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Focal seizures

When an epileptic seizure starts in one side of the brain, it’s called a focal onset seizure or a focal seizure. Both terms mean the same thing. Until recently these seizures were called partial seizures.

What are the main types of focal seizure?

There are 2 main types of focal seizure.

Focal aware seizures

During a focal aware seizure, you stay fully aware of what’s happening around you. This type of seizure used to be called a simple partial seizure.

Focal impaired awareness seizures

If your awareness of what’s happening around you is affected at any time during your seizure, it’s called a focal impaired awareness seizure. This type of seizure used to be called a complex partial seizure.

What happens during a focal seizure?

What happens to you during a focal seizure depends on which part of the brain the seizure happens in. This is because different areas of the brain control movements, body functions, feelings and reactions. Some people experience just one symptom during a focal seizure, while others experience several.

The symptoms of focal seizures can be split into 2 groups. Symptoms that involve movement are called motor symptoms. Symptoms that don’t involve movement are called non-motor symptoms. Here are some examples:

Motor symptoms

Non-motor symptoms

  • Part of your body, for example one arm, going stiff
  • Part of your body going limp or ‘floppy’
  • Rhythmic jerking in part of your body
  • Brief, irregular jerks in part of your body
  • Your head and eyes turning to one side
  • Lip smacking, repeated swallowing or chewing
  • A jerking movement that starts in one part of your body – usually your hand or face – and then spreads bit by bit to other parts of your body
  • Having repeated movements such as rocking, pedalling or pelvic thrusting
  • Undressing
  • Running or walking
  • Feelings of fear, anxiety, anger or pleasure
  • Changes to your vision, hearing, smell or taste
  • Having sensations of being hot or cold
  • Seeing or hearing things that aren’t there (hallucinations)
  • Feeling like your body is distorted
  • Feeling like part of your body is missing or doesn’t belong to you
  • Feeling or being sick
  • Changes to breathing, heart-rate or skin tone
  • Feeling like what’s happening has happened before (deja vu)
  • Difficulty processing language

 

How long do focal seizures last?

Most focal aware seizures are brief, lasting between a few seconds and 2 minutes. Focal impaired awareness seizures usually last between one and 2 minutes.

What happens after a focal seizure?

What happens after a focal seizure varies from person to person. You might feel fine after a focal seizure and be able to get back to what you were doing straight away. Or you might feel confused or tired for some time afterwards. You might need to sleep.

Some people find they have temporary weakness or can’t move part of their body after they’ve had a seizure. This is called Todd’s paresis or Todd’s paralysis. It can last from a few minutes up to 36 hours, before going away.

How can someone help me during a focal seizure?

You might not need any help from people around you during a focal seizure, especially if it’s brief and you’re aware of what’s happening. But if you’re not aware of what you’re doing you might need help to guide you away from danger and keep you safe. See our first aid information, or ask them to take our short online course which shows them what to do when someone has a seizure.

See this information with references

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 Helpline by email at helpline@epilepsy.org.uk

Code: 
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

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

  • Updated July 2017
    To be reviewed July 2020

Comments: read the 63 comments or add yours

Comments

My wife and I was in bed one morning and she woke up stuttering. She began to shaking and had a loss of speech. She is only 24 so I put aside the stoke theory and noticed it was a epileptic fit. I have been to Afghanistan twice and seen crazy stuff but was never as frightened as I was looking at my wife knowing I can't do anything for her. Reading your document does give so much information on how to help someone suffering with this unfortunate illness. Thank you so much.

Submitted by Tyrone on

I have temporal lobe epilepsy and I can have a period of two weeks of constantly feeling anxious with heightened sense of vision all around me, dressing gowns looking like people, walking feels like running, too scared to go to the toilet by myself, and then during these two weeks, I have spikes of these simple partials with epigastric rising sensation, pins and needles, chills and trembles and more heightened sense of fear that lasts about 30 seconds or so. Does that mean the two weeks are constant auras??! Or simple partials anyway lasting that long with spikes? I have been diagnosed - EEG first time capture and MRI hippocampus sclerosis medial temporal lobe. If I wasn't diagnosed, I could be given a diagnosis of anxiety disorder seeing how long this lasts. Years ago, I had complex partial and absence seizures and one atonic but seems to be all simple partial now. Thank you.

Submitted by Markyjo on

Dear Markyjo
Thank you for your question. It sounds like you have a terrible time when you have these episodes. They must cause you a lot of anxiety and confusion.

