Hi to everyone, new and old members alike.  It has been way too
quiet in here.  Everyday when I come in and check the messages, I
feel like I'm coming in to a ghost town.  I hope that means that
everyone is doing really well but since we have had quite a few new
members who have never posted anything, I wanted to post and
encourage you all to feel free to post any questions, thoughts, news
or comments that you want to share with the group.  We would love to
hear from you.
Have a great day.
Robin

I was finally diagnosed suffering from Post Traumatic Flbromyalgia
that is different from regular flbromyalgia. This only occurs from
blunt force trauma. When the incompetent chiropractor hurt my neck he
set it off again. I am seeing a neurologist who will investigate the
origin - nerves in my neck or if it's the brain itself. I will be
taking test for these. One thing that hit my heart-of-heart is I now
understand what happens to me when my brain wave slows down. I can
feel it (I described it as levels of consciousness lowering). I can't
see clearly due to light sensitivity (Irlen Syndrome), migraines,
process things, and concentrate…

That is when I have medical problems. Treat the Post Traumatic
Flbromyalgia and it all works out better for me, and my system settles
back down faster. I am amazed that when I only had Irlen Syndrome
glasses that they helped me with my seizure disorders…! It was only
when my neck was re-injured that my world fell "apart" again "The
injury happened from the auto accident of 91 (severe chronic
whiplash). I still use the Irlen Glasses but not like before.
Something is different now, but they still help.

I came back from Iowa with a cold that turned into a lung infection. I
got better two days ago to be able to travel to Arizona for a seminar.
Whew. I will be gone from the 4th to the 8th. In the meantime…feel
free to post.

Lu

Just wanted to touch on migraines. I suffer from ocular (eye)
migraines, cervical (neck) migraines, and painless (silent) migraines.
All three affect my light sensitivity (Irlen Syndrome) and vision. I
suffered from severe migraines from an auto accident in 91, but found
relief with a good chiropractor who also practiced craniopothy.

I had bad treatments over a year ago from an incompetent chiropractor
(a different chiropractor), and he re-injured my neck. It set off some
of the severe whiplash symptoms from the auto accident I had in back
in 91.

Understanding migraines has allowed me to understand the challenges
with my color filter lenses. That is depending on what kind of
migraine I am having…will determine the pattern of how I will need to
use my light, and/or dark color filter glasses. I am currently working
on getting color filter reading glasses.  Interesting as Helen's last
newsletter (January 2004-June2004) mentioned how color filter glasses
helps with migraines.

It appears I will need to use all of these pairs of color filter
glasses for whatever task I do…thus task to task. Migraines are a
challenge in themselves, but I am grateful to have my color filter
glasses. It is bothersome to use different glasses for different
tasks, but at lease they allow me to "push the envelope forward".
There is no other option in the medical establishment for light
sensitivity like the color filter glasses for me.

I am working with doctors to resolve my migraines, but until then this
will be the pattern I will have to go by with my color filter glasses.
Also, diet, rest, exercise…

Lu
PS I may not be able to come back onto this website until after the
23rd of this month.

Hi Carrie,

Yes, after the auto accident I had TMJ symptoms that were bad.
Interesting how it can affect the vision. When the chiropractor hurt
me...my jaws tighten like they were locked. The new chiropractor has
brought considerable relief to my jaws.

I will be out of town from October 18th to the 23rd. I will be in Iowa
visiting my daughter. Sorry I took so long. I was in the mist of
writing a screenplay.

Lu

--- In glimmercoloredfilterglasses@yahoogroups.com, Carrie Maragos
<shel_tz@y...> wrote:
> I'm wondering, do you also have any TMJ symptoms?  I've heard a bad
neck can lead to tightening of muscles which leads to TMJ, which can
lead to vision problems.  It's such a domino effect.  I've been having
some cracking in my jaw lately and some pain in my face in the jaw
area.  One thing causes another, causes another, and so on.  I just
want to get it all fixed but I have to do so in the right order.
Geesh!!!!
>
> Thanks for listening :)
>
> Carrie

Thanks for sharing your thoughts and bring up the connection
between TMJ and vision problems.
   I sustained serious TMJ damage as a result of the same injuries
that brought on my vision problems.  I have been to many
specialists, including one of the most highly respected TMJ
specialists in the country and have gotten no relief.
   Do you have any more information or insights that might be
helpful?  I would love to keep hearing from you as you work through
this and I wish you the best.
Robin

--- In glimmercoloredfilterglasses@yahoogroups.com, Carrie Maragos
<shel_tz@y...> wrote:
> I'm wondering, do you also have any TMJ symptoms?  I've heard a
bad neck can lead to tightening of muscles which leads to TMJ, which
can lead to vision problems.  It's such a domino effect.  I've been
having some cracking in my jaw lately and some pain in my face in
the jaw area.  One thing causes another, causes another, and so on.
I just want to get it all fixed but I have to do so in the right
order.  Geesh!!!!
>
> Thanks for listening :)
>
> Carrie
>
> amluhu <no_reply@yahoogroups.com> wrote:
> Hi Carrie,
>
> Yes, it is very serious when you go to a chiropractor for help,
have
> his adjustments, and those adjustments make your symptoms worse. I
was
> in an auto accident in 91 and about a year after my auto accident I
> went to see my first chiropractor. He helped me out tremendously.
He
> referred me to another chiropractor who further helped me. After
the
> last treatment with him (it plateau), so I stopped.  I was fine for
> about two years, except for a muscle spasm in my upper left
shoulder
> blade. I was treating it successfully myself with neodymium magnets
> for the pain, and the size of the muscle spasms.
>
> When I met that incompetent chiropractor at an air show. He
promised
> me to melt away the muscle spasm in my upper shoulder blade like
> butter. He did not do this, he made them bigger, and worse. He also
> started up my severe migrans again that started after my auto
> accident. I needed to take narcotics. I am now seeing another
> chiropractor whom my neck doctor referred me to. He is fantastic,
and
> brought me glorious relief (than my neck doctor), but I am
grateful to
> my neck doctor when I need his help from the acute pain that
suddenly
> hits me. I use the narcotics when my migrans become unbearable,
and I
> take them as needed.  I prefer not to take them, and under the
care of
> my new chiropractor I am sure my migraines will once again become
> under control, thereby reducing the need for any medications.
>
> Interestingly, the problems I had been having with my light
> sensitivity are more manageable since seeing my latest
chiropractor. I
> am better able to work within certain light environments. I protect
> myself from light sensitivity more successfully, before it was a
lost
> caused after the bad chiropractor hurt my neck again. That threw my
> nervous symptom into complete chaos, and also with my color filter
> glasses. Thankfully, I am once again able to use my color filter
> glasses effectively.
>
> It appears to me that sometimes you need to get a medical condition
> under control until the color filter glasses work. At least that
> happened for me when a bad chiropractor hurt my neck again.
>
> Note: My auto accident gave me severe whiplash. I have always
> suspected my neck, because I was in perfect health until the severe
> whiplash in the auto accident. I had no SSS. Both of my arms were
> locked in a contorted position for a long period of time until
> physical therapists helped relaxed my locked neck muscle from their
> spasms. Go figure.
>
>
>
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> [Non-text portions of this message have been removed]

I'm wondering, do you also have any TMJ symptoms?  I've heard a bad neck can
lead to tightening of muscles which leads to TMJ, which can lead to vision
problems.  It's such a domino effect.  I've been having some cracking in my jaw
lately and some pain in my face in the jaw area.  One thing causes another,
causes another, and so on.  I just want to get it all fixed but I have to do so
in the right order.  Geesh!!!!

Thanks for listening :)

Carrie

amluhu <no_reply@yahoogroups.com> wrote:
Hi Carrie,

Yes, it is very serious when you go to a chiropractor for help, have
his adjustments, and those adjustments make your symptoms worse. I was
in an auto accident in 91 and about a year after my auto accident I
went to see my first chiropractor. He helped me out tremendously. He
referred me to another chiropractor who further helped me. After the
last treatment with him (it plateau), so I stopped.  I was fine for
about two years, except for a muscle spasm in my upper left shoulder
blade. I was treating it successfully myself with neodymium magnets
for the pain, and the size of the muscle spasms.

When I met that incompetent chiropractor at an air show. He promised
me to melt away the muscle spasm in my upper shoulder blade like
butter. He did not do this, he made them bigger, and worse. He also
started up my severe migrans again that started after my auto
accident. I needed to take narcotics. I am now seeing another
chiropractor whom my neck doctor referred me to. He is fantastic, and
brought me glorious relief (than my neck doctor), but I am grateful to
my neck doctor when I need his help from the acute pain that suddenly
hits me. I use the narcotics when my migrans become unbearable, and I
take them as needed.  I prefer not to take them, and under the care of
my new chiropractor I am sure my migraines will once again become
under control, thereby reducing the need for any medications.

Interestingly, the problems I had been having with my light
sensitivity are more manageable since seeing my latest chiropractor. I
am better able to work within certain light environments. I protect
myself from light sensitivity more successfully, before it was a lost
caused after the bad chiropractor hurt my neck again. That threw my
nervous symptom into complete chaos, and also with my color filter
glasses. Thankfully, I am once again able to use my color filter
glasses effectively.

It appears to me that sometimes you need to get a medical condition
under control until the color filter glasses work. At least that
happened for me when a bad chiropractor hurt my neck again.

Note: My auto accident gave me severe whiplash. I have always
suspected my neck, because I was in perfect health until the severe
whiplash in the auto accident. I had no SSS. Both of my arms were
locked in a contorted position for a long period of time until
physical therapists helped relaxed my locked neck muscle from their
spasms. Go figure.



