Light sensitivity HELP please.: I've got PCS, many... - Headway

Headway
7,651 members10,131 posts

Light sensitivity HELP please.

pinkvision
pinkvision

I've got PCS, many symptoms have improved or are manageable however the light sensitivity part is as bad as ever. I've been prescribed tinted lenses which work in overcast conditions, they don't work in sunshine or modern lighting eg LED. I have had another test to try and solve this but shows there is no change to the tint. I've challenged the tests because they only test using one type of light.

The effects I get from exposure to 'bad' light are glare, pattern distortion, vision field full of white moving dots, and total white out. During this my other symptoms return or get worse, ie memory, concentration, confusion, increased heart rate, stomach problems, stress and anxiety.

I'm trying to find a professional who deals specifically with vision problems arising from damage to the visual cortex.

If anyone finds this a familiar experience and has managed to solve or improve their condition I would be grateful for any information.

24 Replies
oldestnewest

I am always wearing sunglasses since bleed it seems to calm me, plus hide eyes on a bad day, ie bags. When tired I had tinted reading glasses but they were too dark!!

pinkvision
pinkvision in reply to WinB

Thanks

Yes I hate lights, although over years sun light isn’t to bad anymore but west sun glasses a lot.

Tesco’s and any inside lights sets my high anexiety off which isn’t very nice.

No cure really apart from wearing glasses.

Mind you, mine did improve from 0-5 years and now I’m at 10 years.

Good luck

Thanks, sunglasses don't work for me, have specific prescription tint however they test using one type of light and the real world has many types of light, think I have found a lead this morning, have got fingers crossed.

Has having a chromatic coating been discussed. The one that changes with light. I am trying a pair of glasses with prisms and pink tint for reading, but I discussed having the coating for those and for a set of everyday glasses, different prisms.

I may need eye re-training for my visual disturbances, but not sure if this help with bright light.

Thanks this is helpful, I have blue prescription tints and they are brilliant in overcast conditions they don't work in sunlight, fluorescent or LED. I think the issue is how the tests are carried out, they use a system with only one light source and it is not as bright as real every day light. That's why my tints work in overcast conditions and not sunlight etc. I contacted the inventor of the testing apparatus and mentioned this, he said I should just go a bit darker or I may need a tint specific for each light source. So basically I think the testing system is flawed and is not designed for my issues. I am looking to see if there is another system available that takes into account light sources, and the quantitative and qualitative nature of the light. Another thing I've noticed is that although I say my tints are brilliant they, or rather myself, have changed over the 6 months I've been wearing them and now I think I need a retest and maybe an alteration to the tint. Have checked US information and this seems to be a common event after 4-8 months.

Just as an aside there are different categories of darkness for sunglasses. Cat 5 is the darkest, but you are only allowed to drive with up to cat 4. It should be printed on the arm or label next to the CE label. I use cat 4 most of the time and driving glasses at night, but I have scratched mine which really does not help with my visual disturbances and floaters.

Thanks again, sunglasses just don't work for me

Since 1985, I have had 3 brain injuries and heart disease. I wear tinted long distance specs and clear reading specs. As many of us I have been to hospital for a few times since and have very much trouble with the lights. Even the light when the days are overcast give me some trouble. My eyes are always streaming, and I blinking much of the time. I am seeing an opthamolagist at New Cross hospital at Wolverhampton tomorrow hoping that I can get something done to help me. I'm not holding my breath though. Anyway, Good luck and take care. Dave

pinkvision
pinkvision in reply to daveeb

Hi Dave thanks, tinted lenses do work but you have to find the correct ones for each situation. Finding a good optometrist is a key thing here. You can get a list from the RNIB who are very helpful and you can also buy frames at a good price. Hope it works out for you, keep trying don't give up, also due to NHS cuts the private sector may be a better option and not as expensive as you may think. Fingers crossed for you tomorrow

daveeb
daveeb in reply to pinkvision

Good morning pinkvision. I felt a right nut yesterday. After getting to the eye infirmary yesterday, I was told I was in the wrong place. Being pointed to the out patients department, I was taken to the neurologist. The opthamolagist appointment is next month. I'd picked up the wrong paper. DER!!! I'll get it right sooner or later. Dave.

pinkvision
pinkvision in reply to daveeb

Haha, do you find this kind of thing happens alot? I get that too but it has improved dramatically since I started wearing specialist lenses, it still happens though. Well good luck for next month then.

daveeb
daveeb in reply to pinkvision

Phew, not half. When you consider that I used to have very good memory, but since my first BI in 1985, I have short term memory. Prior to then,I could remember any and everything. Now I get confused and forgetful. I've even turned up for an appointment the day before!! The memory loss may be age related (nearly 65) and the other 2 haemorrhages . Dave

pinkvision
pinkvision in reply to daveeb

From my understanding these types of memory loss are different from eachother. Anyway as soon as I had my first tinted lenses I began to improve, after only 2 hours I could cross a road without a second thought whereas before I had to stand back from the curb and keep looking back and fore. I found that my memory and concentration became more cohesive. I started doing puzzles after this to keep improving. It has made such a big difference. There's a book called 'The ghost in my brain' by Clark Elliott. It's a bit of a drag to read but it describes his symptoms etc then importantly how he found tinted lenses and a neural restructuring process. I couldnt get any help and began following this method in an adhoc fashion. I hope you find improvement.

