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Medical Forum / Diseases and Disorders / Epilepsy / February 2005

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Epilepsy and Irlen Syndrome

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angeleyes1@ntlworld.com - 10 Feb 2005 10:36 GMT
Hi everyone

Has anyone heard of Irlen Syndrome and does it have anything to do
with epilepsy?  I have recently been diagnosed with severe Irlen
problems which are like dyslexia but some of the symptoms were just
like side effects from my meds.

It sooooo explains some of the difficulties I've been having with my
studies at college and wondered if I was alone in this :-(
G.Ross - 10 Feb 2005 16:05 GMT
> Hi everyone
>
[quoted text clipped - 5 lines]
> It sooooo explains some of the difficulties I've been having with my
> studies at college and wondered if I was alone in this :-(

  I don't (know anyting about that) but someone might recognize it later
(shortly).

 Do you want to list the *Names of any medications (not doses etc.) ?

 Sometimes a Medication for one type of condition will be used for others
(like Epilepsy), so just on the outside chance they are ones some of us use,
we might have information among the participants about if there are side
effects or things to watch for wrt. the pills.
  That might be a 'dead end',  but I had 'random seizures' until I found
(by accident online) that Grapefruit Juice conflicts with Tegretol
operation.  Since I only used that juice once or twice a month or less, the
seizures that followed it by 12 hours, I wouldn't have related to that.
/G.
G.Ross - 10 Feb 2005 16:20 GMT
"G.Ross" <> wrote in message ...
>> Hi everyone
>>
[quoted text clipped - 3 lines]
> it, and one day I'll find how to turn on the Speelcheker on this machine !
> :-<   >  /G.
angeleyes1@ntlworld.com - 11 Feb 2005 10:11 GMT
Hi everyone

>> Hi everyone
>>
[quoted text clipped - 20 lines]
>seizures that followed it by 12 hours, I wouldn't have related to that.
>/G.

I take Lamictal and Rivotril.  The Irlen doesn't have any meds as far
as I know, I just have to wear weird tinted glasses and/or contact
lenses.  It takes me ages to type this stuff coz of all the mistakes I
have to go back and change.  If anyone saw my posts they wouldn't be
able to read them.  What's really weird is that I never used to be
this bad.  I didn't have much problem at school, that's why I was
wondering if there was any connection.

Thanks

Angeleyes
CyberCafe - 11 Feb 2005 20:59 GMT
> Hi everyone
>
[quoted text clipped - 34 lines]
>
> Angeleyes

Thanks for the courage to speak up.  Hey, I learned something from you today!
Probably the folks with photosensitivity epilepsy, like myself, should be made
aware of this.  It's interesting that the same eye filters for Irlen syndrome
seem to work with some patients with photosensitivity seizures. This is something
I've got to look into more.

Barb
angeleyes1@ntlworld.com - 12 Feb 2005 15:09 GMT
>> I take Lamictal and Rivotril.  The Irlen doesn't have any meds as far
>> as I know, I just have to wear weird tinted glasses and/or contact
[quoted text clipped - 15 lines]
>
>Barb

I have just been reading a site that says adults have learned to
compensate with the problems.  This makes sense.  Then it said that
extra learning pressures, (eg, going to college) can make things
worse.  Again with the good sense.

I'm left wondering how better things will be once I get the lenses.  I
know it can't be cured (way used to that line) but will it make the
kind of difference that makes things 'normal' again.  I mean, will I
be able to go shopping again where the lights don't effect me?  I feel
so guilty that my better half has to do all the grocery shopping on
his own.  I detest the essays I have been handing in coz I can't get
the words right and they really don't say what I want them to.  I get
so frustrated that I give up.  Then of course, I have to deal with
stupid lecturers who can't seem to read.  I have a support plan that
every lecturer, seminar leader, etc. has a copy of.  Then I get
subjected to films like "The Perfect Storm".  I would have walked out
of the movie but it was too dark.  Thankfully I didn't have a seizure
but I did have a few words with the lecturer afterwards.  And these
people have PhD's!