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[Non-text portions of this message have been removed]

Hi Carrie,

Yes, it is very serious when you go to a chiropractor for help, have
his adjustments, and those adjustments make your symptoms worse. I was
in an auto accident in 91 and about a year after my auto accident I
went to see my first chiropractor. He helped me out tremendously. He
referred me to another chiropractor who further helped me. After the
last treatment with him (it plateau), so I stopped.  I was fine for
about two years, except for a muscle spasm in my upper left shoulder
blade. I was treating it successfully myself with neodymium magnets
for the pain, and the size of the muscle spasms.

When I met that incompetent chiropractor at an air show. He promised
me to melt away the muscle spasm in my upper shoulder blade like
butter. He did not do this, he made them bigger, and worse. He also
started up my severe migrans again that started after my auto
accident. I needed to take narcotics. I am now seeing another
chiropractor whom my neck doctor referred me to. He is fantastic, and
brought me glorious relief (than my neck doctor), but I am grateful to
my neck doctor when I need his help from the acute pain that suddenly
hits me. I use the narcotics when my migrans become unbearable, and I
take them as needed.  I prefer not to take them, and under the care of
my new chiropractor I am sure my migraines will once again become
under control, thereby reducing the need for any medications.

Interestingly, the problems I had been having with my light
sensitivity are more manageable since seeing my latest chiropractor. I
am better able to work within certain light environments. I protect
myself from light sensitivity more successfully, before it was a lost
caused after the bad chiropractor hurt my neck again. That threw my
nervous symptom into complete chaos, and also with my color filter
glasses. Thankfully, I am once again able to use my color filter
glasses effectively.

It appears to me that sometimes you need to get a medical condition
under control until the color filter glasses work. At least that
happened for me when a bad chiropractor hurt my neck again.

Note: My auto accident gave me severe whiplash. I have always
suspected my neck, because I was in perfect health until the severe
whiplash in the auto accident. I had no SSS. Both of my arms were
locked in a contorted position for a long period of time until
physical therapists helped relaxed my locked neck muscle from their
spasms. Go figure.

I'm on the dry eye list as well and several of us found that Zyrtec really
dramatically improved our dry eye symptoms.  Not claritin, not flonase or any
other - just Zyrtec.  Why, I don't know, but it worked miracles for some of
us... worth checking in to.  (I don't work for a drug company btw - this isn't a
sales pitch)

Thanks,
Carrie

amluhu <no_reply@yahoogroups.com> wrote:
Wow, how dreadful. I am sorry to hear this about your friend. I now
and then suffer from dry eyes for some inexplicable reason.

Using over the counter eye moistures help me. After hearing about your
friend I am glad it helps me. I also treat myself for allergies and
allergies in the eyes. A natural product that works for me is stinging
nettle.  I get it from a local health food store or I go to the local
drug store and get an over the counter medicine for allergies in the
eyes.

I use this for several days or weeks or until the symptoms become
tolerable. I first go the natural way, and most of the time I am
successful in its use.

I still suffer from dry eyes but it is not a tremendous issue for me.
I never connected light sensitivity with dry eyes before. I did
connect feeling fatique with allergies though. When I treat the
allergies I also treat the fatigue, and usually I feel better from
feeling fatique and from my allergies. My eyes get red, swollen, hot,
sting, and blurry. They can also get dry. I will have to keep track of
it. I will let you know how it all works out. It makes sense to me as
my allergies affect my light sensitivity.

Lu




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Hi Lu,

I'm wowing over the chiropractor link.  I started seeing a chiro about when my
symptoms started.  I haven't been diagnosed as SSS but I can't think of what
else my trouble focusing might be.  Every eye doctor and neurologist I've been
to says I'm fine.  Wow, now I'm really regretting going.  They adjust my neck
even though I'm really there for my lower back.  Ouch - did I bring this on
myself by going to the chiro.  Wow, I hadn't thought of that.  You've got me
wondering now....

Thanks,
Carrie

amluhu <no_reply@yahoogroups.com> wrote:


Hello Tesa,

Don't feel bad about your son struggling with SSS. There is not enough
public education to reach everyone to know and understand SSS. I all
to well understand how bad SSS can be where your son can only see one
word per page. It is quite understandable that reading for him places
a big strain on him.

Yesterday, when I went shopping I could not read. I could see the
merchandise but I could not read. I discovered over a year ago that my
pattern in SSS drastically changed when an incompetent chiropractor
re-injured my neck for an auto injury in 1991. It is baffling how this
could have had an affect. I guess Helen Irlen will one day discover it.

I am ecstatic to hear that the other school district discovered that
he had SSS. Wow! Your son seems to be in the right place now.
Wonderful! I am always happy to hear that the school district gets
involved with SSS for the sake of their students. Education is the
world to each person in this country. What a shame it can be for a
child to be defeated with SSS. Don't feel bad as a mother, and don't
look back at what ifs, could haves, and shoulds. Your son does not
need his mother to feel guilty and bad. He needs his mother's strength
now. 13 years old is plenty of time for him to get through the rest of
his years. To learn how to deal with SSS. This will allow him to
prepare for what he wants to do with his life when he graduates. Don't
feel bad. Focus on the future now.

It is a shame how children are "dog" labeled and not helped to
overcome their learning disabilities, no matter at what level it comes
from. Each child is important and disserves help when they need it.
Sometimes a parent is the only who can. I know it could become a
handful, but be prepare for what to do when you feel bad by doing
something that will cancel that feeling that will only waste your
energies.

"Purple" is one of the filters I use to help me with my light
sensitivity. I now need different color filter glasses for different
tasks. I on my own have pretty much figured it out, as there are no
eye doctors who understand on SSS. I have a prescription for reading
glasses I will fill out and have the colored filtered. I have to
remove my glasses for reading, as I can get sick?

Yesterday, I got in a bind at Wal-Mart as I could not read with my
current color filter glasses, (different color filter glasses for
different tasks) and had to take them off (from wearing them for
outside and riding in a car due to the lights). I know I need some
color filter glasses to help me read, as I could not make out AAA
batteries from AA so I ended up buying the wrong ones. One of the
employees there tried to help me locate the display, but I could not
read to see it. She kept saying "its right there" I said "where?"
"Right there" well this went on for about two minutes. It was right in
front of me! That is SSS.

I sheepishly looked at her. She seemed amused, smiling at me as I must
have appeared silly to her, when in fact I really could not read to
save my life if I had to. I mean it is just like being legally
"blind"! I just went about my life again. I have gotten used to ignore
situations like this, and not to justify my SSS because it is not well
known. I pick the people I do explain carefully in order to protect
myself...

I have dark ones and light ones that are fine. A previous lighter
color filter helps me to see. Sometimes you just have to listen very
hard to the symptoms, look for patterns of efficiency and when light
defeats you. I will see Helen Irlen when I find myself in a bind with
my SSS and I need her help. I will go and see her if I need to. I
figured my SSS out pretty good.

Sometimes I have to be patient, this last time that I needed to figure
out my color filter glasses took me over a year. Thank G-d that my
previous colors worked for me even if limited, but they were good
enough. The trick is to keep at it. I can tolerate light more but I am
not out of the woods yet as I need to wear my color filter glasses.
They are my helpers for me to be able to see, and live my life as
normal as possible.

Tesa, I am busy with my writing for a while. You are welcome to
contact me here at this website.

Lu



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[Non-text portions of this message have been removed]

Wow, how dreadful. I am sorry to hear this about your friend. I now
and then suffer from dry eyes for some inexplicable reason.

Using over the counter eye moistures help me. After hearing about your
friend I am glad it helps me. I also treat myself for allergies and
allergies in the eyes. A natural product that works for me is stinging
nettle.  I get it from a local health food store or I go to the local
drug store and get an over the counter medicine for allergies in the
eyes.

I use this for several days or weeks or until the symptoms become
tolerable. I first go the natural way, and most of the time I am
successful in its use.

I still suffer from dry eyes but it is not a tremendous issue for me.
I never connected light sensitivity with dry eyes before. I did
connect feeling fatique with allergies though. When I treat the
allergies I also treat the fatigue, and usually I feel better from
feeling fatique and from my allergies. My eyes get red, swollen, hot,
sting, and blurry. They can also get dry. I will have to keep track of
it. I will let you know how it all works out. It makes sense to me as
my allergies affect my light sensitivity.

Lu

Hello Tesa,

Don't feel bad about your son struggling with SSS. There is not enough
public education to reach everyone to know and understand SSS. I all
to well understand how bad SSS can be where your son can only see one
word per page. It is quite understandable that reading for him places
a big strain on him.

Yesterday, when I went shopping I could not read. I could see the
merchandise but I could not read. I discovered over a year ago that my
pattern in SSS drastically changed when an incompetent chiropractor
re-injured my neck for an auto injury in 1991. It is baffling how this
could have had an affect. I guess Helen Irlen will one day discover it.

I am ecstatic to hear that the other school district discovered that
he had SSS. Wow! Your son seems to be in the right place now.
Wonderful! I am always happy to hear that the school district gets
involved with SSS for the sake of their students. Education is the
world to each person in this country. What a shame it can be for a
child to be defeated with SSS. Don't feel bad as a mother, and don't
look back at what ifs, could haves, and shoulds. Your son does not
need his mother to feel guilty and bad. He needs his mother's strength
now. 13 years old is plenty of time for him to get through the rest of
his years. To learn how to deal with SSS. This will allow him to
prepare for what he wants to do with his life when he graduates. Don't
feel bad. Focus on the future now.

It is a shame how children are "dog" labeled and not helped to
overcome their learning disabilities, no matter at what level it comes
from. Each child is important and disserves help when they need it.
Sometimes a parent is the only who can. I know it could become a
handful, but be prepare for what to do when you feel bad by doing
something that will cancel that feeling that will only waste your
energies.

