Connect
← Return to Which Seizure Trigger Is Your Hardest Battle?
Discussion
Which Seizure Trigger Is Your Hardest Battle?
Epilepsy & Seizures | Last Active: Nov 25 8:39am | Replies (22)Comment receiving replies
I also had to learn the hard way. Once diagnosed, in my opinion, there should be an education course named something like: Triggers 101, offered by a neurologist. I had 3 neurogists and none ever educated me about triggers.
It took about 20 years for me to learn about my daily activities in a manner you've mentioned, ultimately resulting in reducing the numbers of seizures I experienced in a given month. Once I identified these activities and made adjustments in my lifestyle, the number of seizures I experienced per month notably fell. Lack of sleep, and not in jest, was almost a killer for me.
Replies to "I also had to learn the hard way. Once diagnosed, in my opinion, there should be..."
Connect
@royanthony
Hi Roy!
Twenty years is such a long time to go without that crucial information. I'm so glad you eventually figured out what works for you, even though you had to do all that detective work on your own!
You're absolutely right—a Triggers Course should be standard when someone is diagnosed with epilepsy! It's so frustrating that we're often left to figure this out through trial and error, sometimes over many years. It was actually the Andrews-Reiter approach, not my neurologist at the time, that gave me guidance about triggers and lifestyle management. I'm sharing their website here in case it helps others: https://www.andrewsreiter.com/
Sleep is such a hard trigger to manage, isn't it? I experienced this firsthand in my early years after diagnosis—it was one of my biggest triggers and honestly, it was awful. Thankfully, after a medication change, I rarely struggle with insomnia like I used to, though my sleep still isn't quite what it once was. To help with this, I practice yoga nidra daily—30 minutes of this practice can be equivalent to about 3 hours of deep sleep!
I'm curious—what strategies have you found helpful for getting better sleep or dealing with those times when sleep is hard to come by?
Thank you so much for sharing your experience. It's such an important reminder for all of us, especially those newly diagnosed, about how critical it is to pay attention to our daily routines and identify our personal triggers. Learning from each other like this is truly invaluable! 💜
Chris
View Translation