Edit: Wow, when we posted this there was only a few questions after around 4 hours. But it really picked up later in the day! I will get Diane to pop in the thread on the 21st and answer questions - Rich - Epilepsy Action.

Edit 2: Your questions have been sent to our helpline team, we'll try to get some answers to everyone as quick as we can. Thank you all!

Around 50 million people worldwide are affected by epilepsy. Today is the start of National Epilepsy Week in the UK. This year, Epilepsy Action and other epilepsy charities are focusing on the importance of seizure first aid. Would you know what to do if you saw someone having a seizure?

I'm Diane from the Epilepsy Action (www.epilepsy.org.uk) helpline. Please ask me any question you have about epilepsy. Different seizure types, myth busting, first aid, daily living, SUDEP, aspects of my job. Please note - I am not a medical professional. I can't diagnose or recommend products.

Proof: https://twitter.com/epilepsyaction/status/1130367717456977920

Find out more about our Epilepsy Week efforts: www.epilepsy.org.uk/epilepsyweek

If you have any confidential questions about epilepsy, please email us at [[email protected]](mailto:[email protected]) or call free phone in the UK 0808 800 5050

We're also launching the epilepsy community Discord today! A safe place for people living with epilepsy and their carers. This community is designed so you can chat with others, get epilepsy support and ask Epilepsy Action questions. Join at epilepsy.org.uk/discord

The epilepsy subreddit is another great place for support - reddit.com/r/epilepsy

Comments: 122 • Responses: 22  • Date: 

closedsidewalk8 karma

Do we know what causes epilepsy? Is it present at birth or can it develop later?

EpilepsyAction13 karma

Possible causes of epilepsy include:

  • Brain damage, for example damage caused by a stroke, head injury or infection
  • Brain tumours
  • Problems with the way the brain developed in the womb
  • Genetic factors

But in over half of all people with epilepsy, doctors can’t find a cause. It’s thought that our genes play a part in who does and who doesn’t develop epilepsy. This may explain why some people develop epilepsy with no clear cause. Researchers have found a number of genes linked to particular types of epilepsy.  There are many types that doctors suspect are genetic, but they don’t yet know which genes are involved.

GoldMUFFIN567 karma

How common is epilepsy? 1 in how many people have it?

EpilepsyAction10 karma

There around 600,000 people living with epilepsy in the UK and it affects around 1 in every 100. There around 50 million people worldwide with epilepsy.

MiniMac_UK5 karma

Your job sounds like it could have a lot of difficult emotions that come with it? What's the most rewarding part?

EpilepsyAction5 karma

When I'm able to give someone information to help them help them self. For example if someone is being discriminated against or told they cant do something. I like to help them overcome these barriers.

glocksmom4 karma

How safe is Lamotrigine? Two of my doctors want to put me on it, but I am scared of the side effects. They think it's a " better option" then the Dilantin I am on, & it would help with my anger & depression problems. I take multiple medications already & don't neccesarily think I should be adding more, or playing around changing meds that I've been seizure free with. Also to be on the lookout for a possibly deadly rash all the time, when you have dry itchy skin, seems like it would cause further anxiety & be rather futile. Anything you could tell me to help with my decision, I would greatly appreciate!

EpilepsyAction6 karma

lamotrigine is used for other conditions such as depression. Lamotrigine is a first line medicine in the UK. This means it is widely used. We suggest people look at the patient sheet so they are aware of any possible side-effects. Many people will experience no side-effect but if you do talk to your doctor. Are you being taken off dilantin for a reason?

Riothegod13 karma

Is there any correlation whatsoever between Attention Deficit Hyperactivity Disorder and Epilepsy?

EpilepsyAction1 karma

Hey, sorry for the late reply.

There does appear to be a correlation between attention deficit hyperactivity disorder (ADHD) and epilepsy. Research has suggested that almost a firth of adults with epilepsy have symptoms of ADHD, such as having  short attention span or finding it difficult to sit still.

You can read more about this research here: https://www.epilepsy.org.uk/news/news/adhd-symptoms-adults-epilepsy-64465.

Regards

Jess

Epilepsy Action Helpline Team

CalmAndSense2 karma

How do you guys deal with pseudoseizures (aka Paroxysmal Non-Epileptic Events, PNEE)?

EpilepsyAction1 karma

Hi

We have some information on first aid and treatment for pseudo-seizures and sources of support on our website here https://www.epilepsy.org.uk/info/diagnosis/dissociative-seizures-non-epileptic-attack-disorder-nead.

Regards

Jess
Epilepsy Action Helpline Team

Elephant_chair1 karma

I’m very unfamiliar with epilepsy so thank you for this thread, I’m learning a lot. My question is, what, if anything, should I do if think my friend is having a seizure? A good friend of mine has epilepsy and sometimes I’ll notice that in the middle of talking, she’ll kind of go silent and stare off into space. It only lasts a couple of seconds and then she’s back responding as normal like nothing happened. Is that a seizure? If so, should I tell her when I see it happen? Or just let it go?

