Living with Epilepsy – Your Guide to Epilepsy Management

Epilepsy is a neurological condition that impacts how the brain functions. People with epilepsy have seizures which often come on suddenly and unpredictably. They can affect how a person lives their everyday life, and this can be difficult to come to terms with if you or someone close to you has recently been diagnosed. Although seizures can be dangerous, they can be controlled. With the right plan in place to treat epilepsy, epileptic patients can effectively manage their condition and live their lives with little disruption.

Dementech’s team of epilepsy specialists can help you understand epilepsy more and give you a better insight into how you can manage your condition in order to live a normal life. In this blog post, we’re going to discuss epilepsy in more detail and give you a broader understanding of how the condition can be controlled on a day-to-day basis to prevent seizures, allowing you to live a life that isn’t completely dominated by your diagnosis.

What is Epilepsy?

Cells in the brain are powered by electrical impulses. If there is a rapid burst of electrical impulses, this can temporarily affect how your brain functions and can cause a seizure. People with epilepsy frequently experience bursts of electrical activity which means they’re susceptible to having seizures. Anyone can have epilepsy, but it is mostly diagnosed in childhood or in people who are over the age of 60. It’s a life-long condition, but some people do improve over time.

Types of epilepsy

There are four main types of epilepsy, and each one affects the brain in a different way. The recognised types of epilepsy include:

  • Generalised epilepsy: This type of epilepsy causes seizures that begin on both sides of the brain, or seizures that spread quickly across the brain. Typically, patients with epilepsy of this kind will have generalised motor seizures or absence seizures.
  • Focal epilepsy: This type of epilepsy affects one area of the brain and can cause focal abnormalities. Sometimes the patient will know they’re having a seizure, and other times they won’t. Focal epilepsy can cause motor seizures, but it can also cause non-motor seizures that present themselves as feelings or sensations rather than movements.
  • Generalised and focal epilepsy: This type of epilepsy occurs when the patient has both focal and generalised epilepsy.
  • Unknown epilepsy: If you have unclear test results or can’t recall what happens when you have a seizure, you may be diagnosed with unknown epilepsy which means your doctors can’t establish whether it’s generalised, focal, or both.

Some people are diagnosed with an epilepsy syndrome which is a more specific diagnosis. Examples of epilepsy syndromes include Doose syndrome, West syndrome, and Rasmussen’s syndrome. Some epilepsy cases are also categorised as juvenile myoclonic epilepsy, refractory epilepsy or temporal lobe epilepsy. Our specialists will be able to assist you further in understanding the specifics of your condition. 

Symptoms of Epilepsy

There are many symptoms of epilepsy, and what one person experiences, another might not. This is because different parts of the brain can be affected by electrical bursts, and each part of the brain can respond differently to the bursts. So, depending on what area of the brain is impacted, the symptoms of epilepsy can vary, and therefore the treatment required to manage epilepsy can differ.

  • Some of the most common symptoms include:
  • Stiffening of the body
  • Convulsions (uncontrollable shaking and jerking)
  • Feelings of rising in the stomach and tingling in the arms and legs
  • Unusual tastes and smells
  • Losing consciousness
  • Becoming unaware and staring blankly

After a seizure, a person with epilepsy might feel tired, agitated, confused, and have memory loss. It’s important to note that a person who has a seizure might not necessarily have epilepsy. Many things can cause unprovoked seizures, with epilepsy being just one.

Causes of Epilepsy

For most people with epilepsy, there’s no definitive cause; however, it’s estimated that around one in three people with epilepsy have an epileptic family member, meaning it could be due to genetic factors affecting how the brain functions.