Rarely, people can have continual activity that last hours, days or weeks. The word aura is used when the epileptic activity that causes a focal seizure sometimes spreads through the brain and develops into a generalised seizure. The aura is usually brief, but as it is a partial seizure it can last either a few seconds, and rarely for minutes, hours, or even days. So as you don’t go into a generalised seizures, your symptoms are more likely to be partial seizures rather than an aura.

If your doctor hasn’t already done a prolonged EEG, maybe you could ask if doing one during your two week risk period would help them to see exactly what is going on.

Although your type of epilepsy causes you to have symptoms similar to anxiety. It is still possible for you to experience anxiety. In fact, you have a higher risk of being affected by stress, anxiety and depression when you have epilepsy.  If you haven’t already you may wish to view our wellbeing information that has information on anxiety and epilepsy.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. 

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Thank you for advice. It seems then to me then, the epilepsy brings on anxiety for absolutely no outward reason and then the simple partials happen during that anxiety period - I am never anxious like this without accompanying simple partial seizures. I get stressed and depressed but no seizures. Anxiety is triggered by the epilepsy is my view. I always thought auras were short-lived but that they were simple partial seizures in themselves. I don't think these are auras. Thanks for clearing this up.

Submitted by Markyjo on

Am 34 female. I have closed lip schizenaphaly and front left focal lobe onset epilepsy. Need advice. I suffer tonic fits and some others. Starting gettin numb right arm and head feels tingling. Plz help

Submitted by Teresa on

Hi Teresa
It sounds like your epilepsy medicine needs reviewing by your epilepsy specialist, to see if you can get better seizure control. As you will have seen on the focal seizures pages, numbness can be a sign of a focal seizure. And sometimes focal seizures can turn into generalised seizures.

If you are not already in the care of an epilepsy specialist and are in the UK, this is information that tells you how to get a referral or second opinion.

If you are not in the UK, you might be able to get more advice from your local epilepsy organisation.

I hope you get the treatment you need soon.

Regards
Kathy
Advice and Information Team

Submitted by Kathy, Epilepsy... on

Thank I have a review in 2 weeks

Submitted by Teresa on

My partner has just been diagnosed Lfrontal/temporal epilepsy yesterday. I have read your website with a find toothcombe and also downloaded your app. It is such a relief now the formal diagnosis has arrived. It's taken nearly 3yrs for this diagnosis. I would like to thank you for all the info you provide online, app and over the phone. The info is very reliable and correct. Keep up the good work and a whole heartedly big THANKS.

Submitted by Luke on

Hi Luke
Thank you for your comment. Many people tell us that it is tough waiting for a diagnosis. It is great to hear that you feel relieved that your partner has now been diagnosed after waiting so long. It’s great to hear that our information has been helpful to you and your partner too.

If we can be of any more help, please feel free to get in touch with us in the future.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

I had a focal seizure (stuttering attack, just kept repeating the word "I") for 4 minutes in my Doctors office after an annual exam. They acknowledged it was extremely odd, had me make an appointment to see their neurologist and let me leave. Is that standard practice for a family physician? (ie - should they have know this is a per-cursor to a potentially more severe seizure and not let me drive?)

Submitted by Erin on

Hello Erin
Thanks for your message. In the UK it is standard practice for family doctors to refer people who have had a suspected seizure to a neurologist. Most family doctors don’t have a specialist knowledge of epilepsy, and it can be difficult to tell if symptoms are due to epilepsy or something else. You’ve not said if you’ve been diagnosed with epilepsy, but if not you might find our information about diagnosing epilepsy helpful.

If you have a seizure it is your responsibility to stop driving and let the driving agency know. We’ve got more information about reporting seizures to the driving agency.

I hope this helps. If you have any further questions please feel free to get in touch.

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Hello
I have juvenile myclonic epilepsy but just lately I have been having feelings like I'm going to have a fit (but it doesn't happen) but the feelings are very strong and takes a while to go away, I notice I bite my lip with nerves when this happens....... It actually feels like I'm watching myself have a fit that's the only way I can describe it and it's a horrible feeling
Any advise?
Lesley

Submitted by Lesley on

Hi Lesley

This sounds scary for you. If you have noticed a change in your seizures, or have any worries about your epilepsy it would be worth you talking to your epilepsy doctor. They can then talk to you about what is happening and check that any treatment you are getting is the best one for you.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen@Epilepsy ... on

My three year old has been having what we thought might be absence seizures for the last year and a half. I have taken him to the doc and he has seen a nuerologist but they just said 'catch them on camera'. This is impossible as they are very fleeting. He just looks up and to the side for a few seconds, stops what he is doing or saying and then comes back to us and seems fine. He has already done this 4 times before lunch today. We have started keeping a diary of episodes and presumably we miss many of them as we are not watching him like a hawk all the time. Do you know what this could be?Should I press for an EEG?

