Owhen - Personal Research

[ehinOWHEN]

Hey everyone,

I wanted to reach out and see if anyone else here has noticed a strong tendency to find, follow, or even rely on patterns in your day-to-day life. I’ve noticed this myself and wonder if it’s more common among people with epilepsy than we think. I don’t know if this is a research that has been done by neurologists before. Because I genuinely feel it has to take someone living with epilepsy for a 'cure' to be found for epilepsy.

For example, I find myself often creating routines or specific patterns I follow throughout my day, and if these routines get disrupted, it can feel unsettling or even trigger anxiety. It could be something like always arranging things in a certain order, following a certain route when walking somewhere, or even having a specific routine and time for meals. I sometimes wonder if this has to do with how epilepsy impacts the brain’s wiring and rhythm, given that the brain itself is so reliant on patterns.

Have any of you noticed a similar preference for patterns in your life? If so, what kinds of patterns do you tend to follow, and how does it make you feel when you stick to them (or when they get disrupted)? I’d love to hear if this is something others have experienced, and whether you think it’s related to living with epilepsy.

Looking forward to hearing your thoughts!

 

[Sabbo]

Hello. I know that I have always tried to follow a schedule. I get up really early--around 4am, and unless there is something we are doing, I'm usually asleep around 10:30pm. Now that my both my sons are gone (the older one works in California, the younger one just started college), my husband & I are the only ones always in the house.

I have always noted that if I try to stay up late for too many consecutive nights, I'll have a seizure. It will usually be a complex partial seizure, even if I took my medications properly. Another thing that will often trigger my seizures is stress/tension, even if I'm not feeling those things. Sometimes those seizures may occur a while after the situation that brought on the stress.

Despite having a BS in Economics, due to my seizures, I couldn't work--transportation was an issue for me. Now, I'm hoping to find a remote job.

 

[ehinOWHEN]

Hello. I know that I have always tried to follow a schedule. I get up really early--around 4am, and unless there is something we are doing, I'm usually asleep around 10:30pm. Now that my both my sons are gone (the older one works in California, the younger one just started college), my husband & I are the only ones always in the house.
I have always noted that if I try to stay up late for too many consecutive nights, I'll have a seizure. It will usually be a complex partial seizure, even if I took my medications properly. Another thing that will often trigger my seizures is stress/tension, even if I'm not feeling those things. Sometimes those seizures may occur a while after the situation that brought on the stress.
Despite having a BS in Economics, due to my seizures, I couldn't work--transportation was an issue for me. Now, I'm hoping to find a remote job.

 

[ehinOWHEN]

Hello. I know that I have always tried to follow a schedule. I get up really early--around 4am, and unless there is something we are doing, I'm usually asleep around 10:30pm. Now that my both my sons are gone (the older one works in California, the younger one just started college), my husband & I are the only ones always in the house.

I have always noted that if I try to stay up late for too many consecutive nights, I'll have a seizure. It will usually be a complex partial seizure, even if I took my medications properly. Another thing that will often trigger my seizures is stress/tension, even if I'm not feeling those things. Sometimes those seizures may occur a while after the situation that brought on the stress.

Despite having a BS in Economics, due to my seizures, I couldn't work--transportation was an issue for me. Now, I'm hoping to find a remote job.

Hi,

Thank you so much for sharing! It sounds like you’ve developed a solid schedule over the years. I get what you mean about late nights affecting seizures, even with medication. It’s a bit like our brains have this internal “pattern detector” that thrives on routine, and when that gets disrupted, it can definitely impact our health.

I’m also curious about your remote work plans. Have you found any specific type of work you’re aiming for, or are you still exploring options? I think remote work could be a game changer for many of us here, especially when transportation or physical limitations make traditional jobs tough. This even buttresses the whole discussion room in the forum focused on career and schooling resources for people with epilepsy, so we can share job leads, tips, and experiences. I know there are many of us who either struggle with work due to seizure patterns or, like you, are interested in finding remote opportunities to fit our needs better. We could even help each other prepare for different roles, maybe even do mock interviews if anyone’s interested.

I hope you find something that’s a great fit for you, and thanks again for chiming in about your routine—it’s encouraging to see how others are managing and adapting!

This approach opens the door for Sabbo and other forum members to start a broader conversation about work and study challenges and resources that might be helpful for everyone. Let me know if you’d like to add or adjust anything.

