Just Diagnosed

Looking After Yourself

If you have just been diagnosed with epilepsy, you might feel many things – shock, confusion, anger, fear or sadness. Some people may even feel relieved with a diagnosis after a long-time of not knowing how to manage their health.

Everyone’s reaction is different, but they’re all completely normal.

It can be difficult to come to terms with a diagnosis of epilepsy, but it’s important to remember that generally most people with epilepsy can lead a full and active life. Even though seizures can be disruptive and impact on many areas in life, the majority of people with epilepsy achieve good seizure control with regular medications and a sensible lifestyle.

Epilepsy should not define who you are and what goals you would like to achieve.

A few tips

Take the time to adjust your diagnosis. A chronic or long-term illness usually means having to adjust, getting used to taking medications and maybe changing the way you live and work. This can add extra stress, and sometimes change the way you see yourself and relate to others.

It can be difficult to maintain an emotional balance and cope with negative feelings and certainly living with epilepsy can open the door to depression and anxiety. So be aware of the symptoms of these conditions as well as they can creep up on you. Epilepsy, Anxiety and Depression.

Realistically, you will have ‘good’ days and ‘bad’ days and you can be affected not only physically, but emotionally, socially and sometimes financially. When you need help, ask for it.

Try to learn as much as you can about epilepsy, ask for support when you need it, and actively involve yourself in your treatment and management of the condition.

Maintain your social relationships and don’t isolate yourself. Family and friends are a source of support for most people.

Above all, look after yourself. Try and eat healthy, sleep enough and keep active. That not only goes for those with epilepsy but for the parents of children with epilepsy or those who care for a relative or loved one with the condition.

Epilepsy is a health condition, it is not a lifestyle. It doesn’t mean that you can’t pursue your dreams and enjoy life just like everyone else.

There’s no time limit on adjusting to having epilepsy. In fact, most people will find that emotions surface sometimes, depending on what’s happening in their life, especially when experiencing any setbacks or having a bad day. Even if your seizures are controlled, it’s natural to feel sad or worried from time to time.

Experiencing a range of emotions is quite normal, but you should watch out for signs of depression. If at any stage you begin to feel overwhelmed, seek help immediately.

For information and help with depression go to:

 

Adjusting to Life with Epilepsy

It is likely that your diagnosis may lead to some unavoidable life changes. These can range from a change in your transport, adapting your job role or lifestyle habits so that it suits your health.

  • As much as possible try to maintain your normal daily routine, including working, socialising and exercising. Maintaining a level of normality is often beneficial for your physical and psychological health – unless your life is extremely busy or stressful, then things might need to change.
  • Try not to isolate yourself. Have at least one person you can talk to.
  • Learn about epilepsy and the type of epilepsy you have. It can really help you feel a sense of control and will allow you to make informed decision about your medication and health.
  • Seek help if you are feeling depressed or anxious all the time. It is quite normal to have these feelings after a diagnosis of epilepsy or any other health condition.
  • Speak to your doctor if you feel your medication is giving you too many side effects, or ones that are negatively and significantly affecting your life.
  • Find a support group to join. There are many online support groups for people with epilepsy who share experiences and ask questions. These can be very beneficial for some people. Speak to Epilepsy Action for more information on the many avenues of support we offer.

For more information

EAA brochures

Epilepsy and Mood

Lifestyle Changes

People often find that making some minor changes to lifestyle can reduce  seizures. There are a few things you can do to avoid seizure triggers that can not only improve your life but give you a sense of control. These can include:

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 reduce the effectiveness of antiepileptic medications, and disrupt sleep.

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 is recommended that the average person drink (or eat) less than 600 mg per day – around four cups of strong coffee, or five or six cups of tea. For someone with epilepsy the recommended would be two or three caffeine drinks at most.

High energy drinks. There are reports of seizures induced by energy drinks. These drinks contain more caffeine than a strong cup of coffee, and the caffeine combined with other ingredients such as guarana, amino acid taurine, green tea and other herbs, vitamins and minerals, may interact.

The combination of the stimulant and sugar can also be dehydrating and when consumed with alcohol may affect heart rates, blood pressure and even mental state. More than one energy drink can lead to side effects which include nervousness, irritability, frequent urination, and arrhythmia.

Avoid these drinks if you can.

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 at all times if you are on this medication.

Get Enough Sleep

Lack of sleep is a common trigger for seizures for many people with epilepsy. The amount of sleep a person needs will differ, 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 should 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, excessive daytime sleepiness or over-tiredness, discuss this with your doctor.

For more information

Sleep and Seizures

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
  • do something positive every day.

If stress is having a significant impact, discuss concerns with a professional such as a psychologist or counsellor.

For more information

Stress Management

This Way Up – a free online course to manage stress. There are many other online courses or apps to help with stress.

Be Aware of Seizure Triggers and Keep a Seizure Diary

Identifying seizure triggers and learning how to avoid them is important for seizure management. Common seizure triggers include missed medications, sleep deprivation and stress.

Avoiding seizure triggers can be very difficult at times. Weigh up the risks and look at the quality of life issues. Don’t restrict yourself to the point of not enjoying life any more.

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.

Access our online seizure diary 

For more information

Dr Dan McLaughlin Seizure Anxiety

Drugs and Alcohol

In small amounts, alcohol should not cause seizures, but some people with epilepsy are more affected than others. 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:

  • Most people with epilepsy can enjoy a social drink; however, some antiepileptic medications do not mix well with alcohol.
  • Heavy or binge drinking is certainly not recommended. Not only can this increase the risk of seizures but the associated late nights, missed meals, forgetting medications and poor sleep, can trigger seizures as well.
  • Antiepileptic medication can lower your tolerance for alcohol, so the immediate effects of alcohol are greater. In other words, you will get drunk faster.
  • The side effects of antiepileptic medication may be enhanced by alcohol.
  • 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.
  • 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 they may increase the risk of seizures.
  • Many illicit 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 illicit drugs, may have with your prescription medications. There is no certainty about 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

Alcohol and Epilepsy

Alcohol and Drugs

Living Alone

Living alone may or may not be a lifestyle choice. Many people who live alone enjoy their independence, which is important in maintaining self-esteem and taking control over one’s life and choices.

A common concern for people with poorly controlled seizures living alone is what if a seizure occurs causing injury, and nobody knows?

There are many alarms and devices available that can help people who live alone, ranging from telephone alarms, personal alarms, fall alarms, and daily calls. These products can notify emergency assistance or nominated people should a seizure occur. There are many of options available and costs and service types vary considerably.

Whilst the monitors and alarms don’t guarantee 100% protection, the can provide peace of mind.

Epilepsy Action Australia will have information on these products.

Some people may have a routine with family or neighbours to either call, drop in or notice abnormal behaviour (e.g. the blind not being raised, lights not on).

Driving

Seizures causing loss of awareness (even if brief and subtle) or loss of motor control impair someone’s ability to control a vehicle.

When you have your first seizure, the doctor will inform you that you cannot drive and for the period you are to abstain from driving. This period will depend on many things including; what has caused the seizure, what type of seizure you had, if it is epilepsy, and what type of epilepsy.

It is important to remember that you will be advised not to drive and, if you have met certain criteria, you will be able to drive again – safely and legally.

Unfortunately, not everyone will get their licence renewed, and others may be issued a conditional license. Ultimately the decision to suspend or renew a driver’s licence rests with the Driving License Authority.

It is also important that you feel confident that you can drive safely.

For more information

Driving

Assessing fitness to drive