"Epilepsy affects life greatly. Firstly, being isolated and not being able to live a ‘normal’ life is tough."
I was first diagnosed with epilepsy when I was 4 years old. Seizures began at a varied frequency, ranging from once a week to one every few months. It was originally photosensitive and provoked by irregular sleep patterns.
This was 30 years ago, so medical knowledge has progressed since then. I started, and continued to have, CT scans and MRI scans. Along with this was EEG tests. They were the worst in my eyes as when they carried out the test they would use a strobe light and take you almost to the point of having a seizure. This meant I didn’t have a seizure but did have the aftereffects, such as needing to sleep for up to 2 days, severe vomiting, and horrendous migraines.
The medication was always trial-and-error. I would take meds then go back after a couple of months to retake the test again. I was put on a particular medication when I was 14 and had no further tests until May 2020.
My seizures came back much more frequently in May, meaning I had to have another EEG and medication change. I had 3 seizures in one day and I ended up in hospital due to a head injury. At all other times my epilepsy has been managed at home by my parents, and now my wife, so there was no need for trips to A&E.
I was too young to understand when I first received the news, but all through my youth I was terrified by my condition. My parents, however, were not overly shocked as my grandfather also suffered from epilepsy.
The upset got worse as I got older. The more I understood, and the more I didn’t have a normal life, the more terrified I was. I think hearing the news you have epilepsy is upsetting for everyone, but not remotely as bad as what you must experience as life goes on. Memory loss, concentration issues and depression commonly come with the condition. Not to mention the point in life where all your friends are going out and having fun, while you are stuck at home feeling very alone.
Epilepsy affects life greatly. Firstly, being isolated and not being able to live a ‘normal’ life is tough. The older I got the more troubles I’ve had with depression. Battling the everyday issues. My biggest problem is memory loss, mainly short term, which is worse when I’m tired and can cause many obstacles throughout each day. My concentration levels are low. All this is on top of the fatigue, which I experience daily.
These factors make everyday tasks much harder than for those without the condition. Finding a good career can be a challenge. I am a Master Technician for a Volvo dealership; gaining that qualification was very hard, let alone with memory and concentration issues.
It’s very difficult to get people to understand issues relating to epilepsy and because of this, you can become very isolated and alone. This can then increase depression and tiredness, thus worsening the memory. A very vicious circle.
"I was too young to understand when I first received the news, but all through my youth I was terrified by my condition."
The main thing I would say is routine, routine, routine. Look past the upset and disappointment of having epilepsy. Doctors should take their time and not rush into prescribing medication or full diagnosis; better to get it right first time. Families, however, can see seizure triggers first-hand, and build a routine to accommodate such as bedtime patterns, how waking up in the morning should happen, and things to avoid such as flashing images. You might also consider minimising caffeine intake. These are all easy points that will make things a lot easier to handle.
Keep up the good work! They are obviously working hard to find new treatments and gain a better understanding of the condition.
I think it’s important to find new medications and treatment options, but also just as important to help those with everyday obstacles. There is very little support for people and at no point have I ever been offered help with depression or memory loss. Epilepsy has very little presence on social media and this lack of visibility leaves people feeling very alone. It’s a truly unspoken illness.
I hope people become more aware of epilepsy. I’ve been involved in conversations where people have insisted that when someone is having a seizure, they should be held still to stop them from causing injury; as you know, this is the worst thing you can do. I believe it’s gaps in knowledge like this which are an issue. There also needs to be a greater social media presence and more offers of support and information. This would let people know they are not alone.
– Craig, February 2020