Getting a diagnosis
Introduction
If you think you might have had an epileptic seizure you should first consult your family doctor. If your family doctor thinks that you may have had a seizure, they should refer you to an epilepsy specialist, usually a neurologist. In some areas of the UK there are dedicated epilepsy clinics that offer extra services in addition to consultants with expertise in epilepsy. These can include a counsellor or an epilepsy specialist nurse.
The diagnosis of epilepsy is mainly based on the description of the seizure given by the person themselves and any eye witness accounts. There are also hospital tests that can help the doctor in their diagnosis, although not everyone will necessarily be required to have every test. At the moment, there is no single test available that can say if someone does or does not have epilepsy.
The tests
EEG (electroencephalogram)
The EEG is a painless investigation that tells doctors about the activity of the brain. During an EEG, electrodes are placed on the scalp using a special glue or sticky tape. These electrodes are connected to the EEG machine that records - on paper or computer - the electrical signals from the brain.
During the test you are asked to do things such as open and close your eyes, breathe deeply and look at flashing lights. If your seizures appear to be connected to your sleep pattern, it may be decided to record an EEG during sleep or after a time of being deprived of sleep.
It is important to remember that an EEG only shows what is happening in the brain at the time it is being carried out. It cannot show what happened yesterday or predict what is going to happen tomorrow. An abnormal EEG does not necessarily mean that someone has epilepsy and a normal EEG does not necessarily mean that someone does not have epilepsy. However, it is a common test in investigating epilepsy and can be very helpful to doctors.
CT (computerised tomography)
This scan is a type of X-ray that looks at the structure of the brain. It does not show if someone has epilepsy but it may show if there is an abnormality that could cause epilepsy. It will not be appropriate or necessary for everyone to have a CT scan.
MRI (magnetic resonance imaging)
Like the CT scan, the MRI can show if there is a structural cause for a person’s epilepsy. However, the MRI is a more powerful machine, so it may pick up abnormalities that the CT scanner may not detect. The MRI uses radio waves and a magnetic field, rather than X-rays.
Other scans
Other scans that are sometimes used are PET (Positron Emission Tomography) and SPECT (Single Photon Emission Computerised Tomography). In both of these a fluid is injected into the bloodstream that produces a picture of the blood flow. These investigations are mainly used when epilepsy surgery is being considered and, even then, only in a very small number of cases.
DTI (diffusion tensor imaging)
The DTI scanner, which measures the movement of water in the brain to detect underlying abnormalities, has been found to pick up abnormalities in some cases where an MRI has failed to do so. There are only a few DTI scanners in the UK, and this investigative technique is still being developed.
Blood tests
These check your general health and look for other possible causes of the seizure, such as an underlying disease or condition.
Questions you may be asked
The doctor will ask questions to help with their diagnosis. Here are some examples of questions they may ask you.
- How did you feel before you had the seizure, for example hot, cold, hungry, tired etc?
- Did you experience any unusual symptoms beforehand, for example nausea, dizziness, chest pain?
- Had you drunk any alcohol or taken any drugs of any kind?
- Did you have any warning beforehand? If so, what?
- Do you remember anything about the seizure? If not, what happened when you came round?
- Did you fall over and/or injure yourself?
- Were there any symptoms after the seizure?
- How many seizures have you had?
- Are there any other factors which could suggest epilepsy, for example, head injury, previous seizures, other people in your family with epilepsy?
If someone witnessed your seizure and they can come with you to the appointment, the doctor may also ask them some questions.
- What were they doing when the seizure started?
- What exactly happened when they had the seizure?
- How long did the seizure last?
- Did they appear confused after the seizure?
See also
Further information on this is available from Epilepsy Action by using the Email Helpline or if you live in the UK, by phoning the Freephone Helpline on 0808 800 5050.
11 July 2006
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
- Live online: Tuesdays and Thursdays 1230-1330 UK time
Twitter Updates
Epilepsy Action blog
Comments
I was told that I have epilepsy 7 years ago by a neurogist in Mchenry County. She left the practice. I cannot find my records now. I have been to other doctors on a public aid card that now tell me I just have headaces. They have done eegs, mri,cat scans. but nothing shows up. 3 times a month usually around the time I have my mentration and when I am tired I will have a period of time that I cannot see out of my left eye. I am totally blind for about 20 minutes. I feel an aura come on. Then my vision goes gray then black. I have a heavy feeling in my head and no head ache. last summer I had a seizure and my heart felt like it was jumping out of my chest. That was an extremely hot day in our trailor. I am a single parent. I work for Chryler in Illinois. A man died 2 years ago from an seizure at work. The work conditions sometime can be unbearable with extreme heat. Another man that was 30 died of a heartattack at work. I do not want to be another person dead on the assembly line at work.
