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of everyone affected by epilepsy

Help and support

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.

Comments: read the 19 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

Hi I'm Evie, I got diagnosed with epilepsy at about 9/10 and I am 17 in a months time. I have been on medication since last year and as far as I know the absences have stopped but I can't be sure I am eager to start driving but obviously know how stupid it would be to take any kind of risk what do I do?

Submitted by EvieRose on

Hi Evie

The driving and epilepsy laws say you have to be seizure free for 12 months in order to apply for your driving licence:  epilepsy.org.uk/info/driving/driving-licences-group-1-rules

Your doctor and the DVLA would need you to be sure you were no longer having absences before you started learning to drive.

I can only suggest that you ask people around you if they think you have had absences over the last 12 months. And then you would just have to give information to the best of your ability.

Hope that helps.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

My Daughter has had partial seizures for the last 5 years and has tried at least 5 medications but none of these control the seizures very well. She does have a underlining problem (a lesion on her left temporal lobe). Does this mean she will never get the seizures under control completely? She has been offered surgery but has declined as she feels too risky. Has anyone else had same problem? Ime a very upset mother as you can imagine.

Submitted by Susan Dickinson on

Hi Susan
It is a really difficult situation when someone has epilepsy which is difficult to control, especially when its someone close to you. Sometimes the partial or focal seizures are more difficult to control, especially when there is a physical cause.

There are more epilepsy medicines though, so it may be that in time she will find the epilepsy medicine that works as well as possible for her. Here is our surgery information in case that’s useful

Meanwhile either or both of you may be interested in our online community, forum4e.This is for people with epilepsy and carers of people with epilepsy. It can be really useful to connect with other people in a similar situation to you.

Also, if you look on our Near me pages you and your daughter may find a coffee and chat group or a local event that you may be interested in.

You may also want to check if there is a Seize Control event near you.

I really hope this information is useful for you and your daughter.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... 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