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Photosensitive Epilepsy
Biology 202
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Photosensitive Epilepsy
Carly Cenedella
A 17-year-old girl falls to the floor. She was playing the video game Dark Warrior. Her father, who is a video game repairman, fears that she has been electrocuted. The girl has fanatically played one game after another for years, and nothing like this has happened before. She is rushed to the hospital where doctors determine that she has had an epileptic seizure. An unusual bright flashing sequence in the game seems to have set her off (1) .Two 13-year-old girls are playing Super Mario Brothers. When the pace of the action picks up in the third straight hour of their play, one girl starts to shake and, for three minutes, has nonstop epileptic seizures (1) .
Six hundred eighty five Japanese people ranging in age from five to fifty-eight suffer spasms, convulsions, vertigo, and breathing difficulty while watching a colorful cartoon program. Doctors determine that most were suffering from epileptic seizures induced by a flashing white light sequence during the show (2) .
In the United States, there are close to one million people with epilepsy-- about 1 in 200 people around the world have epilepsy. For most of those people, video game playing and watching television are not a risky activities. The flashing patterns of certain games and television shows trigger epileptic seizures in only 5% of epileptics (1) . Photosensitive epileptics have with a peak age of onset of 10-14 years, are mostly woman, and experience a decline in the photosensitivity after 25 years of age (3) .
In normal brain function millions of tiny electrical charges pass from nerve cells in the brain to all parts of the body. In patients with epilepsy, this normal pattern is interrupted sometimes by sudden and unusually intense bursts of electrical energy, which may briefly affect a person's consciousness, bodily movements, or sensation (4) . During a seizure, nerve cells in the brain fire electrical impulses at a rate of up to four times higher than normal. This causes a sort of electrical storm in the brain (5) . A pattern of repeated seizures is referred to as epilepsy (4) .
Seizures cause different physical effects depending on which parts of the brain are involved and how far the signals fan out. Some people have violent seizures that knock them to the floor unconscious and twitching. Others experience less severe seizures that may only blank them out for a few seconds or more. Some mild seizures pass so quickly that it seems the person is just daydreaming. But, when these "absences" happen hundreds of times a day, they can be debilitating. Often, people sense that something is about to happen to them right before a seizure. This feeling, called an "aura," makes them restless, irritable, or just vaguely uncomfortable. After a seizure, people often don't remember having the seizure (1) .
The likelihood of a seizure, as well as its type, in photosensitive individuals depends on the intensity, the contrast of the visual stimulus, and the specific frequency of flashing. Extensive EEG studies have shown that a flicker stimuli between 10 and 30 flashes per second induces the generalized epileptiform discharges and the clinical features characteristic of an epileptic seizure particularly well. Television, computer, and video game screens produce a 50 Hz flicker and a vibrating pattern at half the alternating-current frequency, or 25 flashes per second within the 10 to 30 flashes per second range. The vibrating pattern is only visible when sitting close to the television. Therefore, most television-induced seizures occur at viewing distances between 1.5 and two meters. 100 Hertz televisions cause a vibrating pattern of 50 flashes per second and do not induce seizures (3) .
Video game seizures and television-induced seizures occur in people who have heightened sensitivity to pulsing light. It is not uncommon for this so-called photosensitivity to run in families. Some drugs, like valproate, are helpful in reducing photosensitivity and preventing these seizures. Some people simply outgrow epilepsy or are able to evade seizures by avoiding the stimuli that provoke them (1) . Individuals predisposed to seizures may have an increased risk for having a seizure following stress, sleep deprivation, fatigue, insufficient food intake, or failure to take prescribed medications (4) .
Many questions arise for me when studying photosensitive epilepsy. Which area or areas of the brain are affected by the visual stimulus? It seems like the affects can be quite dispersed since the outcome can affect so many functions of the body. The person's muscles are affected. They cannot stand and often twitch. Memory is affected. The person cannot remember having the fit. The description of absences seems to suggest that alertness or wakefulness seem to be affected.
Also, what does a particular frequencies have to do with the signaling in the brain? It seems that a specific frequency, 10 to 30 flashes per second, aptly induce photosensitive seizures. Higher or lower frequencies don't have the same effect. What is it about that rate of stimulus input that affects the brain of photosensitive epileptics? Understanding the frequency effect has vast implications for understanding brain function. The rate of stimuli that a neuron or group of neuron can take in and why could tell a lot about the function of neurons in general. It must have something to do with timing-- perhaps the delay in the voltage-sensitivity in sodium ion channels plays a role.
The model that I am currently assuming in my study of epilepsy is what I call the trigger area dispersion theory. The epilepsy trigger area in the brain of photosensitive individuals is connected to the visual processing area of the brain and is sensitive to a trigger stimulus, which is a light display flashing between 10 and 30 time per second. When the trigger stimulus is presented to the photosensitive individual, the trigger area begins firing abnormally. This abnormal firing spreads to other areas of the brain. The functions served by all affected areas are compromised as the abnormal firing, the seizure, proceeds.
