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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 different types of focal seizure?

There are many different types of focal seizure, but they can be split into two main types according to what level of awareness you have during the seizure.

Focal aware seizures

During a focal aware seizure, you stay fully aware of what’s happening around you, even if you can’t move or respond. This type of seizure used to be called a simple partial seizure.

What are auras?

Some people with epilepsy use the word ‘aura’ to describe the feeling they get that warns them they’re about to have a tonic-clonic seizure. The aura is in fact the seizure starting in one side of the brain as a focal aware seizure. The seizure then spreads to affect both sides of the brain. See focal to bilateral tonic-clonic seizures.

Focal aware seizures can also happen on their own, without developing into another seizure type. Some people who have focal aware seizures on their own also call them auras.

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.

Motor or non-motor

Doctors may also use the words motor or non-motor to describe focal seizures. Focal motor describes focal seizures where the main symptoms involve muscle activity, such as jerking, loss of muscle tone or repeated movements. Focal non-motor describes seizures where the main symptoms don’t involve muscle activity. They can include things like changes in emotions, thinking and sensations.

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What happens during a focal seizure?

What happens during a focal seizure depends on which area (lobe) of the brain is affected, and whether the seizure spreads to affect other areas. Some people just experience one symptom during a focal seizure, while others experience several.

Frontal lobes

The symptoms of frontal lobe seizures can sometimes be mistaken for mental health problems or sleep disorders. Some people who have frontal lobe seizures only have them in their sleep. They are usually brief, but often happen in clusters, with several happening in a short space of time. Your awareness may or may not be affected.

Symptoms of seizures in the frontal lobes can include:

  • Pelvic thrusting, kicking, pedalling, thrashing or rocking movements
  • Screaming, swearing or laughing
  • Unintentionally passing urine (urinary incontinence)
  • Your head or eyes turning to one side
  • Having unusual body movements, such as stretching one arm while the other bends
  • Twitching, jerking or stiffening of muscles in one area of your body. The movements may sometimes spread bit by bit to other areas

Occipital lobes

Seizures starting in the occipital lobe often spread to involve other lobes.

Symptoms of seizures starting in the occipital lobe include:

  • Seeing flashing lights, colours or simple patterns
  • Seeing more complex images, such as pictures of people, animals or scenes
  • Not being able to see as well as usual, or not being able to see at all
  • Having eye movements you can’t control, such as your eyes closing, moving to one side or rapidly moving from side-to-side
  • Eyelid fluttering

Parietal lobes

Seizures starting in the parietal lobe often spread to involve other lobes.

Symptoms of seizures starting in the parietal lobes can include:

  • Having feelings of numbness or tingling
  • Prickling, crawling or electric-shock sensations, which may spread along the affected body part
  • Sensations of burning, cold or pain
  • Feeling like part or all of your body is moving or floating
  • Feeling like a body part has shrunk, enlarged or is missing
  • Sexual sensations
  • Difficulty understanding language, reading, writing or doing simple maths
  • Seeing things as larger or smaller than they really are, or seeing things that aren’t there

Temporal lobes

If you have been diagnosed with temporal lobe epilepsy (TLE) it means you have seizures starting in one or other of the temporal lobes. Seizures starting in the temporal lobes are usually focal impaired awareness seizures, but focal aware seizures can also happen. You might start the seizure being aware of what’s happening, and then lose awareness as the seizure progresses.

Symptoms of seizures in the temporal lobes include:

  • Feeling frightened
  • Feeling like what’s happening has happened before (deja vu)
  • Hearing things that aren’t there
  • Experiencing an unpleasant taste or smell
  • Having a rising sensation in your stomach
  • Lip smacking, repeated swallowing or chewing
  • Changes to your skin tone or heart rate
  • Automatic behaviours such as fidgeting, undressing, running or walking

After a temporal lobe seizure you are likely to be confused, and may find it hard to speak for a short time.

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: 
B037.06

Epilepsy Action would like to thank Dr John Paul Leach, consultant neurologist at the Queen Elizabeth University Hospital, Glasgow, for this contribution to this information.

Dr Leach has declared no conflict of interest.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated November 2019
    To be reviewed July 2022

Comments: read the 49 comments or add yours

Comments

Hi I’m Charlotte and I am 11 years old I have been diagnosed with benign rolandic epilepsy but I have been getting what can only be described as a seizure in my right arm that is uncontrollable and spreads to the side of my face.
And my arm doesn’t feel like it is mine. I also sometimes get this after have a seizure but I also get it even when I haven’t had a seizure. I am normally completely aware of what it is going on
But my arm feels like it’s not mine or like it’s missing.
I normally gat this about 5-10 minutes after waking up and have to get on the floor and lie on my arm in order to stop my arm from harming me.
I’m not sure whether what I have described is focal epilepsy which is why I would like your opinion.

Submitted by Charlotte Betts

Dear Charlotte

Thank you for your post.

This sounds like a painful and scarey experience.

The seizures that happen when you have Benign Rolandic epilepsy are usually focal seizures. They start in the rolandic part of the brain

It’s possible for your symptoms to involve your face and maybe spread to the arm or the leg.