EpilepsyAction1 karma

Hi, sorry for the late reply.

It sounds like your friend may be having absence seizures (https://www.epilepsy.org.uk/info/seizures/absence-seizures). If this is the case you can help by staying with her, being calm and reassuring and explaining anything that she has missed. But if she hasn’t missed anything during the seizure, it may come down to her personal preference whether it’s best to tell her or let it go. It you feel it’s possible, maybe you could ask her about it.

We have more first aid information here  https://www.epilepsy.org.uk/info/firstaid.

Regards

Jess

Epilepsy Action Helpline Team

MrMolina1 karma

I didn't develop epilepsy until I was 23. But all my life I've had auras, but we didn't connect the two until the seizures began to follow them. I'm on 3 medications which are able to stop the seizures but not the auras. The next step is a VNS device.

Would a VNS device be worth it if only to stop the auras?

EpilepsyAction2 karma

Hi, sorry for the late reply.

I think this would be a personal decision and might depend on things such as how frequent your aura’s are, what impact they have on your life, how likely the VNS would be to improve your auras and how you feel about the treatment. We have some more information about VNS therapy here https://www.epilepsy.org.uk/info/treatment/vns-vagus-nerve-stimulation and you can ask your doctor for as much information as you need. In the end it’s going to be up to you.

Regards

Jess

Epilepsy Action Helpline Team

notmycuppatea1 karma

My brother started displaying symptoms in his early 20's, they were seizures with loss-awareness that often lasted a few minutes and left him unconscious for a while and then "off" for a couple of hours.

Once the doctors found that his seizures were focal (which came as a surprise, as they really looked like tonic-clonic to the untrained eye) and resistant to several medication combinations and dosages, he was scheduled for surgery. The surgery (in 2010) removed a tiny part of his brain that manifested inflammatory tissue or scar tissue. It must have been quite close to the prefontal cortex if I remember correctly, but they agreed to surgery as the tissue appeared to be well defined and rather on the surface.

Long story short: He recovered fine, struggled with short-term memory loss for quite some time post-surgery, never had a seizure again (just killer headaches).

Now to my questions: His neurology department was really interested in his case and had him become part of a study, monitored tons of things and were just generally very excited to have him there. As far as I understand his case must have been "rare" or "specific" for them to act this way.

Can you eplain to me what might have been different about his case?

Bonus question: One of the hypotheses why his symptoms started showing so "late" in life was a delayed onset caused by his regular cannabis use starting as an early teen. Is that possible at all?

Thanks for the fantastic work you're doing!

EpilepsyAction2 karma

Hi, sorry for the late reply

We’re not medically trained doctors so we wouldn’t be able to say why your brothers case would be considered rare or specific unfortunately.

Epilepsy can develop at any stage in life. And in some cases it’s possible to identify a cause, for example brain damage caused by a stroke, head injury or infection. But in over half of people with epilepsy, doctors can’t find a cause. We’re not aware of any research suggesting cannabis use can influence the age of onset of epilepsy.

Regards

Jess

Epilepsy Action Helpline Team

benoliver9991 karma

I know a lot of people who have benefited from the great work Epilepsy Action does, including people very close to me. Thank you!

I need to ask a question for the rules so... can epilepsy ever go away?

EpilepsyAction1 karma

Hi, sorry for the late reply.

It’s great to hear that we have been of help. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition. The longer someone is seizure free, the less likely they are to have another seizure.

Regards

Jess
Epilepsy Action Helpline Team

RMWL1 karma

Why is it so difficult to get appointments for it in the UK? I've been waiting 3 months just for a triage nurse.

EpilepsyAction1 karma

Hi

It can be difficult to get appointments, and there has been a lot of concern about these issues  in the news. The NHS is struggling to cope with demand and we know how tough this is on patients.

I hope you get an appointment soon. If you need any support in the meantime you can always get in touch with us. You can call freephone 0808 800 5050 Monday-Thursday 8.30am-8pm, Friday 8.30am-4.30pm and Saturday 10am-4pm, email [[email protected]](mailto:[email protected]), get in touch with us on social media @epilepsyaction, join our discord epilepsy.org.uk/discord or get involved in the epilepsy subreddit r/Epilepsy

Regards

Jess

Epilepsy Action Helpline Team

Catrionathecat1 karma

If this is too specific a question I can remove it:

If I am maxed out on my current medication and still having 2-4 seizures a day, is there going to be another medication that could help me? I've already tried two other that seemed to do nothing, Keppra actually made my mood and balance worse and sleep a lot.

And is there a chance my neurologist will tell me I may be drug resistant or have refractory epilepsy?

