Uncovering the Mystery of Epilepsy

When you think of epilepsy, images of someone having a convulsive seizure probably come to mind. While this is one of the more serious types of seizures that can occur with the condition, there are many more that are lesser known and noticeable.

Around 250,000 people in Australia are living with epilepsy at the moment, which equates to more than 1% of the population and about 3 in every 100 people. The condition is more common than cerebral palsy, Parkinson’s disease, multiple sclerosis and muscular dystrophy combined.

That’s why this month, we’re looking in greater detail at what epilepsy is and if you’re diagnosed with it, how you can live and thrive alongside the condition.

In this article, you will learn:

What is epilepsy?
What causes epilepsy?
What types of epilepsy are there?
How is epilepsy diagnosed?
What treatments are available for epilepsy?
What can you do to live alongside epilepsy?

Let’s dive in.

What is epilepsy?

Epilepsy is a disorder that affects the electrical activity of the central nervous system. Your brain usually operates by sending regular electrical impulses between neurons, which carry messages from the brain to the body and vice versa.

When someone has an epileptic seizure, these electrical impulses fire much more rapidly and cause different bodily reactions depending on the type of seizure. Reactions can include changes in your emotions, sensations, awareness, movements and behaviour.

Anyone can develop epilepsy although it usually comes on in childhood or the later years of life. Some children outgrow it, but for some, it stays with them for life and needs ongoing medication management.

What causes epilepsy?

About half of all cases of epilepsy have no known cause. Other causal factors can include genetics, brain or head trauma, stroke, brain abnormalities like a tumour, brain diseases like Alzheimer’s, infections like meningitis, HIV, viral encephalitis and some parasitic infections, prenatal injury due to poor nutrition, a lack of oxygen or an infection in the mother, developmental disorders like autism spectrum disorder, chronic use of alcohol and drugs, and biochemical imbalances.

What types of epilepsy are there?

 The type of epilepsy is determined by where in the brain the seizure starts, and then by whether a person is aware during the seizure, and whether it affects motor functions.

There are two main groups of seizures: focal onset and generalised onset. A third group, unknown onset, is a placeholder name when the diagnosis is not yet clear.

Focal onset seizures

These seizures start in one part of the brain and may spread to others to cause more severe symptoms or stay localised. They can either be focal aware or focal impaired awareness.

The difference is that with focal aware, the person knows what’s happening around them even if they can’t talk or respond. With focal impaired awareness, they don’t know what’s happening during the seizure and may be confused or disoriented after the seizure.

Focal aware seizures might change emotions, how things look, smell, taste, feel or sound, and may include tingling, dizziness, and a body part giving involuntary jerks.

Focal impaired awareness seizures can cause the person to stare off into space, be unaware of what’s happening around them and make repetitive movements.

Generalised onset seizures

These seizures start in both hemispheres of the brain and usually affect awareness or consciousness. They can either be motor or non-motor seizures, referring to whether or not they affect the body’s movements.

Generalised motor seizures can cause stiffening (tonic), jerking (clonic) or a combination of both (tonic-clonic). Generalised non-motor seizures affect awareness and can involve some repeated automatic movements, such as lip-smacking.

Types of generalised onset seizures:

• Absence – Short bouts of staring into space, with or without subtle movements.
• Tonic – This affects the tone of the muscles and causes short spells of stiffening of the legs, arms or body.
• Atonic – This has the opposite effect of tonic seizures and the muscle tone becomes slack, so a person will fall over if standing.
• Clonic – Repeated and rhythmic jerking movements, usually in the upper body.
• Myoclonic – Sudden single jerks or twitches, usually in the upper body.
• Tonic-clonic – This causes the body to stiffen in the tonic phase and then jerk in the clonic phase. The person may bite their tongue or cheek and can lose control of their bladder or bowel. This is the form of epilepsy that is most often portrayed in the media.

A note on absence seizures

These are far more common than people realise but because they don’t have the big physical reactions commonly seen in other seizures, they can be hard to detect.

The short but often frequent bouts of ‘staring into space’ or loss of concentration may seem small in nature but can have a profound impact on a person’s ability to interact with their environment.