I hope you have spoken to someone about this. It may be your epilepsy specialist can alter your epilepsy medicine to help with this new symptom.

If we can be of any more help, please feel free to contact us again. You can contact us directly, either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline 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

Hello there. I recently had a seizure after seeing Incredibles 2. There were gaps in my speech and I felt very nauseous and dizzy. I was fully aware what was happening. After my seizure I still felt extremely dizzy. I was thinking is this a focal seizure or maybe just an absence seizure? I have not been diagnosed, but I was thinking should I get checked out or is this nothing major?
Thank you for your time

Submitted by Sydney

Hi Sydney

What you’ve described sounds more like a focal seizure than an absence seizure. This is because you can remain aware during a focal seizure. During an absence seizure you would be unconscious for a few seconds.

However, it’s not possible for us to say if what you experienced was a seizure or not. Some people can feel unwell when they see flashing or flickering lights, but this doesn’t always mean they have had a seizure or have epilepsy. If you’re concerned, it would be worth seeing your GP (family doctor) about what happened. If they think it might have been a seizure they should arrange for you to see a neurologist to investigate further.

Best wishes

Grace

Epilepsy Action Helpline Team

 

 
Submitted by rich

Hi
My daughter is 10 and has recently started zoning out with a blank look on her face and repeating herself over and over again for approximately 30 seconds-1minute saying things such as 'when am I getting out' 'how do you use this?' etc I did originally think she was just joking on, but now it has happened well into double figures and she genuinely doesn't know what has happened. She ended up riding up someone's drive the other day on her bike and zoning out there repeating 'how do you use this'. We do have a dr appointment for this week but I can't seem to find any information on seizures involving talking. Any help would be gratefully received.

Submitted by Kirsty

Hi Kirsty

 

Difficulties processing language including confused speech can be a non-motor symptom of a focal seizure.

 

It can be helpful to make a record of what you and others are observing. This can be really useful for getting an accurate picture and diagnosis. In case it is helpful this is a link to our seizure diary information and a downloadable diary.

https://www.epilepsy.org.uk/info/diagnosis/seizure-diary

 

I hope you are able to find some answers about what is happening for your daughter soon.

 

Regards

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

I would like a bit of advice. I have been having “episodes” for nearly a year now. After researching online it seems I have focal seizures as there are many people with the exact same symptoms I experience. From reading this website it seems nothing can be done for them so is there any point in me seeing a neurologist? My GP did write me a letter for referral however I chose not to bother as I didn’t want to waste anyone’s time. Can these focal seizures lead to anything serious or can I just continue to ignore and hope they will eventually stop?

Submitted by Tayyiba

Hi Tayyiba

Deciding what is right for you can be a tough decision. Some people with occasional focal aware seizures may not even realise that it could be epilepsy and will not have a diagnosis. For other people a diagnosis gives them an opportunity to rule out other causes and discuss what treatment, if any, is right for them. You might like to look at our information about diagnosing epilepsy here: https://www.epilepsy.org.uk/info/diagnosis/diagnosing-epilepsy

The treatment for epilepsy is usually epilepsy medicines. With the right dose of the right epilepsy medicine up to 7 in 10 people with epilepsy can be seizure free. But some people choose not to take medicines depending on the type and frequency of their seizures. It is something that people can usually discuss with their consultant or epilepsy nurse. We have more information about epilepsy medicines here: https://www.epilepsy.org.uk/info/treatment

We have no way of predicting how epilepsy develops. We know that some people experience very few focal episodes. For other people epilepsy can develop and they may start to experience changes to consciousness and other types of seizures as well. The difficulty with uncontrolled seizures is that they can cause longer term damage to things like memory.

I hope this gives you some information to help you to make a decision about what to do next. You would be welcome to contact us on the Helpline if you think we can help any further: https://www.epilepsy.org.uk/info/support/helpline

Regards

Mags
Advice and Information Team

Submitted by Mags - Epilepsy...

I’ve had several tonic-clonic seizures that have landed me in the hospital, but since taking Keppra, I’ve been lucky enough not to have more. Today was the first time I’ve read about focal seizures. It almost perfectly describes something I’ve dealt with for years, but never been able to describe to a doctor. I can feel it coming (unlike tonic clonic ones) and the only way to describe it is like an unwelcome, unpleasant orgasm. It usually occurs when I’m falling asleep, but can happen any time. It feels like if I don’t move, I’ll die, and YES to the deja vu description as well. Keppra doesn’t seem to have any effect with these. It’s scary, but I haven’t died yet. MRI’s and EEG’s have come back clear. Been waiting for a neurologist appointment for 6 months now. I hope some others can relate to this. I feel less alone after reading this Q & A.

