I'm 14 And I Have Juvenile Myoclonic Epilepsy Posted: 06-19-04 21:52pm
I have had an eeg done recently when the
results came back there was a spike that
indicated I might have jme. My doctor
said they need to do a 24 or 48 hour eeg
to make sure. I'm 14 years old and have
done a little research on jme. Many of
the sites said the jerks happened in the
morning, and in the upper body. I get
some jerks in my arms and my legs.
However no one in my family has noticed
jerks. It feels like jerk inside but my
arms and legs never move. It also
happens throughout the whole day. Mostly
when I am relaxing. I thought I was just
twitching from stress from school. I
learned that jme is genetic but there is
no history in my family on either my mom's
or my dad's side. I was just wondering
if anyone had any advice. Is this really
jme or am I just imaganing it? Also I
was curious about the medication, and it's
side affects.
-vicki
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bubble1
New User, Becoming EHEALTHy
Joined: 17 Jan 2004 Posts: 16
Jme Posted: 06-23-04 10:00am
Hi viki
i was diagnosed with jme when I was 19 -
i'd actually had it since I was 17 but I
thought the jerks and twitches were
nothing to be concerned about until I had
a grand mal seizure and then I went down
the road of being tested for epilepsy and
the result of a sleep deprived eeg came
back as jme.
I take epilim (sodium volporate) to
control my epilepsy now - one of the side
effects for me has been weight gain but
not too much and i'd rather that then
having my arms jerking above my head. I
tried lamotrogine but had really bad panic
attacks on that and I also tried topamax
and had bad side effects on that. You
will find a drug that suits you - it is a
very individual thing. Like I say, i'm
on epilim and I think it's fantastic for
me but then I know people who can't stand
it and then again, i've tried topamax and
lamotrogine and I couldn't stand those
anti-epileptic drugs but then I know
people who think they are fantastic. At
first, finding the right anti-epileptic
drug is a case of trial and error because
nobody, not even the doctors, can know how
you will take to it - you just have to
give it a try and if one doesn't work then
you have to try something else until you
find the right one. Fortunately for me,
epilim worked straight away but i've had
to mess with it recently because I want to
try for a baby. There is a slightly
higher risk of having a baby with spina
bifida when you take epilim - there is a
slight increased risk of birth defects
with all aeds but epilim seems to hold the
highest risk for spina bifida (all women
hve 2-3% risk of having a baby with spina
bifida but the risk is slightly increased
to around 6% for women on epiim)
i very often get a feeling of having a
jerk but it feels like it's inside my head
- feels like I can feel misfiring or a
jolt in my head. I also get a lot of
twitches which is due to jme. I've just
had epilim increased to try and stop
these.
I have read loads too on jme too and
although it says jerks usually happen in
the morning, I find that I sometimes get
the jerks inside my head throughout the
whole day.
Have you had 24 hour eeg yet? I had
quite a few eegs which all came back as
normal so my neuro wanted me to have a
sleep deprived eeg because he said that
seizures in jme are usually triggered by
lack of sleep so sleep deprived eeg would
detect jme and fortunately it did and I
was able to start on my meds and get it
under control. When I was told I would
have to have a sleep deprived eeg, I
wasn't happy and didn't want to do it but
when results showed jme and I could get
sorted out, I was happy that i'd had it
done.
I've had a 24 hour eeg done too - had to
stay on an observation ward in the
hospital and walked round with a portable
eeg machine and had to sleep with it on
too but it didn't really bother me - I
knoew from past experience of having the
sleep deprived eeg that it's worth it in
the end because if eeg detects what the
doctors are looking for, then they once
they have the results they are looking for
they can get on with treating you with
correct medication.
Hope everything works out ok for you.
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angelbeans
New User, Becoming EHEALTHy
Joined: 08 Jul 2004 Posts: 38
Posted: 07-08-04 21:17pm
Hi there!
I was also diagnosed with what was thought
to be jme, however it never went away I am now 22, and I
still have not outgrown my seziures. I am
also on valproate sodium, however I find
that I have lost weight (only about ten
lbs or so) in the last ten years... This
could also be because I am done growing,
other than that, I have found llittle side
effects to be concerned about. Maybe less
energy than I used to have.
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Carls
New User, Becoming EHEALTHy
Joined: 21 Jul 2004 Posts: 1 Location: Toronto
Jme Sucks And 9/10...it Won't Go Away Posted: 07-21-04 13:19pm
I've read a few of the posts regarding
jme and I have been in the same boat as
most of you.
I was diagnosed at 15, however first
seizures occured at 14. I'm currently
24, been through too many eeg's to count,
been on epival for the same amount of
time, and on my last visit, I found out I
will most likely never outgrow it.
I will admit that this is the most
stressful thing that i've ever dealt with,
and it really sucks seeing as how my
seizures are brought on by stress.
I basically thought I was in this alone,
and as sad is this is to say, i'm glad
there are other people out there who are
going through what I am.
For those of you just diagnosed, stay
stong b/c you may be the lucky one that
gets to grow out of it.
I am now 22, and I
still have not outgrown my seziures. I am
also on valproate sodium, however I find
that I have lost weight (only about ten
lbs or so) in the last ten years... This
could also be because I am done growing,
other than that, I have found llittle side
effects to be concerned about. Maybe less
energy than I used to have.