Photosensitive epilepsy
Introduction
We would like to thank Professor G F A Harding, formerly of Aston University, England and Professor Stefano Seri, of Aston University and the Birmingham Children’s Hospital NHS Foundation for their help and support in producing this information.
Photosensitive epilepsy is the name given to epilepsy in which all, or almost all, seizures are provoked by flashing or flickering light, or some shapes or patterns. 
Both natural and artificial light may trigger seizures. Various types of seizure may be triggered by flickering light.
Many people think that everybody with epilepsy is photosensitive, but in fact only five in every hundred people with epilepsy are. Photosensitive epilepsy usually begins before the age of 20 years, although it is most common between the ages of seven and 19. Photosensitivity tends to affect girls more than boys. There is also evidence that photosensitive epilepsy can be passed on through the genes.
Diagnosing photosensitive epilepsy
One investigation that is carried out to diagnose epilepsy is an [electroencephalogram], or EEG. The EEG records brainwave patterns from the continuous tiny electrical signals coming from the brain. During one part of the EEG, you are asked to look at flashing lights, to see if this triggers epileptic activity in the brain. If it does, then this may indicate that you have photosensitive epilepsy.
Hertz
The word hertz (Hz) refers to how often something happens in a given time. In photosensitive epilepsy, hertz (Hz) refers to the number of flashes or flickers a second. When talking about televisions or computer screens, hertz refers to the rate the scanning lines ‘refresh’ themselves.
Most people with photosensitive epilepsy are sensitive to 16-25 Hz, although some people may be sensitive to rates as low as 3 Hz and as high as 60 Hz.
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Comments
My son suffers from marked photosensitivity and has to be constantly aware of his surroundings. Last year an incident happened which we hadn't thought of even after 5 years. Our bathroom window faces our road and has a frosted pane of glass with leaf patterns on it. A lorry with yellow flashing lights pulled into our road and was stationary outside our house. The flashing lights magnified in each of the leaf patterns making it look like a mass of flashing images. Unfortunately, my son was in the bath at the time and ended up having a seizure. We now pull down the blind each time just in case this happens again.
I was diagnosed with Photosensitive epilepsy about a little less than a year ago. I am 16 years old and I am confused. My neurologist got mad at me one time when I couldn't follow what he was saying, so why waste his time? I was just wondering...I have "seziures" but they aren't really, there wierd because all I do is faint. I faint, tense up, get shaky when I come to and then move on. Is it really seziures I'm having? I don't really think so, I pictured seziures as a spastic motion. I've seen one before, and everyone I know says I don't do that, they say I just tense up. So what's the deal?
Dear Helena,
I've got photosensitive epilepsy too, and actually your symptoms don't sound so unusual. My seizures include seeing a special multicoloured circle that only I can see (an aura) and then I black out. When I'm blacked out apparently I do all sorts of things: foam at the mouth, tense up, jerk in a spastic motion, grind my teeth, bite my tongue etc, and wake up feeling totally exhausted. Some people who have absence seizures just zone out for a short time (like going into a temporary coma) and then come back around and keep going on with what they were doing. I think what you are picturing is the "classic" seizures, which are common, (and usually the ones shown on TV) but they are certainly not the only type, and so I would encourage you not to feel bad just because your symptoms don't match those you've seen elsewhere. Either way, I think its important to persist in talking to your specialist, so you can understand your condition. If your current neurologist isn't helping you, don't hesitate to ask him more questions to clarify things, or even look for a new one! After all it is really important you understand what's happening and it's your neurologist's job to explain that to you!
best wishes!
If you have photosensitive epilepsy. Wear sunglasses. Haven't had a seizure since.
I find that wearing a cap helps a little in shutting out excessive glare/sunlight when out and about, and in busy places. The worst nightmare though is light shining off water if you have this type of epilepsy.
Hi,
I'm new to this form of condition. My 6 year old son (Reinardt) has been diagnosed with PSE last week and I need as much information possible. It all started about 3 months ago when we noticed that he rotates his eyes when exposed to the sun. The first EEG was negative. When his condition became worse I decided to take him for a second opinion. Another EEG was done. Within a few minutes he had his first seizure and then another when he was exposed to the light. It's been 19 months since his recovery from Guillian Barrey Syndrome (a very traumatic immune illeness - was paralized from head to toe). This was a blow for us, because of the traumatic ordeal and now we need to get over this obsticle. Any suggestions on how we can make life easier for my little boy?
