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Diagnosing epilepsy

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

Diagnosing epilepsy

There are a number of medical conditions that can cause symptoms similar to epilepsy, which 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, with dates, times and a description of what happened, and how you were feeling before and after
  • Taking someone who has seen your seizures, or a written description from someone who has seen your seizures, to your appointments
  • Taking some video clips of your seizures to the appointment, if this is possible

Tests used in the diagnosis of epilepsy

The epilepsy specialist may arrange for you to have some tests at the hospital. These include EEG tests and CT or MRI scans. None of these tests can prove that you do or do not have epilepsy. However, they can sometimes give useful information, such as the cause of your epilepsy and the type of seizures you have.

EEG (electroencephalogram)

An EEG test measures the electrical activity that is happening in your brain. During the test, an EEG specialist places harmless electrodes on your scalp, using a special glue or sticky tape. The electrodes are connected to the EEG machine, which records the electrical signals in your brain onto a computer.

An EEG only shows what is happening in your brain at the time the test is being done. It is not able to show what has already happened or what is going to happen in the future. So, if there is no epileptic activity in your brain at the time the test is done, the EEG will show clear results. However, EEG tests can sometimes provide useful information to doctors

CT scans (computerised tomography)

A CT scan is a type of X-ray that shows the physical structure of the brain. During the scan, you'll usually lie on your back on a flat bed. The CT scanner, which looks like a giant thick ring, will rotate around your head, taking X-rays.

A CT scan doesn’t show if you have epilepsy. However it may show if there is anything in your brain, such as a scar, or damaged area, that could cause epilepsy. Not everyone will need to have a CT scan.

MRI scans (magnetic resonance imaging)

An MRI scanner uses radio waves and a magnetic field to show the physical structure of the brain. During the scan, you lie inside the MRI machine, which is a very large tube.

An MRI scanner is more powerful than a CT scanner. It has a higher chance of showing something in your brain that could cause epilepsy. Not everyone will need to have an MRI scan.

Blood tests

These are used 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 are not caused by epilepsy, but another medical condition, such as diabetes.

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

Code: 
B004.03

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 April 2014
    To be reviewed April 2017

Comments: read the 16 comments or add yours

Comments

I cannot find a test to prove I do NOT have epilepsy. I have had 3 seizures in the past 12 years. The first 2 were diagnosed by English hospitals as 'strokes' due to a bleed in the brain. I take anticoagulant pills (because I have a plastic heart valve) and the bleeds were attributed to high blood pressure plus these polls. 12 months ago I had another seizure when on holiday. A foreign hospital did a CT scan and said it was an epileptic attack. It seems I will have to take antiepileptic pills for the rest of my life and be heavily penalised for car and travel insurance. In England I have had EEG and MRI scans. The English neurologists are noncommittal but are continuing the pills. Is there no way of ridding myself of this stigma? They seem to believe the prisoner is guilty unless he can prove he is innocent.

Submitted by Dennis Fuller on

Hi

Epilepsy can be a very difficult medical condition to diagnose. This is because the symptoms of seizures can be similar to a number of different medical conditions. Also, the test that are currently available don’t necessarily prove that someone has epilepsy, or that they don’t have epilepsy. However, the tests could help the specialist to find what the problem is. An EEG will give an abnormal result if someone is having epileptic activity at the time of the test. If a seizure doesn’t happen, then the EEG is likely to be normal. Also, people with epilepsy can have a normal MRI scan. 

Have you asked the specialist you saw in England, why they feel you could have epilepsy? It may be that due to normal test results they can’t give a definite diagnosis but they feel your symptoms point to epilepsy. So, they have given you epilepsy medicines to try and stop your attacks. Some people also find that after, such as, a strokes and a bleed in the brain these could be a cause for epilepsy.

You could ask your epilepsy specialist if it would be alright to try and come off your epilepsy medicine, if they are unsure that you have epilepsy. Then you could see whether they are helping to stop seizures.

If you are having problems with insurers you might want to try the companies we have schemes with, next time you want motor, or travel, insurance.

Rosanna
Advice and Information Tea

Submitted by Rosanna@Epileps... on

Ihave been diagnosed having focal seizures by my Neuro Physician.Reffered for INV MRI.This may be the initial stage .Now I will be extra precautious while driving.Thanks GOD for early detection.

Submitted by MR PORIA on

hi all. i am new to this had a seizure in november 2012 while i was in bed early hours of the morning.bite me toungue and had the shakes.this was my first ever fit. had a mri scan and eeg scan.they both came back as normal. i left it 5 months then had to go back to see my doctor. but 5 days before my opointment i had another seizure. on my first seizure i had an ear infection and a cold. on my second seizure i have had the same symptons cold and ear infection could this trigger off my epilepsy. plus i have never been one to go to bed early at all. and i used to get stressed alot before my first fit. i have been put on medication now for my so called epilepsy and will have to give up driving for a year. i have noticed a small lump under the skin of my nostrul ? could this effect it. with lack of sleep. thanks all for reading. se

Submitted by daniel on

Hi Daniel

The best person to say if there was any connection between you seizures and you been unwell is your epilepsy consultant.  For most people with epilepsy there is no known cause or trigger for them to develop epilepsy or to experience seizures. But for some people there are some things that make their seizures more likely. These are often referred to as ‘triggers’. Triggers are things like stress, not sleeping well and drinking too much alcohol. Some people say they have more seizures if they miss meals.

