Try to find out as much as you can about your condition so you can understand and learn how to manage it.
Knowledge can lessen anxiety and concerns by helping you feel more aware and in control. You will be able to take a more active role asking questions and discussing treatment options with your doctor.
A greater understanding of your condition can help you to identify possible seizure triggers. The correct information can dispel myths and make you feel more comfortable talking about epilepsy to others. By educating yourself, you can educate others.
Here are some tools to help you educate others about epilepsy:
During the process of acceptance of your diagnosis, you may not wish to immediately find out more about your epilepsy. It can be difficult to digest all the information provided while dealing with the news of your new diagnosis.
However, it is important that you have access to as much information and support about diagnosis and management of your seizures and you are able to absorb it in your own time. Once you have a good understanding of your diagnosis and associated symptoms, you are in a better position to feel empowered to take control over aspects of your epilepsy and necessary lifestyle changes.
What Information Is Needed?
It is important that any person with epilepsy (whether newly diagnosed or a long term) has current and relevant information about a broad range of things including:
- their type of epilepsy
- the possible effects of their seizures
- medications – effects, side effects and interactions
- psychosocial and social aspects
- lifestyle effects, including driving restrictions
- safety considerations
- first aid (for family and friends)
- useful services
- support groups
Things that can help people make informed choices are:
- Good knowledge and understanding about epilepsy
- Knowledge about any support services available
- Being aware of the right to choose or change doctor and seek second opinions should you wish
- Knowing you have the right to as much information about your diagnosis and treatment
- Awareness of possible consequences of treatments.
Because seizure triggers are very individual, it is important that each person is aware of their own triggers and has strategies to avoid or minimise them. Keeping a seizure diary can be one way to identify triggers.
The possible effects of seizures, not only includes the impact on relationships, lifestyle, work or risk of seizure related injuries, it also includes the risk of death associated with epilepsy.
Most people with epilepsy live full, active and healthy lives however, just like other chronic health conditions such as asthma and diabetes, seizures can occasionally have the potential to be life threatening. Sometimes the loss of life is due to seizure related drowning, accidents, injuries or the underlying cause for the epilepsy such as infections, brain tumours or stroke. Yet, a leading cause of epilepsy-related death is believed to be Sudden Unexpected Death in Epilepsy1 or SUDEP.
What is SUDEP?
‘SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found on autopsy.’1
It is estimate that 1 out of 1,000 people with epilepsy die from SUDEP each year. It occurs more often, but is not confined to, in people with frequent tonic clonic seizures and is rare in children, but can still happen. It is the leading cause of death in young adults with poorly controlled seizures.
How can it be prevented?
There are currently no known causes for SUDEP however research continues. Theories of the cause of death include seizure related irregular heart rhythm, impaired breathing or suffocation whilst in bed.
Trying to gain the best seizure control possible can reduce the risks.
Things you can do to lessen seizure frequency include:
- Taking epilepsy medications as prescribed, avoid missed doses
- Having your treatment reviewed regularly by your doctor if seizures continue
- Tracking your seizures in your epilepsy diary
- Identifying and avoiding your seizure triggers
- Avoiding drinking too much alcohol or using recreational drugs
- Leading a healthy lifestyle
- Talking to your doctor to understand your risk and make a plan.