Greetings from Jane (Reinardt's mom in South Africa)
Hi Jane
Like your son (Reinardt) I too was diagnosed with PSE when I was 6 years old. Next month I'll be 27. I've lived in the UK for the last 6 years, but I'm from South Africa and always will be South African.
This website and others have so much information, it has more info than than ever before. Also you have the added bonus that these days the internet is freely available. When I was 6 and my mom was looking for information, she was truly alone in her search.
The only thing I can give you, Is my life story(so far). This I think is just as valuable as the information that you'll find on websites, as it a real life story of the ups and downs of living PSE. The learning to mould you life around PSE and not let PSE mould itself around your life.
Hope you and Reinardt are well.
Kind Regards
Ryan
I and the consultants that I am seeing in the UK are unsure whether I have epilepsy or not. I have seizures but don't lose consciousness. I am sensitive to strobing lights which set me off. I was in the cinema last weekend and there was a car chase at night with car headlights creating a strobing effect. I therefore had a seizure in the cinema. This has happened before and also light flickering through trees on a sunny day and strobing effects on TV such as "flashback" scenes. Is this symptomatic of "classic" epilepsy? Can anyone offer any advise?
Hello all,
I don't suffer myself, but my 48 yr old partner does. The main trigger for her photo reaction is flash photography, but only that found on digital cameras. (Xenon I believe). What does seem strange is that it is not only "live" flashes, but also through TV. Being a Formula 1 follower, the onset of night races is very bad news because of the increased intensity of the cameras, and a recent visit to the Louvre to see the Mona Lisa was a disaster now that they allow photography. It appears from what I've read so far that different people have different triggers. Has anyone seen any results/research for filtering glasses?
Sorry, I think it was Helena (don't have the original posts in view). If your consultant really accused you of wasting his/her time, and you ARE suffering blackouts after photo exposure (or anything else is triggering such a thing), you must demand to see someone else. It is not acceptable if you are having this problem for someone who is supposed to be a professional to dismiss your real problem. If the person who you are seeing cannot identify the circumstances THEY should refer you to someone else for a second opinion.
My partner also suffers from full on epileptic seizures, which are brought on by other things. Sometimes the photo triggers lead on to a full seizure, depending on the circumstances (tiredness/stress/being rather drunk!! TEE HEE).
I wish you all the very best of luck with your varied circumstances. Whatever, please don't let it limit you more than it has to. We have found that the more people who are aware of the situation, the more normal life can be. Everyone round here knows that my dearly beloved has this problem, and know what to do if she throws one. That is a much safer way to be, and gives more freedom to do whatever.
All the best
Brendan
I was diagnosed with PSE In Jan 2001 when I was 21 and at university living 350 miles away from my family. I had to go through a brain scan and an EEG before I was diagnosed: no one told me I needed to take anyone with me, or that it would be best to take the person who saw me have the seizure. The procedures weren't particularly explained to me and I wasn't offered transport or a place to talk about this bewildering and scary development.
When I had completed both the scan and EEG the consultant at the hospital only had the scan result and wanted to send me away saying my scan was clear so I was OK. It was only when I pressed for him to ring to get the EEG results that he did this, and then stated that I did in fact have front cortal epilepsy with a photosensitive component. He didn't really explain what this meant, whether I would only experience a seizure as a result of stimulus or whether I could one day just begin to have seizures for no obvious reason. I spent about 10 minutes in total with the consultant and he sent me away with no follow-up appointment and very little advice.
Since this time I have had no further tonic clonic seizures and a handful of partial seizures; I think this is largely due to the fact that I now watch TV less, go clubbing less and avoid disco balls/flashing lights as much as possible.
I feel that the majority of my friends and family don't understand just how massively being diagnosed with epilepsy has effected me. Because I don't have frequent seizures and I'm not on any medication, it feels like people feel I'm being overly cautious when I explain I can't go into a bar because of the lighting, or when I have to leave a theatre because of the strobing. People always say "well you haven't had a fit for a while now so you're OK aren't you?"; what they don't see are the hundreds of little adjustments I have to make to my daily life to try and avoid the stimulus that could bring on a seizure again. It's not that I worry about it every second, but I have to constantly be aware of things that others don't have to think about like the way that light is being flickered through trees, the flashing lights of workman relaying the pavement on the motorway, emergency vehicles stopping on the road outside my workplace, TV programmes with rotating patterns or flash photography.
