Self-management is when someone with a condition or disease takes an active role to help manage their own wellbeing. It includes learning about their condition, making healthy lifestyle choices and informed decisions about treatment, plus actively monitoring and managing their symptoms.
Here we have a number of practical tips that may help you take a bit more control.
Learn About Your Condition
Try to find out as much as you can about your type of epilepsy so you can understand and learn how to manage it. Your doctor should be able to give you a name.
- Knowledge can help you understand your epilepsy and reduce your concerns
- The more you understand, the more you will be able to take a more active role asking questions and discussing treatment options with your doctor
- It can also help you to identify your own seizure triggers or seizure patterns, which helps you to recognise and possibly avoid what may trigger your seizures
- The correct information can dispel myths and make you feel more comfortable talking about epilepsy to others if you wish to do so
- By educating yourself, you can educate others.
Take Your Medications as Prescribed
Medications don’t cure epilepsy, but they can control seizures. It is important to keep your medication blood levels consistent to keep seizures at bay, so following the regime the doctor prescribes is important.
If you have difficulty remembering to take medication:
- Make it part of a daily routine such as taking them at meal times
- Set your phone, watch or some type of alarm as a reminder
- Use a pillbox
- Place the medications in a visible position as a reminder
- Use a chart or calendar and tick when the dose is taken
- Ask someone in the household to remind you.
If your seizures are not responding to a medication or you are experiencing unwanted side effects, speak to your doctor about a review.
Check Before Taking Other Medications or Supplements
Other medications, including over-the-counter medications, may react with antiseizure medication – either increasing the risk of seizures or medication side effects
If you see more than one doctor it is important they know all the medications you are taking. This may affect what they prescribe or the dose they prescribe.
Many people believe that alternative or complementary therapies are safe because they are derived from natural sources, but just like medication, these therapies have effects and side effects. The same goes for over-the-counter medications.
Speak to the doctor before starting any complementary therapies; herbal medicines, homoeopathic substances and supplements especially ones such as Gingko Biloba, St Johns Wort and Evening Primrose Oil. These may affect seizure control for some people. Read more about using complementary therapies for people with epilepsy.
Your pharmacist should know what over-the-counter medications interact with your epilepsy medication.
Brands and Generic Medications
There are many different brands and generic epilepsy medications on the market and your pharmacist may offer you an alternative to the one you usually take.
Do not change brands until you have spoken with your doctor. Although there are only slight variations between some brands, this may affect your seizure control or side effects.
Read about Switching Brands
Be Aware of Seizure Triggers
Knowing your seizure triggers and trying to avoid them is important for seizure control. Avoiding seizure triggers can be very difficult at times. Weigh up the risks and look at the quality of life issues. Don’t restrict your life to having no enjoyment.
Common reported seizure triggers include missed medications, sleep deprivation & stress
More individual seizure triggers can also include:
- Physical fatigue or exhaustion
- Emotional upsets, over-excitement
- Hormonal changes in females
- Low blood sugar
- Heat or weather changes
- Alcohol and drug use
- Flashing lights and geometric patterns
Keeping a seizure diary may be helpful in identifying patterns and seizure triggers.
Be aware that vomiting and diarrhoea can also trigger seizures because medications may not be absorbed properly and fluid and electrolyte imbalances can occur due to dehydration.
Most people with epilepsy agree that taking their medication regularly and simply being careful with their lifestyle lessens the chances of having a seizure.
Make any necessary lifestyle changes.
Keep a seizure diary
Seizure diaries can help to identify seizure triggers, and provide a good picture of seizure patterns. Your seizure diary needs to include:
- Date and time of seizures
- If you were asleep or awake
- Description or type of seizure
- What happened before, during and after the seizure, if known
- Medication taken and missed that day, including medication for other conditions
- Any possible events or circumstances that may have triggered the seizure
- General health and energy level leading up to the seizures
- Menstrual cycle for women
Self-management is now encouraged in many areas of healthcare, and with ready access to so much information people are now more likely to be involved in their own health decisions.
Join a support group
Epilepsy Action and Friends Online Support Group is designed to bring together an Australian community of people aged 21 and over who have/had epilepsy or know someone with epilepsy. This is a place for you to share your own experiences, meet others with epilepsy and gain practical advice so you feel supported living with epilepsy.
Oz Youth Beyond Epilepsy is a great place for young people aged 16-23 years to connect, share experiences and support each other. There will be weekly topics, competitions and opportunities to make your own video to share.
For more information:
This Way Up – a free online course to manage stress
Wellbeing Neuro Course specifically for people with neurological conditions