Not All Seizures Are Visible - A Caregiver Perspective

Invisible illnesses or disabilities are hard to detect. Not everyone who experiences a seizure falls to the floor and shakes. It’s estimated that there are currently over 40 different types of seizures.

My daughter's epilepsy journey

In my daughter’s epilepsy health journey, which began with her diagnosis at age 8, she has never fallen, blacked out, or had a grand mal seizure. My daughter has a different type of seizure known as petit mal or facial seizures. These can include twitching around the eyes or lips, tingling on the cheek, and those are just a couple of examples of what she can experience if her seizures are triggered.

My daughter was also diagnosed with photosensitive epilepsy. For her, depending on the intensity of the flashing lights or images and her sensitivity level at any given time, even the simple act of sunlight shining through the trees can be a possible seizure trigger. You just never know.

Raising awareness for photosensitivity

Photosensitivity pre-warning signs and posters in buildings, malls, and events are one way to help alert those who may be light-sensitive.

Here is an interview my daughter and I did with CBC Radio Vancouver on living with photosensitive epilepsy: Listen here.

Current challenges and strategies

As of 2024, there are currently no anti-seizure watches, devices, or seizure alert dogs that could possibly warn us in advance for my daughter’s type of seizure. Some thoughts on this:

• We ask her neurologist at every appointment
• My daughter has no warnings to alert us of a possible seizure.
• Seizures for my daughter, when triggered, can last anywhere from 2 minutes to over 1 hour (for her, this is normal).
• Keeping track is important—journaling helps.
• Don’t miss a medication dose; take as prescribed.

Final thoughts

Epilepsy advocacy stories are extremely important every day to raise awareness, educate, and start a dialogue that not many people speak about.

I hope this content helps you!
Signed
Lorrie Forseth - Caregiver Perspective