Which Seizure Trigger Is Your Hardest Battle?

@belinda5000
Hi Belinda,
This is a great solution for when you're with your congregation. 💡
Like you, crowded places disturb me nowadays, and I avoid them as much as I can. I recently started carrying a hidden disability badge, which gives me some priority in certain situations, such as at airports, museums, and restaurants. I've shared more about it in some posts that might be helpful to you as well:
https://connect.mayoclinic.org/comment/1560661/
https://connect.mayoclinic.org/comment/1604686/
Are there other situations or places where you still struggle with crowds?
Chris

Hi @kb2014
Thank you for sharing more details — it's given me a much clearer picture of everything you've been through.
I'm glad to hear you had support from a psychotherapist, and it sounds like that work has made a real difference. 🙏 As I've learned myself, therapy isn't about changing others — we can't control other people, only ourselves. It's about changing our own attitude and how we choose to respond to certain behaviors. Saying "no" sounds so simple, but actually holding that line — especially with the people closest to us — is so much harder than it looks. The fact that you've been able to do that, and keep doing it, is a real achievement. Congratulations on that! 👏💪
Chris

@louissc
Hi Louis,
No worries at all!
I love that you're taking an active approach with music rather than avoiding it altogether!
I actually tried listening to the Mozart K.448 piece myself for a while, but only for a short period each day. I couldn't establish a clear connection between listening to it and any decrease in seizures — it's possible I simply didn't give it enough time. I'm very curious to hear how it goes for you, both for the auras and the anxiety. Please keep me posted!
Let me see if I understood your last post correctly: you're describing an anticipatory anxiety loop, where the fear of having an aura creates a sense of paranoia, and that paranoia/anxiety then becomes a trigger in itself. Is that right?
If so, I can relate to that. My own fear and paranoia of experiencing another status epilepticus actually ended up causing me PNES. I've shared more about this experience in these posts, in case they're helpful:
https://connect.mayoclinic.org/comment/1383609/
https://connect.mayoclinic.org/comment/1598343/
Reading your description also made me wonder whether what you've been experiencing could be related to PNES (psychogenic nonepileptic seizures/events) — just a thought, not a diagnosis, of course! There's actually a discussion in our group on this topic that you might find worth a look, in case you haven't come across it yet:
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
Chris

Hi Chris,

I’m glad you had given music a try! I liked classical pieces, but unfortunately the Mozart piece didn’t seem to help much. Perhaps I need to find another rendition.

I did bring up the possibility of me having PNES but ultimately ruled it out. Perhaps the local weather doesn’t suit me. The warm and humid evening simply makes my brain feel weird everyday? I really can’t name any definitive reason despite so many years of dealing with this condition. There’s a real need for sure to smell the flowers a bit more and feel less stress about what’s going on around me.

In the meanwhile, may all stay optimistic things will get better.

Cheers,
Louis

@louissc
Hi Louis,
I'm sorry to hear that this particular Mozart piece hasn't been helpful for you, and thank you for sharing that. Maybe a different rendition could still be worth trying — let me know how it goes, as I'd be open to trying that Mozart piece again myself.
Warm and humid weather at the same time can definitely be bothersome. Have you considered air conditioners with both dehumidifying and cooling options for your home? That could help you cope a bit better with Singapore's climate. Just out of curiosity — how did your doctor go about ruling out PNES?
Keep holding onto that optimism, Louis!
Chris

@santosha

Hi Chris,

Oh Singaporeans are big fans of air conditioners. We need them wherever we go. Shopping malls. Homes. Trains. Buses.

For my case, the neurologist was simply confident mine is an epilepsy case and nothing to do with PNES when I questioned the probability. And admittedly I agreed. The muscle convulsions and auras, for my case, happen out of the blue most times. For PNES, one may need to feel stressed etc. but I’m quite sure I am not feeling much of those.

Thus, after all those scans showing just that wee bit of laceration somewhere in my brain, I had to agree with his diagnosis although my seizures and epilepsy remain refractory.

No worries. I will still remain upbeat! And I hope things will get better for you too. August is just round the corner and before we know it, 2027 is here.

Cheers,
Louis

@louissc
Hi Louis,
I've not yet been to Singapore, but this is one of the places I want to visit some day. From your description, the weather at your place looks very similar to that in Rio de Janeiro, where it's very humid and warm, and it's impossible to live without air conditioning, especially during the summer season.
Thank you for sharing more about how your doctor ruled out PNES.
Knowing the cause of our epilepsy and seizures can bring some relief on one side, but anxiety on the other. This is how I felt when a specific MRI showed my mesial sclerosis in my left hippocampus. So, I'm very happy to know that you continue to be committed to staying positive!
Living one day at a time and in the present moment has helped me much at these times.
Going back to what started our conversation — is it still the music and radio ads that challenge you the most, has the heat and humidity taken over as your hardest trigger, or is it a mix of both?
Chris