Your care: Ongoing epilepsy treatment

How long does it take to treat epilepsy? 

Epilepsy cannot be cured. But it can be managed well with the right treatment and support. How long it takes to get seizures under control, varies from person-to-person. It also depends on the type of seizures you have and the treatment you’re given (prescribed). Treatments may include:   

• Anti-seizure medications (meds) – each med is different. You may have to try a few different anti-seizure meds, or a combination of different types, before you find something that works well. This can take time to get right. You’ll usually keep taking your meds for as long as you’re having seizures. But if you’ve not had a seizure for two years, your doctor may suggest stopping or reducing the dose. 
• Epilepsy surgery – how successful your epilepsy surgery is will depend on many different things. For example, the type of surgery you’ve had, and which part of your brain was affected. About seven out of 10 people become seizure-free after brain surgery.  

Talk to your doctor about your own situation. They will try to answer any questions you have about how long it might take to treat your epilepsy.

What healthcare professionals might be involved in my care?   

If you have epilepsy, there will probably be lots of different health professionals involved in your care. Some you may see regularly. And others you may not see as much. You may hear them being called your medical team. They may include: 

• Paediatrician – a doctor, usually based at a hospital, who looks after babies, children, teenagers and young adults 
• Neonatologist – a doctor who looks after premature or very young babies 
• GP – a general practitioner or family doctor  
• Community nurses and health visitors 
• Epilepsy specialist nurse – an experienced nurse who supports children, young people or adults with epilepsy  
• Paediatric neurologist – a specialist doctor trained to look after people with neurological disorders (any disorder of the nervous system) 
• Neurosurgeon – a specialist doctor who performs operations on a person’s brain 
• Pharmacist – a health professional who usually works in a pharmacy and gives out medicines and advice about medicines 
• Counsellor – a specialist who is trained to listen and talk about how you’re feeling 
• Psychologist, including an educational or neuropsychologist – a specialist who is trained to listen and talk about how you’re feeling and give you tools to help 
• Psychiatrist – a doctor who specialises in mental health 
• Dietitian – a specialist who knows a lot about food and helps people choose the right foods to stay healthy or feel better when they are ill. 

If you have any questions or need information or support about your care, people in your medical team will be able to help you. No question is ever silly. They are all there to look after you and keep you feeling well.

Where can I find support for epilepsy treatment?  

Talk to your medical team if you have any questions about your epilepsy treatment.  All young people with epilepsy should have a specialist nurse who they can contact and talk to for help. You should be given their phone number or email so you can contact them even if you don’t have an appointment. They are there to help and support you. If they can’t help, they may be able to send (refer) you to a person or place that can. 

You should have regular check-up appointments with your doctor, to see how you’re getting on with your meds. They will also make sure the dose is right for you. Sometimes it may need adjusting, or your doctor may suggest adding another medication if you’re still having seizures. It’s important to go to these appointments and keep your doctor up to date with any changes in how you feel. 

You may also find it helpful to talk to others about your epilepsy and treatment. Support groups, either face-to-face or online, are a good way to connect with people who understand what you’re going through. Your doctor or epilepsy specialist nurse may be able to give you details of support groups near you. You don’t always have to talk or make posts in a support group or online forum. Sometimes just reading about other people’s experiences can be helpful.

Top tips for staying on top of your epilepsy treatment 

Staying on top of your epilepsy meds can be hard. Especially if you’re also trying to juggle schoolwork, time with friends and doing the things you enjoy. But there are a few things you can do that may make things a bit easier. 

• Stick with it – it can take a while to find the right meds that work for you. Remember, for the meds to work properly you must always take them correctly. And at the right dose. Taking your meds properly, and sticking with them, will help make sure they keep your seizures under control. Even if your seizures stop and you feel well, it’s important to keep taking your meds. 
• Write down how you feel – keep a note of how you feel. Write down any symptoms, seizures or possible treatment side effects. This is a helpful way of keeping track of your epilepsy. It can also be useful to show this to your doctor at appointments. 
• Set reminders – set reminders in your phone so you don’t forget to take your meds.  Taking your meds properly and not missing a dose, will help to keep your seizures under control. 
• Eat well and keep active – having a well-balanced diet, eating regular meals, and keeping active, will help you feel well. It will also boost your mood and improve your general health. 

Everyone feels overwhelmed from time-to-time. But managing a health condition such as epilepsy may add to this feeling. Remember, there are people who can support and help you. If you need help staying on top of your epilepsy treatment always talk to your medical team, a pharmacist, or your parents or carers. 

 Other useful organisations  

NHS website 

www.nhs.uk 

Information about epilepsy and different tests and scans. 

NICE website  

www.nice.org.uk  

Up-to-date guidelines for children and young people with epilepsy.