I am definitely going to talk with the neuro about it next appt but it's been a year since my first episode and I've only had three seizure free days and I'm beginning to think this is going to be the rest of my life.

EpilepsyAction1 karma

Hi, sorry for the late reply

Refractory epilepsy doesn’t mean there is no medicine that’s going to offer you any help at all with seizure control. It means that it is proving difficult to get your seizures under control. As there are over 20 epilepsy medicines (available in the UK) it is definitely worth encouraging your neurologist to talk with you about what other possibilities there are for you. This could either mean different epilepsy medicines, or different combinations. Or it could mean exploring other treatments such as VNS, surgery or the ketogenic diet. These aren’t suitable for everybody. But you may well want to explore the possibilities with your neurologist.

Sometimes the fact that epilepsy medicines aren’t working will suggest the possibility of non-epileptic or dissociative seizures. I have added the links to more information about all these things. I hope you find them helpful.

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

https://www.epilepsy.org.uk/info/treatment/uk-anti-epileptic-drugs-list

https://www.epilepsy.org.uk/info/treatment/surgery

https://www.epilepsy.org.uk/info/treatment/vns-vagus-nerve-stimulation

https://www.epilepsy.org.uk/info/treatment/ketogenic-diet

https://www.epilepsy.org.uk/info/diagnosis/dissociative-seizures-non-epileptic-attack-disorder-nead

Regards

Cherry  

Epilepsy Action Helpline Team

OldTomToad1 karma

This is timely. A new child at my sons school has epilepsy. They’re 10. The children have seen her fitting a couple of times and have been frightened. As far as I can tell they’d not been informed of her condition or told anything prior to her fitting. We’ve (obviously) reassured our own children, explained why / how and that they shouldn’t be frightened but are there any resources, suitable for 10 year olds, to explain things, or even make suggestions on how they can help when she has a fit?

I also want to make sure the other kids are kind to her and I think this’ll come from them understanding her condition better.

EpilepsyAction1 karma

Hi, sorry for the late reply.

We have information to help children understand epilepsy. https://www.epilepsy.org.uk/info/children

In the UK, if a child may have a seizure in school, the school should do an IHP for the child. This should be shared with relevant staff members. https://www.epilepsy.org.uk/info/education/education-and-epilepsy

Pupils in school should know to tell a member of staff immediately if a child has a seizure and needs help. The school could give general epilepsy awareness training to the pupils, to make sure they recognise when a child may need help. Some schools may do this as a disability awareness day so no child is singled out.

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

St1flers_mom1 karma

Do you know if there are any positive effects of using CBD - oil to treat epilepsy?

EpilepsyAction2 karma

If this is too specific a question I can remove it:

If I am maxed out on my current medication and still having 2-4 seizures a day, is there going to be another medication that could help me? I've already tried two other that seemed to do nothing, Keppra actually made my mood and balance worse and sleep a lot.

And is there a chance my neurologist will tell me I may be drug resistant or have refractory epilepsy?

I am definitely going to talk with the neuro about it next appt but it's been a year since my first episode and I've only had three seizure free days and I'm beginning to think this is going to be the rest of my life.

We have seen cases of positive effects of people using CBD oil to treat epilepsy. But, there needs to be more research into this area. Here is our information on medical cannabis and epilepsy.

iocheaira1 karma

I don't know if you can answer this question, but how worried should we be about medication supply after Brexit? Everytime I go to the pharmacy, there's all these "Do not panic" signs which are actually kinda unnerving

EpilepsyAction1 karma

Hi there, we've been closely monitoring the situation and have lots of information about potential shortages and access to medicines for the previous Brexit date. You can find information about no deal here and the Serious Shortage Protocol here.

The general advice is not to stockpile because there should be procedures in place for access to medicines.

We have been in touch with Matt Hancock and other MP's to voice our concerns and will continue to work up until the new proposed Brexit date.

Naturally_Smitten1 karma

When someone is having a seizure, what should one do for the person?

EpilepsyAction1 karma

Hi thanks for the question, some simple steps to follow are A C T I O N.

Assess - Assess the situation - are they in danger of injuring themselves? Remove any nearby objects that could cause injury

Cushion - Cushion their head to protect them from head injury

Time - Check the time - if the seizure lasts longer than five minutes you should call an ambulance

Identity - Look for a medical ID card or bracelet. It may give information about person's seizures and what to do.

Over - Once the seizure has stopped, put them on their side. Stay with them and reassure them as they come around.

Never - put something in their mouth.

You can see more about epilepsy first head at epilepsy.org.uk/epilepsyweek

J_eseele1 karma

I know you might be asked this all the time but could you please tell us what should a bystander do when someone is having a seizure?

EpilepsyAction3 karma

Hi thanks for the question, some simple steps to follow are A C T I O N.

