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UPDATED: Sat, 05/03/2008 - 8:24pm
Gina M...
Suggestions on how to deal with flickering lights?
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I would like to know if anyone has any suggestions about how to deal with flickering lights and terrible patterns that cause seizures?
So I started school again last week. This time a nursing program that basically stuffs a year of work into 4 months. I'm extremely excited about this. Overwhelmed on occasion too, but definately excited. The only fly in the ointment comes with the classrooms. The one classroom isn't too bad. The flourescent lights make my stomach and head hurt, but I can deal with that, and the occasional halo'ing of the teacher and other objects/people. But the second classroom is just awful. The ceiling is basically flourescent lights from one side to another, and along one wall is a solid line of them. You can actually see the flickering. It's nonstop. I spend almost three hours out of the day in that room. Oh yes and the wall paper is striped. Close together, beige/brown/weird orange color stripes. So I go between the two rooms for classes six hours every day. And like I said, that second classroom especiallyis bothering me. To the point where I'm not just having simple seizures, the zoning out, seeing auras, feeling auras type ones. Nope, I start twitching, my muscles start getting rigid and occasionally jerking without permission. I jump, I hate jumping, startles the hell out of me and anyone around me. And it's only getting worse.
I've put a call in to my neurologist. He has yet to get back to me. No worries, i'll be bugging him again on monday, or maybe skip him completely and aim for the epileptologist, his office is awesome to deal with, but I want permission to increase my lamictal. I'm not sure how much that would help, but it's got to be worth a try. And I can deal with the lamictal migraines for a few days in return for the next four months not leaving my twitching all the time. But I'm wondering if there's anything else I could do? I tried wearing my sunglasses in class, to see if that helped, it helped the visual since I could nolonge see the auras, but I could still see the light flickering. Made the wallpaper look 100% better let me tell you, someone should paint that wall! All of those walls. And whip the original decorator. But other than that, and making me feel like I'm sticking out in a major fashion issue, the glasses didn't help stop the seizure activity. So now what? The school wants to work with me, but they can't redo all the lights and redecorate just because it has a bad effect on me. Any suggestions?
By Gina M... at Sat, 05/03/2008 - 8:24pm | 133 views | 23 comments
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Recent Comments on this Discussion
Having researched this issue extensively for my son who has seizures in reaction to light and patterns, I have found information about patching. For him, sunglasses are not enough--he has to use a combination of the patch on one eye and the nonglare sunglasses (from the optician). We are still trying to figure out the whole tint thing--it is hard because he is a toddler to know. If you do try it, I would suggest talking with your opthalmalogist because you need to be strict about alternating-my son's said every six hours. Maybe just a patch would work for you. If you do try it, please post and let me know. As my son is a toddler, I would love to hear about it from an adult's perspective on how "well it works or not".
Best wishes,
Rema
That's interesting, about the patch. I think I remember reading about it somewhere. I have to admit a reluctance to try it. I already feel a bit like a freak having to wear a hat (ok, freak may be the wrong word, just feel like I stick out likea sore thumb) and adding a patch for class....I dunno. I know if it helps it shouldn't matter. Adult reasoning mixed with the general human desire to fit in I guess. I'll keep it in mind and let you know how it goes if I decide to try it. I hope it works for your son!
I managed to find the article on the treatment of photosensitive epi I mentioned earlier. It is to be found in the 1999 series of ''Seizure'', volume 8, p.444. Authored by individuals from a number of universities and specialist hospitals (Cambridge, Oxford, Essex, London) it describes the use of variously coloured lenses by three dozen or so patients for over 3 years and the effects of doing so on their epi and related phenomena (headache, stress etc).
Their conclusions are not conclusive but the majoriity of patients (70%) benefited to some extent by using tinted lenses, even if seizure frequency was not noticeably changed in some cases. The lens colours chosen by the patients after a variety of tests showed a preponderance of rose, blue and purple, rather than green, though one particular tint was not universally the most effective in reducing symptoms.
The full article can be found on the Science Direct website - www.sciencedirect.com - though that does not seem to be working at the moment. If you manage to access the website look for ''Seizure'' and scroll to the relevant date. You have to register on the site,however, but it is free. If anyone wants to read the article and fails to find same I can email it to them, as I have a copy.
Chris
Thanks for the lint Chris:) I'll check it out.