 

[Heavy Kevy]

A consistent routine is extremely helpful for me.
Kinda silly but I like to have the kitchen clean before I start my other projects. But that’s just my preference.
It’s my sleep schedule, post seizure that makes it difficult to keep any routine consistent.

 

[gina19]

I can not stand odd numbers.

If I see an odd number, we have an issue

Everything has to be even numbers. So: food on the plate- even number of pieces. volume on the TV- an even number. if I buy something, it comes in twos. If I go out, I need to wait for the clock to reach an even number time. Don't, give me, an odd number- I'll end up struggling. Badly

My other one is that, in any circumstance, I have to eat my breakfast before 8A.M. If I eat breakfast after that time, the day is wasted- and if I'm unable to get up at that time because I'm resting after a seizure, I simply don't eat breakfast that day. Simple as that.

 

[gina19]

Christmas is coming up, and I am going to eat turkeey christmas day.

I find turkey dry and don't really enjoy it, but I do it every year. I don't want to know what will happen to me if I don't eat turkey

 

[ehinOWHEN]

Hi,

Thank you so much for sharing! It sounds like you’ve developed a solid schedule over the years. I get what you mean about late nights affecting seizures, even with medication. It’s a bit like our brains have this internal “pattern detector” that thrives on routine, and when that gets disrupted, it can definitely impact our health.

I’m also curious about your remote work plans. Have you found any specific type of work you’re aiming for, or are you still exploring options? I think remote work could be a game changer for many of us here, especially when transportation or physical limitations make traditional jobs tough. This even buttresses the whole discussion room in the forum focused on career and schooling resources for people with epilepsy, so we can share job leads, tips, and experiences. I know

Christmas is coming up, and I am going to eat turkeey christmas day.

I find turkey dry and don't really enjoy it, but I do it every year. I don't want to know what will happen to me if I don't eat turkey

Hi Gina,

It’s fascinating how so many people in the forum share this same attachment to patterns! The more responses that come in, the more I’m seeing how common it seems to be among people with epilepsy, it really does make you wonder about any deeper connection there.

I get what you mean about even numbers, though! It sounds like keeping things even gives you a sense of control or calm, even if it’s as simple as the volume on the TV or the pieces of food on a plate. I think we all find routines that help bring order or comfort into our lives, and maybe the way epilepsy affects the brain just heightens that tendency.

As for your Christmas turkey, I’d love that for you! In Nigeria, eating chicken or turkey during Christmas and New Year’s is such a huge tradition too. it’s really a big part of the holiday culture here. I’m hoping for enough stability by then to join in on the celebrations myself.

Owhen

 

[Sabbo]

I've always loved doing puzzles & working w/numbers. I also love quilting or counted cross stitch embroidery. To me, quilting is like a big jigsaw puzzle, as is counted cross stitch.
As I mentioned elsewhere, the only reason I didn't do a BS in accounting was probably the counselor at my junior college. He kept encouraging me to do all the advanced courses I did there (which didn't transfer).

 

[ehinOWHEN]

I've always loved doing puzzles & working w/numbers. I also love quilting or counted cross stitch embroidery. To me, quilting is like a big jigsaw puzzle, as is counted cross stitch.
As I mentioned elsewhere, the only reason I didn't do a BS in accounting was probably the counselor at my junior college. He kept encouraging me to do all the advanced courses I did there (which didn't transfer).

Hi, I can totally relate to that story of doing something else entirely in school. I had my heart set on studying astrophysics, but finding a school in Nigeria that offered it was pretty much impossible. My uncle suggested I go for petroleum engineering instead, given Nigeria’s oil industry, and it seemed like a solid plan in 2018. But, plot twist, I didn’t quite hit the required score, so I ended up in chemical engineering instead

Funny how life sometimes throws us into fields we never planned, right? piecing together the unexpected with the things we’re passionate about.

 

[gina19]

At school, every friday afternoon, our teacher used to play the song copa cobana by bary manilow (end of the school week, so that's what we got. every friday). We knew the last bell had gone when he played that song

One friday she told us that because we were running late she couldn't play it because she had to finish the lesson

Queue for a seizure, and the strange thing was, in all my weeks at school, I can never recall having one on friday afternoon (friday afternoons used to be free period, and I used to see the animals in the garden, it was calming)

But that set me offf. I ended up staying at school at least an hour after everyone else had gone home because after I came out of it, I went to lock myself in the toilets and they had to get me out... or try to..