Light sensitive?

[Adlon57]

I have juvenile myclonic epilepsy and have always wondered whether I am photo sensitive to the likes of a worktop or even a TV after sessions of watching the screens of these devices? I usually find I am most sensitive within 2 hours of waking up that I would have seizures, and that being the time I would have 'mini' auras, almost as a warning to be careful! especially using the computer just after sleep? Would some sort of photo sensitive shaded glasses be an realistic alternative?

[EpilepsyAction1 Partner Epilepsy Action]

Hi Adlon57

Photosensitive epilepsy is a type of epilepsy, in which all, or almost all, seizures are triggered by flashing or flickering light. Both natural and artificial light may trigger seizures. Some patterns, like stripes or checks, can also trigger seizures for some people with photosensitive epilepsy.

If you have an epileptic seizure when looking at flashing or flickering lights or certain patterns, this is a sign that you may have photosensitive epilepsy.

Your doctor may ask you to have an electroencephalogram (EEG) test. This test records the electrical signals from your brain on an EEG machine. During the test, you will be asked to look at some flashing lights. If doing this changes the electrical signals in your brain, it may indicate that you have photosensitive epilepsy.

The person doing the test will usually try to stop the test before you actually have a seizure. However, there is a small risk that you will have a seizure when the test is done.

There are no glasses that can stop photosensitive seizures from happening. Here are some other ways to reduce the risk of seizures if someone has photosensitive epilepsy

•Avoid looking at anything that you know may trigger a seizure.

•Avoid things that can increase your risk of having a seizure. These can include feeling tired or stressed, not having enough sleep and drinking alcohol.

•If you take epilepsy medicine, always take it as prescribed by your doctor.

•If you look at something that might trigger a seizure, don’t close your eyes. This could increase your risk of having a seizure. Instead, immediately cover one eye with the palm of your hand and turn away from the trigger. This reduces the number of brain cells that are stimulated and reduces the risk of a seizure happening.

Regards

Diane

Epilepsy Action Helpline Team

[Adlon57 in reply to EpilepsyAction1]

Some helpful ideas there, I think my epilepsy can be set off by long exposure to the computer screen, due to being so close to the screen, if this is a early session on the computer, say within two hours of waking up, I have sorts of small auras that remind me to cease on my computer! I have bad eyesight so am near the screen all the time, so I use my spare glasses for the viewing, but as you suggest I think a break might help.

Pity about no glasses to stop photosensitive seizures, there would be a big demand if there were some?

To tell you the truth I have had epilepsy for over 45 years so am aware of a lot of those suggestions. Usually it is stress and lack of sleep that set me off, but as I mentioned the computer screen can cause myself a seizure [I am a retired genealogical/historical researcher, and use the computer a lot!]]

[AmyBadd]

Hi. I have JME as well, and I have been told that it is unusual for seizures to be triggered by photosensitivity in this syndrome. The usual trigger is lack of sleep and most people have seizures within a couple of hours of waking up. Do you think it could just be that this is the case with you and it is just a coincidence you are often using the computer (if this is something you do a lot anyway?).

You could talk to your neurologist about it. They might have some suggestions.

Good luck

Amy

[Adlon57 in reply to AmyBadd]

Good point, as you say it usually is lack of sleep, [or change of medication which is an important one as well]. I am fully retired now so I do get a lot more sleep, [I'm a lazy slob!], and have had 4 seizures since then in 2013, and usually the first thing I do is to concentrate and look up my emails. Right enough, I concentrate on them, my brain is still adjusting, the brain would complain and then a seizure? If I change my routine and look at my emails later on, I might cease to have these 'mini auras', small warnings of a seizure, which could happen if I carried on 'concentrating', could be?

It was brilliant last year was the first year I did not have a seizure since I first contracted epilepsy 47 years ago!!

I could ask my new neurologist about it !

all the best

Shaun

[AmyBadd]

Congratulations, it sounds like you are doing really well! It's great that you also get some warning of your seizures. I also sometimes get funny feelings, which might be similar to what you are talking about. I usually stop what I am doing and lie down and close my eyes or just do something that doesn't take much concentration. I think doing this helps the brain slow down a bit and might prevent a seizure. I usually feel better after half an hour or so.

[Adlon57]

Exactly the same routine! I've had two seizures this year but that was due to sorting out new medication. Yes too much concentration early in the morning not a good idea, I'm now retired, Stay Cool!