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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 Action Helpline freephone on 0808 800 5050.

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 43 comments or add yours

Comments

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

I have simple focal seizures that seem to come on clusters and involve a rising from my stomach up through me body, ending in tingling in my fingertips. They normally last up to 2 minutes and then I am fine. I can go for 3/4 months with nothing and then have several. However this week I have had 5 seizures, 2 of which have lasted nearly 10 minutes and have been extremely painful in my chest and back. So much slow that the next morning I feel bruised in that area. I also had 2 when I was asleep which I have never had before. I am not on medication and don't really want to start taking anything. Do you think this is a sign that my seizures are getting worse ? Any advice would be appreciated as I must admit the 2 painful longer seizures have really scared me
Thank you for any help

Submitted by Linda P on

Hi Linda,

We can’t say for sure what is happening for you. But it would certainly be a good idea to talk to your GP about this.

Many people feel reluctant to start taking medicine. But epilepsy medicine is the way to control seizures. https://www.epilepsy.org.uk/info/treatment/anti-epileptic-drug-treatment

So you may want to have another talk with a neurologist about this.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

my daughter has generlised epilepsy and is sayin her legs feel tired all the time and she can be walking and her legs just go in her and she falls over but she hasnt had a fit it just happens when shes walking to or from school and around the house is this because of the epilepsy or should i get her to see some one.

Submitted by sarah on

I have been diagnosed with a concussion, post traumatic vertigo, and constant right frontal lobe seizures. My seizures consist of staring for short periods of time, head rocking which usually then affects my shoulders, sometimes a bit violently, sudden violent jerks of head, neck, and shoulders, shaking of left or both hands which then travels up my arm/arms to my shoulders, and head. I can sometimes feel them coming, by feeling yucky, anxious, or dreadful. I am aware of what is happening during the seizures but am unable to speak. All of this on top of the effects of the concussion, and vertigo, I am basically at home. I do go to work, but am unable to go to crowed, loud places, because of the concussion and vertigo basically. I am taking medications for everything, but I have breakthrough seizures. I was taken off 1 vertigo medication which lasted for 3 days. All the symptoms returned so I am back on that medication and have had a bit of a relapse of all my symptoms. I would just like to know if or when I will get better. I haven’t found anything (which is difficult to read more than a paragraph at a sitting) about healing from seizures or vertigo. A concussion will heal on its own but not a set time. My quality of life has been nill since January of this year. Any positive news for me?

Submitted by Jayne Engel on

Hi Jayne

Thank you for your post. Its sounds like you’re having a difficult time due to health issues. I hope you are still seeing a doctor about this.

Many people with epilepsy respond well to treatment and epilepsy medicine helps them have fewer seizures. It’s not possible to say how long this will take. But for many people, it happens quickly. For others, it takes longer.

There are many different epilepsy medicines available, so it could be worth discussing with your epilepsy specialist if the medicine you are taking is right for you. If you are not under a specialist, you will need to ask your family doctor to refer you. This would usually be to a neurologist. The ideal would be to someone with a specialist interest in epilepsy, as there are many different neurological conditions, and neurologists tend to specialise in different ones.

When someone’s seizures don’t respond well to epilepsy medicine, and they have tried 2 or more different medicines, they should ideally be referred to a specialist epilepsy centre. The epilepsy specialist there could look into other treatment options for you.  They can review your treatment and look at other possible reasons for your seizures to still be happening.

For advice and information about your post traumatic vertigo you could contact Meniere’s UK.

