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What is epilepsy?
Epilepsy is a neurological condition that causes seizures. It can affect people of any age and can occur at any stage of life.
With around 1 in 100 people living with the condition, epilepsy is one of the most common neurological conditions in the world.
In the UK, there are over 600,000 people with an epilepsy diagnosis, and there are estimated to be 21 epilepsy-related deaths each week in the UK alone.
How is epilepsy caused?
Epilepsy is caused by electrical signals in the brain becoming mixed up, sometimes causing sudden bursts of electricity that bring on a seizure. However, it’s not entirely known what causes this brain mix up in the first instance. According to Epilepsy Research UK, 65 per cent of people living with epilepsy do not know what initially caused the condition.
One possible cause of epilepsy is a person’s genes. It is thought that around 1 in 3 people with epilepsy also have a family member with the condition.
In some cases, epilepsy can be caused by damage to the brain. For example, this might be caused by:
- A stroke
- A brain tumour
- A severe head injury
- Drug abuse or alcohol misuse
- A brain infection
- A lack of oxygen during birth
Epilepsy symptoms
According to the NHS, symptoms of epilepsy can include:
- Uncontrollable jerking and shaking, called a “fit”
- Losing awareness and staring blankly into space
- Becoming stiff
- Strange sensations, such as a “rising” feeling in the stomach, unusual smells or tastes, and a tingling feeling in your arms or legs
- Collapsing
People very rarely experience epilepsy in exactly the same way; some may experience all of the above symptoms, where others may just experience one or two.
If you experience any of the symptoms listed, you should book an appointment to see your doctor. They will aim to learn more about your symptoms and determine if there is a possibility that you have epilepsy.
Getting a diagnosis for epilepsy
Because epilepsy shares the same symptoms as other conditions, receiving a diagnosis can be a difficult process and in most cases, epilepsy will not be diagnosed until the person has had more than one seizure.
If you think you, or a loved one, may have epilepsy, you should first go to see your GP. They can give you further information about the condition, and they should refer you to see an epilepsy specialist. For adults this is a neurologist and for children this is a paediatrician.
Seizure diary
To help you receive a diagnosis, your GP or specialist may suggest you keep a seizure diary. In this diary you should document information about the symptoms you are experiencing.
This could include:
- Details about the type of seizure
- How long they last
- Potential triggers for your seizures
Following diagnosis, your specialist might also suggest you continue to keep a seizure diary to help with treatment. In this diary you can note any additional information such as any changes to your medication and any suspected side effects of that medication.
As well as keeping a diary, it can also help with diagnosis if you take somebody with you to your initial appointments who has witnessed the seizures. It’s likely that you’ll have limited recollection of exactly what happened before and during a seizure, and the account of another person who was present will help the specialist to better understand the nature of your seizures.
Videos can also help, but this can be quite intrusive. If you live alone, recordings will need to be set up in preparation for if a seizure occurs, and for other people, your partner, family or friends, for example, having the foresight to record your seizures can be a conflicting decision. If this is something you would like them to do, try to speak to them in advance and explain that it could help your diagnosis and future treatment.
Following initial appointments, you will likely be asked to undergo a range of tests.
These can include:
- Electroencephalogram (EEG)
- Magnetic resonance imaging (MRI) brain scan
- Electrocardiogram (ECG) and blood tests
What treatments are available for epilepsy?
Epilepsy treatments will be designed around the person’s specific condition. For most people, once a diagnosis is given, there will be a process of trialling different treatments and medications to see what works best.
Some people may need treatment for the rest of their lives, however if seizures stop over time it may be possible to stop medication/treatment. It might also be possible for a person to stop treatment or not take it up at all if they are able to spot their triggers and prevent fits from occurring.
Medicines
Medicines for epilepsy are called anti-epileptic drugs (AEDs). AEDs do not cure epilepsy, they stop seizures from happening by changing the levels of chemicals in the brain. This is the most common treatment for epilepsy and they are thought to successfully control seizures for around 7 out of 10 people. There are a range of options available.
