Managing your epilepsy

Complete management of your epilepsy includes medical management (diagnosis and treatment), self-management (day to day care, lifestyle adjustments and informed awareness) and non medical management (complementary therapies).

It is a team effort involving you, your doctor and other health professionals. Successful management combines the best possible medical care, a healthy lifestyle and self awareness to develop your own strategies in order to help reduce seizures where possible.

Medical management

Diagnosis

A diagnosis of epilepsy can mean initially that there are frequent visits to doctors, medical investigations and tests, decisions about appropriate treatment and fine tuning of medications, making life very busy for a while.

There are many types of epilepsy which respond well to specific medication or a combination of medications. It is essential that your epilepsy is accurately diagnosed so that medication can be prescribed which will reduce the number of seizures as much as possible.

The process of diagnosis usually begins if your GP (general practitioner) suspects that you have epilepsy and so refers you to a neurologist or paediatrician.

In diagnosing epilepsy the doctor tries to determine:

• if the episode you experienced was a seizure
• the type of seizure you experienced
• the possible cause of the seizure
• if epilepsy is the reason for the seizure

There are several investigations that need to be performed to assist in the diagnosis of epilepsy.

Clinical history

The doctor will want to know your full medical history and whether there is a family history of epilepsy.

Description of event

It is unlikely that the doctor will witness your seizure, so it is very important to have an accurate and detailed description of the episode.

You may want to take along someone who has observed your seizure or ask them to write a detailed account for you to show the doctor.

It is helpful for the information to include:

• What happened at the start of the seizure (was there a warning, did it begin in one part of the body?).
• What happened during the seizure (was consciousness lost, were there unusual body movements, how long did it last?).
• How did you feel after the seizure had finished (confused, sleepy or headache?).
• Any other strange sensations or sensory experiences (for example, unusual smells, tastes, noises, unexplained feelings of fear, difficulty with speech or undertaking simple tasks?).

Keeping a seizure diary is a great help because this may help show up patterns in your epilepsy such as the seizures occurring at a certain time of the day or being triggered by certain stimuli.

Other diagnostic tests

Further investigation may include:

• A physical examination.
• Electroencephalogram (EEG). This will show and record the electrical impulses of the brain and may give an indication of the area of the brain being affected by abnormal electrical activity.
• CT SCAN (Computerised Tomography) and/or MRI (Magnetic Resonance Imaging). These tests are used to determine any structural abnormalities of the brain which may be a focus for the seizure activity.
• Laboratory tests. These include blood testing, blood counts and sometimes spinal fluid testing.
• Simultaneous video and EEG monitoring. This test is undertaken over a period of time to clinically observe and document seizure activity.

Treatment

Anti-epileptic drugs (AEDs)

Once diagnosis of epilepsy is established, your doctor will usually prescribe an anti-epileptic drug (AED) to help control your seizures. Approximately 80 per cent of people with epilepsy experience a reduction in the number of seizures they have, or their intensity, using anti-epileptic drugs.

The aim of treatment with anti-epileptic drugs is to completely control your seizures without side effects. If this is not possible, the goal is to reduce the frequency or intensity of your seizures with the least possible side effects.

Monotherapy is preferrable. This means that you take a single drug and the dose is increased, within a dosage range, until the best control is achieved. If the drug chosen doesn't control your seizures, or if unwanted side effects occur, then a second drug may be tried and the first is usually withdrawn. Only when seizures are resistant to single drug therapy should a combination of drugs be necessary.

You can find a list of common side effects in the Foundation's brochure Epilepsy Medications. Some side effects are common and acceptable in the first two or three weeks after beginning or changing medications. If they persist, consult your doctor.

Blood level monitoring

With certain medications the doctor will test your blood level after the anti-epileptic drug has been prescribed. Blood levels measure the amount of medication in your blood stream to see whether you are being prescribed a sufficient daily dose. Some anti-epileptic drugs, for example Phenytoin (Dilantin), are ideal for blood level monitoring whilst for other drugs, such as Sodium Valproate (Epilim), the test result is unreliable. Your doctor will advise you if blood levels need to be taken and how often.