Regards

Diane

Epilepsy Action Helpline Team                                                                                                            

Submitted by Diane-Epilepsy ... on

hell,been diagnosed with temperal lobe epilepsy for just over a year now ,been placed on lacosimide started on 50 mg twice dail the a hundred now 150 mg twice a day but they are not controlling my nocturnal episodes(which are a lot of bed movement shaking pedelling scracthing of pillows shouting falling out of bed getting mildly hurt sometimes and broken sleep. my episodes are getting more regular now).I was trying my best to hide these from doctor and neurologist to get my license back but have come to conclusion that i really need help. please any advice would be welcome.i will advise my doctor as soon as i can get in.please excuse spelling but its going the same way as my speech terrible,stuttering miss wording things that i dont even now that im doing it.plus i was a tattoo artist that three years ago lost his mojo with art,not picked a pen or pencil up since..aged 57 married.

Submitted by kevin davies on

Hello Kevin

It sounds like you have had a lot happen over the last few years. I appreciate it feels challenging for you to talk to your neurologist about this. 

I can also hear that you are finding this lack of seizure control difficult. For some people it can take time to find the right epilepsy medicine, and the right dose. Maybe you could have a chat with your neurologist about the seizures you are having and ask them to review whether Lacosimide is still the best treatment for you. It is possible that a review of your current treatment could have a positive effect on your life.

It is difficult to tell from your message whether you only have seizures in your sleep, or whether you have ever had one when you are awake. If you have only ever had seizures when you are asleep, it is possible that once you have a 12 months pattern of having only nocturnal seizures you may be able to get your driving licence back. If you have had seizures when you are awake and asleep you would need to be seizure free for 12months before you would be allowed to drive again. Whilst you are unable to drive because of your seizures, you are entitled to a free bus pass and disabled person’s railcard.

Living with epilepsy can be tough. It can take time to accept and build it in to your life. You may be interested in taking a look at our online self-management course Epilepsy and you. This aims to give you the skills and knowledge to manage your epilepsy and to get support from other people taking the course.

Our helpline team are also here to listen if you would like to talk to someone about your epilepsy. They can be contacted on 0808 800 5050 and are open Monday to Friday 8.30am to 5.30pm.

Karen

Epilepsy Action Helpline Team

Submitted by rich on

My daughter is 3 and was born with frontal lobe damage. She has been on keppra since she was 9 months old. It's stops the shaking but the only way we know that she has had a seizure is because she is visibly in pain then has Todd's Paralysis. Supposedly this subsides after a maximum of 48 hours, my daughter has been paralysed for 16 days after a seizure before now and the only time that she has recovered in less than 48 hours is when we have given her CBD oil.

Submitted by Gemma on

About 3 years ago I had a partial lobectomy to try and stop my complex partial seizures I was having about three violent seizures a week the surgery work wonders I thank God everyday but now I seem to be having these simple partial seizures they're not nearly as bad as my previous seizures I only get about four a month just makes me a little worried

Submitted by Dan Cunningham on

I think I just had a focal seizure an hour or so ago whilst I was sleeping. I constantly feel itchy after it (although I suspect it’s the anxiety) and my right arm feels numb and weak and I seem to have lost some sensation in it. It’s the same with my left arm except it’s less numb. This is the first time I’ve had one as usually my seizures are just absences lasting a few seconds and I’m usually completely fine after them. I had no idea what had happened to me after the seizure and reading this page helped me calm my nerves a lot and reading the comments made me realise I’m not alone. Thank you very much!

Submitted by Muhammad on

My great gran daughter was diagnosed with focal epilepsy at 3 months old? I thought I would check see what it was and symptom only to see the only 2 she didn't have were the running around and the cloths one .But she is blind, has bowel problems and can't support her head, god knows what else will come along for her, hopefully nothing else

Submitted by Mary young on

My son has a brain malformation and symptomatic epilepsy. He’s just started with focal impaired awareness seizures which like his tonic colonics are prolonged. He’s not written up for emergency meds for this type in his care plan but at what point should I be very concerned that not resolving. One was a 40min seizure, at what point should I get an ambulance. I’ve spoken to epilepsy nurse but all very vague

Submitted by Rebecca Tugby on

Hi Rebecca

Although a focal seizure doesn’t have the same level of danger as a tonic-clonic one, it would still be a good idea to call an ambulance if it goes on longer than 30 minutes.