I am a part time temp worker at Chrysler. But what is funny is that when I had insurance I got to see a neurologist and she said I had epilepsy. The crummy public aid doctors in Illinois tell me that I have a headace. Even though I can feel my heart rythom being effected sometimes by the seizures. I also have a small heart murmor. I feel that a heart murmor and epilepsy can be a lethal combination if it is not treated or diagnosed. I am 40 years old. I have had mild head trauma as a child and was in a motocycle accident at a low speed on grass and hit my head years ago. please help.
Ann Williams
My daughter has had epilepsy since she was 2yrs old. She is now 11yrs old .We have been on anti ep meds for 3yrs and still not under control. We have just recantly.had a second opinon and we have been told she has lennox gastaut syndrome and no meds will help her.She has also a heart mumur to only just found . We have tryed about 6 or 7 meds over a 3 year period. Nothing has shown up on her mri scann and blood tests are all ok . We have had about 50 seizures in the last 48 hrs .At present she has a cold so we are treating that as well .Her seziures are at any time but mainly am and pm. We are very weary now and do not now what to do and were to turn .We feel as if we are not getting any where at all .I find our situation very frustrating indeed.We are running out of ideas of what to do to help my daughter in every day life because of her sezures.
i was diognosed when i was 8 and i was so destraught i felt myself feeling faint, but later that day i had a sezire and i still remember it as well as the others when i get stressed it triggers my sizires.
my neurolgist said i my have doesn't think i have epilepsy, but it maybe non epilepsy or migrane.
but need to have more tests cus he isnt sure.
what is non epilepsy?
Hi Sian,
You can find more information about Non Epileptic Attack Disorder here:
http://www.epilepsy.org.uk/info/nead.html
If you have any more queries, please feel free to get in touch with our freephone helpline on 0808 8005050 (UK) or email helpline@epilepsy.org.uk.
Andy
Epilepsy Action
Hi,
I have just visited a consultant and he is testing for possible epilepsy with an EEC and MRI scan, I have had what I call vacant episodes, where I can here and feel things around me, however dont respond or feel like I cant respond, these can last a few minutes and leave me feeling tired and thirsty, can anybody relate to this?
Thanks
jan
the same with me ..when i get stressed it triggers my seizures
i have been having weird episodes, something triggers images or visions that look like animations in my brain which makes me feel like i cant breathe then after i get a headache. i do remember that ive had them but i dont remember what they were about.
the doctors say it could be some form of epilepsy but they are not sure.
does anyone have that sorrt of problem because its really starting to annoy me since ive had them since i can remember.
Janice - how did it turn out? Would like to know if you can spare the time - here is my story
In terms of diagnosis here goes.
Last Monday (28th Sept) I was diagnosed with Epilepsy
I am a 41 yr old happily married father of 2 young children (2.5 yrs and 1 yr old) - I have never been ill in my life and lead a very active one.
I am a UK Sales manager for an automotive company based in Redditch Worcs and kive in Sutton Coldfield West Mids - Journey to office 30 miles when I am in there - the rest of the time I am all over the UK.
I am responsible for 3 area sales managers across the UK.
The background to my diagnosis is as follows:
Have had a very tough time at work over teh last 12mnths, with stress in the role/amount of work etc and to add to the problems a previous employee took out a grievance against me, which ended up with me getting a formal warning and the other person being moved to another role - all of which was based on lies. This obviously has left me upset and very stressed with a huge feeling of being let down by my company.
Approx 6-8 weeks ago I went to my local GP to get checked over in terms of general health and questions regarding memory and something I have always referred to as "Deja Vu".
In terms of health he reported back a clean bill with excellent blood pressure etc - he explained that with stress everyone's memory suffers and it shouldn't be something that I should worry about. In terms of the "Deja Vu" he asked me to explain further.
I went on to tell him that I felt silly talking about it really as I have had it for years and it hasn't been/isn't a major issue. I explained that for 15+ years I have sometimes had a feeling of "being there before" accompanied by a light feeling in my stomach, no loss of conciousness and only lasts 4-5 seconds - all ok afterwrads - this can occur anywhere (except I 've never had one when driving) and has done on/off for as I say 15+ years. With the stress at work however, this has occurred more frequetly up until start of Sept where in a 14 day period I had 6 "Deja Vu's". At the point of talking to the GP they had been fairly infrequent, but more than usual and the main difference on just 2 occassions was a slight (and I mean slight) smell - after telling my wife who is from the medical background, she advised that I tell my GP
Anyway after telling him the above, he told me that I shouldn't have felt stupid telling him and that it wasn't "nothing" - he then referred me to a consultatnt.