Surgery

For some people whose epilepsy is not controlled with medication, surgery may be an option. This involves extensive testing and consultation between the patient, doctors and other professionals to decide if surgery could be beneficial.

Self-management

There is much that you can do to help in the treatment and management of your epilepsy.

Communication with your doctor

Good communication is a vital aspect of good medical treatment, enabling you to form a partnership with your doctor and take an active role in the treatment of your epilepsy.

Preparing any questions you wish to ask enables you to find out more about your epilepsy and how you can best manage it.

Write down your questions and take notes of the answers so that you can keep track of all the information the doctor tells you. There may be long gaps between appointments with a specialist so notes will jog your memory about unresolved questions or problems.

Repeating back to the doctor what they have said is a good technique that can help avoid any misunderstanding.

Common questions about treatment include:

• What other medications can I take?
• When do I take my tablets?
• What happens if I miss a dose?
• Can I become pregnant?
• Can I breast feed my baby?
• What might trigger a seizure?
• Can I drive?
• When can my treatment be stopped?

Ask your doctor what to do if you need to discuss your treatment or management between appointments. It's important to find a doctor who you feel understands you and your epilepsy. A good GP will play an important role in monitoring your epilepsy.

If you are having trouble communicating with your doctor and feel that the problem cannot be resolved you may consider seeking another opinion. Most doctors do not object to a patient seeking a second opinion and it is your right to do so.

"Most people with epilepsy will need some degree of specialist overview of their management, but the general practitioner is well placed to play a major role in co-ordinating diagnosis and treatment."
- Dr. Stephen Trumble

However it is not likely to be in your best interest to receive continuing treatment from two doctors at the same time.

Trigger factors

Some people, although not all, find that certain factors will trigger seizures. You may not become aware of these unless you keep a seizure diary for a period of time.

The following is a list of some of the most commonly noted triggers:

• Lack of sleep. Everyone differs in the amount of sleep they need, but it does seem to be important to avoid large fluctuations in the time you go to bed and to see that you have enough sleep to feel rested.
• Stress. Everyone experiences stress. In fact we need a certain amount to motivate ourselves and stay healthy. Extreme stress, however, may lower your seizure threshold and therefore trigger seizures. It is important to learn to recognise the signs and symptoms of harmful stress levels and to employ strategies which you find helpful.
  
  Relaxation techniques such as yoga, meditation, breathing exercises or aerobic exercise might be options worth trying. (For more details, see the Foundation's brochure Stress and Epilepsy and book Working Towards Wellbeing).
• Infections and Illness. Children are particularly likely to have more seizures when they develop infections such as tonsillitis and earache. This is possibly due to having a high temperature. Once the temperature is lowered this can reduce the risk.
  Allergies may trigger seizures in some people with epilepsy.
  
  Diarrhoea and vomiting may trigger seizures because they can prevent the absorption of anti-epileptic drugs. Ask your doctor what you should do if this occurs. (For further information see the Foundation's brochure Safety Considerations with Antiepileptic Medication
• Menstruation. Some women find that their seizure control can deteriorate just before or during their menstrual period. This may be caused by factors such as increased fluid retention, alteration in hormonal levels and alteration in the blood levels of anti-epileptic medications. If you notice this happening, discuss it with your doctor because altering your dose of anti-epileptic drugs or introducing another medication may help control the problem.
• Photosensitivity. About two per cent of people with epilepsy are photosensitive, which means that seizures can be provoked by sensory stimuli; such as flickering sunlight, strobe lights, flickering television and computer screens.
  
  Simple preventive measures can be taken to decrease the likelihood of seizures from this source, such as wearing wrap-around sunglasses when outside: sitting to the side, rather than directly in front, of the television in a well lit room. If you are affected by computers, a non-interlaced monitor may help, as will taking regular breaks from working at your computer.
• Severe changes in temperature. For some people a seizure may be triggered when the weather becomes very warm or rooms are overheated.
  
