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Local support groups

Information on where to find a group near you.

Support from Epilepsy Action

Different ways to contact the Epilepsy Action helpline

Entitlements and benefits for people with epilepsy

Possible entitlements for people in England, Scotland, Northern Ireland and Wales.

Possible benefits for epilepsy include the Disability Living Allowance, Personal Independence Payments, Employment and Support Allowance and the Blue Badge.

Online course for people with epilepsy

Our online course gives you the skills and confidence to manage your epilepsy.

Comments: read the 29 comments or add yours

Comments

Hi Debbie

Thanks for your message.  It sounds like you are going through some really tough times. Depression and anxiety have many possible causes, as you know, but it is possible that what your partner is feeling could be related to his epilepsy medicines. Depression, anxiety, and aggression are noted as possible side effects of some epilepsy medicines.

The best thing to do would be for your partner to have an appointment with his epilepsy specialist to discuss whether this could be the case, and maybe take a look at re-assessing his epilepsy medicines. But it sounds like you are having a hard time convincing him that a visit to the doctor is a good idea. Maybe you could find someone else he is close with, who he might be more receptive to at the moment, to try to urge him to make an appointment with his epilepsy specialist.

You and your partner may find our online forum very helpful. Forum4e is a place where people with epilepsy and their carers share experiences and support. It’s very likely there are members in similar situations sharing their thoughts.

Epilepsy Action also has branches around the country that hold regular meetings. To find out about meetings in your area see the local branches and groups section of our website.

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

Yours sincerely

Sacha Wellborn

Advice and Information Team

Submitted by 37204 on

My father has had epilepsy for 27 years plus. He's been on phenytoin for the full term and has recently been suffering loss of balance, loss of consciousness, shaking hands, exhaustion, a mixture of full and partial fits, extreme headaches and loss of sleep due to night terrors. He has had no episodes of fits or symptoms what so ever other than mild headaches for 25 years. We are attending NHS at the southern general Glasgow and been bounced around the neurology department with loads if tests but no one treating it with the level f concern that it deserves and therefore we are getting no answers! We have also paid for private consultations and again no answers! Can anyone recommend a specialist or some form of help to aid in over coming this problem for us? Everyone we turn to has a lack of interest of presumes this is normal epileptic behaviour but the turn from to no symptoms to a full list is extremely concerning for us as a family!

Thanks in advance.

Submitted by Douglas on

Hi Douglas
Thank you for your question. What you have explained must be so distressing for you and especially your father.

Below are details of epilepsy services in your area in the Glasgow area. There are consultants that specialise in epilepsy as well as epilepsy specialist nurses.

May I just check that your fathers Phenytoin levels have been checked?  A possible explanation for your dad’s symptoms could be side-effects of his Phenytoin. Some people who have being on phenytoin for a long time can develop a build-up of the medicine in their system that leads to an over-dosage of Phenytoin. If the doctors haven’t already look at this possibly, it’s worth asking his doctor if he can have his Phenytoin levels checked.

  • Dr Aline Russell, Clinical Neurophysiology, South Glasgow University Hospital, Consultant, Clinical Neurophysiology Department
  • Dr Andrea Caldwell, Psychiatry, Kirklands Hospital, Consultant, Psychiatry Department
  • Dr Arup Mallik, Clinical Neurophysiology, South Glasgow University Hospital, Consultant, Clinical Neurophysiology Department
  • Dr John Leach, Neurology, South Glasgow University Hospital, Consultant, Neurology Department
  • Professor Martin Brodie, Clinical Pharmacology, Western Infirmary, Consultant, Clinical Pharmacology Department
  • Dr Veronica Leach, Clinical Neurophysiology, South Glasgow University Hospital, Consultant, Clinical Neurophysiology Department
  • Dr John Greene, Neurology, South Glasgow University Hospital, Consultant, Neurology Department
  • Dr Syed Razvi, Neurology, South Glasgow University Hospital, Consultant, Neurology Department

We are also aware of the following epilepsy nurses:

