Which Seizure Trigger Is Your Hardest Battle?

Hi @methel
I'm sorry to hear that even decaf coffee isn't working for you.
Have you tried Chicory root coffee? This is a coffee substitute made from roasted chicory root, which is a plant that naturally doesn't contain caffeine! It has a rich, slightly woody flavor very similar to coffee.
I actually learned about it while working in the coffee industry, though I have to confess I've never tasted it myself! But it might be worth trying as an alternative.
Chris

@royanthony
Hi Roy,
Thank you for sharing your sleep strategy!
The fact that you're getting your full 8 hours, even if it's in two sessions with breakfast and meds in between, is what matters most. Sleep is so crucial for seizure management, and you've found a practical solution that works. I'm happy for you!
I actually do something very similar! When I check my watch and see I didn't get much deep sleep during the night, I get up, have breakfast, take my meds, and then go back to bed for extra rest.
I'm curious – is there a trigger you're still working to manage better, or have you yet found good strategies for it?
Chris

@randallshields56
Hi Randy!
In the Xcopri discussion, you mentioned that you've learned to recognize when your seizures are coming, sharing some strategies to avoid them.
Would you mind sharing more about that here in this discussion? What do you think your seizure triggers are, and which ones do you still find challenging to manage?
Thank you!
Chris

@santosha the hardest ones are when i am under fire with questions that my mind cant spit out the answer fast enough for the examiner or doctor. i have to think what i want to say, say it in my mind then give them an answer, the correct one, not an answer just to get them off that question. that makes things worse so now i let them know in advance if able to be very patient please. light also sets off the seizures, different lightings if dimmed help. strobe lights are totally out of the question, i leave. lastly triggers can be many things, someone angry already for whatever reason brings that to the table, now yu have stress b4 hand to much and you can begin shut down mode.

@santosha again the trigger has changed, i can do everything right to a t. along comes a question that i need to answer and don't have a correct reply for and make that person angry or jump to why did you say that, how can you do that, in a matter of seconds your boxed into a corner just for saying something wrong or not meant as they took it. THIS is where i hold up one finger (which means give me a second to answer ) think of what you want said again and regardless how difficult. Spit it out. its helped if they except the new answer or even help if there impatient. these cause me to take a breathing exercise after just to settle the mind again. too difficult and i go to my room or palce i can relax some and get under control.

@randallshields56
Hi Randy!
Thank you for sharing your triggers with the group.
Unfortunately, epilepsy and AEDs can both affect our cognition. I've experienced cognitive decline too and am still learning to navigate it. This is one of the major reasons for my stress – actually, my hardest trigger to manage.
I think it's really smart that you've been telling people upfront about your epilepsy and that you might need extra time to process questions – it helps manage their expectations.
I've adopted a similar approach – I let people with whom I have an ongoing relationship know about my epilepsy and that I sometimes need extra time to remember things or respond to questions. Most people are understanding, which really helps reduce the stress. For example, I recently told my father's lawyer I wasn't having a good day and asked him to email me his questions so I could respond when I felt better.
I'm glad to hear that breathing exercises help you settle your mind, too!
If I remember correctly, you mentioned in other discussions that you use sunglasses to manage your light sensitivity. How has that been working for you? Have you noticed fewer seizures when you wear them in situations with flashing lights?
You also mentioned going into "shutdown mode" when someone is angry. Could you tell me more about that, please?
Chris

@santosha asked in rapid fire for my brain but will scroll and check questions then number them.1- cognition, what a thing to navigate. my functions were so many that needed addressed. learning, speech, memory even touch was just for starters. we as a family had to learn and adapt as we went day to day. -2- flashing lights, the shades my daughter ordered me with my prescription helps. I still try to get away as soon as able, no seizures from the school bus lights or in the last couple to few months.3- the mode. when someone would shout at something i thought was done correctly by me, not even at me directly i would hear out the yelling and then say that i would try harder, usually with tear filled eyes, then would go to my room. it has been addressed with the family and things have gotten better. hope i answered some of what you needed. have a blessed day.

@santosha
the prescription sunglasses, have reflective tint, can't see my eyes, at the corners the dim the light coming in really helps. i look like a power ranger. but the light restriction also helped me to think better, didn't have that glare.
could concentrate better

@santosha
Thank you. too many things at nec to sort thru are tuff, the mind starts to mix up the input and you cant seem to settle down, to quiet the madness. trigger function i realize i have too much on my plate. Rest your mind while you think outside the box a sec, best if you can motion someone for a paper and pen or have them handy with friend family member, someone. scratch key words to help you think. this also slows the mind to spell words slower to give the mind time to settle, hopefully that works. with family i raise my hand, i finger out to say time out needed and they can help with messages or whoever needs to be told a small time out please. too much info to move through, that and you really need a good nights rest first , don't fret about your appointment.

@santosha time out time need to get away from the computer for a bit do something else. Ty