Self Management

Home > About Epilepsy > Living with Epilepsy > Self Management

Self-management is essentially when someone with a chronic disease takes an active role to manage their own illness. It includes things such as making healthy lifestyle choices and informed decisions about treatment and actively monitoring and managing symptoms.

Here we have a number of practical tips that may prevent seizures and help take control of your life.
 
Educate Yourself

Try to find out as much as you can about your condition so you can understand and learn how to manage it.

  • Knowledge can reduce anxiety and concerns by helping you understand epilepsy and feel more 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 your own seizure triggers or seizure patterns, which helps you to realise and possibly avoid what may set off your seizures.
  • The correct information can dispel myths and make you feel more comfortable talking about epilepsy to others.
  • By educating yourself, you can educate others.

 
Take Medications as Prescribed

Medications don’t cure epilepsy, but they can control seizures.

Taking doses as prescribed by the doctor is essential to gaining seizure control. If you have difficulty remembering to take medication:

  • Make it part of a daily routine such as taking them at meal times.
  • Set a watch or small alarm clock as a reminder.
  • Use a pillbox or place the medications in a visible position as a reminder.
  • Use a chart or calendar and tick when the dose is taken.
  • Ask someone close to remind you.

 
Check Before Taking Other Medications or Supplements
Other medications, including over-the-counter medications, may interfere with antiepileptic medications or make you more prone to having seizures.

Many people believe that alternative or complementary therapies, such as herbal remedies, are safe because they are derived from natural sources, but this isn’t always true. Just like medications, these therapies have effects and side effects. Speak to the doctor before starting any complementary therapies; herbal medicines, homoeopathic substances and supplements such as Gingko Biloba, St Johns Wort and Evening Primrose Oil. These are believed to affect seizure control because they interfere with the metabolism of antiepileptic medications. Read about taking other medications when you have epilepsy
 
Brands and Generic Medications

There are also many different brands and generic medications on the market for epilepsy and your pharmacist may offer you one of these as an alternative.

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.
 
Avoid Large Amounts of Caffeine or High Energy Drinks

Caffeine is a stimulant found in coffee, tea, chocolate, many soft drinks, high energy drinks, some supplements and medications, including some diet pills, antihistamines and decongestants. Excessive amounts of caffeine can cause an increase in seizures in some people with epilepsy. In addition, caffeine may interfere with antiepileptic medications, and affect sleep patterns.

Guarana is a natural caffeine source and a stimulant. It is a common ingredient in high energy drinks and herbal ‘weight loss’ teas and can combine with adrenaline to produce an even stronger stimulant effect.

Any substance that is considered a stimulant should be avoided or taken with care and moderation, as stimulants are more likely to increase the risk of seizures. It’s hard to know exactly how much caffeine is a problem, as its effects on the body vary from person to person. The rough guideline for the average person is to drink (or eat) less than 600mg per day – around four cups of strong coffee, or five or six cups of tea. This would be less for someone with epilepsy. So limit your intake to two or three drinks at most.
 
Grapefruit and Seville oranges

There are chemicals in grapefruit that can interfere with the way the body absorbs and breaks down (metabolises) certain medications, increasing or decreasing its levels in the bloodstream. One of these medications is Tegretol (carbamazepine). Avoid grapefruit or Seville oranges if you are on this medication.
 
Get Enough Sleep

Lack of sleep is a common trigger for seizures in people with epilepsy.

The amount of sleep a person needs will differ between individuals, but it is recommended that people with epilepsy stick to a regular bedtime and try to get a full night’s sleep (7-8 hours) as often as possible.

People with epilepsy do not need an excessive amount of sleep. Constant tiredness and sleepiness may be a sign that medications may need adjusting. If you suffer from sleeplessness or overtiredness, discuss this with your doctor.
 
Recognise and Respond to Stress

Stress can’t always be avoided, but you can reduce its impact by changing the way you respond. It is important to identify the cause of stress and find practical solutions.

Some known stress busters are:

  • Muscle relaxation exercises
  • Breathing techniques, meditation
  • Yoga
  • Effective time management
  • Music, reading
  • Good support networks
  • Exercise and sport
  • Avoiding stressful situations and people when you can

To deal with stress more effectively, think about what stresses you and how you react to it. Try to:

  • Understand what situations make you feel stressed
  • Understand what situations you can and can’t control
  • Prepare for stressful events in advance, by thinking about the future
  • Keep yourself healthy with good nutrition, exercise, and regular relaxation
  • Try to do something positive every day.