Submitted by Sean

Within the past two weeks I have begun having episodes where I get dizzy (I experience it more like vertigo rather than the feeling of being lightheaded) and my mind goes blank. During this time I have an almost out of body sensory experience, it’s as if I’m vaguely aware of what’s going on around me but not really - kinda like that period of time just before your nod off to sleep where you can hear people moving about but you don’t respond. I’ve been told it lasts about 1-2 minutes and that I don’t recall what I was doing or the conversation immediately before the episode (although I remember everything earlier. After these episodes I get extremely tired - generally I can do whatever to get me home, but I want to take a nap as soon as possible. I have a history of migraines as well as hemiplegic migraine - both respond only to Topomax for preventative management but I can’t handle being on it for longer than six months at a time. ☹️ My father had gran mal seizures. I’ve visited my General Practioner and he agrees I need to see my Neurologist. He is out of the country currently so I’m awaiting his return. I know you can’t diagnose me, but it would be very comforting to know if you have heard of other patients with symptoms like mine? It seems focal seizures are the only thing I can find that “fit” my symptoms, and given my health and family history it seems there could be evidence for it.

I guess I just would like to think I have an idea about what is going on with me right now as I await my doctor’s arrival back into the country. It’s hard to keep experiencing what I am going through not knowing what it is and not really being sure about what precautions I should be taking. I don’t want to go to extreme s and shut down my life, but I don’t want to endanger myself or others either. 😔

Submitted by Teresa

Hi Theresa,

There are lots of different symptoms of focal seizures. Some people have told us that they have similar experiences to what you’ve described during a focal seizure. But as you say, we can’t make a diagnosis and there may be other things that could lead to these symptoms.

Not knowing can be very difficult and I hope you get some answers from your neurologist soon. You may find our safety information useful in helping you decide what precautions to take in the meantime (https://www.epilepsy.org.uk/info/daily-life/safety).

Best wishes

Jess

Epilepsy Action Helpline Team

Submitted by rich

Hi Teresa

There are lots of different symptoms of focal seizures. Some people have told us that they have similar experiences to what you’ve described during a focal seizure. But as you say, we can’t make a diagnosis and there may be other things that could lead to these symptoms.

Not knowing can be very difficult and I hope you get some answers from your neurologist soon. You may find our safety information useful in helping you decide what precautions to take in the meantime (https://www.epilepsy.org.uk/info/daily-life/safety).

Best wishes

Jess

Epilepsy Action Helpline Team 

Submitted by Jess - Epilepsy...

Hi, my name is Myah. I am the youngest sister my family but; my older sister has epilepsy. and it's whenever she looks directly at bright lights. like not even the flashy ones like photosensitive seizures. She has seizures with flashy lights to but that was 5 years ago. she even had one last night right at a stoplight. pls, help thank you.

Submitted by Myah Phillips

I’ve been having episodes started about two years ago for no reason my head would feel wuzzy then my right arm and hand would go numb pins & needles for about two minutes I know what’s going on around me ,I’ve had a bit of depression and I’ve started with these episodes again having as many as 7 in a day after having them I can become very tired ,just come on for no reason then I had about a three week break from them and they started again one when I was having bloods taken at doctors ,my right side of face can feel numb I’m waiting for an appointment to see a neurologist. Can anyone suggest what it could be .

Submitted by Heather

Hi Heather. That sounds very unsettling for you. I don’t know what your episodes are but it does seem like there are a few things going on for you that could be related. It would be worth talking this through with your GP to see what their suggestions might be. I hope you get some answers soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry - Epilep...

After Googling recently and reading this post,it seems what i've had mostly from 1989 til wained recently are this. And as i had a depressed skull fracture in parietal region as a 2 yr old(unconscious 30 mins),a minor frontal one between 5-8(5 mins),various bangs in frontal due to clumsiness or hyperactivity. Worst one's are colour changes in streetlights-white to purple(with halo's before),and orange to red,and a wave of numbness/burning tingling below waist and feel fear VERY strong(fight or flight!). About a few seconds,but can have clusters for a fortnight. But due to stupid MH saying in 1990 that i had MH symptoms,every other dr has said same. Seems seeing a specialist cannot be even considered cos NHS obsession of giving MH drugs,or CCG's not wanting any cost. Now mostly roads widen when i cross-daily!
Had Dissociation diagnosis amongst many-all not relevant.
Has been a very lonely 30 yrs of wasting time with NHS drs! anyone's thoughts? Jason.

Submitted by Jason Tucker

I had a Focal Onset Seizure about 10 months ago then When I was at school I had a Tonic-Clonic Seizure which meant I was given medication then I think around 6 months after I had another Tonic Clonic Seizure and since then my hand has been randomly vibrating or something like that and sometimes I see these lights and it flashes like thunder but nobody else sees it I also sometimes feel like I am getting bigger or moving around do you know what this might be or something that might fix it.

Submitted by Aaron

Hi Aaron. We’re not medically  trained so I’m not going to be able to offer you a diagnosis. But it does sound unsettling. So it would definitely be a good idea to mention this to your GP. If they think it could be epilepsy related they will probably suggest you contact your neurologist or epilepsy nurse.

I hope things settle for you soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry - Epilep...

