Our Adventure with Irlen Syndrome

It’s important that everyone knows about Irlen Syndrome, because it is often misdiagnosed or missed altogether and leads to other health problems.  It can be the result of genetics or head trauma including whiplash, concussion or combat.   50% of children with learning disabilities have Irlen Syndrome, and 40% of children diagnosed with dyslexia have Irlen’s syndrome instead.  Irlens is very common for veterans and can cause enhanced PTSD symptoms.

Irlen Syndrome is a sensitivity to light, which sounds simple enough, but the affects are anything but.  In an Irlen patient when certain wave lengths of light hit the eye, confusing messages are sent to the brain.  This usually leads to visual misperceptions.  Words can dissolve into the white page, tremor, or tumble down the page.  It might look sharp and clear in the very center but distorted away from the center.  Items might look like they are glowing, colors might appear that aren’t really there.  Things may look closer or further away than they really are.  Depth perception may be off.   Round letters like o, e, a, and u might look identical to an Irlen child learning to read, making phonics quite confusing.  Square things might look round, including home windows and doors. A genetically triggered Irlen patient may not recognize that they are seeing anything abnormal.  It’s all they’ve seen or experienced and will naturally assume everyone else sees that way too.

Since Irlen Syndrome is a neurological disorder, both optometrists and special education teachers in the United States are largely unaware of it. I’d like to see this change. While it’s true that an Irlen patient’s eyes are not causing the problem, the pathway of the SOLUTION is through the eyes. Often the first intervention for a child with a reading problem is to take them to the eye doctor. How much better could we find and help these kids if eye doctors knew what to watch for? It would benefit every eye practice financially to offer this service and benefit the families who currently have to travel quite far to reach a practitioner. In addition, since around 50% of all children with learning difficulties have Irlen Syndrome it only makes sense to add it’s study to the course work for all Special Education teachers. Since Irlen syndrome is barely touched upon in optical school in the United States, and rarely mentioned in teacher education, many children are misdiagnosed.  My oldest daughter was diagnosed dyslexic with visual processing and processing speed disorders and we didn’t discover she had Irlen syndrome for 8 more years.

This is a tragedy because Irlen Syndrome is easily treated with colored filters.  When left untreated it causes other health conditions such as Adrenal Fatigue and Tachycardia (too fast heartbeat.)  Studies have shown for every beat per minute you can lower your resting heart rate, you extend your life by 1 year. Take a look at the typical brain activity of an Irlen patient with and without filters.

Untreated Irlen patients are stressed out all the time!  It’s common to find them grinding their teeth, clenching their jaws (with permanent joint damage), tight shoulders and neck muscles, headaches–often migranes.  This amount of stress can lead to OCD behaviors, whole body inflammation, hyperactivity, memory loss and language processing disorders (poor access to words when writing or talking,) new or worsening allergies, temper eruptions, sensory integrative disorder (sensitivity to touch, sounds, smells, tastes and textures visual clutter, etc.), depression, and social anxiety (fear of crowds or leaving home.)

I had common adrenal fatigue symptoms at an early age such as exercise intolerance, heat and cold sensitivity, low blood pressure, low blood sugar, depression, exhaustion, amenorrhea (after age 13), food sensitivities and fear of crowds. When I became a mother these symptoms increased to the point that I was bedfast for months at a time on several occasions.

I never would have considered Irlen syndrome as the root cause of my trouble, if it weren’t for my daughters.  I never struggled in school.  I learned to read spontaneously when I was 4 and went through school in the gifted and talented program, earning straight As and a full ride scholarship through college.  9% of Irlen patients are just like me.  Their visual disturbances don’t disrupt normal function.  When I was sitting in the clinic with Heather watching her 3 hour long test process, I would say things like—ooh, that color makes the whole room feel calm.  The doctor looked at me and said, “Mama, you’re next.”

“Oh no!  Not me! I read just fine.”

“I’m sure you do. You’ll get a chance to prove it in a minute.”

I sat at the testing desk and the doctor asked me a few questions:  Do you have TMJ? Are you considered clumsy?  Do you ever have trouble thinking of the right word? Do sounds, smells, and lights irritate you?  Have you struggled with Adrenal Fatigue?  Do you have night blindness? Do you grind your teeth?  Have you ever worn glasses?

