Anyone here with Photosensitive Epilepsy?

[Mav455]

Just wanted to ask how often you have seizures? I have about 2 a year, currently on Keppra. I`ve kinda gotten into the habit where if I see a flashing light I immediately cover my eye with my hand for 3 seconds (read about it on the internet), even if its a slow flash, just to make sure lol.

Also, has anyone had a successful pregnancy with Keppra? Did you continue taking meds, or did you stop them for the pregnancy. Ive heard Keppra is apparently safe but theres still the increased risk of birth defects and to be honest that scares me a lot, so any success stories would help me calm down

Thanks!

 

[valeriedl]

I don't have any problems with lights. My husband and I go to a lot of concerts and almost all of them have flashing lights. He'd make me close my eyes during it. I could still sort of see the lights even with my eyes closed because I wouldn't put my hand over my eyes though.

I got mad and finally told him that we were going to figure out if lights effected me because I wasn't going to pay to go to shows and have my eyes closed during them. I can't remember if we did something at home or if the neuro did it but we found out that lights don't bother me.

As far as being pregnant I know there are a good bit of people on here that haven't had any problems with it. I had a hysterectomy because I don't want kids and I didn't want to take the chance of getting pregnant. You will probably get some more advice about that from some other people.

 

[lindsayschu2]

it's funny--i have avoided flashing lights like the plague most of my life because i know they can provoke seizures, but i never really noticed that happening to me. I picked up my EEG results today in large part because i wanted to know if I reacted to lights (I didn't). Finally I can see flashing lights without recoiling like a vampire in the sunlight (so i know how you feel!). As far as pregnancy, I went med-free until I was 30. The hormones inspired my only tonic clonic and i went on Tegretol. I know it isn't the med you are on, but ultimately I felt like the risk of the med was less than the risk of having constant seizures. My son turned out perfect (of course i think so!)

 

[SoonToBeMommy]

Flashing lights bother me. I was on Keppra for most of my pregnancy until my neurologist decided to take me off of it for some reason, but my ob said it was one of the better ones while pregnant. I am 6 months now and really hate being off them because my seizures are more frequent now.

 

[AlexC]

Yep, photosensitive seizures skyrocket for me during the holidays. I have to wear my wrap sunglasses everywhere. I've heard about the closing one eye thing but haven't been able to try it. I must look funny because I get the heck away as quickly as possible!

 

[cadsgj]

Me, I have never heard (or read of) Photosensitive Epilepsy but I assume since flashing lights (certain types) and some weird types of lighting can cause me to have seizures, I fall into this field. The lucky part for me is I almost always have fore warning that a seizure is going to come so I can bail out and not have the seizure.

 

[KarenB]

Our son Jonathan, who's now 10 and has had epilepsy since age 1, had a bout of photosensitive epilepsy from September to December 2012. This was different from his usual epilepsy, which is tonic-clonic seizures at night. A new development, which has since, thank God, gone away.

In his case, he was having one to three tonic seizures a day, triggered by:
1) Getting too close to the TV screen
2) Sunlight reflecting off water
3) Bright over-head lights in one room of our house, and also in the mall
4) Car headlights shining into his eyes

This 4 month episode of photosensitive seizures followed a viral intestinal illness, which evolved into chronic gut problems. Medication wasn't especially effective (he was put on Zonegran, Diazepam, and Keppra during that time period -- Zonegran was the only drug that helped). What did help was working with his pediatrician/nutritionist in clearing up the gut issues - - through a very restrictive diet, MCT oil, zinc, probiotics, and digestive enzymes. The zinc and MCT oil helped the most.

Although Keppra can be helpful for photosensitive epilepsy, in our case, it didn't work. In fact, it wasn't until Jon was weaned off the Keppra that he regained full seizure freedom.

Yes, Keppra is one of the safer drugs (although none of them is really safe). If you're planning on a pregnancy, you might want to explore some dietary approaches to controlling seizures. There's one here that Bernard recommends, and I always forget the name, but I'll go look it up now -- it looks to be a safe approach. We found the selective carb diet to be helpful, along with the Ketogenic diet (but the Keto diet is probably too restrictive during pregnancy).

 

[KarenB]

OK, found it. The seizure diet that may be helpful during pregnancy (check with your doc of course) is the LGIT diet, which works on controlling the glycemic index (which pregnant ladies ought to be doing anyway). You can do a search on this forum on LGIT to get more info.

There's a very very long thread in the Kitchen section (Sunshine and Seizures) which explores photosensitive seizures, and a lot of the research that has been done on factors which may influence this type of epilepsy. It was invaluable to me when our son was in the valley of the shadow with the horrible daily seizures.

 

[Belinda5000]

I have photosensitive seizures

strobe lights bring on my seizures.computers can until I got a glare screen in my monitor.

 

[C0urt]

rarely, I used to. but I was also a bouncer in a night club. so I kinda had to get used to it