I don’t know what kind of epilepsy I have, I am sure I was diagnosed with some kind of epilepsy in my early youth. The seizures happen seemingly randomly and at random intervals. Sometimes I don’t get them for months or even years and other times I get them twice or even three times a day. They start with a strange sensation in my head, then intense deja vu. I feel a rush of heat and usually nearly start sweating. I always get thirsty during them, and want to sit down. The world feels almost overwhelming during them, like I can’t focus on anything else. Afterwards I almost always get a headache. The first thing I notice is usually the deja vu, which occurs around the same time as the head rush.

Submitted by Keenan

Hi Keenan

You don’t mention if you’re on epilepsy medicine. If you are, you might want to talk to your neurologist or epilepsy nurse about whether you’re on the right dose. Or whether they can suggest anything for the days when you have more than one seizure.

If you aren’t already taking epilepsy medicine, you could see your family doctor and ask for a referral to a neurologist. You might also find it helpful to look at our information on possible seizure triggers.

I hope that helps a bit.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry - Epilep...

Hi

My son is 16 yrs old and he has had epilepsy since birth. He also has quadriplegic Cerebral Palsy and is significantly delayed in all areas of development. He is sadly not able to communicate in any way.

My son had tonic clonic seizures as a baby, then was seizure free (with medication) for a few years before then having clusters of focal seizures from about age 12/13yrs.
He has been seizure free (with medication) for almost 2 yrs now.

For a few years, my son has been having frequent episodes of angry outbursts where he bites his hand, thrashs his body around and shouts angrily. He gets very hot, out of breath and his heart rate increases during these episodes. There doesn't seem to be any obvious reason for his anger and the outbursts last for about 5 - 30 mins before he is absolutely fine again.

These episodes have become more frequent in the past few months and his sleep is very disrupted. Although these episodes can happen at any time of day or night, it seems to be the pattern that he has one of these episodes almost every night while he is drifting off to sleep.

I have been asking for advice for a while on this and yesterday we saw his paediatrician who, after seeing a video of an episode, said she thinks it could be a frontal seizure.

I'm not entirely convinced that's what it is but as he cannot communicate it is very difficult to know why this is happening and its very distressing for both him and myself when this happens.

I was just wondering if anyone has experience of a seizure such as this? Or any ideas as to what may be happening for him.

Many thanks
Tammy

Submitted by Tammy

Hi my daughter is 3years old, from last 6 months when she was in sleeping suddenly laughing, is it gelastic sezuires ?
She also shows some autism symptoms

Submitted by Kalyani

Dear Kalyani

Thank you for your question.

We’re trained epilepsy advisers but we’re not medically qualified. This means we can’t suggest a diagnosis for your daughter’s symptoms. There are a number of medical conditions that can cause symptoms similar to epilepsy. If you haven’t already, it would be advisable to talk to her doctor. It would also be helpful to video a few of these laughing episodes to show the doctor.

We do however, have information on how epilepsy is diagnosed. I hope this information is helpful, and helps you put any questions you have to the doctor.  http://www.epilepsy.org.uk/info

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

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane - Epileps...

Hi,

I was diagnosed with epilepsy about 3 years ago and my seizures are really weird. I mostly have really bad migraines and my left arm and head sort of tremble and also have trouble speaking. It's like my body doesn't listen to me. And I've looke around to try and figure out what's wrong with me. Any answers or advice?

Submitted by Kadidia Coulibaly

Dear Kadidia 

Thank you for your question regarding your seizures.  It’s important to get a correct diagnosis for your seizure type from your epilepsy specialist.  As you are still having seizures, I’d like to check you’re still seeing one? They can review your treatment and look at other possible reasons for why your seizures are still happening. They may suggest trying a different epilepsy medicine.  If you have tried various types of epilepsy medicines, it may be the specialist could look into other treatment options 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.

Living with headaches must be so distressing for you. For your information, here are some articles relating to headaches/migraine and epilepsy that I hope you will find helpful and informative.

http://www.epilepsyresearch.org.uk/the-link-between-epilepsy-and-migraine/

https://www.epilepsy.org.uk/news/news/epilepsy-and-migraine-shared-genetic-cause

http://www.ncbi.nlm.nih.gov/pubmed/22217520

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 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 Diane - Epileps...

I am typing as a concerned parent. My son is presenting with spells where he zones out and it takes him a while to get back, we have to say his name a few times before he responds. Today he started saying he couldn't see. He couldn't follow my finger and he was seeing double from what he could see. I have partial absence seizures. I don't know if this is heredity or if this is whats going on I can't find any information on line. please help.

Submitted by Chris

Hi Chris

That does sound worrying. It would definitely be a good idea to take him to a doctor. Epilepsy is only inherited in a few situations. But it won’t be possible to answer that until a doctor has decided what is happening for your son. I hope they can do that soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry - Epilep...

I have been having "episodes" of sudden on set of Dizziness, flushing, nausea, vomiting. A few months back I had this episode but it was severe- ended up having a seizure. Saw neurologist-MRI and EEG are negative. Also had a heart monitor that was negative. The neurologist (PA) thinks I might be having focal seizures, she referred me to an Epilepsy specialist. Is this necessary, I've had quite the expense of medical bills recently. Does this sound like focal seizures to you?