Assess - Assess the situation - are they in danger of injuring themselves? Remove any nearby objects that could cause injury

Cushion - Cushion their head to protect them from head injury

Time - Check the time - if the seizure lasts longer than five minutes you should call an ambulance

Identity - Look for a medical ID card or bracelet. It may give information about person's seizures and what to do.

Over - Once the seizure has stopped, put them on their side. Stay with them and reassure them as they come around.

Never - put something in their mouth.

You can see more about epilepsy first head at epilepsy.org.uk/epilepsyweek

DavidStHubbins111 karma

Has there been any recent breakthrough research or anything regarding understanding epilepsy or how to treat it? From what my neurologist has stated figuring out what prescription works isn't an exact science and is more of a guess and check.

EpilepsyAction2 karma

Epilepsy is still a condition that isn't fully understood. There is research happening and we try to keep people up to date on our news page. This is the research Epilepsy Action is involved in https://www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in

lindsayturtle1 karma

My daughter is 18 months old and began having tonic clonic seizures at 10 months. She also has what we think are focal seizures. She is not responding to meds yet. How commonly are they outgrown? What can I do as a parent to keep her safe? Can early onset seizures like hers cause developmental delays?

EpilepsyAction1 karma

Hi, sorry for the late reply.

Some types of childhood epilepsies are outgrown, with seizures stopping during adolescence. But other types of epilepsy are more likely to continue into adulthood.  And different children will have very different experiences of how epilepsy affects them. Some children can have developmental delays and learning difficulties, whilst others have no problems. We have more information about learning and behaviour on our website here https://www.epilepsy.org.uk/info/education/learning-and-behaviour Hopefully your daughter’s epilepsy nurse or epilepsy specialist, who will know more about her epilepsy, may also be able to answer some of your questions.

You may find our safety (https://www.epilepsy.org.uk/info/daily-life/safety) and first aid (https://www.epilepsy.org.uk/info/firstaid) information helpful. And we also have a section of our website just for parents  https://www.epilepsy.org.uk/info/children-young-adults/children

And

Regards

Jess

Epilepsy Action Helpline Team

GetCapeFly1 karma

I had what my doctor called juvenile epilepsy and “grew out of seizures”. How common is that? I take a low dose anticonvulsant now but hadn’t had a seizure since I was a teenager.

EpilepsyAction1 karma

Hi,

Sorry for the late reply.

Some children can outgrow some types of epilepsy.

In the UK if you have been seizure-free for at least 2 years, your epilepsy specialist might talk to you about the benefits and risks of stopping your epilepsy medicine. They will only suggest this if they think your risk of having seizures in the future is low. Here are some of the things they will consider before making this decision:

· How long you have been seizure-free – the longer you have been seizure free, the less likely you are to have another seizure

· How many epilepsy medicines you take – if you needed more than one epilepsy medicine to control your seizures, you are at a higher risk of having seizures if you stop taking your medicine

· The number of seizures you had before they were stopped with epilepsy medicine – the more seizures you had, the higher the risk that your seizures will return

· The type of your epilepsy or syndrome – some types of epilepsy, such as juvenile myoclonic epilepsy, will usually return if you stop taking medicine

· How old you were when your seizures started – some types of epilepsy that begin in childhood go away when you become an adult

If you do stop taking epilepsy medicine, you will usually do it very gradually. Your epilepsy specialist will advise you how to do it. It could take a few months to stop completely.

Regards

Diane

Epilepsy Action Helpline Team

theDinoSour1 karma

I had focal onset epilepsy when I was 13, was on carbamazepine for 2-3 yrs before stopping the medicine and was seizure free for 20 yrs with no meds.

The epilepsy returned 5 yrs ago when I was 33 and I've been controlling it with lamotrigine.

Do you know what may trigger it to return like that?

Thanks!

EpilepsyAction1 karma

Hi, sorry for the late reply

Unfortunately some people do just have their epilepsy return for no obvious reason. Here is all our information about triggers though, in case there is anything there that you think might be relevant: https://www.epilepsy.org.uk/info/triggers It’s great that the lamotrigine is controlling your seizures though.

Regards

Cherry  

Epilepsy Action Helpline Team

audab11 karma

How was I just diagnosed with epilepsy at 19? Seizure “threshold” was lowered by an accidental double dose of Wellbutrin (600mg causing 2 tonic-clonic seizures in a row hours later), but having a tonic-clonic seizure during the EEG exposed JME. Have I always had it?

EpilepsyAction1 karma

Hi, sorry for the late reply

Difficult question. But we all have a seizure threshold. Some things can lower a person’s seizure threshold for a short time. And for other people this is lowered consistently enough for them to have more frequent seizures.

As epilepsy is defined as recurrent seizures then you will not have had epilepsy before you had the seizures.

I hope that helps to make things a bit clearer.

Regards

Cherry  

Epilepsy Action Helpline Team