How to handle boyfriend with seizures caused by disco lights?

Hi, @delite - welcome to Mayo Clinic Connect. That is kind of you to look out for this guy you are dating and his welfare.

I know others have trouble with flashing type lights, as well. I'd like to tag some of them so they can chime in @santosha @dannoyes @jakedduck1 @laura1961.

Does this guy have epilepsy or another type of seizure disorder? I believe you want to know what you would do if he had a seizure to help him, correct?

Thank you @lisalucier as always you do such a great job moderating this group. @johnsondnr it is a pleasure to meet you. I completely agree with Lisa that it is really important for you to know the root cause of the seizures, such as whether they are caused by epilepsy or perhaps have some other cause. It is imperative not only to provide him with the best possible help but also to inform those around you about what is happening. In practice, if you have a seizure in public, emergency teams might be called to help. I know many retail establishments are mandated to call for help. When emergency teams arrive, they will ask for potential causes of the seizures, such as epilepsy, which is simply done for them to know how to help and also to determine the severity of the seizure. While epilepsy can oftentimes be managed with medication, seizures can be serious, especially if they last beyond a certain time threshold or if the individual has hit their head. In other words, seizures can be serious.

For this reason, many of us who have seizures avoid triggers to our seizures. This can include avoiding flashing lights. Just wearing glasses may not be enough to eliminate the risk. This is why movies and TV shows will post warnings about flashing lights.

Our friends and family (an even coworkers) know what they need to do if we have seizures. This oftentimes focuses on keeping us safe from hitting our head if we fall. Other than that the focus is just to let the seizure run its course. In my experience at Mayo Clinic they also helped me by trying to talk to me during my seizure "Dan, we're here with you. Everything is ok. You're having a seizure, but we got you." In other words, just offering words of reassurance. They did not hold me down, but let me seize and then when I stopped they'd just let me rest. In other words, just let the seizure run its course, they will stop after a few minutes, and as long as I'm safe it's going to be ok.

You're a good friend for asking.

@delite
Hi! I thought this article was interesting and might be helpful:
https://www.epilepsy.com/stories/shedding-light-photosensitivity-one-epilepsys-most-complex-conditions
I found it on the Epilepsy Foundation website.
Hope this helps!
Kerry

Many years ago, probably in the late 1970's or early 80's, I had gone to a teaching hospital, and they used a strobe light to monitored brain activity. The neurologist told me to stay away from flashing lights without any clear explanation. Since then, when driving, I always wear sunglasses because some months of the year, when driving where you have trees without leaves, you might experience sun shining through the trees creating a flash of sun between trees.

Thank you for bringing me into this discussion, @lisalucier !
Hi @delite!
Welcome to the group! Your dedication to learning how to help is really touching!
I see @dannoyes @keeg1010 and @njed have already shared some great advice. I'd also like to tag @tonyde who experiences seizures triggered by flashing lights and may have additional insights to share.
Photosensitivity isn't a trigger for my seizures—it's specific to certain types of epilepsy.
But I took the First Aid Course from the Epilepsy Foundation a while back and learned a lot from it. It's free and could be really useful for you. Here's the link:
https://www.epilepsy.com/recognition/first-aid-resources
A couple of other thoughts: if your partner is comfortable with it, recording a seizure on your phone can be really valuable information for his doctor. And it might be worth asking if he'd like you to have his neurologist's contact information for emergencies.
Has he shared other information about his epilepsy with you or just about the photosensitivity?
Chris

Hi @delite!
I came across this article today about epilepsy glasses for seizure prevention and immediately thought of you and your friend— I hope it might be useful!
Everything To Know About Epilepsy Glasses and Seizure Prevention
MyEpilepsyTeam
https://www.myepilepsyteam.com/resources/everything-to-know-about-epilepsy-glasses-and-seizure-prevention
Has your boyfriend ever tried or considered these glasses?
Chris