Which Seizure Trigger Is Your Hardest Battle?

@royanthony
Hi, I know decaf coffee has alittle caffeine in it but it doesn’t bother me. I’ve been fine but I drink 1/2 to a whole bottle of water to drink afterwards as well. Name brands are so expensive. I like the fact of having generic brands of meds. A lady who had seizures since the age of 2 weeks old eventually stopped over time then started back up as a teenager. This medicine helps her as well as myself. I still get feeling of seizure but don’t go into one. My doctor said I have a long road into recovery due to surgery. At least now I can sing. YAY! Medicare is awful for the cost that people have to deal with. I’m trying to get a job at the Air Force since they have better insurance instead of relying on Medicare but in the meantime I’m looking into the hospital as well. I don’t know how that’ll work since I’m still needing to rest. Private insurance is what I have right now. Paying $1000 a month and on top of it medical expenses due to surgery/ hospital stay a couple times. Thankfully I’m in a payment plan but $600 a month with that. Ugh…,😒

For me, now it’s music and those advertisement on radio which can give me those aura.

Cheers,
Louis

Mine. Telling people till I am blue in the face aka husband parents brother extreme unnecessary emotional distress. So I am blamed told I am weak etc for having this boundary. Seizure free over 12 years. Relationship ending or altering in all thesd relationships.

@sam2446
Hi Sam,
Thank you for sharing the triggers that are currently your hardest ones to manage.
Not being able to sleep well is terrible — I've been there myself, back when I was on Lamictal. It was a nightmare, and the doctor finally agreed to switch me to another AED.
I checked the side effects of Zonisamide, which is the medication you're currently on, and trouble sleeping is among the most common ones. Here's the link: https://www.mayoclinic.org/drugs-supplements/zonisamide-oral-route/description/drg-20066787
I also share here a yoga nidra practice that's been very helpful to me along my epilepsy treatment journey. It requires no previous experience: https://www.youtube.com/watch. See if it helps you. I usually practice it once, after lunch, since it shouldn't be practiced after 4 pm. On days when I haven't slept well, I practice it twice — once in the morning after breakfast, and again after lunch.
Do you feel that the sleep struggles you're currently facing have increased your daily stress and anxiety — other well-known seizure triggers? Have you had the chance to report your sleep problems with Zonisamide to your doctor? If so, what did he or she suggest?
Chris

@royanthony
Hi Roy,
Thank you for the update. I'm sorry to hear that three companies gave you the same non-answer — it's exhausting to keep pushing and get nowhere.
You said it yourself — you're not someone who quits, but you don't need the extra anxiety and potential seizures that come with this fight. I think that's the right call. Chasing a response that may never come could become its own trigger. Stepping back isn't giving up, it's protecting yourself.
As I mentioned before, Starbucks could be a good decaf alternative in the meantime. Have you had the chance to check out their decaf options?
Chris

Hi @kb2014a
Thank you for sharing something so difficult. What you're describing sounds incredibly painful — having to set a boundary to protect your health, and being met with blame instead of understanding, from the very people closest to you.
It's a hard trade-off: you've been seizure-free for over 12 years, and it sounds like this boundary may be part of what's kept you well. But that same protection has come at the cost of relationships changing or ending. That's a heavy thing to carry, even when you know you're doing what's right for your health.
Has setting this boundary gotten any easier over time, or does the pushback from your family still weigh on you the same way it did at the start?
Chris

@louissc
Hi Louis,
Nice to hear from you again! Thank you for sharing your hardest triggers to manage currently: music and radio advertisements.
I can relate in a way — too much noise in certain places (restaurants, hairdressers, supermarkets) is uncomfortable for me too, and it can lead to stress, which is actually my hardest trigger to manage. I try to handle it by choosing calmer restaurants and going at hours when these places aren't as crowded.
How have you been managing these triggers? Have you stopped listening to music and turning on the radio altogether? Does the same happen when you're watching TV and ads pop up?
Chris

@gregd1956
Hi Greg,
Reading back through this discussion, I wondered if you'd had the chance to check out the discussion "How do you guys remember to take your medication?" since you mentioned forgetting to take your medications once. Members there have shared some good solutions — worth a look, if you haven't already.
Here's the link:
How do you guys remember to take your medication?
https://connect.mayoclinic.org/discussion/how-do-you-guys-remember-to-take-your-medication/
Chris

Hi All
I just came across this article again — it can be helpful for managing our triggers.
10 Common Epileptic Seizure Triggers and Tips To Avoid Them
https://www.myepilepsyteam.com/resources/triggers-and-epilepsy
Chris

@santosha yes this is a tough one. I have had trauma recovery domestic violence treatment. Yes it still bothers me. People in my life have controlling behaviors. Not ok. I had cranitomy to remive abcess left temporal lobe from bacterial meningitis of my brain. It was a catastrophic illness. I went into cardiopulmonary arrest. I look at it this way. It was an opportunity for my family to learn about what happened to me. No that did not happen. Controlling behaviors continued. Unnecessary emotional distress is a seizure precipitant. You can tell someone till you are blue in the face your behavior is not ok..does not always work. Actually can reinforce the negative behavior.