This is my first year and I have been very nice about it (there have
been other instances) but next year when my grades really start to
count, I'm not putting up with it at all.

Angeleyes
CyberCafe - 13 Feb 2005 04:04 GMT
>>>I take Lamictal and Rivotril.  The Irlen doesn't have any meds as far
>>>as I know, I just have to wear weird tinted glasses and/or contact
[quoted text clipped - 41 lines]
>
> Angeleyes

I don't know where you are going to school.  Are you in the US or
somewhere else?  I attended a Wisconsin tech college five years ago, and
they have some kind of student assistance program for students with
special needs.  I really didn't need anything from them but did tell
them about my health issues.  Boy, they were nice people and willing to
do whatever was needed, but like I said, I didn't need anything right
then.  It is probably a good idea to at least make the school aware that
you might have specific needs.  I wonder if they would let you hand in
taped essays.

Let us know how it goes once you get the lenses.  Do you think insurance
will cover it.  I'm just wondering how expensive the lenses are.  One of
my daughters gets awful migraines, which sounds like in some cases may
have a connection to Irlen syndrome.  I've got to do more research.  I
spent all day today installing software and trying to learn how to use
the programs, but I want to find some information for my daughter asap.

Did you have to travel far to find someone to test you for the filters?
 Sounds like there aren't many people who do that.

Barb
G.Ross - 11 Feb 2005 22:55 GMT
** Warning -- Long Post!  (I spent about an hour scanning some sites, so the
ones I thought would be of use to her and Barb are at bottom.  It might be
related to some szr. types, but might be more specific if some of you don't
want to read it all.  G.)

> Hi everyone
>>
[quoted text clipped - 26 lines]
>
> I take Lamictal and Rivotril.  The Irlen doesn't have any meds as far
****************************
> as I know, I just have to wear weird tinted glasses and/or contact
> lenses.  It takes me ages to type this stuff coz of all the mistakes I
[quoted text clipped - 4 lines]
> Thanks
> Angeleyes
G.  My reply -->
  I think the main Medications site if you didn't get a printout from your
Pharmacist with the prescriptions for Anti- Seizure pills is on the Ep.
Foundation of America -- http://efa.org   --*:Lamictal will be there, I
don't remember if Rivotril is an AED (anti ep drug) but the name is
'familiar' so it could be there too.

   I went off and did some Searches after your and Barb's posts.
Interesting I saw your post about the Glasses AFTER I went down the sites
(listed below) since one of them sounded like a commercial site selling the
Eye Glasses similar to what you described earlier.   One search I went
through msn.ca (Canada) since that's my main internet connection.   I forgot
to write down the search 'first' link, but it's something like http://msn.ca 
?
(Try under "Tools" or "Find", if you're using a Windows system, to see if
you get to a search option.  If you're not on a Microsoft system, you can
probably get to your local one via http://msn.nl  ?(a guess)   You might
have already done this.   But when I entered Irlen Syndrome  I pulled up
about 50? sites that used that phrase.   It appears on some of the sites to
be related to autism?  although the meds. you described are used to treat
seizures too.     Barb might find the Eyeglasses or *your comments on
whether they're useful, of interest.)
   Under the msn Search, I found these sites you can look at if you
want --> http://www3.telus.net/~judypool/irlen.htm  then no.  2-->
http://www.irlen.com/sss_distortions.htm   has some Samples of what it
'looks like' to the patient and a self-test.  (*note **one of these
somewhere looked like a Commercial Site, so if above wants more info. than
you think should be needed for a 'Free Test'  it could be trying to sell
something).
 (3) Irlen Syndrome (also listed on this as "Scotopic Sensitivity
Syndrome" -- condition that requires filtered light for reading etc.  **MAY
also be a Commercial site -- had links about either a Book or a Course
called "Flailing in the Surf" near bottom of one of the pages I went
through.   The (2) Links are at http://clevergirl.ca/journal/index.php?p=376 
+ http://www.dilam.com/press2.html  .

  *** IT Might have pulled in that first site and no.*4 below this since it
knew I was in Canada.  A similar search from Your machine, might pull you in
some other sites, closer to the Netherlands, as more useful for where you
are.  But since I found these anyway, there's no reason you can't look at
those, in case they would help.