This is the guidance we’ve had from a neurologist. Hope that helps.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

I have had 'episodes' regularly, but spaced out by up to 9 months since I can remember. I used to wake in the first hour of sleep and have a deep all encompassing fear and feel a restriction in my throat (the fear was as if I was the only person left on the planet). Over the past 6-7 years, this has progressed to a number of periods where I zone out for up to 4 hours but I am still aware of my surroundings, but it's as if my mind is constantly searching for the answer to a very important question, that is on the tip of my tongue and it takes over completely. I also experience very strong deja vu and have done all my life. I have been tested twice for TLE which came up negative (EEG and MRI). I had a long episode a few days ago and it has left me feeling weak and light-headed and scared it will happen again. I also suffer from severe but thankfully intermittent migraine.

Submitted by Daniel on

Hi Daniel

That sounds like a very frightening experience.

I don’t know whether or not you have epilepsy but it is worth knowing that it is entirely possible to have  a clear EEG and MRI and still have epilepsy. Here is all our information about diagnosing epilepsy.

You have had some information about what doctors think it isn’t. But I am guessing you want some answers about what might actually be causing this.

My suggestion would be to go back to your GP and ask to be referred again. If you would prefer not to see the same consultant then it may be possible to request a different one.

I do hope you get some answers soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi,
I have episodes of having a very horrible feeling that comes over me, a strong feeling of deja vu that makes me heave like im going to be sick. It only lasts a few seconds then its completely gone, Its affecting my memory quite badly. I forget directions to places ive been quite regularly, i can watch a film and then a short time later i can watch it again and its like ive never seen it before. I'd be really greatful if you could give me any opinions you have on the symptoms ive stated.
Thank you

Submitted by Clare Moule on

Hi

From what you’ve described it’s possible that you could be having focal seizures, however we’re not able to diagnose your symptoms. It would be a good idea to speak to your doctor about the episodes you’ve been having and the memory problems. If the doctor suspects you could have epilepsy, they should refer you to an epilepsy specialist. This is usually a neurologist with experience of diagnosing and treating epilepsy.

I hope this helps. If you need any further advice feel free to call our Epilepsy Action Helpline on 0808 800 5050, Monday to Friday 8.30am to 5.30pm.

Grace

Epilepsy Action Helpline Team

Submitted by rich on

Recently every day I’ve had like de ja vu visions when I try to think hard to recognise the people my mind goes blank I get confused after the 2minutes and I forget what I was doing my arms and legs start to ache and my head I just wanted to ask if I am getting a partial seizure will it get worse with time or will it get better? I am always worried and started to get anxiety 😭 I have a appointment at the hospital end of July

Submitted by Unknown on

I am 45 years old and just diagnosed with focal onset epilepsy, I’ve had the same ‘funny feeling’ for years but over the last three months I have had three tonic clinic episodes, my consultant says that these funny feelings I’ve had for years are epilepsy what I don’t understand is why it’s suddenly got worse and will I deteriorate further?

Submitted by Chris on

Hi Chris

Everybody’s epilepsy is different, but generally there’s nothing to suggest that epilepsy gets worse with age. Seizure patterns can be very unpredictable though.  For some people with epilepsy there are triggers that make seizures more likely. For example; tiredness, lack of sleep or stress (https://www.epilepsy.org.uk/info/triggers). So if you’re going through a stressful time or not sleeping well your epilepsy can get worse.   I hope now that you’re seeing an epilepsy specialist things improve for you soon.

 

Regards

 

Jess

Epilepsy Action Helpline Team

Submitted by Jess-Epilepsy Action on

Hi, I have been diagnosed with NEAD and have just downloaded a seizure diary app so I can keep a track of my seizures. Do you know if the seizure types are the same as epilepsy as there doesn’t seem to be a specific one for NEAD. Also I would like to download/print a sheet that explains the types of seizures for my family as they/I know nothing about them. So ideally a simple format with titles/types of seizure and descriptions of typical symptoms according to type.