  • Eleanor Arthur, Epilepsy Liaison Nurse, Southern General Hospital, Department Of Neurology, 1345 Govan Road Glasgow G51 4TF
  • Joanne Hill, Sapphire Nurse, Scottish Epilepsy Centre, 20 St Kenneth Drive Glasgow PA11 3SX
  • Kevin Kelly, Epilepsy Nurse Specialist, Epilepsy Unit, Western Infirmary, Dumbarton Road Glasgow G11 6NT
  • Pamela Parker, Epilepsy Nurse Specialist, Epilepsy Unit, Western Unit, Western Infirmary, Glasgow G11 6NT
  • Susan Yule, Epilepsy Liaison Nurse, Southern General Hospital, Department of Neurology, 1345 Govan Road Glasgow G51 4TF

I hope this is of help. If we can be of any more help, please feel free to contact our helpline team directly, either by email helpline@epilepsy.org.uk  or the Epilepsy Action Helpline freephone 0808 800 5050. We are open Monday to Fridays 8.30am until 5.30pm.

Regards

Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Thanks for your help Diane. His levels have been checked and he was taken off phenytoin but due to then taking a few severe episodes he was represcribed 400mg dose again which is when the symptoms of shaking, loss of balance and weight loss have set in. We have encountered one of the doctors on the list both privately and on the NHS and he was of no help. Thank you for the list we will work down and see if we can find some answers.

Thanks again!

Submitted by Douglas on

Can you die from your 1st major fit. Can epilepsy cause death.

Submitted by Lesley on

Hi Lesley
Thank you for your question

Most of the time, people with epilepsy recover perfectly well after a seizure, but people do die from their epilepsy. In 2013, there were 973 deaths from epilepsy were recorded in England and Wales. Unfortunately people can died in their first seizure. It can also happen in people who had seizures very often, and also in people who did not have them very often.

Some of these people died from sudden unexpected death in epilepsy (SUDEP). Others had status epilepticus and did not recover. Some deaths also happened due to a seizure-related accident.

https://www.epilepsy.org.uk/research/deaths

https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy

The most effective way to reduce the risk of death due to epilepsy is to have as few seizures as possible. If your seizures are not controlled, it would be a good idea to talk to your doctor. You may also wish to view our information on some ways that you can manage your epilepsy, to try and reduce your seizures.

https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy#other

If you would like to talk to us about this, please feel free to contact the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane Wallace
Epilepsy Action Advice and Information Team

 

Submitted by Diane, Epilepsy... on

I had a very bad seizure 4 years ago it came totally out of the blue I had been feeling unwell the previous day to of a numb sensation all down one side could hardly walk the next day I thought I had a migraine I refused to go to the GP eventually went and was told if it happened again to go to casualty,not sure how I was meant to go,wasn't classed as enpmergency started slurping my speech and fell of the couch on to the floor lay there for I don't know how long unconscious by this time no recollection at all took 3 further seizures on the way to hospital again passed out apparently had to be shocked and given rectal diazepam no history of seizures only in my mid 40's thought at the time I had had a mini stroke!

Submitted by Linda urquhart on

Dear Linda
That sounds like a really distressing set of experiences. I do hope things have been okay for you since then.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Mostly but at times it is difficult to now what is going on I am not entirely sure if I have had any more but I suspect I have,I have worked in nursing for many years so I know how varied epilepsy is.i appreciate you support.Linda

Submitted by Linda urquhart on

My husband suffers from epilepsy and can get very bad headaches. Could the headaches be a concern. He's 53 yrs & has had epilepsy since the age of 16 yrs.

Submitted by Lucy Adams on

Hi Lucy
Thank you for your email regarding your husband. Living with headaches must be so distressing for him.

Headache are not always a cause for concern. For some people their seizures can be associated with headaches. If your husband is still seeing a specialist for his epilepsy it would be best to talk to them about his headaches.