Submitted by StephanieJ

Hi Stephanie

Thank you for your message. Focal seizures can have a great variety of different symptoms because these depend on which area of the brain is affected.

The symptoms you’re having could be due to focal seizures. But some other medical conditions can cause symptoms similar to epilepsy. This can make it difficult to diagnose. And although EEG and MRI tests can sometimes give useful information, unfortunately they cannot prove whether someone does or doesn’t have epilepsy. Because of this, a diagnosis is often based mainly on someone’s symptoms and is usually made by an epilepsy specialist.

Our information about epilepsy diagnosis is relevant to people in the UK, and it may not be relevant in other countries. It might be a good idea to get in contact with Epilepsy Foundation, who may be able to offer advice about diagnosis and treatment in the United States.  

Regards

Jess

Epilepsy Action Helpline Team

Submitted by Jess - Epilepsy...

I had a tonic clonic seizure on Monday night, I went to bed with a migraine and an hour later my son found me in the kitchen saying I needed help (I don't remember this). He said I was 'out of it' and not making sense for at least an hour, I vomited and had wet myself and had chewed up the inside of my mouth and tongue, plus my hips, shoulders and stomach muscles ached alot the next day.

That was nearly 6 days ago, and I'm still feeling very strange. I keep having dizzy episodes and feel slightly nauseous and very tired. I was off work for three days and slept a lot of the time. I have gone back to work, and have been able to do normal things for the past two days, generally feeling OK if not completely back to normal. But keep having these strange episodes where I feel detatched from reality, slightly fearful and light headed, I have the sensation of spinning as if I've just got off a kids roundabout.

Could this be the after effects of a bad tonic clonic, or am I having a different kind of seizure?

Submitted by louisa

Hi Louisa,

 

Thanks for commenting.

 

Some people can feel very tired and unwell for a few days after a tonic-clonic seizure. It can be hard to tell this apart from repeated focal seizures. If you hit your head during the tonic-clonic seizure it’s possible to get concussion which can have similar symptoms.

 

We’re not medically trained and we can’t say what is causing your symptoms but it is important to get them checked by a doctor. If this was your first tonic-clonic seizure then this is especially important – see our information about what to do if you’ve had a first seizure. But even if not, you should seek medical advice about this.

 

Regards, Ashley  

Epilepsy Action Helpline Team

Submitted by Ashley - Epilep...

Hi. My Brother suffers from TLE and has been on medication for several years now. He has seizures now and again however they only last a few minutes. just over a week ago he had what we think was a seizure for well over 30mins where he couldn’t make sense of anything we were saying and he couldn’t speak as his words where mixed up. He was stumbling about couldn’t understand why we were there etc. He did attend A&E however pulled himself around. Since then we have had to ring an ambulance on another 2 occasions where he is vomiting can’t see properly and is very confused and stumbling about. He had a brain scan and lots of blood tests and nothing unusual. Hospital said he was medically fit to leave however this is still ongoing. Do you think this relates to his epilepsy? Is it usual for this to effect you over a week later?

Submitted by Karen

Hi Karen

Thank you for your message.

It’s not common for someone to be affected in this way after a focal seizure, even a prolonged focal seizure. We have some more information on prolonged seizures on our website.

I am wondering if these episodes of vomiting and confusion could be symptoms of further focal seizures. But there are lots of other things that could also cause these symptoms. And we aren’t medically trained so we’re not able to make a diagnosis.

It would be a good idea for your brother to speak to his epilepsy specialist, epilepsy nurse (if he has one) or his GP about this for advice.

Regards

Jess

Epilepsy Action Helpline Team

Submitted by Jess - Epilepsy...

I was diagnosed with grand mal epilepsy aged 8. I am now 44 & at aged 21 I was diagnosed with an arachnoid cyst on my front left temperal lobe...to cut a long story short, my epilepsy was blamed on the cyst - leading to 2 neuro ops & a v.p shunt...after a year, I had the shunt clipped, due to more headaches...15 years later, I had the entire shunt removed. I have since been diagnosed with numerous health problems, my latest being told I have autonomic dysfunction, ptsd, B12 defiency....to name a few. Now, I'm in complete distress....I recently had a 72 hr eeg & the results have shocked me, in my report I'm now being told consultants do not believe I'm epileptic, but I'm being told I'm having seizures in my sleep?? & It's dangerous for me, I need to have another eeg done? (I had a visit from a social worker whom I'm no longer under there services, come to my home unexpectedly to tell me this?) ....it has not came from my g.p.
I'm so scared to sleep, my body stiffens for hours ...I can't move, speak, yet my soul wants to run out of my body but I can't, I feel "stuck" in my head. I am not seeing a neurologist until December coming....they have no interest tbh, I'm waiting to see a rheumatologist ...with no appointment as yet, but in the last year my health has deteriorated. I have no one to talk to, no answers ...nothing. I still having all sorts of seizures, from absent to tonic clonic, auras, standing up, going stuff then having a fit....2 in a row. I have list faith in Neurologists. They've made me feel like I'm lying yet I have a report about my sleep is not normal, but left to my own devices. I'm scared I won't wake up from my sleep. Any advice?. T.i.a.

