Steps to a Diagnosis

So, you have had a seizure. It might be epilepsy. What next?

While it may feel overwhelming, you’re not on your own. Doctors and medical professionals will be able to support you, and test and investigate in order to diagnose as quickly as possible. Diagnosis will mean you get the support and treatment you need.

What is a seizure?

A seizure is a sudden change in the brain that affects the way you feel, move or behave. There can be different causes. One of these possible causes is epilepsy.

A first seizure can happen at any age. Some people have childhood seizures and need paediatric care, while others don’t have their first seizure until adulthood. Some people only ever have one seizure, while others will have them frequently.

I have experienced my first seizure, what happens now?

It’s important to find out why your seizure happened, which a doctor or medical professional will be able to guide you through. It might be a sign of epilepsy, or there could be something else going on that needs investigation.

Your GP or health professional will ask you some questions and may refer you to a neurologist, a brain specialist. You should get an appointment within 2 weeks of being referred.

What if I have another seizure before my appointment?

That’s an understandable worry. It’s a good idea to avoid doing anything that might put you at risk if this did happen. So, stay safe by taking showers instead of baths, and make sure someone’s there to supervise you if you go swimming or climbing while you’re waiting to see the paediatrician or neurologist.

If a seizure happens:

  • Most of the time, it’s not an emergency – you just need to be kept safe so you don’t hurt yourself.
  • The people with you should call 999 straight away if you stop breathing, you don’t respond after the seizure ends, or if the seizure lasts more than 5 minutes. You might also need an ambulance if you hurt yourself badly during the seizure.
  • Keep a note of the details in a seizure diary, so you can describe what happened to the neurologist when you see them.
  • Check out our seizure first aid information and share it with others. Your friends and family, and anyone else you spend time with (like your teachers at school), need to be able to help you if you need it.

If you don’t get seen by a medical professional when the seizure happens, contact your GP afterwards to let them know.

A seizure diary is a valuable tool to help you feel a little more in control and work out why your seizures are happening. You can use an app, or simply use a notebook to jot down as many details as you can. These can provide clues about what might be triggering your seizures. Here are some suggestions for what to include:

  • Dates and times
  • Where the seizures happened and what you were doing
  • Anything you can remember about how you were feeling before and after. For example, in the lead-up to a seizure, some people report symptoms such as a feeling of déjà vu, strong emotions, or changes to their sense of smell or taste. Afterwards they might experience extreme tiredness, headaches, confusion, or memory loss.
  • The length of time the seizure lasted
  • If you were with someone else at the time, their account of what happened

 

While it might feel odd to film a seizure, many people find that a video recording can also be really helpful for you and your healthcare team. Let your family and friends know it’s OK to film you (after they’ve made sure you’re safe!)

How does everyone track their seizures?

Your first appointment

You’ll see a paediatrician or a neurologist in your local hospital or epilepsy clinic, depending on your symptoms and circumstances. Bringing your seizure diary (if you have one) or a record of your seizures will help you to answer their questions. It can also be really helpful to bring someone you trust along with you for support, especially if it is someone who has seen you have a seizure. The paediatrician or neurologist will analyse all this information as well as your medical history, to work out the best next steps.

You’ll probably be referred for one or more tests or investigations. These might include different types of brain imaging like an EEG or an MRI scan, blood tests or a heart test called an ECG.

What are the steps to getting a diagnosis?

Getting a diagnosis isn’t always easy and it may take some time.  Epilepsy and seizures are complex and it can be difficult for doctors to work out what has caused your symptoms.  But you don’t have to wait for a diagnosis to get support. The Hub is a safe and welcoming online forum where you can meet others going through the same as you.

Your paediatrician or neurologist will use their specialist knowledge and skills to investigate your symptoms. If you are diagnosed with epilepsy, this is usually based on:

  • Your descriptions and the details included in your seizure diary
  • The results of tests and investigations like the ones detailed below
  • Anything in your medical history that might point towards epilepsy – such as possible damage to the brain What tests may be needed?

Seizures may be a sign of epilepsy, and epilepsy is caused by unusual electrical activity in the brain. So, tests on your brain are a really useful way to find out more about your seizures. There are a few different types of test that you might have:

This test records the electrical signals in your brain. You’ll have sensors attached to your scalp, which pick up the electrical activity going on in your brain and connect to a computer which records the results.

This is a brain scan that takes pictures of your brain using a strong magnetic field. You’ll lie inside a big tube while you’re being scanned. Sometimes epilepsy can be caused by brain damage, so this test can help doctors find out if that’s what’s behind your seizures.

Sometimes seizures aren’t caused by epilepsy. Or they might look like seizures, but they’re actually something else. To find out more, your neurologist or paediatrician might also refer you for blood tests to check for medical problems. You might be referred for a test on your heart called an electrocardiogram (ECG).

EEGs, MRI scans and ECGs are all painless, straightforward investigations.  But feeling worried or uncertain is completely normal! You’ll be supported throughout by your healthcare team. Don’t be afraid to talk to them If you have any questions or concerns.

 

Why do I need a diagnosis?

A diagnosis isn’t just a piece of paper, or a note on your file. It can be your passport to getting the care and support you need. You may be entitled to all sorts of support to help make life easier, such as:

  • A care plan from your healthcare team, so there’s a roadmap through your treatment
  • A support plan at your school, college or uni.
  • Free prescriptions and NHS dental care
  • Protection from discrimination under the Equality Act 2010
  • Health and social care assessments, to see if you or someone who cares for you could get extra help or benefits

This can be a difficult time, but you’re not on your own. Get advice and answers on anything that’s bothering you on The Hub, or call our helpline to speak to one of our team.