In this blog, Senior Editor Tess talks about her experiences of epilepsy.
If you have a brain tumour, you may have epilepsy as a result of it. Other people with cancer may have epilepsy that's unrelated to their cancer. It’s estimated that 1 in 100 people have epilepsy (1%) and in half of the cases, the reason is unknown*.
I have epilepsy as a result of a type of benign brain tumour called a meningioma. I didn’t know much about epilepsy before I was diagnosed with it. I knew it caused seizures and I always thought that meant people dropped to the floor and had convulsions. I think that's a common misunderstanding about epilepsy. There are actually lots of different types of seizure, and they don’t all involve falling over or shaking. My seizures are called complex partial seizures. When I have one, I don’t look any different from usual, but I can’t respond or think clearly. I feel very confused and I usually don’t know where I am.
I don't get any warning before I have a seizure and each one lasts about five minutes. It’s quite alarming for people to see if they don't know I have epilepsy, because they don't understand what's happening. Although I feel lucky that I don't have the type of seizure that makes you lose consciousness and convulse (tonic-clonic seizures), at least most people know what those are and might even know what they should do if someone has one. For me personally, I've let my friends and family know that if I have a seizure the best thing is for them to just to sit me down for a bit until I feel better. It takes me a while to fully come round. I feel very groggy and tired afterwards, and if I'm at home it's often easiest for me to go to sleep for a bit.
There are lots of anti-epileptic medicines (anti-convulsants) available, which can control seizures. In my experience, when you're diagnosed with epilepsy it can be quite a slow process to work with your doctor to find out which medicine and which dose is best for you. Some people just need one drug and others need to take a combination to control their epilepsy.
Until your seizures are under control, there are lots of ways that epilepsy affects your life. For many people, the biggest change is that they may not be allowed to drive. Luckily I didn’t have a car or drive often when I was diagnosed, but for other people this can have a huge impact on their life. If you have a driving licence and you're diagnosed with epilepsy or a brain tumour, you need to contact the Drivers and Vehicle Licensing Authority (DVLA) to tell them.
The most frustrating thing I've found about having epilepsy is that it can be unpredictable and nothing’s ever black or white. For example, my seizures were under control for over a year, then suddenly returned without explanation. Different people have different things that can trigger seizures, for example:
However, sometimes you have a seizure and can’t find any reason for it. This uncertainty can be difficult to live with, and it can be hard to feel confident in social situations or with people you don’t know well, in case you have a seizure without warning. I also find that my epilepsy is the most tangible reminder of my brain tumour. So when I have a seizure, it sometimes frightens me in case it’s a sign that the meningioma is growing or changing.
However, because epilepsy is a chronic condition, in my case it’s likely that I will have it for the rest of my life. So I try not to let it affect me too much. But for me, it's been important to find a balance between not worrying about it too much and still making good decisions that will help me avoid seizures (like taking medication on time and getting enough sleep). I also refer to Macmillan's information about brain tumours, which includes some about epilepsy.
And my biggest source of information and support specifically about epilepsy is Epilepsy Action. It has a helpline, where you can talk to really informative and reassuring people. I've also used its website to find information about all aspects of living with epilepsy, including:
So if you or someone you know has epilepsy, or if you just want to learn more about it, there's some really trustworthy and useful information out there.
References
*Purple Day. Supporting Epilepsy Around the World. www.purpleday.org
**Epilepsy Action. www.epilepsy.org.uk
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