Submitted by Polly

Hi Polly.

It sounds like you’re having to deal with a really tough situation. I’ve never heard of someone being offered a diagnosis by a social worker before. That must have felt very strange.

It is possible the doctors have decided that you may have what we call dissociative seizures. As you can see there are many different names for these. And it is not surprising that you feel very unsettled by this. To be told this after thinking you have epilepsy for so many years, is a huge thing to come to terms with. The seizures are still very real. The difference is that they have a psychological cause rather than happening as the result of epileptic activity. So they wouldn’t be controlled by epilepsy medicine. Because of this the neurologist may well want you to start reducing your epilepsy medicine. Also, unlike epileptic seizures, non-epileptic ones are not dangerous unless you injure yourself.  The treatment for these seizures is talking therapy. If it hasn’t already happened, ask your neurologist or GP to refer you for this.

I hope things start to improve for you soon.

 

Regards

 

Cherry  

Epilepsy Action Helpline Team

 

Submitted by Cherry - Epilep...

I'm a medical student and recently we began looking at epilepsy. Some research has made me wonder about experiences that I have had ever since I was little. It's usually when I'm quite relaxed and I suddenly start feeling like I'm swaying, and it picks up, becoming more rapid like I'm being shaken. It will then slow down, and then start again in a different direction. There is also a very specific sequence of images I'll see, and I do feel a bit out of it when it happens. Sometimes I also get a horrible smell in my nose. It's not serious and generally I can continue with what I'm doing, but I do notice that I just kind of sit wherever I am and let it happen rather than trying to get out of it. I've tried to google it in the past and nothing ever comes up, and when I've mentioned it to other people, they don't understand what I'm going on about. I don't want to be paranoid about something that doesn't really cause a problem, but I was just wondering if you may have heard of anything like this being a type of focal seizure as it only lasts for a short period of time as far as I'm aware.

Submitted by Jodi

Dear Jodi

Thank you for your comment.

As trained epilepsy advisers, we can give general information on epilepsy. But we’re not able to diagnose your symptoms. If your symptoms are related to epilepsy, it could be some type of focal seizure. In these seizures, the epileptic activity starts in just a part of your brain. You may remain alert during this type of seizure, or you may not be aware of what is happening around you. You may have movements that you can’t control, or unusual sensations or feelings. Focal seizures can be very brief or last for minutes.

A number of medical conditions can cause symptoms similar to epilepsy. If you haven’t already, it would be best to talk to your doctor regarding your symptoms. If your doctor thinks it could be epilepsy, they should refer you to an epilepsy specialist for a diagnosis.  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.

Diane

Epilepsy Action Helpline Team

Submitted by Diane - Epileps...

For about a year now, I have had strange episodes of 'deja vu' and 'jamais vu' which made me feel anxious, and have gradually got worse over time to where I get a similar feeling to being on a rollercoaster and like I'm going to throw up. At its worst, I have been known to have up to 5 of these 'episodes' a day. Until a few days ago, I had never heard of Temporal Lobe Epilepsy but upon reading about it I'm almost certain that it is the cause of my symptoms. I want to see a doctor about it but I just worry about getting them to take my concerns seriously and not just brush me off to our local mental health support team (when I first started getting them, I told the doctor I was having these weird flashes like deja vu and that's what happened).

Submitted by Kayleigh

Hello,
I have so many questions! But I will keep it brief, I was recently diagnosed in January 2020 and with everything else going on in the world it's difficult to see my Neuro as frequently and get testing as you would normally. The MRI was normal though (no tumors/lesions) and I'm on Topamax 25mg 2-2xaday=100mg. (The side effects are horrid, but I do feel a lot better.) She believes I have had epilepsy since childhood. Complex Focal Aware.
I am not even sure what the actual seizure is or what the left over feeling is... If that makes any sense. It also seems like some seizures are a bit different then the others so is that possible, that they won't always present the same way?
The other thing is the symptoms...my main ones are: I suddenly feel limp throughout my entire body, lethargy, then an extraordinary need to lie down takes over, not as if I'm sleepy but, some other more bizarre like a lack of physical strength to hold my muscles in position to even sit in a chair, my head and eyes become so heavy I cannot keep them up or open, pins and needles or a mushy vibration type feeling in my head/brain, severe vertigo laying flat so I absolutely have to lay on my side, anxious, inappropriately overly emotional (so I just usually say nothing so I won't act ridiculous!) feeling of being sucked into a tunnel, sudden stopping of brain...(I mean its like I can be talking normally in a deep conversation and suddenly all the words all the thoughts everything simply go blank! Just cease) and I'll stare off and sort of tap my hand maybe in a attempt to recall the thoughts sort of gesture but I can't stop doing it, then after that I feel mixed up confused, tired, nervous, upset, just bothered, physically I feel numb literally though not figurative. I feel hallowed out as if I can only feel my skin not my muscles or anything like if I could poke all the way to my bone, I would only feel the prick of my skin. That's so weird right!?!? To only feel your skin? Or to be acutely aware of your skin? Gosh it's bizarre! Oh and sometimes not always it's only when it's a really long or bad episode (seizure) It feels like my blood is acidic. Now obviously I have no idea what that actually feels like so how can I possibly know that... But that's the only way I could describe it. Is it just feels like someone has exposed all my nerves and acid blood is running through my body or fire blood and of course I'm super tired! Goodness gracious it's like running a marathon through a volcano for a few days! Then after a few days and a good nights sleep it's like nothing even happened. Which is a blessing! I just never know when I'll have an episode. So is the first part the seizure most likely then the second part that lasts is the recovery?
Is there a way to shorten how long you feel bad after a seizure? Does anyone else feel any of these things?