After visiting the consultatnt he advised that I needed an MRI and EEG. The MRI took place on the 7th and 10th Sept respectively and in both procedures I had "Deja Vu's" - as I mentioned above Sept was a month where more have occurred than ever before - I put this down to work stress and also the fact that I knew I was going for these procedures - hospitals scare me to death.
On the 28th Sept I went for my results - I was not overly nervous, but I could tell my wife was. The consultant explained that my MRI showed that I had a completely normal brain - no growths etc or problems physically. The EEG however showed the activity of the "Deja Vu" that I had for a few seconds - this he put down and diagnosed as "Partial Seizure Epilepsy. He advised that I should start taking Tegretol in 200mg doses for 2 weeks before I went to bed and then another in the middle of the day - 400mg in total, oh yes and he said I have to do this for the rest of my life.
As you can imagine, both myself and my wife were extremely shocked and upset - for one I had been on the Internet looking up all kinds of horrble facts regarding epilepsy and the impact on me. I started to imagine how this was going to affect my personal/work life, the imact on my poor wife, the impact on the kids, the impact on my body from the drugs etc.etc.
It is only now that I feel a little more settled and can think straight - this week I have arranged for me to see an Epileptic specilaist to give me his opinion and hopefully help me get my driving license back earlier than the current 12mnths that the DVLA insist upon. The company which I work for are busy working out what I can do differently to do my job without driving, or if not define another role - I cannot even go and get the "Friday Night Chinese" that we have had for 10 years unless I walk / cycle 10 miles.
I cannot explain the way I feel at present, but all I will finish by saying is this - the consultant told me that when one of these "Seizures - Deja Vu's" occurs, it imprints a pathway in your brain - my wife explains it better - if you have a stone stuck between your brake disc and pad on your car, when you brake it scores and leaves a mark or scratch/groove - the more you brake the deeper the groove until eventually you need the disc replaced. Well imagine the seizure in those terms - for me the stress has caused the seizure to occur more and therefore it is imprinting a mark in my left temporal lobe (brain area) and if I don't stop the seizure from occurring it could progress to something worse - taking the drug I have been told will stop the "Deja Vu".
Finally, when I was writhing around in bed the other evening contemplating my first dose of Tegretol, my wife asked me what the options were in a stern tone - when I thought about the above and the possible implications of NOT taking it - I took it.
My advice to everyone is to demand an MRI/EEG and get a specialist to determine what is the matter - it may be nothing at all, but it might not and the earlier diagnosed the better. Good luck
By the way if anybody has any similar stories, please share them.
.
Nigel the Partial Seizure Epileptic
To Nigel Duffield,
A huge thank you for your comments, I am a 39 year old woman with 3 young children, I have just been told by the consultant that he thinks I am suffering from Simple Partial Seizures, back in April 08 after a hangover and being quite sick I had my first dejavu episode, although for me its not dejavu as such its a memory flash back, I manage to realise it was an episode from lost, over the next few weeks I had a few milder ones, sometimes just dizzy or just taste. Had all the blood test done and was told next route was neuro, but they had gone so I decided to leave it. Then out of the blue I had two 4 weeks ago, a day apart both when running, and the second was all the auras together, dizzy, taste, vertigo and flashback, I actually had to sit down for 5 minutes as I thought I was going to pass out. So off to the Neuro we went (hubby and I). He didnt explain much but said he was pretty sure it was SPS but I would need an MRI and EEG, but wasn't expecting anything to show up due to the fact I get them so rarely. He did mention anti-seizure medication which I was very hesitant about due to them being 18 months apart, but after reading your comments it has helped me to understand why I might need medication to stop those grooves getting deeper. Your wife explains it really well please thank her. I feel as though someone has broken into my house and taken my security away, I also need to drive, not to work but my husband goes away alot with work and for long periods, so it is going to be extremely hard without a car with 3 young kids, I feel annoyed about it as I have them so rarely but I also have to understand why, just because I haven't had one whilst driving doesn't mean I won't.
Im now waiting for a date for the MRI and EEG and then back to the consultant to discuss medication, once again thank you, I think I am still in the shock stage probably like yourself.
jeanette
I am stuck in confused land. I have been having generalised seizures since June 07-everyone thought it was fainting (GP's, two neurologists and the cardiologist) followed by seizures due to lack of oxygen. Similar to the two people above I feel I need to drive-it completely limits my independence and my use to society without it. I am currently off sick from my last seizure which was so dramatic my collegues thought I was dead.