I have had no further support from the NHS; I understand very little about my condition other than what I've read on websites (which in itself can be confusing) and I feel that no-one else understands how PSE has changed my life. I wonder what support I should be getting and also where I can go to talk about how I feel. PSE influences all aspects of my life, from the kind of places I can go with my friends, the TV programmes I can watch, swimming alone etc. The consultant who initially diagnosed me gave me a confusing list of stimulus to avoid and I feel I've just been left to try and muddle on with no support. My experience makes me wonder how many people who experience PSE are just given the same confusing list of stimulus to avoid and then sent out to monitor and deal with the condition by themselves. My family were never offered any support, not even a leaflet on first aid and I have had to have many difficult conversations with people trying to explain what they should do if I have a seizure.
Perhaps if the consultants' ever experienced seizures themselves they would spend more time offering support - because they are both terrifying, ailenating and challenging. Dealing with them alone is a very difficult and tiring job; I always have to be on my guard, making sure I am aware of my environment, looking for potential lights, monitoring how lights are making me feel and taking a calculated risk that I'll be OK. Even if I'm sitting at a bus stop and a council vehicle with a flashing light stops near me I feel nervous, worried and this panicky feeling comes on frequently because it is so hard, in this age of technology and ever increasing light shows, to avoid flashing lights and projected patterns. I never know for sure how a situation will pan out and it is this unknown element that is the scariest of all. While I may not be experiencing seizures on a daily or even monthly basis I live with PSE every day of my life.
Just want to say that I have had very similar experiences with the NHS. I did not find out till my 5th neurology appointment (and well after my EEG results had come back) that I was photosensitive. At the moment this is so bad that even wrapping the Xmas presents in shiny paper set me off. I am having to make serious adjustments to my life as I am having multiple partial seizures each day, which so far are not responding to medication. I feel very disappointed with the treatment I have received - my varying neurologists have been extremely condescending, initially telling me they were sure it wasnt epilepsy and they were sure I would get better just from having the 5 minute consult! Needless to say I didnt and several months later was diagnosed with TLE.
I truly sympathise with your predicament as at the moment this is ruling my life too, and friends do not understand why I cant go out to the pub, get drunk, and do all the things I used to do.
Hi
I was diagnosed with epilepsy at the age of 29. With no warningI had 2 full tonic-clonic seizures in 2 differernt shops. I had noted for some years previously that some shops and fluorescent-lit or strobing environments made me feel confused and sick, but I had no idea that it was epilepsy.
My neurologist sent me for an EEG. The EEG operator was helpful and pointed to epileptiform activity starting in the occipital lobes (vision area, back of the brain) when I was shown a strobe light at certain frequencies. She had a pair of '70s Ray-bans handy which were very dark and tried again with these. The unusual activity in the EEG was no longer present.
I noticed one strange thing. Although photosensitivity was clearly demonstrated in my case, the neurologist did not want to diagnose photosensitive epilepsy. I think he thought it would limit my lifestyle by making me feel paranoid about flashing lights. Consequently, I am just diagnosed with epilepsy.
For months after the seizures I noticed all sorts of warning signs which made me feel as if I might have another seizures. I saw flashing lights, couldn't recognise people, got confused when things moved fast or when there were rows of similar things in my line of sight.
My driving license was taken away and my confidence ruined. I couldn't even walk past railings in the sunshine.
What helped my symptoms initally before I was to see my neurologist for a prescription was dark sunglasses, preferebly wrap-around and polarised. I wore them all them time. I work in IT at a computer and had to explain many times to colleagues why I was wearing them. I avoided all shops and brightly lit environments and felt better. If I was starting to get visually tired at the end of the day, I'd just sit the last 1/2 hour with my headphones on (no music) and cover my eyes and put my head on the desk.
By the time I got to see my neurologist I had decided not to take any medication if he'd go along with that, I was anxious to avoid the side effects, I needed to be sharp for my work. He was not too happy with this approach but agreed, as long as I didn't have another seizure.
No more seizures occurred in the following six months and I began to come out of the glasses sometimes. I was pretty tired by now of the sunglasses ruling the way I looked all the time and the fear of more seizures so I asked the neurologist if he'd consider prescribing the anti-convulsants for me. He replied that I had gone several months without medication and now he'd rather I didn't take it.