 You may be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. People can find it really helpful to talk to other people in a similar situation and share experiences.

I hope you epilepsy consultant is able to answer your question. 

Submitted by Diane@Epilepsy ... on

I have had 2 'fits' bit through tonge on 2nd one etcsuppot and I've been told(cant remember ANY of what happened) howling like a animal!!!!! The 2nd one happened in A+E because I'd not felt well at work so went to the hospital.
The most worrying thing I find is that I feel that the NHS as cast me on a dessert island!!!!! Theres no follow up, no help with coming to terms with this AWFUL thing I've been labelled with, and I'm car and motorcycle CRAZY, and also run a building company!!!! I didn't want to go on living when I 1st found out!!!!!!!
The ONLY person that's helped me to sort of come to terms with this is my LOVELY wife Lynda!!!!
Specialist's PLEASE if you read this, Its SO much of a hammer blow, then left on our own to cope with our lives being turned upside down!!!!
Thanks,
Tony

Submitted by Tony Dancer on

My husband had a similar experience to you almost 7 years ago now, he too is a car and motorcycle fanatic. he had his first ever seizure in the middle of the night and was taken to hospital, where he had a second seizure. the diagnosis was made and he came home after a couple of weeks (he broke a shoulder blade during the seizure). We too felt abandoned by the NHS, so paid for a private apt with a neurologist. We ended up seeing the same neurologist that had made the initial diagnosis, who told us, he did not want to see us again until our NHS apt 4 months later as he had nothing new to tell us! We felt as if our lives had been shaken up in a box and spewed back out for us to sort out. I asked for counselling and was told in our area, there's a 2 year waiting list - we still never got it.
Ultimately what I want to say to you and your wife is there is light at the end of the tunnel. Once Andrew's medication was sorted (this did take a while though) our lives regained the balance that we once had. His seizures are fully controlled, he has his driving license again and he is back on his motorbikes (I even took the plunge and took my motorcycle test too and now look forward to our rides out together).
Our lifelines during the worst stage of our 25 year marriage were our GP and Epilepsy Action.

Submitted by Fiona Herbert on

the first in my life "seizure" occurred a few SHORT weeks after the death of my husband of 54 years.
WILL THEY STOP AFTER THE "GRIEVING PERIOD" IS COMPLETE?

Submitted by valerie byatt on

Hi Valerie

Some things can make seizures more likely to happen or trigger seizures. The stress and anxiety of loosing someone close can be a trigger.

Was the seizure a few weeks ago your one and only seizure? If so, some people do have a one off seizure and never have another one. Epilepsy isn’t diagnosed until more than one seizure has happened. If you’ve had more than one seizure it does increase the possibility of having further seizures.

I do hope you’ve been able to talk to your doctor about this. If you feel we can help you any further, do give us a call. We have an epilepsy helpline on 0808 800 5050 (freephone).

I hope this helps.

Rosanna

Advice and Information Team

Submitted by Rosanna on

I am in the middle / near the end of tests to confirm if I have epilepsy, I'm now 36 and for the last 29 odd years I have randomly passed out for no apparent reason, my parents first put it down to one of those things and have kept that opinion. The only reason I am finally near an answer to what is wrong is down to going to hospital with an eight month pregnant wife in tears to try and get someone to believe I wasn't putting it on, that was last November and have had a number of tests and plenty more to come. My symptoms are passing out randomly every few years normally at times of high stress or just after (birth of both sons, on honeymoon, first was about six months after natural mothers death, first ever day of work in a proper job (ie not paper round)) and a few other random times. In the past it has not boffered me that much but this last time it took well over a month to get my memory back which is still not 100% (but not so bad that I am boiling the kettle dry as I was) but this last episode was so bad I have lost the first few months after the attack. Including some of those first few memory's of my second sons birth. My memory is still not great but far better than it was. Has anyone else experienced this and what sort of treatment did you receive, I am just keen to get it finally sorted so one I don't muck up to much more at work and lose my job and more importantly lose any more of those presious memory's with my two boys.

Submitted by Richard on

Hi Richard

It’s good that you are having some tests to see whether you have epilepsy.

Memory difficulties in people with epilepsy are well recognised. In fact, people with epilepsy seek help for memory problems more often than for any other problem.

The following explanations are taken from our memory webpage.

  • Epileptic seizures can affect memory functioning because, in order for memory to work properly, the brain needs continuous self-monitoring. This self-monitoring system can be disrupted during a seizure.
  • Memories before a seizure can be lost, as they have not been fully incorporated into our memory system.
  • During a seizure our memory may also be affected, because a loss of consciousness can interfere with normal brain processes, disrupting the encoding and storage of information.
  • The confusion that can occur following a seizure can also prevent our memory from working properly.
  • Some people with epilepsy can experience unusual electrical activity within the brain between seizures and this can also affect attention and memory functioning.’

