Tonic-clonic seizures (a.k.a grand mal or generalised seizures) are awful and there is no getting used to them. You lose consciousness, fall to the floor and convulse. In my case, like many others, there is no warning and no identifiable trigger. It can be hard for people who haven’t experienced a seizure to really empathise with someone who lives with epilepsy. Far too often people who suffer from epileptic seizures are viewed with pity (most people are unaware they do this). Which is why I am sharing the details of my most recent seizure, one of the most difficult posts I have written so far. I hope in reading this, awareness is spread and pity turns into compassion.
There is no consistency to epilepsy, meaning you can’t prepare for a tonic-clonic seizure
Epilepsy is different for everyone, there is very little consistency. An aura is a sensation that some people get which warns them a seizure is coming on. With this warning, they have the opportunity to put themselves out of harm’s way or take emergency medication. But this isn’t the case for everyone, myself included.
Unfortunately, I don’t get pre-seizure auras and I’ve never experienced one in my 7 years of living with epilepsy. Those who have auras say they can be dreadful. Yet I would still rather experience an aura and give myself a chance to minimise any injuries.
To best explain how it feels to have a seizure, I’ll walk you through my last tonic clonic seizure. Or what I remember at least.
It was just your standard morning, nothing special. The only difference was that I headed downstairs to make a coffee earlier than usual.
The last thing I remember (pre-seizure) is making my coffee. The next thing I remember is being back in bed with my boyfriend explaining that I’d had a seizure.
Finding out that you’ve had a seizure is so devastating and frustrating. This only adds to the distress and confusion that come with waking up after a seizure. Not forgetting drifting in and out of conscious, all lasting a minimum of 15 minutes. Somewhere in the midst of all this, I become extremely distressed. I don’t have a clue at what point this kicks in, but it’s no surprise this happens. Having a generalized seizure means that your brain experiences a surge of electrical activity and there are many different types. With tonic-clonic ( or grand mal) seizures, the surge of electrical activity reaches your whole brain. Considering this, slipping in and out of consciousness makes sense. So does waking up in distress and generally a complete mess.
This time around, the absence of an aura meant I fell straight onto my cold tiled kitchen floor. As expected, tonic-clonic seizures can cause injury depending on how you fall, this time it further added to a shoulder injury.
Despite unfortunately having another tonic-clonic seizure, I still feel extremely lucky that I wasn’t alone. I’ve had a seizure alone in the past and it was one of the worst experiences of my life. If my epilepsy had appeared just a couple of minutes later, I would’ve been alone. I count myself lucky this didn’t happen and that I didn’t have to spend the rest of the day alone.
Recovering from a tonic-clonic seizure
I suffered from fatigue for the following 2 weeks and I was ready for bed at about 8pm. Tonic-clonic seizures, as you might have noticed, are very exhausting, both physically and mentally. Being this tired can impact your mood and it impacts me a lot. For 2 weeks I wasn’t myself all thanks to a seizure that lasted only a couple of minutes.
I needed to rest, a lot. Sleep is key but so is relaxing in general. For me, life tends to slow down. I took time off work and all my efforts into my extra projects, including my blog, stopped. Pausing work on my projects outside work wasn’t an active decision, I just didn’t have the energy.
I got back on my feet by spending a lot of time in bed and showing compassion to myself. I felt whatever emotions come up without judgement. Being kind to yourself doesn’t always come naturally, but when you live with epilepsy, it’s a very important skill to learn.
Yet epilepsy in some ways teaches me life lessons. Take what you need, let your emotions out, do something you enjoy or anything else that will help you recoup. There is no set guidance to get back to normal, other than doing what works best for you.
There’s more to epilepsy than seizures
Oh how I wish epilepsy was just a seizure with no strings attached, but it isn’t. The reality is that it creeps into daily life in one way or another. It’s like a dark shadow that never leaves.
Physical injuries go hand in hand with tonic-clonic seizures. In my case, I get physical injuries every single time. A common injury is biting your tongue, but this hasn’t been as bad for me lately. What I can guarantee is being covered in bruises and my shoulder(s) partially dislocating. This partial dislocation is better known as shoulder subluxation, which has developed into chronic shoulder instability. After my latest tonic-clonic seizure, both of my shoulders were out of their socket when I woke up. Reading this might make you cringe, but that’s part of my reality living with epilepsy. It’s my reality of suffering a tonic-clonic seizure.
Thanks to epilepsy, I deal with chronic shoulder instability daily. Morning stretches are a no go and I have to be careful doing normal things like getting dressed, putting my seatbelt on in the car and how I shut doors behind me.
Speaking of cars, I’m not allowed to drive. This means I always have to make my way around on public transport or fork out for taxis – even though I passed my driving test in 2017.
My job choice is also limited. I did want to travel the world as an air hostess, but there’s no chance in hell I’d pass the physical. I also have to consider how a job that allows me to see the world would disrupt my sleep pattern. Sleeping patterns are incredibly important if you live with epilepsy. I’m now very mindful of mine and I’m constantly watching the clock as socialising creeps past the evening.
Epileptic seizures disrupt your mental health
Living with a chronic illness can be challenging for many reasons. One of them can be how it impacts your mental health. As much as I try to find the positives of living with epilepsy, it can still be very difficult at times. Despite the ups and downs, it’s reassuring knowing there’s a possibility that my last seizure, could quite literally be my last ever tonic clonic seizure. It isn’t that likely, but I still hold out hope.
Most of the time epilepsy doesn’t impact my mental health, but that’s not to say I don’t struggle with it. In 2019 I went through a really rough period which was mostly a result of a seizure I had alone. Talking to the people in my life wasn’t helping, so I went to counselling.
Counselling is great and after going to sessions myself, I think everyone should go to counselling. It armed me with the tools to look after my mental health, which I still use today. Sadly, counselling is not always accessible to everyone. The NHS is stretched, waiting lists for counselling are too long and private counselling isn’t cheap. If you’re struggling with mental health (epilepsy-related or not), take a look at these links for free help and support:
- The Mix – If you’re under 25 fill out this form on their website to access support within 24 hours
- Epilepsy Action wellbeing courses. I’ve recently come across the Epilepsy and Your Wellbeing and Epilepsy and You courses. I haven’t completed them myself yet, but they’ve been added to my to-do list. I’ll let you all know how it goes!
- NHS and NHS mental health referral
If talking to loved ones or seeking help in other ways isn’t working for you, there are also online communities. There are so many epilepsy-related communities online for support. You can find them on Facebook, Instagram or any sort of support forums. With plenty of people trying to find the funnier side to their epilepsy, online communities can really help to cheer you up. I’ve really found the benefit of speaking to people that completely understand what you’re going through.
Seizure free days are a blessing
Like many people with epilepsy, I keep count of my consecutive seizure-free days. It’s so encouraging as your seizure-free time increases, but also very disappointing when it resets to zero. Even if I’m disappointed when the counting is reset to 0, every single day without a seizure is a win.
Life with epilepsy really is a journey and we can never know how an individual’s epilepsy will change. You’ve just got to roll with it and work with your doctors to control your seizures in the best way possible.
It can sometimes feel like your body is betraying you when you have a seizure, especially a tonic-clonic seizure. It’s frustrating. In my opinion, the best thing you can do is have compassion for yourself. You might get fed up and annoyed at the seizures themselves, but be kind to your body – it’s your home.
Don’t forget, you are not your epilepsy. It might break us down a little, but we can rebuild ourselves stronger than ever. If you can handle life with epilepsy, there’s no doubt that you can take on the world.