The glasses didn't really help much. But the brimmed hat really did, unfortunately , the school is adament that I cannot wear it without a doctors note. So I called my neurologist's offie to request one and got this, "Your doctor is out of the office until the end of next week. You'll have to wait until then because none of the other neurologists knows you and your seizure situation well enough to write it."
WtH is there to know, it's a HAT! Good grief. So now I need to figure out how to get through the next two weeks, because it will be two weeks they wont fax the note to the school I'd either have to pick it up or wait for it to be mailed. Since their offce is almost two hours away from where I live and I can't drive there and there's no one in my family to pick it up, i wont be getting it. BY the time I do get it, it wont matter because I'll be in my next "semester" (each semester is only a month long) and wont have to be in this particular room.
The seizure activity is getting worse, no wonder right since i'm daily getting triggered, and i'm at a lost as to what to do now. Maybe if I have a generalized seizure in front of them they'll get past their damn rules. They already have it documented that I have them, sheesh. I'm so frustrated by this.
Did you use regular sunglasses or the professional ones from a doctor's office that are specially coated to cut out the glare? The latter is what I was referring to, not regular sunglasses. If I were you, I'd wear the hat until I was able to get the note. Will they assume responsibility if you have a seizure in class? By the way, I find it disgraceful that a nursing program isn't sympathetic to a student with special needs. I'd take it up at a higher level. Simply unacceptable!
Regular ones, I do have some from the doctors office too, but I've scratched them all up. It was only one teacher who made such an issue of the hat thing, the other two were all for it. But the teacher made such a fuss, in front of the whole class and with the class over listening, she even called the director. Fifteen minute fiasco. At her words the director demanded the note. And then the teacher afterwards went into a long explanation as to why I was allowed to wear the hat for ONLY that day. It was downright embarrassing. I tried to be discrete and she blew me out of the water. After that it was easier to talk to my classmates about my epilepsy and be open then to try and protect my own privacy. And yeah, I know I should take that up with the director, I'm thinking about it.
I did have seizures in my last class today. I got the auras within a couple of minutes of being in the room. Not 15 minutes later I started losing awareness, I could hear but not respond, my muscles felt so weak I just wanted to lay down, and then my left side started to jerk in weird combinations. I couldn't have left if I wanted to, and believe me I wanted too! When I finally could regain some control I asked the teacher if I could sign out and she told me it was alright that I could leave early without penalty. She was so nice about it. One of the other groups students asked if I was drunk because I was weaving, I hate not being able to have coordination after a seizure. By the time I got home I slept for four hours. All because I couldn't wear a damn hat. I mean maybe it would have happened with the hat too, but i don't think so.
Sorry, venting there. I'm just frustrated, because this latest seizure was just wrong for the types I normally get and that worries me that my seizures are changing again. It was on the wrong side of my body completely. And it's messed up a whole lot of issues regarding transportation in getting to school. I have to walk two miles from the school to catch the bus, along a busy road, I can't walk that safely if I'm having seizures in class. I've thought about asking the teacher if I can just sit in the hallway with the door open and listen. That last class is fairly easy for me. I think the teacher would go for it as long as none of the other students complain to the director, although my class is a great group of people, I don't think any of them would.
Anyways, thanks for "listening" to all that:)
It's really bothering me the way the school is treating you. I believe this is discrimination and you should look into it.
Not that it would matter at this point, but you should let your teacher know, as well as the director, that you had a seizure in class that day. Inform them that your seizures may be invisible to others, but you are clearly experiencing them during classtime. You should also mention that you tried to handle this matter with discretion, and it was the teacher who turned it into an embarrassing fiasco for you. I'm sorry, in my opinion, this is not how an educational institution should be run.
This is how I'd handle it: Get that doctor's note if you have to but....I'd wear that friggin' hat every day and I'd be damned if they'd make me remove it...but that's just me. In fact, you should get the entire class to wear a hat to class to show their support. If the teacher makes a comment about it, I'd have the students all wear sunglasses also. By the way, sitting in the hallway is equivalent to Rosa Parks sitting in the back of the bus - Don't do it.
I'd love to hear an update, please keep us posted.