I answered yes to everything.  Then I remembered when I was 12, school and social pressures and hormone changes added to the stress that my brain had already been under for years.  The visual disturbances worsened until I was blending lines together in reading, skipping and re-reading lines.  Homework was impossible.  My mom took me to the eye doctor. He said, “Well, there’s nothing wrong with her eyes, but I’m going to write her this little prescription and see if we can relax her eye muscles a little.”  That should have been my first clue that I had a neurological problem, but we just didn’t know.

The doctor gave me a medical textbook to read.  It took all my concentration to focus on the words and pronounce the complex vocabulary properly.  But I did it, really well. I beamed at her….”I proved it.”

Then she said, “What was that about?”  I couldn’t remember much from the text I read.   She turned the page and we spent several minutes looking at the page through different colored filters.  I found 2 that cut down on trembling of the text and she asked me to read again.  My speed and accuracy was pronouncedly improved and I could remember more of the text. she asked me to go home and make an appointment with the local screener. I said I’d consider it.

In the meantime, my youngest daughter’s glasses arrived in the mail.  She was at school so I tried them on.  I didn’t expect much, but a strong feeling of peace and well-being flooded over me.  I was experiencing a calm brain for the first time in my life and it was overwhelming.  I burst into tears.  I looked across the room and things far away were in focus that weren’t before. When I took the glasses off and put them back on, and off and on…. (you would too!)  I realized the room had been vibrating…my whole life.

A few days later, my oldest daughter was in the living room doing her homework in the dark…again.  “Don’t you want me to turn on some more light?”  I asked.

“No! Please, No!”  Then she burst into tears.  “Could you read my text book to me?  I’ve been staring at it forever and I can’t make sense of it.”  In the past I would have said something like, “If you’d work in adequate light, you’d be able to read it.”  But this time, I put everything together.  The headaches.  The dyslexic and processing diagnosis.  The emotional outbursts and sensitivity to sound and light.  I read her the book, then called Ken Schmidt our local Irlen screener and got her in the next day.  My suspicions were confirmed. She had a severe case of Irlens.

Heidi’s case is interesting because her verbal communication is partially locked due to Irlens.  She learned to talk late even though everything else was developmentally early.  I’ve always known to take what she says with a grain of salt.  It’s not that she’s untruthful, she just perceives things unusually. Heidi was unable to verbalize which filters helped her.  Her Irlens was so severe that she still saw visual disturbances through every combination of filters.

At our extended visit to the specialist 3 hours away, I mentioned to the doctor that I wished we could hook Heidi up to a biofeedback machine so we could test the stress on her brain through the different filters. That would help us figure out what she needed since she couldn’t tell us.  The doctor snapped her fingers.  “I can’t do that, but I can do this….”  She went to a drawer and pulled out an ear lobe pulse monitor.

She hooked it up to Heidi’s ear and measured her pulse at 84 beats per minute.  That’s pretty fast for an athletic teenage girl who has been sitting in a chair for 2 hours. Heidi held different combinations of filters up to her eyes and the doctor kept watch on the pulse monitor.  When we found the combination of filters we ordered for her, her heart rate came down to 50 beats per minute in a matter of seconds.  Heidi still had visual disturbances through those filters, but it was the best we could do.  She will wear them for a few months and then we will go back and try again, hoping that her brain will have calmed enough so she can help guide us to the correct filters better.

The doctor looked at me and said, “Mom, you need to consider this more deeply. No family has 2 daughters this severely affected without history of traumatic injury unless both parents are genetic carriers.”

Both Parents? I made an appointment for myself with the local screener.  Ken showed me several sheets of paper designed to trigger visual disturbances in an Irlen patient.  He asked me what I could see.  I would say, “This is what I see, but I know this to be true about what I’m seeing.”  He said, “I’m not testing your ability to adapt for yourself.  No one is disputing that you do that very well.  I just want to know what you see.”  Then it occurred to me that I had spent my whole life adapting, working hard to perceive, ignoring what my mind was telling me and looking for context clues to find the truth.  I saw blue and yellow auras and rivers of white running through the print. When I was counting a row of black Xs, the white swallowed them up and left me with a row of white dots.  A picture of a black box appeared to have a gray side and the lines would disappear and reappear at random intervals, sometimes doubling.  I told him everything, and said, “But doesn’t everyone see it the way I’m seeing it? Aren’t these optical illusions?”  I looked at his face and saw the answer clearly, “No.”

Trying on frames at Costco

So off I went to the specialist.  I’ll spare you the details, but when I finally found the filters I ordered, she had me hold them up to my face and walk outside.  I looked out over the horizon and everything was clear as far as I could see. Crisp, fresh.  The lenses had no curve to them, only color. How could this be?  The pavement seemed farther away than it used to be.  I walked cautiously, slowly.  Lifting my feet too high at times, and leaning on Darren’s arm for balance.  My depth perception had been this wrong?  I am going to need to learn to walk all over again.  No wonder I trip up the stairs, crash into door-frames, and knock my hips on furniture.

