Hey-
My life includes an exact mirror image of your same story. (Left and right
were flipped- my focus is on the right.)
When I was 12. I came out of my first seizure, upside down on the toilet
with a nasty bleed spreading under my fingernail. (I whacked it on
something.) Then (thinking I had to get to the bus stop) I started crashing
around the house in an attempt to get there, but I couldn't walk straight.
My parents asked WTF are you doing and all I could do is mumble vague stuff
while dripping saliva all over the place. The first thing they did at the
hospital was a drug screen because my parents were convinced kids in my
neighborhood were selling me drugs. I passed that with flying colors,
nyaaah. The CAT scan looked absolutely awesome. Unlike your daughter my
focus is on the right side, not the left. I often have seizures in the
middle of the night too. And my MRI (even at 3 Tesla) looks absolutely
fabulous- my brain is perfect. This stuff has never caused a permanent dip
in my intelligence (except for a few days after a seizure when I tend to
make dumb decisions).
Now to yak about Tegretol-
They prescribed Tegretol right away and I was on it for years. I didn't
notice a damn thing. It was like swallowing sugar pills. I didn't feel any
different, and the seizures didn't care either. They kept coming at the same
rate.
Instead of Tegretol you might ask your doctor if she can be put on Trileptal
instead of Tegretol. They're closely related and both work the same way. But
Trileptal is a newer drug and it's supposedly more effective than Tegretol,
with less serious side effects; it's definitely easier on your liver. My
neurologists always say "it's better in every way" than Tegretol. Dr.
Wikipedia agrees. With Tegretol you need periodic blood tests for enzyme
induction in the liver. Trileptal is somehow easier for the liver to tear
apart and doesn't induce weird liver enzymes. I don't know if the Depakote
warning still applies with Trileptal. But I hear about all these people
still on Tegretol and wonder why they aren't taking Trileptal instead.
If you're going to go with Tegretol I would recommend Tegretol XR, instead
of the regular tablets, for a steadier dose. They're more expensive though.
But if the script says XR, your insurance company probably won't ration you
generic Tegretol which has had a very bad reputation for some reason. My
psychopharacologist father-in-law says generic Tegretol is crap. But he's an
old man now and the Tegretol scene might have changed by now.
What can I say about them now that I'm on manly doses of three drugs,
Trileptal Lamictal and Lyrica? Well seizures have continued to group
together in clusters. Nothing happens for months and then suddenly over 2 or
3 days- bam BAM bam bam BAM. I have little ones that I don't remember at
all. Some hit in my sleep. Sometimes I can tell a cluster is in progress,
and I swallow enough Ativans at the right times to outsmart it. I think one
is going now- I was on a phone interview yesterday and my desk was sparkling
with (visual) auras so I had to pop an Ativan into my mouth really fast
while I was talking to the guy. That was really nerve racking. It went ok
though.
I have a little screw can on my keychain crammed with Ativan tablets. It's
very dangerous if police find it- it's a Schedule II drug and they'll think
you're a dealer. It happened to Timothy Baldwin on this list. But if I see
auras I can pop one under my tongue. During the middle of the night if I
have a seizure my wife crams one into my mouth and it helps a lot.
Never let them coadminister Tegretol with Depakote. When I was put on
Depakote along with Tegretol (this was in my 20s) I started to really notice
the effects of Tegretol at high doses. Your liver normally turns Tegretol
(which doesn't do anything, actually) into the "real" drug (carbamazepine
expoxide) which goes up to the brain to prevent seizures. Then your liver
turns that "real" drug into something else that gets excreted by the
kidneys. Depakote somehow prevents that second transformation so this
carbamazepine expoxide stuff builds up and up in your bloodstream.
What I remember was a sort of paralysis, an intense exhaustion. I had things
to do at work every day and it was a challenge to finish each single one; I
just couldn't get started on anything. I kept having dreams about falling
behind and getting fired. I spent a lot of time with my elbows on a table,
looking at the floor wondering what to do, falling further and further
behind on everything- at work, at home, etc. I kept putting off paying bills
because I kept forgetting and then just writing the checks was exhausting.
My memory turned to garbage and was practically useless.
So I went to a different doctor complaining about this Depakote. She said,
no, all this stuff isn't the Depakote, it's the Tegretol you're taking. The
Depakote prevents it from being metabolized and you're basically on an
extremely high dosage of Tegretol. She took me off the Tegretol and the side
effects went away.
ANYWAY my story resembles your daughter's a lot, so far, so feel free to
shoot an email.
-Jason
On Thu, Nov 26, 2009 at 9:41 AM, cristinfilipuzzi7 <
cristinfilipuzzi7@
> Hello everyone. My daugter was recently diagnosed with having epilepsy. My
> daughter is turing 12 next month. In January 2009, my daughter had a
> seizure for the first time, shortly after falling asleep. Luckily I was
> right beside her. It was very scary. Her face turned blue, purple along
> with her whole body shaking, foam at her mouth. She actually stopped
> breathing for a short time. And I could not feel a pulse. Shortly
> afterwards she was struggling to breath again. She makes this choking sound
> at the beggining as well. When the paramedics arrived her seizure was still
> not ended. They gave her an injection of medication and provided the air
> mask. Afterwards when she opens her eyes and looks around a bit, she cannot
> talk. When she is finally able to talk she starts screaming and crying.
> Then she is vomiting for hours, shaky, and lightheaded, sleeping alot.
>
> The folling day she had another one in the hospital.
>
> She was admitted for 2 days. And we had followups with the childrens
> nurologist. Her EEG shows that she has an abnormality in the left
> hemishpere of her brain which is triggering seizure activity. Mostly in the
> 2nd stage of sleep.
>
> She was not put on any medications. The doctor said that he wanted to wait
> and see if she would have anymore. Last Sunday at approx. 11:30pm it
> happened again. She had another one. Luckily I was right beside her again.
> We had a bad experience in the hospital, and she was sent home after
> waiting 10 hours with the paramedics beside her to see a doctor. A couple
> of hours later, she had another one.
>
> She had an MRI done. Which came back ok. The doctor wants to put her on
> Tegretol. He says that it is about 80% effective. There are many side
> effects. And I am very worried about this. I am really scared to give her
> this medication. The majority of medications cause so many other problems
> in your body. Does anyone know of any information that may help me.
> I really apprecieate it. Thankyou so much.
> Cristin Filipuzzi
>
>
>
> ------------
>
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>
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>
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