"Purple" is one of the filters I use to help me with my light
sensitivity. I now need different color filter glasses for different
tasks. I on my own have pretty much figured it out, as there are no
eye doctors who understand on SSS. I have a prescription for reading
glasses I will fill out and have the colored filtered. I have to
remove my glasses for reading, as I can get sick?

Yesterday, I got in a bind at Wal-Mart as I could not read with my
current color filter glasses, (different color filter glasses for
different tasks) and had to take them off (from wearing them for
outside and riding in a car due to the lights). I know I need some
color filter glasses to help me read, as I could not make out AAA
batteries from AA so I ended up buying the wrong ones. One of the
employees there tried to help me locate the display, but I could not
read to see it. She kept saying "its right there" I said "where?"
"Right there" well this went on for about two minutes. It was right in
front of me! That is SSS.

I sheepishly looked at her. She seemed amused, smiling at me as I must
have appeared silly to her, when in fact I really could not read to
save my life if I had to. I mean it is just like being legally
"blind"! I just went about my life again. I have gotten used to ignore
situations like this, and not to justify my SSS because it is not well
known. I pick the people I do explain carefully in order to protect
myself...

I have dark ones and light ones that are fine. A previous lighter
color filter helps me to see. Sometimes you just have to listen very
hard to the symptoms, look for patterns of efficiency and when light
defeats you. I will see Helen Irlen when I find myself in a bind with
my SSS and I need her help. I will go and see her if I need to. I
figured my SSS out pretty good.

Sometimes I have to be patient, this last time that I needed to figure
out my color filter glasses took me over a year. Thank G-d that my
previous colors worked for me even if limited, but they were good
enough. The trick is to keep at it. I can tolerate light more but I am
not out of the woods yet as I need to wear my color filter glasses.
They are my helpers for me to be able to see, and live my life as
normal as possible.

Tesa, I am busy with my writing for a while. You are welcome to
contact me here at this website.

Lu

Hello,
I am a mother of two boys. My oldest is 13 and in the 8th grade. We
have foundout last Tuesday that he is serve Scotopic. He only sees
one word on a page. All these years in school he hated to read,did
not comprehend very well and had a really bad handwriting. He would
sit on his legs in his chair and to take Taas test they would put him
in the corner. He has always made A & B's....he had to work for them
and study alot, but he has done it.  He is going to a different
school district and they are the ones that have found it....not
really all the Glory goes to God...if it weren't for God the doors
would not have been open for him to attend this other school
district.  Any way I have lots of questions and am just amazed at
SSS...I have blamed myself for him having to struggle this long. But
he does make the good grades and no discipline problems...he was in a
one on one Title class in 3rd grade but they said he just needed to
learn how to take test...So here we are now...He has tested for
double purple and oh my the difference in his study time and
comprehension....I am looking for colored notebook paper...however I
think we will have to make our own. The legal pads are to light and
he says they are starting to look white.  He plays basketball and has
since 2nd grade...he is really good and has even played on an Elite
team...so his distance perseption is good....however when he looks at
purple paper to read is he supposed to see everything on the
page...he still sees just about 3 words..on white paper he only saw
one word...he will go under a 504 plan in school...I am trying to
find out everything I can about SSS so I can help him see what I see.
Will he ever see what I see or does the color paper just improve from
the white paper?  I appreciate all your help.  I would even be will
to give out my phone number for someone to talk to in person.
God Bless and Thank you,
Tesa

Anyone know a diagnostician in the Bay Area (San Fran), Calif.? Please respond
off-list to julie@....

I've spoken with the friend of a friend by phone. She is 61, developed extremely
dry eyes two years ago, has been diagnosed with Thygeson's (lesions on cornea,
now calmed by steroids in eye).
Artificial tear ducts have not helped.
She used to be light sensitive, now she is hyper light-sensitive to the point of
it affecting her life significantly.
She cannot look at a computer screen, cannot look at people with comfort, has to
do her public speaking with the lights turned off over her, etc.
Anyone else have dry eyes and light sensitivity or Thygesons's?
This woman does not report headaches or decreased span.

******************************************
Julie Evans, M.Ag.
Certified Irlen Screener
502 Riverside Dr. NE
St. Cloud, MN  56304
320-251-7493
julie@...
www.ReadingAndLight.com
Irlen Syndrome can include problems with: reading (blurring, etc.), headaches,
eyestrain, light sensitivity, attention
******************************************




[Non-text portions of this message have been removed]

Hello,

	 This is the Yahoo Support Group Glimmer IT IS a place to search for,
and receive SUPPORT for SSS or Light Sensitivity and the life problems
associated with SSS or Light Sensitivity worldwide.

	 What does that mean?

1) It means briefly that this is NOT a place to DISCUSS the following:

		 A) Politics on any level
		 B) Religion on any level
		 C) Sex on any level

UNLESS, they relate DIRECTLY to your personal SSS or Light sensitive
and HOW they relate DIRECTLY to SSS or Light sensitivity. Each
incoming mail will be approved now before it is releases to the messages.

NOTE: a DISCUSSION is different than a COMMENT.  DISCUSSIONS involve 2
or more PEOPLE ON the messages posted.  A comment is simply that-a
comment by ONE PERSON.

Sex is a "dicey topic" and must be handled [if/when it comes up] in a
mature manner and ONLY if it CLEARLY relates to SSS or Light
sensitivity in SOME MANNER Please.

2)  "Flames" are NOT allowed.  "Flames" are when one list member posts
scathing remarks that will incite another member directly to the messages.

3) Please answer the message at the top of the message not below it.
It is a lot of reading to find out what the reply is.

4) YOUR POST WILL BE IN DANGER OF BEING APPORVED OR DELETED. There was
never a reason before for these rules as most are mature enough.  It
is no comment on anyone's social abilities; it is an AID to DIGEST
incoming messages.

5) Do NOT FORWARD messages received OFF –THE- MESSAGES BOARD.  Nor
should you forward a message from Glimmer to somewhere else, unless
all of the persons writing the post agree that you may.

6) Consider taking discussions that have moved toward a complaint
about a list-member, OFF-Message Board and deal with it between
yourselves, or if you feel it absolutely necessary-take it to one of
the moderators.

7) Be aware of our responses and be considerate of others feelings
ie...Members can be rude, have emotional outbursts and act childish.
Give the person a chance to explain and calm down.

8)  If you are unknowledgeable concerning a subject, politely say so
and suggest other sources.

	 9) If in doubt, ask questions.

10) This list is not a "highway in mid-America" with roadsides
plastered with boards.  It is not a place for personal advertising.

======================================== SUGGESTED behaviors:

1) I would like to institute a policy where in EVERY POST TO THIS
Message Board there Should BE, at least ONE, "Suggested On Topic
Remark."  [SOTR]

	 What is a Suggested On Topic Remark [SOTR]?  For us that is
easy-somehow most of our Post-SSS or Light Sensitive world is affected
by our SSS or Light sensitivity.  When you write a post try to ensure
that SOMEWHERE IN IT, at least one sentence relates directly to SSS or
Light sensitivity.

***************This is NOT a RULE, it is a SUGGESTION only.

2) Using the "/Screen Name" standard accepted as the norm in the
Messages, on This message board is HIGHLY SUGGESTED.

3) PLEASE SIGN YOUR POSTS WITH EITHER YOUR "SCREEN NAME" or a NICK
NAME you would like to be known by!  This may eventually be changed to
a rule, but not yet.  Please be considerate.

4) Please change the SUBJECT line to reflect the CONTENT of the message.

5) Please show compassion whenever you can.

===================================

	 This is NOT the Military, and this message board of rules are NOT a
"break one and be removed from the list," sort of thing at all!  My
[and others] experience with SSS or Light Sensitivity is that a "Frame
Work" is very helpful.  This message board of rules and suggestions is
exactly that-a Frame Work written to enable easier and better
communication between list members.

	 These rules are no more "written in concrete" than are these words on
your screen.  If as time goes by, a certain rule proves to be defined
improperly, or appears to clearly no longer be needed, then of course
we can all get together off-line and come up with a "fix."

	 It is both Glimmers' goal to provide a safe place for SSS or Light
sensitivity sufferers to exchange ideas and be "social."  There has
been much discussion about these rules, and it is my hope that they
will help the list meet that goal.

	 It is my intent that I contact a person apparently breaking a rule,
OFF-message board initially.  Only after I or another moderator,
Glimmer management determine that person makes a major habit of
breaking the rule, that I find message board moderator have to enforce
it by initially removing them from the message board for a period of
time, say a week, growing in length if the problem increases.

	 Nobody's PERFECT, certainly not us!   I do NOT intend to use these
rules as a "trip-wire" for expelling someone from the message board.
Frankly?  I doubt that will be anything but a rare occasion.

We have a GREAT Message Board GROUP here!
Lu Toje Hurley

Hi Grasha,

I have been busy taking my new writing class, finish painting my
study, and the chores in life in general. Something I never thought I
would be able to do back in 1998 it is now 2004 and when I think back
of everything that I have accomplished it leaves me humble. No, I
can't ever do what I just to be able to do, but I have let that go,
and hold onto what I can. What I can do…I strengthen it to compensate
for my weakness. All of us who suffer from light sensitivity have
challenges with our light. It appears that you have been no exception
as you also have had negative occurrences in your life outside of SSS.

Every sense I got the glasses from Helen Irlen my life has been
healing…slowly but surely. I was lucky that they helped to facilitated
healing for me. Sometimes too slow for comfort, but I work on not
losing patience. Helen's glasses where the only things that helped me
at the time. I was not born with SSS as mine came from an auto
accident in 1991 from BI. Helen said something to me then that I never
forgot and that was that the more I wear my classes the more my system
will calm down. I was so bad that I did not think it was possible. She
was right. She also said that these glasses couldn't help everyone.