It's now four years later and I haven't had any more seizures. I refuse to go to nightclubs or drink more than a little. If you find me in a supermarket I'll be speed shopping in dark wrap-around shades. I'm sure people think it's an ill-advised fashion statement.
Other than this I feel normal again most of the time. I have my driving licence back.
What some of you said further up about not understanding your symptoms and being confused applied to me for a long time. You do have to be firm and strong explaining your limitations to your friends and family because they can't see this disability from the outside.
Good luck to you all with this condition.
James May, Coventry
My sister is 16 and has been having "fits" for 3years now, the doctors have always said it was stress in which we disagree. We worked out that it is Photosensitive Epilepsy, she has seizures on buses, in college and in bed. When the lights are switched on really quickly she stares into space for a couple of minutes and faints in which she shakes horrendously from 2minutes up to 30minutes. After the fit she is really tired and has to go to bed to sleep for a very long time because she is so tired after it. She is on the highest medication and is continuing to have them. Why is she so tired? Why does she fit?
I've been getting dizzy spells on and off since I was 14 (currently 22), which have been pretty much undiagnosed. Went through labrynthitus, to Meniere's, to a type of epilepsy, to "dunno you'll just have to re-train your brain to think it's normal", all by different doctors (I've moved around a lot, and medical notes weren't passed on). All tests seemed to be normal (had most tests aged 15 - clear MRI, etc) Haven't seen one for a while now, but am thinking maybe I should... I don't know when it started (whereabouts in the cycle of doctors) but I find that these spells can be triggered a lot of the time by flashing lights (strobes are obviously worst but can be relatively slow ones too like on vehicles or bike lights or whatever - the greater the contrast between light and the environment the more likely I'll be affected...), sunlight flickering through trees (or just bright light in general), and lately I've noticed that walking up/down escalators can set me off a bit (not enough to stop what I'm doing, but have to lean heavily against the side to support myself as I walk), with those little stripes... Video games make me feel sick and headachy =( TV is ok in general, it's just if any scenes with flashing lights crop up...
I think I've been reacting worse but less often, if that makes sense. Worse in that I never used to pass out or anything, just be pretty dizzy (lightheaded and unsteady) for a while but now my head seems to swim a lot more and I often end up getting weak enough that I collapse to the floor - not sure whether I actually black out or not but certainly get very close!! It takes a little while to get back to myself again afterwards. But as I said, as the frequency of attacks seems to have died down a lot (possibly as I'm avoiding a lot of the triggers?), I'm reluctant to go to the docs about it. Unless anyone thinks I should? I mean, I haven't really come across anywhere that says dizziness could be epilepsy... but it certainly seems photosensitive! =S Another trigger seems to be exercise (again related to things moving quickly? I try to make sure I drink/ eat plenty so as to avoid dehydration etc...)
Any advice would be greatly appreciated!
Becky, I am fairly similar to your sister in the fact that I have photosensitive epilepsy and I am 16 years old. I too am always extremely tired after I have a fit, which my doctor explained loosely in the following terms. As we go about our normal lifes, electrical impulses are constantly being transmitted to different and seperate parts of our brains. During any type of seizure, these electrical impulses go haywire causing loss of bodily control both by the brain and by concious thought. After "waking up" I often fall asleep for 12-14 hours after, and if I don't I become extremely confused and disorientated. The simplest way I have had it explained to me is that "my brain needs to go to sleep so that it can recuperate".
A bit of advice for anyone out there that's been diagnosed with any kind of epilepsy:- if you don't believe you really have it, you're kidding yourself. For the last 6 years of my diagnosis I've always felt that I just really didn't have to pay any attention to it or take my tablets and it would go away. Eh, can you say wrong? I've had two fits in the last month from not taking medication, and it just sucks. And it really hurts my tongue too, 'cause I always bite it.
Heh I'm pse as well since 13 years old and I've just turned 42.I've been on a couple of type of medication had most of my fits in the morning.I put a lot of it down also to when we are 'naturally' growing or changing. Anyway I was having stress and things in my life last year which caused a fit after 14yrs of no petit mals or grand mals I began to feel the symtoms you all have experience posted before.Yep I've had 30 yrs experience lif style.Anyway since I was in bupa I got to see a top neurologist and had a scan ,which came back negative, but I got these tablets which seem to have sorted both my epilepsy and headaches since they where very dibilitating at work. The drug is Topamax.At first it makes you feel sick most days so they give it to you in small amounts then increase the dose weekly. Now I feel much better.