I have a big problem with light sensitivity and bright overhead lights, I wear dark glasses and a widebrimmed dark brown hat, which is better than other less dark hats. I find natural daylight easier. I get a lot of migraines and headaches, and phone computer screens retrigger the migraines, also tv screens. I wish I could find a glasses lense that helped more.

pinkvision
pinkvision in reply to Amber-11

Hi thanks for replying, have you been tested properly? I don't mean at an opticians but at a vision specialist who checks your eyes, optic nerve and visual processing in the brain.

Nackapan
Nackapan in reply to Amber-11

Ditto. I don't watch TV. I am using my phone to type as otherwise isolated. I can't use the telephone.

I've prescription heavily tinted glasses. that help. I also wear a hat with a deep brim. Only wat i can food shop. Sunglasses don't work for me either. Have dad all florescent lights taken out the house. Still can't be in artificial light when tired so I got to bed when dark. At least later now. The artifiavisk lights set my head sizzling and my legs weak and then my skull starts tightening. I'm okay in natunskilled light but not bright sunlight light. I don't drive at night. I also get horrid noises sensitivity. I got an cut out blue light vcover for my mobile I'm using. My head still sizzles but not as bad. I'm told part of migrain I'm left with most of the time post b12 defiency and post concussion syndrome . Definitely the b12 second neurologist said post concussion . My nasty fall was last August.

I've seen a consultation eye specialist who said my eyes are healthy. Did you get the blue tint from an optician? ?

pinkvision
pinkvision in reply to Nackapan

Hi Nackapan, sounds like you are in a visual mess also. What I've found is that my tinted lenses worked really well to begin with, however they are not that good anymore. I am going to get retested soon. I recently got tested for Irlens syndrome, I'm still waiting for the report but the person screening me said I did not have Irlens but some of the coloured overlays had a dramatic effect in improving my reading from a page. It was a strange experience, like the words had a direct line to the brain, I read out loud so fast I was stunned. The downside was I did not see the punctuation, did not understand what the words were and could not remember what I read. Weird.

I am getting assessed by a neuro-psychologist at the brain injury unit at the moment, will be having my third session soon, I got my fingers crossed that some sense will be made from all this. I was very suprised though that they do not factor in the visual processing system. I have been encouraged though to find visual help.

There seem to be different schools of thought as to whether the visual system has an effect to the memory, concentration, auditory systems etc after a head injury.

I think that they don't actually know to be honest. I think they should just say that is the case rather than making up an opinion. Opinion is guessing.

I'm beginning to think that all these different kinds of vision therapy do have a positive effect in certain ways but they are not the full deal. I think the best person to find would be someone who takes all the brain injury issues and visual issues into account and treat you through current knowledge and through trial and error methods.

Check out the video link I posted of a lecture by Dr William Padula. Now he seems to know what he's talking about. He is the type of person to pull this neuro-visual mess into the future, make it main stream and accessible.

Keep fighting, there is a way forward.

Nackapan
Nackapan in reply to pinkvision

Thanks. I did hope all these appointments pay off for you. I asked for a refferal but as I've seen a consultant eye specialist and he said my eyes healthy Gp said don't need one?? I think you right different lenses for different things. Sunglasses don't help at all. I've had 5 different pairs made up on 6 months as prescription kept changing. I now find doing my short walk long vision only glasses better than vari focals? ? I suppose just one prescription. The different tints I will investigate though . I have a very dark one in a pair of varifocals at the moment. I will ask again for a refferal as I'd be si much better if vision easier. Thanks for reply.

pinkvision
pinkvision in reply to Nackapan

Hi Nackapan, an eye consultant is no good for you, most GP's have no idea about head injury symptoms, the people you need are a neuro-psychologist and a behavioural optometrist. You can't get a referral to see a behavioural optometrist, you need to pay for it. Phone the RNIB and ask them for a list, they will direct you to a webpage. Find one close to you and away you go.

Again it could be pot luck, I've heard John Glover in Stockport is good. You will need about £1000 for all the costs, ie test, report, frames and lenses.

You could just go to the USA or Canada for specialist treatment if you can afford it.

Nackapan
Nackapan in reply to pinkvision

Thank you. I haven't been out of a 2 mile zone in 7 months! I will contact RNIB that is within my budget. I've spent so much already on glasses. One private neurologist as wanted mri report read as 18 week nhs wait. And 100 ' s in cab fares when I couldn't drive. Mind you I've saved alot too by not being able to go shopping!. I've never heard of a neuropsychologist...interesting. I wish you well.

My son has the same problems took 3 years to diagnose visual shifting and is in visual rehab and still 4 and a half months to go to finish the year. Its called visual rehab its done by a neuro ophtamalogist. He has been recommended gray eyeglasses

Anyone else having visual rehab for eye shit

You may also like...