  It is now possible to claim concessions on your energy bills if your doctor can verify that you require heating/cooling owing to your body's inability to control its own temperature.
• Diet.
• Caffeine. Consuming drinks that have a high caffiene content such as tea, coffee and cola for example, can trigger seizures.
• Vitamin deficiencies. There is no conclusive evidence to suggest that seizures can be triggered by a deficiency in vitamins or minerals.
• Missing meals/hypoglycaemia (low blood sugar levels). Some people are susceptible to seizures if they miss meals and have a low blood sugar level. Regular meals and eating immediately after getting out of bed in the morning will protect you against large swings in blood sugar levels.
• Alcohol. Alcohol may interact poorly with your medication and reduce its effectiveness, or make you feel sedated. Some people find even small amounts trigger seizures. Ask your doctor about the effects of drinking alcohol with your medication.
• Other drugs. There are a number of other legally prescribed drugs that may provoke seizures such as anti-depressants, anti-histamines, anti-psychotics, penicillins and general anaesthetics.
  
  Withdrawal from sedative and hypnotic drugs including minor tranquillisers, sleeping pills and illegal drugs can be a problem, as can combining these drugs with anti-epileptic medication.
  
  Recreational drug use. Drugs like cocaine and marijuana may trigger seizures or lower the seizure threshold. In the case of marijuana, the "abrupt withdrawal of the substance after recreational use may increase the likelihood of seizures".(1) In addition, the "sleep deprivation (and) confusion" which may arise from such abuse "can cause persons with epilepsy to forget to take their antiepileptic drugs, thereby increasing the risk of seizures".(2)
  
  It is important to tell your doctor about all the medications you take.
• Missed medication. Some people are likely to experience increased seizures when they miss a dose of their anti-epileptic medication. The longer the break between doses, the lower the amount of medication in your blood and the greater the chance of you having a seizure.

There are other possible triggers. Some of these are unique to certain people, others may be a little more common. For example some unusual stimuli which have been known to trigger seizures include the colour yellow, the smell of glue and sounds such as a siren or the telephone ringing.

If you suddenly stop taking all medication, you may trigger a severe and prolonged seizure that will require hospitalisation.

Many people with epilepsy notice that they have short-term memory problems which can make remembering to taking medication difficult. You can develop strategies to help you overcome this, for example using a Dossett box.

It may also be helpful to carry a daily dose of medication in case you are not at home in time to take the next dose.

If you have been seizure free for at least two years you may wish to discuss the possibility of medication withdrawal with your doctor, but this decision MUST be made in consultation with your doctor because of the dangers described above.

Other treatments

Ketogenic diet

A ketogenic diet , which is rich in fats and oils, is sometimes prescribed for children who have failed to respond to all appropriate anti-epileptic medication with any satisfactory level of seizure reduction. Although it does help in some cases, it is not always successful and requires in-patient implementation with expert guidance and support

Complementary therapies

Many people consider other approaches to treating epilepsy such as acupuncture, aromatherapy, homoeopathy and naturopathy.

The success of these approaches has not been formally documented. However, most physicians agree that there is no harm in trying these therapies provided that anti-epileptic medication is still taken and all parties consult with each other. The EFV library has a file of research articles on the treatment of epilepsy with complementary therapies.

Biofeedback

This experimental treatment is based on the idea that a person, when hooked up to an EEG, may be able to control their brain waves. Biofeedback is not a standard treatment and, when used, is combined with drug treatment.

Behaviour control

Some people, particularly those who experience a prolonged aura or simple partial seizure that precedes another seizure, can develop effective techniques to control the spread of their seizures. Some of the ways they may do this are by concentrating on a task, a distracting thought or a particular object. Specific stimulation, such as tensing muscles or rubbing a part of the body, can also work.

Only a small number of people, however, will be able to achieve success through behaviour control techniques such as these.

For more information

For more information on management or any other aspect of epilepsy, contact any our offices (see Contact Details).

(1) & (2) DEVINSKY, O. "A Guide to Understanding and Living with Epilepsy", F.A. Davis Company, 1994