WWW Sources
1) The National Institutes of Health Homepage: Research in the News , written by Ruth Lew Guver2)Health Authorities Look into Link between TV and Seizures. Medical Industry Today. December 19, 1997.
3) Trenite, D.G.A. Video Game Epilepsy. The Lancet. October 22, 1994.
4) The National Institute of Neurological Disorders and Stroke: What is Epilepsy?
5) The National Institute of Neurological Disorders and Stroke: Epilepsy
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06/24/2005, from a Reader on the Web Yes. I work for a company that manufactures strobe lights and one of our customers was interested in how our lights will affect his employees with epilepsy. Now I have read up on photosensitive epilepsy and how most seizures result from strobes of 5-30 Hz, however our strobes run at about 60-75 fpm (flashes per minute). This makes me feel like our strobes are not a high risk. However, we also have 60-75 qfpm (quad flashes per minute) which is somewhat similar then to 240 fpm. Would these quad flash strobes affect those with photosensitive epilepsy in the same fashion as 4 or 5 Hz strobes? Thank you.
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| This paper reflects the research and thoughts of a student at the time the paper was written for a course at Bryn Mawr College. Like other materials on Serendip, it is not intended to be "authoritative" but rather to help others further develop their own explorations. Web links were active as of the time the paper was posted but are not updated. |
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Comments
Brief loss of consciousness
After much research on the internet, I think this site might prove to give me the answer I've been looking for. Here's what happened to me. First off, I'm a 42 Year old White male. I have been a power line worker for nearly 14 years and I'm used to working outside. I recently purchased a new pair of sunglasses (polarized). Last week I was working. It was around noon and a very sunny day. I was walking through a field (glasses on), and started to notice that my surroundings began to become blurry and fuzzy. It became even worse as I began to look up at the power lines to detect problems with the line (as the direct sunlight was right in my eyes). I immediately removed my glasses but by now my eyes were doing something very strange. I could see with my periferal vision but, everything I was trying to look at directly was blurred by what I can only describe as like a (rainbow prism).
I was starting to feel very disoriented and felt as though I could no longer walk straight. I made it back to the road and tried to make my way back down to where my co-workers were but I just kept getting dizzier and dizzier until I completely passed out right in the middle of the road!
The next thing I remember was being put into a truck and being questioned by my co-worker who found me and the company safety man. I was totally disoriented! I was able to answer certain questions like my name and occupation but, I couldn't answer where I was, the company name or even what day it was. They immediately took off for the hospital. After a few minutes in the truck, just as quickly as it came on, it went away and I began to feel completely back to normal! The Dr. in the E.R., after running some basic tests, said he thought is was a case of Vertigo. I think there's more to it but, I'm just not sure. I would be happy to listen to any suggestions anyone might have. Shane
Epilepsy- sunlight attraction
My 15yr old daughter was diagnosed with juvenile myoclonic epilepsy when she was 11. Over the past 1 1/2 years, I've noticed she has a strong attraction to the sun, especially if it's flickering through the trees, fences, blinds or anything similar. Her last seizure was around the end of 2012 until last week. She was coming back from a run with her teammates during softball practice. I was watching her as she was rounding the sidewalk making her way back to the dugout. All of a sudden she stopped turned around looked up at the sun and first her head starting making a circular motion as she was looking at the sun and then her body started making the same motion as if she was getting dizzy and she collapsed and had a full blown seizure. She hit her head so hard on the concrete, it bounced back up. Very scary stuff! I immediately went and purchased her some polarized sunglasses. She's so attracted to the flickering lights of the sun and it's become such a habit that she doesn't even realize she does it but it's totally noticeable to everyone around her. Have you had any more episodes? Unfortunately she doesn't know when she's about to have a seizure. It's very frustrating and scary.
Epilepsy: Sunlight Attraction
Our daughter is 24 yrs. old and diagnosed with Lennox-Gastaut Syndrome seizure disorder. She has been "light seeking" for years. Although our daughter is unable to communicate well, I have spoken to those who have experienced the same behavior, and have discussed it with neurologists. Looking at the light actually creates a type of seizure activity that produces a "euphoric" or pleasant sensation. We had our daughter connected to an EEG and reproduced a similar situation, and lo and behold, she was setting herself off with actual seizure activity! It's been very frustrating, she won't wear sunglasses. Some days are better than others.....