Some people are diagnosed with epilepsy after experiencing brain damage or trauma from events such as:

  • A serious injury to the head
  • An infection in the brain
  • Birth complications resulting in a lack of oxygen
  • Drug or alcohol abuse
  • A tumour in the brain
  • A stroke

For a lot of people with epilepsy, seizures are unpredictable and random, but some epileptics have specific triggers that can increase the risk of a seizure. Epileptic triggers may include:

  • Flashing lights
  • Consuming alcohol
  • Menstrual periods
  • Certain types of medication 

Types of Epileptic Seizures

Epilepsy affects people in different ways. There are several types of seizures that can influence the impact on a person’s life and how their epilepsy might be treated. They include:

Auras / simple partial focal seizures

Auras are sometimes referred to as warnings because they can be an indication that another seizure is going to happen. Auras don’t involve a loss of consciousness or awareness, but they can cause the following symptoms:

  • Indescribable, strange feelings
  • Rising sensation in the stomach
  • Déjà vu
  • Experiencing strange smells and tastes
  • Arms and legs tingling
  • Overwhelming feeling of happiness or fear
  • Twitching or stiffness in isolated areas of the body

Complex partial focal seizures

If you have complex partial seizures, you will be unresponsive, unaware of what’s going on, and you won’t remember what’s happened afterwards. You may also experience the following symptoms:

  • Lip-smacking
  • Making noises randomly
  • Moving your arms uncontrollably
  • Fidgeting and fiddling
  • Chewing or swallowing excessively
  • Rubbing your hands together

Generalised clonic tonic seizures

Tonic-clonic seizures are what most people associate with epilepsy. Formerly known as a ‘grand mal’, tonic-clonic seizures happen in two stages and they typically last a few minutes. In the first stage, you’ll become unconscious, stiff, and fall. In the second stage, your limbs will spasm and you might experience a loss of control of your bladder. You might also bite your tongue or cheeks, and you may find it hard to breathe.

Living with this type of seizure may mean you’re unable to drive or be alone until your epilepsy is effectively managed in case you hurt yourself whilst having a seizure. 


Absence seizures, formerly known as a ‘petit mal’, typically affect epileptic children, but sometimes they happen in adults. As the name suggests, absences make a person appear as if they’re absent. They may stare blankly, have slight limb spasms, and rapidly flutter their eyelids. They’re short (lasting 15 seconds or so) and can happen multiple times a day.

Due to the frequency of these seizures, they can be debilitating if untreated.

Myoclonic seizures

Myoclonic seizures typically happen when you wake up and are awake, and they usually last less than a second. They’re comparable to having an electric shock in the sense that your body will twitch in the same way as if you’ve been shocked.

Clonic seizures

Clonic seizures can cause you to go unconscious and involve your body spasming like in a tonic-clonic seizure, except you won’t go stiff.

Tonic seizures

Tonic seizures make your body go stiff which can cause you to fall over if you’re standing up.

Status epilepticus

If you have lots of seizures in a row and don’t regain consciousness in between, or if you have a seizure that lasts more than five minutes, you need to call 999 immediately.

How to Diagnose and Treat Epilepsy

If you have had a seizure, you should speak to your GP who will refer you to a specialist to determine what the cause is. Seizures don’t automatically mean you have epilepsy, but if you experience more than one seizure, a specialist may use an electroencephalogram (EEG) test to monitor brain activity. They may also suggest you have a brain scan so they can be sure you don’t have anything else that could be causing the seizures.

It can take time to diagnose epilepsy because symptoms mirror those of many other conditions, such as migraines or panic attacks. The more you can describe your seizures, or if someone else has seen you have a seizure and can accurately describe what happened, the quicker you may be diagnosed.

It’s recommended that if you’re having undiagnosed and recurrent seizures, you don’t drive or operate heavy machinery until you’ve been referred to a specialist and had tests done. This is for your safety and the safety of others.

Management of Epilepsy

Due to the nature of seizures and how unpredictable they are, they can make it dangerous for you to do things like drive, cycle, or go outside alone. If you work around machinery or in a public environment, they can also make it difficult for you to do your job safely. For these reasons, living with epilepsy and suffering from repeated seizures can be incredibly difficult and can take a toll on your mental health, physical wellbeing, and overall quality of life.