Submitted by AmandaB on

Hi Amanda
It can be very difficult catching suspected seizures that only last for seconds or minutes.

Keeping a diary is a very good idea. Could you try using a video recorder set up and try do some activity in the camera range with your son. But even this might not work.

The diagnosis of absence seizures is usually suggested by the history. The doctor can ask the child to hyperventilate (over-breathe) for three to four minutes while counting out loud. This will trigger an absence seizure in over 90 per cent of children with typical CAE, and is important in making the diagnosis.

An electroencephalogram (EEG) test is useful in confirming the diagnosis. So it may help to ask your son’s neurologist if he can have one done.

I hope you get a diagnosis for your son’s symptoms soon. It can make things easier when you know what you’re dealing with.

Regards
Diane Wallace
Advice and Information Team

Submitted by Diane, Epilepsy... on

Hi my son has focal epilepsy could you tell me because I think he has vacant episodes he fitted on day 2 of birth HE HAS TEMPORO EPILEPSY could you tell me if this can happen thank you as i tell the consultant but he seems like not bothered

Submitted by tanya on

Hi Tanya
Some people can appear vacant or confused during a focal seizure, so it’s possible these episodes could be related to your son’s epilepsy. You could try filming one of the episodes and showing the consultant. This would help them to tell if the episodes might be related to your son’s epilepsy or down to something else.

I hope this helps. Please feel free to get in touch if you have any further questions.

Grace
Epilepsy Action Advice and Information Team

Submitted by 37204 on

Hi I had a strange day today. was about to attend a gym class , suddenly started to feel a sensation of full heavy sickness things about me seem weird and I'm feeling dazed . Got up to the room where the gym class was and the instructor knew I didn't look myself. Was very teary and shakey. Went to leave got down the stairs, was trying to ask gym staff to help in arranging a taxi. everything was mixed. Speech wouldn't work properly. Apparrently all this confusion, dazed, strange behaviour went on for 20 to 25 minutes. Please help what was this ?
I usually have complex partial seizures / secondary generalised, I ve been told I'm unconcious for 2-3 minutes and then I always ask for the toilet when coming round.

Submitted by Mandy on

Hi Mandy
That sounds a really frightening experience. The way  seizures affect a person depends on the area of the brain where the burst of electrical activity happens. It sounds as though you might have had a complex partial seizure, which has just happened in a different way to what you have experienced before. Of course, it might not be related to your epilepsy at all, so maybe you could contact your epilepsy nurse or epilepsy doctor to talk through what happened.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

My son, 23 years old, has was diagnosed with epilepsy 7 years ago. He is taking Kepra and Tegretol and his seizures controlled. However, from the very beginning he will rarely take his medication by himself. I or my wife have to remind him each and every time and that also a few times. I have spoken to his specialist about this challenge but I have not been offered any practical advice except telling my son to be more responsible and take his medication on time. Is there any way that could take his medication on himself as I am worried for the long run. Thanks

Submitted by Azad Tariq on

Hello Azad
This sounds like a tough situation to find yourself in.

Some people tell us that they find it helpful to set an alarm, for example on a mobile phone, to remind them to take their epilepsy medicines. Your son may also find it helpful to use a pill container box. This can be a good tool to help him make sure he takes the right medicine at the right time. You can find out more about these by talking to your pharmacist, or by contacting the Disabled Living Foundation.

You may also want to ask our online community forum4e how other people manage their epilepsy medicines. Forum4e is a place where people with epilepsy, or those close to them can share ideas, experiences and get support.

Karen
Epilepsy Action Advice and Information Team

Submitted by Karen, Epilepsy... on

I SUFFER FROM EPILEPSY &TOOK A SEIZURE ABOUT A MONTH AGO IT SAID WAS TODDS PARALYSIS BUT LOOKED LIKE JACKSONIAN

Submitted by PETER BOYD on

Hi Peter
I hope you have fully recovered and the doctors are looking at your treatment to try stop further epileptic activity.

It would be best to discuss your concern with your epilepsy doctor. They should be able to explain why they though it was Todds paralysis and not Jacksonian.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Sacha on

I suffered from a brain injury and have been telling the doctors that my eyes are not registering what they see to my brain. I have also been suffering severe headaches and dizziness but all the doctors want to do is give you tablets. My sleep is also non existent so they just give you sleeping pills. Please help.

Submitted by Caroline on

Hi Caroline
That does sound like a difficult situation for you.

There are a number of reasons why you may have problems with what you are seeing, with headaches and with lack of sleep. Any of these could be related to your brain injury, or the medicine you’re taking or how stressed you’re feeling about your situation.