Re:Sunlight Attraction - Bonnie
Hi Bonnie, I understand your frustrations. We've experienced that for several years with our daughter. Polarized sunglasses do help but don't entirely stop them from waving. One thing that has stopped our daughter from waving, is Irlen lenses. Our daughter's had them for 16 months now. We hardly ever see her wave anymore. If she does, it's because she's outside for a long period of time with her sunglasses on. As long as she wears her Irlen lenses most of the day, she's fine. Her lenses are a combination of purple and gray. They do look like sunglasses because of the tint that she needs, but I can assure you it has made a world of difference for her and for us. She used to complain of headaches, but would not take Tylenol, she said they werern't real headaches. When she saw the Irlen diagnostician, that is when I finally understood so much about her behavior. When exposed to a fluorescent light, she became very tired, very quickly. She used to get agitated all the time. I think the light caused pressure behind her eyes, and these were the headaches she would complain about. I believe that the hand waving, all though doctors claim is an euphoric sensation, is the way their brain reacts to the light to avoid this pressure. Now that our daughter has these Irlen lenses, she has a lot more energy, she's much more outgoing and doesn't get agitated like she used to. These lenses are quite expensive, but they're worth every penny. Look at www.irlen.com for more information. I was skeptical to try them, but I'm so grateful that people have mentioned them on this site. It's made a world of a difference for our daughter. She's now 17. She may now be able to get her driver's license if she remains seizure free. Wishing you all the best with your daughter. I know it's harder, being that she's 24, you can't really tell her what to do, but hopefully she will listen to you or a friend. Best regards!
The hand waving in front of
The hand waving in front of the face is to induce a seizure. It's called "sunflower syndrome".
hand waving over the eyes
SUNFLOWER SYNDROME. Look Into It....
photosensitive seizure hand waving
I found a video of the head tilt, eye roll, hand waving tic.
http://www.youtube.com/watch?v=wVYTstTC1Wg&lc=SDi0C_lTYjcShzItuihkmorzbzJwhA2gD-Uy6tlBmY8&lch=email&feature=em-comment_received
Special sunglasses
I read with tears the other stories of children who seem to be bothered by the sun and bright lights, and yet go outside and on purpose look directly into the sun or inside at a bright light. My daughter also does the hand waving in front of eyes as she closes her eyes, and does this facing the sun or a very bright light.
She is now diagnosed with epilepsy, because while doing this, she had 2 grand mal seizures.
The neurologist will not address this hand waving habit, she only wants to address the grand mal seizures. For those who have a child who does the hand waving habit, you know it can be dibilitating.
I wonder if what she does (the hand waving) is an absence seizure brought about by her sensitivity to light. Maybe that could be her trigger.
Through my research for help, I read about a place that tests to see if different color spectra from the sun or lights is bothering a person. And then special glasses are worn to block out that specific color that is causing the person problems.
Helen Irlen discovered 20 years ago that filtering the different colors can benefit people with differing problems. Light sensitivity and seizures are two listed that I am interested in.
We plan to seek help from this place and hope it holds answers for us.
For those looking for testing and glasses:
Their phone number is 1-800-55-IRLEN. They are based out of CA, but have testing centers across the United States.
The best way to find out more about them is to get on their website www.irlen.com. It sounds amazing!
hand waving
My daughter is ten and has suffered from absence epilepsy since she was three. She looks at light, head back,
And flutters her eyes. Hundreds of times a day. About two years ago after a medication change, she started with
The hand waving. It is constant in bright light, especially sunlight. I am now trying medical marijuana and
Had an irlen screener come out for an exam. It was amazing but expensive. We now have two transparencies
That she puts on a page to help her read and we have an appt for the glasses. I will keep.you posted. I pray the help
daughters seizures
i was reading on this site and your comment caught my attention. my daughter had her first when she was 10 yrs old. but before that 2 summers before she started a sun light senstivity. she waves her hand in front of her eyes and forehead, eyes flutter back. we noticed that some of the last seizures she had this was happening. they are connected. we are trying CBD medical marijuana spray. it would be nice to talked to someone with the same experience. thanks, alicia
My daughter is now 16, but
My daughter is now 16, but she has been waiving her hand in front of her eyes in the Sunlight since she was 9. She eventually started to waive her hand in the house when she was near a light fixture, such as the dining room light. What I didn't realize is how much the fluorescent lights also bothered her. When we saw the diagnostician for the Irlen lenses, it was an eye opener for me. I understood so much more about what my daughter felt all these years after spending just over 2 hours with the diagnostician and her. My daughter used to complain of headaches, but she would say they are not "real headaches". What she was really referring to was pressure the fluorescent lights would cause her, and therefore making her tired, irritable and unable to make decisions. Since she has been wearing the Irlen lenses, she has not been complaining about these "headaches". She's not tired all the time either. Plus she stopped waiving. There are so many ways that these lenses have improved her life. I know they are expensive, but they are worth every penny you invest in them. I pray they will bring your daughter the same relief. It was an answer to our prayers. I'm very grateful to the parent who posted about the Irlen lenses on here. Otherwise, I would have never known.
Irlen Lenses - they work
Dear Concerned Mom,
Not sure if you ever did get these Irlen glasses for your child, but we got them for our daughter just over 2 months ago, and they made a huge difference. She has not waved at all since she's been wearing them. She did wave once the other day when she was near a window, but she didn't have them on.
