nystagmus

December 22, 2004

I just finished taking to the eye doctor and I was told that she has

rotational nystagmus and when I asked her what this was, she told me that it is

when the eyes make rotating movements. Now, goes to the eye doctor

once a year and I have never been told this and so when I got home, I went on

the net and did a search on nystagmus and Lamictal and sure enough it is one of

the side effects. When I asked the doc what it's doing to she said

that it feels like the world is spinning or moving in rotating motion, this is

crazy, another crazy side effect my daughter has had to endure because of these

AEDs. I am so glad that I'm weaning her off of them. I feel she has done worse

on these drugs and things just continue to get worse. I wish I had never put

her on AEDs. My poor baby is developmentally delayed and is not able to tell me

what she's feeling. I did notice that since she's been on Lamictal that

whenever she does certain letters or numbers that she's

like stuck in a circular motion for example, whenever she writes the letter C

she repeats the beginning part of the C over and over again until I stop her and

then she'll continue with the rest of the letter. This has been very

frustrating to watch and it also is what finally led me to the point where I

told her neuro that I want her off of the meds.

Has anyone had this happen or know of someone who had this happen to them and

can you describe what it felt like.

Thanks for your help!

Grace

When fear and worry test your faith and anxious thoughts assail, remember God is

in control and He will never fail.

__________________________________________________

December 23, 2004

Dear Grace,

My son was on Lamictal years ago and it increased his seizures to 18

a day!!!!!!!!!!!!!!!!!!!!!! He doesn't have 18 in 3 months. The

neuro said it was highly unlikely that an AED would do that but take

him off of it. The seizures went back to their normal pattern

immediately. I HATE Lamictal. My son has been on Dilantin -- it

caused a severe dystonic reaction in him and drug toxicity. He's

also been on Topamax, Depakote, phenobarbital, and I think one other,

but I can't remember it. They all made him dopey. I weaned my son

off of all meds two years ago. I did it over a period of a year and

a half without the neuro's consent because he said, and I quote, " He

has to be on something. " Can you believe that? Even though he had

these horrible side effects and they didn't control the seizures. I

have no more respect for neuros. And this guy is supposed to be the

best in the country for pediatric epileptology. My foot! That

having been said, this is my opinion only. You follow your gut,

girl. Once I started doing that, I slept a lot better, and had less

anxiety. And no, weaning my son slowly off the meds did not cause an

increase in his seizures, so that way I knew for sure they weren't

helping him even one-half of a percent.

I hope this helped.

Lori

>

> I just finished taking to the eye doctor and I was told

that she has rotational nystagmus and when I asked her what this was,

she told me that it is when the eyes make rotating movements. Now,

goes to the eye doctor once a year and I have never been

told this and so when I got home, I went on the net and did a search

on nystagmus and Lamictal and sure enough it is one of the side

effects. When I asked the doc what it's doing to she said

that it feels like the world is spinning or moving in rotating

motion, this is crazy, another crazy side effect my daughter has had

to endure because of these AEDs. I am so glad that I'm weaning her

off of them. I feel she has done worse on these drugs and things

just continue to get worse. I wish I had never put her on AEDs. My

poor baby is developmentally delayed and is not able to tell me what

she's feeling. I did notice that since she's been on Lamictal that

whenever she does certain letters or numbers that she's

> like stuck in a circular motion for example, whenever she writes

the letter C she repeats the beginning part of the C over and over

again until I stop her and then she'll continue with the rest of the

letter. This has been very frustrating to watch and it also is what

finally led me to the point where I told her neuro that I want her

off of the meds.

>

> Has anyone had this happen or know of someone who had this happen

to them and can you describe what it felt like.

>

> Thanks for your help!

>

> Grace

>

> When fear and worry test your faith and anxious thoughts assail,

remember God is in control and He will never fail.

> __________________________________________________

>

December 24, 2004

Lori, Lamictal gave me gave me insomnia so I had more seizures because

of the lack of sleep. That is not true about not giving you seizures

these medication. I was on topamax and it gave me 20 seizures a day

twice and I had to be hospitalized to get me off immediately.

How is your son now with his seizures?

> >

> > I just finished taking to the eye doctor and I was told

> that she has rotational nystagmus and when I asked her what this was,

> she told me that it is when the eyes make rotating movements. Now,

> goes to the eye doctor once a year and I have never been

> told this and so when I got home, I went on the net and did a search

> on nystagmus and Lamictal and sure enough it is one of the side

> effects. When I asked the doc what it's doing to she said

> that it feels like the world is spinning or moving in rotating

> motion, this is crazy, another crazy side effect my daughter has had

> to endure because of these AEDs. I am so glad that I'm weaning her

> off of them. I feel she has done worse on these drugs and things

> just continue to get worse. I wish I had never put her on AEDs. My

> poor baby is developmentally delayed and is not able to tell me what

> she's feeling. I did notice that since she's been on Lamictal that

> whenever she does certain letters or numbers that she's

> > like stuck in a circular motion for example, whenever she writes

> the letter C she repeats the beginning part of the C over and over

> again until I stop her and then she'll continue with the rest of the

> letter. This has been very frustrating to watch and it also is what

> finally led me to the point where I told her neuro that I want her

> off of the meds.