Thank you

Claudine

Submitted by Claudine Delacour on

Hi Claudine 

It can be difficult to understand about NEAD or dissociative seizures as we call them. I have linked you to our information. We have tried to write it in as straightforward a way as possible.

Dissociative seizures can take many forms depending on the individual. And they probably don’t correspond very closely to descriptions of epileptic seizures. So the best thing would be maybe to describe your own seizure types, as well as you can.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi I saw a neurologist a couple of years ago and due to my symptoms he seems to think I have focal aware seizures. I am awake through every one of them. It starts with what I call a “wave of dizziness” which seems to be vertigo and then my right leg starts shaking and my right hand gets fidgety. It only last about 2-3 minutes but I am fully conscious. EEG was normal and so was mri when it was done at the beginning. Neurologist is only going based on my symptoms but sometimes they seem to be all over the place. The only ones that are constant when I have a seizure is the right leg shaking. Could it be something else? I take carbamazepine but I am on such a low dosage.

Submitted by Jamie on

Hi Jamie

Focal aware seizures can have a wide range of symptoms, but most people have a particular set of symptoms that are generally the same from one seizure to another. It’s common for epilepsy to be diagnosed from a description of someone’s symptoms. Tests such as EEG and MRI can provide useful information to help the neurologist make their diagnosis, but if the results are normal this doesn’t rule out epilepsy. This is because an EEG only shows what’s happening at the time it’s being done. And many people with epilepsy have a normal MRI.

As you’re still having symptoms despite taking carbamazepine it would be a good idea to see a neurologist to review your treatment. The neurologist might advise trying a higher dose or different medicine to see if this helps. If you don’t currently see a neurologist about your epilepsy, your GP will be able to refer you to one.

Focal seizure symptoms can be similar to symptoms of other conditions, for example anxiety. If you’re concerned that your symptoms might be due to something else it would be best to discuss this with your neurologist.

I hope this helps.

Grace

Epilepsy Action Helpline Team

Submitted by rich on

I need help!
My name is Charlotte, I get this deja vu impending doom feeling that makes me nauseous after it's over and nobody is helping me I saw a specialist that took exrays of my brain but at the time I wasn't having them so came back as negative. I just got into a car accident yesterday from having those déjà vu's all day and while driving to work fully lost consciousness for a few minutes and came back to a pile wreck of cars.
Everyone is sick of hearing about my problems but they just got worst so I'm reaching out to whoever cares and will help . Thanks.

Submitted by Charlotte on

Hi there Charlotte,
Please don't drive and go to your GP and ask to be referred for an EEG test. Explain what has happened.
I had two accidents in a car and it was only after a head injury at work that things got bad enough for me to seek help.
So, I can understand where you are at with this.
But first port of call is the GP.
I hope that you were not badly hurt, and wish you the best of luck. X

Submitted by Emma on

Dear Charlotte

 

Thank you for your comment.

 

It must be difficult not knowing for sure what is causing your symptoms.

 

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.

They may arrange for you to have some tests that can include EEG tests and possibly an MRI scan. None of these tests can prove that you do or do not have epilepsy. But 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.

 

You might consider asking for a second opinion. You don’t have a legal right to a second opinion, but if you ask for one your GP or specialist should consider your request.

There are 2 ways you can ask for a second opinion:

  • Ask your current specialist to arrange for you to see someone else
  • Ask your GP to refer you to a different specialist.

https://www.epilepsy.org.uk/info/treatment/getting-right-treatment-care-for-epilepsy

 

If you don’t already, it would be helpful to keep a diary of your symptoms to share with any future specialist.

