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Epilepsy Specialist Nurses - questions and answers
- What is an Epilepsy Specialist Nurse (ESN)?
- How can I access an ESN?
- I have just started some new medication and I am having adverse effects. Is this normal?
- I forget to take my medication sometimes. Is this a problem?
- Do I have to stop driving? If so, how long for?
- My seizures have recently increased. Why has this happened and what can I do about it?
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When I collect my prescription, I am given a different brand of medication each time. Is this OK?
What is an Epilepsy Specialist Nurse (ESN)?
An epilepsy specialist nurse is a nurse who has become a specialist in the field of epilepsy. They are experienced nurses who have undertaken additional training in epilepsy and are able to work with advanced expertise in this area. They work closely with neurologists to provide a service to individuals with epilepsy and can advise on a range of issues from concerns about treatment to providing information about benefits. They can be based in hospitals and/or work out in the community, visiting people in their homes.
How can I access an ESN?
Unfortunately, not every hospital has an ESN. If your hospital does have one, your neurologist or GP should be able to give you the contact details.
I have just started some new medication and I am having adverse effects. Is this normal?
All medications can cause adverse effects so when a new medication is started, there is always the potential for adverse effects to occur. Some adverse effects may be mild and get better as you get used to your medication but others can be uncomfortable and result in you needing to reduce the dose or even stop the medication altogether. Some adverse effects such as a drug-related rash can become serious and require urgent medical attention. If you are concerned about adverse effects, you should seek the advice of your neurologist, ESN or GP.
I forget to take my medication sometimes. Is this a problem?
Medication needs to be taken regularly in order for it to be most effective at preventing seizures. Forgetting medication from time to time will put you at risk of having more seizures than you might otherwise have and it will also make it difficult to work out if a particular medication is effective for your epilepsy.
If you find it difficult to remember to take your medication, a pill box can act as a good visual reminder to take your medication and will also show how often you are forgetting to take it. Family members can help to remind you to take your medication and mobile phone alarms can also be helpful. If you still have problems remembering to take your medication, it is important to be open about this when you discuss your condition at your appointment in the epilepsy clinic.
Do I have to stop driving? If so, how long for?
The regulations about driving and epilepsy are set by DVLA and are quite detailed. In all cases, you would need to inform DVLA of your condition and they would then make a decision about whether to allow you to drive.
If you are having seizures, DVLA regulations would bar you from driving until you have been free of seizures for a period of one year. The regulations do not make any allowance for the type of seizure that occurs and all types of seizure are a bar to driving even if you do not lose awareness during them.
If you have seizures only when you are asleep with no seizures occurring whilst you are awake over a period of at least 3 years, DVLA rules would allow you to drive.
There are different rules for people who experience a first seizure.
My seizures have recently increased. Why has this happened and what can I do about it?
Individuals do sometimes find that their seizures start occuring more frequently and it is not always possible to work out why this is the case. However, sometimes certain situations contribute to a worsening in seizure control and these can include:
- Missing doses of medication
- Sleep deprivation
- Excessive alcohol intake
- Having a fever
- Increased psychological stress
If your seizures do not settle down, it may be helpful to discuss this with your neurologist, ESN or GP.
When I collect my prescription, I am given a different brand of medication each time. Is this OK?
When a new medication is developed, the company that develops it own the rights to it and other companies are not permitted to produce the same medication. After a period of time, this protection expires and other companies are allowed to licence their own version of the medication. These are known as generic formulations.
Whilst different formulations of the same medication will contain the same amounts of the medication in question, there may be small differences in the other ingredients which can affect the amount of the medication that is absorbed.
This may not make any difference but, for some people, these small differences can result in the person having more seizures or an increase in adverse effects. It can also be very confusing when different formulations of the same medication are available in various shapes, colours and sizes.
Because of these possible problems, we usually advise that individuals take the same formulation of a medication if possible. It can be helpful to discuss your concerns with your regular pharmacist to see if you can get a regular supply of the same formulation each time.
These opinions are those of Anthony Linklater, Epilepsy Specialist Nurse, and not necessarily those of Epilepsy Society.
© Epilepsy Society
Information produced in October 2010