That is why we are first given a screening it can be a confusing
experience, as we don't know how to describe our sensations. It is no
different than when you go to a counseling session. There are no
tangible test to show the damage done to the psyche and the same
applies to the eyes, brain or whatever else may cause SSS. I made sure
that I pointed out my concerns to her during this process so that I
would not have to back peddle later on. I knew that the glasses would
not have all of the answers for me.

My husband and I prepared ourselves for any disappointments from the
cost and when the glasses would not help. We both understood the
possibility that sometimes the glasses would not work due to the light
in the environment. The glasses cannot control the millions of
different light frequencies in the entire environment. It is a science
that has not arrived yet. Maybe having light technicians follow you
everywhere, and where they can adjust the light could help. But how do
you adjust the light from the sun directly? This is why it is
suggested to protect against leaks around the glasses, wear hats,
visors, etc…whether you wear the color filter glasses or not.

On my bad days when I feel I am losing my patience, it is not the
glasses fault, as I knew of their limitations. I knew this was a new
field and her work was still in progress. Including myself and other
notable people who have purchases the glasses, these glasses have been
extremely helpful. Everyone has their own personal SSS journey just
like anyone who suffers from ADD, Dyslexia, or any other neurological
or biological problem, each person who has anything that they need to
work around have their frustrations. I make sure that I stay fair and
appreciate everything in my life, as I don't want to lose out on life
because I am negative.

I am glad that some things are helpful to you, and that they continue
to be that way. I also hope that you will come to grips with your
frustrations like I had to. Stress make your symptoms worse with
anything medical that you are dealing with. After I calmed my system
down from sensory overload from light with many techniques that I
helped me to  learn to deal with my SSS. This helped me move ahead in
my life.

Good luck,
Lu

RE: Feature article on Irlen Syndrome in Minneapolis paper
     This article about Irlen Syndrome appeared on the front page of the Variety
section of the Minneapolis Star-Tribune Tuesday, August 24, 2004. The photo
below (Note: removed to place on this listserve--it is a color photo of a family
of 5 who wear lenses) ran the full width of the page. Above each person was a
little illustration of that person's tinted lenses, with a verbal description of
the tint color and what the tint helps.  (Ex.: Suzanna, 10 Uses pink-purple
lenses to reduce print distortion, dizziness, fatigue, headaches.)
     Many other people were interviewed and were not quoted: Rhonda Stone, author
of The Light Barrier; my neighbor/client Charlotte Henning, a bright teen and
librarian's daughter, who thought she'd have to be a carpenter and now plans to
go to college and become an occupational therapist (she's had lenses from C.
Hay, R. Williams and J. Palapala); Robert Williams, reading professor emeritus
from Colorado State; an MD mom whose son, 8, my client, went from virtual
non-reader to reader immediately with an overlay; Judy Palapala, Minnesota
diagnostician; and myself, Julie Evans, a lenses wearer and screener. Irlen
researcher Robinson in Australia was interviewed via e-mail. Others may also
have been interviewed.
     As a public relations consultant and a former reporter, my guess is that the
reporter was told to write a "balanced story" (meaning find people who disagree)
and my guess is that some of her story got edited out or she was given a tight
word count and had to cut. I know she planned to quote more people and have info
on where people could go for more info; and a photo of overlays and possibly
books was planned. I'm disappointed with aspects of the story and some
inaccuracies since I spent about 10 hours working on it (compiling background
and contact info, contacting sources for permission to give their names, etc. )!
However, it's great to get exposure in the state's largest newspaper and some
people will get help, no doubt.
     I had sent notes to reporters at the Star-Trib before suggesting this as a
story idea, but a brief e-mail in early June complimenting this writer's feature
on melanoma and suggesting this topic resulted in this feature. PR does take
time, persistence and luck!
     Below the story is info on how YOU can write a letter to the editor with
YOUR opinions about Irlen treatment or this article.
Julie Evans

       out




       Last update: August 23, 2004 at 2:51 PM
       (above headline) Advocates of a treatment program developed by California
psychologist Helen Irlen say that tinted glasses can reduce eyestrain, fatigue,
even headaches. Medical experts are not so sure.
       Color my world
       (photo of Adams family ran just below headline... spanning entire page
width with a tiny pair of tinted lenses above each family member)
       Donna Halvorsen,  Star Tribune
       August 24, 2004 HALVAR0824
       When Jim Adams went to college, he chose accounting because he thought the
reading would be less daunting than in other majors.

       But in required courses outside his major, he encountered the heavy
reading he was trying to avoid, and he quickly fell behind. His wife, watching
him struggle, read some of his textbooks onto tape. He eventually earned degrees
in accounting and business administration.

       Adams, 38, of Crystal, said he could see only a letter or two at a time
and often misunderstood words, which seemed to jump around on the page. Remedial
reading classes in school didn't help.

       In his early 30s, he met a librarian who had taken a five-day course
taught by Helen Irlen, a California educational psychologist. In the early 1980s
Irlen identified a visual perception disorder called scotopic sensitivity
syndrome, also called Irlen syndrome. It is not officially recognized by the
medical community.

       The librarian offered Adams a simple treatment that is the hallmark of
Irlen's teaching -- tinted eyeglass lenses and colored overlays on printed
materials. He said it helped him read without difficulty. The treatment also is
used for eyestrain and headaches.

       The controversial treatment has gained some credibility through research
and is officially recognized in schools in Texas and Australia. Researchers say
the syndrome, involving poor visual perception and light sensitivity, affects 12
percent of the population. Still, ophthalmologists continue to oppose it as a
questionable diagnosis and unproven treatment.

        (illustration - swirl distortion page on p. E4) People with Irlen
syndrome may see words on a page like this.'reading By The Colors' By Helen
Irlen
       "There's zero scientific evidence that this even represents a distinct
syndrome," said Michael Marmor, a professor of ophthalmology at Stanford
University and spokesman for the American Academy of Ophthalmology. "It's also
hard to evaluate their treatment because they never published exactly how they
determine the color that they claim is therapeutic."

       Dr. Daniel Amen, a California neuropsychiatrist, said he initially thought
the treatment was silly, until a friend tried the colored Irlen lenses for her
headaches -- and was cured. "I see many, many patients who get great benefit
from this," he said. "If somebody says it's not real, they're either
closed-minded or uninformed, because it's real."

       Used in schools

       Irlen developed the treatment while researching adult learning
disabilities at California State University at Long Beach in the early 1980s.
Some people, she theorized, can't tolerate certain light wavelengths, which
create stress in the brain.

       In her patented treatment, the offending wavelengths are blocked by
colored plastic sheets, called overlays, that are placed over printed material
or by tinted eyeglasses. Both are intended to calm the visual storm in the brain
and reduce distortions on printed materials.

       "I always tell kids, 'It's not your fault.' " said Irlen, who continues to
see clients at her California clinic.

       Irlen also sells the materials and offers training, often to teachers,
reading specialists and psychologists. She controls the formula for the lenses
and overlays, which critics say hinders basic research into her theory.

       In Texas public schools, 2,500 educators have been trained to give Irlen's
screening tests. Children who are struggling with reading are sent to an early
intervention team that includes an Irlen screener. "Everyone who's been using it
sees the success of it,' " said Pat Johnson, a clinical neuropsychologist who
first tried the Irlen approach in the late 1980s. Teachers "started seeing
children who hadn't been able to pass state tests, and once they got their Irlen
overlays they were able to. This seemed to be the missing piece."

       Minnesota has not recognized the Irlen syndrome as a cause of reading
difficulties, but it is used by some educators. Bonnie Schwartz, a reading
specialist with the state Department of Education, said parents whose children
are poor readers should try every approach available, including colored
overlays. "When your child is struggling, leave no stone unturned," she said.

       Black print on white paper can cause eyestrain, "and everyone would
probably find a personal color that make eyestrain less," Schwartz said. Yet the
overlays won't be the sole answer for children with reading problems, she said.
"I've worked with hundreds of children over the years and no two are really
alike in whatever challenge is preventing them from reading at grade level.
Sometimes it's completely related to vision and visual perception, but most
often there's other things going on."

       Irlen said her treatment is not a cure-all or a method of instruction but
"a piece of the puzzle" for some people who have visual perception and reading
problems. "We've never claimed it to be other than that."

       Research questions

       Even supporters of the Irlen method concede that the research has been
mixed. Some studies have shown that the lenses and overlays work, while others
have been inconclusive or negative.

       In a 1993 survey of 267 people who used the filters for more than five
years, researchers in Australia found that more than 90 percent of those who
responded said they could read better.

       Another study, published in June in the Australian Journal of Learning
Disabilities, found that third-graders with Irlen syndrome in two schools in
Yakima, Wash., gained more than a year in reading skills after using colored
overlays for three months. The research paper did not mention how many children
were in the study, however.

       In 1999, researchers in New Mexico tested the Irlen theory by measuring
electrical signals from the brains of 16 people using a technology called MEG.
The subjects were asked to look at a checkerboard, half wearing Irlen lenses and
half without. The MEG scans showed that people wearing Irlen lenses had a more
"organized" pattern of signals, suggesting that the lenses "provide for
normalization and crystalization of visual information," the researchers wrote
in a study that was never published but is cited by Irlen advocates.

       Another study of reading comprehension in 1990 gave Irlen lenses to 11
people and standard reading glasses to 11 others, and measured their reading
before and after. Those who used Irlen lenses "did not show any significant
gains" in reading, the study found.

       Critics say the studies have been small, and often have been done by
people who are advocates of the therapy. Marmor, of the ophthalmology
association, said that what looks like success for Irlen lens users actually may
be "a placebo effect where things don't work, but somebody desperately wants to
get better and hopes it'll work."

       He conceded that the colored lenses may act like sunglasses for some
people, offering them some relief. "The fact that a few individuals say they're
better doesn't mean this is medical therapy," Marmor added.

