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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

Occiptal 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 81 comments or add yours

Comments

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

this is happening to my niece but nothing is diagnosed yet with epilepsy. Left arm goes redundant after her seizure.

did you find out anything more from your experience?

Submitted by Theo 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

I think i have focal aware seizures. If i get excited about something im aware of myself stopping what im doing, my eyes turn to the side and usually my hand goes ridgid. I can usually get myself out of this but can have several a day.
Ive had them for as long as i can remember, i used to shake when i did this as a child im now 48 and have never really told anyone. Do you think its seizures?

Submitted by Cat on

Hi Cat

It is possible that the episodes you described could be focal seizures.

You can be aware of your surroundings and what is happening when you have some types of focal seizures. Sometimes people find that they can just get on with what they are doing after a focal seizure. Some people find they have to rest.

For some people the episodes are always similar but some people can develop other types of seizures as well.

We have some information about how epilepsy is diagnosed here

https://www.epilepsy.org.uk/info/diagnosis

If it’s helpful to talk through these episodes and what you might want to do you would be welcome to call or email us on the helpline

https://www.epilepsy.org.uk/info/support/helpline/freephone

Regards

Mags

Epilepsy Action Helpline

Submitted by Mags-Epilepsy Action on

I just reasonably been diagnosed as a epelitic patient. I just learned that I have been having symptoms of epelitic siezures since I was a teenager. I experienced these symtoms occasionally, I never knew what they were, I always thought they were anxiety attacks. I experienced them more and more frequent, every 6-7 months, as l got older 55 years of age I started to have these anxiety attacks (seizures) more frequent, like every 2-3 months. When turned 57 years old I started to get them every month, like every 20 days, I would these attacks for 5-7 days straight and then all of a sudden the'll go away for 20 days striaght. During these 20 days I am normal as anyone else. When I was 58 years old I was experiencing symtoms of my usual anxiety attacks (seizures), while was sleeping I had a uncontrolled seizure, according to my wife I fell off the bed, my stiffen up and I was shaking out of control. I woke up on the floor, my head was bleeding, my wife and step daughter were looking down at me with the ambulance personell putting me onto a streacher. I finally went to see a Neurologist. During all my experiences with my anxiety attacks (siezures) I have written them all up in my computer and shared my anxiety attacks and siezure with my Doctor. I was diagnosed with epilepsy. As of today I am experimenting drugs that will help me with my siezure attacks. I never realized that i have been getting siezure attacks all my life from miner to mild attacks to a more severe attack that required a call to get assistence from a ambulance. I wish everyone well!..thanks for reading this experience with epilepsy and I hope everyone reading this gets treatment for their epilepsy. God bless you!

Submitted by Mel Iron Shirt on

Is thirst a factor in epilepsy, mainly focal seizures and would they last for 40 plus minutes? Thanks

Submitted by Jean Lawlor on

I'm 20 now but when I was in elementary, I remember getting these very strange feelings out of the blue, a lot of times at school but also at home where basically I would be having a normal day and then all of a sudden I would start to feel this strange feeling coming , and then it would hit me and once it did everything felt like deja vu, and I would just sit there and listen to everything around me because it was like I've heard it all before. I would be completely aware of everything but it was almost like being zoned out and sometimes I would try to talk to someone or say a random word outloud during this moment to try to get out of this weird trance but when I did, even what I would say sounded like deja vu. Looking back at these experiences I realized that during these episodes, sometimes but not all times, what people were saying around me didn't seem like how they would talk normally, like they would act very different and more "silly" if that makes sense. This feeling would last 1-2 mins and I would always have an unsettling feeling during them, and afterwards I would be extremely tired and even on the verge of crying because of how tired I became in the matter of minutes. I can only recall maybe 1-3 times I have gotten it during all of junior high but other than that I don't think I have gotten them since then so I'm not too worried about it. I have never went to the doctors over this because I don't think I realized what I was feeling due to me being really young during them, and so I never told my parents but I was just wondering, if this were a case of simple partial seizures, would it make sense for them to just stop happening over time? I still get the very rare occurrence of the feeling right before I get the episode of deja vu but it suddenly stops.

Submitted by Julia on

Hi Jean. What happens when someone has a focal seizure depends on where the seizure activity is happening in the brain. So it is possible that someone might experience thirst if the seizure is happening in the area of the brain which controls our unconscious responses such as thirst and hunger. There is some information here from the Epilepsy Foundation in America which suggests that someone might feel thirsty after a seizure as well.

It would be unusual though for this sensation of thirst to last for 40 minutes or more if it is a focal seizure. It could be worth noting what is happening and when and having a chat with your doctor about this.

Regards

Mags

Epilepsy Action Helpline Team

Submitted by rich on

Hi Julia 

Some people who have epilepsy as a child do find that their seizures stop as they grow older. So it’s possible that if the episodes you experienced were seizures you could have ‘grown out’ of them. But if you still sometimes get the feeling you got before the déjà vu you may want to mention this to your doctor. I’m guessing you are in the United States. If so Epilepsy Foundation has more information about how epilepsy is diagnosed in the United States.

Grace

Epilepsy Action Helpline Team

Submitted by rich on

I was diagnosed with FAS last summer after months of recurrent bouts of a strong, hallucinaginic episodes, always the same, the first weekend accompanied by seven attacks of vertigo that sent me to the hospital. For months, for one reason and another, I went to doctors ENTs, primary care doctors, one of whom fired me when I objected to the fact that her office took a month to send a referral from one side of town to another. These started in early April last year. In October I finally saw a neurologist who prescribed Keppra. I started taking it and five weeks in my face swelled up, edema in pockets under my eyes, and I had a rash. I was able to get into my new primary doc immediately and she took me off Keppra and gave me steroid shots etc. After it calmed down she decided I needed to see an allergist. Saw allergist in late December, finally got tested in early February and started shots later that month. I saw the neurologist in February and was stunned to realize my primary had never told him she took me off Keppra. He was quite angry but said I should finish the shots and see him in three months. My question is what I should/can do about the FASs that hit me about once a day. They are much milder than at the beginning but disorienting and ultimately scary. Is this the proper course to take? My assumption is that they want to get my body to calm down enough from allergy and inflammation that I can tolerate the anti-seizure drugs. Does this sound rational. Is there anything I can do in the meantime to mitigate the FASs?

Submitted by Lyda Phillips on

Hi there. After seeing strobe lights, a few minutes after a had a non-motor focal seizure, and I felt very sick and cold, and was struggling to continue in the conversation I was having with my mom. My seizure lasted for about fifteen seconds and after I still felt super dizzy. I was trying to figure out for weeks which seizure I had but now it seems like I had a focal. Are there any cures or something that will help?

Submitted by Sydney on

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 on

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 on

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 on

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 on

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 on

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... on

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 on

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... on

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 on

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 on

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 on

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... on

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 on

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 on

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... on

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 on

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 on

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... on

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 on

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... on

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 on

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 on

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... on

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 on

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... on

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 on

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... on

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 on

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... on

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 on

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... on

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 on

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... on

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 on

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... on

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 on

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... on

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 on

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 on

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 on

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... on

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... on

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 on

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