I know they are expensive, but I can assure you that my husband and I are amazed that they have totally stopped her from waving her hand in front of her eyes. She used to complain about headaches, but she hasn't complained about one since she's been wearing the Irlen glasse.
If you haven't been able to get these glasse, I would urge you to do it as soon as possible. Your child will be feeling much better.
Take care!
Nancy
irlen glasses
Thanks!! I was wondering if the worked. How old is your.daughter? Does she wear them without.a problem?
Irlen lenses - yes they do work
My daughter has been wearing the Irlen lenses for 5 months now. She wears them everyday. She does take them off and put on her sunglasses when she goes outside, but even so, wearing them the majority of the time, she can still go outside with her sunglasses on and still not waive. I'm so happy that we were able to get these for her. It has changed so much for her and for us. We don't have to worry about her all the time like we used to. I'd recommend them to anyone who has light sensitivity. (photosensitive epilepsy)
Feeling like my brain is being reset
I am 23 years old but when I was 17 I had a seizure that followed a bout of food poisoning with moderately high fever, the day after I had participated in a physically exhausting sporting competition. I had a neurological work up wiu EEG and it was concluded that I was photosensitive to some wavelengths but no link was ever actually made between the seizure I had and any light provoking circumstances (I was in a moderately lit room with a fever so there are some muddying factors). However I have tried to relate the diagnosed photosensitivity to any experiences I had prior to knowing about it and one feeling keeps coming up. As a kid/teen I often remember riding passenger in our car on very sunny, summer day with the sun streaming through the leaves on the tress above the car. I remember looking up at the flickering, strong light and closing my eyes but still being able to feel the brightness through my closed lids. The only way I can describe the feeling is as if my brain sort of overloaded and reset. And this description was before I had any notion of what a seizure was. I never actually lost consciousness but it was such a strange sensation that I could only guess as photosensitivity to intense sunlight at a particular frequency. My question is what is actually happening in the brain during an experience such as this one without having a full seizure? A mini incapacitated state?
seizures
My daughter can't even go outside because her eyes automatically go to the sun and she will have a seizure. And she even wears sunglasses that are suppose to help and they don't. Does anyone know what causes it?
same problem with seizures
hi i believe your daughter might have the same problem as i do i have sufferd with epilepsy me whole life, no glasses work no hats work but it at least helps a tiny bit depending on the glasses and hat but you still end up with seizure activity,
before i can actually give you any accurate answers does she have to fully stay in the dark or does regular lights like cfls, 40wt bubls especially florencents bother her?
RE: same problem with seizures
Hi Justine,
Thank you for your response. My daughter doesn't have to be in the dark, but we have tried different light bulbs and it doesn't make a difference. It seems that if she is too close to the light fixture, she starts to waive her hand in front of her eyes. The grand mal's have been in good control in the last 9 months, but the waiving started again after they stopped manufacturing the medication that was helping her. When she's at the dinner table, we often will turn off the light above the table for her to stop waiving and turn on another light further in the kitchen.
It seems to be the intensity and the proximity of the light that triggers the hand waving in the house or at school. I've even seen her do it in stores too.
Any suggestions you may have that have worked for you would be greatly appreciated. Wishing you the best for 2013!
Nancy
Hand waving/light and sun sensitivity
My daughter has done the hand waving in front of her eyes/on forehead thing for at least 5 years. When outside, she will turn and face the sun and do this. When inside, overhead lights make her do this, as well.
She has had 2 grand mall seizures after doing her forehead habit in the sun.
We kept telling her neurologist that the hand waving and seizures were connected. She disagreed and told us to see a psychologist for her hand waving. We disagreed and did not do this.
Through the internet, we found "sunflower syndrome". It falls under photosensitive epilepsy. Look on the internet for some answers (most neurologists haven't heard of sunflower syndrome or won't address it). I wonder if your daughter has photosensitive epilepsy.
Through research on the internet, I found the Irlen Institute. They filter out offensive/bothersome wave lengths of light allowing the brain to function more normally and help it heal. This filtering will calm the brain and reduce stress on the central nervous system.
Based on this info, I asked our neurologist if we could test for this. She agreed. Our daughter had an EEG done. During the EEG they did the strobe light test (with eyes closed) for 5 seconds. Regular strobe light color caused immediate and definite spikes of seizure activity on the EEG monitor. Next they put a red colored disc in front of the strobe light and did the same thing. She got the same result of immediate and definite spikes of seizure activity on the EEG monitor. They also did yellow and orange, with the same results. Then they did blue, and after that green. Both the blue and green discs showed no seizure activity. It was normal!!
So if we get blue or green lenses, this should solve her light sensitivity issues! Dare we even hope that this could help or even solve her epilepsy????
We are going to contact the Irlen Institute and see if their colored lenses could help us.
Please think about having your child tested. We would NEVER have known if and what colors were triggering her!!!! For the first time, I feel empowered regarding my daughters condition!!
