Irlen Syndrome
By Julie Barker
Hi everyone, it’s Julie here! You all know me as the Chairperson of Fibro Active and I’m hoping that you have got to know me well in my role. I write a lot about good practice but not about how my illness affects me. I have Fibromyalgia, Chronic Fatigue Syndrome, Lymphedema and Irlen Syndrome, IBS, Fibro Fog etc etc etc. What I’d like to do is talk to you about Irlen Syndrome. I had never heard of Irlen Syndrome until I was discussing light sensitivity on our group page.
Setting CFS Goals
To set the scene, In, 2016 I was attending the CFS clinic at Derby Royal on a monthly basis, my goals were to relieve the pressure in my head and to walk again as I was dependant on a mobility scooter. I had also started Tai Chi for Health lessons in the September. Most of you have already read about the benefits of Tai Chi and how we have incorporated it into the group programme. However, I haven’t really made a big thing about Irlen even though it has played a huge role in improving my symptoms especially the cognitive dysfunction.
Taking the opportunity
I first became aware of Irlen Syndrome through a post I had put on our Facebook group page about light sensitivity later in the summer of 2016. Alan Penn, the UK Irlen specialist had also joined the group page. He was there for personal reasons. However, the opportunity arose, and he put a link through to his website and invited us to take a free self-assessment.
I ticked nearly all the boxes apart from about 3. So, I emailed it to Alan, who got in touch with me very quickly! Coincidently, we only live about a mile away from each other, so he popped round to find me very frustrated and ready to throw my laptop out the window! Here’s me with a degree struggling to use my laptop and my functionality at 0.1%. I felt so ill.
My Symptoms
I was almost living in the dark, my eyes were sore and dry at night. I had been dependant on sunglasses all year round for about 20 years. My eyes would stream outside, I could never look up. I had constant pressure in my head. If I looked at people long enough against a wall/ background I could see an aura around them and felt nauseous. Florescent lights had given me migraines since I was a child. Driving wasn’t pleasant, especially at night, the car headlights hurt my eyes and they merged so I couldn’t tell what side of the road they were on. Certain patterns on carpets and clothes danced and made me feel nauseous.
At the age of twelve I remember looking at squared paper in a shop window and immediately developing what I thought was a migraine and from about the same time I had trouble reading. I would repeat the same sentence in my head. I would dread reading aloud in class because my speech would be fragmented. Even to this day, I can only read a book slowly. I can tell you that I’ve read a good book, but I am not able to recall the details. Throughout my degree I had to present power-point presentations which I found difficult but managed with a few prompts. Sadly, today I am unable to present without a full set of notes that I am glued to, to prevent going blank or digressing.
I can’t see white writing on black background. It’s just a squidgy mess. Trying to read Freeview on the TV really hurts my eyes.
My vision was distorted with lots of little what I thought were molecules. Remember when you learned about solid mass, liquid, and gas and how the molecules moved around. Well I honestly thought I had super-human vision as they were there all the time for years.
My Brain Was Fried
So, Alan assessed me and with a briefcase full of lenses that looked like a paint colour chart. He was able to prescribe my unique colour combination for lenses which just happened to be dominated by my favourite colour. He also pointed out that purple relaxed me, and I found it calming. That is why everything I have is purple. He said that my case was severe and although he couldn’t cure me, the lenses would eventually stabilise my condition. At this stage I think the term used was ‘my brain was fried’!
My Irlen Diary
The lenses were sent off to be impregnated with my unique colour combination at Irlen HQ in America. I was so desperate for these lenses, time almost stood still. The lenses finally arrived. I kept a diary to trace any improvements.
Day 1: I received my glasses in the evening. Immediate changes: I can read white writing on black background, reduced tension and business in the forehead, reduced pressure in the forehead, face relaxed, read more fluently.
Day 2: Reduced pressure in the forehead, very little fatigue even though the cloud cover was horrendous, I could function! I was in a meeting with two others who also have Fibro and CFS. Both walked out with onset migraines due to poor lighting. I had no effects!
Day 3: I was able to type up a spread sheet and clearly followed it without using colours. Still typing with the wrong keys. No issues in daylight. No runny eyes, no soreness, no stress around the eyes. Still fragmented speech but more fluent reading.
Day 4&5: Struggled with the weather front and rain. Headache later at night and vision became blurred. I needed brighter lights in the living room and laptop. I was in a fibro flare but didn't have fatigue and I could still function!
Day 6: Was able to sit in a poorly lit office and function. Drove home in the dark and was able to cope with the lights. It felt like a shield had been put in front of my eyes protecting me from the pain!
Day 7: I could function under poor lighting. My mood has lifted too. People are starting to say that I look different.
Day 8: I drove to hospital and then to a meeting in Derby. I was not fatigued. I had no issues with lighting. It was brilliant sunlight, and everything seemed so sharp and vibrant. It was a joy to drive. My mood was also lifted again, and I was starting to be humorous!!!!
Day 9: Went shopping at the Range with a friend. Normally I would be overwhelmed and wanting to escape asap. We were in there 3 hrs!!!!
Day 10: Went out in Derby in the evening. I drove through the traffic that was a nightmare due to the police incident. Just coped with the lights. Far too many headlights and Christmas lights. People saying, I look different again! My face is relaxed. Coped in a bar afterwards but the environmental noises were a bit too much. Coped with driving through thick fog on the way home.
Day 11: Woke up feeling like I had a hangover even though I didn't drink. Although I had a bad headache there was no busyness and pressure. It made the headache more identifiable and pronounced.
Day 12: Today I’ve typed this with hardly any mistakes and able to type words with the letters the right way round)))
This is so amazing! It is the best Christmas Present ever! Thank you)))
The Irlen has stabilised
I was a bit premature with the white writing because it hasn’t improved sadly, but you have seen what I am capable of now. I have just had my third set of lenses and Alan is happy that my brain has stabilised, I just need the odd tweak.
I still have the daily battle to maintain the list of chronic illnesses, but I would not be able to achieve what I am doing without the Irlen Lenses. If I am in a flare, I have to decide which symptoms belong to which condition as they all overlap.
Hitting the Targets
I hit both my goals at the CFS clinic. The pressure in my head has gone and I started walking again. When the nurse at the CFS clinic told me what my goals were, I couldn’t remember setting them.
It’s not just Dyslexia
One thing I have learned from wearing the lenses, is that Irlen affects your whole being. It’s not just the dyslexia and being able to read. The lenses must be worn from morning until bedtime to get the benefits. It’s about reducing the stress on your brain to enable you to function. From what I understand of it, is that people with Irlen don’t process the full spectrum thus creating a problem when trying to process black and white.
It does run in families, so it is worth your family taking the free online test to eliminate a potentially hidden condition. My life would have been so different if I had been tested earlier. For the UK visit: www.alanpenn.co.uk or for America visit www.irlen.com.