       Studies have suggested that Irlen syndrome is hereditary, which may
explain why Jim Adams' family has found the colored lenses beneficial.

       His children, Marty, 8, Suzi, 10, and Breanna, 12, all wear the tinted
eyeglasses for a variety of problems, including reading fatigue and distortion.
His wife, Liz, also wears the tinted glasses for fatigue, especially at the
computer and under fluorescent lighting.

       He is convinced the lenses are helping. "When I told my mother about it,
she was in tears," said Adams. "She said, 'I wish we had known this.' She went
through the school system trying to get help, and nothing was helping. It's very
emotional for her, I guess for me, too."

       Liz Adams said her children had struggled in school, and now are thriving.
She said it was worth spending up to $700 for each pair of glasses.

       "They are a life-changer," she said. For her husband, "some of the changes
have been in patience, depth perception, less distortion in text,
self-confidence, loss of panic attacks, less depression and being able to see a
stable world. Everything has changed for the better in Jim's life since he has
worn his Irlen filters."

       Donna Halvorsen is at dhalvorsen@....



       Callouts on p. 1, Variety section:

       "Parents aren't as concerned about research as they are about what works."
Jim Adams, Crystal

       "If you simply claim something works, that's an anecdote, that's not
science." Michael Morman, spokesman for the American Academy of Ophthalmology

       ----------------

       How to participate in the Opinion pages
       2002 Star Tribune
       March 12, 2002 PARTICIPATE
       We welcome contributions from readers, whether in the form of letters, the
extended letters we call Counterpoints or articles for the Commentary page. Our
address is Editorial Department, Star Tribune, 425 Portland Av., Minneapolis, MN
55488. Submissions may be sent by fax to 612-673-4359. Letters and other
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       http://www.startribune.com/stories/1519/2003227.html   )

       Please specify whether your article is intended as a letter, Counterpoint
or Commentary, although we must make the final decision ourselves.

       We require that all submissions be exclusive in Minnesota. All must
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       Letters should be brief, up to 250 words. Counterpoints should be no
longer than 500 words. Commentary articles should be kept to 700 words. Please
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       We select, edit and publish material as quickly as possible; we give
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a month. Authors of Commentary articles accepted for publication will be
notified within three weeks.

       ----


       Return to top


******************************************
Julie Evans, M.Ag.
Certified Irlen Screener
502 Riverside Dr. NE
St. Cloud, MN  56304
320-251-7493
julie@...
www.ReadingAndLight.com
Irlen Syndrome can include problems with: reading (blurring, etc.), headaches,
eyestrain, light sensitivity, attention
******************************************



[Non-text portions of this message have been removed]

AAAH, all those glasses!  That can't be a long-term solution.  Maybe a
prescription renewal with all those colours and filters added into one pair of
glasses?  Would that work or is it all just too complicated??  Certainly when I
try more than one pair of glasses, the peripheral light is just too much, and
they don't stay on!
Elizabeth
   ----- Original Message -----
   From: Grasha Stone
   To: glimmercoloredfilterglasses@yahoogroups.com
   Sent: Monday, August 23, 2004 5:04 PM
   Subject: [Glimmer 'Colored Filter Glasses'] Re: Good News


   On Saturday I was able to add two colors and a UV filter to my current RX and
Irlen filters to come up with a combination that appeared to allow me to read
more fluently, although there is still an in-between color problem that I was
not able to resolve.  So, now I am wearing my Irlen filtered contacts, my Irlen
filtered glasses, my UV filtered glasses and reading glasses all at once.  It
appears that doubleing my color seems just as effective as adding the three
colors I choose on Saturday.  Since I am wearing the RX contacts and RX glasses,
taking my actual RX from -2.25 to -4.25, I have to wear a plus +2.00 pair of
reading glasses for distance and switch to a +3.00 for reading.  I have to wear
a bandaid on my nose because wearing three pairs of glasses at once makes them
slip off and cause a major red dent on the bridge of my nose.  All the pairs of
glasses together cause the the glasses to be so far out on my face that there is
significant light leak, all lights, including incandecent blast into my eyes, so
I also wear a hat.  I am pretty funny looking, but oh well, I can see better
than last week.  I was told that contacts cannot be modified (add more colors to
the current colors) but glasses can be modified.  My glasses are the wrong RX so
I don't think it is a good idea to do that.  I haven't made a decision about
what else to put on my face.  The contacts I think are the best for me because
of light leak, we will just have to see, I hope to know more soon.

   > hopefordyslexia <no_reply@yahoogroups.com> wrote:
   >
   > Original message was in HTML, not including.
   >

   --
   Grasha Timmons Stone

         Yahoo! Groups Sponsor
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[Non-text portions of this message have been removed]

It sounds like you are on the right track although wearing that many
pairs of glasses at once must very difficult.  Hopefully, you can
just find a way to get it down to one pair of contacts or glasses.
If you need a different prescription for reading than for distance
vision, you might benefit from "no line" multi-focal progressive
lenses which give you the correct prescription for near, far and
everything in between in one pair of glasses.  Sadly, that kind of
lenses aren't available in contacts, that I know of.  Check with
your optometrist and/or optician and explain that your prescription
is not correct.  If the lenses for your glasses are fairly new, they
might be willing to remake your lenses for you for free or give you
some kind of worthwhile adjustment in price.

--- In glimmercoloredfilterglasses@yahoogroups.com, "Grasha Stone"
<Grasha@S...> wrote:
> On Saturday I was able to add two colors and a UV filter to my
current RX and Irlen filters to come up with a combination that
appeared to allow me to read more fluently, although there is still
an in-between color problem that I was not able to resolve.  So, now
I am wearing my Irlen filtered contacts, my Irlen filtered glasses,
my UV filtered glasses and reading glasses all at once.  It appears
that doubleing my color seems just as effective as adding the three
colors I choose on Saturday.  Since I am wearing the RX contacts and
RX glasses, taking my actual RX from -2.25 to -4.25, I have to wear
a plus +2.00 pair of reading glasses for distance and switch to a
+3.00 for reading.  I have to wear a bandaid on my nose because
wearing three pairs of glasses at once makes them slip off and cause
a major red dent on the bridge of my nose.  All the pairs of glasses
together cause the the glasses to be so far out on my face that
there is significant light leak, all lights, including incandecent
blast into my eyes, so I also wear a hat.  I am pretty funny
looking, but oh well, I can see better than last week.  I was told
that contacts cannot be modified (add more colors to the current
colors) but glasses can be modified.  My glasses are the wrong RX so
I don't think it is a good idea to do that.  I haven't made a
decision about what else to put on my face.  The contacts I think
are the best for me because of light leak, we will just have to see,
I hope to know more soon.
>
> > hopefordyslexia <no_reply@yahoogroups.com> wrote:
> >
> > Original message was in HTML, not including.
> >
>
> --
> Grasha Timmons Stone

That sounds like a very good plan!  It always seems that the
hurriedness of any testing situation is counter productive.
Especailly vision tests, since the first guess doesn't always work
the best in the long run.  It takes using the prescription for
longer periods of time and under different conditions to see how
efective they will really be.
It sounds like you have the same problem that I do, especially
without the proper filters.  Clear vision and concentration just
fail no matter how hard you try, as the end of the test shows.
I sincerely wish you success.  Please let us know how it went for
you.

--- In glimmercoloredfilterglasses@yahoogroups.com, "Grasha Stone"
<Grasha@S...> wrote:
> A little change of plans but it should still work.  I will go to
Wichita tomorrow and actually use a lens kit by myself (Helen's
suggestion).  I will read for extended periods of time using
different colors (several particular sets Helen has choosen) on top
of my current filters to see if anything works.  One pattern I have
noticed is that I can answer the first 20 questions in a section of
the test with good accuracy, then without missing a beat I will miss
all the questions from 19 or 20 all the way through 25.  I cannot
miss eight questions per section and still recieve a decent score.
I can only miss around three or four.  There is no difficulty level
change on the test towards the end of any section, in fact a much
easier question may be the very last one.  Anyway, I hope to know
more tomorrow!  Thank you everyone!  I will write when I get home to
let you all know if I found out anything.
>
>
> > hopefordyslexia <no_reply@yahoogroups.com> wrote:
> >
> > Original message was in HTML, not including.
> >
>
> --
> Grasha Timmons Stone

I just read through all of the recent messages to catch up with
all of you since I haven't been online much because of continuing
computer problems.
   I was so happy to read that Helen is going to work with you
personally, Grasha!  I hope she can come up with some solutions for
you.
   Don't give up your dreams.  Maybe you won't be able to be ready to
take the LSAT tests in just 5 weeks like you hoped, but keep your
hopes and dreams alive and remember, delay doesn't mean defeat.
   I am so appreciative of all of you who been so open and have
shared your experiences.  It is my hope that the things we share
will help others, and that some thing we say or do may bring more
understanding and open the way for a breakthrough.

--- In
glimmercoloredfilterglasses@yahoogroups.com, "kodiak4444444444"
<Grasha@S...> wrote:
> Good News!  I spoke with Helen Irlen today and she is going to
> personally reevalute me by phone.  She asked a lot of questions
and
> then made this suggestion.  More hope. :O).  I will let you all
know
> how it goes.  I don't yet know when it will take place.