 

 

If we can be of any more help with this, please 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 have a 10 year old daughter she’s seen neurologist since she’s been 3 e.c. g.s all come back normal but lately she’s started complaining off a horrible taste in mouth flashing lights shaking arms and legs a feeling of being far away when this is happening but she can’t talk. I was told it could be epilepsy or it may not there thinking off doing another e.c.g I don’t know what to do for her her hand sometimes twitches I’m struggling what to do for her please could you advise.

Submitted by Sarah on

Hi Sarah

That must be quite distressing for your daughter.

I am guessing that the scan they are talking about is an EEG. If she is having epileptic activity happening in her brain (at the time of the scan) the EEG would pick this up. So it does sound like a good idea.

The symptoms you describe do sound like they could possibly be related to a seizure. But we wouldn’t be able to say for sure.

I do hope the doctors are able to decide what’s happening for her soon.

Regards

 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi,

I have been diagnosed with Functional Neurological Disorder and have been living with this for the past six months. I suffer from seizures, some dissociative however mostly I'm fully present whilst these are happening, they also advise NEAD.

I'm not fully convinced with the NEAD diagnosis and I wonder if this is, in fact, epileptic focal seizures. I suffer from excessive eye flickering, jolting from my waist, my vision will intensively blur, my face will drop on one side sometimes and I twitch in my face a lot. It builds from a pressure type feeling, sometimes nausea and feeling off balance. I have had a clear MRI, however, no EEG as of yet.

I'm a really positive person, however, I'm slowly losing patience. These are happening daily, usually, last for a couple of minutes, sometimes multiple seizures in a day. I always lose my speech straight after, feel like I'm going slightly crazy with confusion and my strength kind of decreases.

I have tried so hard to just get on with it but its already a battle when you're under the FND umbrella, trying to ask them to look at everything else. The seizures are what trigger all my other symptoms, I operate pretty normally otherwise. I don't know what to do and don't know whether I try to ask my doctor to try anti-seizure medication. Its the one things that sets the loss of speech and strength off.

Submitted by Julie on

Hi Julie

Thanks for your message. Those symptoms sound distressing, and I can understand you want to find out what’s causing them.

Although they do sound like possible focal seizure symptoms, they also sound like possible symptoms of Functional Neurological Disorder (FND). A lot of the symptoms of FND and epilepsy can look and feel very similar. This website, written by a neurologist, explains some of the symptoms of FND.

It’s a good idea to talk to your doctor about the symptoms you’ve been having. If the doctor has any doubt about whether your symptoms are caused by FND or epilepsy, they may be able to arrange for you to have an EEG. If someone has an epileptic seizure during an EEG, the EEG will usually show abnormal brain activity. But if the seizures are not epileptic, it’s likely the EEG will be normal.

If the symptoms are not caused by epilepsy, then it’s very unlikely the doctor will recommend anti-seizure medication. But they should be able to suggest other treatments to help. The website FND Action has more information about possible treatments. 

Grace

Epilepsy Action Helpline Team

Submitted by rich on

My sister is epileptic and she is taking Topamax and Keppra. Last time she experienced a complete (not sure about the term) seizure was long time ago. But recently she is getting focal seizures in her left arm that is lasting for hours. It happened like 3 times in one week and last time we took her to ER and they have increased the medicine she is taking. Now after 3 days she is having the same focal seizure and it is lasting for long. What I have read here and everywhere else is that focal seizures last for few minutes only. Is this something else? Is there anything we can do when she get this kind of seizures? How dangerous is it?

Thanks in advance.

Submitted by Abdalla on

Hi Abdulla

Focal seizures do usually only last for a few seconds to a few minutes and stop without treatment. But sometimes seizures can last for longer, and if they last for over 5 minutes this is called status epilepticus. Any type of seizure can become status epilepticus.

When focal seizures last a long time it is called non-convulsive status epilepticus, and this isn’t dangerous. But someone with non-convulsive status epilepticus may still need treatment to stop their seizure. So if your sister has a focal seizure that is lasting a long time, it would be a good idea for her to speak to a medical professional for advice.