All the avoidance thing with flashing light- well I keep half my eyelid down,all my close friends know what can happen.Something that noone has mentioned! I know at least 10 minutes before a Grand mal if I could have a fit.It is the sickness and what I call the 'missing' seconds my eyes do not see.It is like when I turn my head from the left to the right but if I have a petit mal inbetween doing it I do not remember what's in the middle.If the petit mal get more frequent then I know I have only a certain time to get to a safe place...
"I do not allow Epilepsy to control me, I am the one who controls it"
I'm 32 years old and I was diagnosed with PSE in 1984 when I was 7 years old. I'm heartsore that as reading everyones story, there is repeating occurance... lack of information, explaination and understanding in the NHS and with the general public. I suffered from this ignorance as in 1984, there actually wasn't much understanding of Epilepsy in general and had the consultant say to my parents, "get her to take the tablets and she'll be ok". There is a fundamental problem, if a person doesn't fully understand a problem, they will not neccessarily follow the advice. As a result, I didn't take my medication, no matter how hard my Mum tried to disguise them in food, I continued to have seizures, was severely bullied in school and lived in a very confusing world whislt growing up. It indeed took over 13 years before I fully accepted that I needed to take my medication daily. I am utterly disgusted to learn that whilst there has been amazing breakthroughs in the medical advancement of treating Epilepsy, basic communication hasn't improved and therefore ignorance, stigma and isolation still surrounds a highly common medical condition, for those who have it and for their family and friends.
I've had Tonic Clonic (Grand Mal) when younger and now have Complex Partial (Petit Mal). I've always been vocal to people that I have Epilepsy, what it is, how it affects me and the first aid which to give as I was luckily taught by a supportive family, that it is important to do so as primarily, it could save my life. As I've self-learnt more about the condition over the years (websites & documentries), by talking openly about epilepsy also helps breakdown the stigma surrounding it and erases the myths. Through doing so, I've also helped and supported friends who also have epilepsy, to understand it and to learn not to be afraid of it.
My personal attitude to Epilepsy is a positive one. Yes, I've had to increase my personal awareness to my reactions to my siezures, light and make many adjustments in my life to control them however throughout it all, I have never allowed it to prevent me from enjoying life, i.e. I do not allow epilepsy to control me, I am the one who controls it!!! I have a friend who has Tonic Clonic Epilepsy, he was letting it rule his life and he never really talked about it to anyone until I discussed epilepsy openly down the pub one night. Since talking to him, he's now travelling about America, living life even though his epilepsy isn't fully under control and I am immensely proud of him for doing so.
When I have encountered ignorance and lack of knowledge, I set about and attempt to change it. Unfortunately people will not fully understand Epilepsy unless they have it, so what we with Epilepsy can do, is increase their knowledge and awareness of it! :o) If people with Epilepsy do not talk about it, the ignorance will remain, it is that simple. It is not just down to Dr's, it's also down to us too. I am very open and firm with friends and colleagues about my condition and what measures I have in place to control it, if after talking to them, they do not respect or cannot empathise, they aren't true friends! Also if they upset you through their inability to empathise or respect you, then tell them as you're feelings are important!!
This website, along with NSE (National Society for Epilepsy) are fabulous for learning more about Epilepsy and for obtaining support, not just for yourself but for family and friends too.
I'm proud to say that I've controlled my Complex Partial PSE and not had a seizure for over 10 years. I have also been driving for over 9 years. :o) Some of the basic adjustments to help my PSE have been:
- Take my medication, NEVER skip it.
- Stay hydrated!! very important if you have PSE
- Eat healthy and in regular time frames, do not go for long periods without food.
- SUNGLASSES!! I have about 5 pairs of various shading and will pop them on, even if the sun isn't fully out! i.e. if the sky is too bright & my eyes start to feel aggraviated or sore, even when it is cloudy, I will wear my glasses - what other people think does NOT count to me, my health does!
- Avoid strobe lighting. I will contact and complain to cinemas and television companies if they don't state about strobes in films. It is important as it improves your life by doing so!
- Drink alcohol in the right levels and do not mix alcoholic drinks.
- Ensure I get enough sleep during the night, sleep deprevation isn't good.
- Stress levels are kept in check and regular relaxation helps.
- Dim down computer screens or TV's if too bright when using / watching and take regular breaks.
