Epilepsy Support: Diagnosis, Treatment, and NDIS Funding

Epilepsy is a brain condition that causes seizures and can negatively impact a person’s quality of life. However, with diagnosis, prevention strategies and treatment, epileptic seizures can be managed and even eliminated. If you are a person living with epilepsy who requires additional support, you may be eligible for funding through the National Disability Insurance Scheme (NDIS). You can also access a range of disability support services with Homage.

What is Epilepsy?

Epilepsy is a long-term neurological condition that affects the nervous system and causes seizures in an individual. Seizures are sudden losses of consciousness or an altered level of consciousness during which a person may display abnormal movements and behaviours. Typically this presents as a stiffening and jerking of the arms and legs. Seizures are caused by rapid and uncoordinated electrical firing in the brain, when there is an interruption to the normal connections between the nerve cells in the brain.

Over 65 million people globally have epilepsy. It is the most common serious brain disorder in the world. In Australia, the number of people currently living with epilepsy is around 250,000, or about three in every hundred people. Up to 3 per cent of Australians will experience epilepsy at some point in their lives.

Symptoms of Epilepsy

The clearest symptom of epilepsy is seizures. Seizures can take many forms and vary widely between individuals, but most people with epilepsy will have the same type of seizure each time.

Signs and symptoms of a seizure include:

• Stiff muscles
• Uncontrollable jerking movements of the arms and legs
• Loss of consciousness
• Loss of awareness
• Temporary confusion
• Staring into space
• Tingling sensations
• Dizziness
• Repetitive movements such as chewing, swallowing or hand rubbing.

 There are two types of seizures associated with epilepsy: focal seizures and generalised seizures.

Focal Seizures

Focal seizures occur from abnormal activity that is localised in one area of the brain. 

In some cases, a focal seizure will not involve a loss of consciousness. This type of seizure does not present in the way that a layperson normally understands a seizure; the sufferer may not appear to have anything seriously wrong. They may experience sensory changes, or alterations in the way things look, smell, feel, taste and sound. They may have a sudden change in their emotional state. Other sensory symptoms include flashing lights, tingling and dizziness. Sometimes, one body part, such as an arm or leg, will jerk involuntarily. 

In other cases, people experiencing a focal seizure will have a loss of consciousness or awareness. This type of seizure is often described as being in a dreamlike state, where a person loses their sense of where they are. They may stare into space and be unable to respond to others. They could also perform repetitive movements.

Generalised Seizures

Generalised seizures involve all areas of the brain and will have more obvious symptoms associated with them. Generalised seizures are grouped into six types:

How is Epilepsy Diagnosed and Treated?

Diagnosis

Having a seizure does not make a person epileptic. However, if a person suffers from two or more unexplained seizures, they will typically be diagnosed with epilepsy.

When you are diagnosed with epilepsy, a doctor will normally ask you to provide a history of your seizures and describe any symptoms that accompanied them or what might have happened beforehand. It can be hard for someone who has experienced a seizure to remember details, so it can be helpful to have someone who witnessed the seizure come with you.

You will usually be asked to take a blood test to determine if your seizures could be caused by an infection, a genetic condition, or some other medical problem.

Sometimes doctors will use an EEG (electroencephalogram), CT scan and MRIs to help diagnose epilepsy. However, these results can appear normal even in a person who has epilepsy. 

Prevention

For people with epilepsy who suffer from seizures, they can be prevented by avoiding triggers that set off a seizure. Learning your individual triggers can take time and it’s important that when you do have a seizure, you take note of the circumstances so you can start to determine a pattern.

Some common triggers for a seizure in a person with epilepsy include:

• Stress
• Lack of sleep
• Alcohol or drug use
• Caffeine
• Allergies
• Being sick or having a fever
• Flashing lights
• Missing meals
• Hormonal fluctuations
• Menstruation. 

Treatment

Although there is no cure for epilepsy, it can be managed and controlled by using medication and avoiding triggers. Other treatment options are also being explored.

Most people will be prescribed antiepileptic medication that is tailored to their individual condition. Often, you will need to take blood tests regularly to make sure your levels are right for your needs, and that the medication is not causing other medical issues.

Antiepileptic medication is extremely successful at managing the condition, with most people becoming seizure-free by taking the right medication and dosage. Additionally, many people can discontinue medication after a few years and not experience seizures anymore. Always speak with your doctor before changing or stopping a prescribed medicine.

