My wife gets coloured lights followed by seizures

[johnj]

My wife was told 6 months ago that she has Epilepsy due to unexplained seizures. She was given a course of medication which seemed to help but now she gets coloured flashing lights in both eyes, followed by loss of sight, then goes into a full seizure which lasts approx 3 mintues.
These coloured lights are nearly always triggered by going into large shops. The shops have high ceilings but no flashing or strobe lights.
And they are all different . ie..supermarkets, toy shops or chemists.
the lights start as quick as minutes of entering the shops.
Does anyone else have the same or similar symtoms to my wife?
And if so, what medication are you taking, and have the lights/seizures stopped?

John

 

[Rae1889]

Hi there John! and Welcome to CWE!

My first suspcion of the culprit is flourescent lights. They are a diabolical invention. Not only do they give people without E headaches and eye sore, but people with E are known to go into seizures. The "flashing lights" she is describing sound like her eyes not adjusting to the flourescent (ever go from really dark out to really bright and get those dots infront of your eyes? or vice versa) same thing. And if she is photo sensitive, she is reacting to the lights.

Did she have a seizure during the strobe light part of teh EEG?

As far as medication, looks like she needs to try a new one.

 

[johnj]

Hi, she didn't have a seizure during the strobe light part of the EEG...

The result came back clear, as did the MRI.

The flashing lights she gets are 90% caused by simply going into these shops, but the other 10% can happen anywhere...ie. at home, in the park

Doc's have her on 275mg/day of Lamicatol but due for increase upto 400mg...

 

[epileric]

Welcome to the site JJ

There are many people that have the tube lighting as a trigger to their seizures.

I know someone whose seizures are triggered by those lights & she's found that wearing yellow tinted glasses helps her a lot in the larger stores.

As for medications, they all react differently to people. 2 people can have the exact same types of seizures but will get different benefits & different side-effects from the same medication.

Sadly, if you plan to use medications to help your wife it's a game of "guess & by golly". Something that doctors don't consider are that things like diet & daily habits can have an effect on seizures.

I would recommend to your wife that she keep a diary of when she has seizures, when she takes her meds, sleeps, eats (& what she eats), moves her bowels (some people seem to be more prone to seizures with full bowels) & levels of stress. Doing that can make it so much easier to figure out her triggers.
Meetz here has a great list of what to keep track of, check the 6th message down. http://www.coping-with-epilepsy.com/forums/f20/hello-all-7989/#post78360

 

[Nakamova]

Hi John, welcome to CWE!

The colored lights are definitely a pre-seizure aura, or the seizure itself. Many people with migraines also experience this symptom, and as Rae says, fluorescent lights are often the trigger. It's possible that your wife might benefit from tinted glasses to help minimize the effect of the lighting. And there are many anti-seizure meds out there, so if the one your wife is trying doesn't seem to work, definitely contact her doctor about finding one that works better.

In addition, it's a good idea to keep a journal that records the seizures, and also take note of any potential triggers. In addition to lights, seizure triggers can include sounds, allergic reactions, certain odors, physical or emotional stress, sleep issues, smoke, low blood sugar, alcohol, hormones, and certain foods. Some people have found that special diets (like gluten-free, or Modified Atkins, or GARD) can help in reducing seizures. You can search for more info about those on this site, and feel free to ask questions if you can't find what you're looking for.

Best,
Nakamova

 

[dfwtexas]

I got diagnosed about a year and a half ago. EEG did show seizure activity, but I didn't have seizure from the lights. However most of my seizures have been at work....I believe it is from the flourescent lights. Since my diagnosis, I have been experiencing problems with flashing lights, strobe lights, movie in theaters.
If I close my eyes, I do see flashing lights during these photosensitive episodes.

 

[occb]

From what I've read, flashing lights and loss of sight are typical of seizures that originate in the occipital lobe, which is the visual processing centre of the brain. They may be caused by the fluorescent lights in those stores, which appears to be a fairly common phenomenon, judging by the responses above.

You mentioned it's particularly stores with high ceilings that affect her -- maybe the distance of the lights has something to do with it, or they use more intense fluorescent lighting because of the high ceiling. Or they all have lazy employees who refuse to replace malfunctioning tubes

 

[Meetz1064]

Hi there

and welcome to CWE!

Please keep in mind that reacting to a strobe light is NOT the same thing as all the different kinds of lighting there is out in the world......some of us react to shadows along the road when driving, others react to computer monitors and TVs, and yet others simply react to one specific COLOR of lights.

