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

morgan86

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hey everyone
so i've always wondered this but unfortunately i forget to ask it.. i was wondering wut happens to u all who are photosensitive (if thats the right one) when u see strobes.. can u describe the feeling? i too have a problem with them but just.. out of curiousity i was wondering if u all had the same feelings sensations... see the same thing. im basically asking what happens when u see strobes.. do u all go into emediate seizures cuz i usually dont..
when i see strobes i get disoriented very quickly and cant seem to control my eyelids. they start to blink rapidly.. like they are trying to catch up with the lights.. i dont hit the floor emediately but i feel the auras coming. usually im able to get outta there with enough time like during movies with light effects or police ambulance firetruck lights.. but i almost always get the spikes in me brain waves during the EEGs when they flash the lights on my face.usually go into slight seizure activity. i think if i were to sit in a room with strobes i'd eventually go into a gran mal (since im prone to those)

so ur thoughts? how would u describe YOUR reaction to strobes.. do u have any tips? once i tried sunglasses when my friends garage light started flickering rapidly.. it seemed to lessen the effect. of course i'd never risk that in a club or something. i participate in an annual haunted house with crazy lighting but i usually either avoid those areas that have the lights or just rush thru them. anyone got any tips? im VERY curious
 

huskymom

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

Endless

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I don't have seizures when they have that light test when they do EEGs. The only things that bug me in that category are one of my LCD TVs, the sun flashing through trees when driving, ceiling fans that are going exactly the right speed, the overhead lights in IKEA, and once in a blue moon candles flickering in restaurants. (Gee, I guess that's a lot.)

I start to feel really weird. It's hard to describe. It's like the tiny little micro-ripples you see reflected on the bottom of the pool but much tinier, but that's inside my body and my brain. I feel watery and rippley and kind of vibrate-y. Except that's not it. Words just aren't getting it. I just know something is wrong.

If I don't remove myself from the offending item I end up with a seizure, usually a CP. Sometimes I don't have any warning at all and I don't even know I've had a seizure until someone asks, "why the heck did you just do that?" (My complex partials are sometimes a little on the weird side)
 

huskymom

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YES!! sunlight through the trees!! I was sooo happy to find my wrap around Raybans!!
 

morgan86

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hey endless, just out of curiousity you said your complex partials are sometimes on the weird side.. wut exactly do u mean by that?
 

Endless

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Hi, Morgan.

lol... I'm finally to the point where I can laugh at my CPs a bit. At least what I've done in the past. They still scare me and upset me when they happen, though. Most of the time I can't remember them, sometimes they are like a dream.

I've given my dog away to a neighbor. Just handed over the leash and wordlessly walked away. (or so I was told)

In a restaurant I started moving my chair back and forth, back and forth, back and forth at the table. I was conscious but I couldn't stop. Then I lost cousciousness and don't remember the rest. The person I was with told me that I dumped my silverware on the floor, poured my water onto the table, and threw lemon slices at a neighboring table.

I woke up naked on my bed. The last thing I remembered was walking in the front door of the house.

I destroyed a laptop. From the damage done and where I found it, I assume I threw it on the floor and stepped on it.

I've gone outside at night in the pouring rain with no shoes or coat. Thank god I had cloths on, and that I didn't get out to the busy road. When I came out of the CP there was the shock of the cold, and I just thought "what the *&%$?!" The last thing I remembered before that was falling asleep snugly in bed.

One of my auras when I'm going to have a CP is getting very clumsy. I drop things, break things, run into things. For some reason, in the moment I never think, "A CP is coming..." I just joke about what a klutz I am.

At work I've said very embarrassing things, carried on like everything is normal but I have no memory of the event, and I've put things in crazy places.

I think there have been many that I just don't know about. I live alone so there is no one to tell me what happens. Often times I'll get the feeling that I lost time, becasue the TV plot jumped ahead, or I'm reading a book and suddenly I'm 2 pages ahead, or I'm walking a familiar route and suddenly I'm a block ahead and confused about where I am (but it's not a SP Jaimas Vu).

