Experience with seizures
I’ve been wanting to share my experience to see if anyone else has gone through something similar.
When I was only a day or two old in 2006, doctors thought I was having seizures, but they eventually called them “tics.”
Fast forward to sometime in late 2021, I started having intense feelings of familiarity (déjà vu). It would feel like I had already lived through a moment before, even though I couldn’t remember when or how.
Then, sometime between January and May of 2022, I had my first shaking episode. I was sitting on the floor in my room, completely awake and aware. I put my phone down, and suddenly my left arm started shaking on its own for about 30 seconds to a minute. I never lost consciousness, and I remember thinking, “Why is this happening?” It stopped on its own. I had a few more episodes after that, but I don’t remember the exact dates.
On April 26, 2022, while walking outside, I suddenly smelled something like metal or blood, but nothing happened afterward.
Then on December 8, 2022, I had another episode while I was in class. My head turned to the right, and I started shaking. I remember thinking, “This feels familiar,” because it reminded me of what had happened earlier that year, even though I couldn’t fully put my finger on it. My teacher stopped teaching and came over to check on me because she thought I was having a seizure. At that time, I honestly thought seizures only meant someone lost consciousness. I didn’t realize there were different types.
On January 24, 2023, I developed a severe headache on the right side of my head, and I also had another seizure that same day. After that, my episodes became much more frequent.
On August 16, 2024, I had such a severe headache that I was life-flighted to the hospital. Thankfully, I recovered, but it was one of the scariest experiences I’ve had.
Over the years, my symptoms have included:
Recurrent déjà vu.
Right-sided headaches.
Flashing lights in my left eye.
Left arm shaking while remaining aware.
A strange metallic or blood-like smell, usually through my left nostril.
A rising sensation that travels through my body.
Speech difficulties during some episodes.
More recently, I’ve also started having strange episodes while waking from afternoon naps. I’ll wake up in an in-between state where I can hear—and sometimes see—what’s going on around me, but I get an overwhelming feeling that something bad is about to happen or that something is approaching me. Sometimes my left arm will slowly reach outward, and my left eye will scan around the room on its own. The feeling usually lasts anywhere from a few seconds to about a minute before I fall right back asleep. When I wake up later, I barely remember it.
I’ve had multiple EEGs, an MRI, and even a three-day EEG where I experienced shaking episodes, but nothing abnormal was captured. At one point, I was told these episodes were psychogenic or “all in my head,” but they have continued for years.
One thing I found interesting is that I took Depakote (valproic acid) 500 mg daily from November 12, 2025, through December 11, 2025. While I was taking it, my episodes stopped. About five days after I ran out of the medication, around December 16, 2025, the episodes started happening again. I don’t know what that means, but I thought it was worth mentioning.
I also have high blood pressure, although I’m not sure if it’s related.
I’m scheduled to see an adult neurologist on July 8, and I’m hoping to finally get some answers.
Has anyone else experienced warning signs like déjà vu, strange smells, rising sensations, or episodes where they stayed aware during the event? Were your symptoms ever dismissed as psychogenic or non-epileptic before you eventually got a different explanation? I’d really appreciate hearing your experiences while I wait for my appointment.