> >

> > Has anyone had this happen or know of someone who had this happen

> to them and can you describe what it felt like.

> >

> > Thanks for your help!

> >

> > Grace

> >

> > When fear and worry test your faith and anxious thoughts assail,

> remember God is in control and He will never fail.

> > __________________________________________________

> >

December 26, 2004

BELIEVE IT OR NOT......

I started researching this a while ago, and I brought all the info to my

daughters neuro at her appointment last week.

Well, the neuro agreed with me!!!!!! a is on trileptal, dilantin, and

keppra, and the neuro said to take her off them all!!!!!

She gave us a script for mysoline, to help with the withdrawal seizures, and

a weaning schedule. a has about 40 seizures a day now....so please keep

her in your prayers this wean goes good.

I thank God i found this neuro!!!!!!! She is the best. i never cared for any

of as docs, but this one, i worship the ground she walks on. She has

looked into and tried anything i asked to. She runs any test I ask her to. She

told me, she wont stop trying, till the seizures stop!

What a great doc!

,

I absolutely agree that AEDs can cause you to have many more seizures and my

daughter is also proof of this. Doctors are either ignorant of this fact or

just don't want to admit that this is true. Just like they can help some

reduce or eliminate their seizures, they can also increase or make them worse

for others.

Grace

December 26, 2004

,

I absolutely agree that AEDs can cause you to have many more seizures and my

daughter is also proof of this. Doctors are either ignorant of this fact or

just don't want to admit that this is true. Just like they can help some reduce

or eliminate their seizures, they can also increase or make them worse for

others.

Grace

angel_lts@... wrote:

Lori, Lamictal gave me gave me insomnia so I had more seizures because

of the lack of sleep. That is not true about not giving you seizures

these medication. I was on topamax and it gave me 20 seizures a day

twice and I had to be hospitalized to get me off immediately.

How is your son now with his seizures?

> >

> > I just finished taking to the eye doctor and I was told

> that she has rotational nystagmus and when I asked her what this was,

> she told me that it is when the eyes make rotating movements. Now,

> goes to the eye doctor once a year and I have never been

> told this and so when I got home, I went on the net and did a search

> on nystagmus and Lamictal and sure enough it is one of the side

> effects. When I asked the doc what it's doing to she said

> that it feels like the world is spinning or moving in rotating

> motion, this is crazy, another crazy side effect my daughter has had

> to endure because of these AEDs. I am so glad that I'm weaning her

> off of them. I feel she has done worse on these drugs and things

> just continue to get worse. I wish I had never put her on AEDs. My

> poor baby is developmentally delayed and is not able to tell me what

> she's feeling. I did notice that since she's been on Lamictal that

> whenever she does certain letters or numbers that she's

> > like stuck in a circular motion for example, whenever she writes

> the letter C she repeats the beginning part of the C over and over

> again until I stop her and then she'll continue with the rest of the

> letter. This has been very frustrating to watch and it also is what

> finally led me to the point where I told her neuro that I want her

> off of the meds.

> >

> > Has anyone had this happen or know of someone who had this happen

> to them and can you describe what it felt like.

> >

> > Thanks for your help!

> >

> > Grace

> >

> > When fear and worry test your faith and anxious thoughts assail,

> remember God is in control and He will never fail.

> > __________________________________________________

> >

December 26, 2004

,

You are one lucky person to have found a neuro like that one. I spent quite

a long time looking for one for my daughter Tasya and have one similar to

yours. a will be in all our prayers.

Mark Schauss, MBA, DB

www.carbonbased.com

Re: [ ] Re: Nystagmus

BELIEVE IT OR NOT......

I started researching this a while ago, and I brought all the info to my

daughters neuro at her appointment last week.

Well, the neuro agreed with me!!!!!! a is on trileptal, dilantin, and

keppra, and the neuro said to take her off them all!!!!!

She gave us a script for mysoline, to help with the withdrawal seizures,

and

a weaning schedule. a has about 40 seizures a day now....so please keep

her in your prayers this wean goes good.

I thank God i found this neuro!!!!!!! She is the best. i never cared for

any

of as docs, but this one, i worship the ground she walks on. She has

looked into and tried anything i asked to. She runs any test I ask her to.

She

told me, she wont stop trying, till the seizures stop!

What a great doc!

,

I absolutely agree that AEDs can cause you to have many more seizures and

my

daughter is also proof of this. Doctors are either ignorant of this fact

or

just don't want to admit that this is true. Just like they can help some

reduce or eliminate their seizures, they can also increase or make them

worse

for others.

Grace

March 7, 2005

,

My daughter's Nystagmus was a side effect from the Lamictal she was on. She has

been going to an eye doctor every year since she was about 2 years old and this

had never happened, but this time it did and it was after she started the

Lamictal and even her neuro told me that it is one of the side effects of

Lamictal. Thanks for the info.