I have two more children that need to be tested. Their little quirks and sensitivities finally make sense in the big picture of what we’re learning. I want to run out and help them right away, but every person that gets treated costs around $1100, and I need some time to save.

Here are the steps for treatment.  Insurance won’t cover it, but most HSA plans will allow you to use pre-tax funds from your HSA account or cafeteria plan.

  1.  Take the self-test
  2. Make an appointment with a screener.  This costs $80 in my town, but saves $150 off the  Diagnostician appointment.  This is usually a 2 hour session and concludes with a set of colored overlays to read with if you are diagnosed with Irlen Syndrome. Colored overlays are helpful but are just a bandaid.  Irlens affects more than just reading and only glasses or contacts worn constantly are a real solution.
  3. Make sure to have a current eye exam.  And carry a copy of your prescription.
  4. Buy frames that are large enough to block light from reaching your eyes from the top.  Just frames, don’t fill the prescription. You shouldn’t be able to see much ceiling if you roll your eyes up with the your frames on. (We found Costco to be the best combo of style, quality and price.)
  5. Make an appointment with an Irlen Diagnostician.  Do call around.  We have 3 diagnosticians all within 3 hours of our home.  I didn’t check other states and went to one based on a friend’s recommendation.  She charges $930 for an appointment, the other one that I found out about later charges $450.  This is significant because we have so many family members affected, but now we have a history and relationship with the expensive doctor.  (The diagnostician will have advice on whether your prescription is necessary or whether the filters will be enough correction.  Ultimately it’s up to you whether you do both or not.)
  6. Follow up in 2-3 months.  If at any time the lenses don’t appear to be working, go back and have them checked.  Our doctor doesn’t charge for a check within 3 months of the last one.  If the child stops wearing them all the time, complains of headaches, or has increased emotional outbursts, it’s time to get them checked.
  7. Once you have a good set of lenses, go back annually for a follow up.  The color can fade over time and may need to be retinted.  Contacts can also be tinted, but only certain kinds.  Once your prescription is good, ask your diagnostician about your contact options.

If you made it this far and have questions or comments, I’m all ears :).

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18 thoughts on “Our Adventure with Irlen Syndrome

  1. Anonymous says:

    I have Irlen glasses too!

    I have a friend who works with juvenile delinquents that are flunking out of school. Most of them are like new people after getting Irlen glasses!

  2. Anna says:

    Wow Angela I have never heard of this and I think I finally found a way to help my husband who is a combat veteran although he has had a problem with bright light all his life. I have always thought he was dyslexic and written off his sensitivity to bright light to his beautiful blue green eyes since mine are brown now small pieces are falling into place. There is no way to correct this except wearing corrective lenses for the rest of your life? I am wondering if neuraldevelopmental therapy could correct this somewhat. I am so happy you found answers for your daughter I have been praying for your family and for her. I am hoping that we have a practitioner in our state.

    • Angela says:

      Anna, I don’t know if there is a more permanent solution to wearing glasses/contacts. There needs to be a lot more research done in this area. The discovery is about 30 years old, but has been poorly funded. Biofeedback therapy can be helpful, but that just helps a person consciously sense their stress level and learn to control it, so I’m not sure if that can fix visual distortions too. Thank you for your prayers!

  3. Niki says:

    Wow Angela! What a story. Thank you for being so candid and sharing. I had never heard of this before, but I have a nephew who has struggled with dyslexia for years, so I’m passing your information onto his parents. Thank you!

    • Angela says:

      Niki, this makes me so happy! If his struggles could be fixed with a pair of special glasses, it’s life changing. I’m reading her book, The Irlen Solution, and it gives other ideas for people for whom the filters don’t work. It’s available at the library :).

  4. Emmaline E says:

    I’m a tutor and work with lots of students who are challenged in reading. I’d never heard of this, and am excited to learn more! This has the potential to be a game-changer for some of my kids and their families… Thank you for raising awareness!

  5. Meredith Canaan says:

    This is a great article. I was diagnosed with something called Visual Discomfort Syndrome in the 1990s when I was in college. They gave me overlays to help me read my text books. It looks like this might be the same thing as Irlens. I have always had extremely tight shoulders, I get head aches, have had adrenal fatigue off and on for years. I will be looking into this much further now, as it may be that my daughter has it as well.