Regards

Jess
Epilepsy Action Helpline Team

 

Submitted by rich on

Hiya,

I was diagnosed with epilepsy last year, I am 38yrs old

I feel very lucky that I have had a seizure free life up until then

Now, I am losing parts of myself, my independence, identity and probably my job soon

It’s like being trapped between two worlds and not belonging to either one, I no longer recognise a world I used to love

It feels like I just shouldn’t be part of all this, I no longer feel I hold any value or serve any purpose

I am treated as though I am public property and spiralling

The seizures happen a lot, and I am desperately trying to carry on as normal, going to work and putting on that front

I am scared everyday, every time I leave my home I am scared,
I feel more at its mercy and reliant on the kindness of the people/ strangers around me if I have a seizure

I’m not sure how much front I have left,

The Keppra can be very difficult regardless of the epilepsy but I don’t recognise where the epilepsy line ends and the Keppra line begins

Work are taking formal action against me to offer me ‘support’, it’s just something else beyond my control.

Not sure how I can move forward

Utterly lost, Amanda x

Submitted by Dolly on

Hi Amanda

 

It does sounds like things are feeling very tough for you at the moment. There could be a few different reasons why you are feeling like you do:

  • Some of this could be the physical effects of the seizures. Hopefully you are still seeing a neurologist and they are continuing to explore ways to get you the best seizure control. If you think a seizure diary would help let us know and we can send you one.
  • Some of your feelings could be related to the Keppra. One of the possible side-effects of Keppra is mood swings. If the Keppra is having this side-effect and not controlling your seizures, then it may be worth discussing a possible change of medication with your neurologist. This would depend slightly on how long you have been taking the Keppra for. Ideally you would need to give it a few months to assess whether it was likely to start working for you.
  • Some of this could be the way some people respond to the diagnosis of a long term health condition. Often if this is the biggest struggle , then being in touch with other people in a similar situation can be really helpful. Have a look at the support we offer. And you may particularly want to check out our coffee and chat groups. And possibly our online community forum4e.

 

Here is all our information about wellbeing. Hopefully there are some suggestions in there that maybe useful.

And here is all our information about work and epilepsy. It is possible that together you may be able to identify something that could help you find the work situation more manageable.

 

Probably the most important thing is that you keep in touch with your family doctor about the way you’re feeling.

 

I really hope there is something in here that helps you move forward.

 

Regards

 

Cherry  

Epilepsy Action Helpline Team

 

Submitted by rich on

Hello
We have a question around whether to medicate our 2 year old daughter or not. She has been diagnosed with focal epilepsy after 13 seizures from age 12 months to 2yrs3 months. She has had 2 normal sleep EEGs, is developing normally, with no learning difficulties that we know of. She tends to have the seizures during illness, or periods of developmental growth, but it has now been 5 months since she had a seizure.

The doctor diagnosed her before christmas after meeting with a specialist and reviewing her case, and videos of her seizures, and has prescribed her Carbamazepine twice a day. She has also requested and MRI and another sleep EEG.

We aren't sure what to do now. I think the diagnosis is correct but jumping straight to medicating her seems hasty. After reading up on the medication, to put such a small child on such a strong medication, with so many side effects, when she hasn't had a seizure in 5 months doesn't seem right. I don't know if there's another reason we should be doing it? Does each seizure leave a long lasting damage?

Any advice is really welcomed.

Submitted by Emily on

Dear Emily

Thank you for contacting us. It can be a difficult time as a parent when you have to make the decision of whether your child takes medication or not.

Epilepsy is usually treated with epilepsy medicines. They don’t cure the epilepsy, but try to stop the seizures happening. They do this by changing the levels of chemicals in the brain that control electrical activity. Most doctors would recommend epilepsy medicine after a child has had more than one seizure or if they think the child may be at risk of further seizures.