And if you’re taking more than one medicine, there may be some interaction between these different medicines.

Clearly you’re not happy with the treatment you’re getting. I’m not sure whether that is with your GP or your neurologist or both.

If it’s your GP you could try seeing a different one, or if that doesn’t work, you could talk to the Practice Manager at the surgery about your concerns.

If it’s the neurologist, you could try asking for a second opinion.

If it’s everyone and you’re not sure where to start, then maybe PALS would be a good place for you. This is the Patient Advice and Liaison Service should be able to help you check you’re getting the best treatment you can.

Also can I just check you know about Headway. They support people with brain injuries. Their helpline number is 0808 800 2244. They may also have suggestions for you.

I very much hope things improve for you soon. 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 Advice and Information Team

Submitted by Cherry, Epileps... on

My wife is 34 and has recently had 2 seizures in her sleep. I have noticed her lip smacking and swallowing repeatedly in her sleep but didn't realise this could be a sign. She has no history of epilepsy or any other medical issues that would explain this and nothing was found in the tests and scans that were carried out by the hospital. She is seeing a Neurologist soon and has been prescribed epilepsy medication as a precaution.

As her seizures have happened at night, if I notice her showing the signs again is there anything I can do?

Submitted by Andrew Willans on

hi.. I am writing this for my husband .. He suffers epilepsy since last 9 years and is on medication. He used to have epileptic seizures like once in a year or so.. And all the seizures except the first one happened during sleep. But the problem is I noticed a very mild kind of seizure like activity which lasts for about 20 or 30 seconds which is not felt as a major thing. This is very silent kind of activity and he returns to sleep soon after that. Some times he wakes up during night completely disoriented usually goes to the bathroom undress himself as if he is going to take bath.. I console him then and returns to bed and he goes back to sleep in short time. And he s unaware of this when he wakes up in the morning and does usual work like any other normal ones. Please advice me on this. He's already on Eptoin, lobazam and levipil medication. Lobazam and levipil was added to Eptoin when I told the neurologist about this mild kind of seizures and disoriented wake ups. These happens ones or two times in a month. Please help.

Submitted by liya on

hello i am 28 yrs old work as a roofer and today i woke up feeling fine as usual went to work as i got there had a fag as i smoke then got on the scaffold started orking then started felling light headed so i crouched down thinking it was head rush from nicotine as it passed i stood again to carry on with work the collapsed and had a fit the lad said they had to stop me from swollowing my toungeas a result chewd my tounge open, was just wondering whever these symtoms relate to this epilepsy information many thanx elliot davies..

Submitted by elliot davies on

Hello Elliot
This sounds like it must have been scary for you.

It is difficult to tell for definite from your message what type of seizure you had, but it may have been a tonic-clonic seizure. During this type of seizure a person loses consciousness, their body goes stiff and they fall to the floor. Their limbs will then jerk, they may bite their tongue and clench their teeth or jaw. I am sure your colleagues may be able to tell you if this is what happened.

If this is the first time you have had a seizure, it would be worth you talking to your GP about it. They can then refer you to a specialist doctor if necessary, in order to try to find a possible cause for what happened. Having a single seizure does not mean you have epilepsy. It is possible for a person to have one seizure in their lifetime, yet never have another.

It would also be worth you talking to your employer about what happened, as having a seizure whilst working at heights could be dangerous. Your employer should do a health and safety risk assessment with you. This will help them to identify if there are any adjustments needed to your role whilst your doctor tries to find a cause for what happened.

If you would like to talk more about what happened, or if we can be of any more help, please do not hesitate to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

My daughter is 6 years old ,. she have Arachnoid cyst in brain . she is taking valparin 200 mg syrup daily twice. recently her index finger is locking for 15 to 30 sec and then it is coming to normal . from 15 days it is continuing daily 4 to 6 times.

Submitted by r sudhakar on

Hi Sudhaker

Thank you for your comment about your daughter.

As trained epilepsy advisers, we can give general information on epilepsy and related issues. But we’re not able to diagnose what is happening with her finger. If you haven’t already, it would be best to talk to her doctor.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Hi, My partner had a scary 'episode' last Saturday, which after reading your information above sounds very much like it could have been focal seizures in the temporal lobes. He was in hospital for 3 nights and they did blood tests, CT scan, Lumbar puncture, MRI - all of which thankfully came back clear. I was very concerned when they sent him home as he his having problems with his memory where he is waking up thinking it is Sunday, and can't remember anything from after the initial episode, this is still the case. Whilst in hospital no one mentioned epilepsy. They said they would refer him for an EEG but they don't know how long it could take.
I took him to see his GP who explained the EEG would be looking for epilepsy and she signed him off work for 2 weeks and asked me to work from home.
My question is, is this memory loss normal? The GP said he is probably having seizures over night which is why his memory is resetting. Should the seizures not have stopped by now? Is it worrying that this is still ongoing from the initial episode? I feel pretty helpless and he is getting more and more distressed with each day I have to tell him he's lost.
Many thanks.