- Reduce using computer games, though I've found the Wii to be okay as the graphics are more basic than the others.
Everyone's seizures are unique to them and amongst my advice to you all is to "tune" into your body and learn to understand it's reactions (even the tinest) to your epilepsy / light. Above all, it is not something to be frightened of, it is a condition and it can be controlled by working with it, not against it. In time, all the adjustments will become second nature to you.
Talk, talk, talk and keep talking about Epilepsy / PSE!! You are NOT alone and you will realise this as you become more open about it! To raise awareness of PSE / Epilepsy, we are key in doing so!
Big hugs and love to you all my fellow PSEs! :o)
Kris xxx
Does anyone else have problems with fluorescent strip lighting in heavily-lit offices?
I'd also recommend anyone with photosensitive epilepsy to do a Google search using the search terms "Zeiss Z1 epilepsy" to find out more about these dark blue lenses that work by screening out part of the light spectrum and can help people who are photosensitive and pattern sensitive.
Kate
thank you so much for your suggestions to minimize seizure frequency. i am 49 and recently have experienced five seizures that fit the differential diagnosis of transient epileptic amnesia (rare form of epilepsy). i was wondering how best to work on a computer since i believe there might be a light component to my seizures - perhaps increase the text size and crank the brightness down.
My daughter has been diagnosed with photosensitive epilepsy today. She is 19 and in full time employment in a hospital. At the age of 15 she has a seizure and passed out, spent one night in hospital and was told "just one of those things and everything should be OK". She now goes out clubbing and over the last few months has experienced some "weird feelings" when looking at flashing lights in clubs etc. She has not passed out since she was 15 and she says she just feels odd and is scared of what "may" happen so turns away, sits down quickly and drinks water to calm herself down. Her problem is that the consultant today told her she may not be able to drive any more and to inform the DVLA of the condition. We did this and the DVLA say it is up to the doctor and the doctor says it should be the DVLA who should make the decision. She started her medication today (Lamotrigine tablets). If anyone out there can help me with regard to driving licence etc. I would be very helpful. My daughter is extremely distressed at losing her independence even if it is for only a year whereby the situation would be reveiwed.
HELP!!!!!
i was at a rave when i had a seizure , i collapsed and shook my arm and legs while chocking and byting on my tongue. eversince when i drive by trees and the sun comes from the side i have 2 turn away from the trees and sun. in trains and busses 2, because it has thesame effect on me as a stroboscoop.
i really dont have concerns but whan that happens i begin shaking and it feels like my stomach turns around.
i get def and suddenly tunnelvision occurs., when that happens i feel very scared . so i really think i need 2 see some one about this.
i live in holland can anyone help me find an instition or so which can help me? tnx
I have fallen over three times in the last year and each time experience a weird kind of slowing down of everything around me. The last couple of times i've noticed a flushing up in my face and getting hot. The second fall was on a treadmill and I felt quite disorientated being on a moving surface. But I realise that I've had problems for years with lights. Driving at night if it's raining I end up feeling sick and very tired, watching films with any really quick or shaky frames I get sick and can't watch, causes a head ache too. I get travel sick very quickly and have suffered labrynthitis on and off over the years too.
After the hot flush and falling over I get very pale, need to cry and just sleep for hours. I don't always fall over, and realise that i've been feeling this way on a off for a while now.
I am waiting for my neurology appointment. I obcviously don't want to be diagnosed with epilepsy and hope its something less serious as i couldn't afford to lose my driving license right now.
Thank you for all the comments left previously as it's helped to read other's experiences.
Lara
Lisa,
I'm currently studying in the UK, but I'm from the US. I was diagnosed when I was about 8 years old and am now almost 21. I never expected to have my driver's license and I still don't. It's still very frustrating to me, especially when I have to have my parents take me places (ie, my friends' apartments). However, my seizures have stabilized over the past few years and my neurologist says that if they become controlled enough that I no longer have any (fortunately I only have "brief eyelid-absense spells" as my neurologist put it), he sees no reason why I shouldn't be able to drive. As of now, I'm still without a license, but it doesn't bother me as much as it used to because although I know how the lack of independence feels, I also know that if I have a seizure while driving it's not just my life I'm endangering. Although I know she probably won't be happy with this I hope this helps your daughter.