Don’t forget to be diligent about taking your seizure medication

If stress is having a significant impact, discuss concerns with a professional such as a psychologist or counselor.
 
Be Aware of Seizure Triggers

Identifying seizure triggers and learning how 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.

LIVE LIFE THE BEST YOU CAN!
 
Common seizure triggers include missed medications, sleep deprivation and stress.

More individual seizure triggers can also include:

  • Hormonal changes in females
  • Low blood sugar
  • Extreme heat or cold
  • Startle such as a loud noise
  • Depression, boredom or overexcitement
  • Alcohol and drugs
  • Flashing lights and geometric patterns

Keeping a seizure diary may be helpful in identifying your seizure triggers.

Be aware that vomiting and diarrhoea can also cause seizures because antiepileptic 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 minimises the chances of having a seizure.
 
Drugs and alcohol

There are individual differences in the effect that alcohol has on seizures. Some people with epilepsy are more affected than others. In small amounts, alcohol should not cause seizures. Alcohol and recreational drugs can interfere with the metabolism of antiepileptic medication and excessive alcohol intake is known to increase a person’s risk of seizures.

These are a few important points regarding drugs and alcohol:

  1. Most people with epilepsy can enjoy a social drink; however some antiepileptic medications do not mix well with alcohol.
  2. Heavy or binge drinking is not recommended. Not only the drinking can increase the risk of seizures but also late nights, missed meals, forgetting medications and poor sleep, can trigger seizures as well.
  3. Antiepileptic medication can lower your tolerance for alcohol, so the immediate effects of alcohol are greater. In other words, you will get drunk faster.
  4. Both alcohol and many antiepileptic medications are metabolised by the liver. Chronic and excessive consumption of alcohol can cause liver problems that may change the effectiveness of antiepileptic medications.
  5. Some drugs or substances, such as alcohol, caffeine, nicotine and various prescribed and over-the-counter medications, are legal. Taken incorrectly or in large amounts may increase the risk of seizures.
  6. Many illicit recreational drugs, especially stimulants such as cocaine, ‘crack’, ecstasy and speed (amphetamines) plus illicit synthetic drugs have the potential to cause seizures and it is uncertain what interactions these, or any illegal drugs, may have with any prescription medications. A person using illegal drugs can never be sure of how strong the drug is, or what is actually in it. It is very risky for someone with epilepsy to take these drugs.

 
How you can manage alcohol

A few pointers if you still like to have a drink.

  1. Avoid binge drinking. This can often trigger seizures several hours later after the drinking has stopped.
  2. When you are drinking alcohol, drink slowly, stick to low alcohol drinks or have a non-alcoholic drink in-between drinks. Don’t keep up with your friends if they are drinking heavily.
  3. If you are at a party keep your drink in your hand and drink it slowly. That way people won’t harass you to have another drink if they see you already have one.
  4. If you know it’s going to be a late night, the try and catch a power nap in the afternoon.
  5. Keep yourself hydrated with non-alcoholic drinks (not beer).
  6. Don’t abuse alcohol. This can cause different types of seizures called alcohol withdrawal seizures, and it will make your epilepsy worse.

If you have concerns regarding alcohol or other drugs that you think are affecting your seizure control, discuss these with your doctor.

For more information about alcohol and drug and epilepsy click here.
 
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 seizure triggers
  • General health and energy level leading up to the seizures
  • Menstrual cycle for women
    Keeping a seizure diary is a good way to identify possible triggers. To use our online seizure diary click here.

Join a program

A variety of programs encourage self-management through:

  • Techniques to deal with issues such as frustration, fatigue, pain and isolation
  • Appropriate exercise for maintaining and improving strength, flexibility, and endurance
  • Appropriate use of medications
  • Communicating effectively with family, friends, and health professionals
  • Nutrition
  • How to evaluate new treatments

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.
 
For more information:

Lack of sleep and epilepsy 

Is it safe to use generics?

EAA Seizure Smart Factsheet – Switching Brands

Stress Basics

This Way Up – a free online course to manage stress

Book: Complementary and Alternative Therapies for Epilepsy.

Expert Patients UK

Some health funds may offer programs as well. Click here to see examples.