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Old 11-30-2007, 02:28 PM   #1
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Angry photo sensitive seizures anyone?

i have had photo sensitive convulsive disorder since i was about 17. i am now 50 and as to this day i run and hide from it and my life is lived in a little box.

this time of year when the sun curves and it is low in the sky my life is limited to 10-4 sometimes even as early as 2:00 ihave to go home!

it ruins my life and makes me so mad! so i avoid trees, buildings, poles and anything else that can and does make a strobe light effect. doesnt help living in colorado either as it is always sunny here versus minneapolis where i am from and it is cloudy alot of the time.

so i was wondering if anyone else lives with this condition? i do not take meds for it. i wear polarized sun glasses and live in a shell..

 
Old 11-30-2007, 05:45 PM   #2
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Re: photo sensitive seizures anyone?

My exgirlfriend has this. She does not do anything like you ( your good). She tries to ignore it and goes on everyday like it doesnt exist. She has mini seizures that seem to make her almost go into a blackout or the most severe I have seen is staring into space, never responding to stimuli. I know its tough now because I have partial epileptic siezure risk since my bike wreck. My only hope(since I still love her but cant deal with her attitude) is that she starts taking care of herself like you. I have been told that some siezures cause permenant brain damage. Find a friend to come over or maybe have someone drive you to a place that does not have the strobe effect anywhere near you. You could go so far as to move in to the desert where not much flashing happens there unless your in a big city and cops are chasing someone. Keep going and good luck.

 
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Old 12-01-2007, 01:39 AM   #3
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Re: photo sensitive seizures anyone?

Jamie,

This is going to sound like a lecture, but I just had to jump in here with a response. You've had epilepsy for so many years. Why are you letting epilepsy continue to run/ruin your life? Can I ask why aren't you taking medication for it? I am photosensitive also, the sun flickering through the trees in the car can -and has thrown me into seizures. I also have other seizures as well, both grand mal and petit mal. They call it by other names nowadays. I have since taken medication and have had my car windows tinted. State law will allow you to tint darker than the average population is allowed to, if you have certain medical conditions. I've been both on and off medication and can tell you from personal experience that the medication, (while I hate taking it) has definitely enabled me to live a more liberating life. I know my seizures are under control and I don't have to worry (as much) about if and when they are going to pop up. And if they do, they do, epilepsy is part of who I am. I do not live in shame. Polarized lenses are a good start. Avoiding strobe lights is another good thing. But please consider seeing a neurologist and getting yourself on medication. You're missing out on LIFE.
Please don't cheat yourself, life is too short.

 
Old 12-04-2007, 07:42 AM   #4
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Re: photo sensitive seizures anyone?

It is very stressful living with this disorder. I can't drive much anymore because of the light reflecting off cars trigger a migraine. Once I see the light I'm pretty much done for & if you drive you can't avoid them. I have a vision problem so wearing dark glasses are out for me. I need a lot of light just not strobe or sun on cars. Seizure meds do not help me for this problem. good luck to you.

 
Old 12-05-2007, 03:42 AM   #5
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Re: photo sensitive seizures anyone?

Sammi,
I have eyeglasses that reduce glare and they have been so helpful in this situation. There is a coating on them that enables them to reduce the glare so you don't get the starburst effect from the headlights of oncoming cars or streetlights. It also helps with reflecting light off of other cars, I had this problem as well. I also leave more distance between cars and found this helps as well. This is how I was able to deal with it. Good luck to the both of you.

Last edited by life_is_good; 12-05-2007 at 03:43 AM.

 
Old 12-05-2007, 07:44 AM   #6
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Re: photo sensitive seizures anyone?

Could I make a comment that may sound rude?

I found that Jamie's generation's parents (my grandparents) were ones that "ignored" that I had seizures. They felt that if you can't see it, it doesn't exist. That could have been part of the issue from the beginning. Not getting a good treatment on a regular basis for the seizures at a younger age.

That may have rubbed off onto you being if you are mostly controlled and not in need of medication you may not felt a need to have a Dr. If you may have seen a Dr at a younger age you could have been placed on medications.

BTW, As for your prior home state (I love it here), we just had a clipper pass through here. Duluth had over a foot of (shutter) Lake Effect snow. 13 county metro was 3-6 just the last 24 hours. Today it's clear skies and glaring in my monitor.

--Travis

 
Old 12-05-2007, 09:59 AM   #7
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Re: photo sensitive seizures anyone?

And for that glaring snow Travis - there's nothing better than Transitional lenses in my glasses. No need for sunglasses, they automatically adjust!

