Which Seizure Trigger Is Your Hardest Battle?

Thank-you, @santosha
I am a TBI Member from my accident in 2012. So, “seizure” could happen if use my meds 3 times a day. Physically I feel better from my accident. Part of my memory is gone and other mental problems like understanding or my past. Other go things are great like helping, doing, cleaning and a few others. I’m alive in my human-life For me, the end of my human-life gos to a better Love of Jesus Christ and daily He helps me, every day. He fixed my human-life better than before - everyday! ❤️

Thx
Greg D. @greg1956

@gregd1956
Hi Greg,
Thank you for sharing your story.
I'm glad to hear you're feeling better since your accident. It's wonderful that you've found strength and purpose in your journey after your TBI. Your positive attitude is truly inspiring!
If I understood correctly from this post and others you've shared, you still experience seizures from time to time. I'm curious—do you notice any warning signs that a seizure might be coming? If so, what are those signs, and how do you manage them?
Thank you again for being so open about your experience.
Chris

Dear @santosha
4 years ago, my doctor added or changed my anti-seizure meds. That was great, but still I take 3-times-a-day for that anti-seizure. One time, mths ago, I for got my med that morning and had a seizure hiures after before did not that my meds. No more - 3 times a day. I hate taking those anti-meds but it’s there - For now, 🙂…
Thx,
Greg D. @greg1956

@santosha

In reply to your question about seizure triggers: Caffeine is my issue. If I’m faithful with my meds, the most I will have are minor focal seizures which remain localized. (My last one, years ago, only 1/2 of my tongue twitched for 10 seconds.) But after 2 cups of great brewed coffee, I once woke up on the floor after losing consciousness with a seizure which generalized. Caffeine is everywhere: coffee, OTC meds, soft drinks, chocolate. Just not in ‘energy drinks’. So it means compulsively reading labels and quizzing waitstaff, what’s really in this ?

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.

@gregd1956
Hi Greg,
I'm so happy to hear you've been able to control your seizures so well with medication! That's truly wonderful, and honestly, it gives me—and I'm sure many others here—real hope that better control is possible for us too.
I hope you've found a good way to stay on track with your medication!
Have a wonderful weekend!
Chris

@methel
Hi there!
Thank you so much for sharing your experience.
Cutting caffeine from your diet must have been quite a challenge—it's in so many things! I really related to what you said about "compulsively reading labels and quizzing waitstaff." I do the exact same thing because of my gluten intolerance, which can trigger my seizures. It's so exhausting sometimes, isn't it?
I wonder if decaf coffee might be an option? It still has tiny amounts of caffeine, but your doctor would know best if that would be okay for you.
Have a nice weekend!
Chris

@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

@santosha

I thought of that and tried decaffeinated coffee, just once, and had a seizure. Apparently the decaffeinating process eliminates much, but not all, of the caffeine. For most people and conditions, that’s good enough. But for some reason I am amazingly sensitive to the caffeine. And so…

@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.