The good news is that there are a range of treatment options that can help with the management of epilepsy. With the right treatment plan, you should find that your seizures become less frequent, and some people might even find that they stop having seizures altogether, resulting in complete seizure freedom.

Your specialist will be able to advise you on the best treatment option for the management of your epilepsy. Your treatment may include:

Anti-epileptic drugs (AEDs)

AEDs are the most widely-used form of epileptic treatment and can prevent further seizures, reduce their severity, or stop them completely. The success of antiepileptic drug treatment varies. Some patients with epilepsy find that antiepileptic drugs allow them to live seizure-free, whilst others might find that they have drug-resistant epilepsy. With this in mind, antiepileptic drugs are often used alongside other types of epilepsy treatment (such as vagus nerve stimulation) to decrease the likelihood of further seizures.

There are lots of different types of AEDs and there’s a good chance your epilepsy specialist might put you on new antiepileptic drugs if your current ones don’t treat seizures as well as they would like, but some can have unpleasant side effects that impact how you feel on a daily basis. If this is the case for you, make sure you speak to a GP because it might be that there is a better AED for you.

Brain surgery

Brain surgery isn’t suitable for every person with epilepsy, but if your epilepsy is caused by an area of the brain that can be safely removed without harming you, this could be a good option and will stop your seizures completely. To live a seizure-free life is the goal for all patients with epilepsy, and brain/epilepsy surgery could make this a reality.

The thought of epilepsy surgery can be daunting and there is a long recovery period, but your doctor will talk you through potential side effects and complications and weigh them up against the benefits of the surgery. If the risk of complications is low and the chances of living seizure-free are high, brain surgery could be the best option.

Avoiding triggers

Sometimes, specific things can trigger seizures. If you know the cause of your epileptic seizures, you can adjust your lifestyle to avoid triggers and reduce seizure frequency where possible. For example, you might not be able to go to concerts if flashing lights are your trigger for recurrent seizures. This can lead to feeling like you’re missing out on things, but there’s a chance that with the right medication, you might be able to regain control and lead a completely normal life that is mostly seizure-free.

Vagus nerve stimulation (VNS)

If you’re not a candidate for brain surgery and AEDs aren’t effective at managing your epilepsy and reducing seizure frequency, you may undergo vagus nerve stimulation. This involves a machine similar to a pace-maker being inserted into your chest. A wire connects the machine to the vagus nerve in your neck and sends electrical signals which can offset electrical bursts in your brain, with the aim being to reduce seizure frequency.

Vagus nerve stimulation isn’t effective at treating epilepsy on its own and is always used in conjunction with antiepileptic drugs; however, if it proves to be an effective way to control seizures, the dose of your AEDs may be reduced over time.

Ketogenic diet

A ketogenic diet may be used to treat epilepsy if you still have uncontrolled seizures despite being on anti-seizure medications. A ketogenic diet is high in fat. It’s thought that in order for the brain to create a seizure, it needs energy from glucose. By reducing glucose levels through a ketogenic diet, the brain has to get its energy from fat. This can be an effective epilepsy treatment; however, you will need to be closely monitored by a dietician to ensure you’re getting all the right nutrients.

Ketogenic diets are mainly used for children with epilepsy, but due to the lack of certain nutrients and vitamins, one of the adverse effects is stunted growth. For this reason, routine diet reviews and health checks will be carried out to ensure the epilepsy treatment isn’t causing any other health issues.

Support in Living with Epilepsy at Dementech

Epilepsy can take a huge toll on your life and you may have to undergo serious treatment procedures to get your seizures under control. At Dementech, we have a team of epilepsy specialists who can help diagnose your condition, identify potential triggers for you, and help you find the right way to manage your epilepsy. We can offer support and guidance to patients with epilepsy on living with the condition, and offer advice on how you can help to look after someone with epilepsy, including children.To find out more, book an appointment with one of our doctors today.