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Diagnosing epilepsy

This information is relevant to people who live in the UK.

Some other medical conditions can cause symptoms similar to epilepsy. This can make it difficult to diagnose. So, an epilepsy specialist will make a diagnosis based mainly on your symptoms.

You can help the specialist to make a diagnosis by:

  • Taking a detailed diary of your seizures to your appointments. This should show the dates, times and a description of what happened, and how you felt before and after
  • Taking someone with you who has seen your seizures. Alternatively, a written description from someone who has seen your seizures would be really helpful
  • Taking some video clips of your seizures to the appointment, if possible

If you are diagnosed with epilepsy, the specialist should classify it by seizure type and syndrome. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. The specialist and your GP should agree a care plan with you that looks at lifestyle as well as medical issues.

Tests used in the diagnosis of epilepsy

The epilepsy specialist may arrange for you to have some tests at the hospital. These are likely to include EEG tests and possibly an MRI scan. None of these tests can prove that you do or do not have epilepsy. The results of these tests can sometimes give useful information, such as a possible cause of your epilepsy and the types of seizure you have.

Electroencephalogram (EEG)/video telemetry

The EEG machine records the electrical signals from your brain on a computer. During the EEG, an EEG specialist places harmless electrodes on your scalp, using a special glue or sticky tape. The electrodes are then connected to the EEG machine, which records the electrical signals onto a computer. 

MRI scans (magnetic resonance imaging)

An MRI scan uses a strong magnetic field and radio waves to create pictures of tissues, organs and other structures inside the body, on a computer. It can show if there’s a structural cause for someone’s epilepsy.

The MRI scan isn’t painful, but it can be very noisy. And some people find it very uncomfortable being in a confined space.  The radiographer who does the scan might need to inject you in your hand or arm with a harmless dye. This is to make the tissue and blood vessels show up as clearly as possible. A few people have had allergies to the dye, so the radiographer will ask if you have any allergies first.

You need to keep still while you are being scanned, otherwise the scan picture may be blurred.

The MRI scan can take up to an hour.

Blood tests

You might be asked to have a blood test. This is to check your general health, and to look for any medical conditions that might be causing epilepsy. They can also be used to find out if your seizures could be  caused by another medical condition, such as diabetes, rather than epilepsy.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B004.05

Epilepsy Action would like to thank thank Dr John Paul Leach, consultant neurologist, Southern General Hospital, Glasgow for his contribution.

Dr John Paul Leach has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated May 2017
    To be reviewed May 2020

Comments: read the 15 comments or add yours

Comments

I have had seizures for 20 years and ended up in hospitals in Europe where I had been working but never got diagnosed. Then 10 years ago I was staying with my sister and had a seizure in front of her, bit my tongue badly and when I regained consciousness I was confused and violent which I never am normally. I remember nothing. I was taken to hospital and released after a few hours and had another seizure an hour later and taken back to hospital where I got a head CT. I took Epilim but found it difficult to work and let it slide. I've had the occassional seizure since but on Sunday I was in a hotel room on my own. I remember 6PM, then waking up on the floor at 10PM having been incontinent, badly bitten my tongue with blood on the carpet. I stayed awake and remember 2AM and then I woke up at 6AM slumped on the bed with the other side of my tongue bitten. I phoned my sister to say I think I had 2 seizures and I kept asking her what time it was then, apparently, I made what my sister called "that funny noise" and she knew I was having another seizure. She called the hotel manager which took a while and they entered the room and I was confused and aggressive with blood everywhere. I ended up in hospital for a week with head CT, chest CT and brain MRI. I'm on Keppra now and I remember nothing. It's so humiliating having these episodes in front of people and knowing nothing.

Submitted by Peter on

my daughter is 13 years old and started having seizures since July this year. she can have any amount a day the consultant said it's pseudo seizures but because her sister and aunty suffer with epilepsy they did an eeg to which I've just got results.she did have a seizure while they did the eeg and said that one wasn't epilepsy but there was some activity which could be epilepsy but can't say because it could be due to family history so we are stuck. I no that people with pseudo can also be epileptic. any info would be grateful

Submitted by Kate harvey on

Hi 

That sounds like an answer it’s difficult to make sense of. Here is all our information about pseudo-seizures. They have many names. We call them dissociative seizures.

Certainly it is possible to have both epileptic and non-epileptic seizures.