Grace

<susanwald@...> wrote:

Grace,

glad you posted to the group, I have info that may be helpful to others, also.

I don't know much about vision and eyedoctors, but I kept thinking my 8 y.o. ds

had a " vision issue. " The optometrist told me his vision was fine. It wasn't

until I went to a specialized vision clinic at a local university and they did a

thorough exam that I found out my ds has visual processing issues. And he is a

visual learner, and visual processing is so far his greatest strength, poor kid.

They were able to find this out with not much input from him. They sent me home

with vision exercises to do with him which I am not diligent about. I'm really

focused on somehow increasing his language, which currently has a 4 year delay.

The point is, however, that an optometrist may not be astute enough to diagnose

nystagmus. You might look for a pediatric or developmental opthalmologist, who

would probably be better able to diagnose and treat nystagmus.

This has a link to a directory:

http://www.children-special-needs.org/parenting/pediatric_opthalmologist.html

Here is the site of a local dr. that a lot of parents I know have used and loved

for their LD kids, just so you can see the kinds of services offered:

http://www.drbradfordmurray.com/

One of the vision therapists' sites:

http://www.shoestringvision.com/pages/1/index.htm

www.headlinevisionenterprises.com

Date: Sat, 5 Mar 2005 12:38:26 -0800 (PST)

From: Grace <foxyfoxgrace@...>

Subject: Re: Adverse reactions on Lamictal?

Sophie,

Your email are coming directly to my email address but when I try to reply to

you, it comes back to me so I'm sending it directly to the group. I believe

that you may be having problems with your email address.

Nystagmus if bad enough can be seen with the naked eye, but in 's case,

it was not and the eye doctor was able to see it through magnifying lenses and

this is how I found out about it.

Grace

amkurious <amkurious@...> wrote:

Grace,

Is Nystagmus something they can 'see' without the cooperation of the

patient?

We have been to eye doctors previously but because she can

not 'respond' to their tests they can't really tell us if she's

having any difficulties with her vision.

Something is weird is happening with my posts...I did not think they

were going through as the last three I have sent in did not show up

in my own email nor do they appear on the main list here so I was

surprised to get a response from you. ???

(Hmmm...I wonder if this one will show up?)

Sophie

July 16, 2008

Nystagmus is an involuntary movement of one or usually both eyes. It

can be congenital in which case the vision is usually bad or acquired

which can require further investigation. The nystagmus may only

appear when looking in one direction of gaze or may be there when

looking straight ahead. It can be very gross and easy to spot or

quite fine.

It can be familial and nothing to worry about, albino children often

have it. It can also be a cause for concern if it is of sudden onset

and especially if accompanied by any double vision ( seeing 2 of

things with one eye open).

regards from London

Leigh

Home: 0208 958 8753

Note New Phone Number

Mobile: 07956 269368

email: susan@...

www.caringbridge.org/visit/susanleigh

skype ID: susan-leigh

On 16 Jul 2008, at 00:31, ROBERTA DOYLE wrote:

> OK, I GOOGLED THEM, THE FIRST IS THE ONE WE ALREADY HAVE SEEN AND I

> DONT; UNDERSTND ONE WORD OFTHE SECOND, AND LEAVE OUT THE SPACE,

> THAT IS ONE WORD: NYSTAGMUS

>

> ALSO, MY TRIAL NURSE CALLED ME WHILE I WAS BEING EXAMINED BY THE

> ENT DR. AND SAID I SHOULD GET AN ELECTROCARDIOGRAM, TODAY, IF

> POSSIBLE, SO THEY CAN RULE OUT ANY HEART PROBLEMS BE FORE THE

> INFUSE ME AGAIN ON FRI. i LOVE BEING ABLE TO BE IN A TRIAL,

> ESPECIALLY IF IT IS WORKING, BUT I AM SO TIRED OF DOCTORS,

> HOSPITALS, TESTS AND NURSES. I AM THANKFUL THEY CAN DO ALL THESE

> TESTS, I JUST WANT ONE WEEK WITHOUT SEEING A WHITE COAT !!

> AND A BUDDY OF OURS IS A PILOT AND USES A LOCAL COMPANY PLANE FOR

> ANGEL FLIGHTS. MY DAUGHTER JUST CALLED AND SAID JIM OFFERED TO FLY

> US TO ANN ARBOR FRI. I CAN JUST SEE HIM TRYING TO GET THIS BUTT OF

> MINE UP INTO THAT LITTLE PLANE, ESPECIALLY IF I TAKE ATIVAN, I'D

> LIKE A VIDEO OF THAT ONE...BOBBY

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

> 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

> #840 - Zavie's Zero Club

> 09/2006 - out of CCR

> 04/29/08 - XL228 Trial/ U.of Michigan

> 06/02/08 - CCR ( in 4 weeks)

>

July 16, 2008

THANK YOU, THAT WOULD EXPLAIN WHY HE HAD MY EYES FOLLOW HIS FINGER AND THEN SAID

THE PROBLEM IS MORE WITH THE RIGHT EAR...

<susan@...> wrote: Nystagmus is an involuntary

movement of one or usually both eyes. It