There are some common, mild side effects associated with antiepileptic medication. These can include fatigue, weight gain, memory problems and dizziness. In more serious cases, people can experience depression and suicidal thoughts. If you are experiencing side effects, speak with your doctor who can adjust your dose.

In some cases, surgery may be used to treat epilepsy. This is commonly only when medication fails to provide control over seizures. The surgery is designed to remove the area of the brain that is causing seizures, which can only be done if your seizures originate in a small and well-defined part of the brain. Surgery is not an option for people whose seizures begin in an area of the brain responsible for vital functions such as speech, language or motor skills.

Some of the alternative therapies used for treating epilepsy include vagus nerve stimulation and deep brain stimulation.

Vagus nerve stimulation involves the implantation of a device within the chest, which is connected to the vagus nerve in the neck. The device sends bursts of electricity through the vagus nerve to the brain and has been shown to reduce seizures by up to 40 per cent. It can be used in conjunction with medication for people who have not been able to control their seizures through antiepileptic medicine alone.

Deep brain stimulation involves surgically implanting electrodes into the thalamus, a small structure within the brain located just above the brain stem. Similarly to vagus nerve stimulation, the electrodes are connected to a generator in the chest which delivers electrical pulses.

In both these treatments, it is not fully understood how the stimulation controls epilepsy and reduces the rate of seizures.

Does the NDIS provide support for Epilepsy?

The NDIS (National Disability Insurance Scheme) is a federally funded program designed to support the 4.3 million Australians living with a disability. It connects people with support services and encourages all people to set goals for living a more independent life. Each person receiving funding through the NDIS will create an individualised plan to outline their goals and what kind of help and support they need.

The NDIS is available for people aged between 7 and 65, living in Australia as a citizen or permanent resident, who require some level of support due to a permanent and significant disability.

When applying for assistance through the NDIS, it’s important to provide supporting documentation on how the condition impacts daily activities. In order to be eligible for funding, applicants need to provide that their condition has a significant impact on their daily life.

You will be asked to provide information about your epilepsy, including how long you have had epilepsy, any treatment you are taking, and any other impairments you may have.

You can speak to your healthcare providers to help put together supporting documentation that will accompany your application. This includes a range of assessments used to determine the severity of your impairment, including a Care and Need Scale (CANS), information on the functional impact of your conditions on things like your mobility, communication and social interaction, and whether you need special equipment and assistive technology.

Supports available under the NDIS

The NDIS will allow people with epilepsy to develop a plan to manage their condition and meet their own individual goals. These goals could include things like getting a job, being involved in the community, or living alone independently. If you are living with epilepsy and qualify for the NDIS, your plan will need to identify the type of support you require. 

Some of the types of support offered through the NDIS for people with epilepsy include assistance with implementing an Epilepsy Management Plan, an Emergency Medication Management Plan, or epilepsy seizure monitoring.

An Epilepsy Management Plan (EMP) is a document that is used by people with epilepsy and the people involved in their life. It includes information on types of seizures, triggers, how the person with epilepsy would like to be supported during a seizure, and emergency procedures. The plan is usually shared with schools, employers, sporting and social clubs, and other people close to the person with epilepsy so that everyone is prepared for a seizure. The NDIS can provide a suitably qualified and competent worker to assist in the creation and implementation of this plan.

An Emergency Medication Management Plan (EMMP) describes the medication that the person with epilepsy is taking, the method of administration, dosage, and emergency procedures. It is usually reviewed annually, or whenever medication changes. The NDIS can also provide someone to assist in the creation and implementation of this plan.

If you’re a person living with epilepsy, you may also require additional equipment, aids and assistance. The NDIS can help with paying for things like epilepsy seizure monitoring using assistive technology. If you require a support worker to visit you at home or assist you in some daily activities (for example, travelling to a community centre), NDIS funding can also be used for this purpose.

How can Homage help?

Homage provides a range of disability support services, including services that can be used by people living with epilepsy. Our experienced Care Advisors can work with you to create a holistic care plan tailored to your needs and can arrange support services accordingly. From personal care and medical escorts to check-in visits and care through the night, the compassionate Care Professionals at Homage are equipped to provide the support and assistance you need to live your fullest life.

Epilepsy is a serious condition, but frequent seizures can be avoided with good management strategies. It is important that people suffering from seizures gain an epilepsy diagnosis and begin treatment as soon as possible. For additional support, they should check their eligibility for NDIS funding and utilise support services offered by Homage.