Many parents worry about the possible side effects of epilepsy medicine. However, it’s worth remembering that those listed are only possible and, in some cases, very rare side effects that will not affect everyone who takes them. Most children will have few or relatively mild side effects or no side effects at all. If your daughter has mild side effects, you could mention them to her doctor. If she had a rare severe side effect, you could contact the doctor immediately for advice on what to do. https://www.epilepsy.org.uk/info/children-young-adults/children

Some children can out grow their epilepsy, and after a few years of being seizure free can try coming off their medication.

If you choose not to start your daughter on medication, there is no research to suggest her epilepsy would become worse because of this. There are in fact parents who choose not to medicate their child, especially when their seizures are very infrequent. If seizures are infrequent, some parents may even wait until all the tests such as EEG and MRI are carried out before making a decision.

I wonder if you have been given an epilepsy nurse that you can talk to about this. Not all hospitals have epilepsy nurses so if you contact our helpline team directly with details of the hospital caring for your daughter, we will see if there is an epilepsy nurse based there.

Our freephone helpline, 0808 800 5050, is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by rich on

My daughter has just recently been diagnosed with epilepsy at the age of fifteen, after having an episode early May this year (we found her on her bedroom floor in the middle of the night breathing heavy and unconscious) but was unsure what had happened until early October when she cried out before having a full tonic clonic seizure during the night, followed by a cluster of three tonic clonic seizures in late November when Keppra was prescribed. My daughter now takes 1250mg twice a day, and this seemed ok at the onset, although she was very tired. However last week (four days before her period) she said she woke up without her nightdress and had got up during the night and taken it off, she was very tired that day, she also mentioned that there had also been a couple of occasions when she had just got up and stood at her bedroom door but unsure why? Tonight l heard heavy breathing in her room and rushed in, she had stopped the heavy breathing by the time l had got to her room but her eyes were wide open and her speech was very slurred and said she felt tired and went back to sleep. I am awaiting a neurologist appointment next month and have left messages for the epilepsy nurse to get back to me.
I get so worried about her at night l end up staying awake all night just listening for her, l almost feel like l am going crazy. I just don’t know what to do to make this better.

Submitted by Sophie on

Hi Sophie

It can be very upsetting to watch someone you care about having seizures. And even more so if it’s your child.

One possibility is that what has been happening for your daughter is focal seizures. https://www.epilepsy.org.uk/info/seizures/focal-seizures. A focal seizure is caused by epileptic activity only happening in one half of the brain. So it may be that the Keppra is working well for the tonic-clonic seizures https://www.epilepsy.org.uk/info/seizures/tonic-clonic  (where the epileptic activity affects both halves of the brain). But it might not quite be managing to control the focal seizures where the epileptic activity only happens in one half of the brain.

There is a range of possible reasons why the seizures could be happening. You might want to have a look at our information on possible seizure triggers for some ideas. https://www.epilepsy.org.uk/info/triggers

It may also be that the Keppra dose is not quite high enough for her. Or that the addition of another epilepsy medicine would be enough to control the possible focal seizures.

Or if your daughter is having a pattern of seizures at the time of her period, then the doctor may want to consider an epilepsy medicine that would help at this specific time. https://www.epilepsy.org.uk/info/women/your-periods-menstrual-cycle

Sometimes there is no obvious reason why someone has a seizure.

It’s great that your daughter has an epilepsy nurse. I’m sure they will get back to you as soon as they are able. And also good that she is likely to have a neurology appointment next month.

I know this is much easier for me to say, than for you to do, but everything would look much more manageable if you were able to get some sleep. Nothing feels possible when you’re dealing with sleep deprivation. And the more you feel able to function the more helpful that will be for your daughter.

Here is our information for young people: https://www.epilepsy.org.uk/info/children-young-adults/young-people.Your daughter may be particularly interested in the online community for 13 to 19 year olds with epilepsy. It’s called the Tea room: http://www.thetea-room.com/ - an alternative is Reddit. http://www.reddit.com/r/epilepsy

I do hope there is some information here which helps you both to move forward.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

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