Oh and before I have a seizure I notice that I'll become fixated on something like I'll hear a word or a phrase and it'll go on repeat in my mind to the point of madness! Which I think is how I found this thread. So thought I should throw that in to just let you know why I'm here anyway... I get that too!

I suppose this was a long post after all. I'm so sorry. I'm just alone. I really don't have anyone around who knows anything about epilepsy and like I said given the nature of things today I cannot talk to my Dr or find a support group like you would normally be able to go to (Social Distancing). So I appreciate just getting to write this. It made me feel better reading all your experiences. It meant a lot to not feel alone. Thank you so much.

Submitted by Dorothy

Hi I had an experience last year and I want to ask if this sounds like a seizure? I was sitting when suddenly I felt like I collapsed, if I was standing I think I would've been on the floor. I was leaning really hard into the chair and couldn't move at all. My heart was racing and I couldn't breathe, my mind felt totally blank (although it's a bit of a blur I remember it quite vividly.) I was quite frightened and felt like I was going to die for a moment. Suddenly I felt like my heart stopped(I'm pretty sure it didn't, it just felt like it) and my vision started blurring/blacking out. After that I can't recall, I'm not sure whether I totally blacked out or immediately snapped out of it as I was home alone with no witnesses. This happened a year ago and was a one off experience, or at least hasn't happened since then. I know it's not epilepsy(or at least isn't enough to diagnose if it is), but I would like to know if this sounds like some sort of seizure. I still have no idea what it was, it came as suddenly as it went and I just want some answers. I did not go to see a doctor which I kind of regret now, although it hasn't been a problem since

Submitted by Storm

Hi Storm – this sounds like a scary experience for you. It’s possible this could have been a kind of focal seizure but it is hard to know for sure. Like you say epilepsy is rarely diagnosed from one seizure  and this might be a one off episode. but if it happens again you could talk to your doctor to get things checked out. I’m linking you to our webpage about diagnosing epilepsy for more information.

 

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

Hi Storm – this sounds like a scary experience for you. It’s possible this could have been a kind of focal seizure but it is hard to know for sure. Like you say epilepsy is rarely diagnosed from one seizure  and this might be a one off episode. but if it happens again you could talk to your doctor to get things checked out. I’m linking you to our webpage about diagnosing epilepsy for more information.

 

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

I have wondered for years, since I was in my 20’s ( Now in my 80’s) what these strange occurrences could be. Didn’t rule out but didn’t want to think epilepsy as symptoms were not like any I have seen. After searching I now have a name for my brainfarcts which stumped me all these years but I was too embarrassed to talk about. I take comfort in knowing that I’m not the only one who suffers from focal seizures and that they are not life threatening. Also that they are not everyday, happening sometimes years apart or other times months apart and I can still carry on with my everyday life even though they come unannounced and cause me more of an embarrassment than than a threat to my life.
I first thought they might be migraine related but after years of debilitating migraines a GP started me on a beta blocker which has been a life saver. Only in the past two years I have had a few optical migraines which led me down the path of thinking this was related to my present situation. I have the onset of the Aura that comes Moments before the Actual onset of the FS. I am aware that I am verbally not in the moment although I continue with what I thought I was talking about but the scenario of the conversation changes but I keep trying to talk and make it sound sensible but it’s totally off track. When it passes I feel rather stupid because whomever I am talking with is looking strangely at me wondering how I got off track so terribly. I feel totally drained after for about 15mins even though the FS only lasts a minute or so. Not sure on that but I can never recall what I have said although at the time of saying it I know it’s off yet it sounds like I’m making conversation. I’ve never felt the need to take it further medically. It is an intrusion although as I said not a frequent occurrence.
I am pleased that I found this site and finally can put it all together. Thank you for all the helpful explanations and advice. Whatever time I have left on this wonderful earth is made better today just by having this knowledge and understanding of this condition. I wish I had searched sooner but like everyone else I was hesitant at what a diagnosis might reveal. Now I can stop searching.

