FOR EVERYONE- I answered this post when it was on page 2 and
don't think anyone got a chance to read it. Just
in case it may help anyone, i wanted to repost
the first persons question, and my response,
down the list. For the whole thread look on pg. 2
under "moving eyeballs, and twitching?"
(sorry for length) -catherine.
START: Frequent Contributor Member # 10235
Two nights ago my left arm started to shake,
my forehead got itchy,
and then my eyes rolled back in my head.
Next thing I know, my eyes are whacking
out on me. They're rolling around,
moving back and forth rapidly,
and my eyelids are blinking really fast.
My husband gave me three valiums
and this didn't help. I thought
I'd sleep it off but the next morning
the problem continued and worsened.
I called my LLMD and she said
my brain stem is infected and
it's affecting my eyes.
She recommended phenobarbital
but couldn't prescribe it.
My husband took me to my
family doctor's and they
took one look at me and
agreed I needed anti-seizure meds.
So, now I'm on 100 mg phenobarbital
at night before bed.
I took it for the first time
last night and woke up this
morning feeling like the
walking dead. But, my eyes only
rolled around for about
5 minutes today.
The only thing is, I'm
very tired from this new drug.
And I feel like my eyes want
to roll around but they're
being "controlled" - you know
what I mean? Like the pheno
is just masking a major problem.
My brain is so fried from this
disease. I feel like h-*-l-l.
- Julie
-------------------- I want to be free Posts: 390 | From: Endicott, NY | Registered: Sep 2006 | IP: Logged
****************************************************************************************************************** I WANTED TO SHARE MY EXPERIENCE
SO THAT IT MAY STOP SOMEONE
ELSE FROM the nightmare I WENT THROUGH.
*P.S. However...your on your own with marriage
advise!
theviewfromthecurb Frequent Contributor Member # 10310
Please bare with me,
as I have been pretty sick all week ,
and logged on to see if i could find
help for myself...
then i saw your post and wanted
to help you, as i have
something very similar.
It sounds like what I experience
almost daily.
My llmd calls it, "myoclonic jerking episodes".
I have had lyme and babs for 5 years now,
but went 2 years undiagnosed and untreated.
I had a brain scan 2-1/2 years ago,
and it had progressed into my brain
at that time, however it wasn't until
about 10 months ago, that the "episodes"
began.
I call them episodes because they
are unlike seizures that are more
common to a diabetic, from what I
understand.
Here is where it gets interesting...
Unfortunately, i married a con-man,
who took all my money, and my home,
by equity skimming my real estate. (my
pre-marriage money)
While I lay sick, and dying
from this disease, he was able to
forge my name without my knowledge......
The only reason I bring this up
is because 4 months ago in divorce court,
My llmd proved that i cannot work
due to my lyme conditions.
He used words that were not known
to the regular public.
AND , what does my "x" do?
He takes the doctors letters
from courtroom, and a list
of all my symptoms; the Myoclonic jerking episodes
being the main reason.
He brings this to the Department of Motor vehicles
and tries to have my license
"suspended for good",
on reckless driver,
and a hazzard to the
road!
The words, "myoclonic jerking episodes"
sound horrible,
but in no way demand a revoke in drivers license,
which we all know.
I have a clean driving record,
and after much
stress,plus getting my doctor
to call the D.M.V.,
then my doc needed to fill out 8 pages
of paperwork!
After everything was sorted out,
The D.M.V. was
actually disgusted from my "X's"
attempt at such an obvious
act of harassment, and told me
to tell the judge of his
harassment!and that the DMV
didnt need to waist time
on "good" drivers like me.
I wont go on, but my point is,
that i learned not
to call them "seizures".
Technically, they are called "episodes".
and although we take "seizure"
meds, don't be
confused by the separate
type of symptoms.
You would be amazed at what
bored and cruel people
will do to fill up their day
with other peoples business.
When we are sick, this stress
just makes it worse.
My symptoms for myoclonic jerking
episodes due to Lyme disease are:
1).bells palsy in the left eye brow,
which sags, numbs, and twitches.
This has been for about 3 years.