My doctor and I agreed that unless there is objective evidence of a CP, we won't count it because there may be a logical explanation for what happened. And that's been true in several cases. Objective evidence would be something broken, I'm in a completely different place than I was a second before, I'm injured (more than bruises), there is a witness, etc.
 
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morgan86

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wow! thats very similar to me. the clumsy part. i joke w/ my husband cuz of how clumsy i am normally but when i have a seizure coming on its ridiculous. i normally try to go away from people right before (fear of the embarrassment that follows) so i often end up sorta getting up and running or trying to run off then smashing into things and then collapsing
 

Stinkpot

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No type of seizure activity for me. They just hurt my eyes if you look into them really close - but hey, who's eyes wouldn't hurt? Nothing good about staring at a strobe light for anyone!

As a reminder, I stared into one once to prove to my annoying parents that strobe lights have no effect on me(yes that was quite stupid of me). I'm more likely to have a seizure from wasting my breath to them than strobe lights. They wouldn't even let me go to the halloween party one year cause there was strobe lights. I was sooooooo mad! *sigh* I wish I could move out.
 
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morgan86

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cool thats very lucky for you! i've managed to deal when i do get caught in them.. but its still very bothersome. it sux that your parents have come down so hard about the issue. but look at it this way.. my mom refused to believe the diagnosis leading to further problems and more uncontrolled seizures so atleast they are taking it serious. sounds like they really care about you. im sure over time they'll lighten up
 

Junebug

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No type of seizure activity for me. They just hurt my eyes if you look into them really close - but hey, who's eyes wouldn't hurt? Nothing good about staring at a strobe light for anyone!

As a reminder, I stared into one once to prove to my annoying parents that strobe lights have no effect on me(yes that was quite stupid of me). I'm more likely to have a seizure from wasting my breath to them than strobe lights. They wouldn't even let me go to the halloween party one year cause there was strobe lights. I was sooooooo mad! *sigh* I wish I could move out.
My parents were like that too when I was a teen. I was the one who was always treated like I was going to break because just about anything. . . even hot weather, (especially when a person with E gets a sunburn,) can cause a seizure just like it can cause heat stroke. It was no use I finally gave up.
 

sandi

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I thought I was pulling Weeds once I pulled up all the plants in my newly planted veggie garden only realized when I woke up and the do was licking me
while I was face down in the MUD, the sprinkler was also running!
 

Chel

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During my EEG my hands twitched during the strobe test, and something else happened (can't remember now).

I recently went to a party where a blue flashing light was used. Blue light is a trigger for my TLE anyway, so it set off pain in my temporal lobes, my legs twitched, and my face became tense. Fortunately I was able to turn the blue light off (it was a small party) without anyone noticing. The other flashing coloured light balls didn't worry me - just the blue one.

During my recent trip to Las Vegas, I noticed my feet tingled when the flashing lights came on. I stayed away from The Strip and avoided most of the flashing lights, but did notice the few I couldn't avoid affected me. I kept my eyes to myself, as it were, and stayed inside at night.

My seizure activity seems to be getting stronger, very quickly, even though I'm on anti-seizure meds... However, I have been exposed to a lot of triggers in the last month (while travelling). Those little TV screens on airplanes set my legs twitching, too.

So all of my photosensitive seizure activity so far is simple partials, to answer your question, morgan86.