Submitted by Kirsty on

Hello Kirsty
I can hear that this has been scary for you both.

It is good to hear that your partner got checked out and that he has spoken to his GP. Although it is good that he is being referred for an Electroencephalogram (EEG), it is important that his GP also refers him to a neurologist so that he can try to find a cause for what happened.  Maybe you could ask your GP for an urgent referral, as the National Institute of Health and Care Excellence (NICE) guidelines says a person should be referred to an epilepsy specialist within two weeks after a first seizure.

Seizures can affect memory because for memory to work properly the brain needs to continuously monitor itself. Seizures can interfere with this self-monitoring process in a way which is noticeable for a person. Although your partner has not been diagnosed with epilepsy, it may reassure you to know that some people do find that their memory improves as their seizures become more controlled. While a memory problem cannot usually be cured, it is possible to adapt, making it easier to cope and live a relatively normal life. Hopefully this is something you can explore further with the neurologist and his GP.

If your partner is diagnosed with epilepsy, the neurologist can then explore treatment options with him. If it is epilepsy, it is likely to be treated with epilepsy medicines. If it is not epilepsy then the diagnosed condition will be treated.

A person may have seizures in their sleep and not be aware of it. Often it may be their partner or a family member who alerts them to it, or they may notice that they wake up feeling more tired than usual or have injured themselves. It is possible that your partner may continue to have seizures until he receives a diagnosis and the symptoms are treated.

There is a lot of information here which may feel overwhelming. If you would like to talk to someone about this please do not hesitate to get in touch with our helpline team. We can be contacted on freephone 0808 800 5050 Monday to Friday 8.30am to 5.30pm.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

In addition to having JME, is it also possible to have simple partials in several lobes?

Submitted by J.S. Tylor on

Hello

Yes it can be possible for someone to have focal (partial) seizures in addition to having JME. Although focal seizures don’t happen to people who only have JME, it can be possible for someone to have more than one type of epilepsy at the same time.

Grace

Epilepsy Action Advice and Information Team

Submitted by todd at Epileps... on

For the last two days my motor skills have been as if I was very drunk and it has felt like my eyes were moving ,but when ive asked people they are not. Then this afternoon I've had a seizure where I was sick and wet myself. Any ideas ive only been diagnosed with generalized.

Submitted by Craig Hepworth on

Hello Craig

I can hear that this is worrying you at the moment.

Some of what you have described may be experienced by a person having a focal seizure. Sometimes a focal seizure may act as a warning that a generalised seizure may happen. This is called an aura.

It would be worth you getting in touch with your epilepsy nurse or epilepsy doctor. This will give you chance to talk about what you have noticed and to check that you are still getting the most suitable treatment for you.

If you want to talk more about this, or if we can be of any more help, please feel free get in touch with our helpline team

Karen
Epilepsy Action Advice & Information Team

 

 

Submitted by todd at Epileps... on

Today I was at the shops and started to feel strange and then my eyes started to shake uncontrollably. Could this be a type of seizure?

Submitted by Kirsty on

Hi Kirsty

That sounds unsettling. If you already have a diagnosis of epilepsy, it might be connected. If you have an epilepsy nurse, it would be good to talk to them about it.

And if you don’t have a diagnosis of epilepsy, then I suggest you go and talk to your family doctor about it.

I hope that helps.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by todd at Epileps... on

I Am 26 years old i am affected to focal seizures since i am taking the medicine for focal seizures that increases my body weight i am now nearly 216 pounds(98 kg) though i walk and do some exercise my weight is not reducing what can i do please help me

Submitted by Bharathwaj on

Hi

Some epilepsy medicines do have a side-effect of making someone put on weight. It might be good to talk to your doctor about this. Meanwhile I am linking you to some information which may be helpful for you.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Todd at Epileps... on

I was told more than once that I have had seizures while I sleep. The first time I reported to the DR and no signs were found fourish yrs back. this time I woke up feeling absolutely brain dead and was later told my breathing was laboured and was foaming at mouth during my sleep and I was no responsive ....Is this a seizure , what do I do now??

Submitted by Nancy McGuffie on

Hi Nancy

It’s not possible to say for sure whether you’ve had a seizure. But  I would strongly suggest you go back to the doctor and tell them what has happened. They may want to refer you back to a neurologist.