If your daughter has an epilepsy nurse, maybe they could help to clarify the situation for you.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My son who is 15 nearly 16 has had 3 tonic clonic? seizures this year, January, may, July. All in different situations. He has recently had an EEG which came back to say he has Epilepsy and they have suggested medicating. He hasn't had a seizure now for 3 1/2 months. We are not disputing the results of the EEG but we are not convinced that a lifetime of medication is the right step at this moment in time. After 1st 2 seizures we were told is was likely to be Vasel vagal syncope and he was fainting, then after the 3rd the EEG was done. As he is going through puberty etc could this not still be the case? We are worried about medicating in the hope that maybe he will not have another, maybe this is hope but we feel it is an easy to medicate and then thats the answer. The reason we are concerned about medication are any long term effects which are potentially still unproven.

Submitted by Rachel on

Hi Rachel

Thank you for your email regarding your son. There is so much to consider when epilepsy is suspected. Epilepsy can be difficult to diagnose and an epilepsy specialist will make a diagnosis based mainly on their patient’s symptoms and any helpful information for tests such as the EEG.

For most children there is no reason for their epilepsy to have developed. But there are some types that develop in the teenage years.

It can be worrying when you’re told your child needs to take epilepsy medicine. It’s understandable the list of possible side-effects worry you and you’d rather your son didn’t take them. But for most children, the benefits of taking epilepsy medicines are greater than the possible side-effects from the medicine. This is because some seizures can be unpleasant and can cause injury. 

With the right medicine up to 70 or 80 per cent of people (adult and children) get their epilepsy fully controlled and lead a normal lifestyle. There is a range of different epilepsy medicines available to treat children. The one your son is given will depend on his age, and the type of seizures the doctors believe he has.

Most people will experience few or relatively mild side effects or no side effects at all. If your son experiences mild side effects, you would discuss them with his doctor.  If he did have a rare severe side effect, you’d contact the doctor immediately for advice on what to do.

If you choose not to start your son on medication, there is no research to suggest his epilepsy would become worse because of this. There are in fact many people who choose not to take medication, especially when their seizures are very infrequent. However, as mentioned above, having seizures can be unpleasant and can cause injury. Also for some people, ongoing activity (seizure) could affect their daily activity and learning abilities.

Some children have a kind of epilepsy which means they have to take an epilepsy medicine for the rest of their life. Others have a type of epilepsy that they might grow out of. Generally, a child would need to be on epilepsy medicine for two years, then the doctor may suggest gradually stopping it.

You can only keep working with your son’s specialist to help with the correct diagnosis and treatment.

If you are unhappy with your son’s diagnosis or treatment, you have a right to ask to for him to see another epilepsy specialist. Although you don’t have a legal right to see another specialist, his current specialist or GP will consider your request.

If we can be of any more help, please feel free to contact our helpline team directly. You can either email helpline@epilespy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane-Epilepsy ... on

Hi Rachel

Thank you for your email regarding your son. There is so much to consider when epilepsy is suspected. Epilepsy can be difficult to diagnose and an epilepsy specialist will make a diagnosis based mainly on their patient’s symptoms and any helpful information for tests such as the EEG.

For most children there is no reason for their epilepsy to have developed. But there are some types that develop in the teenage years.

It can be worrying when you’re told your child needs to take epilepsy medicine. It’s understandable the list of possible side-effects worry you and you’d rather your son didn’t take them. But for most children, the benefits of taking epilepsy medicines are greater than the possible side-effects from the medicine. This is because some seizures can be unpleasant and can cause injury. 

With the right medicine up to 70 or 80 per cent of people (adult and children) get their epilepsy fully controlled and lead a normal lifestyle. There is a range of different epilepsy medicines available to treat children. The one your son is given will depend on his age, and the type of seizures the doctors believe he has.

Most people will experience few or relatively mild side effects or no side effects at all. If your son experiences mild side effects, you would discuss them with his doctor.  If he did have a rare severe side effect, you’d contact the doctor immediately for advice on what to do.

If you choose not to start your son on medication, there is no research to suggest his epilepsy would become worse because of this. There are in fact many people who choose not to take medication, especially when their seizures are very infrequent. However, as mentioned above, having seizures can be unpleasant and can cause injury. Also for some people, ongoing activity (seizure) could affect their daily activity and learning abilities.

Some children have a kind of epilepsy which means they have to take an epilepsy medicine for the rest of their life. Others have a type of epilepsy that they might grow out of. Generally, a child would need to be on epilepsy medicine for two years, then the doctor may suggest gradually stopping it.

You can only keep working with your son’s specialist to help with the correct diagnosis and treatment.

If you are unhappy with your son’s diagnosis or treatment, you have a right to ask to for him to see another epilepsy specialist. Although you don’t have a legal right to see another specialist, his current specialist or GP will consider your request.

