strobe light seizures ruining my life!!!

October 10, 2003

hi there, well things have been going okay for a while now. i hve been working steadily and things are going good.

about three weeks ago tho the sun position changed and now i am finding that everywhere in this state that i go i am bombarded with strobe lights from the sun filtering through the trees, poles, buildings anything that is it's way..

today was the worst!! while trying to get home for work, i got a flat tire..it was bad enough that i knew the sun was getting lower and lower an the lower it gets the worse cause it can go through more things, more intensely.

so my boyfriend came and fixed the tire, then i followed him home, till i got stuck at a light and he went through it.

it took me an extra ten minutes to get home after he got home because i kept trying to go slow to less intensify the strobes and tried to go in directions that would be less intense, but nothng was working!

my boyfriend said to call him if i needed help. he was home for ten minutes before i even got home and i was a little hurt that he did not call to check up on me, and i told him that, and he apologized, still i feel hurt.

my problem is that i am so pissed and so angry with everything, not really him, but with all the problems i have out here in colorado versus iowa or minnesota, where we are not so dammed close to the sun, and since we are not so close to the sun there, it is not so intense, and i did not have to worry near as much as i do here.

i was on meds for this for many a year, but when i got pregnant 2o years ago my dr. took me off and i've never gone back on them.

they never did anything to give me a peace of mind, if anything they would give me a false sense of security, but i never got any security from the meds i took then, and i know i would not get any security from them now either.

so i lived a very sheltered life because of all this, and ended up battling agoraphobia, and i am thinking it may happen again now, because the last thing i want to do right now is see the outside world.

i was so upset and angry on my way home, that i cried from sheer tension and frustration and anger that i have to go through this b.s.

i tried to think of those less fortunate, but it did little to sooth my broken spirit.

i don't expect any answers here for this..i know they have tons of new meds, and i never had problems with my old meds, they just don't make me feel safe anyway.

i would still do everything and anything to avoid strobe lighted areas for fear that they would bring on a seizure, and i still life my life that way, but even more constrictive now with the turning of the world places a different angle on the sun, and bringing the whole sun and world every so close to me!

i cannot escape it at all, and i feel that to become a total recluse would literally behoove me.

thanks for listening..

October 10, 2003

I think first off, you need to go to the dr again. As long as the meds were working. There is a reason why they put people on them. You cant let this ruin your life. And if you are having seizures, you should in no way be driving. You seriously need to see your dr to get meds. And also to maybe get help with the fact that you are slipping inot the state of agrophobia that you were suffering before. Becuase there is no reason for you to suffer double with this condition. Best of luck to you:)

October 10, 2003

colorado versus iowa or minnesota, where we are not so dammed close to the sun, and since we are not so close to the sun there, it is not so intense, and i did not have to worry near as much as i do here.

Where do you get this information? I see that Colorado is south of Minnesota, but it seems like it's pretty much on the level with Iowa (or close.)

October 10, 2003

i guess i should of mentioned that i have not had a seizure since 1993 or so. i do know how to avoid them and i have avoided them all of my life so far, with the exception fo sept 1993.

before that i had not had one since 1978 when i goofed up on my meds.

i know how to avoid them, but it is hard out here in colorado because we are so much closer to the sun then in minnesota and or iowa.

colorado is much closer to the sun, due to the elevation. the elevation of denver is around 5200 feet, while minnesota and or iowa are around sea level, so you do the math.

i have lived in all three places so i know the different intensities of the sun and the seasons.

i can walk into a room and tell you when i floursecent light fixture is going to go out, because it has an ever so slight flicker that most can't even detect it but because of my sensitivity to the lights i can detect it when most can't.

the reason i dont' go back on the meds is because i don't know that they ever protected me, i never ever felt safe on them versus being off them, so it does not matter.

i know how to avoid them but lately that has meant to avoid going out alot. even if i were on medication for this right now, i would be doing the same avoiding.

October 10, 2003

Ah, elevation. Yes, my brain is clearly not functioning tonight!

