I’ve been asked several times recently, how does Epilepsy start. So I thought I’d share our experience today. If you read my blog regularly, you’ll know Sam was recently diagnosed with Epilepsy. A few people have asked me things like, “what triggered it” or “how does epilepsy start”, so today I am sharing our own experiences.

I’ve written before about the link between Autism and Epilepsy, so it was something I’d been bracing myself for. That said, Sam’s Epilepsy still shocked me. Read on to find out Sam’s answer to the question, how does epilepsy start?

How Does Epilepsy Start?

Before I continue, I want to reiterate that I am not a medical professional. This is just our family’s experience, not the science behind why some people develop Epilepsy. I will link to some resources to help answer the question, “how does epilepsy start” from a medical perspective as well.

Sam’s First “Epileptic Episode”

Back in July 2021, when Sam was 10 years and 1 month old, we spent a sunny day in the garden. Sam spent most of the day in his paddling pool with his sister, Syd. He drank plenty, had suncream on and was in the shade most of the day.

At around 6pm, he went to his bedroom. I went up to check on him shortly after and found him asleep in his bed. When I tried to wake him up, Sam seemed exhausted and kind of, “spaced out”. He sat up, vomited all over his bed then tried to lay back down.

Phoning 999

He drifted in and out of consciousness for the next hour, but couldn’t stay awake. I rang 999 and an Ambulance arrived almost 2 hours later.

They suspected an Epileptic Seizure so took us to the hospital. By the time we were seen (9 hours after the episode), Sam was back to his usual giddy self. The Doctor felt it was heatstroke and discharged him.

First Epileptic Seizure

Fast Forward to March 2022. Sam was 10 years and 9 months old. While in school, Sam had become upset and passed out at the dining table at lunchtime. They couldn’t rouse him, so rang me and suggested I take him to A&E. Sam vomited on the way to the hospital, and remained exhausted for 6 hours.

At this stage, the doctors weren’t sure if it was Epilepsy, his heart or something else, so they booked in a heart Echo and EEG via outpatients. Sam was back to “normal” within 6 hours of this episode. Honestly, I was still refusing to accept it was Epilepsy, and frantically googling things like, “how does Epilepsy start?“.

First Hospital Admission for Epilepsy

On Mother’s Day (27th March 2022), Sam was his usual self. I put him in his wheelchair and we went out to walk the dog at 4pm. His sister was with us too. After around 1/3 of a mile, Sam vomited all over himself. He was staring into space for around 2 minutes, then trying to go to sleep.

By the time I got him home, he was struggling to stay awake. I managed to get him into the house and remove his soiled clothes. Sam walked up the stairs and climbed into bed. He slept for around 15 minutes, then I woke him up so we could take his sister to their Dad’s house.

Cluster Seizures

On the way there, Sam went into another seizure. This time, his head turned to the left side, his eyes went to the left and he was drooling too. After around 5 minutes, Sam came round briefly. I was wondering how does Epilepsy start at this stage.

He then went into a 3rd seizure which lasted much longer. This time, we had to put him in the recovery position on the back seat of the car. After around 15 minutes, Sam came out of the seizure and went back to sleep. We drove straight to A&E, but Sam had another seizure as we got there.

Scary Experience

He was carried straight into Resus, where he was limp, non responsive, pale and had blue lips. 6 Doctors descended on him and got to work stabilising him. His ECG came back normal so we knew it wasn’t his heart, and was more than likely Epilepsy.

When in Resus, Sam had a cannula, ECG hook up, and oxygen mask on. He was unconscious. We were transferred to a side room on the Children’s Ward at this point. Around 40 minutes later (At around 7.40pm), Sam had a 5th seizure. The hospital staff finally administered rescue meds, to break the seizure cycle.

CT Scan

Sam was given a CT scan to rule out anything sinister at this point, which came back clear. Sam slept until 2am, when he woke up groggy, but aware of his surroundings. He removed the Cannula and ECG stickers.

We were discharged the next morning without a diagnosis or medication. Sam went back to hospital a few days later for his EEG. I’ll write a separate post on what this entailed, but it wasn’t fun for any of us. He had an Echocardiogram to rule out heart issues a few days later too.

Epilepsy Diagnosis

On the 6th April, Sam was formally diagnosed with Epilepsy. He was prescribed Lamotrigine and rescue meds. I’ve gone into detail about his Epilepsy meds in this post.

3 weeks later, Sam’s Epilepsy Care Plan was written with the help of his new Epilepsy Nurse. This document is given to school and his respite carer so they know what to do in the event of a seizure. I stopped wondering how does Epilepsy start at this stage, and instead focussed on how is it controlled.