I think maybe the teacher was having an off day that day, because she's been nice, not just to me but the entire class since. I did talk to the director, she was firm that she couldn't let me wear a hat without a doctors note because it's an OSHA violation. I've never, ever, heard that it's an OSHA violation to wear hat to any of the college classes I've taken previously, so why it should be here I don't know. I don't quite believe it but I'm not too keen on the director either. No particular reason, or maybe directly related to what she said, I might have liked her otherwise. I told her and the other two teachers that teach in that room that I am having seizures in there. They just said ok. Huh, nice to know they think it's ok, right? It's making school rather difficult. I did finally inform the director that I will be wearing the hat until I can get the note next week. I didn't ask, I just let them know. But the lights still bother me even with the hat, just not quite as badly or as quickly.
I found out I'm not the only one the lights are bothering, three of the other students suffer from migraines, they get hit with them during those classes. And one of the other students has hydrocephalus and that room is triggering her condition badly. We've asked for the lights to be shut off, but they wont because the two rooms are powered by the same circuit, or something like that, it's nuts to me how they can have at least five sudents (not sure about the other class) who are having problems neurologically with those lights and yet they refuse to change anything.
It's nice to have validation that their actions really are unaffair. Thanks Sam.
You could throw rocks at them:)
You know something? There are days when throwing rocks at "them" sounds really good to ME!
In addition to, and or glasses, you could try wearing a baseball type hat with a "bill" or "brim." That might screen your eyes from the top enough that the lights aren't a problem.
I had never even thought about asking to wear a hat. We aren't allowed per the dress code thingy, but they'll make an exception I'm sure, all the guys are going to be envious. One of the other posters suggested the hat idea too, which makes me glad that I threw the question out to you all, great minds and wisdom.
Gracias:)
The suggestions of getting the right hue of glasses really helps! The non-glare grey sounds great! My opthomologist gave me a copperish color one and that helped w/ the flicker of sun light. You are dealing w/ classes and stresses. If you can get the room changed good luck! I worked in several hospitals but helping the patients, made it worthwhile! Getting enough rest and enough sleep and yes the right amt. of medication daily makes the day go a lot better! I wish you the best!
Thanks:) I'm actually just remembering that my prescription glasses, that I never usually wear because they're rarely needed, have these clip on type sunglass shields that go over them, they're kind of a coppery color, i'll check and see if they'll work. Alittle less conspicious than my regular sunglases.
Where you a nurse?
GINA, I WAS GOING TO SUGGEST THE HAT AND GLASSES. I WANT TO ADD SOMETHING TO THAT. EVERYONE CAN SEE BETTER WITH COLORED LENSES, BUT YOU NEED TO TRY ALL THE DIFFERENT COLORS AVAILABLE TO FIND OUT WHICH WOULD HELP YOU THE MOST IN THIS SITUATION. ALSO, IF YOU GO TO AN ASSOCIATION FOR THE BLIND AND VISUALLY IMPAIRED, OR SOMEPLACE THAT SELLS THOSE TYPES OF SUPPLIES, THEY CAN HELP YOU. YOU WANT TO CONSIDER GETTING GLASSES THAT DON'T JUST COVER YOUR FACE, BUT THOSE GOGLE (GOGGLE?) TYPE THAT COVER YOUR EYES FROM THE FRONT AND THE PERIPHERAL VISION, TO COVER ALL BASES. ALSO, FIND A HAT THAT COVERS FROM ALL SIDES TOO. A BASEBALL CAP WOULDN'T DO THAT. I AM TALKING ABOUT A MORE FLOPPY KIND OF HAT, THAT YOU CAN PULL CLOSE TO YOUR GLASSES AND CUT OUT THE LIGHT FROM THE PERIPHERAL VISION ALSO.
