Scotopic Sensitivity Syndrome

[MrsSnaplegs]

I am posting here because after a search of old posts this sub forum seems to have the most posters knowledgable on this subject. I hope you can advise

I have (today) been formaly identified as having SSS (Irlen/Myers) by a specialist optometrist. I am waiting for my new tinted glasses. I am 38 A long story to how I was identified but suffice to say optometrist said it will improve my reading rate by 40% based on the words per minute test she did.

I have no issues with this "diagnosis" however have a few questions?

Will I have had this all my life and just compensated/coped?
I have CFS and suspect this has been one of the factors in some of my symptoms, I know this is not a cure but may make things easier. For those that have this as adults - how much of a difference did you notice in your mental fatigue?
My DD is 5 and learning to read, she has started to talk about the words being fizzy - this to me is a big warning now - does anyone know if SSS is genetic?

Thanks for any help you can give

Bump

Bumpity bump

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Can't help but maybe try special needs, rather than educational needs?

Sorry posted here as it's classed (afaik) as SEN and when I searched old posts this was where others had posted

DS1 has blue glasses, he's had them for about three months. He's 10 btw. He says that he is much less tired and headachey than before he got them, and we are needing much less face and head massage, which he always asked for when his eyes and head were over-stressed visually. I gather that they are very similar to Irlen lenses, his were done by colorimetry testing as he's severly dyslexic and I was able to refine quite clearly (without him realising) what colours he was good with and which ones not. It was no surprise to me when he came out of the testing with a dark shade of turquoise. He has improved enormously since getting the glasses, his reading has improved in enormous leaps (and measurably so) and he is now able to read maps. Massive difference all round. I was a bit of a sceptic before the glasses, but I'm really impressed.

btw, have heard of family links, don't know if it's actually a genetic link which has been proven as such, or big coincidence and perhaps a higher correlation? Dyslexia has a genetic link, and perhaps more testing / correlating of studies needs to be done. Ask your optometrist / optician? Well worth testing, even if it's just trying out overlays and so on for now (assuming that you know that an overlay needs to be the "opposite" colour from the lenses, EG ds1 uses red ruler as an overlay, but blue glasses. One at a time, obv!)

Mrs Shrek
Thank you for your reply
I saw an educationalist first who pre screened me first then saw a specialist optician - had to be pre screened as employer funding test and lenses
I will wait until I have my lenses and then try and get an appt for dd - are eye tests free for children? I guess the colorimitry bit isn't - any idea of costs? Not that it should make a difference but need to know if I should be saving up for this, should I ask at school about it

Brilliant that your employers are paying!!

re. your dd, imho I'd try the ruler or something first, and suss out whether there seems to be a genuine improvement. They honestly won't diagnose dyslexia etc until 7, and it is often really difficult to see whether there's a problem. I'm a SEN/ASD specialist teacher and so I knew what I was looking for, recognised what was going on very early, like when he failed all his eye tests at 3, and the repeat ones for that matter, knew he had other issues, but was stuck until the Ed Psych assessment the week after his 7th birthday. He'd asked me when very young "why do those letters wave, are they on flags" when looking at the signs above shops - esp yellow ones and black on yellow or white. This was the point at which the proverbial penny dropped for me...he was only about 4 at the time.

Like you, ds1 improved his reading speed by approx 50% with the glasses, pretty much instantly. NHS eye tests are free for children, but yes you guessed it they charge for the intuitive colorimetry etc, ds1's was £20ish. We got a bit of money off his glasses, as he needs a very slight correction for long sight (which he wouldn't have had glasses for otherwise iyswim) but that entitled him to the NHS voucher - iirc worth about £45(?) it left about £100 to pay. Don't jump into anything, the fact that you know about it and know the signs to look for, will flag it up before it gets to be a problem if indeed she has the same difficulty as you. Maybe start with a regular eye test and see what the next 18 months brings?