Possible photosensitive seizures?

[stardustdragon]

For the past few years I've noticed I have these occasional...things that happen when I'm exposed to rapidly flashing lights. It doesn't always affect me when I'm on the internet and see something of that nature, but it does make me feel a little sick and have to click away.

Anyway, I first noticed it while in highschool. I was walking through the halls on our outdoor campus, and the rails of the second storey had lots of large holes as part of the design. I've always been a fast walker, and the sunlight flashed through it rapidly enough that I physically stopped moving for a few seconds, my vision went black, and I couldn't move. Then I snapped back out of it and kept walking, but I was really freaked out.

Nowadays, since I graduated a couple of years ago, I notice it while I'm in cars, too. It only happens when the sun is low enough in the sky that, while driving, it flickers through the trees. I've learned to put down my visor or put up my hand to shield my eyes from it, but it has happened on multiple occasions.

I'm now on a new medication that raises my risk of seizure (Bupropion) and I'm concerned. It hasn't happened in a couple of months, but I neglected to tell my doctor about it before she prescribed the drug because it can be so few and far between that I just sort of forgot.

I'm worried I won't be able to drive if I'm diagnosed with some form of epilepsy, because I'm very independant, but I guess that's the least of my worries.

Anyways, can anyone tell me if they've experienced anything like this before?

 

[Pinkattitude]

Hi Stardustdragon, welcome to C.W.E.
Since I just had one like less than an hour ago, I can tell you that photosensitive seizures are real. The one I just had is because we were driving west on a busy highway with the sun glaring off the oncoming cars' windshields. This is part of the pattern that happened when my seizures came back as menopause began.

I do play video games, and I very much avoid any area of the game that has bright flickering lights. For me, it's a few things that cause my seizures, not usually just one. So just seeing flickering lights doesn't usually start a seizure unless I'm also either tired or emotionally stressed.

Today I had forgotten my good sun glasses that cut the glare, so I was particularly vulnerable - plus I've had a very emotionally stressful work week.

Everybody's different. At first, I had to avoid driving highways (because in highway driving I tend to get too relaxed, and my seizures came back as ones that occur as I'm falling asleep), and I avoided driving at night (for the same reason). I finally had to stop all together because they started happening during the day, too.

Laws are different in each state, so you may want to check your local DMV website for the local law. I drove for years in many different states with a diagnosis of epilepsy because my seizures were controlled with medication.

My sense (and I could be totally wrong) is that most neurologists only report it if you're having seizures regularly - or you only have them when driving.

I think in my state, you can drive again after being seizure free for 2 years. Mine were not reported to the DMV, but I won't drive because it's a risk I'm just not willing to take with my life or anyone else's! I won't drive until I'm seizure free for a Long Long time, if ever again. I'm mad I lost that freedom, but it's not going to make me risk killing someone.

Have you had an EEG done with strobe lights? That's a test that might determine if it's the flickering lights that are doing it or something else.

When I was in college, strobe lights at parties used to just make me feel sort of high (no, I wasn't smoking anything back then). But I don't recall having any seizures while they were going. Things change a lot in 40 years, and now I won't stay in a room with strobes, or I just close my eyes!

 

[stardustdragon]

Thanks for replying, and I hope you're doing well considering your first sentence.

I play a lot of video games as well, but I've never had a problem with them. I can't really say whether or not they've been caused on days where I'm overtired or not, because it's been a few months without anything, and I'd never thought to document them before.

I'd hate to lose my license because I'm 20 and I rely heavily on being able to drive myself (or others). Maybe since it's sporadic it can be controlled.

I've never had an EEG done, but I'm going to be calling my primary on Monday to see what I need to do, especially since this new prescription increases the risk of seizure (at least, according to the medication guide that came with it).

I refuse to go to clubs or anything like that with flashing lights, because even if they don't cause a seizure, I do get headaches from them.

I guess it's kind of a waiting game now while I wait for Monday.

This may be the inexperienced youngin in me, but I'm absolutely terrified that I do have some form of epilepsy. I've managed to survive my life thus far with no serious injuries or illnesses (unless you count depression, which is what this new medication is for), and it's kind of freaking me out.

 

[Pinkattitude]

From my own experience, E is definitely something you can live with. In my 49 years with it, the worst I've done is burn a finger - and that was not an extreme burn by far, just a band-aid.

However, many on this forum have very different experiences. But you can learn lots of coping skills here, too.