If the headaches are a new symptom, and your husband no longer sees a specialist he could talk to his GP. If necessary they will refer your husband for more tests.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Hi there,

I have epilepsy as a result of a brain haemorrhage I had as a child. Last week I had a very severe and extremely frightening seizure. As a result I've been experiencing flash backs, whereby I remember the feeling at the start of the seizure before falling unconscious. These flashbacks make me feel very upset and uncomfortable. Is this normal and how long should I expect them to last? Can you recommend any coping techniques when they happen?

Many thanks

Submitted by Sophie on

Hi Sophie
Its sounds like a terrible experience. It’s not unusual after a severe seizure to experience fear or to be anxious.

What you are experiencing are things that others with epilepsy experience. If it would help you to contact others who understand what you are experiencing we have our local groups including coffee & chat groups, our forum4e online community, facebook and twitter.

You could also talk to one of us, Advice and Information Officers, on the Epilepsy Helpline (freephone) 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Feeling anxious, depressed or stressed after a seizure are well recognised. How long these emotions will affect you and how you deal with them can have a huge impact on your overall wellbeing. For this reason we have our wellbeing section that covers topics such as:

If these flash backs are becoming a problem in your day-to-day life, it would be advisable to get help from your family doctor.

I hope this is of help and your flashbacks soon begin to lessen.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

My husband has recently been diagnosed with epilepsy following brain surgery and radiotherapy. Last weekend he had a tonic clonic seizure lasting 5-6 minutes followed by approximately 15 minutes of intense confusion and aggressive behaviour, and another 20 mins of upset before paramedics arrived. I remained with him throughout talking to him and trying to ensure his safety as he staggered about but he did bang his head twice and I ended up being pushed around and punched as I prevented him from going outside. We live remotely with no mobile signal and I felt this was too risky during the night. Any advice for the future on how to manage this better? Many thanks.

Submitted by Helly on

Dear Helly

That sounds like a really frightening and upsetting situation. Finding a way of keeping yourself and your husband safe does sound like a challenge.

The best way to minimise this happening in the future is for your husband’s seizures to get under control. What he experienced after the tonic-clonic seizure is probably something called post-ictal confusion. Post–ictal just means after the seizure.

I am guessing he has been put on epilepsy medicine and that the dose is gradually being increased. It would definitely be good to get back to the neurologist or epilepsy nurse if he has one. They may well have suggestions. If this feels difficult then talk to your GP. They may be able to help with contacting the neurologist.

I do very much hope that things settle down for you both soon. But if you would like to talk this through a bit more, or we can be of any other help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Cherry
Epilepsy Action Advice and Information team

Submitted by Cherry, Epileps... on

After returning to the UK early this year it took over 7 months for a long awaited appointment to see a consultant while we managed our daughter's medications ourselves with advice from a friendly neurologist in Scotland. The appointment was very underwhelming. The consultant asked for a history, tested our daughter's reactions and reflexes in a friendly manner. He then rattled off his recommendations at speed, saying that they would follow in a letter and shepherded us out of the door, apologising that there was no more time ... perhaps to do with the state of Shropshire's NHS. It was apparent that he had not looked in detail at the letter sent on by the above friendly neurologist, so that even the one question I managed to ask, he was not able to answer. He was courteous enough, but brisk, and we felt the appointment was worthless and we are no better off with ideas on how to treat our daughter's intractable epilepsy. What course of action do we have, please?

Submitted by Wendy L on

Hello Wendy

This sounds like a difficult situation for your family to find themselves in.

The NHS Constitution says you have a right to complain about any NHS care you have received, and to have this looked in to properly. As you are unhappy with the care your daughter has received, you could try to talk to the epilepsy doctor or to an epilepsy nurse about this. I understand that this experience may leave you feeling unable to do this though.

You could also talk to your GP about what happened and ask for options for future treatment. This may include getting another opinion from a different epilepsy specialist.

If you would like to make a complaint or comment about this experience, you could also get in touch with the Patient Advice and Liaison Service (PALS) or contact the NHS Trust responsible for that hospital.

