Extraordinary Links

Epilepsy Medications and Effects on Quality of Life

By Hannah White

What is Anti-Epileptic Medication?

Anti-epileptic medications (AEDs) are the most common type of epilepsy treatment. They work by altering the electrical activity in the brain. When someone takes AEDs, this is ultimately changing the chemical activity in the brain, which is why seizures occur in the first place. So by altering this and sending different messages to the brain, it aims to stop seizure activity.

There are a variety of AEDs which are used to control seizures, however, there isn’t a one size fits all. Meaning that just because you have tonic seizures, it won’t mean everyone will be treated with the same medication. AEDs are very much tailored to the person, and this is a decision made by your consultant or doctor and also factors in previous medical history as to which may be best for you.

The success rate for AEDs is high with about 7 out of 10 people finding that their seizures are under control after the use of them.

Different Types of AED

The common types of AEDs include:

  • Sodium valproate
  •  Carbamazepine
  • Lamotrigine
  • Levetiracetam
  • Topiramate
    However, there is an extensive list of AEDs, and as said previously you must always consult with whoever is in charge with your care to figure out what medication is the most appropriate for your seizure type, symptoms, and medical history.

Side Effects of AEDs

  • A lot of patients will face side effects when taking AEDs, this can vary from drowsiness to memory and concentration issues. If you need any further information on the side effects of medication,
  • Epilepsy.com
  • Epilepsysociety.org.uk
    As well as plenty of other resources online, which can guide you with all you need to know, ways to manage your epilepsy, and any risks there could be.
  • Epilepsy can be incredibly debilitating for many people, However, this can be especially difficult for young adults/ teenagers, whilst trying to tackle school as well as their own personal lives, the struggle of epilepsy too can be extremely scary and a lot to deal with. Below are a few examples of ways that a young adult’s quality of life may be affected.

Driving

  • Sadly for many young people with epilepsy, driving is not possible or even has never been an option for them.
  • The DVLA states that you must be seizure free for at least a year before you drive, and then whilst you are driving they should be controlled.
  • Not being able to drive is a huge removal of independence, and especially for those who live in smaller villages and need to get into work everyday and rely on a car. Sport and Exercise

Lifestyle

  • As sports can sometimes be a trigger to epilepsy, a lot of young people are told to reduce the amount of exercise they carry out, especially while they are new to the medication and getting used to it.
  •  Sport is a great way for people to escape the real world and can help a lot of people with mental health troubles and socialising

Avaliable Help

  • Those who have epilepsy may face troubles when it comes to social settings and meeting new people. This could be due to the uncertainty of the seizures and feeling embarrassed of a seizure coming on in front of people you don’t know.
  •  Luckily, there are a wide variety of support groups out there, like us Extraordinary Links, who are there to give young adults an outlet and feel like they can talk to people in a similar situation without any judgment.
  • Epilepsy Action has a host of different support groups around the UK, from virtual groups, which includes a discord server that allows you to talk to people either individually or in a group chat. To face-to-face groups, whichever you feel most comfortable with.
  • Talk and Local Support Groups
  • The website eqol has online support designed to support communication and provide resources to those struggling and living with epilepsy. Even though epilepsy can be tough, it is possible to live a normal life throughout.

Case Studies
Here are some stories from Epilepsy Action of young adults who have dealt with epilepsy for years and found it isn’t always a negative in their life. If you have time to read their whole stories I strongly advise you to, as they are very touching and important.

Tahlya’s story:
Tahlya was diagnosed with epilepsy at 10 years old, with generalised and tonic-clonic seizures. After 4 different medications, she is now on a medication that has controlled her epilepsy and has been seizure free for 3 years.
Although epilepsy had a major impact on her life, not only physically but mentally too, she has found it helped her to grow into a more confident person. Where she now is on social media helping others to love themselves and that your disability shouldn’t stop you from doing anything.
Tahlya was also a huge sport lover growing up, and found that she had to stop these whilst carrying out her GCSEs, however, she is now competitively pole vaulting and training 6 days a week, whilst also dancing, being a swim teacher and a gymnastics coach (WOW!).

Jay Bothroyd’s story:
Professional footballer Jay was diagnosed with epilepsy in his late teens, by which time he had already left home and was playing for Coventry. He has very occasional seizures, usually as a result of combining exhaustion, lack of sleep, missing meals, and drinking.
Jay explains how overdoing it tends to bring on his seizures, and as a result of this he now has a burn on his arm from a seizure in Portugal, after a long day training and going out afterwards, the following day he had a seizure and fell on a car in the heat.
Now having a family, he says he finds it hardest that they have to see him like this. One time, after another long day of training, they were all in a taxi and he had a seizure in front of his son, around 15 at the time and this made him very upset seeing his dad like this.

My Story:
My name is Hannah White, and I was diagnosed with absent seizures when I was 13 years old. Since primary school I had always been aware of them, however I was so young and could easily pass them off as being a “funny moment”, that until I was in drama class one day and asked to stand with my group, did it become apparent that something wasn’t right.
My seizures are triggered by standing up, or sudden movement, e.g. walking or running. However, due to them being absent seizures I was so used to my body and what would bring these on that I could mask them, in sports or in conversation. But it was such a relief when I finally spoke to someone about it and they understood me, although it did take a second opinion. Because I finally felt seen and as if I could stop pretending things were okay when realistically they weren’t.
This is me urging you to talk to someone if you feel something isn’t right, even with a family member or friend, if you suspect something is unusual and there are patterns. Please get them to talk to you or a medical professional, as this can be a huge burden on them and they are probably just as confused with what is going on.
I am currently taking Zonegran, and have been ever since I started medication and it has worked for me. I have been seizure free since I started the medication, and am able to live a very normal life which I am incredibly grateful for and have an amazing support system around me!

Although epilepsy can have a lot of effects on the quality of life of people living with it, with the help of medication and support groups, people are able to live closer to a normal life compared to those without medication as it helps to control their seizures, with the aim to become seizure free. If you need more help, please Contact US, and we will try and help you.