Boy, and I thought I had problems!  When it gets to the point of needing
glasses/contacts, uv filters, and 4 overlays, one wonders what the point is!  I
feel the Irlen lenses are along the right track, but the solution is down the
road somewhere when we have had a chance to play with all this information and
learn more.  We are in the beginning of a real breakthrough, but we don't
understand enough yet to help someone like you, and many others who are finding
unexpected problems.  I, too, felt disillusioned when my migraines came back,
like I had a chance at a normal life, only to see it slip away for no apparent
reason.  I feel strongly that my tint is still correct, and it looks the same as
ever, so what now?  It may be that we will never have normal lives and just have
to live this way, but it seems so cruel to have hope and then lose it.  One
either accepts and suffers, or wastes all one's time and one's whole life
pursuing solutions, and using up all one's money in the pursuit.  It's not fair,
but what can you do?  You deserve a chance at your dream, but there are too many
things in the way right now, and maybe always will be.  If the Irlen people do
come up with a solution, I don't think it will be right away, and certainly not
before the LSAT.  I am so sorry for your situation, but don't know what to
suggest.  Just know that, in a smaller way, I am there too.  My migraines are so
crippling I can't plan anything or go anywhere or do anything much of the time
because the world is so painful.  I also see a lot of light distortion and
illusions that frighten me or put me off balance.  Thanks for the suggestion of
Imitrex.  I did try that with no luck, although many have found relief with it. 
I am a dancer, and I have had to give up much of my performing career, and it
even interferes with my teaching, which I love.  Sometimes I vigorously pursue a
cure, and sometimes I just suffer because I don't have the energy to do anything
about it.  Maybe we need to concentrate on just being, and not doing, just
getting through a day and being fully present.  That's my plan for now, and at
least my lenses are helping me still in other ways.
Elizabeth
   ----- Original Message -----
   From: Grasha Stone
   To: glimmercoloredfilterglasses@yahoogroups.com
   Sent: Wednesday, August 18, 2004 9:27 PM
   Subject: re: Re: [Glimmer 'Colored Filter Glasses'] Update


   I am so sorry to hear of your troubles, but it's true, sooner or later one
runs out of money to try other lenses or ideas.  I think this is all much more
complicated than anyone initially thought.
   I AGREE.  WHEN I BEGAN THE PROCESS I WAS UNDER THE IMPRESSION THAT IF THEY
DIDN'T WORK, ESPECIALL THE VERY FIRST PAIR, (BECAUSE IT DID WORK AT MY DIAGNOSIS
EXAM) THAT THERE WAS A PROBLEM WITH A SOLUTION BUT EVIDENTLY THERE IS NOT AN
ANSWER.  I AM PRETTY MUCH OUT OF MONEY AND PATIENCE, SINCE I HAVE SPENT OVER
$1,300.OO (NOT TO MENTION ANOTHER $635.00 FOR MY COUNSINS TO BE SCREENED AND
TESTED) AND HAVE ABSOLUTELY NOTHING TO SHOW FOR IT.  IN FACT ONE COUSIN LEFT THE
EXAM THINKING THE WHOLE THING WAS A SCAM AND HE HASN'T EVEN ORDERED HIS GLASSES
SO THAT WAS A COMPLETE WASTE.  IF THERE WOULD AT LEAST BE SOME HOPE IF SOMEONE,
ANYONE, HAD SOMETHING FOR ME TO TRY THAT HASN'T BEEN TRIED.  THERE IS JUST
NOTHING.  IT IS TOO LATE NOW ANYWAY, THE TEST IS IN FIVE WEEKS, NOT ENOUGH TIME
TO GET A PAIR OF CONTACTS.  EVERYONE AT IRLEN DID WHAT THEY COULD FOR ME AND
THEY JUST SEEM TO BE OUT OF IDEAS.
   Last year, I had only about 5 migraines a month for 2 months, June and July,
after getting my glasses in April, compared to one every day for years.  Then I
began to lose it and settled into a pattern of about 15/month, half of what I
had been experiencing.  This June I had 17, July wasn't any better, and August
has been hell.  At first I thought it was the light change between summer and
winter, but now that summer came around again, I didn't find the relief I did
last summer.  Peripheral light could also be a problem, but I can't wear
contacts, and even if I could find some kind of  wrap-around glasses that would
be suitable for Irlen lenses, I can't afford a new pair right now.
   HOW AWFUL ABOUT YOUR MIGRAINES.  I AM VERY THANKFUL THAT I DO NOT HAVE THOSE. 
I HAVE SMALL HEADACHES, ABOUT ONE A DAY, BUT THEY ARE COMPLETELY MANAGABLE. 
BEFORE IRLEN I WASN'T EVEN REALLY AWARE OF HOW MANY I HAD.  HAVE YOU TRIED
EMETREX IMETRX EMITREX (SP?).  ALL THE PEOPLE (ABOUT FIVE) IN MY FAMILY THAT
SUFFER FROM MIGRAINES ARE NOW TAKING THAT MEDICATION AND THEY LOVE IT.
   Also I find my lenses great for outdoors and incandescent li! ght, but
fluorescent light still makes me very ill, glasses or not.  I can't afford a
separate pair for fluorescent lighting.  It is a problem for all of us, some of
whom have one pair for outside, one for inside, etc.  Why the lenses work so
well for awhile, and then not so well, I don't know, but I still get a good deal
of daily relief from my lenses, and see so much more clearly through them, so I
still value them a great deal, and they do still cut down on the migraines. 
Wish I could get rid of them altogether!  I don't know what to suggest you do,
since you sound like you are at the end of your rope!  Hang in there!
   I REALLY WISH MINE WERE STILL GOOD FOR INCANDESCENT LIGHT AND OUTDOORS.  THEY
WERE FOR AWHILE.  THEY NEVER WERE GOOD FOR FLOURECENT.  I BOUGHT THE CONTACT
LENSES HOPING IT WOULD ALLOW SOME HELP IN FOURECENT BUT THEY DIDN'T WORK.  I
SENT THEM BACK TO IRLEN FOR COLOR TESTING BUT THE COLOR WAS FINE.  THE USE OF
READING GLASSES HELPS SOME WHILE READING (THANK YOU HARVEY), I BOUGHT THREE
PAIRS, BUT IT DOESN'T CORRECT ENOUGH TO TAKE THE LSAT.  I THOUGHT IT WAS THE
LACK OF UV FILTER PROTECTION, I BOUGHT FRAMES AND UV LENSES, BUT I GUESS NOT, I
THOUGHT IT WAS THE LIGHT LEAK BUT I GUESS IT ISN'T, I THOUGHT IT WAS CAFFIENE
BUT NO, I HAVE TRIED SO MANY THINGS.  IN ORDER FOR ME TO COUNT SIX X'S IN A ROW
WITH THE SCREENING MATERIALS I HAVE TO WEAR MY IRLEN FILTERS, A UV FILTER AND
HAVE FOUR OVERLAYS.  I HAS COMPLETELY TAKEN OVER MY LIFE SINCE MAY 30TH.  TRYING
THIS AND TRYING THAT BUT NOTHING WORKS AND NOW I AM OUT OF TIME TO ACCOMPLISH
THE ENTIRE PURPOSE FOR STARTING THIS VENTURE, THE L!
   SAT.

   CHECK ON THE MIGRAINE MEDICATION, IF YOU HAVEN'T ALREADY.  I THINK IT IS SORT
OF NEW, A COUPLE OF YEARS.
   Elizabeth
   > <ellysia@...> wrote:
   >
   > Original message was in HTML, not including.
   >

   --
   Grasha Timmons Stone

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[Non-text portions of this message have been removed]

I am so sorry to hear of your troubles, but it's true, sooner or later one runs
out of money to try other lenses or ideas.  I think this is all much more
complicated than anyone initially thought.  Last year, I had only about 5
migraines a month for 2 months, June and July, after getting my glasses in
April, compared to one every day for years.  Then I began to lose it and settled
into a pattern of about 15/month, half of what I had been experiencing.  This
June I had 17, July wasn't any better, and August has been hell.  At first I
thought it was the light change between summer and winter, but now that summer
came around again, I didn't find the relief I did last summer.  Peripheral light
could also be a problem, but I can't wear contacts, and even if I could find
some kind of  wrap-around glasses that would be suitable for Irlen lenses, I
can't afford a new pair right now.  Also I find my lenses great for outdoors and
incandescent light, but fluorescent light still makes me very ill, glasses or
not.  I can't afford a separate pair for fluorescent lighting.  It is a problem
for all of us, some of whom have one pair for outside, one for inside, etc.  Why
the lenses work so well for awhile, and then not so well, I don't know, but I
still get a good deal of daily relief from my lenses, and see so much more
clearly through them, so I still value them a great deal, and they do still cut
down on the migraines.  Wish I could get rid of them altogether!  I don't know
what to suggest you do, since you sound like you are at the end of your rope! 
Hang in there!
Elizabeth
   ----- Original Message -----
   From: kodiak4444444444
   To: glimmercoloredfilterglasses@yahoogroups.com
   Sent: Tuesday, August 17, 2004 12:35 AM
   Subject: [Glimmer 'Colored Filter Glasses'] Update


   Hello Everyone,
   I haven't been on for awhile because I have been trying to come up
   with solution to make my Irlen Filters work.  I have been
   unsuccessful.  I tried UV filter glasses, tried correcting my vision
   more through my eye doctor, tried reading glasses (which helped some
   thanks to Harvey at Irlen for that tip), tried overlays with the
   lenses.  Nothing works.  My diagnostician said she has no idea why
   they don't work and has no suggestions.  So, I am out of money and
   deprived of hope.  Thank you all for being so supportive and wish me
   luck on the LSAT.  I may not actually even take the test since I am
   scoreing so low on it now.  I wish I could tell you all what changed
   or what happened but I don't have the answers and neither does the
   Irlen Institute.  Just say a prayer that God will make them work on
   test day.  Cathryn Hay is generously helping me get accommodations
   to wear a hat, it is the only chance I have left.  My Irlen
   experience is over and I am left with grieving for once having hope
   that is now gone.
   Grasha



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[Non-text portions of this message have been removed]

Hi Grasha,

I am sorry to hear of your frustrations with the color filter
glasses. It is a puzzle to me when they work… and then… they do not,
expecially more recently. I have wondered if the light from the sun
or ? has had anything to do with my shifts in color filter glasses. I
put them on and take them off task-per-task to get around this. I do
a lot more squinting now. The trick I discovered from myself is to
keep my system calm (as much as possible). I avoid light or
environments that challenge my system this way, but it is a Russian
roulette.

