. to
a negligible amount.   FYI.   G./

>  If you have a sports centre near to you, you can get a mouth guard they
> use for football or hockey players (likely under about $12? ) .
Other poster (Dan)  -->

>> By the way, unless I'm sleeping (as in last night) I can feel the onset
>> of  a
[quoted text clipped - 6 lines]
>> Any of you have the same experiences?
>> Dan
Patsy and Darryl - 27 Sep 2005 13:36 GMT
> Ok, call me big baby but the seizure thing is becoming a nuisance.  My
> first
[quoted text clipped - 22 lines]
>
> Dan

Hey Dan,
I used to drive, because for 30 years my seizures were preceded by an aura
which warned me and allowed me to pull over before the seizure struck.
That was all good until my epilepsy decided to throw a loop (as epilepsy
invariably does). One day the seizure struck without any forewarning and I
hit a pedestrian who is now dead because of me.
I know it's not easy to be without a car - trust me, I'm finding it very
hard. But we have to consider the fact that driving a car to make things
easier for ourselves is just putting others and ourselves at risk
unnecessarily.
In most countries you have to be seizure free for a year, some it's six
months, before you can drive again. Personally, I think it's just safer not
to drive at all if there's ever a chance you might have a seizure. Because
you just don't know when one's going to hit without warning you first. And
neither do the innocent people your car passes on the street.

Darryl.
E.B. - 28 Sep 2005 20:01 GMT
Dan,

What you are describing is part of the story of my life.  Everybody
responding has very good ideas for you.  I would advise taking a good
look at what triggers those nocturnal seizures (I feel like I was the
world's worst at having them once) .  Do you snore?  Have you been
diagnosed with sleep apnea?  This was part of the seizure monster I
have.  "AHH!" It was so frustrating. Sleep apnea would deprive my brain
of oxygen for about a minute of not breathing and then I would find
myself having huge convulsions to the point I nearly died.  A CPAP
machine didn't work (I hated it anyway).  I went to an
otolaryngolosisthoweveryouspellit (head and neck surgeon).  She took
one quick look inside of my mouth and said "Those golfballs (tonsils)
have got to come out, why haven't they been removed before?"  I was 37
and the tonsillectomy  was rough, but the nocturnal seizures are
"over." Before being diagnosed I would alleviate the risk with a small
pillow under my chin while sleeping, reducing the risk of nodding my
head and going into sleep apnea.

As for the simple-partial auras, it was the same for me as a warning
sign, but it cannot be relied on in driving (ask someone who nearly
lost his life from it like me).  Negligence on my part could have
brought manslaughter charges or worse if someone was killed while I
knowingly drove with the risk of a seizure.  I depended on it as a
warning not to drive, but with newer medications controlling the auras,
a "warning sign" of a larger seizure might not come anymore.

Just hang in there, its the neverending battle of my life.

E.B.
Karl Magnacca - 30 Sep 2005 05:24 GMT
I'd just like to reinforce what's already been said about relying on auras
for driving.  Not only do they sometimes not come, but because they are
minor seizures they also affect your reasoning.  Just because you think,
when you're normal, that as soon as you feel an aura you'll pull over,
doesn't mean you actually will when it happens.

Karl
owlvee - 02 Oct 2005 05:03 GMT
> Ok, call me big baby but the seizure thing is becoming a nuisance.  My first
> seizures were in August of 1995.  Four grand mals back to back inside of 30
[quoted text clipped - 16 lines]
>
> Dan

Dan,
Confused is right!
You are going to have a seizure while driving and hurt/kill a child or
two that's walking on the sidewalk, or injure someone in another
vehicle. And now you can't say it was because you were not informed
enough to know better.
A person isn't ALWAYS forwarned before a seizure.
Your phrase "NOT TO CONCERNED ABOUT DRIVING" will haunt you forever when
you do. (Or should!).........
Again, a person that has seizures doesn't always know ahead of time.....
Take if from someone who knows.
~..~
owlvee
Jim Garland - 03 Oct 2005 14:47 GMT
Hi Dan
Epilepsy in general really sucks.....period...

I know for myself being a senior partner and GM I too am used to being in
charge and when epilesy....interupted my life 16 years ago at the ripe age
of 24 I was very upset and thought my career would be over...
But I quickly threw those negative thoughts out and did everything I could
to succceed..
I have the same aura feeling that you feel and most likely most of us
do.When a seizure is about to hit me I feel confused and can't concentrate
and apparently I stare at one point for a long long time...
I have been seizure free for over a year now but for the last few I have
had one major blow up always in the latter part of Aug and last year my
common law wife read an article on taking allergy medications and
tegritol...I was taking clariton for seasonal allergies and attribute that
to causing my seizures in Aug as I feel since I would start taking them in
July that by the end of Aug I had so much built up in my system that my
absorption rate of tegritol was altered..I am not a doctor or researcher so
this is just a  guess.
Hope this helps a bit and hang in there.
Remember.
you have epilepsy ...epilepsy doesnt' have you!!!!!!!!!!!
cheers
> Ok, call me big baby but the seizure thing is becoming a nuisance.  My
> first
[quoted text clipped - 22 lines]
>
> Dan
Me - 07 Oct 2005 19:31 GMT
snip
> Usually, I'm not too concerned about driving because I get an early
> warning.
> Any of you have the same experiences?
>
> Dan

end snip

Start of free advice:
Dan, my first seizures were grand mal and started when I was 11.  They
stopped when I was about 20 and I started have complex partials. "Let the
record show that the defendant has voluntarily surrendered his license to
the court." was the last thing the judge said.

You will lose every bit of control that you would ever have, if you have an
accident - even if you don't injure or kill anyone.  Do not drive.

Ephraim
End of free advice

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