2).Jerking is in most of my
left body side, and my head and neck.
(It forms a giant capital "L"
when it gets moving fast)
3).My eyes are rapidly twitching
and blinking.
4).My left arm and left leg
flop about at their own will.
I have tried to sit on my arm,
but it doesn't work;
the movement still happens
inside the arm itself.
I have had a friend try
to hold me down, but it
just feels worse.
5).Also, i cannot speak
in complete sentences during
these episodes.
6). They last from 15 to 20
minutes and have only been
stopped by medication and
sedation through the meds.
7).I have found that I will
have about a 5 minute
window when I can feel one
coming on... like my
chin will start smaller jerks,
and so on.
This is when I immediatly
take the seizure meds.
(anti-muscle spasm) if i am
having a full on
episode, i will take 3 pills,
but 2 if i catch it before.
8). I take one at night because
I twitch more at
the end of the day, especially
if it was active.
The more stress you have in a day,
the more chance of an episode.
But this is what I have found
works for me, and everyone
is different.
9).the Magnesium pills work
well daily for less stress.
There are so many well
informed people on this
wonderful site that can tell you
just what to do.
I can only tell you what I
have experienced and i
just wanted you to know
that you are not alone.
My best advise would be to call
it exactly by name or
someone else might place you
in categories you may not belong.
BTW- After an interview
with the department of
motor vehicles,
it was determined that Myoclonic
Jerking episodes
do not warrant a suspension of a
drivers license ,
so anyone who may be worried
about this, rest assured,
i was just put through
it.
best of health to you!
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see...
- Posts: 87 | From: nor cal | Registered: Oct 2006 | IP: Logged
[ 14. January 2008, 03:22 AM: Message edited by: theviewfromthecurb ]
Posted by lymie tony z (Member # 5130) on :
Hi there lady from the curb...
Just a helpful hint... If you want to get something from one of the 2 or 3 or whatever page back on the 1st page,just
answer it by submitting one word like...
"up"
and the next time it appears on the forum should be on the first page.
zman
Posted by shazdancer (Member # 1436) on :
Hi viewfromthecurb,
Marvelous post, wonderfully helpful, and thanks! And as one who married poorly also, my heart goes out to you, and I hope that your sharp brain and determination will see you through to many good times ahead.
-- Shaz
Posted by theviewfromthecurb (Member # 10310) on :
Hi tony- i remember you- how are you doing!!!
even through my lyme brain, i know about the "bump" thing...
however, i wanted the "myoclonic jerking episode"
to be the heading for the topic, as some people may
not have heard of that term. I hadn't, and have
had lyme for what seems forever!!!
anyway , i thought it best to start a whole new
thread, but didnt want the original post to get
lost, and not be answered.
make sense? I hope so...
take care, catherine.
Posted by theviewfromthecurb (Member # 10310) on :
dear dancer and johnny- thank you for the kind words, i really appreciate them, especially during these troubled times...
after re-reading my post, i'm not sure i made it clear that the D.M.V. would consider a "seizure" to have your license revolked. That was my point...
so when I proved that there was a difference between seizures, and "myoclonic jerking episodes" it made all the difference!
it only took me 20 posts to clearly say what i wanted to say in the one sentence above!!!
hmmm, that's lyme for ya!
Posted by CaliforniaLyme (Member # 7136) on :
Wow- that sucks!!! What a jerk to do that!!! I am glad your doctor came through!!!
I WOULD have had to give up my Drivers License if I had told them the truth about how I was doing, but instead I just stopped driving until I was safe again and no longer suffered from the symptoms which would have had me lose my license...
It is hard enough being sick without peopple out to get you!!! Hugs to you!! Sincerely, Sarah
Posted by Keebler (Member # 12673) on :
-
Myoclonus is a term all by itself that covers this.
-
Posted by lymie tony z (Member # 5130) on :
I have a twin sister,
she had one minor seizure when we were kids like 40 odd years ago.
She was put immediately on pheno then later other things. It took her forever and a day to get her liscense as I recall....
I though it rather discrimminatory in that while taking her medication she had no more seizures all those years.
![[Smile]](smile.gif)