Re: Hand waving/light and sun sensitivity
Thank you for letting me know about the Irlen Institute. We did the screening process in November, not very convinced on whether it would help my daughter, we still went ahead and met with the diagnostician beginning of December. I never understood how much the lights bothered my daughter until the diagnostician tried on several different color combinations for my daughter to try, and she had to explain how it made her feel.
Some changed the colour of things, some stressed her, but most of all she had a lamp with a CFL light bulb close to her and in no time, did my daughter feel energetic to feeling exhausted, stressed and unable to make a decision. The diagnostic process took just over 2 hours to do. I realized in those 2 hours that the headaches that she would complain about at times, was pressure behind the eyes cause by the light and wonder if that is the reason why she would wave her hand in front of her eyes to remove that pressure. I remember as a toddler, she hated when we went into a mall and would have a fit and scream. I wonder now if she was very sensitive to the light from a young age and I didn't pick up on it. I remember that store had very bright lights, so I always waited for my husband to be home and go by myself.
Any ways, we now have the Irlen lenses, and she has been wearing them for the past week and even though she said she has waved a few times, I have not seen her wave at all, so I'm hoping this is the answer we've been waiting for as it will be 7 years this spring since the hand waving started.
I would recommend the Irlen lenses for anyone who suffers from this. Even though I was skeptical, I saw other benefits it would help reduce headaches and the stress the light is causing her. She has a combination of light purple and gray lenses, but everyone is different.
Thanks again for letting me know about these lenses! I finally feel hope for her to be able to eventually drive and since she will be 16 this year, it's a great relief. Don't hesitate to get the Irlen lenses.
Irlen lenses definetely make a difference
Hi Justine and all those who suffer or have a child who suffers from photosensitive epilepsy,
I just want to let you all know that my daughter's been wearing her Irlen lenses for just over 2 months now, and Wow! What a difference, she has not been waiving her hand in front of her eyes like she had been for years when she was in the sun or close to lights. She has not been complaining of headaches like she did before. She also has more energy. Before she had the Irlen lenses, the lights bothered her so much that it tired her out.
I would definitely recommend these lenses to anyone who could benefit from them. It has changed for her, but also for us, as we can now feel confident that she can go outside and cross the road without waving her hand. I would never let her go to the corner store before by herself of fear that she would stop in the middle of the road and wave her hand in front of her eyes, fear that some driver would hit her because they wouldn't be able to stop on time. (Our street is quite busy and people drive faster than they should)
Hoping everyone will find a solution to their photosensitivity.
I can finally say that I feel a lot better now that my daughter has these Irlen lenses. It was worth all the money we spent on them. It went above my expectations in helping her.
Have a great day!
Nancy
Irlen Institute
I am so glad the Ireln Institute turned out to be the answer! And I'm thrilled the glasses have worked for her!
I will never understand why neurologists don't know about this. I get tired of their answer being "more drugs".
Why is it that I am the one who researched this and presented it to my neurologist? Why is it that I am the one who found out that certain wavelengths could be causing this?
At my last appointment, our neurologist said that if I find out about glasses for this type of epilepsy, to let her know so that if she has other patients who have this, she can let them know.
Yes, we will be switching neurologists this year!
Maybe it's because photosensitive epilepsy is not very common that doctors don't take the time to research about it?
By the way, my daughter is also 16 and so I understand the issue of driving with photosensitive epilepsy!
Again, so thankful you found the answer. It brought me to tears.
Irlen glasses
Hi Justine,
Thank you for your kind words. I did mention these glasses to my daughter's neurologist when we went the last time, and she was basically questioning them, almost trying to say that this was ridiculous and there was no evidence that these work. I can see it with my own eyes that they work. My husband and I have gain confidence that she will be able to do things on her own, that we wouldn't let her do before cause we feared for her safety if she was out and about on her own.
After this last appointment, I was very disappointed with our neurologist. They are there to help people, not to make them feel worse. She was also trying to push for more medication. My daughter is already taking three different medications. I also think that's all they are interested in after this appointment, is to push for pills, that's how they make their money.
There was an article not long ago in one of the Toronto Newspapers about a woman with photosensitive epilepsy, and flashing Christmas lights in stores would bother her, and she would sometimes have a seizure in the store. In that article they mentioned how many people in Toronto alone had this type of epilepsy, and I was quite surprise. It was a lot of people. I think that it is more common than we realize. http://www.thestar.com/news/gta/2013/11/29/holiday_lights_trigger_epileptic_seizures_for_toronto_woman.html
I wish there was a way for us two to connect outside of this to talk more.
I'm forever grateful to you to have told me about these glasses. I think if we had known about these years ago, she may had never had to be on medication in the first place. Hopefully over time, we will be able to take her off of them.
Have a great weekend!
Nancy
Justine and Nancy, Are either
Justine and Nancy,
Are either of you connected by facebook? There is a support/info group on there called Sunflower Syndrome. There isn't as much info as I would like on there, but it's a place to connect with people who have children who have this.
