How often should I have an epilepsy review?

How often should I have a review meeting to discuss my epilepsy and my epilepsy medication?
What is a review?
Why should I have a review?
Who will I talk to?
Don't change your medicines suddenly
What will we talk about?
How do I ask for a review?
Is there anything else I should ask?
Do you know what brings on your seizures?
Have you heard people mention SUDEP?
Can I talk about how epilepsy affects the rest of my life?

How often should I have a review meeting to discuss my epilepsy and my epilepsy medication?

You can ask for this meeting with a doctor or nurse to talk about your epilepsy. Your doctor's office will arrange for you to see someone. This is usually called a review. If your doctor is unable to carry out a review, or if you are unhappy with the advice you are given, you can ask to be referred to a specialist. Or think about changing practices to one that does epilepsy reviews.

This guide is to help you get the best from your review. If you are a caregiver for someone with epilepsy (for instance, someone with difficult to control epilepsy, a child, an older person, or someone with learning disabilities), you can read through this CHQ with them.

Back to top

What is a review?

A review is a meeting to focus on your epilepsy, with a health professional - a doctor or nurse. There may be questions that you want answered or worries that are bothering you. The person you meet with may also have changes or questions to raise with you, although you don't have to agree to their suggestions.

• The meeting should be convenient. It will be booked in advance at a time to suit you and your health professional. How long it lasts depends on how much there is to talk about.
  
• The meeting is confidential. Whoever you talk to, the details will be kept private. You can talk openly and your questions or worries will be listened to. A note to say the meeting took place, and any changes agreed to, will be put into your medical notes. So whoever you meet with, your doctor will know what you have agreed.

Back to top

Why should I have a review?

If you have seizures, or problems with medication, a review can help. Changes to your everyday life, or to your medication, could lead to fewer seizures (fits) or fewer side effects.

Even if you feel well, and aren't having any seizures, regular review of your epilepsy can help you. A healthy lifestyle and taking the right medication usually means most people with epilepsy can live without seizures. The aim is to enable you to lead as full a life as possible and minimize the risks that seizures and medication can bring.

If there is an urgent problem with medicines or your seizures, don't wait for a review:

• if you have taken too much of any medicine,
• if you have an allergic reaction to a new medicine (such as wheezing, rash, swelling or fainting),
• if you notice a possible side effect or any unusual symptoms, and/or
• if you notice your health getting worse.

In any of these cases, talk to a doctor, nurse or pharmacist right away.

Back to top

Who will I talk to?

• A health professional. The person you meet may be a specialist nurse or doctor, a doctor or a specially trained nurse practitioner.
• A good listener. They will be ready to listen to your worries and your questions.
• Someone you can be open with. You can say whatever you want in these meetings.

Back to top

Don't change your medicines suddenly

Even quite small changes to the amount of medicine you take can affect your epilepsy and put you at increased risk of seizures. If you take prescribed tablets for epilepsy:

• take them as your doctor prescribed them,
• don't change your dose without talking to your doctor, and
• don't suddenly stop taking your tablets.

If you get different tablets:

• Ask a doctor, nurse or pharmacist if you have been given new or different tablets that you weren't expecting. That includes different shaped or different colored tablets or different packaging. There may have been a mistake. A different make of tablet, even if it contains the same type and quantity of medicine may affect your epilepsy. You can ask for your tablets by brand name to make sure this does not happen.
  
• If you are worried about the medicines you are taking, see a doctor, nurse or pharmacist before you do anything else.

Back to top

What will we talk about?

• Your seizures and any questions about them.
• Any questions about your epilepsy are OK.
• You can raise any points about living with epilepsy.
• For women, questions about contraception and possible pregnancy.
• Taking your epilepsy medicines and how you're getting on with them. You may wish to discuss any side effects.
• You may be worried about being given different tablets to your normal ones. The person you meet will also ask you about your medicine taking.
• Questions about any other medicines.
• Discuss any worries you have.
• You may want to discuss getting the right balance between side effects of your medicine and seizure control.
• You may want to talk about feeling stressed or anxious.

Back to top

How do I ask for a review?

Call your doctor and ask for one.

Back to top

Is there anything else I should ask?

What risks do you run in everyday life? You may want to ask about safety. If a seizure affects your awareness or involves falling without warning, you can be at risk of injury or accident. You may want to talk about safely taking part in sports or other activities. You can also ask about safer living, bathing, driving and general safety advice.

Back to top

Do you know what brings on your seizures?

Ask about triggers. Some things may trigger seizures. Common triggers include stress, lack of sleep and forgetting to take your tablets. Did you know that recreational drugs or too much alcohol may increase the number of seizures you have? Have you been having longer seizures, or having them more often? Ask about the new pattern of seizures.

Sometimes people get seizures that last longer than normal, happen more often or are a different type. This is not very common but it is important that your doctor knows if this has happened to you.

Back to top

Have you heard people mention SUDEP?

Ask for advice about reducing your risk. SUDEP means Sudden Unexpected Death in Epilepsy. A small number of people die early from SUDEP each year. The better your epilepsy is controlled, the less likely it will happen to you - and there's plenty you can do to reduce your risk. The person you meet with can discuss this with you.

Back to top

Can I talk about how epilepsy affects the rest of my life?

Obviously there's more to life than taking medicines. You can raise anything about the way epilepsy or your medication affects your life.

• Feeling anxious, frustrated or depressed? People with epilepsy get these feelings just like everybody else, and you can ask for help coping with them.
  
• Do periods affect your epilepsy? Some women find that their seizures are worse around the time of their period. You can discuss this at the meeting.
  
• Are you pregnant, or might you get pregnant? If you want to start a family, you'll need expert advice on medicines. If you are already pregnant, tell the person you meet with.
  
• Are you on the Pill? The Pill can be less reliable when taken with some epilepsy medicines - so it's important to talk about it.
  
• Lost weight? Gained weight? Medicines can cause weight loss or gain in some people. If you're unhappy, the doctor or nurse may be able to offer a different medicine. Mention any changes to your weight, especially weight loss, because it can also affect the way medicines work.
  
• Ask about the menopause and HRT. These can affect epilepsy. Tell the person you meet with if you have been going through the menopause (the change of life) or are taking hormone replacement therapy (HRT).As you get older, and especially if you take more medicines than before, it's possible that your epilepsy medicine may need adjusting. You may also be more worried about falling. Mention any of the above when you go for a review.

Back to top