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Chris Gautier, Volunteer Mentor avatar

Which Seizure Trigger Is Your Hardest Battle?

Epilepsy & Seizures | Last Active: Nov 25 8:39am | Replies (22)

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

@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

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Replies to "@royanthony Hi Roy! Twenty years is such a long time to go without that crucial information...."

@santosha I had the same neurologist for 16 years of that 20. He's retired now. We had such a great patient/physician relationship, I guess he just simply thought I knew about triggers. I don't think he was incompetent at all. As for sleep, I've had to come out of denial and admit to myself that for me to get 8 hours, my go-to-sleep, awaken, then go back-to-sleep is a 2 event each night. After about 5 hours, I'm up and eat breakfast and take my morning meds and then I'm able to get the additional sleep. I hope this helps someone else. It's a Godsend for me.