Additionally I work in a school with children with behavioural difficulties, I love it but don't know whether the county council will let me return to work. Will be distraught as everything that was normal will be ripped up.
Kate
Jan, I can 100% relate to your experience. Total confusion; know what is going on around me but cannot deal with it or respond to it. Then when the blur goes; v. tired.
something triggers images or visions that look like animations in my brain which makes me feel like i cant breathe then after i get a headache. i do remember that ive had them but i dont remember what they were about.
I am 21 and had my first seizure in September 2008. I was hospitalised for 2 months, as I entered "STATUS EPILEPTICUS" and had to be sedated for 3 weeks in order to control it. They found out that I had contracted Encephalitis (inflammation of the brain), but after every scan and test you can think of, they couldn't find a cause for this and still don't know to this day. All they know is that Encephalitis was the cause for my seizures. However, my consultant said she couldn't officially diagnose me with Epilepsy.
Since then, roughly 16 months down the line, I've only had 4 relapses. I was unconscious during seizures previously in hospital, and on one of these relapses I was...but for 2 of them I was asleep and for the other remaining I was totally conscious and aware, but physically couldn't talk or move. It was a weird, but very scary experience. I have no identifiable "triggers" before a seizure, and I don't know if that's because I haven't experienced enough to identify any, but I am convinced they only come on when I have come down with something, ie. stomach bug, cold, etc. and the last one I had was because I contracted Swine Flu.
Before my first episode, I was working 3 jobs and just qualified as a hair stylist from college. I had an active social life and was always out seeing friends. Ever since then, I have lost all of my jobs, my driving license that limits me to when and where I can go and my confidence mostly. I have also lost my confidence in my hairdressing as many of my skills have deteriorated due to being unactive for so long, and am in need of retraining to an extent. I don't feel "myself" anymore. It may sound like an exaggeration, but it has destroyed me. I'm still jobless after applying to many, thought I was in for a chance at a hair salon who knew what I had been through and took me onboard offering support, but dismissed me because I didn't meet their "standards", eventhough I did explain I had lost some skills of mine. I feel like a complete failure. My days all roll into one, job application after job application and just being rejected from all of them. I feel like I am getting nowhere and never will. I really don't know how to deal with it. I find myself just crying for no reason sometimes. I don't know what else I can do.
If anyone feels similar I'd like to know how you're dealing with it all.
Thankyou :)
I feel the exact same way. Mine started 2 years ago when i went to see a 3D movie. I'd never been to one before and after it had finished me and my friends went back to the car when i just collapsed and went unconcious. When i came around i couldnt feel my legs, which now happens every time i have a seizure. After that it was every time i went to a nightclub with strobe lights but i'd just lose feeling in my legs and collapse, totally aware of everything that was happening.I am now 19 and just last month after getting the "all clear", my mum and i were in the car and i lost awareness of everything and was just staring out the window, my legs went heavy and my mum took me in the house where i started jerking violently and shaking my head and making whispering noises to which i have no memory of. I have had a seizure exactly like this everyday since then and my doctor says he thinks it could be photosensitive epilepsy but cannot be sure as every test has come back normal. I have given him videos of when i'm in one and a diary my mum keeps of every seizure i have. I'm getting put on Levetiracetam to try and stop them. I havent been outside on my own for 3 and a half weeks as i feel so panicky about going out on my own. I used to be so confident and bubbly and loud and happy and i have just lost all confidence. I too keep getting rejected from jobs and have been told i wont be allowed to drive due to the type of epilepsy. I dont feel myself at all and dont know when i will again :( But i know how you feel and your not alone :) xxx
Hi Becky,
I am really sorry for what is happening to you and I can only imagine what is like. I have been having these partial seizures for a few years now and after many tests and god knows how many doctors appointments, I was finally diagnosed with epilepsy yesterday. I have to take medication which reduces concentration levels and memory. I haven't worked since I had a really strong crisis two years ago, I quite my job because it was making me nervous and now I cannot get anything else even though I went to a lot of interviews. And the worse is how I got to get these seizures: I was given an overdose injection of anesthesia in a DENTIST. I was top of my class on my degree, used to be the best at everything I did and now I will never be the same again.
WHOEVER IS THERE READING THIS: BE VERY CAREFUL WHICH DENTIST YOU GO TO. THIS WOMAN DESTROYED MY LIFE.