One Month Later

Sam was diagnosed a month ago, and things have escalated pretty quickly. He’s had 4 more seizures since Mother’s Day, one of which involved me phoning 999. His meds still aren’t at the right level, but hopefully once they are, Sam’s seizures will be less frequent.

Ten Months Later

It’s Feb 2023 now, and I thought I’d add an update. Sam is now on 100mg Lamotrigine, twice a day.
We’ve not needed to administer his rescue medication or call 999 since May 2022. He’s still having occasional absences, which last for up to two minutes. He will sleep for around 1-3 hours after these, but bounces back pretty quickly.

They seem to be triggered by him being over-tired, or flashing light. (Sunshine and shade seem to trigger it).

If you’ve got any additional thoughts on how does epilepsy start, let me know in the comments.

Twenty Months Later

It’s December 2023 now, and I thought I’d update Sam’s current epilepsy status.
Sam’s been taking 150mg of Lamotrigine 2x a day (8am and 8pm) for a few months. I did Epilepsy training back in February and learnt it was critical to give medication at the same time every day. “Morning and evening” isn’t ok when it comes to Lamotrigine. Since we’ve been sticking to set times, Sam’s improved massively.

Sam’s still not needed his rescue meds since May 2022, and is now having the occasional small absence. He usually knows when they are coming and will put my hand to his tummy if I’m around, or take himself to a beanbag in school. He’s not had a full seizure in over a year – just small absences that last under a minute, usually. Sam will then sleep for 30-90 minutes, and be quiet for the rest of the day after these.

(They still seem to be triggered by tiredness, heat and flashing light – him deliberately moving from sun to shade, repetitively was a big issue over the summer, but has settled down massively in the last few months).

Sam’s 12.5 years old now. Weighs over 55kg and is around 5 foot 4, tall. He’s much more chilled out now, and far less aggressive than he was, pre epilepsy. This makes me wonder if he’d been having headaches beforehand, but couldn’t tell us. The behaviour change could also be thanks to the Lamotrigine, as it is also used to control low mood and bipolar.

Two Years Later

It’s April 2024 now. Puberty has kicked in, and Sam’s episodes have increased in frequency and severity. In the past 10 weeks, he’s had several frightening ones. One in the shower at home, one in the swimming pool with his carer, one in the shower at the swimming baths and another on the stairs at home.

The one on the stairs lasted 6 minutes and he should really have had rescue meds and gone to A&E, but because of where he was, it wasn’t safe for me to leave him to get the medication or call 999. When he eventually came round, I spoke to his paediatrician who increased his medication to 200mg of Lamotrigine, twice a day.

He’s had lots of small absences as well, which last under 3 minutes. Thankfully he came out of them all without needing rescue meds, but we are now on standby, waiting for things to progress “enough” to warrant adding a second epilepsy medication to his daily dosage, or consider changing his medication to a different one.

If you’re struggling with a new Epilepsy diagnosis or wondering how does epilepsy start, feel free to follow me on Instagram. I share a lot of our epilepsy journey via insta stories. Say hello & I’ll be sure to follow back.

I’ll update this post again in the future, but I hope this update provides some hope that Epilepsy can be controlled, if you’re currently wondering how does Epilepsy start?

26 Months Later

Since my last update, Sam’s epilepsy has remained uncontrolled. He had an EEG last month, which was much easier than last time. That showed Sam’s epilepsy is still very much focal. (This means it originates from one part of the brain, which is why he doesn’t have drop seizures – his start as absences and progress the longer he’s in them).

Sam also went into an absence during the flashing light test, so we know for sure that’s a trigger now. Due to this, is meds were changed again. Sam’s now having 225mg Lamotrigine at 8am and 8pm, as well as 2.5mg Clobazam at the same times. The Clobazam has added constipation to Sam’s side effects, which he’s really struggled with. He’s now having 2x adult Movicol sachets a day rot stop that.

We went on holiday last week, and Sam had 4 epileptic episodes during our 4 night break. Excitement and sleep deprivation seemed to be the biggest triggers, but it was really hard to see him struggle so much. Holidays are usually Sam’s happy place.

Sam’s growing really quickly. He turned 13 yesterday and is now just over 60kg – this means he’s gained 5kg/11lb in 6 months.
We are now awaiting a Neurologist referral, and we are scheduled to see the Epilepsy Nurse at the end of June. I don’t find myself asking how does Epilepsy start any more, instead I google how to control it.