When there is an electrical imbalance in the brain that reoccurs frequently, the ability to process information is impacted. People who experience absent seizures may find it difficult to follow instructions and sequences and learn new concepts. The result is that children may unfairly be labelled as ‘lazy’, ‘inattentive’, ‘poor listeners’ and might be described as ‘delayed learners’.

People with absence seizures may also struggle with friendships and socialising because they find it difficult to keep up with fast-moving or group conversations. They may miss vital information in conversations, resulting in them responding inappropriately or ‘missing the point’.

Because evidence of an absence seizure can be fleeting, diagnosis can prove to be difficult. However, once diagnosed, they can be managed effectively with medication.

How is epilepsy diagnosed?

Generally, having two unprovoked seizures at least 24 hours apart will be the starting point of diagnosis.

There are also procedures that are used to support this initial epilepsy diagnosis. A doctor would refer you to a neurologist who may do an EEG (electroencephalogram) to look at brain activity or use a form of neuroimaging such as MRIs and SPECT, PET and CT scans.

Doctors will look at your family medical history. If someone was present when you had your seizure, they will want to talk to this person to get a better understanding of what happened.

Doctors will also look at whether anything specific triggers the seizures. Some triggers can include a lack of sleep, stress, hormonal changes, illness and missed medication.

What treatments are available for epilepsy?

 The first line of treatment is medication to reduce or eliminate seizures. This usually involves a process of trial and error, where one medication is tried, and the dose is gradually increased until the seizures reduce or disappear.

If that medication does not work, another is added and the first one phased out. Some people with epilepsy are resistant to drug treatments.

Other options for treatment include surgery to remove where the seizures start in the brain, Vague Nerve Stimulation (VNS) where a pacemaker-like device helps stop seizures, Deep Brain Stimulation (DBS) and Responsive Neurostimulation (RNS).

What can you do to live alongside epilepsy?

 To start with, a good idea is to get a referral to an epilepsy centre where you can see an epileptologist. This is a neurologist with a specialisation in epilepsy. Outside of your treatment by your neurologist, there are things you can do to manage and live an active, happy, successful life alongside epilepsy.

Here are some ideas to help you in your day-to-day:

• Cut out caffeine and stimulants as much as possible as these can increase the risk of seizures.
• Avoid grapefruit and Seville oranges as these have been shown to affect how your body breaks down and absorbs some medications.
• The Ketogenic diet was initially developed for people with epilepsy to reduce seizures. Speak to your doctor about whether this or the less restrictive modified Atkins diet could help you.
• Fatigue or lack of sleep is often a trigger for a seizure, so be sure you get enough rest.
• Stress is also a trigger, so exercise, meditation or another form of stress control or relief can help to reduce seizures.
• Hormone fluctuations, particularly in women, can trigger seizures, so be sure to be consistent with your medication at certain times of the month.
• Keep a seizure diary to track how you’re responding to your medication.
• Seek professional support if you’re struggling with anxiety or depression as a result of your condition. Your therapist can help you learn coping techniques to get you through the bad days.
• Join a support group so you can talk to people who understand first-hand what you’re going through.

Important warning

If someone has been diagnosed with epilepsy, they should never be alone in water. Breakthrough seizures can occur at any time and therefore water and water sports can pose a serious threat to safety. It is strongly recommended that a dedicated spotter is nominated. Having a seizure in water is life threatening and can be avoided if those living with epilepsy do not swim alone and have spotters available to them.

First Aid for epileptic seizures

DO

1. Stay with the person at all times.
2. Time the seizure and record how long it lasted.
3. Do your best to protect them from injury.
4. When the seizure stops, roll them onto their side. If there is any fluid or food in their mouth, do this immediately so they don’t choke.
5. Monitor their breathing.
6. Give them calming reassurance after the seizure and try to ensure someone can go home with them.

DON’T

1. Put anything in their mouth.
2. Try to restrain them, as they may get stressed and you might hurt them or yourself.
3. Move them, except if they’re in danger.

For more information on how we can help you or your loved one, check out our range of services catering to people living with disabilities in the community.