When I found that facebook page, I cried!
Sunflower Syndrome on FB
Thank you! I've added it to my likes on Facebook this way I can follow it.
Have a great week!
Nancy
is there any way to talk
is there any way to talk outside of this it would be simpler to understand and talk
sorry to hear that the
sorry to hear that the medicine was cancelled hope shes doing well, i'm pharmacoresistant so no seizure medicine will work for me but i do know what you talking about with the kitchen lights and store lights its the brightness of them so i have found a cfl black light bulb that works for me so you dont end up having a seizure, depends on the extent of your epilepsy to light the cfls can give you a problem if your already having a seizure problem. i have been recently trying medical cannabis cooking with it and baking with it so if i end up having a seizure problem i just take that and go on with my day it will calm it or just stop the seizure.
so far the medical cannabis has shown the most promise. I'm able to eat in the kitchen with out any problems go into stores for a while with no problem and even outside on days when the sun is out for a little while without having seizure activity
hope your all doing alright my prayers are with you Justine
photosensitivity
Have you heard of Jeavon's Syndrome? It is "eyelid myoclonia with absences" or rolling-twitching eyes and losing consciousness for a second or two. It can be diagnosed with a video EEG. I have been searching for information to help my son. Jeavon's does not describe my son's behavior, but I wondered if it would help you.
At seven years of age, my son began tilting his head and rolling his eyes when exposed to sunlight. Within months it progressed to an head-tilt, eye-roll, behavior where he waves his hands in front of his eyes. He does this nearly constantly in the sun. I have found several people with the same issue. No answers though, sorry. Again, my son is not an example of someone with Jeavon's but I described his behavior in case you experience a similar problem. I'm still looking for help.
-Atticus
Irlen Institute
I don't know if you found anything to help your son but my granddaughter was helped by the Irlen Institute and she had the same problem as your son. Please try them as I truly believe they can help you.
Photosensitive Epilepsy
To Atticus:
I read your post regarding your son's behavior in the sun. My daughter has been having the same trouble since she was 4 years old, she is now 12. I first noticed it when she began waving her hand in front of her eyes when riding in the car. However, she doesn't do this anymore, but she still does the head-tilt, eye-roll, and trembling constantly when she is in the sun (even with dark sunglasses). The doctors don't seem to have any answers and just keep trying different medications that DON'T WORK. Please let me know if you ever get any answers.
This may show up twice but
This may show up twice but just in case it doesn't here is the reply I sent earlier to another mother having the same issues:
My granddaughter has photosensitive and pattern sensitive epilepsy. The glasses you need are the ones that change the light spectrum--in other words colors are changed. We found this by accident when we bought her a pair of goggles for the pool. When you look through them colors are changed. With them on she could look directly at the sun with no problems whatsoever. The problem is that there are no glasses available in the U.S. for this. I found a place in Europe but the glasses were extremely expensive. The visor on caps helps her as well. I don't see why an optometrist couldn't put a light spectrum changing filter into a pair of glasses--a child can't walk around with goggles all the time. By the way, the goggles were only $18 compared with over a hundred for the glasses from Europe!! Perhaps we should barage the Epilepsy Foundation with requests for such glasses. The problem is only 5% of all epilepsy cases are photosensitive (and only 3% are pattern sensitive!!). I hope this info helps you in helping your child! Marie
Glasses
Please look into the Irlen Institute. Their number is 1-800-55-IRLEN.
They can test to see which light spectrum (actually they are wavelengths) are bothersome for each individual. They can get glasses or contacts to block out that color/wavelength.
This is the answer we have been looking for!!
Hand waving
Hi Marie,
Is your granddaughter only waving when she's outside in the sun or does it happen inside with the lights on? My daughter's been waiving inside the house when the lights are close to her, such as the light in her room and at the dining table. The one medication she was taking was really helping, she was practically not waiving at all anymore, and then they stopped manufacuring it. She's now taking the Brand name, but it doesn't help at all with the hand waving. Anyone else experiencing this with the lights inside the house? Any comments would be appreciated. Thanks! Nancy
light
My son used to do the hand waving in the house with artificial lights. I let him sleep in most mornings until he naturally wakes up. It didn't get rid of the tic with natural light, but he doesn't do the hand waving with artificial lights anymore. Extra sleep may have helped.
He still waves his hand in sunlight both outdoors and indoors through windows. This is what did NOT help: using incandescent, using blue-block filters, using UVA/UVB filters. Whenever possible, I hang a curtain in the car window or house windows or I insist he move to a room without sunlight streaming in.
There must be some filter, though. Marie found one with the blue goggles. I also find that my son doesn't do this at all on overcast days. Even if there is enough sunlight coming through the clouds to cast shadows, certain cloud cover eliminates his tic entirely until the clouds roll away.
Look up sunflower syndrome,
Look up sunflower syndrome, which falls under photosensitive epilepsy.