I hope you get some more information this time.

Regards

Cherry  

Epilepsy Action Helpline Team

 

Submitted by Todd at Epileps... on

I had seizures when I was a baby til 15 yrs old. As I got older, I could sense them coming on. I'd get dizzy and then feel like I was out of my body, and lose consciousness. One specific time I was in school in gym, felt it coming on and asked a friend to change places with me for kickball game. She refused. I have no memory after that, but I'm told when it was my turn (~5 people went) I got up, kicked the ball, took a few steps and collapsed. I woke up with the teacher's pen in my mouth - I had bitten his finger already. I was tested yearly with EEGs and finally they found 'abnormal brain waves' and I was given 90 mgs Phenobarnbital daily (3x). To this day, I have no idea what was wrong with me. My mom said they never told her except to say it was Epilepsy and that I had to be clear for 2 yrs or I'd not be able to drive. "Perhaps I'd get over it with puberty" was one line I recall. I'm now >50... Any ideas? I'd love to have some idea. Thanks - Linda

Submitted by linda-2kids on

Hi Linda
You don’t say what your situation is now. I wonder if you’re still taking epilepsy medicine? And if you had any more seizures?

For 6 out of 10 people with the diagnosis there is no known cause for their epilepsy. Also 40 years ago doctors were less likely to share much information about a diagnosis.

If you are wanting access to your medical records to see if there is any more information on there, I have linked you to the information on how to go about it.

If you are wondering about your current situation then feel free to get back to us.

Regards
Cherry
Epilepsy Action Helpline Team

Submitted by Cherry, Epileps... on

Hi Cherry,
My seizures stopped when I was 15. I was able to get my driving license and I've not had any episodes since then. My mother was specifically told it was not epilepsy, but 'abnormal brainwaves' that should clear up as I got older. Thank you for your response and for the link. I'll see what information I can get, but given it was decades ago, I expect there's very little information.

Thanks again!

Submitted by linda-2kids on

Hi, my husband was diagnosed with complex partial seizure 16 months ago. These presented with him passing out and being extremely confused when coming round. He was admitted 3 times to the cardiac ward as they said it was cardiac. He was diagnosed with sick sinus syndrome and a pacemaker was inserted. This they said would end the passing out and it did. However things were still not right. He stopped passing out but continued having these strange staring episodes and being extremely confused after and being an ex nurse we went to a neurologist privately and with my history complex partial seizures were diagnosed. CT scans and MRI normal. He was put on Lamitrogene 50mg bd and has been fine for 16 months, until our holiday in Cornwall this year. His driving licence we surrendered for 12 months but got it back 6 months before we went and no issues driving perfect road sense and a safe driver. However since these started it has affected him remembering directions to places, he was excellent at this never ever could not tell you which way to go. We got to Cornwall fine although he did write down motorways but didn'tneed them. It was getting about whilst there. He could not remember places and got himself so stressed out whilst there he had a very very brief I would say focal seizure as just stared and unable to speak. It lasted seconds but resulted in his licence being list for another 12 months and neurologist has upped medication to 100mg bd. It was stress and anger of him not knowing his way round as had been going to the same places for last 20 years. Is this normal. My husband is 68 and other than this and the pacemaker which is fine he is fit healthy and has a healthy life style. His memory other than directions is first class

Submitted by K Mayhew on

My 15 year old daughter was diagnosed with Panayiotopoulos Syndrome five years ago after an initial (almost catatonic) absence of about seven and a half hours. she has been medicated ever since. medication has changed from liquid to capsules and through three different types. She is currently on Cepra. All episodes have been absences until earlier this year when she had two tonic clonic fits, one in the swimming pool and another in the kitchen. We have recently seen a Consultant Paediatric Neurologist for a second opinion, as opposed to the Paediatric generalist we had seen locally. he suggested that a more realistic diagnosis now would be one of focal seizures. He has doubled her meds dosage in an effort to see an end to the seizures and she has been several weeks fit free since then.

Just when we were beginning to think we were beginning to get her seizures under control she has today had a lengthy tonic clonic fit after returning from school.

We are really concerned about leaving her alone now, about her schooling and her future. We have no idea what causes these fits, what we can do to mitigate them, whether they can be controlled and so many other questions.

Since beginning to take the meds five years ago her weight has ballooned and she has yet to have proper periods.

Can you offer any advice or words of comfort please?

Submitted by Peter Howard on

Dear Peter

This sounds like a very confusing and scary time for you and your daughter. Living with the uncertainty of epilepsy is difficult.

We have general information on treatment that you may find helpful to view. It may help you raise some questions next time you see your daughter’s neurologist.