I KNOW IT CAN BE A PAIN. I HAVE TO WEAR HATS ALL THE TIME, WHENEVER I GO OUTSIDE TO CONTROL THE PAIN I GET. I HAVE HAD TO DO IT FOR PROBABLY 25 YEARS AND I HATE IT.......TALK ABOUT A LOT OF BAD HAIR DAYS! I CAN'T TOLERATE THE LIGHTS FLICKERING EITHER. I HAVE TO CLOSE MY EYES, COVER MY FACE AND LOOK AWAY FAST. HOPEFULLY, THE SUGGESTIONS PEOPLE ARE GIVING YOU WILL HELP. BECAUSE I ALSO HAVE TO PROTECT MY VISION FROM THE SUN SO I DON'T LOOSE MORE VISION, I HAVE BEEN TO LOW VISION SPECIALISTS, AND LEARNED ABOUT THE EFFECTS OF DIFFERENT COLORED LENSES. THEY AREN'T JUST FOR THE VISUALLY IMPAIRED. LAST CHECK UP I HAD, I SAW BEST INDOORS WITH A GREY TINT AND OUTSIDE WITH PINK. I WANTED TO GET THAT PART IN, SO YOU WOULD UNDERSTAND WHY IT IS IMPORTANT TO TRY DIFFERENT COLORS WITH THE LIGHTS. GOOD LUCK, I AM SORRY YOU HAVE TO DEAL WITH THIS. FLICKERING LIGHTS COULDN'T BE CONDUSIVE TO ANYONE'S GOOD VISION.........SOUNDS TO ME LIKE THEY SHOULD REPLACE LIGHTS THAT DON'T WORK PROPERLY. LOVE YA, JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
I AM YOUNGER THAN I LOOK, OLDER THAN I THINK, AND WISER THAN I KNOW......EEEEEEEEKKKK!
I suggested to the poster to ask to have the room switched, because when my son broke his leg in high school last year and couldn't make it up to the second floor for class, that's exactly what they did. The school moved the class to the first floor, and I didn't even ask for it!! It certainly can't hurt to ask!
I have a few suggestions with regard to the lighting. When I was in college, ironically it was my professor who told me that I was photosensitive! I'm not even sure if he knew I had epilepsy, but he noticed how I kept posturing my head away from the lights and told me that I was photosensitive. Now that's a perceptive teacher! He told me to get non-glare gray tinted lenses, which definitely helped. They weren't ordinary sunglasses, they took out the glare. You can get them at any optician.If you'd rather get glasses that wrap around, to protect your peripheral vision, that might help. You can try wearing a baseball cap to block the flickering light.
As far as the wallpaper goes, the best suggestion would be to ask the school to kindly switch that second class to another room. I really believe that they would accommodate you on this request.
Baseball cap, I could work with that, I am going to look so ridiculous by the time I'm done, my poor classmates lol. Here we have all these dress codes and I come along wearing weird things. Ah well, can't be help. I'll talk to them on monday about letting me try to wear a baseball cap, with or without the sunglasses thrown in, I'm still trying to figure out if there's a specific tint of glasses to look into getting, oh wait you mentioned that gray nonglare?
Unfortunately, I don't believe moving the classroom is an option. While the course I'm taking is connected to a major college here, the actual program is a community nonprofit group and the building is small, there's a lack of place to move it too, unless they move it into the main lobby, which I'm all for but I don't see happening. Lots of nice, open windows in there, good sunlight:) Lots of distractions and loud noises too. But i'll mention it anyways, on off chance it might actually happen. Kudos to your sons school for taking such a step to accomidate!
My vanity is going to take a beating on this, I never thought I was vain, but bringing attention to myself is so out of my league. And I have this need to look speakers in the eye when I'm talking to them. I wonder what I could wear that would look tasteful and discreet but still be effective....hmmm. vanity 101 thy name is Gina lol. God don't mind me it's late and I'm rambling.
Thank you so much!
Hey Gina,
My professors were great when I was in grad school. I brought in a letter from my neurologist explaining the issue to the Chair of the department. Lamps were purchased and put into the classroom the following week. The reasoning the professors provided to the students was "fostering an informal interactive environment". It actually worked on numerous levels for all of the students.
When I was in med school I had tinted glasses but it was somewhat troublesome because of lab requirements. Since you're in a nursing program I don't know if it will be effective if you need to review slides, do phlebotomy, or other things that require keen visual sensitivity. Just try several different things and be patient. It can be frustrating but it sounds like you're doing great! Keep it up :)
Take care of you!
SLD
You're welcome, let us all know how it turns out. If a baseball cap is too boyish, perhaps just a visor would do.
Have you tried wearing tinted glasses? They often help people who, like
you, suffer from photosensitive epi. I seem to remember an article on
the subject in the UK quarterly journal ''Seizure'' a few years ago
which I could probably resurrect if interested. No panacea but they
seem to help some people.
Chris
I haven't tried wearing tinted glasses, just regular sunglasses. I wonder if there's a specifc tint that would work best, blue seems to be coming to mind, I must have read that somewhere, if only I could remember where, darn memory. Anyways, thanks:) Tinted glasses are now on my list of must haves.