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Which Seizure Trigger Is Your Hardest Battle?
For two years after my epilepsy diagnosis, I had no idea seizure triggers even existed. The doctors I saw never mentioned them. When I finally stumbled upon the concept of seizure precipitants, it felt like discovering a missing piece of my own puzzle.
That's when I turned into a detective of my own body. Armed with a daily journal, I started connecting the dots between my seizures and what came before them. Slowly, but surely, the culprits revealed themselves: gluten, low sodium, poor sleep, my menstrual cycle, stress, and anxiety. Each one a potential match that could light the fuse.
The physical triggers: poor sleep, gluten, menstrual cycle and low sodium? I've learned how to manage them better. Eliminating gluten alone slashed my seizures by 60%.
Anxiety and stress— They remain my most relentless opponents in this battle, despite my yoga practice and exercising.
Now I'm wondering: What's YOUR toughest trigger to tame?
Have you found strategies that actually work? Whether it's something you've mastered or something that still defeats you, I want to hear your story. Your experience might be exactly what someone else needs to hear today.
Share your trigger battles below—let's learn from each other!
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@santosha
Well, I thought I’d give an update. I was starting to have mild headache in different spots of my head, a couple times a flash of white on the side that was like a second and eye lid twitching. When I had my follow up. The eeg was very active on the right side due to the surgery. Which didn’t surprise the doctor due to, again, the surgery. The MRI turned out good. My medication was increased for the evening only due to what I stated already. Since it was a week from my mentrual cycle. They believe that was the cause. The increase helped take the twitching away but not during the day. Especially now that the cycle is over. I have a follow up at the end of April but I believe I may have to call again. This is a weird feeling with the eye and the other eye will only do that if I close my eye and say I roll my eyes around and it’ll do it slightly. I’m not sure if this is just a side effect from the med or healing process from the surgery. In time I suppose I’ll see.
@royanthony
Hi Roy,
Here is some data I recently researched on the American coffee market:
- American Decaf Market (retail and out-of-home): USD 1.65 billion (2025), with projected growth (CAGR) of 7.67% over the coming years, driven mainly by premium decaf offerings
- Retail/home consumption accounts for 55% of this market, while out-of-home/foodservice contributes 45%
- Total US coffee market (retail and out-of-home): USD 23.76 billion (2025), of which retail accounts for 87.25%; the decaf segment alone represents 7% of the total market
- Decaf daily drinkers: 26 million
The NCA (National Coffee Association) could be a valuable resource for this project!
Wishing you success with the coffee company you are working with!
Chris
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@tkmoyer3
That's wonderful to hear! Wishing you all the best for your neurology appointment next week. I hope the MRI and EEG results bring good news 🙌.
Chris
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1 ReactionThat's lovely to hear, @ellierwin! Respecting our body and mind's limits is always important — and even more so when living with epilepsy.
Chris
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@santosha Yes they were. I'm still working on one of them. I'm trying to come up with factual dollar profits that will convince them it's worth their company's money to proceed. IMO, the easiest way to get factual numbers is use percentages. We have 3.5 million people in the U.S. who have epilepsy. For example: How many people drink coffee? How many cups per day? How many of those who drink caffeniated coffee and who have relatives of the people who have epilepsy will change to decaf? Using a conservative % of 1/3rd of that 3.5 million plus new decaf drinkers, I see big dollar profits. If anyone has any idea as to how I can gather factual numbers, please comment. I'd love to see a bold K-cup decaf. I think that's a winner. If people want a quick cup, they'll use any type of coffee. The BOLD taste is the key.
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1 Reaction@santosha
It seems to be working out well. I see the neurologist next week for a follow up as well as the update on the MRI and EEG. I believe with other feelings I have is in the process of continued healing from the surgery especially being older compared to when I was younger. ☺️
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2 ReactionsThank you for the like.
@santosha taking deep breaths and sometimes taking a time out
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2 Reactions@royanthony
Hi Roy,
Your point about the neurologist acting as a proactive intermediary with the insurance company is so valuable. It really highlights how much of a difference a physician who is willing to go the extra mile can make for their patients.
Thank you for sharing that!
About decaf coffee - just out of curiosity - were these coffee companies large players in the market
Chris
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@tkmoyer3
I'm amazed to hear how many of you have had seizures triggered by caffeine! I'm glad to know that decaf has been working as a solution for you. Born in Brazil, where coffee is practically a cultural institution, and having spent quite a while in the coffee industry, giving up coffee entirely — regular or decaf — would be a real challenge for me, I must confess!
Since the concept of triggers is new to you, I'd suggest starting with a diary as Dr. Andrews recommended when I began working with her on trigger management. It helped me enormously in identifying my own triggers. Sleep deprivation, for instance, is known to be one of the most common ones.
How have you been doing since the increase in your medication?
Chris
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