We also have information on epilepsy in school, safety and aids to help with safety. As you have various issues that concern you, maybe it would also help if you spoke with our helpline team, rather than us trying to help you on the website. If you would like to do that, please contact the Epilepsy Helpline freephone 0808 800 5050, and we will talk about your concerns with you. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

I wonder if it may help you and your family to talk to others who understand what you are experiencing. If you think this could help you, you may find some of our services helpful. Such as our local groups, including coffee and chats, our forum4e online community, facebook and twitter.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane-Epilepsy ... on

Hello, Epilepsy Action. This is a test.

Submitted by Graham Goodwin on

I had Meningitis when I was 2. I'm now 52 and developed Epilepsy 7 years ago. I've heard that there is a link between having had meningitis as a child and epilepsy in later life. Do you have any information about this? Thanks.

Submitted by Elaine McElhatton on

Hi Elaine

 

Yes, an infection such as meningitis can cause epilepsy to develop at any age. You might want to contact Meningitis Now in case they have more specific information.

 

Regards

 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Can anyone inform on abdominal seizures.

Submitted by Deborah Ravago on

Hi, my son is 9 and has not yet been diagnosed. He started having seizures 5 years ago. Over time I am starting to piece together what I think are partial seizures which sometimes turn into generalized seizures. there are many days though, almost everyday where he complains of not feeling right, mostly he gets spells of extreme nausea, sometimes he goes pale and feels like he's going to loose consciousness but he doesn't, and sometimes he has visual disturbances, his vision goes blurry sometimes and he just can't see right, sometimes he describes it like the thing he's looking at looks like it is raised off of the table. So if he was looking at his book on the table he feels a weird sensation in his brain kind of like electricity and then the book looks like it's closer to his face than it is. He said it's hard to explain. When this happens it only lasts seconds. When the nausea type happens it can lasts minutes. So what I am wondering is if these are partial seizures, and what type of partial seizure is it. Many times after he comes out of a generalized seizure he gets extremely sick and throws up a few times over a few hours and then starts feeling better and sometimes a headache around the forehead area follows. I am trying to find out exactly what type of seizure he's having and exactly what part of the brain is being effected which causes him to have those bouts of vision disturbances and at other times the nausea. All his eegs and his mri looked normal, so no help there. I appreciate any help with diagnosing this, as his neurologist just wanted to put him on a broad spectrum type medication, and I haven't yet because I would prefer knowing for sure what type of seizure he is having before starting him on meds. Thanks for your help!

Submitted by Lindsay on

Hi Lindsey

Thanks for your message. I can understand you must be worried about your son and you want to know what type of seizures he’s having.

From what you’ve described, it sounds like your son could be having partial seizures, also called focal seizures. There’s also a type of childhood epilepsy called Panayiotopoulos syndrome that can have symptoms similar to the ones you’ve described.

The symptoms of seizures can vary depending on what lobe of the brain is affected. But even if your son’s seizures can be diagnosed as happening in a particular lobe of the brain it’s unlikely this would change the decision of what medicine to prescribe. This is because there aren’t any epilepsy medicines that are targeted to treat seizures occurring in a specific lobe of the brain. Most epilepsy medicines either treat focal or generalised seizures, or are designed to treat both.

Many parents find the decision about whether or not to let their child take epilepsy medicine difficult. But for most children with epilepsy, the benefits of taking medicine outweigh the potential negatives. This is because seizures can be unpleasant for the child and can be dangerous. And if they happen frequently they can affect learning. Have you tried talking to your son’s neurologist about your concerns? They should be able to answer any questions about your son’s treatment, and explain why they think the medicine they want to prescribe is right for him.

Grace

Epilepsy Action Helpline Team

Submitted by rich on

My partner makes fish like movements with his mouth & says he's not aware & often wonders why his jaw hurts! Could this be a form of epilepsy? He refuses to go to the Drs! Any advice would be greatly appreciated please.

Submitted by Cheavey on

Hello Cheavey

 

I am not able to say whether what your partner is experiencing is a seizure. It is possible for a person to have lip smacking movements and altered levels of consciousness during a seizure though. The short videos in our first aid information show you some examples of what may happen to a person during a seizure.

 

It would be worth your partner talking to his GP about what has happened, although I can hear he does not want to at the moment. If he does decide to talk to the GP, then the GP may refer him to a specialist doctor, usually a neurologist. You can find out more about how epilepsy is diagnosed on our website by following the link included in this message.