  (4)  An Ottawa Canada Centre for Treatment of Children with Irlen's but
has several Articles within the site about it, type of glasses that it says
help some people with it similar to one in (3) is at
http://www.irlencentre.ca/general.html  .
**********
  Then I went to Google !  http://www.google.com  (I think was the link I
had on a bookmark and forgot! to bring here.   Try that one first, *or I
have a note about http://www.google.ca since I'm in Canada, or
http://www.google.nl might give you a link in the Netherlands.
 (For others) You could try that one, or if in another country or state,
you could try add your own state or country code at the End where my 'ca'
is,  and see if you get into google that way.

This search engine (Google) pulled in ~21!  Pages of 9-10 items each Page
(!!) which had the search words Irlen Syndrome on them.   Note that Google
sorts these from what it THINKS are *Most Likely to Least likely  from
websites, plus Group Posts (like these of ours), it finds.   USUALLY the
Most likely **useful matches show up within the First 4-8 items, whenever
I've used it.   But if you click down to end of a page of references and
none match what might be of interest to you, click the Arrow or "Next" word
(whichever it is) at bottom of page 1, and it will take you on to Page 2 of
the articles it found.
  (Note on the Google search if you haven't used that, you can reduce
amount of 'hits' if, for example you are only interested in people who have
Irlen Syndrome **and have Posted about Lamictal -->  You can set the Search
to Find Articles which contain IrlenSyndrome&Lamictal   <-- you can add More
(& for And) if there is a Third item too.  Often that can be handy to First
get articles like shown there of People who have Both the Syndrome *and are
using Lamictal. You might only get 20 articles, for example-> rather than
the number it found just looking for the Syndrome name(500?).

 The syndrome appears on One site I looked at (to make sure I wasn't
sending you on a wild goose chase), to be Related to a form of Autism ??
At least that's what one of the sites about Children had on it.   The sites
I looked at briefly and the Medicines you are using mentioned earlier, *are
used to treat seizures Too,  so even if you find some other sites related to
it,  you might want to stay subscribed *here too, and let us know if you
find other stuff beyond just what is posted so far.  Hth, G./
angeleyes1@ntlworld.com - 12 Feb 2005 15:09 GMT
>G.  My reply -->
>   I think the main Medications site if you didn't get a printout from your
>Pharmacist with the prescriptions for Anti- Seizure pills is on the Ep.
>Foundation of America -- http://efa.org   --*:Lamictal will be there, I
>don't remember if Rivotril is an AED (anti ep drug) but the name is
>'familiar' so it could be there too.

I actually take Rivotril for myoclonus, but that's a whole other
story.

<major snippage>

>This search engine (Google)

Already did that one.  Always a good place to start.

When I found the main site I emailed them to see if they could make a
connection.

<further snippage>

Just did a search including epilepsy and got over 2,000 hits.  There
appears to be many people with a connection to photosensitivity.

Thanks for all the advice and work you have done.  If only I could
look at the computer screen long enough to follow it all up :-(

Angeleyes
G.Ross - 12 Feb 2005 15:48 GMT
>>G.  My reply -->
>>   I think the main Medications site if you didn't get a printout from
[quoted text clipped - 17 lines]
> look at the computer screen long enough to follow it all up :-(
> Angeleyes

  Are you using (at home?) a CRT (TV like)  Screen to read the 'net?    I
met someone here ~6 years ago who couldn't use a regular screen (at least
the older ones at that time), and used an LCD Screen.    This new computer I
got has one, and there is no noticable 'flicker'  (at least to me).   If
some of your's might be aggravated by Screen Refresh rates, above might
help.
  I had also seen a 'screen guard'  (polarizing type screen face cover),
advertised at some computer stores (in Canada), to cut down screen glare,
but I don't know if those will help with what you experience.
   Some Ep. Association sites might answer that latter question.  Since the
screen guard clips onto the CRT front, even if you were using Computers at a
school you might be able to carry your 'guard' with you, and clip in on at
any CRTs in Libraries etc. where you are away from home. ?
    Maybe someone else 'here' could comment if they've used those and if
they are portable like I suggested above?      G./
CyberCafe - 13 Feb 2005 04:13 GMT
>>>G.  My reply -->
>>>  I think the main Medications site if you didn't get a printout from
[quoted text clipped - 35 lines]
>      Maybe someone else 'here' could comment if they've used those and if
> they are portable like I suggested above?      G./