When taking the LSAT I hope that you have a doctor's slip asking them
to help you with the lighting in the environment. It would be sad to
be defeated by light sensitivity symptoms. Perhaps Helen can help
whit the slip? I don't know.

Because I can tolerate light better (in that) I don't suffer from
light induced seizures like before, however, I am not out of the
woods yet as I suffered from one in the recent past. It was bad for
me as it caught me off guard. Need I say my whole day was ruined all
due to my system not being able to tolerate the light frequency that
I had been exposed to. I can be fine under certain light, and
previously doing fine, and then not. It reminds me of what I have
learned about seizures…they hit when they hit…sometimes out of no
where reducing you to not being able to care for yourself.

Currently, for me when I can't wear my glasses or calm my system down
it means that whatever I am working on is at risk at not being able
to be done. Even down to making a simple sandwich. If I am hungry I
will stay hungry until my husband comes home, and if that is in six
hours then I will have to wait until six hours. Thank goodness for
peanut butter, fruit and frozen burritos as I can do these when I am
at my worse.

I am glad that Harvey was able to shed some light on reading glasses
for you and that they helped. I can't wait to see Helen again as I
need her help. Before I do I need to see the eye doctor at UCI first?
Regardless of all of my current challenges with my color filter
glasses Helen and these glasses have been an extreme God sent to me.
I have no regrets… Of course I wish that I could get my system under
control from light sensitivity as that would mean that I can be more
involved in the tasks I need to do that show I am an exciting and
capable person. Sadly, it all gets lost when my system gets sick from
light sensitivity symptoms…I can feel real dumb at times as I can't
take care of myself or do even the simplest tasks in life until my
system calms back down, and that can take forever according to what I
need to get done.

Hang in there I know how hard it is to lose hope when your system
cannot do a task because of light sensitivity :(

Please keep us informed on your progress as sharing our information
might help someone here.

Lu

Hi Julie,

It appears Julie that something more is going on with the use of my
color filter glasses. I don't quite understand your mist, but that
does not mean anything. Light sensitivity or SSS is a field in its
own. Every patient is different and every color filter glasses as
well. The only help we will ever realize is through doctors who deal
with this in the physical aspects of the human body.

Yes, the mist is like a mirage, but mine does not waverly like on an
asphalt hot top. The sparkle I do understand, but my mist glows more
than sparkles. I don't know if it is the same as yours though? It is
sort of pretty, but it is distracting, as I have to stop and look
around to see where it is coming from. It is just there when the
windows are opened to let the nature in. I love to see nature.

The waverly symptom I do have in my eye is not with light but a
circle of interrupted fast intermittent dark-gray clouding around my
pupils. I use to think it was the beginning of cataracts. However,
the eye doctors I have gone to see don't see any. Just floaters,
which everyone has, I think. It is too bad you can't wear contacts. I
use to do fine with my contacts, and they were the best thing to
chocolate, until my eyes started to get wacky on me with the colors.

The only thing I can do is to manage the light in the environment as
best I can. It happens fast for me, as when my system starts
to "crash" too fast. Sometimes all I can do is lay down, turn all the
lights off, and/or close my eyes. Oh well..what can I do? As I am a
hostage around certain lights or environments where the lights bother
me :(

I am keeping a track of my symptoms and looking at them differently
since realizing that I need different glasses to accomplish different
tasks. Today I put on a pair of orange glasses because of needing to
do a different task, as I was having a hard time doing it and the
other glasses I was wearing that were not helping me to do the task…

It was a mistake as it set off a seizure! A light (color induced?)
seizure? I could not believe it, but it did, I thought this
sensitivity was long gone, but it was not. Ruined my day by not being
able to do the chores I needed to at home. I was having a such a good
day till then. Shucks. At least I can be on the computer.

Now that I am studying my symptoms in regards of needing different
glasses for different tasks, as I understand that I need to change my
glasses for different tasks. What a headache this is turning out to
be for me. I won't know until I see a pattern in my notes until I see
the UCI eye doctor and Helen again.

I am keeping a very tiny small journal easy for me to stick somewhere
conveniently. What is sad is that when I am under certain light (or
doing a task), and I don't have the right color glasses. Still
waiting on Maryland who is with Helen to call me. I will give her a
little more time and call again. I know that she is busy and is not
in all of the time I guess.

The light affects me differently now… I am taking medication, which I
suspect is making my light sensitivity worse. I don't know.  I
started the medication on Friday (July 16th). I have to wear my
glasses most of the time now since Sunday as my system collapsed. I
worry it will not get any worse. I hope that when I stop taking this
medication my light sensitivity will get better again quickly.

Chow,
Lu

Lu,
Maybe I have the same kind of mist but I never thought of it as a mist. : )
Here's what happens to me--In bright light without my lenses, it's almost
like a mirage feeling. Like that mirage look that rises from hot blacktop on
a hot, hot day. (People without Irlen see that, too, I think.) I haven't
always had light sensitivity and I used to see it. : ) It's kind of a
wavery, sparkly look. I see it out the side of my Irlen glasses on bright
days. If I hold my hands around my Irlen lenses and cut out all light leak,
I don't see it peripherally. I can't wear contacts but feel contacts would
make it go away. I wear a big navy blue hat and that helps on days like
today when I went boating.
I just read that Selenium (mineral) improves insulin use in the body.
Interesting. I used to take it daily and don't right now except 50 mcg in my
multi-vitamin. If I take 200 mcg in a supplement, I get a strange headache,
so I used to take 100 mcg. I'm chemically senistive and selenium is a great
antioxidant; it takes 4 days to really kick into your system and then I can
handle chemicals twice as long. However selenium is fat soluble, so I don't
take it all the time.
Julie



----- Original Message -----
From: "amluhu" <no_reply@yahoogroups.com>
To: <glimmercoloredfilterglasses@yahoogroups.com>
Sent: Saturday, July 17, 2004 1:10 AM
Subject: [Glimmer 'Colored Filter Glasses'] Julie I met a woman who has my
symptoms of changing her glasses!


Hi Julie,

No you did not respond to this, but now you have, so thanks are in
order for you. It is not light film but a light-smoky-haze. It's like
this very fine white smoke than hangs in the air like a very fine
sheer veil that blankets everything with continuous mist, It
behaves like light streaming in from the window, but without any dust
floating around in it. It's a darned thing to describe.

I wish I could also answer why I see this smoky-white-haze. For now I
am okay.  I met a woman who told me about her eye doctor at UCI who
diagnosed her. He explained to her that the muscles in her eyes do
not function well. She also suffers from LS. I asked her if when they
shine a light into her eyes if her pupils respond to light, and she
said yes.

I thought about my experience when doctors (use to) flash light into
my eyes to see the reaction of my eyes. They did not see anything
wrong with the functions of my pupils. I did however wonder why they
would look longer at them. However, her eye doctor at UCI knows
exactly what her problem is, and explained it to her and what the
problem was.

He said to her that because her eye muscles do not function like they
are suppose to under certain light. She has to wear different
eyeglasses for different task. When she told me this, a hundred light
bulbs flashed in my brain. That is exactly what I have been doing. I
use my color filter glasses now for different tasks. I can tolerate
light more, but light is still a major factor.

In order for me to do tasks I need to wear different eyeglasses. I
was doing this on my own. I guess I kept holding on to the pattern of
when I first got my color filter glasses and when I wore them 24/7. I
thought if I don't need to wear them 24/7 then I don't have the
problem.right? Wrong. When I went to see Helen and after she gave me
a recheck she said, "You are not out of the woods yet". I got another
two set of color filter glasses then they stopped working like the
other pair, as the colors did not seem to work.

Now I do what this lady does and that is wear different glasses for
different tasks. I am going to start to keep a journal and make some
sort of percentage of when the light bothers me when I am doing
certain tasks.

The lady I met recently whose eye doctor is from UCI was not been
able to give me any more details. I am waiting to hear from her: the
name of her eye doctor, and what is the diagnosis he gave her. I
remember seeing an eye doctor who told me that I suffer from
neuropathy in my eye. Neuropathy is worsened when you eat carbs
(white processed bread like donuts, candy bars, cookies.you know all
the good tasting stuff.).

It makes sense about the enzymes improving your light sensitivity
problems. I wonder if this has been happening to me when I take
supplements? I better start taking a journal on everything I do and
if I notice any affects until I see a solid pattern. I hope I will.
I may have to hold off on seeing Helen for another month, but maybe I
need to see this eye doctor first at UCI.

I called to speak to Helen not there. Bev took a message on Wednesday
(July 14th). That Helen's screener, Maryland (sp) would call me, but
she never called me. I waited as Beverly from Helen's office said she
would, but I have not heard a word from her.  It is now Friday the
16th and still no response. I guess she is still too busy. It is okay
as I am getting somewhere on my own. I have been having a lot of good
information come my way that is helping me to know what type of a set
up for my color filter glasses I need to work on.

I know that I need to have this information from this eye doctor to
give to Helen first. Which can explain why I have to keep changing my
glasses.now I know when for different tasks. My neuropathy in my eyes
may have gotten better somehow. I wonder if this is related to SSS,
and why we struggle with our color filter glasses sometimes. I was
solid for years from my color filter glasses until I was hurt by this
bad chiropractor. Why? I don't know. Questions, after questions.

When I get this eye doctor's name and address I will make an
appointment to see him. I will let you know when I do this, and the
outcome.also I will post what is his name, phone number, and
diagnosis (he gave her).

