Keeping Track/Contacting people

Being able to contact quickly the people who help you manage your epilepsy can be important. Having their details handy can mean that you might make a call when you need to rather than putting it off until you find the scrap of paper on which you wrote their details.

Tracking seizures

A record of your seizures is important

Few doctors ever see their patients having a seizure and they rely heavily on the account of observers - parents, partners, relatives, friends or colleagues, in making a diagnosis. There are many different types of seizures, and an accurate diagnosis is easier to make if a clear description of the seizures is available.

After diagnosis your doctor is likely to welcome an on-going record of seizures detailing frequency, and any changes that may occur in the pattern of the seizures or in the seizure type. Such information will help in prescribing appropriate treatment. If you are caring for a person who has epilepsy you will need to know what to look for as you may miss important details if you do not understand their relevance. Parents will soon grow to recognise the features of epilepsy in their child. Others, such as care-staff may look after a number of people with epilepsy who are all affected differently. To ensure consistency of information in such instances it may be advisable to develop a standard form of recording seizures.

In the next two sections Seizure First Aid and Understanding Epilepsy we will look at some of the different forms seizures can take. For recording seizures it is helpful if you can record the three stages of a seizure - beforehand, during the seizure and afterwards.

Seizure Stages

Build up and onset

This may last for several days in the form of a build-up of tension, or for only a few minutes. In some instances an 'aura' is experienced. An aura is in fact a partial seizure or the first stage of a more complex or generalised seizure. It may consist of odd sensations such as an unpleasant smell, a peculiar taste, a tingling feeling, nausea, or butterflies in the stomach. These partial seizures usually occur quite quickly though they may feel like they are happening quite slowly. They are not always present, even for people who sometimes experience them. They may precede both tonic-clonic convulsive seizures and complex partial seizures. Some people feel this is their warning sign and they immediately lie down or try to assume a safe position.

The seizure

This may be one of many types. Each seizure is individual to the person who has it. Record a detailed description of what you observe.

The period after the seizure

Recovery may be immediate or may take a few hours. On rare occasions effects may last for as long as a few days, and this is more likely with elderly people than with younger people. After a convulsive seizure there is often confusion and drowsiness and at times an unsteady gait, headache, or slurred speech. There may be incontinence during a seizure or loss of other bodily functions and this may add to the distress of the person during the recovery period.

Detailed observations or a summary?

If you can answer all the questions in the following detailed observation sheet you will provide a very full picture of a person's epilepsy. A detailed account such as this can be very useful at the onset of epilepsy or at times of change, such as when medication is altered, or when you believe there has been a change in the pattern of seizures. At other times it may only be necessary to keep a summarised record - such as the summarised seizure record that follows the observation sheet.

You may photocopy these sheets without restriction and further copies are usually available from you state or territory epilepsy association.

Detailed observation sheet

Medication Record

A medication record can be very useful; especially if your seizures are difficult to control and your doctor has to consider varying your medication regime or sending you to a specialist to take a closer look at what is going on. If you move away or have to change your doctor from time to time, an up-to-date medication record will prove invaluable.

You may decide to go to another doctor yourself and this will be an excellent record to take with you.