 
Old 12-07-2007, 01:41 PM   #8
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Re: photo sensitive seizures anyone?

Wow - what an interesting post. I have only had one Grand Mal seizure (Thank God) and since then, I had commented to my husband that sunlight shining through trees reallllllly bothered me! Additionally, sunlight shining through an upper decorative window in my living room seemed to 'shoot' me in the face...

Then I read these posts... I'm really wondering... is this a 'medical' thing that there are 'photosensitive seizures' or is this just something people have noticed? The doctors found no medical reason why I had the seizure... I had never even fainted in my life - so it was really odd that it happened to me. I will add that I was driving for about three hours - facing the sun...

I'd love to hear from anyone with info. about this...

 
Old 12-07-2007, 01:43 PM   #9
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Re: photo sensitive seizures anyone?

Read my post that I just posted... I'd love to hear a reply from you about more of this



Quote:
Originally Posted by jamieileana303 View Post
i have had photo sensitive convulsive disorder since i was about 17. i am now 50 and as to this day i run and hide from it and my life is lived in a little box.

this time of year when the sun curves and it is low in the sky my life is limited to 10-4 sometimes even as early as 2:00 ihave to go home!

it ruins my life and makes me so mad! so i avoid trees, buildings, poles and anything else that can and does make a strobe light effect. doesnt help living in colorado either as it is always sunny here versus minneapolis where i am from and it is cloudy alot of the time.

so i was wondering if anyone else lives with this condition? i do not take meds for it. i wear polarized sun glasses and live in a shell..

 
Old 12-07-2007, 05:14 PM   #10
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Re: photo sensitive seizures anyone?

Quote:
Originally Posted by ann77
...I had commented to my husband that sunlight shining through trees reallllllly bothered me! Additionally, sunlight shining through an upper decorative window in my living room seemed to 'shoot' me in the face...

Then I read these posts... I'm really wondering... is this a 'medical' thing that there are 'photosensitive seizures' or is this just something people have noticed? The doctors found no medical reason why I had the seizure... I had never even fainted in my life ...

I'd love to hear from anyone with info. about this...
As for the window issues, if they have "snap in grids", screens, or even the lace trim those can all be attributed to worsen photo related seizures.

Your second question, YES this is a section of epilepsy where peoples seizures are "triggered" by (most often) flashing light or light related. It can be as simple as the apparent movement of objects when looking through the screens on windows. EEG testing can be used to HELP see if a patients seizures are triggered (caused) by light.

Not being one who is sensitive to flashing lights I can't help on the bits and pieces as much.

--Travis

Last edited by Travis from MN; 12-07-2007 at 05:15 PM.

 
Old 12-07-2007, 06:52 PM   #11
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Re: photo sensitive seizures anyone?

I just wanted to add that that sun flickering from behind the trees from the side of a highway triggures seizures for me, as well as traveling under an el (where a train is above the road). The sun flickers through the tracks creating a flashing sensation and sets off seizures. I've learned how to avoid these triggers by changing the time of my routine or adjusting the route.

 
Old 12-17-2007, 12:59 PM   #12
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Smile Re: photo sensitive seizures anyone?

hi
Yes I feel this happening right now and giving me partials from.....
the florescent lights and definatly flashbulbs.
Of all things I stood at an epilepsy conference and told them that????
They kid of acted amazed that it was "O.K." to use a flash in a place like that???
But how does a person get this document????
I feel for you folks .
I was Told that blue lenses would prevent this?????anybodt heard of that.
Take care Rick

 
Old 12-17-2007, 03:50 PM   #13
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Re: photo sensitive seizures anyone?

I have heard, and somewhat grasp the concept, that some hues of lenses may help with photo sensitive seizures.

Not going into depth, (I feel like I am talking about my hobby, photography!) the color of the lens can filter out specific colors if THAT is the problem color for the person in question. By reducing one hue the others are increased. It depends on the strength of the glasses (filter) i.e. how dark they are. The other factor is what the source of the light is. Type A (standard household bulbs) bulbs produce a "yellow" light; while halogens produce more of a red tinge light. Florescent bulbs have more of a blue hue to them. Natural sunlight is closer to the full spectrum.

Sorry (laugh) Like I said, my obsession when taking pictures trying to keep the picture "true".

Best glasses to use are polarized (filter out the longer waves). They tend to be brownish tint.

However, yes, Flashes are horrible for those effected. Thats why I mentioned the winter seasonal decorations often seen (flashing or chasing lights).

--Travis

 
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