Chow,
Lu








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Hi Julie,

No you did not respond to this, but now you have, so thanks are in
order for you. It is not light film but a light-smoky-haze. It's like
this very fine white smoke than hangs in the air like a very fine
sheer veil that blankets everything with continuous mist, It
behaves like light streaming in from the window, but without any dust
floating around in it. It's a darned thing to describe.

I wish I could also answer why I see this smoky-white-haze. For now I
am okay.  I met a woman who told me about her eye doctor at UCI who
diagnosed her. He explained to her that the muscles in her eyes do
not function well. She also suffers from LS. I asked her if when they
shine a light into her eyes if her pupils respond to light, and she
said yes.

I thought about my experience when doctors (use to) flash light into
my eyes to see the reaction of my eyes. They did not see anything
wrong with the functions of my pupils. I did however wonder why they
would look longer at them… However, her eye doctor at UCI knows
exactly what her problem is, and explained it to her and what the
problem was.

He said to her that because her eye muscles do not function like they
are suppose to under certain light. She has to wear different
eyeglasses for different task. When she told me this, a hundred light
bulbs flashed in my brain. That is exactly what I have been doing. I
use my color filter glasses now for different tasks. I can tolerate
light more, but light is still a major factor.

In order for me to do tasks I need to wear different eyeglasses. I
was doing this on my own. I guess I kept holding on to the pattern of
when I first got my color filter glasses and when I wore them 24/7. I
thought if I don't need to wear them 24/7 then I don't have the
problem…right? Wrong. When I went to see Helen and after she gave me
a recheck she said, "You are not out of the woods yet". I got another
two set of color filter glasses then they stopped working like the
other pair, as the colors did not seem to work.

Now I do what this lady does and that is wear different glasses for
different tasks. I am going to start to keep a journal and make some
sort of percentage of when the light bothers me when I am doing
certain tasks.

The lady I met recently whose eye doctor is from UCI was not been
able to give me any more details. I am waiting to hear from her: the
name of her eye doctor, and what is the diagnosis he gave her. I
remember seeing an eye doctor who told me that I suffer from
neuropathy in my eye. Neuropathy is worsened when you eat carbs
(white processed bread like donuts, candy bars, cookies…you know all
the good tasting stuff…).

It makes sense about the enzymes improving your light sensitivity
problems. I wonder if this has been happening to me when I take
supplements? I better start taking a journal on everything I do and
if I notice any affects until I see a solid pattern. I hope I will.
I may have to hold off on seeing Helen for another month, but maybe I
need to see this eye doctor first at UCI.

I called to speak to Helen not there. Bev took a message on Wednesday
(July 14th). That Helen's screener, Maryland (sp) would call me, but
she never called me. I waited as Beverly from Helen's office said she
would, but I have not heard a word from her.  It is now Friday the
16th and still no response. I guess she is still too busy. It is okay
as I am getting somewhere on my own. I have been having a lot of good
information come my way that is helping me to know what type of a set
up for my color filter glasses I need to work on.

I know that I need to have this information from this eye doctor to
give to Helen first. Which can explain why I have to keep changing my
glasses…now I know when for different tasks. My neuropathy in my eyes
may have gotten better somehow. I wonder if this is related to SSS,
and why we struggle with our color filter glasses sometimes. I was
solid for years from my color filter glasses until I was hurt by this
bad chiropractor. Why? I don't know. Questions, after questions.

When I get this eye doctor's name and address I will make an
appointment to see him. I will let you know when I do this, and the
outcome…also I will post what is his name, phone number, and
diagnosis (he gave her).

Chow,
Lu

Lu, did I respond to this?
I'm not a diagnostician and can't address your questions regarding why you
get the light film or keep needing to change lenses, etc.  Wish I could. : )
I've had 3 pairs of lenses in two years and have noticed that diet seems to
affect my light sensitivity. If I eat too many carbs, my eyes don't seem to
work together as well. If I take certain digestive enzymes, my lenses seem
too dark, which would seem to indicate that the enzymes improve my light
sensitivity.
Julie

I simply could not tolerate any form of light or I would have a light
induced seizure.

Rather than:

I simply could, and absolutely not tolerate any form of light or I
would have a light induced seizure.

This happens to me when I can't read and I can't process what I have
written :(

Here is another web site how infra red light frequencies are used for
pain in medicine:

http://www.feelgoodstore.com/ProductInfo.aspx?
ProductGroup_ID=656&src=TLGOO_Lightforce

Hi Julie,

I know you asked Grasha but I wanted to share my history with you
also about the smoky haze to see if you have any ideas. Are you a
screener? If so I hope that you will be able to shed some light for
me on why I have to keep changing my color filter glasses every year
now?

When I got my first color filter glasses, I simply could, and
absolutely not tolerate any form of light or I would have a light
induced seizure. This was very painful for me. I had to screen my
eyes anyway I could think of. I was so sensitive that anything I did
helped, visors, hats, blankets, towels, blinds, etc… Later on when I
got my fourth pair of color combination color filter glasses I
discovered I could tolerate light better. I don't know why…I just
could now. It was at this point that I started to have problems with
the smoky white haze because I was not wearing my glasses like
before.

My fourth pair of glasses (especially my darker ones) were the right
ones for me for about 6 months. They worked like a charm, but then my
system started to have issues again after an incompetent chiropractor
seriously hurt me. I dealt with severe acute and chronic pain.
Migraines galore. My system wanted another set of color filters
again, but I became so confused about how a chiropractor who was
highly recommended could hurt me, and if this was the cause of my new
light sensitivity to my fourth combination to color filter glasses.
Regardless, I also had my hands full with pain so I placed my color
filters on the back burner. I still was able to wear my dark color
filter glasses when I would go outdoors. It was just the light ones I
no longer could wear where I could read. I thought maybe it was the
injury, and perhaps when it would calm down things I would be able to
use my fourth light pair of indoor glasses again.

The problem is that now that I am doing better with the pain from
this neck injury I still can't wear my indoor light glasses to read.
They are fine in any other way but that. I am trying to break in on a
higher level as a writer and this is a huge problem for me.

With my first pair of color filter glasses, glare was a major problem
for me. It was only after my fourth pair of color combination color
filter glasses that the white smoky haze started to appear for me.
When I no longer was wearing the light ones indoors. I don't know
why. Do you have any ideas? I am not satisfied with any explanation I
come up with. I have thought to myself…is it my brain or the cones in
my eyes or something unknown still? Thanks to Robin's NASA website I
do feel comfortable with having new ideas about why my CNS is
responding differently to frequencies of light such as ultraviolet
light…

I just don't think medical science can measure this yet. I would just
love to go into a doctor's office, and get my eyes tested to the
different light frequencies like a regular eye test. The difference
is having an eye test where my eyes are tested by measuring their
response to different light frequencies like ultraviolet, far
ultraviolet, near ultraviolet, infra red, and other electromagnetic
waves of light… (seen or unseen) that makes me sick. It sure would
make people who suffer from SSS (light sensitivity) have easier lives
and take the mystery out when the colors filters change like they did
to me only after six months! I am afraid they will change again after
6 months again after I get the new ones.

One thing I am sure of is that somehow I am healing from the severe
case of light sensitivity I use to have. I don't know why? BI is
healing? Or is it related to something else?  Julie, any light you
can shed will be appreciated.

Lu

Hi Grasha,

I was so pleased with my color filter glasses when I first got them.
They helped calm my system down from light induced seizures, "drunk
walk" (lost of balance and not bumping into people), migraines, not
being able to process simple things like making a bed square, making
a simple meal, dusting, washing the dishes, not straining from taking
care of myself like when I would shower. I was so blessed to have the
color filter glasses as I went down from 50 grandmals a day to where
not I only have on average one a week. Then they are smaller seizures
like myoclonic tics... I am very happy with my history with the color
filter glasses that I sometimes cry when I remember how much trouble
light use to be for me. Light and my central nervous system did not
get along well for some reason after my BI.

The longer I wore them (over 6 years) the more my central nervous
system has calmed down. I am happy that I don't have to be as careful
with light like I was before but I am not out of the woods. I still
am playing around with the color filter glasses as the colors changed
on me. I will go in August to have a recheck to see if I can get rid
of the smoky haze, and other symptoms I currently am having... Helen
is in Belgium and won't be back in a week so I will wait till she is
back in. I spoke to Harvey if he could make me a pair of bifocal
reading glasses with two tones colors. He said yes. Top with the
light color fading into clear (maybe depending on the recheck) so I
can read. I have a hard time when on the computer typing, and reading
from my research. Too frustrating, also when reading my written work
at my writer's group. I need to wait for Helen for a recheck; I will
let you know how it all works out. I got them in contacts and it was
a nice break from wearing my glasses but since I had them changed for
the third time

I have experienced that it takes several trial and errors till the
discovery for the right color filter combination for me. One thing I
can now do as I can tolerate light and other colors in sunglasses is
I go to the stores and try on sunglasses with different colors to see
which one my eyes lean to. It is risky for me as it can set off a
seizure. I make sure I have my husband with me in case that happens.
He can help me out of the store into the car, back home and go to bed
till my system calms back down. I want to do this because I want to
make sure I have ideas for Helen about what colors, etc bother me etc
when searching for the right color combinations. This is advance and
I do not suggest this for beginners with a serious case of SSS. I do
not want to get the recheck and get the wrong color filter
combinations because of something I overlooked to tell Helen.

My history of changing my color filter glasses combination: the first
color glasses I wore for years until my eyes needed to change then I
got another recheck I got my second color match where I went to
halves of two color filters I had, and then third I went for darker
color filters (light only for reading. the dark ones are beautiful
outside still). Now I am working on my fourth color filter glasses
combination for reading. It has been a headache but I finally found a
combination I feel will work. First thought I need to have Helen
check it for me. She is the one who knows what I need more than I do
at this time, as she understands SSS more deeply than I do.

Lu