If we can be of any more help, please feel free to contact our helpline team directly. You can either email helpline@epilespy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane-Epilepsy ... on

2yrs ago i had a seizure for the first time i suddenly started shaking violently making werd noises and when i tried to talk it was like a foreign language this seizure went on for over 24 hours every few minutes gointo it again and again making horrible noises.my bp was over 290 top no thin botton was 100and something- since that day i have had dailyseizures but despite test eeg it has not shown as epilepsy i regulary have seizures on waking and regulary when i am going of to sleep.being v tired will set them of so will sudden loud noises can this still be epilepsy due to the unpredictability and the facct they occur pretty much daily i cannot go anywhere on my own i have only lost consciousness a couple of times for a few minutes i also go into like a trance is. This non epileptic sezures or epilepsy i also repeat words or smack my lips sometimes during these seizures. Please can you help me i am 67 and do not have a possible psychological reason for these fits

Submitted by Rose on

Hello Rose,

It sounds like you’ve been going through a really tough time. I can understand you want answers about what’s causing your seizures, but we can’t diagnose if they’re epilepsy or not.

It sounds like you’ve been told your seizures are non-epileptic. Being told that your seizures are not epilepsy, and that they have a psychological cause, can be really difficult to hear. They are still very much real seizures, and you deserve to have proper treatment and support for them. You might find it helpful to read our information about non-epileptic seizures (also called dissociative seizures). This says how they’re diagnosed, what treatments are available and where you can get further support.

If you’re not already having treatment for your seizures, it’s worth seeing your GP and asking for treatment.

I hope things start to improve for you soon.

Best wishes

Grace

Epilepsy Action Helpline Team

Submitted by rich on

Is it possible to fake an EEG ? My husband told me you can pretend to shake and act like you are having a seizure and that a guy at work always does this so he will always keep his medicade benefits. Can the brain be faked like this ? He does it to get more $$ and less hours he has to work. He brags about it. Could this be true ?

Submitted by Kate Walsh on

Hi Kate

An EEG is a brain scan test done with electrodes. It gives a print out of brain wave patterns. So you certainly can’t fake that.

But I guess it is possible to fake a seizure if the people around you don’t know what a seizure normally looks like.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

My daughter is 4 and since 7th December 17 n the 21st March 18 she has had 13 fits they said yes it's epilepsy she has had her eeg scan n is now waiting for the results which they have but waiting for the paed to review them n give me an appointment if she does have it can they prescribe her anything due to her age.

Submitted by Sarah Ann Burton on

Dear Sarah Ann

Thank you for your question.

If your daughter is diagnosed with epilepsy the most common way to treat it is with epilepsy medicines. Most epilepsy medicine can be prescribed to young children.

If you wish to learn more about childhood epilepsy, you may find the information on our webpage children and young people helpful. We have information to help you as a parent understand epilepsy, and we also have information to help children understand their condition.

If you have any further questions, please feel free to contact our helpline team directly. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm. 

Regards 

Diane

Epilepsy Action Helpline Team

Submitted by rich on

I had several CT scans and Eeg done but everything comes back normal as per the doctors evaluation but I still keep having seizures.I was told I was okay. WHAT better steps I should take to know the cause of my seizures.I am having amnesia too. They doubt me and I am lost.who would wish to have this illness to oneself.pls guide me.

Submitted by Margot on

Hi Margot

I’m not surprised you’re feeling a little lost with it. I too am a little confused as to what you have been told. Hopefully this information will help to clarify things a bit.

It is quite common for a person to have a normal EEG and CT and still have epilepsy. Very often there is no obvious cause for a person’s epilepsy.

Epilepsy is defined as recurrent seizures. So on that basis it may be possible that you have epilepsy. I am guessing from what you say that you have not been told you have epilepsy. If you had, you would normally be prescribed epilepsy medicine. And this is what would help to control seizures.

But some people have non-epileptic rather than epileptic seizures. These would not respond to epilepsy medicine. I wonder if this is what the doctor has told you?

My suggestion would be to check with the GP whether you do yet have a diagnosis. If you have epilepsy then you need to be seeing a neurologist or epilepsy nurse. If the neurologist thinks you have non-epileptic or dissociative seizures then you could ask the GP to refer you to a talking therapy.

I hope this helps a little. But If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Regards

 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Thank you for your response. I AM GRATEFUL. I went back to see my doctor after I read your reply. It somehow validated me and he finally prescribed Kappra. GOD BLESS.

Submitted by Margot on

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