Which Seizure Trigger Is Your Hardest Battle?

I’m seeing patterns emerge as I read other individual stories. The hardest trigger for me to control is stress. I may not notice it at first because I learned in my previous profession to squash it and deal with situations at hand. What I’m finding out is that the little stress meter keeps climbing until it boils over and that’s when I think the stress combined with electrolyte imbalance (salt) and heat trigger the event. Stress is the hardest to manage because loved ones are very nervous being with me My wife watches every body movement facial expression the whole picture of my behaviors. It stresses me more knowing she so stressed. Does that make sense?
I started out on 150mg of Lacosamide and switched to 200 mg. I have appointments coming up with my neurosurgeon and my neurologist
I have my nasel rescue spray Voltoco which is with me like an epi pen.
I probably should start deep diving into my diet that might turn up something. Fortunately I work out 3 to 4 times a week which helps with the stress. Sleep is an issue I’m working on. I’ve started taking ambien which is helping a lot. 7 to 8 hrs vs 3 or 4 hrs per night.
I’ve learned a lot from exploring the various threads and it helps in not feeling so isolated.

@newfielvr
Nice to see you've joined this discussion and thank you for sharing your own experience here too!
What you described about stress makes complete sense: that image of a "stress meter" quietly climbing until it boils over is such a good way to put it, and I can really relate. Yoga has taught me to connect with my inner self, which helps me notice stress before it builds up too much. Exercise helps me a lot too, especially playing tennis.
What you shared about your wife watching your every movement, and that adding even more stress, really makes sense too — it's such a hard loop, since she's watching closely out of love and fear, but that very watchfulness becomes its own source of pressure for you.
Have you and your wife ever talked together about this specific loop — her watchfulness, and how it affects your own stress?
For others here who've navigated this same loop with a loved one — watching them watch you, and feeling that added weight — what has helped you find a way through it?
Chris

I’m seeing patterns emerge as I read other individual stories. The hardest trigger for me to control is stress. I may not notice it at first because I learned in my previous profession to squash it and deal with situations at hand. What I’m finding out is that the little stress meter keeps climbing until it boils over and that’s when I think the stress combined with electrolyte imbalance (salt) and heat trigger the event. Stress is the hardest to manage because loved ones are very nervous being with me My wife watches every body movement facial expression the whole picture of my behaviors. It stresses me more knowing she so stressed. Does that make sense?
I started out on 150mg of Lacosamide and switched to 200 mg. I have appointments coming up with my neurosurgeon and my neurologist
I have my nasel rescue spray Voltoco which is with me like an epi pen.
I probably should start deep diving into my diet that might turn up something. Fortunately I work out 3 to 4 times a week which helps with the stress. Sleep is an issue I’m working on. I’ve started taking ambien which is helping a lot. 7 to 8 hrs vs 3 or 4 hrs per night.
I’ve learned a lot from exploring the various threads and it helps in not feeling so isolated.

@santosha

Hi Chris,

I will bring up the possibility during the next consultation in 2 weeks. I was curious about myself feeling “heaty” when meeting people and also there’s no need for me to turn down temperature of air conditioner when my wife who’s in the same room was feeling warm. That part was controlled by the front of brain, and during these reading I knew about FTD. And some symptoms described are present.

Let’s see. And oh yes, that mask I put on everyday is so tiring and the only time I can take it off is at home but then that’ll be in front of family. That’s not a good idea and place to do so either.

Cheers,
Louis

@louissc
Hi Louis,
I see your point about the "mask" — there's definitely a fine line between not wanting to worry others and hiding when you're struggling.
My father is the kind of person who was taught to always show a brave face, even when he wasn't feeling well — something I believe he may have learned during the war. This has made it much harder for the people around him, including me, to know when he genuinely needs help, because he's so used to hiding it. And for us specifically, there's another layer to consider: always wearing that "mask" can be stressful at times, and stress is a well-known seizure trigger. So the mask that's meant to protect others might, in some ways, work against us.
You mentioned feeling heated "when interacting with people or dealing with life," but not during exercise in high temperatures. To me, that sounds less like a physical trigger and more like an emotional or internal one. What goes through your mind in those moments, right before you notice yourself getting heated? Is there a particular type of interaction that brings it on more than others, such as big groups and strangers?
I'm also curious how you connected that feeling to frontal lobe dementia through your readings. Have you thought about raising it directly with your doctor, just to get a professional take on it?
Chris

@santosha

Hi Chris,

I understand the need to put on that “mask”. It’s inevitable, really. We don’t want others to feel something may happen. Atmosphere can become a bit tense if everyone is on their guard in case things happen.

I will try yoga next. I know it’s supposed to soothe one’s soul.

About the sweating thing. I don’t get seizures from exercising. But body can get heated in a cool environment when interacting with people or dealing with life. I read more about this during the weekend and realized the frontal lobe of the brain is responsible for that way I felt. Then I realized there’s this condition - frontal lobe dementia (FTD). Is that common over at your part of the world?

Cheers,
Louis

Hi @louissc
I've read that regular physical activity may help improve seizure threshold — that could help explain why exercising outdoors makes you feel good, even when it's hot outside.
You mentioned needing to feel that "zen," alone time. I have moments in my day when I need to be alone, just with myself — I've always had that, even before epilepsy was diagnosed, but today I may need more of that time for myself, especially when I need to reflect on certain things or when stress hits me. Yoga is one of the tools I use to connect with my inner self.
Sorry — I see now I wasn't clear with the word "mask." I meant it figuratively, like putting on a brave face.
Coming back to that: do you think always having to put on a brave face is one of your triggers, or is it more the anxiety of rushing to be somewhere on time — like waiting for a cab on a hot day?
Chris

Hi Kris,

I believe exercising gives a body endorphin and am not sure if that helps somewhat. I won’t say work is stressful, but it certainly doesn’t give me those endorphins and it definitely is more psychologically challenging a period although it need not hit the level of “challenging”. I hope how I feel makes sense too.

I’m sure masks won’t work for me, because that easier way to breathe without wearing mask actually helps post COVID.

Sometimes I just want to be alone. Not sure if anyone here feels the same, but I need to feel those “zen”. I hate weekends sometimes, because I know I can’t escape into the tranquility of an empty room with wife still on her YouTube and son already asleep which I can do on weekday evenings before sleep.

Do I make sense here?

Cheers,
Louis