u/Serious-Lack9137

Hello!!! Has anyone here experienced something called Sensory Gating? This is when during an awareness phase, , even a small sound (like a refrigerator humming) feels like someone is screaming in your ear because your brain has lost its ability to filter out the "noise."

First I thought it was because during brain surgery 2, a surgeon fixed my hearing but...turns out, it goes way beyond that. During my auras and focals, every sound....no other way to say it other than... bothers me. Like pierces and I have to get away. Could be my wife talking to me and starts shaking a can of spray paint, or someone talking to me at work and starts tapping their pen.

Hello!!!!

I have been doing a lot of research into how metabolic shifts impact seizure activity. I have personally found that changing my “fuel source” through diet has helped me find a bit more clarity and stability.

Clinical research strongly supports this connection, showing that ketogenic and modified Atkins guidelines are frequently recommended for epilepsy because shifting the brain from glucose to ketones helps reduce electrical excitability and raises the seizure threshold (always a good thing). On a personal level, adopting an elimination diet was impactful for me in many ways. It helped me drop the inflammation (clothes and my wedding ring fitting was a huge win), stopped me from being constantly itchy (sleep without Benadryl!), and lowered my daily aches and pains from high levels to barely noticeable. Stripping away that physical stress is what finally gave me the bandwidth to focus my energy on my TBI recovery.

A friend of mine has had a severe physical toll of metabolic disruption and her episodes take a massive toll on her system, from seizures /fainting /severe memory loss to severe vomiting that drains her and leaves her incapacitated for days on end only to be set up for another round in a cycle that never allows her to recover fully. An elimination diet has helped her so much she is now able to manage and focus on the other aspects of her conditions. It is a harsh reminder of how deeply connected our physical fuel and neurological system really are.

If anyone is diving deep into this connection, I highly recommend checking out r/MetabolicEpilepsy.

It is definitely not a "one size fits all" solution, but I am curious: has anyone else explored the link between your diet, fasting, or general metabolic health and your seizure frequency?

I would love to hear your experiences with "brain fuel".

 

I have always been a huge music nerd.  I have a massive collection of over 6,000 CDs and a few hundred LPs (not counting the digital files), and I have noticed that sound production and fidelity can really impact my neuro-sensitivity. As a Highly Sensitive Person (HSP), sometimes after an episode or during high stress, certain music acts as a sort of "neural medicine" to help me ground myself.

In the world of high-fidelity audio, frisson, or those "musical chills", is the ultimate benchmark for a system's performance. Music does not just "distract" you; it physically shifts your nervous system from a state of post-seizure "0%" back toward joy.

I am especially sensitive to "frisson", which are those physical chills or goosebumps you get from a specific chord change or a powerful vocal. For me, that feeling is like a jolt that helps restart my internal battery when I am feeling wiped.

Does anyone else find that their hobbies, whether it is music, art, or something else, help stabilize you when things feel…off?

Is there a specific album or artist that triggers that "frisson" or acts as "medicine" for you when you feel overwhelmed?

HEY!

I have officially made it a full year as being diagnosed with epilepsy! I have read a lot, talked a lot, and listened a lot to people on Reddit and YouTube to get a grasp and ideas on this. Even though I had seizures, brain surgery, and different types of seizures, I wasn't officially diagnosed until April 2025. THIS is why I didn't full force research until then.

Anyway, everywhere I listen and engage, we often talk about the seizure itself, but I am curious about your postictal recovery protocols. That "electrical wave" feeling often leaves my internal battery at 0% for hours or even days. 

When you feel physically weak or "wiped" after an FAS, what is your go-to move to get back to a functional baseline?

 Is it a total digital detox, a specific environment, or just sleeping it off?

 I’m looking to see what "recharging" looks like for others here.  For me, it could be sleeping 15 hours a day for a week or so, or cutting back on engagement where I may not be receiving as much love as I was putting out there. I guess I have realized that recovery is not just about the physical rest... it is about being in a space where the energy is a two–way street. That is why I have migrated to working with those where we are all “leveling up” together, rather than just shouting into the void.

Hey All!!!

As an IT Analyst, I find it impossible not to view my epilepsy through a technical lens. I tend to think of my brain as the hardware and my thoughts/actions as the software.

When a Focal Aware Seizure hits, it feels like a hardware-level "interrupt"... the operating system is still running, but the CPU is spiked at 100% and everything else has to wait

If you aren't a "'tech" person, think of it like a storm moving through a power grid. Your house is still there, and the lights might even be on, but the voltage is surging so wildly that you can’t actually plug anything in or use the microwave without a flicker. You are 'home' and present, but the internal system is being squeezed by an electrical force that you have to just wait out before you can go back to your normal routine.

Does anyone else use specific metaphors or analogies to explain their seizures to people who don't "get it"?

How do you describe the 'glitch'?