strobe lights/crazy lights.. wut happens to YOU?

[Porchlight]

Endless, Chel, Huskymom and all - Thank you for your posts!

My one year old has seizures - complex partial - which we first noticed whenever he sat beneath the ceiling fan/light and looked up. It really helps me as his mom to hear about the photosensitivity/seizure experience from someone who can talk about it, describe it. Thank you!

Halloween is a big deal on our block, and we would like to take him trick or treating, but I'm worried that the strobes, or maybe even the colored LED lights could be problematic for him, since hes shown photosensitivity.
Can any of you with photosensitivity advise me?

 

[Chel]

Hi Porchlight,

At one year old, there are possibly daytime activities your child can participate in and enjoy, without the risk of exposing him to flashing lights.

I'm tucked inside with the lights out on Halloween LOL If I have to drive through an area where people are displaying flashing Christmas lights next month and December, I'll be wearing sunglasses (at night). I'll also shut one eye, as this reduces the signal to the brain (I do this when driving through heavy tree shadows, too).

I hope this helps.
Cheers
Chel

 

[C0urt]

i can ignore most strobe, they make me unhappy, give me headaches and such, but i can stand them

 

[SlimBlue]

I used to love strobes and lasers at raves, and would dance for 10 hours staring directly at them (after diagnosis) and they never caused a seizure.

The only reason they're not part of my life anymore is coz I'm an old fuddy-duddy lol

Old CRT monitors showing white pages on full contrast settings, and random sunlight dappling through tree branches/off water however- even though I'm not usually photosensitive, can be a trigger..

 

[girlwithadog]

Hopefully I will be breathing much easier soon.
I called my neurologist after another breakdown yesterday so they fit me in this morning. He wants me to cut the keppra in half down to 500 2x and the topamax he wants to double. He is aware of my seizure increase as well. We kept our appointment for the fourth and I will be getting an MRI squeezed in some time before that point.

Since starting the topamax I have noticed a few good things, such as my night eating and sleepwalking have improved as well as my over eating (since I just quit smoking) has improved but I feel like an old person, I feel scrambled. I forget everything. I have trouble focusing and remembering, paying attention. Like, its bad. Does this get better?

 

[George__]

As long as I "keep going", it's not a problem. But the typical being very tired afterwards is a trigger

 

[Sweet Pea]

I have an odd relationship with light.

I have never had any episode during an EEG, including the strobe lights (which is why I am in diagnosis limbo). I'm surprised I don't have a reaction to the strobe effect during the EEG, but then again I'm not surprised. tend to have some kind of Simple Partial going to Walmart, but that is after walking around for a half hour. The strobe light effect during an EEG is less that 10 minutes all together.

I also can be on the computer, or at a concert or party for several hours before I have any affect. I have caught several Simple and Complex Partials on my webcam after doing web design 3 hours straight. I will have initial disoriented feelings and tingling sensations even in the beginning, but don't have any real noticeable/alarming until several hours.

I also have issues with lights between trees, during car trips and only during certain times of the day I get woozy, and tingly, and get a general sickness feeling. I'm fine in the mornings and at night, and I love road trips. Its just when the sun is in in the particular spot along with the flashing...

Does anyone else have problems with PATTERNS? And not just with light, but if you look at a very dense pattern (like a bunch of circles, or zigzags, or black and white lines, etc.) on say PAPER - do you feel disoriented, dizzy, or get numb/tingles, or salivate? I have this issue - wondering if it is common, and possibly tied to photosensitivity in the brain or eyes?

 

[skyfire322]

It's weird for me. During EEG's, I don't react to strobes that badly. However, if I'm at a concert, I just want to curl up in the fetal position. Maybe it's the mix of music and lights that gets to me.

 

[SlimBlue]

Does anyone else have problems with PATTERNS? And not just with light

Slightly, and they are well known triggers- especially moving, random ones. They do sort of cause an odd feeling- but I've never known one to trigger me, but then as I said- I'm not really photosensitive.

Are you aware of the 'Hollow face illusion'? On various ones (not all) at the cross-over point I get a slightly odd sensation, but it's never been a trigger to me.

** WARNING- THIS MAYBE A TRIGGER FOR YOU **

 

[Chel]

Does anyone else have problems with PATTERNS?

All of those pattern types you described: Swirling, strong contrasting colours, geometrics, even small flowers on a plain background. If it's busy, my brain can't cope. Partly, this is due to a strabismus in my left eye, which makes everything swirl (or appear to swirl) as my brain figures out which eye is correct. So I just look away. "Doesn't this look pretty?" "Ah, no." Move on.

 

[C0urt]

i go unce unce unce,


actually it is nice to know i am not the only person who wakes up naked strange places,
that can be a bit unsettling to have it happen more than once.

 

[illuminatedsquid]

Color explosions , bursts and patterns dots dots dots,stripes in all kinds of ways zips and clouds the good stuff size varion.
Kinda hard to explain to a dr without sounding completely nutters , and photophobia mite be problematicly �� when it comes to testing.
I had no idea the patterns and shapes you could see but it makes since ,it makes be I don't know feel better about it

 

[Belinda5000]

strobe lights can send me into tonic-clonic or simple partial seizures.

I just get a feeling in my head that something is going to happen sometime but not always.

 

[SlimBlue]

 

[jenagade]

I usually get a feeling of falling and start to sweat. I even have that with camera flashes and the new "blue" headlights!

Oh the LED headlights are the worst. I have seen cyclists who have strobing LED lights and it is horrific, if I was still driving it would be pretty dangerous.

I don't think I'm photosensitive but I definitely have effects from strobes or flashing lights in general. Sound is definitely a trigger for me so movies can be a bit dicey, especially action movies lol.

The feeling I get from lights is like electricity running from my heart up my spine and spreads out to a kind of pulsing electrical static.