Have you experienced emotional challenges associated with epilepsy?

@rvince

Yeah, not being able to drive was the toughest part of epilepsy for me. I developed epilepsy as the result of a brain tumor and its treatment. Finally the meds totally controlled the seizures and I was allowed to drive again. One of the happiest days of my life. Right up there with my wedding day and the birth of my first child.

Where do I go?

Exciting places like the grocery store or hardware shop or to pick up the meds.

@qnc
Welcome to our group at Mayo Clinic Connect, and thank you for sharing your epilepsy journey with us. I hope that here you'll be able to make many connections with people who truly understand what it's like to live with epilepsy, exchanging experiences that might be helpful to you as well.
I have temporal lobe epilepsy, starting with auras and evolving mostly to complex partial seizures and rarely to tonic clonic ones. Once I accepted my condition and developed a more inward look at myself — yoga has helped me greatly with that — I started to be able to identify some prodromes, which helped me to take action and avoid seizures. For me, it's hard to put these unusual sensations into words. But they're very different from my auras, when I experience some strange smells and tastes and déjà vus. Like you, I stop what I'm doing and take deep breaths until I feel normal again, taking it easy for the coming days.
I also used to have seizures around my period — catamenial seizures, as they're called. Having identified this trigger with my neurologist, he worked together with my gynecologist to find a solution, opting to put me on a birth control pill without pausing for every 6 months. This has been a great solution.
When you mentioned experiencing anxiety and other sensations around your period, PNES (psychogenic non-epileptic seizures) came to mind. Since you already know that seizures tend to be more frequent around your period, that awareness itself can trigger anxiety — and sometimes what follows may be PNES rather than an actual seizure. The two can feel very similar, which makes them hard to tell apart. In my case, it was an EEG that confirmed I was experiencing PNES rather than a seizure. I've experienced PNES myself under different circumstances — after a good period of seizure freedom, when the anxiety of seizures coming back began to take over. The sensations you described were quite similar to what I experienced, including anxiety and sweating. There's a very interesting discussion about PNES here in our group, which might also be helpful to you:
Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
Have you shared these sensations with your doctor to evaluate whether you might also have PNES? As your seizures around your period follow a pattern, I believe it'd also be worth discussing with your doctor to see if there's a solution, as mine did.
I hope that sharing these experiences may be of some help to you on your journey.
Chris

@santosha Thank you for that.It was very helpful🤩🤩.I will have a chat with my doctor about it all and see what he thinks😄

@rvince
How long has it been since your last seizure?
Do you not feel safe because you're having active seizures?
Take care,
Jake

@rvince
How long has it been since your last seizure?
Do you not feel safe because you're having active seizures?
Take care,
Jake

@jakedduck1

It's been almost 3 months. I attribute it to my accidentally used 2 scoops of caffeinated coffee rather that my usual 2 scoops of decaf and 1 leaded. I believe it was the difference. I am always conscious of what I do with coffee. Only 1 cup in the morning and no more. I have no complaints and I care about all those who have epilepsy worse than me.

Hi @methel
This must have been a happiness bomb and a great milestone you achieved! 🌻❤️💜
Living with epilepsy teaches us to appreciate things we once took for granted, like driving ourselves to the grocery store or hardware shop. Simple — and yet so meaningful.
How have you been lately?
Chris