    • Angela says:

      Yes, Meredith. This sounds like the early years of Irlen syndrome. It used to be called Scoptic Sensitivity too. I hope both of you are able find the solution you need.

  6. JC says:

    Hi Angela. I don’t even know what to say. I was loking up some Irlen Syndrome stories online and your family’s story really caught my attention because I completely relate to it. I’m an 18 years old student from Portugal. I’ve been having weird visual symptoms which have made my life quite hard for about 9 years now. I know I’m not dumb, I got a full ride to an Ivy league school which I’ll be attending this September. But I never really read for pleasure and I’ve always preferred taking care of my learning through videos or lectures rather than reading.

    I was also diagnosed with Adrenal Fatigue a few years ago, my heart beat has also been way too fast ever since I started having visual symptoms (went from about 50bpm to 80bpm resting heart rate), I’m also always constantly stressed and tired, I’ve been battling on and off with depression and OCD for many years, I’ve had recurring migraines for years, and my neck is always extremely sore from how tight my muscles are. It even pops and cracks whenever I move it too fast, just like if I was an old man (and I should be in my prime years!)

    I was lucky enough to read about Irlen Syndrome online a few months ago. I went to a screener ASAP and my suspicions were confirmed. She said I am quite a severe case. I’m currently waiting to go meet a diagnostician in London since there are none in Portugal, I can’t wait to get my glasses and finally address the root of all my health problems (hopefully).

    I don’t know why there’s so much controversy around this condition, I’ve been conscious of my symptoms since they started (unlike those born with Irlens), but the lack of awareness about this condition, especially outside of the UK/US, has made me question my sanity many times. Doctors I went to told me that there was nothing wrong with me and that it was all in my head. I wonder how different my high school days would have been if I had gotten immediate attention and treatment.

    Oh well, no point in ruminating about what could’ve. I hope I can use my future education to help others suffering from Irlens as well, and I just want to let you know that your post was very inspiring and comforting. It really does make me feel better knowing I’m not alone in this struggle with Irlens.

    All the best to you and your family, and if you have more things to share about Irlens on your website I’d love to read them (I guess I can read a bit for pleasure after all).

    • Angela says:

      I’m so glad you found my blog and took the time to leave a comment. You are such a well spoken young man and I’m excited to have you on the horizon to give more hope and resources to the next generation. I haven’t written more here, since it’s a bit outside the normal topic of this blog. I did write a piece on my other blog, which you can find here: http://www.centsablyfit.com/when-adrenal-fatigue-isnt-gut-related/
      and will have some guest posts coming out other places soon. Including one called “How my Daughter’s Learning Disability Saved My Life.”

      If I were in a different position with my family, I would become an educational neurologist and use brain scans and cognitive therapy to study and remediate learning disabilities. Maybe you can do that for me :). I do wish the world was better educated on the topic. My daughter (17) was just denied all accommodations on her ACT exam,including access to her glasses, overlays, and light blocking visor. The board claimed it would giver her an unfair advantage over her peers. I was livid, but my hands were tied. She was visibly upset when she entered the testing area and when questioned by the one giving the exam she explained she was denied the use of her glasses. The proctor looked at her and said, “What glasses? I don’t see any glasses.” That was a kindness that we appreciate in an obviously unfair situation. Unfortunately, her case is so unusual, that glasses alone aren’t enough and she uses them in combination with her overlays. It is difficult for her to select the appropriate bubble to fill in, even when she knows the correct answer, when she must chase them around the page. That decision will affect her ability to get scholarship money, and therefore the rest of her life, but she is bright and driven and will find another way.

      I too wonder how our lives would be different if we discovered this years ago. The important thing is, it is different now :). I’ll be looking for your name in headlines.

  7. Anonymous says:

    Thank you for sharing your story. It is so much like ours. I also didn’t realize I had Irlen Syndrome until after my children were diagnosed. I feel for your daughter with 8 years of misdiagnosis! We’re trying to raise awareness in our community so others get identified sooner. There is so much research and evidence now with brain imaging – I hope Irlen screening will become standard in U.S. schools, especially with so much positive school research like in Mississippi currently. https://www.irlensyndrome.org/school-children/

    • Angela says:

      Thank you so much for what you are doing to help raise awareness. It breaks my heart how easy this is to treat and how many kids will suffer for life without help. The scary part is how going untreated can affect the rest of the body and lead to chronic disease. I hope it will become standard screening too.

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