If you are diagnosed with epilepsy, hopefully by treating your epilepsy, you will see an improvement in your memory. In the meantime, you can find information about memory improvement and memory enhancement strategies on our memory webpage. If you want to speak with other people with epilepsy and memory problems, you could join our online community forum4e.

If you are diagnosed with epilepsy, you will be covered by the Equality Laws. When you make an employer aware of your epilepsy and the memory problems it’s causing you, they have a duty to do a risk assessment. From this assessment there may be some reasonable adjustments suggested to help keep you in work. Your employer should do their best to make sure that you are not put at a disadvantage because of your epilepsy. Here is more information about work and epilepsy.

Good luck with everything.

Diane
Epilepsy Action advice and information Team

Submitted by Diane@Epilepsy ... on

It's interesting that the EEG is not a guaranteed no to epilepsy. I was given one a number of years back after several suspected seizures, however I didn't have any while I was attached to the EEG. When the results went back the doc said that I definitely DIDN'T have epilepsy and said it was psychological. I'm confused now to say the least! Those notes were misplaced so now that I have had new attacks, they are referring me again! I've had several witnesses now so hopefully that will give a better indication.

Submitted by Lucy Clapham on

I have recently had a seizure during which I had a compound fracture of one of my vertebra due to the spasm of the back muscles. This is only the second fit I have had in 25 years but because I have had 2 I am now classed as epileptic. I had an MRI scan which came back clear but my EEG showed some abnormal activity. I have read now that this is not always a certain diagnosis of epilepsy so I am wondering if I actually am? My first seizure was put down to the fact that I was taking oil of evening primose to help with PMT at the same time as taking the contraceptive pill which is known to cause fits due to the imbalance of hormones. My second fit happened after a stressful train journey which started very early in the morning so I was very tired. I had not eaten and had drunk several cups of strong coffee on the train to 'wake me up'. Could this have possibly been the cause of the second attack and if so does this mean I may not be epileptic despite the EEG? I am taking Lamotrogine to prevent further fits and am not allowed to drive unless I am fit free for 12 months. I am worried that my insurances will now go sky high due to this diagnosis which may be unnecessary. Any ideas please?

Submitted by Cathie Palmer on

Hi Cathie

Diagnosing epilepsy is not something that is always clear cut. A working definition is that it is recurrent seizures. So after 2 seizures it is not unusual that you have been diagnosed with epilepsy. The EEG results would be likely to make a doctor that much more convinced of the diagnosis.

It is unlikely that the coffee would have triggered the seizure. But the tiredness might have. However, this would only trigger a seizure rather than the epilepsy. So there may already have been the likelihood of you having seizures, before the trigger happened. The same explanation applies to the evening primrose and hormone changes.

As you say, once you have been seizure-free for 12 months, you will be able to reapply for your licence. Your car insurance shouldn’t increase then as the DVLA will consider you fit to drive. But if it does, it may be worth shopping around. And checking out the company we work with, in the process.

If you are concerned about travel insurance, we have worked with Insure and go to help them become epilepsy aware and therefore to calculate risk in an informed way.

I really hope that answers some of your questions. 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.

Yours sincerely

Cherry
Epilepsy Action

Submitted by Cherry on

hi
when i was about seventeen i had a fit and some mysonic jerks i was under a lot of stress at the time i had one neurolagist say i was epileptic and another say i was'nt i spent fifteen years on medication though befor i was told i came off of the tablets and have had no trouble for thirty years
in october 2012 i woke for work with a severe pain in the groin and went from october 2012 till october 2013 before surgery cured the constant pain in febuary 2013 i went to my gp for pain releif and he gave me gamapentin 300mg three times a day but after a few weeks i had to go back as it was'nt doing the job i was getting light headed dizzy and blurred vision i drive a van and do roof repairs for a living so they said stop them i stopped the first ok but when i stopped the second i had a fit and evrey time i tried to stop the second i had a fit i've had eight in all and am now told i'm epileptic and they got me to change my tablets from 600mg of gamapentin to 100mg of lamitol this caused fit number seven at this point my heart rate would'nt come down so i got put on beta blockers and when they ran out i had fit number eight all the tests i've have had have all come back clear does this sound like epilepsy it does'nt to me and i now looking at my job witch i am not allowed to do

Submitted by barry malcolm j... on

Dear Barry

This sounds like a confusing and stressful situation to be in. As epilepsy advisers, I regret we can not suggest what is happening to you.  This is something that you will need to discuss with your doctor.

Epilepsy is an unpredictable condition and unfortunately there can be many years between seizures. As there is so much to consider, including your driving and livelihood, it’s important you are being seen by an epilepsy specialist. An epilepsy specialist is generally a neurologist with a special interest in epilepsy. They should review your history and recent events to help diagnose what is happening.

I hope your doctor can give you some answers very soon. If we can be of any more help, please feel free to contact us again, either by email helpline@epilepsy.org.uk or the Epilepsy Helpline freephone 0808 800 5050.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

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