 <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi> is from the National
Library of Medicine and has a database of articles and/or abstracts from
medical research, medical publications, etc.  There was information on
Irlen syndrome there, but in my brief research there I couldn't find
anything with both Irlen syndrome and epilepsy in the same article.

Barb
angeleyes1@ntlworld.com - 18 Feb 2005 16:49 GMT
<snippage>

>>    Are you using (at home?) a CRT (TV like)  Screen to read the 'net?    I
>> met someone here ~6 years ago who couldn't use a regular screen (at least
[quoted text clipped - 11 lines]
>>      Maybe someone else 'here' could comment if they've used those and if
>> they are portable like I suggested above?      G./

I have one of those guard thingys but it doesn't do anything much.  I
could carry one around college with me but I think my bag weighs
enough already!

>  <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi> is from the National
>Library of Medicine and has a database of articles and/or abstracts from
[quoted text clipped - 3 lines]
>
>Barb

I heard back from the Irlen people and they said they hadn't heard of
any connection either, but that isn't what my examiner said.  I have
to set another appointment up for more testing so I will ask whoever
again.  First I have to try to get funding (groan).  Got to make an
oppointment for that too.  By the time I get all this sorted I will
have graduated!

Angeleyes
G.Ross - 18 Feb 2005 18:08 GMT
> <snippage>
>>>    Are you using (at home?) a CRT (TV like)  Screen to read the 'net?
[quoted text clipped - 21 lines]
> could carry one around college with me but I think my bag weighs
> enough already!

 It's too bad it didn't help much. If it did you might be able to make a
case :-< if you were in U.S. or Canada for the College to provide one, where
you'd use it, under equiv. of Americans with Disabilities Act, so you
wouldn't have to carry your own.
  I also don't know if a Liquid Crystal screen (like I use now) would help
your case, since they're about same cost or cheaper now than CRTs, if the
Univ. would provide some of those, in addition to CRTs in Libraries.
 Most portable computers use those, and are getting lighter, if they would
work for your type of condition, so long as you could plug them into a 'hub'
if you needed to, but are also portable (kind of).  Dell notebooks, plus
Radio Shack models are running about $900. Canadian.    That's down about
50% from 2 years ago, but by the time they'd be more reasonably priced, you
might have already graduated ! :-<

 Do you need one to take to class?  Or is it enough if you could get one
that would work for you at home?   If the first, perhaps your Dr. could
write a 'note' saying you need xx type, and there might be grants or ?? to
help finance it.
  (I thought Microsoft was doing 'gifts' and 'scholarships'  a year or two
ago, for students who had special needs? They were providing special
software plus hardware(?) for people who might not be able to use a regular
Windows Screen system...  But I've never met anyone here (that I know of),
who had tapped into that offer.)  G./

>>  <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi> is from the National
>>Library of Medicine and has a database of articles and/or abstracts from
[quoted text clipped - 11 lines]
>
> Angeleyes
angeleyes1@ntlworld.com - 18 Feb 2005 22:46 GMT
>> <snippage>

>> I have one of those guard thingys but it doesn't do anything much.  I
>> could carry one around college with me but I think my bag weighs
[quoted text clipped - 13 lines]
>50% from 2 years ago, but by the time they'd be more reasonably priced, you
>might have already graduated ! :-<

I was offered a laptop by the college but I didn't want one.  They
gave me a home computer though, plus other stuff.  I even have a
couple of P.A.s who carry my bag and make sure I get to class okay.
I'm hoping the lenses will make a lot of difference.  I have to jump
through a few more hoops till then though.

Thanks for your advice.

Angeleyes

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