God Bless,
Shannon
iv suffered with epilepsy & photosensitive epilepsy since i was 17 (20 yrs). i did get my drivin license back 4 a yr 8yrs ago then lost it again! before i got it back i was able to put up with my epilepsy. iv always told every1 iv got it & not ashamed. when i lost it again tho it was completely different!! my whole world has altered now, im very happily married to a soldier and live in germany but i suffer terribly with depression as my life has changed so much. everything i loved 2do when i met my husband i can no longer do! ride my motorbike, go clubbing, drink, flashing lights, smells, exercising allsorts now sets it off again! anyone who says dont let it rule your life is only kidding themselves, if you dont completely alter your life you'd always be passing out or fitting! its the lesser of two evils! iv tried every medication in every mixture over the years but still having them. my specialist here is now trying to get me into an epilepsy hospital to try to get it sorted at last in the new year! i also got no info wen diagnosed, only wot iv found out myself, i even got told it was panic attacks & taken off my meds which caused a grand mal & a miscarriage 14yrs ago! support & info would be a great help when u find these things out! hope newcomers to epilepsy have more luck than some of us obviously have!
Flicker rate (CFF: critical flicker frequency) of CFLs and other fluorescents trigger my temporal lobe complex partial seizures, along with flashing strobe, visual fire alarm, emergency vehicles and CRT monitor refresh rates of 60 hz and below. Above 100 hz I have no problems. I have altered consciousness, absence, staring, disorientation, wringing of hands, inability to stop talking or impulse control, and down hill from there. This was following hypoxic episode during surgery after exposure to neurotoxins, and co-existing chronic neuroborreliosis - all causing injury to the brain. The incandescent light bulb ban is causing severe accessibility issues. Alternative lighting needs to be on the radar screen as a universal design and accessibility issue. Persons with PSE, and other photosensitive disabilities to CFLs (lupus, xp, TBI, autism, migraines, PSE, and photosensitivity from medications) are being denied their civil rights because of the flicker frequency, abnormal chromatic color and UVA/UVB component of these lights.
Hi
I have only just found this site, so I am a little late in replying. You may have already done your investigating? I am 37 and started havng seizures when I was 8, I came off my medication at 19 (passed my test at 18) and spent many years driving and living life to the full, I had my daughter at 29 and whilst 3 months pregnant with my son (now 5) i had a seizure in a shop. I have spent at least half of the last 5 years without my licence and it is very hard. Infact it is a nightmare, but now being at the other end (at least for now?). You somehow manage (good friends and family oh and a good bus route? help. Lisa your daughter will manage, it is amazing how quickly a year goes (you can get a free bus pass too). The DVLA confirmed (in their literature) and to me even if you faint you are supposed to inform them, they then decide if you can drive. Your doctor is responsible for telling your daughter she should inform the DVLA, DVLA are responsible for everything else. Your daughter (as the sufferer?!?!) is responsible for talking to the DVLA and keeping them informed. Any kind of lapse of concentration can cause the loss of you licence, so you need to be careful when describing your symptons!?
I hope you daughter is coping well, I may still need to change my medication, so who knows what the future holds, I am just hoping 2010 is my year of getting side effects etc under control.
For anyone with epilepsy it can be a lonely place, however , having found this site maybe not as much as I thought?
Warmest wishes for 2010 to you and your family.
Jayne (a very reluctant and sometimes fed up epileptic)
hi, i wonder if anyone can help. i sufferred from petit mal when i was very young (cant remember when it started) until the age of about 14 when i was taken off medication and cleared after 5 yrs free of seizures at 19. i am 26 now and over the past 6 months have noticed mainly tv's and lights flickering as though they are being flicked on and off very quickly, it only lasts literally a second or so. also i have been zoning out a lot more than usual, as well as higher rate of eye movement. i have been to see my doctor who immediately refferred me to a neurologist because of my past history, so have since had my MRI and EEG and currently awaiting results. i am just wondering if these symptoms could mean my epilepsy has returned, as i was told by my doctor that it is not uncommon for re-occurrance. has anyone else experienced similar symptoms?
any help would be great, my job involves diving, and at the moment im kind of in a limbo as to whether i will be able to continue in my role or not, obviously i have not be diving since my referal as there are other things i can do in my job, but it would be good to know if i need to accept it or just keep wondering.
suzy
Hi hope everything is ok try not to worry too much as this may cause you to have a fit the doctors may just put you on a low dose of medication to prevent any fits occuring I have been on a low dose for a while just to prevent fits take care jane