Chel
 

dfwtexas

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When I had my EEG when I got diagnosed, it did not show me to be photosensitive. When I started noticing a connection to lights and mentioned it to my doc, he told me to NEVER discount possible triggers and that triggers could change over time. However when I started to track what could be my triggers, it dawned on me that 90% of my seizures were at work....working under big floursentate lights! I take frequent breaks outside to get a break from them. It has gotten better with increased Keppra dosage. I also attend "mega church"that has rock band with lighting effects. I wear my sunglasses there and still look down a lot...my friend jokes it just looks like I am in deep prayer! LOL I have found that red lights flashing is the worst and it does seem there is some documentation the red lights are huge triggers. If I look at the light, it really feels like I am being drawn into the light....and if that feeling starts, my eyes will usually roll to the back of my head. Thankfully I haven't had one of those in awhile..thank you Keppra
 

Hand of Blood

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i never let them do the strobe light test durning my test i couldnt stand it was only on a sec and was horrible so i dont know what triggers mine alot of times i been on pc or playing games so i guess it could be photosensitive but not all of the time lights through trees really annoy me!
 

sah313

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I am not sure if I am photosensitive, i do get really uncomfortable with flashing lights and I start to see colours in the light. Doesn't sound like a normal thing to happen though. x
 

sandi

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I just rec'd my Doctors records I am sooo pissed! boy what a piece of work he thinks I am!
I commented on my seize above that I think started as a partial then full Generalized, with me waking up with the dog licking my face and I had pulled all my new veggies out of the ground well When I came to and got myself together I wrote down all I remembered and had hubby drive me to his office as I was getting worse on the prozac and Lyrica combo and wanted off!
His comments were "Patient Exhibits Bizzarre PANIC DISORDER"
WTF how often do you WAKE UP FACE DOWN IN THE GARDEN! I SHOULDN' T BE SCARED SH@! LESS!
Start to finish it was about 2 hours out in the Garden - So I don't remember all
must have slept as well!
 

Chel

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His comments were "Patient Exhibits Bizzarre PANIC DISORDER"
Is this doctor a GP? Sounds like you need a good neurologist. Surely this comment didn't come from a neuro - if it did, time to change to a good neuro! In fact, based on a misinformed comment like this, I'd change doctors completely. Makes me realise how lucky I am with mine...
 

sandi

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He retired, unfortunately he was the only Doctor without insurance that I could afford and would give me the Zanax or Valium the only things that stop spells.
what I found out was that
Although I was his patient for 9 yrs When he moved offices all my records for the 1st 6 years were lost. So he was NOT seeing past seizure and NOT taking into account MY TBI although he kept writing it!
I didn't have luck with neuro either I spent thousands and he thought I had a stroke and wouldn't give me any E meds as he could not SEE it on EEG!
They weren't typical as mostly sensory and visual.
It's not like I haven't been to Numerous DR"S and NEURO's they just don't reach conclusions and run tests that show nothing and I end up Broke - So for a WHILE I got Depressed and Gave up Easier to Drink and when your on Anti-depressants -you basically don give a CRAP ! I still had seizes anyway But again nothing to anyone but me - So I suffered in Silence and HID.10 yrs ago I was on Depakote but that ended up being Bad for me and Dr had to give me Anti-depresant for side effects.
So now I'm trying to FIND LOST RECORDS! 6 yrs of tests and neuro visits ect
 
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sandi

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MD, GP yes
and for the RECORD ONE NEURO WROTE REFER for PSYCH EXAM!
And I had to go get some tests done to prove I wasn't nuts I really only had 37 %
recall of Faces and short term memory Damage could not reconstruct spatial things nor remember words in order or numbers

Was tested for early Alzheimers and Dementia- No conclusions
Given Paxil at the time to help me adjust to being off the depakote
Had 2 generalised seizures the first week added Xanax on top for a while
then moved to Lexapro with Xanax as needed.This was when my records were lost! I started having extreme agitated so called Panic Attacks had spells where I couldn't see or walk that's when I gave up driving after several bouts with even more drugs like cymbalta , Lyrica, ect.
Again I couldn't go PAY FOR MORE TESTS AND GO TO NEURO i HAVE NO INSURANCE , BUT i'M NOT POOR, JUST ENOUGH TO NOT QUALIFY.I have no savin left to waste on Dr's not reaching conclusions
 
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