Hi OP,
I’m 40 and had my first seizure when I was 16. I was told it could be a one-off but sadly for me it wasn’t. I had another seizure 5 months later and that’s when they went down the route of investigating whether I had epilepsy.
I had 7 years of having tonic clonic seizures (usually having one every 3-4 months) but eventually the right medication and dosage was found for me and my seizures stopped when I was 23.
I then went on to create a ‘normal’ life for myself….. a professional job, a driving licence, marriage with two children, but then in 2019, after 14 years of being seizure free I had another tonic clonic seizure completely out the blue.
It turned my life upside down and my mental health really suffered because my ‘normal life’ was turned on its head. After 10 years of driving, losing my licence was such a hard pill to swallow, especially because I had young children (1 and 4) and I felt so trapped. I started suffering really badly with anxiety and I spent every day worried about whether I was going to have another seizure, it was awful.
Sadly, after 11 months of being seizure free, and just as I was about to get my licence back, I had another seizure.
To cut a long story short, the last two years in particular have been particularly rough and I now take anti-anxiety medication, I’ve done CBT and an interactive counselling course which focuses on managing anxiety when living with a long-term health condition. So please be reassured that the way you are feeling is such a normal reaction because mentally struggling with seizures is very, very common.
My last seizure was three months ago and I lost my licence again after a year of driving. Cruelly, the seizure happened on the 12 month anniversary of having my licence back.
As has been said, one in four people will have a seizure and never have another one so please, please hold on to that.
I wanted to come and tell you my story to show you how completely normal it is just have your mental health in tatters…. every single person with epilepsy, or those who’ve had the one-off seizures will have been through it. Having seizures is absolutely terrifying and I don’t think many people can understand how fearful it can make you for a very long time. I’m so sorry you had to go through what you did.
When I was having seizures between the ages of 16-23 I took them in my stride, but when they returned 14 years later my life crumbled and I felt heartbroken in a way I can’t even describe….which is probably how you feel. It’s like being in a state of shock.
I definitely found it harder to deal with as an adult then I did as a teenager.
Even if it does turn out to be epilepsy, over 70% of sufferers get their seizures controlled with the right medication so please hold on to that.
I could tell you to stay positive, but from someone whose had the feelings you are, I used to HATE it when people said that, it didn’t make me feel better at all. When someone is as nervous/scared as you are (understandably), and suffering badly with their mental health as a result, staying positive doesn’t really change any of those things.
I really hope that your investigations give you an answer and I really hope that it was a one-off and that you can try and rebuild yourself.
In the meantime it’s really important you find ways to try and keep yourself safe. I.e you have somewhere safe to put your child should you feel strange again, for example a play pen, so that if you do have another seizure they will be safe.
I also bought myself an SOS necklace which are fantastic as they can hold so much data that will be a massive help to people should you have a seizure whilst out and about, especially your emergency contact details. Again, it’s just an extra safety net if you are out with your child. My SOS necklace also came with a massive sticker that’s says “I wear an SOS talisman” and I have it stuck to the front of my purse. Generally, if you were to collapse in the street people/paramedics would be more likely to look for a purse to identify you as opposed to think the person may be wearing an SOS necklace, so that big sticker will make them realise you’re wearing one, and then they can get all the information they need regarding health details and emergency contact numbers.
For this reason though, it was very rare I went out with my children unless I had another adult with me….again it was just to ensure they were kept safe if I had a seizure outside as it meant someone was there to take care of them.
There’s not much we can do to keep ourselves and our children completely safe, it’s just a case of trying to reduce the risks.
Whatever the outcome of your tests, things will be okay xx