Also, look up Irlen Institute. They make colored lenses.
Waving hands
My granddaughter started waving her hands in the house as light filtered through the blinds. Fluorescent lights cause her to have seizures...as do the new light bulbs that the country is switching to. We are hoarding incandescent bulbs! A Neurosurgeon explained to us that the sensation caused by the "strobing" of the hand against light causes a very pleasurable sensation in her brain. We are able to help her stop when we see this happening. Medications have not stopped any of her seizures--pattern or photosensitive. She had a vagal nerve stimulator placed and they are still adjusting it, however, though it helps lessen the time period of a seizure sometimes, she still has seizures. Sometimes the magnet will stop them, sometimes not. The spectrum changing lenses help both inside and out...just wish they would figure this out and manufacture them here!
photosensitivity
Has the doctor found anything that would be causing your son to do this?
My daughter has also been doing this and I was wondering what it could be. I am currently waiting for a neurologist to call me with an MRI and EEG appointment.
Update
My daughter was given an EEG with no luck, as the strobe lights did not cause any seizures. Next week she is having an ambulatory EEG. She gets to wear the equipment home for 24 hours! Hopefully the neurologist will be able to see something on this EEG since I will be taking her out in the sun often.
I have not been able to find any sunglasses to help her. She seems to have less incidents when she wears a ballcap low on her head, covering her eyes. Unfortunately, I cannot find anything that stops them.
Krpatterson, I was wondering
Krpatterson,
I was wondering what you found out from the ambulatory EEG? I have an 8 year old daughter that is experiencing similar traits. Is your doctor leaning toward anything in particular? Ours is saying reflex issues.
My daughter had many episodes
My daughter had many episodes during the ambulatory EEG. The doctor's office called and said that there were numerous abnormalities on the EEG; however, they are not sure if they are actual seizures. The neurologist highly recommends that I keep her from having these episodes. They will not give me anymore information until the follow-up appointment at the end of August.
I will let you know at the end of August.
None
My granddaughter has photosensitive and pattern sensitive epilepsy. The glasses you need are the ones that change the light spectrum--in other words colors are changed. We found this by accident when we bought her a pair of goggles for the pool. When you look through them colors are changed. With them on she could look directly at the sun with no problems whatsoever. The problem is that there are no glasses available in the U.S. for this. I found a place in Europe but the glasses were extremely expensive. The visor on caps helps her as well. I don't see why an optometrist couldn't put a light spectrum changing filter into a pair of glasses--a child can't walk around with goggles all the time. By the way, the goggles were only $18 compared with over a hundred for the glasses from Europe!! Perhaps we should barage the Epilepsy Foundation with requests for such glasses. The problem is only 5% of all epilepsy cases are photosensitive (and only 3% are pattern sensitive!!). I hope this info helps you in helping your child! Marie
Look up Irlen Institute.
Look up Irlen Institute. They make colored lenses. It works!
I took my son to a pediatric
I took my son to a pediatric neurologist and was told that this was just a habit and not to worry about it. I have contacted other families with this problem and most have received a diagnosis of photosensitive epilepsy.
I have tried sunglasses with UVA and UVB protective lenses. I have tried tinting my car windows. I know of one child who took Epilem. None of these have been successful in reducing the hand-wave behavior.
I have not tried the Maui Jims sunglasses suggested by Nancy on this forum.
Marie, from this forum, said, "The doctors were even amazed when a blue filter on EEG did not trigger seizure responses." I am working on a second opinion for my son and I would like to our new doctor to try the blue filter.
Thank you for your input. Please keep me posted on your progress.
Hand waving - Epilepsy or Habit?
In response to Atticus's comment, it's funny you say you were told it's just a "Habit" that
your son is doing the hand waving movement. After trying different medications, and never fully be able to
control this "behaviour", they told us the same thing. Willing to try anything, we went to see a psychiatrist as
suggested by my daughter's neurologist. Then for no reason, she started having the grand mal seizures again.
At one point she had 3 big seizures within 5 weeks. Each time bruising her left eye when falling to the ground.
After the last big seizure, they decided to try another medication, Topriamate. Amazingly, the hand waving is now
almost nil. May have seen it happen 2-3 times in a week where she could do it several times in a day before.
I believe this medication as almost 100% cut down on my daughter's hand waving. Not saying that this medication would
work for your son as everyone is different, but it may be worth talking about it with his neurologist.
We seen the psychiatrist about a week after she started this new medication, and he was very pleased with the results of topriamate, which is a seizure medication, that he saw no need to see my daughter again unless things got worse. He never prescribed any medication to try and control the Hand waving behaviour.
We're hoping that now that the hand waving is practically nil, that she will not have any more big seizures. Only time will tell.
Take care and wishing you all the best! Let me know how things go. Sincerely Nancy
Look up Sunflower syndrome,
Look up Sunflower syndrome, which falls under photosensitive epilepsy.