I hope that your daughter is able to get the care and support she needs soon. If you would like to talk about this, or if we can be of any more help, please feel free to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen-Epilepsy ... on

Just to add that people with epilepsy like myself are entitled to Access To Work scheme whereby you can get free transport (Taxi) to and from work, this is something I did not know about until last year. This has opened up my employment opportunities going forward.

Submitted by Craig Fairclough on

During epileptic fit,there is contraction and closure of the laryngeal muscle which causes the grunting.Also the breathing is momentarily suspended.This deprives the brain of oxygen and can cause neuronal damage.If this occurs frequently then more neurons are damaged and these damaged neurons throws more seizures in addition to the pre-existing seizures.This is the problem with inadequate control of seizures.Seizures beget more seizures.
Adult onset seizures or worsening of seizures,one must rule out a space occupying lesions within the brain or just outside of it.It could be a bleed or a tumor.Epilepsy patients can frequently injure their head and the intracranial bleed can remain symptomless for a long time.There is also the worry about drug induced brain atrophy and bleeding secondary to it.These drugs can damage other organs and can be the cause for confusion and abnormal behavior.The drug dose that is prescribed for a young person needs to be reduced for an old person because their capability to metabolize and excrete the drug through liver or kidneys reduces with advancing age. since with advancing age,their liver and kidney reserves/function falls down.
Some epilepsies are associated with deja vu,jamais vu,depression,fear,anxiety,gustatory symptoms,vertiginous symptoms,auditory symptoms,olfactory symptoms,unformed images and lights,elation,illusions etc..Flash backs could be due to post traumatic stress disorder

Submitted by Ramesh on

Hi,

I was just wondering if anyone would be able to give me a little advice?

About 7 months ago I started having seizures; I've had an MRI scan, CT scan and one EEG which all showed fine. The NEAD people said I don't have that and since my EEG was fine so the hospital said I don't have Epilepsy and I'm just at a complete loss. I'm not allowed to drive and work have let me go since I can longer do the job....but no one wants to seem to help me?

A bit about the seizures. They all follow a similar style, I tend to get light headed and my eyes can't focus on anything, sometimes the rooms warps and bends, almost like a 'high' feeling. I blink a lot and then my left side seizes up and goes rigid, followed by convulsions in my head and left arm. This can last a few seconds to over a minute. Afterwards my speech is slurred and my face feels droopy on the left side. I tend to stare and not do much, this can last a few minuets to over an hour. As well as this I also sometimes struggle to walk after as my body is really shaky and my left leg just doesn't feel right.

I should also mention that I get a lot of head pain, sometimes it's like a hot knife stabbing, sometimes it's like a dull buzzing or even a kind of pop in my head if that makes any sense?

I've recently noticed as well that after a seizure I can not feel pain in my left arm for hours afterwards. Lights seem to trigger these events but only if they take me by surprise. Sometime at night when it's pitch black and my eyes are closed, I can see bright flashes of light.

The last thing is my memory, which is severally effected. I'm struggling to remember deatils in a conversation, or even what i was saying during one. My family has told me that i'm repeating conversations that I have no memory of and it's significantly worse after I've had a seizure.

Sorry for the long post, I'm just feeling desperate now and really need some help and advice.
Thank you,
Chelsea

Submitted by Chelsea on

Hello Chelsea

This sounds like a challenging situation to find yourself in.

As we are not medically trained I am not able to say what may be causing the symptoms which you are having. Although some of the things you have described may be experienced by a person who has epilepsy, there are other things which do not.

If they believe this is the case, then they need to offer you some more support to try to help you find a cause for what is happening. Maybe you could talk to your GP about the findings of the medical team, and to ask them how they are going to support you further with this. They may be able to support you to get another opinion if you do not agree with it.

I have also included a link to our information about dissociative seizures. You may find it helpful to get in touch with the non-epileptic attack disorder group listed on there who may be able to talk to you about other people’s experiences of getting a diagnosis. Our online community forum4e may also be useful for this.

