A warning: This is going to include some slightly graphic descriptions, so if you don’t like blood, maybe skip it.
What to do if someone has a seizure.
My First Seizure Was Unprovoked and Unexpected
A little over a month ago, I woke up on the ground bleeding from my head.
But I’ll back up first.
It was a lovely weekend here in the UK and I, my boyfriend, and his parents had gone for a day trip to the beach. We were walking through town and it was gorgeous — the sea was just to our left.
And then I woke up.
That transition may be jarring, but that’s exactly the sequence of events according to my memory. I was walking and then, suddenly, I just . . . wasn’t.
Initially, I remember coming to and thinking that I was waking up from a nap. I was laying on my side (the recovery position, I later realized) on a bright sunny day, and it wasn’t out of the norm for me to like a little snooze. Weird place to choose, though, I thought — my face was on asphalt. I must have been exhausted.
My first clue that something was wrong was that there were a few strange voices talking around me. As I opened my eyes, I assumed we had sat down for a picnic and made some new friends (which is kind of hilarious thinking back on how badly my brain was trying to rationalize things).
When I started to sit up, I remember people being concerned, but I still didn’t feel any pain at this point. A man I didn’t know was crouching in front of me and explained that he was a doctor and that I had had an incident. I later learned that he had been biking past when this whole thing happened, so that was fortunate.
I think it clicked for me why people were concerned when I looked at the asphalt next to me and clocked the pool of blood there, where my head had been. I slowly put my hand to my head and when it came away bright red, my boyfriend said my eyes got wide.
Everything is a bit blurry, to be honest. My memory wasn’t the best following that time and I have to think hard to remember what happened.
The next bit I do remember clearly is my boyfriend’s mom sitting next to me. I looked at her and my boyfriend and asked what happened.
“You had a seizure,” she told me gently.
That didn’t track at all. At this point I assumed I had just fainted. I’d never had a seizure before, or anything like it. The only times I’ve lost consciousness before were during blood draws surrounded by nurses, and those were for just a few seconds. I kind of didn’t believe her. They must have been mistaken. I didn’t have seizures.
Meanwhile, someone had alerted the RNLI station nearby. RNLI stands for Royal National Lifeguard Institution, which is a charity that is run mostly by volunteers. They are kind of the equivalent of the US coastguard and save people at sea, so they are very well trained for emergencies. A couple of them came over and by this point, there was no shortage of first aid kits.
My Experience with A&E Following My First Seizure
While everyone fussed over a still very confused me, my boyfriend was pacing and on the phone with 999 — the UK’s version of 911 for the Americans reading this.
If you’re a fellow American, you probably also get a sinking feeling of dread when someone calls for an ambulance. Even though ambulance rides are free in the UK thanks to the NHS, that mentality was still alive and well. (I will note that as a non-British resident I have paid my NHS dues — but those were negligible compared to what this whole episode would have cost me back home.)
I was worried, yes, but didn’t exactly understand how serious things were. In a way, I think I’m the luckier one because I didn’t have to witness what must have been a terrifying event for my boyfriend and his parents. Regardless, I immediately felt like calling 999 was overkill.
The ambulance came pretty quickly, which with current NHS wait times felt a bit surprising and emphasized the urgency of the whole thing.
Later on when speaking to the paramedics (Hi John! Hi Phil!) we learned that since I had both a seizure and a head wound, it was important to establish which one came first. You can probably guess that seizure after head wound is the worse option. Luckily, we were pretty sure that’s not what happened.
This is when we got a first look at what was actually going on under my hair. After I had been given a tube of laughing gas to hang on to (bless), they sorted through the bloody mess and cleaned up the cut the best they could. It was 8cm and would later require stitches.
I asked them to tell me how bad it was, and specified that I wanted an honest answer. One of them replied: “Honestly? I can see your skull.” That’s the kind of British candour I appreciate.
Complicating matters is the fact that I have some pretty bad motion sickness, and the ambulance had to take a ferry (yes, a ferry — apparently the NHS has to buy out all the tickets when they use it and they also get priority over the regular traffic in emergencies, which I thought was an interesting-if-not-so-fun fact), which meant I, facing backwards and unable to see much of the outside, vomited a few times. We were fairly certain it was just me being me, but vomiting can be a really bad sign after a head wound.
