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Which Seizure Trigger Is Your Hardest Battle?

Posted by Chris Gautier, Volunteer Mentor @santosha, Nov 3, 2025

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!

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for royanthony
royanthony | @royanthony | Apr 6 10:17am
In reply to @santosha "@royanthony Hi Roy, Here is some data I recently researched on the American coffee market: -..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@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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@santosha Good Monday morning ! I appreciate all the time you used to help me. I wish you have a safe week.

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royanthony | @royanthony | Apr 6 10:23am
In reply to @tkmoyer3 "@santosha Well, I thought I’d give an update. I was starting to have mild headache in..." + (show)
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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.

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@tkmoyer3 Wishing you the best, as well. We'll look forward to any updates you feel comfortable stating. I personally believe that all who particate on our support group feel the same way.

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royanthony | @royanthony | Apr 6 10:37am
In reply to @santosha "@royanthony Hi Roy, Your point about the neurologist acting as a proactive intermediary with the insurance..." + (show)
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@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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@santosha
Hi Chris, I can't remember ( you know; short term memory syndrome ) if I responded to your question regarding large players in the coffee market. The answer is not something you would see on the grocery shelf. They are made by private entrepreneurs who built their business over the years. I've watched one climb routinely over the past year. They sell their coffee on-line. It's nice to have a live person who responds to their clientele. FYI: a large player in the coffee market is Community Coffee in New Orleans. Their, and other New Orleans large players use chicory to make a bold cup. I use their decaf, but it's not bold. Medium grade. I use big 2 tb of decaf and one tb of leaded (caffienated) to make a decent cup. Hope your Easter was pleasant.

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tkmoyer3 | @tkmoyer3 | Apr 6 11:36am
In reply to @royanthony "@tkmoyer3 Wishing you the best, as well. We'll look forward to any updates you feel comfortable..." + (show)
Profile picture for royanthony @royanthony

@tkmoyer3 Wishing you the best, as well. We'll look forward to any updates you feel comfortable stating. I personally believe that all who particate on our support group feel the same way.

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@royanthony
Thank you! I agree!☺️

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royanthony | @royanthony | Apr 6 4:55pm
In reply to @santosha "@royanthony Hi Roy, Here is some data I recently researched on the American coffee market: -..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@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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@santosha What fabulous info. Wherefrom do the estimated usages originate? Is it the American Decaf Market?

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Chris Gautier, Volunteer Mentor | @santosha | Apr 6 6:43pm
In reply to @royanthony "@santosha What fabulous info. Wherefrom do the estimated usages originate? Is it the American Decaf Market?" + (show)
Profile picture for royanthony @royanthony

@santosha What fabulous info. Wherefrom do the estimated usages originate? Is it the American Decaf Market?

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@royanthony
Hi Roy,
Thank you, I had a blessed Easter, and I hope you and your family did as well!
To answer your questions: the information I shared comes from research I gathered online, with the NCA (National Coffee Association) as the primary source for U.S. market data.
From my time in the industry — mainly in Europe and Brazil, though that was quite a while ago — Starbucks was already a significant player in the American market. From my own experience, they offer very good quality products and have some decaf options. As for Community Coffee, I'm afraid I'm not familiar with them.
Have you already tried Starbucks decaf option?
Chris

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Chris Gautier, Volunteer Mentor | @santosha | Apr 6 6:55pm
In reply to @tkmoyer3 "@santosha I was reading what you sent me. It’s interesting about progesterone because a retired fertility..." + (show)
Profile picture for tkmoyer3 @tkmoyer3

@santosha
I was reading what you sent me. It’s interesting about progesterone because a retired fertility gyn dr told me that it sounds like my progesterone is low and that I oughta mention that to my Dr. Unfortunately my Dr disagrees with that. But that was due to trying to get pregnant at the time. As of today I’m feeling better but it’s only morning. But yesterday I thought I’d give it a try and lightly sing. Which is something I love to do and the twitching instantly started. The intern nurse that was there that day for the Dr increased the med to 150. I was a bit surprised because the Dr specifically told me that if the dose of 100 twice a day was giving issues. He would change me to a different med. He doesn’t want me on a high dose since I’m sensitive to the side effects but he also doesn’t want to go the other route due to the side effect of reducing sodium.

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@tkmoyer3
So glad to hear you were feeling better this morning. I hope that carried through the rest of your day!
Since the nurse's recommendation doesn't seem to align with what your doctor advised, it would be worth reaching out to him directly to clarify.
Chris

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louissc | @louissc | May 29 7:33am

Greetings from Singapore!. It's just being in a job which one cannot get out of, and overthinking things putting me in stress when I should just chill a bit more. Being in a family with members who keep asking "are you ok?" when I, say, dropped something like my iPad pen. It's just that frustration. I hadn't been ok for the past 10 years. So, what do you mean whether I am OK? Obviously I am not ok; no need to ask at all. If I am about to die, I will let you know. By the way, does anyone know whether one with epilepsy lives shorter?

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sam2446 | @sam2446 | 17 hours ago

Hi guys I thought I should share what triggers my seizures but first off I have generalized epilepsy and I mostly have myoclonic jerks but every now and then tonics clonic. My main big one is sleep and it doesn’t help that I have insomnia and I know that Chris had directed me to this chat and also asked me if I had found anything that helped me fall back asleep and no not really i listen to what’s considered brown noise because white noise hurts my head and gives me pounding headaches, my second trigger is stress and my anxiety if I wasn’t on my medication currently I’m pretty sure I would have to be hospitalized currently with how severely stressed out I am with my work and personal life but I have been seeking help. I read from someone’s post on here I can’t remember her name but it wasn’t Chris but, she said she can still feel the seizure even then ones not happening or at least that’s how I took it do any of you guys feel the same way because with my jerks and when my meds are working sometimes I can still feel when some would happen if I wasn’t on meds even though they aren’t happening if that makes sense and I can’t explain the feeling/ sensation behind them it’s something that I would have to explain in the moment. I did just get an mri done and nothing came back for epilepsy the doctor said” No definite epileptogenic abnormality.”besides me having a arachnoid cyst it’s benign in the back of my brain they said it’s small but I normally have a decent amount of pressure in that part of my head and they where I hit my head when I head my first tonic clonic so yeah I would love to hear what you guys think I’m sorry if I rambled a lot but I’ve have a lot thrown at me about my health and I don’t know how to feel about it or what to do about it

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