Submitted by Elizabeth Thomson

Hi, I have been suffering from anxiety for the last 3-4 years. I have recently been put back on medication after a break of 16 months. For the last year or so I have been experiencing these episodes, a friend said they might be dissociation. I suddenly feel a sensation of dejavu and frightened. I get a rushing in my ears and my mouth fills with saliva, i feel nauseous and my heart beats faster. I cant pay any attention to what's going on around me and can't talk. It lasts for a minute or two but often takes a while to feel normal again and I'm left with a headache. They seem to come in 3s over 24-48 hrs once a month or so. My memory has also been awful since they've started. Last time it happened I felt like I was going to pass out. It sounds very similar to TLE when I'm reading it. I am concerned about getting back in touch with my GP and saying I am concerned this is what's going on. How can I approach it? I think she believes it's just a symptom of anxiety.

Submitted by Jenni

Hi Jenny  - it could be worth keeping a diary of everything you’re noticing so that you can talk things through more fully with your GP. It’s important to include information about what happens before, during and after these episodes to get a full picture. You mentioned that these episodes seem to have a pattern to them. This can happen for some women so it might be worth reading our information about catamenial epilepsy as well.

 

The only way to know for sure if these symptoms could be related to epilepsy, non epilepsy seizures, anxiety or anything else is to get them checked out. You’d need to ask your GP to refer you to a neurologist who specialises in epilepsy to get an accurate diagnosis.

 

If you’d like to talk through what steps you might take you’d be welcome to talk things through with us at the Helpline. Its free and confidential to phone on 0808 800 5050.

 

Regards

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

Hi I was diagnosed with epilepsy via telephone consult after having a tonic clonic seizure in july 2020. I'd been having lots of deja vu episodes etc before this since Nov 2019.....which the neurologist said were partial seizures. I've heard peaple talk about care plans and epilepsy nurses....are these provided or do you have to ask for them? I'm not due for another phone consult with my neurologist until end of dec and am now having episodes of odd tingling sensations and I keep getting an overwhelming smell of cannabis in my house (but no one is smoking it in or around me or has it in the house) Are these seizure type things? Should I speak to my GP or try and contact the nuerologist? I'm on lamotrigine and having sleep jerks a lot too. I feel a bit on my own after my diagnosis and don't really know what I should do? Although this site has been really helpful.
Many thanks

Submitted by lisa jacobs

Hi Lisa – This must be a tough time for you. We know that a lot of appointments are happening over the phone at the moment and we are monitoring this. The important thing to know is that you’re not on your own and there is support and advice out there for you.

 

It can take a while to get the balance of the right medicine and the right dose for your epilepsy. And sometimes it can take a little while for seizures to settle, especially if you have been increasing your epilepsy medicine to a maintenance dose. But the aim of epilepsy medicines is to try to get as good seizure control as possible.

 

Your GP wouldn’t be able to change your treatment so it would be best to try to try to speak to your neurologist about what’s happening. It can help to keep a diary so you have a record of everything you’re noticing. To get in touch with your consultant you can contact the hospital and ask to speak to the neurology department or your consultant’s secretary.

 

If there’s an epilepsy nurse attached to your neurology department your consultant or their secretary should know how you can contact them. It’s worth knowing if there is a nurse you can talk to as well as the consultant. But not all hospitals have nurses.

 

Some people with complex epilepsies have a care plan but not everyone does. If you think it would be helpful for you to keep a record of your treatment we have a care plan you could download.

 

We have some information for people who are newly diagnosed you might find helpful. This explains some basic information about epilepsy and also has links to managing your epilepsy and support.

 

There’s a lot to take in and you must have a lot of questions. You’d be welcome to call and talk to one of us at the Helpline. We aren’t medically trained but we know a lot about epilepsy. Our number is Freephone 0808 800 5050 and we’re open 8.30 – 8pm Monday to Thursday, 8.30am to 4.30pm Friday and 10am – 4pm Saturday.

 

Regards

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

Hi there, my name is Claudia.
My daughter has just been diagnosed with Benign Rolandic seizures and the consultant has not started medication yet because she had two seizures 4 months apart. However she had another seizure after only 3weeks from the last one. This one was about 3minutes and I wonder whether they are changing.
Can I ask if seizures of this type are damaging her brain?
Many thanks for your answer.

Submitted by Claudia Marota

Hi Claudia

You must be concerned about your daughter and the seizures she's had recently.

Seizures can change and it can take a little time to establish the pattern of someone's seizures with childhood epilepsy with centro-temporal spikes (benign rolandic epilepsy). So it is worth keeping a record and talking to your daughter's consultant about ongoing treatment. 

Some people can have longer seizures and if your daughter's seizures are frequent her consultant may suggest medicines.

Its unlikely though that these seizures are causing damage to your daughter's brain at the moment. But it might be best to talk over your concerns with your daughter's consultant. 

There's a link here to our information about childhood epilepsy with centro-temporal spikes which may be helpful as well: https://www.epilepsy.org.uk/info/syndromes/benign-rolandic-epilepsy 

You'd be welcome to call us at the Helpline if there's anything you'd like to talk through. Our number is 0808 800 5050 and we're open We are open 8.30 – 8pm Monday to Thursday, 8.30am to 4.30pm Friday and 10am – 4pm Saturday.

Regards

Mags 

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

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