This text should not be taken as medical advice, nor as a diagnostic tool.
This is just my personal experience.

I have epilepsy

«So, you fall down to the ground and have convulsions» - «No»

«So, your seizures are triggered by flashing lights in Pokemon» - «No»

So, How is it then?

Epilepsy is a condition in which, during a seizure, the brain loses control of itself, and there’s a period of uncontrolled neuroelectric activity in the brain, abnormal, therefore the brain stops working as it usually works

How did I learn I have epilepsy?

The triggering event

During 2020 it happened multiple times that I stopped reacting to external stimulus during a couple of minutes, the two most obvious occasions I was with other people around, I didn’t realize it happened, but they did, they called my name, they poked me, they shook me, and I didn’t come back with that. After the second obvious event I went to see a neurologist, during a one-hour session, connected to a electroencephalogram machine she was able to see very clearly I have epilepsy. I lied down on a bed, fall asleep as part of the test, and my brain shown this irregular activity.

What then?

The doctor forbid me from driving, riding my bike, be alone in a situation where losing contact with reality would be a risk. This happened during the COVID pandemic first couple of years, so the impact of that was less bad that it could have been. More analysis happened, I did not have a tumor in my head, I haven’t had an accident that would explain a new condition, there’s nothing to remove or move to fix the condition.

Drugs. A relatively new drug, discovered 25 years ago, that no one knows how it works, literally, reduces the event of out-of-control neuroelectric activity, and then prevent this absence events from happening. After about a year of adjusting the dosage, confirm that the full-disconnection events were gone, I was able to go out again alone, to drive, but I choose not to ride my motorcycle anymore.

How does it feel to have a full seizure?

I have no idea. I don’t remember. I didn’t even realize. And these stopped happening when I started the medication

How does it feel to have a partial seizure?

These are usually refer as cognitive «auras». These last from 30 seconds, and sometimes the symptoms last with lesser intensity for up to 15 minutes.

I experience a combination of several of these at once:

1. Expressive dysphasia/aphasia: the inability to speak, I know what a want to say, I’m aware of things, but I can’t talk.

   • Lasting usually 2 minutes

   • Happen every second day on average

2. Receptive dyspasia/aphasia: the inability to understand what it’s said to me.

   • Lasting usually 2 minutes

   • Happen every second day on average

   • Usually at the same time as the expressive aphasia

3. Anomia: a difficulty to remember the name of everyday objects, and well know persons

   • Lasting usually 5 to 10 minutes

   • Happen once a week on average

4. Auditory agnosia: the inability to distinguish between sounds from different sources and types, all sounds mix in a shapeless blob.

   • Lasting usually 1 minute

   • Happen between 2 and 10 times a day

5. Auditory hallucinations: hear sounds that do not exists, hear sounds with a kind of deep echo, hear all sounds as forming a single tune.

   • Lasting usually 1 minute

   • Happen between 2 and 10 times a day

   • Usually in combination with the agnosia

6. Auditory illusions: perception of increase and/or decrease of the intensity of sounds.

   • Lasting usually 1 minute

   • Happen between 2 and 10 times a day

   • Usually in combination with the agnosia

7. Temporal perception distortion: changes in the perception of time passing, a feeling of everything happening in slow motion

   • Lasting usually 1 minute

   • Happen between 2 and 10 times a day

   • Usually in combination with the agnosia

8. Déjà Vu o Jamais Vu: the feeling of never experienced a familiar situation before, or the feeling of had experienced an identical situation before.

   • Lasting usually 2 minutes

   • Happen between 2 and 5 times a week

   • Usually after an agnosia event

And then I concluded I have been epileptic since long before

The first time I had an aura was approximately in 1995. Back then every time I had an aura was triggered by listening to a song, always the same song. I guess with an equivalent mechanism to the flashing lights, but for me it was a song. Those first auras were only auditory hallucinations, never went past that and sometimes I would actually make them happen for fun.

How does this affect my daily life?

Living with Auras every day

My family, closest friends, closest coworkers know about my condition, not all of them understand all the details, but are use to the fact that in majority of cases waiting for a minute or two will allow me to come back.

But the second and third circle of coworkers don’t necessarily know about this, or haven’t seen it enough times to know that waiting is enough, so, depending on the combination of symptoms it can sometime pass without them realizing that something happened. A less easy situation is when at work, the symptoms happen during a work meeting, a video call, presentation, with more than one interlocutor, creating an uncomfortable situation for all.

The most uncomfortable situations are when the combination of symptoms includes for example aphasia, the inability to talk or understand, and I’m interacting with a stranger, given that they are completely unaware of my condition, and because is a non-common situation my usual strategies to go through the event are not useful, and the stranger has no idea of what’s happening or how to react.

Since with the medication prevents the full seizures, I don’t have anymore events where I’m unaware of my surroundings or what is happening I can go out, move around the city, work, with only the difficulties mentioned above.

Medication Side-Effects

If one looks for the list of known side effects of the medication one gets a list of 30 as with any other drug. But in reality this is the one hitting me with the current dosage:

• General inability to feel satisfaction

  • I craving for pizza, I order pizza, I eat pizza… I don’t feel like I had pizza, that craving is not satisfied, I’m not hungry anymore but I don’t feel like I had had pizza.

  • Unfortunately this is a almost-permanent feeling, and not only related to food.

I tried, with the doctor’s guidance, to increase the dosage, but I felt physically ill, so the amount of auras I have can’t come down.

Combination with other conditions

Growing up in Mexico in the 80s made me go through school without being diagnosed as dyslexic, to this day I can’t really read a novel or any long text for that matter. I have to think a lot to know left from right, I confuse similar words, and skip full words or sentences when reading, this is not a great combination with the aphasia and anomia.

Some people that know me well think I’m also neurodivergent, it seems I have a better chance to be actually multitasking than others, and in certain occasions I perform better if distracted. How I feel it is that in order to use 80% of my brain, the other 20% needs to be busy. I don’t know if this may be related with the epilepsy or not, and it’s more less irrelevant.

But the combination of the neurodivergence, the dyslexia and the epilepsy creates interesting situations.

Summary of my situation

1. I’m taking the maximum dosage suggested

2. The main side effect of the medication is a lack of satisfaction

3. The full seizures don’t happen anymore

4. The auras still happen and will still happen when interacting with both known people and strangers