As for the MRI. Ahhhh, MRIs are used to determine if there is a PHYSICAL reason for the epilepsy to have shown up.....in other words, is there a scar, lesion, missing part of the brain or anything else that could have caused your wife to start seizing? MRIs do NOT determine seizure activity--EEGs do that.

EEGs have to be done long enough to capture seizure activity, and typically doctor's offices and hospitals only do them for 20 minutes to an hour or so. Truly, they NEED to be done for AT LEAST 24 to 48 hours to get a more accurate reading. If it's possible to get it done for a longer period of time, and even on an ambulatory basis, so that your wife could be exposed to her normal environments and triggers, so much the better.

Try to keep that journal Nakamova mentioned. They really do help. You'd be surprised the things that are found in journals in terms of patterns, and they really help the doctors.

I hope you like it here at CWE. There's tons of information in the Library and the Kitchen, and the Padded Room is great for venting. Feel free to kick back, and hang out. We'll be here for ya, I promise. One of the guys I'm sure will have some decent coffee. I keep burning mine.

Mr B, our host, has built us an AWESOME home here.

Take care, and I hope to see you around!

Meetz
:rock:

 

[Crystal11]

It seems like something I have. I have long and short complex partial seizures and sometimes due to photophobia, it will trigger my seizure. Usually it is short- but I can walk into a store from bright into darker environment and a shorter CP will start up- my eyes go to the right then my head follows and I can't talk- I don't have much awareness but am not totally unconscious either. Its annoying because I could be standing in the entry way or not far into the store and it happen. Othe times it doesn't happen at all- could be the fact that meds are helping quite a bit.
Keppra seems to be helping a lot with my little seizures. Tegretol does well with my longer CPs but now it doesn't work anymore. So we are changing over to Lamictal and see if it helps.
My neurologist told me that my seizures are coming from the left side of my brain and that is why I get weak on my right side in my arm and part of my leg.
Anyways- it can be frustrating sometimes. I am low-vision/functionally blind but have photophobia which causes extreme sensitivity to light- and I just got new glasses that are transitions/polarizatized/UV/drive-ware lenses that cost $500 to treat the lenses but it makes a big difference!

If I were you, I would look into some glasses like that- either prescription or not. Or Sunglasses that might block out blue spectrum of light. They might be expensive but they do help a lot.
I also have Nystagmus which causes my eyes to shake left to right and I see everything moving- but I also have tunnel vision to 20 degrees making the small part of my visual field nothing but hazy-colored area in which to see and only in one eye. The other eye died a long time ago.

Anyways- please take care, look into some glasses than might block out specific spectrums of light, mainly blue I believe- and see if that might help.
I would look into a eye doctor or someone who can help you or give you professional info on that.

Please take care,
Crystal

 

[Crystal11]

I forgot to mention- I went to my low-vision specialist and complained about seeing "sparks" as I call them. They are usually electric blue to white or silver and I usually see them before a seizure but not always. That could be an aura that preceeds a seizure. If she has GMs- it is quite rare for someone to remember or have an aura- but not impossible.
My auras/simple partial seizure lasts under a minute then a longer complex partial follows.

Anyways had a neuro said that those flashing lights are an aura for you? Or do they know?

My low-vision specialist told me its neurological and there is no way to fix it. I asked my doctor to look at my eyes and see if she can see them- she said no and that even dead blood cells I was seeing cannot be seen by the doctor, which means they cannot be fixed or removed. Kinda sucks.
Take care,
Crystal

 

[Jennifer Robles]

keppra and fluorescent lights

My daughter has also had some dramatic responses to lights. My 16 year old daughter has been taking keppra to control seizures for about 6 months. She is currently taking 2000 mg per day. She has not had any seizures since starting with the keppra but cannot be exposed to regular fluorescent lights for more than 10 minutes without blacking out for up to 2 hours. This happens at school and in some stores. She spent much of spring semester in the nurse's office at school unconscious. When we switched the lights in one of her high school classrooms to daylight fluorescent lights, there was no problem. I am wondering if the keppra is making her more sensitive to certain wave lengths of light emitted from the fluorescent lights. The pediatric neurologist who was caring for my daughter didn't think the blackout response was showing up on an EEG and therefore may not be a seizure. Has anyone else experienced these blackouts?

 

[epileric]

Welcome to the site Jeniffer.

I never used to be sensitive at all to lights until I was on Keppra for 6 months. I was pretty sensitive to flashes but since then I occasionally find the PC monitor seems to draw me in & provoke seizures.

I haven't found any material that says this is a side-effect of Keppra but it's nice to know I'm not the only person this happenned to.