Also, the Irlen Institute makes color tinted glasses.
During my daughter's EEG, during the strobe light test, they also tested 5 different colors. We found that the red, orange and yellow lights all showed seizure activity/spikes on the EEG monitor, but the blue and green strobe lights showed normal EEG activity.
Seizures in the sun
My granddaughter has the same problem...she used to even "strobe" the sun by rapidly moving her fingers in front of her eyes. By accident we noticed one day that when she put on her swim goggles she did not have the same reaction to the sun...in fact, no reaction. The goggles were the kind that change colors when you look through them...so that red is not red, etc. In vain we have tried to find glasses that will change the light spectrum in the same way. The doctors were even amazed when a blue filter on EEG did not trigger seizure responses. Yet, they have been unable to help us find these glasses. Guess my point to you is that these goggles work...you have to look through them and make sure they change colors (the lenses will be blue). It has helped my granddaugher to swim and trampoline outside without seizures. Just wish we could find SOMEONE who makes the color changing lenses for regular glasses!! Hope this helps you....
My daughter has done the hand
My daughter has done the hand waving in front of her eyes/on forehead thing for at least 5 years. When outside, she will turn and face the sun and do this. When inside, overhead lights make her do this, as well.
She has had 2 grand mall seizures after doing her forehead habit in the sun.
We kept telling her neurologist that the hand waving and seizures were connected. She disagreed and told us to see a psychologist for her hand waving. We disagreed and did not do this.
Through the internet, we found "sunflower syndrome". It falls under photosensitive epilepsy. Look on the internet for some answers (most neurologists haven't heard of sunflower syndrome or won't address it). I wonder if your daughter has photosensitive epilepsy.
Through research on the internet, I found the Irlen Institute. They filter out offensive/bothersome wave lengths of light allowing the brain to function more normally and help it heal. This filtering will calm the brain and reduce stress on the central nervous system.
Based on this info, I asked our neurologist if we could test for this. She agreed. Our daughter had an EEG done. During the EEG they did the strobe light test (with eyes closed) for 5 seconds. Regular strobe light color caused immediate and definite spikes of seizure activity on the EEG monitor. Next they put a red colored disc in front of the strobe light and did the same thing. She got the same result of immediate and definite spikes of seizure activity on the EEG monitor. They also did yellow and orange, with the same results. Then they did blue, and after that green. Both the blue and green discs showed no seizure activity. It was normal!!
So if we get blue or green lenses, this should solve her light sensitivity issues! Dare we even hope that this could help or even solve her epilepsy????
We are going to contact the Irlen Institute and see if their colored lenses could help us.
I think this is the glasses you have been searching for!
photosensitivity
I would like to know more about your granddaughter and her progress.
How old was she when she began rapidly moving her fingers in front of her eyes?
What kind of seizures does she have when she does this?
Do the goggles completely eliminate the hand waving?
My son experiences the same issue.
I appreciate any information you are willing to share about your granddaughters condition.
My daughter has done the hand
My daughter has done the hand waving in front of her eyes/on forehead thing for at least 5 years. When outside, she will turn and face the sun and do this. When inside, overhead lights make her do this, as well.
She has had 2 grand mall seizures after doing her forehead habit in the sun.
We kept telling her neurologist that the hand waving and seizures were connected. She disagreed and told us to see a psychologist for her hand waving. We disagreed and did not do this.
Through the internet, we found "sunflower syndrome". It falls under photosensitive epilepsy. Look on the internet for some answers (most neurologists haven't heard of sunflower syndrome or won't address it). I wonder if your daughter has photosensitive epilepsy.
Through research on the internet, I found the Irlen Institute. They filter out offensive/bothersome wave lengths of light allowing the brain to function more normally and help it heal. This filtering will calm the brain and reduce stress on the central nervous system.
Based on this info, I asked our neurologist if we could test for this. She agreed. Our daughter had an EEG done. During the EEG they did the strobe light test (with eyes closed) for 5 seconds. Regular strobe light color caused immediate and definite spikes of seizure activity on the EEG monitor. Next they put a red colored disc in front of the strobe light and did the same thing. She got the same result of immediate and definite spikes of seizure activity on the EEG monitor. They also did yellow and orange, with the same results. Then they did blue, and after that green. Both the blue and green discs showed no seizure activity. It was normal!!
So if we get blue or green lenses, this should solve her light sensitivity issues! Dare we even hope that this could help or even solve her epilepsy????
We are going to contact the Irlen Institute and see if their colored lenses could help us.
Please think about having your child tested. We would NEVER have known if and what colors were triggering her!!!! For the first time, I feel empowered regarding my daughters condition!!
sunglasses
hi, my daughter has been prescribed Maui Jim's glasses. They are polarized sunglasses, UVA, UVB and Uvc protective lenses. The original ones were brown lenses, but now that she has the black lenses,she find it helps even more. Only now, she's also waving her hand in front of her eyes inside the house which we don't understand.