Which Seizure Trigger Is Your Hardest Battle?

@randallshields56
Hi Randy!
Thank you for sharing your triggers with the group.
Unfortunately, epilepsy and AEDs can both affect our cognition. I've experienced cognitive decline too and am still learning to navigate it. This is one of the major reasons for my stress – actually, my hardest trigger to manage.
I think it's really smart that you've been telling people upfront about your epilepsy and that you might need extra time to process questions – it helps manage their expectations.
I've adopted a similar approach – I let people with whom I have an ongoing relationship know about my epilepsy and that I sometimes need extra time to remember things or respond to questions. Most people are understanding, which really helps reduce the stress. For example, I recently told my father's lawyer I wasn't having a good day and asked him to email me his questions so I could respond when I felt better.
I'm glad to hear that breathing exercises help you settle your mind, too!
If I remember correctly, you mentioned in other discussions that you use sunglasses to manage your light sensitivity. How has that been working for you? Have you noticed fewer seizures when you wear them in situations with flashing lights?
You also mentioned going into "shutdown mode" when someone is angry. Could you tell me more about that, please?
Chris

@santosha again the trigger has changed, i can do everything right to a t. along comes a question that i need to answer and don't have a correct reply for and make that person angry or jump to why did you say that, how can you do that, in a matter of seconds your boxed into a corner just for saying something wrong or not meant as they took it. THIS is where i hold up one finger (which means give me a second to answer ) think of what you want said again and regardless how difficult. Spit it out. its helped if they except the new answer or even help if there impatient. these cause me to take a breathing exercise after just to settle the mind again. too difficult and i go to my room or palce i can relax some and get under control.

@santosha the hardest ones are when i am under fire with questions that my mind cant spit out the answer fast enough for the examiner or doctor. i have to think what i want to say, say it in my mind then give them an answer, the correct one, not an answer just to get them off that question. that makes things worse so now i let them know in advance if able to be very patient please. light also sets off the seizures, different lightings if dimmed help. strobe lights are totally out of the question, i leave. lastly triggers can be many things, someone angry already for whatever reason brings that to the table, now yu have stress b4 hand to much and you can begin shut down mode.

@randallshields56
Hi Randy!
In the Xcopri discussion, you mentioned that you've learned to recognize when your seizures are coming, sharing some strategies to avoid them.
Would you mind sharing more about that here in this discussion? What do you think your seizure triggers are, and which ones do you still find challenging to manage?
Thank you!
Chris

@royanthony
Hi Roy,
Thank you for sharing your sleep strategy!
The fact that you're getting your full 8 hours, even if it's in two sessions with breakfast and meds in between, is what matters most. Sleep is so crucial for seizure management, and you've found a practical solution that works. I'm happy for you!
I actually do something very similar! When I check my watch and see I didn't get much deep sleep during the night, I get up, have breakfast, take my meds, and then go back to bed for extra rest.
I'm curious – is there a trigger you're still working to manage better, or have you yet found good strategies for it?
Chris

Hi @methel
I'm sorry to hear that even decaf coffee isn't working for you.
Have you tried Chicory root coffee? This is a coffee substitute made from roasted chicory root, which is a plant that naturally doesn't contain caffeine! It has a rich, slightly woody flavor very similar to coffee.
I actually learned about it while working in the coffee industry, though I have to confess I've never tasted it myself! But it might be worth trying as an alternative.
Chris

@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.

@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…

@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

@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