That said, I'm not a doctor, but I'm wondering if you're starting to get something more in line with migraines? There seems to be a blurry line between seizures and migraines. I've had a few in my life, but I've know lots of women who get them, and they can just make you have to take a few days alone at home to recover.

I hope your GP can help you find out! That's definitely the right step to take. And starting a journal of what you eat, your sleep, work, stress issues, menses, etc., will be very helpful, too.

Good luck!

 

[AlohaBird]

Yes, I once heard a neurologist describe migraines and seizures as "kissing cousins". There is evidently a big overlap between the two. The same people having both and the same things being triggers for both.

I second Pink's suggestion about keeping a journal. Patterns start to show over time. Say if you are one of the people who are sensitive to MSG and you notice that you have a migraine or a seizure after every time you eat at that take out Chinese place, then you have something you can act on.

 

[travel bug]

I notice it while I'm in cars, too. It only happens when the sun is low enough in the sky that, while driving, it flickers through the trees. I've learned to put down my visor or put up my hand to shield my eyes from it, but it has happened on multiple occasions.

I don't have photosensitive seizures, at least I've never had one yet, but I'm very sensitive to sunlight flickering through trees the way you describe. It makes me feel like I *could* have a seizure as well as just plain queasy. And strangely, bright neon colors can have the same effect. Even just bright pink post-it notes. Despite feeling like they might cause me to have a seizure, they haven't yet.

During my one and only EEG I didn't have a seizure even with the strobe light flashing. The report did say I had abnormal brainwaves but I don't know if that was left over from the seizure I had had the night before.

 

[Ruth]

Welcome to CWE. CWE was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I was diagnosed by an EEG with strobe lights that confirmed that I have photosensitivity to lights with my Epilepsy.

I have the same things that you do.

 

[Nakamova]

I don't have photosensitive seizures, at least I've never had one yet, but I'm very sensitive to sunlight flickering through trees the way you describe.

I'm not particularly sensitive to sunlight, but in the past, bright/flickering sunlight would occasionally cause a visual migraine (scintillating scotoma) with no headache. It would last for up to an hour. But for whatever reason, I haven't had any since I started having seizures.
https://en.wikipedia.org/wiki/Scintillating_scotoma

 

[Ruth]

I had an old computer that did not have a glare screen. I had problems with photosensitivity with my computer and watching TV. Any lights that flash give me seizures.

 

[Carol11]

I am recently diagnosed with photosensitive occipital lobe epilepsy. I started having problems with photosensitivity 9 years ago after I nearly died from meningitis. I had a few possible seizure-like events occur over the years but they were very intermittent and I never bothered to see a neurologist about them. Then, I had a horrible experience in which I began hallucinating while driving which was triggered by the contrast and glare of lights at night. I had an EEG after this. When exposed to the strobe light during the EEG, my eyes began fluttering uncontrollably. This never happened to me before. I was fine after the EEG, but I did notice that my eyes fluttered a few times over the next hour. I did not think any further of it until that evening. I was looking at my phone screen, and my eyes began to flutter again. Then squint tightly together. My face felt as if it were twitching. I put my phone away and tried to read on my kindle. It happened again. I gave that up. But the light in my bedroom set me off. These episodes lasted 30 seconds to a minute, there would be a break in between and then they would start again. I was so miserable, I finally took a bunch of xanax and fell asleep because I could not take it any more.
I was fine the next day during the day but when night fell, it happened again when I was looking at my phone screen. It continued for the next 9 hours until I could not stand it any longer and I took a bunch of Xanax again. I also discovered that when these seizures occur, I can not speak. If I am in the middle of saying something when one starts, I stutter and fall silent. I also freeze in place.
To make a long story short, I ended up hospitalized because I was having seizures continuously all night every night.
My triggers are the following:
fluorescent lights
light contrast
screens- iphone, computer, TV, kindle (even turned all the way dim)
flashing light
when I am set off, having a lot of seizures, repetitive noises also trigger seizures- heart rate monitors, the dinging of a car door, clicking of a gas pump
I am fine in natural daylight, even if it's bright.
I never had these eye fluttering seizures until the day I had the EEG which was July 15 so this is all quite recent.
My neurologist put me on Keppra, it controlled the seizures and got rid of my permanent migraine BUT made my Bipolar I rapid cycle so I had to discontinue it. I am now on Zonegran. The seizures calmed down on their own before I started it so I'm not sure if it works yet or not. I've only been on it for 3 days.