If either of you would like to talk about what happened, or if we can be of any more help, please feel free to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by rich on

Baby cried late at birth. He had seizers on 2nd day. Then from 1month till now 4th month he is having seizers quite frequently. Doctor advised phenobarbital and livitracitam syr. But the seizers are not in control. He is having quite frequent seizer. Is it curable in long term. What would happen long term. Please advise if it would be cured at he adult age.

Submitted by Uttam Das on

Hi Uttam

It must be very difficult to watch this happening to your baby and have all those questions.

It can be difficult to make an accurate diagnosis of exactly what is happening for a baby. Our information on epilepsy in babies will tell you more about this.

Until the doctors can be sure about what is happening for your son, it won’t be possible to say what might happen for him in the future.

If your baby is diagnosed with a particular childhood epilepsy syndrome, then we will be able to give you more information about these.

Regards

Cherry, Epilepsy Action Helpline Team

Submitted by Cherry@Epilepsy... on

Hi there
My son had a brain abscess in his right frontal lobe when he was 9 years old (6 years) ago. He had an operation, and subsequently developed Epilepsy. (Tonic clonic & complex partial seizures.)
His seizures have been well-controlled with Phenytoin. He is now 15, and has suddenly been displaying some really strange behaviour. He has these "episodes" in which he "checks out" and forgets where he is and what he's doing. He is still completely conscious, can speak (albeit rather aggressively) and move normally. He does something completely random, and then "comes back", can recall everything, but doesn't know why he did it. For example, we went to a school concert, and he suddenly (aggressively) decided that he wasn't going to sit with the family. He plonked himself down next to a stranger a few rows down from us. After a few minutes, he turned to find us and came back to join us. He said that he had no idea as to why he'd done that.
This week, in the first lesson of the day, he turned and ran out of school, thinking it was hometime. Confused, he found himself sitting on the pavement outside school, and had to go back in and try to explain. There have been other incidents as well.
Is this a type of seizure? Please help! Worried Mum :(

Submitted by Rose S on

Hi Rose

It’s not surprising that that feels worrying for you and for your son.

I think it might be a good idea to get back in touch with the neurologist about this.

He might need some more tests doing, or an alteration of his epilepsy medicine.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi. I hope someone can maybe answer a couple questions, if not I'm reaching out to see if others have same experience. Its just been discovered that my 15-year-old daughter has what a neurologist says are focal seizures. They're very brief and no one has really seen them happen, but this is being diagnosed based on HER experience. I believe her, but I'm fearful to put her on the meds straight away, wondering if there's ANY possibility it's something else. She's had a normal EKG and EEG. She has an MRI for this friday, but doc says she would diagnose this even if that comes back normal. So, I'm very hesitant. My daughter is basically experiencing static feelings in her head and then feeling a sway and like she's going to pass out, but doesn't and feels displaced from her body. She's had multiple respiratory colds this year. Could this be as simple as an inner ear problem? Doctor does not think it's syncopy and all blood work has come back normal as well. Is there any reason for me to doubt this diagnosis based on just a clinical workup from my daughter's description? These only happen once or twice every few weeks (6-7 total within 2 months)...no pattern. The doc already wants her on meds and I'm just kind of reeling from the idea this is what it is.

Also, she has been extremely tired lately. Falling asleep during church, after school and very lethargic at other random times. She doesn't typically sleep during the day. She's a teenager, has been her monthly cycle, so I kind of chalk it up to that, but it does seem abnormal lately. Could this have anything to do with seizures? She says she doesn't feel anything different, other than very tired with these last two sleeping episodes.

Any guidance appreciated.

Submitted by Heather Tudor on

Hi

That’s a difficult situation to be absolutely sure about. 

Epilepsy is defined as recurrent seizures. So the consultant probably wants your daughter on the epilepsy medicine because of the number of seizures she has had.

But I can totally understand your concern about this. 

Here is our information about diagnosing epilepsy and about epilepsy medicines

It would be worth checking with the consultant about exactly why she feels  it would be best to start your daughter on epilepsy medicine at this point. One possible reason could be to prevent her having a tonic-clonic seizure

One option would be to wait and see what happens. If you are able to observe any of these episodes, or particularly if you were able to video any of them to show the doctor, that could feel like more conclusive evidence.

If your daughter is getting enough sleep at night and still feeling sleepy during the day, then that is also a concern. The only problem here is that so much can change for teenagers in terms of their physical and emotional wellbeing that it is sometimes hard to be exactly sure what to pay most attention to. But there is a possibility that she is having sleep seizures. This could explain her tiredness during the day.

I do hope you get to settle with a decision about the epilepsy medicine that feels right for you and your daughter.

Meanwhile here is our information for young people with epilepsy: https://www.epilepsy.org.uk/info/children-young-adults/young-people 

Regards 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on