Living with memory difficulties can be tough. There are some memory enhancement strategies you can use to adapt to living with memory difficulties. Some people find that making a few small changes in their life, such as following a set routine or adapting their surroundings, can make a huge difference.

I hope that you start to get some answers soon. If you would like to talk about this, or if we can be of any more help, please feel free to get in touch

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

hello
My daughter was diagnosed with Epilepsy and was advised to apply for personal independence payment could you advise me and my daughter how and where to go to get help with this. it's complicated with having a brain cyst which causes the Epilepsy and she struggles on a daily basis physically, mentally and emotionally.
kind regards
Eileen

Submitted by Eileen on

Hello Eileen

 

We have a factsheet about Personal Independence Payments (PIP) which tells you more about what it is, how it is assessed and the eligibility criteria for it. It also has links to some other organisations who can give you more information.

 

Applying for benefits can be a challenge, as the rules can be quite complicated. Some people tell us that they had more success with their application when they got support with this from a specialist welfare benefits advisor. This is because they have a lot of knowledge and experience. Organisations such as Turn2Us or Citizens Advice can help you to apply.


You may also find it helpful to look if there is a disabled person’s organisation in your area. These may also be able to offer you support with applying for benefits and filling in the forms.

 

Karen

Epilepsy Action Helpline Team

Submitted by rich on

My wife has had epilepsy for about 10 years, she is 58, and is on epillen. However her seizures always happen at about the same time of the day, in the evening, one about every 3 weeks. Is this common or does the regular pattern suggest that medication should be more tailored to the regular frequency and timing? Many thanks for your help

Submitted by Robert Storey on

Dear Robert 

Thank you for your question. 

Some people do have a pattern to their seizures. This can be certain times of the day and regular amount of time between them. 

Your wife could keep a seizure diary for three months. This will help her and her doctor see if there is a pattern. If there is, her doctor can discuss possible treatments with her. One possible treatment is the drug clobazam (Frisium). This would be taken as well as your wife’s usual epilepsy medicine, but just on the days when she is at a higher risk of having seizures. 

If we can be of any more help, please feel free to contact our Helpline Team directly. You can either email helpline@epilespy.org.uk or 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

Can i get dementia through having epilpsy my mum had dementia at 83 yrs. i am 67yrs and have had epelpsy since i was 7yrs. I h have osterporois athrises and a bad memerory and am a cocktail of drugs have grandmas and pedi mals

Submitted by Anne Brown on

Dear Anne

Thank you for your question.

We have looked for research to see whether people with epilepsy are at higher risk of developing  dementia  and could find no research to confirm this is the case.

If you haven’t already, you could talk to your GP about your mum’s dementia and your concerns. They may be able to give you more information on possible causes for dementia. Or you could contact Dementia UK to see if they can help you.

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

Regards 

Diane

Epilepsy Action Helpline Team

Submitted by rich on

Hello
I have had epilepsy for 20 years and Hav been fit free for over 2 years and 18 months before that. Last week I had 3 absents with in about 30mins, my absence are a mixture of confusion and the feelings of forboding and a rising feeling, this happened on the Thursday of that week I was quite unwell after its like I wait for the light to go back on but this took quite some time. a few days before the fits t I hit the corner head shutting the boot on I my head the boot hit the corner of my temple. I have had another one today no as bad.. Normally if I have absence my consultant stated that I could take an extra tablet which I do. I am on 200mg of lalmoterine one in morning and one at night. I hate going to the doctor, I have been on the same dose for over 15 years other meds did not agree with me. Any suggestion should I introduce an extra tablet a day of 50mg. Hope this all make sence. thank you.

Submitted by Julie Whitfield on

Hi

It sounds like you’ve had a difficult week with your seizures increasing and banging your head.

We’re not medically trained so aren’t in a position to advise you on your tablets.

If your doctor says take an extra tablet then clearly they feel that’s okay. You may want to check with your neurologist or epilepsy nurse whether they mean an extra 25mg or an extra 50mg.

I hope that’s useful.

Regards 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on