LymeNet Flash: myoclonic jerking episodes and the D.M.V.

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»	LymeNet Flash » Questions and Discussion » Medical Questions » myoclonic jerking episodes and the D.M.V.

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Topic: myoclonic jerking episodes and the D.M.V.

theviewfromthecurb
Member
Member # 10310

posted

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 ]

--------------------
well i know a disease that these doctors can't treat,
you contract on the day
you accept all you see...

Posts: 97 | From nor cal | Registered: Oct 2006 | IP: Logged |

lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

posted

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

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004 | IP: Logged |

shazdancer
Frequent Contributor (1K+ posts)
Member # 1436

posted

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

Posts: 1558 | From the Berkshires | Registered: Jul 2001 | IP: Logged |

theviewfromthecurb
Member
Member # 10310

posted

Hi tony-
i remember you- how are you doing!!! [Smile]

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.

--------------------
well i know a disease that these doctors can't treat,
you contract on the day
you accept all you see...

Posts: 97 | From nor cal | Registered: Oct 2006 | IP: Logged |

theviewfromthecurb
Member
Member # 10310

posted

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!

--------------------
well i know a disease that these doctors can't treat,
you contract on the day
you accept all you see...

Posts: 97 | From nor cal | Registered: Oct 2006 | IP: Logged |

CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

posted

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

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-

Myoclonus is a term all by itself that covers this.

-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

posted

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.

zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004 | IP: Logged |

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