October 10, 2003

don't they have specialy desinged contacs

for that?though they might

October 10, 2003

contacts for something like that would be awesome, but doubtful. it has to be something that could block out the rays totally and i don't think any can. heck when we go places like in the mountains, i can close or cover my eyes with my hands and still see right through them, so i literally have to bury my face in my lap or clothing or something. but thanks for the idea and i am going to go to the epilepsy board and ask around there if anyone has heard of such a thing, wish me luck!

October 10, 2003

may God bless you with what you with that blessing

October 11, 2003

Strobe light seizures are triggered by light, or flickers of light. The elevation where one lives and the "intensity" of the sun has absolutely not a thing to do with it. It has nothing to do with the sun's intensity, it's to do with the flickering effect of, say, the sunlight shining through the trees, that can trigger a seizure...so your belief that living in Colorado is putting you at greater risk doesn't hold water.

If you haven't had a seizure in 10 years then why are you making such a big deal out of it? I have an aunt who has this and she belongs to a support group for people who suffer from it. People who truly have this have frequent seizures, not one every 10 years. For all you know, you could have been misdiagnosed. Did you have many episodes of seizures prior to being diagnosed? Or just a one-time episode which was "thought" to be a seizure? How do you know for sure it was a seizure? Was it witnessed by a doctor?

And why on earth, if you feel this condition is such a pain and keeps you isolated, wouldn't you go back on the medications? Wouldn't trying them be better than isolating yourself and living in constant, perhaps-totally unnecessary paranoia about triggering a seizure?

People who truly have this don't go 10 years without a seizure so it sounds to me like you were grossly misdiagnosed.

October 12, 2003

i beg to differ with you. i lived in minnesota all my life and the only time i had a strobe light seizure was when i had messed up on my meds, when i had to change them, i did not wait long enough for the new ones to get in my system and kick in before stopping the old ones.

i have had three on them in colorado and i blame it solely on the more intensity of the sun filtering through the trees.

i have lived my life literally in a shell, and developed avoidant personality disorder because i have spent all my life hiding away from the sun and it's strobe effects on everything.

i was on medicaton years ago but my dr. took me off when i got pregnant and we agreed that as long as i was avoiding the strobes that i should be okay.

i never felt safe on meds or off. my whole life has been lived in hiding and nothing else.

now i am 46 and realzing just how limited and limiting my life has been. it is ever so slowly slipping past me and i don't know what to do and it makes me angry and so sad at the same time.

the reason i have not had a seizure in ten years is because of how secluded i have lived my life.

i am ever so cautions and when i am tired i am more prone to the effects of the strobes, so i stay home when i am tired or at least closer to home within my safe little boundries.

oh and i was diagnosed with photo sensitive convulsive disorder years ago through an eeg.

i don't know about your aunt and what she has, i just know that because i have hidden myself so well from them that i have warned them off, but in the process have brought my whole life to a screeching halt.

this all came up because the other day whilst driving home from work, it was just the worst i have ever seen it!

i was totally petrified to even blink for fear of losing focus on the road! i was so ready to pull off and wait there till sun set...

that was theeee last straw! i want to do something but i don't know what to do now.

i am still so scared of having a seizure, and i know meds wont change that fear what so ever.

October 12, 2003

You said, on one hand, that you haven't had one of these seizures since 1993 (10 years). However, you claim that since living in Colorado, you've had 3 of them, though in one place you indicate you've lived in Colorado for about 5 years or so. So what's not adding up?

And if you could so easily be triggered into having a seizure while driving there in Colorado, maybe you should be ABLE to drive? I mean, for obvious reasons if you're always "this close" to having a seizure (and therefore not in full control of your moving motor vehicle should you have one), well then you shouldn't be on the road. Plus if you're mind isn't on driving but more on being paranoid about strobes and lights and if you have such trouble like you originally described, are you really a safe, defensive driver? Don't come around my neighborhood!

October 12, 2003