We got to the hospital and waited for 5 hours. The NHS overload is no joke, y’all. Once an ambulance gets a patient, that crew cannot leave them until they are seen in the emergency room, which meant we hung out with John and Phil for a while. I felt incredibly guilty — even though I was hooked up to everything there on the gurney, and definitely needed to be monitored, I wanted them to be able to just drop me off at the A&E waiting room and go on another call. It felt like I was wasting resources that could have been used elsewhere.
Luckily my CT scan was fine, and so were my blood results, besides a few common vegan issues. A kind nurse brought me toast and hunted down a non-dairy spread, which was much appreciated. I made eye contact with a couple of older patients also in A&E and became very conscious of the fact that there was dried blood all over the side of my face and neck. I felt like an extra in an apocalypse film.
Then I got my head all stitched up, which was horrifying despite the anesthetic. It’s actually really interesting how the scalp heals — you obviously can’t dress it (because hair — and I honestly thought they were going to shave it) but it turns out head wounds will heal a lot faster than other places on the body. There’s also the added bonus of not being concerned with the cosmetics of it.
I was next referred to the First Fit Clinic (which I think sounds particularly British, in a sweet way) which is for — you guessed it — people who have their first seizure. That entailed a few weeks of waiting — I’m more than a month out now and I still have doctor appointments and tests on the calendar.
Once that was done, we finally got to go home, where I was able to do everything except actually bathe in an attempt to get the blood out of my hair. (An absolute nightmare.)
Unprovoked Seizures Are Extremely Common
Before my first seizure happened, I didn’t know how shockingly common seizures are. One in ten people are expected to have at least one seizure in their lifetime, which blows me away. In exchanging emails with one of my old doctors in the States, he told me, “In a lot of cases, there is no cause found, so everyone is allowed one seizure, as funny as that may sound, before doctors start thinking it may be epilepsy.” So that’s great.
From the description of what happened, I had a tonic-clonic (formerly called a grand mal seizure*) seizure, which is the one everyone pictures when they think of a seizure. Basically, you lock up (and usually, as in my case, fall to the ground) and then have a series of convulsions. All of your muscles are tense, and because of this, I had trouble breathing during mine, which is also not unheard of. You don’t remember any of it — your memory of the event will be completely gone when you wake up.
The consensus seems to be that if I don’t have another seizure in the next six months, the likelihood of another drops dramatically. Since my first one, it’s been nagging at me every time I do something simple like go up the stairs (what if I have a seizure and fall down them?) and suspect it will continue to do so until I hit that six month mark.
I have been told multiple times to move things that might cause injury if I have another seizure, but I was around literally nothing the first time. The thing that hurt me was the ground.
After My Seizure
Now, I have a pretty dope Y-shaped scar on the left side of my head. It kind of looks like the Mercedes logo, actually. Luckily, it is covered by my hair, although I recently realized that hair won’t grow back over scar tissue, so it’s a little thinner than it used to be.
As someone who really likes to be in control of everything (a character flaw, I admit), this was and is scary. I hate not knowing what happened while I was out, and what caused it. My seizure has really messed up my sense of reality, in a way. I get anxious if I think about it too much.
This is an intensely personal story, but I want to share for a couple of reasons.
One — I would like to try and be more open about what is going on in my personal life, because that’s something I’m not very good at.
Two — I’ve spent an enormous amount of time online googling and searching for others who have had a similar experience, but despite this being a oddly common occurrence, not a lot of people have written their own accounts. So I’m writing this for the next girl who suddenly finds herself in A&E after a first seizure and feels like an outlier because of her age and lack of history. You aren’t alone — this can happen.
If you’ve had a similar experience or advice, I would very much appreciate your comments below. If want more details or just to talk privately about my article, feel free to send me a private email. You can also contact me using the form found here.
Hoping I don’t have to write a part two,
*My Latin reminds me that mal means “bad or evil”, so “grand mal” basically means Really Bad and yeah, I have to agree. It did feel “really bad”!