Examples of AEDs include:
- Sodium valproate
- Carbamazepine
- Lamotrigine
- Levetiracetam
- Topiramate
AEDs can have a range of side effects, some more severe than others. For example, side effects can include:
- Drowsiness
- A lack of energy
- Agitation
- Headaches
- Uncontrollable shaking (also referred to as tremors)
- Hair loss or unwanted hair growth
- Swollen gums
- Rashes (this could be a severe reaction to medication, so if you see a rash you should contact your doctor immediately)
If you think medication could work for you, you should discuss the different options with your GP or the epilepsy specialist. They will be able to talk you through the most suitable options, considering the nature of your condition, as well as personal factors such as your age and your current life plans. For example, some medications aren’t suitable to take during pregnancy, so if you are thinking of having a baby, you will be given alternative options.
Any medication should be taken in accordance with guidelines stated by the doctor or specialist, this will help to avoid any negative side effects.
Surgery
If AEDs are not successfully controlling seizures (known as drug-resistant epilepsy), it may be possible to undergo surgery.
To confirm whether you are eligible for surgery, you will need to undergo a number of tests including:
- Brain scans
- An electroencephalogram (EEG) – a test of your brain’s electrical activity
- Tests of your memory, learning abilities and mental health
The aim of surgery is to improve your quality of life by either stopping the seizures altogether, reducing them, or lessening the severity of the seizures.
The surgery consists of the removal of a small part of the brain that is causing the seizures. There are a number of risks to having the surgery, including memory problems and mood swings. These should all be discussed with you beforehand, and you can use this information to help you make a decision.
Keto diet
A ketogenic diet (also known as the keto diet) is a high-fat, low carb diet that is linked with helping to control epileptic seizures.
In a keto diet, around 90 per cent of calories should come from fat rather than carbohydrates. This is usually at a ratio of 4 grams of fat to every 1 gram of carbohydrates and protein.
It is a complicated process, and should only be undertaken with help from a dietician who will provide information about what foods can be eaten as well as monitoring nutrition.
If recommended at all, the keto diet is most commonly suggested for children who have not responded to previous seizure medicines. It tends not to be recommended for adults, as the restrictions make it difficult to stick to in the longer term.
Alternative procedures
There are also a number of procedures that can be carried out if medication or surgery is not the best option for you.
These can include:
- Vagus nerve stimulation (VNS)
- Deep brain stimulation (DBS)
These procedures won’t work for everyone. You should carry out your own research to learn about the different procedures and if you think they might be suitable for you.
Living with epilepsy
Finding the right treatment for your epilepsy can make it possible to live a normal, happy life. To help increase the success of treatments, there are also things that you can do to help keep on top of your condition.
For example:
- Continue to keep a diary – This was mentioned previously to help with diagnosis, but it can be useful in the long term too. If treatment isn’t preventing seizures altogether, documenting the details of your seizures will help you to identify any changes or worsening of your condition, as well as anything that might have led to this happening (triggers).
- Have regular reviews – Book regular appointments to see your doctor or specialist to discuss how you are and any changes to your condition. They can help to identify things like required changes to your medication, or any additional/alternative treatments that could help.
- Manage your general wellbeing – It may be the oldest trick in the book, but living as healthy a life as possible can help to reduce the number of seizures you have and keep on top of your condition in general. Consider your mental wellbeing (stress levels, tiredness, etc.), as well as your physical wellbeing by trying to exercise regularly and eat a balanced diet.
Gina’s Story
Gina is a hair stylist, artist and author from Plymouth. Before having her son in 2014, she had no signs of epilepsy but after giving birth, she began to have small partial awareness seizures which neurologists put down to hormone changes and a severe lack of sleep.
Gina now takes anti-epileptic drugs to control her seizures, she is living a happy life and has even published a children’s book to raise awareness of the condition; ‘Mummy Sometimes Goes Funny’.
As well as her writing, Gina has taken to creating artwork, something she began when she took time out of her job as a hairstylist because of her epilepsy.
Speaking of her epilepsy, Gina says: “It’s easy to remain negative during hard times and let epilepsy rule you. I certainly did for a while. Then I started to do things that made me happy, changed my lifestyle, found fitness and changed my thoughts”.
Help and support
There is a fantastic range of resources curated by charities and organisations to offer support and guidance to those with epilepsy or their loved ones:
