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of everyone affected by epilepsy

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Information on where to find a group near you.

Support from Epilepsy Action

Different ways to contact the Epilepsy 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.

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Comments: read the 36 comments or add yours

Comments

My 87 yr. old mom has has 1 previous seizure 3 months ago and had
another milder seizure about 11:10 this am EST and has sleeping ever since. Should I wake her up after she has been sleeping peacefully for over
3 hours? She has home hospice care because of congestive heart failure. she is currently taking 2- MS Contin, 15mg daily,1-30mg issorbide daily,120mg of lasix daily,10meq of KCL daily.

Submitted by Terry Terrell on

Hi Terry

I’m pleased the Hospice RN called you back to advise you.

The general advice following a tonic clonic seizure is to let the person rest. For some people this may be sleeping for a few hours. To learn more on how to deal with a seizure please visit

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

From your posting it’s not clear if your mum takes epilepsy medicine or not. There are many different epilepsy medicines available, so it could be worth discussing her epilepsy treatment with her epilepsy doctor.  For local support and information on treatment, you may wish to contact an epilepsy organisation near to you.

https://www.epilepsy.org.uk/about/international-epilepsy-organisations

If we can be of any more help, please feel free to contact us again

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

Hospice RN called me back and said to let her rest.

Submitted by Terry Terrell on

Hi I only have seizure when I am asleep I had too EEG's and a MRI but they only showed I slight abnormality is there any more tests that I could have to show more and to say why I have my seizures

Submitted by Stephen walsh on

Hi Stephen

Thank you for your messages. There are no more tests that we could suggest you have. The EEG and the MRI are two of the most likely tests to have done when you have had seizures. The MRI looks for possible causes of seizures, and sometimes shows abnormalities. You could ask your doctor to explain whether the abnormality shown on your MRI might have caused your seizures. But sometimes abnormalities are just something you are born with, and don’t cause you any problems, so your abnormality might just be a coincidence.

Even though it’s frustrating not to know why you have developed epilepsy, you are in good company. Around six out of 10 people who are diagnosed, have no known cause. It’s thought that its just a part of how they are made that makes them more likely to have seizures.

Regarding your question about the ta, I think you are meaning the Territorial Army. If you do, you have to meet the same medical conditions as you would in the regular army. This is what they say about epilepsy:

You would NOT be able to join the Armed Forces if:

  • you have been diagnosed with epilepsy and you have had more than one seizure since the age of five years; or
  • you have had a single seizure in the last 10 years.

You MAY be able to join the Armed Forces, possibly in restricted jobs if:

  • you have had febrile convulsions before the age of six, and no seizures since then; or
  • you have had a single seizure more than 10 years ago, and have not been on treatment since then.

So, as you have had seizures after you were five years old, you will not be able to join the TA.

If you would like to talk to an adviser about any of these things, please call the Epilepsy Helpline freephone 0808 800 5050, and we will do our best to help you.

Kathy

Advice and Information Team

Submitted by kathy on

My 62year old wife had. Brain hemorage due to ruptured anurisum.
Four months in hostipal. Discharged, then two months later had a sezure. She has now been on tegretol for six years without any sezures.
A little while ago she had a skin rash that seems to have gone, but now she has pain in her leg joints which she is now having to take pain relief for.
Is this something that is connected or arthritas ?

Submitted by phi on

Hi Phi.

There could be a number of reasons why your wife is having pain in her leg joints. It’s not necessarily anything at all to do with her Tegretol medicine. So, it’s advisable for your wife to discuss her pain with her own GP.

Best wishes

Amanda

Advice and Information Team

Submitted by amanda on

Please Someone Help Us!!
My son was dianosed 3 yrs ago at age 13 after his first Full! fit.he is now 16 yrs on 1000mg twice daily of keppra and is mentally very ill... angry, awful thoughts, tired, and still having fits!! we need help!!!!

Submitted by natalie drew on

Hi Natalie

This sounds like a very difficult time for you both. At the age of 16 it must be extremely difficult for your son to understand and cope with what is happening.

As your son is still having seizures and other difficulties, it’s important he sees a doctor to have this looked into. Ideally he should see an epilepsy specialist. A specialist in epilepsy can try find out why your son’s seizures are not controlled and also see if his other symptoms are related to his epilepsy or his keppra.

The specialist should review his treatment and look at other possible reasons for his seizures and emotional problems to be happening. They may suggest trying a different epilepsy medicine.  If your son has tried various types of epilepsy medicines, it may be the specialist could look into other treatment options for him.

If your son is not under a specialist, you will need to ask your family doctor to refer him. The ideal would be to someone with a specialist interest in epilepsy.

If you contact the helpline team with details of where in the UK you live, we will see if there is an epilepsy nurse that may be able to offer you both support.

We can also see if there is local group to you. You and your son may also be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. People can find it really helpful to talk to other people in a similar situation.

If you or your son would like to discuss this further with our helpline team, please feel free to phone us on 0808 800 5050.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

My Husband has had epilepsy for about 25yrs.Originally he was taking Phenytoin,then after a few yrs doctor said phenytoin was getting fazed out and he had to take Lamotrigine.Whilst trying to wean him off Phenytoin ,he started to have more fits.Now, he's on Phenytoin 250mg at night and Lamotrigine 200mg morning and night.He has'nt had a Grand Mal fit for ages,but has absences sometimes,and I am unsure if he's took his meds.He only ever has his bloods checked if he's had a fit.which I think is wrong.I can't understand how he can drink alcohol and then take his meds,when I try to explain this to him,I feel like I am his mother ,and not his wife.....

Submitted by Linda Edwards on

Dear Linda

Thank you for your post.

Regarding your concerns of whether or not your husband should have a blood test. Unlike Phenytoin, drug level monitoring of other epilepsy medicine isn’t helpful. Therefore, the doctor may not do blood tests when your husband is just on lamotrigine. Blood levels may be taken if the doctor wants to check something specific.  This could be to check a person is taking their epilepsy medicine regularly or if they think a person is getting side-effects because the dose of their epilepsy medicine is too high.

Please visit our website for our information on alcohol and epilepsy. Whether to drink alcohol or not, is an individual decision.

As you are finding out, it’s not just difficult for the person with epilepsy, it can be difficult for those close to them. Knowing what to do or say is a difficult situation to be in. If you think it may help you and/or your husband to contact others in a similar situation, we have different ways to help with this. We are on facebook, twitter and we have an online forum, forum4e.

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.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

My husband has been looking for work since November 2013 when he was dismissed from his job on capability grounds following 2 seizures earlier in the year and then a 7-month period of medical suspension. While he was off he had been liaising with DWP and Access to Work (various offices around the UK!). Although arrangements for him to use a taxi to get to and from work was confirmed, he never used it as he lost his job. Unfortunately, the DEA at his jobcentre retired and he has been left to fend for himself ever since. He simply cannot get an appointment to discuss how he should deal with the issue of travelling to interviews (when he is currently suspended from driving) which are at locations not easily accessible by public transport, but which he could drive to if he were allowed to drive; or whether or not he should admit to his condition and when is the best time. Apart from the blips mentioned above, he had been seizure free and since a change in medication last year, he has returned to being seizure free (so far). How does he get referred to the DEA at his Harlow jobcentre if they simply refuse to refer him? How does one escalate a complaint? He has tried, but nothing happens. all efforts to get additional help have failed. He feels like he is being discriminated against.

Submitted by Jo on

Dear Jo

Thank you for your further comment.

If your husband is not happy with the service he is receiving from his local Jobcentre Plus he should ask to speak to the Jobcentre Plus manager. The manager can give a valid explanation as to why your husband isn’t being referred to a Disability Employment Advisor (DEA).  Generally a person is referred to the DEA if they need extra employment support because of a disability or health condition. Also a person may need to be receiving certain welfare benefits. If your husband after talking to the manager is not satisfied with their service, he can ask the manager for their complaints procedure.

Not everyone with epilepsy will be entitled to see the DEA or receive Access to work. May I suggest that you or your husband contact our Epilepsy Helpline team on freephone 0808 800 5050 to see if we can work out if he’s eligible or not.

Finally we have information on our employment webpage which explains how and when to declare epilepsy to employers

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

Hi,
I'm 16 years old and I'm not eplileptic and have never had a seizure, however a few months ago one of my friends had a seizure while she was with me and its been scaring me ever since, I'm terrified its going to happen to me and have started feeling anxious and getting muscle twitches and kind of what feels like palpitations in my muscles, I've been to the doctors who are linking it to my anxiety but I'm still terrified as its just not going away, could it be epilepsy?

Submitted by Nina on

Hi Nina

It must have been upsetting and difficult to see your friend have a seizure for the first time. Many people say that by learning about epilepsy and first aid it helps them feel they could cope better if another seizure happened. If you would like to learn more about epilepsy, you may wish to visit our young people’s website section.

http://youngpeople.epilepsy.org.uk/

https://www.epilepsy.org.uk/info/what-is-epilepsy

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

We are not able to say if you have epilepsy or not, as we are not doctors or nurses. But from our experience, your symptom’s do not sound typical of epilepsy. What you could do, is keep a diary of your symptoms. A diary can be a helpful record of what’s been happening to you, to help your doctor make a diagnosis.

I hope this is of help. 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.

Yours sincerely

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

Hi, I'm just looking for some advice really. My partner has epilepsy and is currently on 1500mg BD Keppra and 300mg Phenytoin BD. I am really concerned about him at the moment though because he seems extremely stressed out. He shouts at every slightest thing, including the poor dogs and is having a lot of mood swings. Having suffered with depression and anxiety myself, and also working in various mental health settings I do recognise that some of his symptoms are related to depression but he is adamant it's just me and that I'm the one with the problem. In some ways its tearing us apart because I don't know how much more of it I can handle. I was wondering if these symptoms could possibly be side effects from the medication that he's on though but seeing as he won't admit to them, I cannot get him to go to see his GP. Does anybody have any advice on how I can either help him through this, get him to the docs or live with it??? I love him to bits but I'm struggling.

Submitted by Debbie on

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 Sacha on

Hello, I was diagnosed with epilepsy last November after having a second seizure (the last one was 25 years ago!) I am on Lamotrogine 50mg in the morning and 100mgs at night. Over the last 4 months I have been experiencing pins and needles in my face and tongue, usually on the right side and sometimes in my right hand and foot too. I have been having headaches (usually waking in the night with them) and they are lasting anything up to two days. they are normally from the top of my eyes through my temples jaw back of my head (behind the ears) and my neck. I am concerned that these might also be seizures? My aura on both occasions was feeling like I had just got of a roundabout and my head was spinning. I am due to see my neurologist mid-June and my epilepsy nurse mid July but wonder whether I should contact her now? Thanks

Submitted by Cathie Palmer on

Hi Cathie

Sorry but I can’t say what is causing your new symptoms. As these are new symptoms since you last saw your neurologist, I would advise that you talk to your neurologist, epilepsy nurse or your family doctor about them. They can hopefully diagnose and arrange treatment to help you.

I hope things improve for you very soon.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

Hi my son has had epilepsy for 19 years and always lived at home .he has always worked as much as possible but sometimes struggles to hold down the job because of fits.he became homeless at the beginning of the year and luckily was found a flat of his own. He has been on sick benefit because of his worsening fits for 6months.now his doctor says its his last sick note.he is worried what will happen if he doesn't get any sick pay or if he can't hold a job down because of his fits.he thinks he will lose his flat and be homeless again. I try to help him best I can but I dont know what benefits he may be entitled to.hope you can help put our minds at ease .

Submitted by ann ward on

Hi Ann

It sounds like your son is in a difficult situation. For best advice on work and benefits he could visit a Citizens Advice Bureau or his local welfare rights unit. Or he could ring Turn2Us on 0808 802 2000 for benefits information. Shelter would also be able to give him housing advice.

If he is in housing association or supported accommodation they may provide some benefits advice themselves.

If your son is feeling he may like some support around his epilepsy, he may be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. People can find it really helpful to talk to other people in a similar situation. Contact with our helpline is also available through many channels. We are here by telephone on 0808 800 5050, or we are also on Facebook and Twitter.

And here is information about our other support services in case he is interested in any of them.

You may also want to be sure that your son is getting good treatment for his epilepsy. If he has not seen a neurologist recently, it would be a very good idea for him to do so. It may be possible for him to get better seizure control than he currently has. And that could well improve all his circumstances. His GP could always refer him to a neurologist if he needed a new referral.

I do hope things improve your son soon.

Cherry

Advice and Information Team

Submitted by Cherry-Epilepsy... on

Can I bye a floor alarm for my son as he falls out of bed during a suizure

Submitted by Denise on

Hi Denise

Thank you for your comment. There are many different types of alarms and monitors. Our daily living aids page lists contact details for several organisations that have them. If you talk to some of them, they should be able to advise you on what alarms might be suitable.

Sacha                                                                                                                                                                              

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

Hello.

I have just been diagnosed with temple lobe epilepsy. There is only one main question I have and it's regarding my job.

I am currently off sick from my job as firefighter. I have an appointment with the brigades specialist in three weeks time. But was trying to find out what they are going to say regarding my future.

Can you have epilepsy and still work as an operational firefighter?

Thank you

Submitted by Simon Towler on

Hi Simon

Because you have epilepsy you are covered by the Equality Act. This means that your employer can’t make decisions about you just ‘because you have epilepsy’. They have to make decisions based on your personal circumstances.

So if you continue to have seizures that alter your consciousness, then your employer may decide that being an operational firefighter is not safe enough.

This is the way things should work. Once your employer knows you have epilepsy, they have to do a risk assessment. If any risks are identified, they then need to consider any possible reasonable adjustments.

In your circumstances it may be that they would look at the possibility of something more office based until your seizures are under control.

We have a range of information about work that you might find useful.

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.

Cherry

Advice and Information team

Submitted by Cherry-Epilepsy... on

So, a year after losing his job because of epilepsy, and 6 months after the only financial support he was entitled to, JSA, stopped, my husband gets a job. He had been seizure free throughout, until earlier this week, when he had his first for a year. My husband did not tell his employer he was epileptic, other potential jobs had 'disappeared' when this was mentioned it. Having since confessed to his new employer, he asked his manager: 'Would you have employed me if you knew about the epilepsy?' The answer was 'Yes'. If this is the case, why is my husband now at risk of losing his job? surely if you are prepared to employ epilepsy sufferers, you have safeguards in place? It is really frustrating, particularly has no help or understanding was forthcoming from the Jobcentre when he repeatedly explained that potential employers simply would not entertain the idea of employing him. Does anyone have any advice on what his next step should be, if he is out of work again?

Submitted by Jo on

Hello Jo

Thank you for your question. Work issues can be some of the most difficult for people with epilepsy.

Your husband is covered by the equality laws. But, it depends on the nature of the work as to if his job could be at risk.

If your husband’s epilepsy affects his ability to do his job safely, his employer may be able to dismiss him. Now that they are aware of his epilepsy, your husband’s employers will have to do a risk assessment. This is to see if there are reasonable adjustments that could be made in the workplace, to make it safer for him and his colleagues at work. It could be that with some reasonable adjustments he will be able to continue at his job. To learn more about work and epilepsy, please see our work section.

If you would like to talk about this in more depth, please contact our helpline on 0808 800 5050

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

My dad has been taking AEDs, specifically Tegritol and phenytoin since last 27 years and he is now 61 years old. I have noticed that he has changed considerably with respect to intelligence and cognition. He keeps forgetting things, is always doubtful or unsure, and nervous. The confident and capable man who could manage work under three bosses has now completely lost all confidence in himself. He was seizure free for a period of two years and we decided to consult the neurologist whether we can reduce the dosage of the drugs, and he agreed. Now for the first time in so many years observed some genuine improvement in his mental health. Of course he was still nervous and uncertain, but his response timing to everything were better. His memory improved too. Things went on really well and it gave our family hope that his health was getting better and that my dad may be able to live a normal life even without the medicines.
But then within 6 months he started getting seizures again. It was more frequent and so we consulted the doctor who advised going back to the same dose levels.

Now I read a few articles and found that there is usually a deficiency of some vitamins in the body as a result of side effects of AEDs, vitamins that are essential for a healthy neurological functioning. Is it advisable to start multivitamin supplements for him right away or should i consult his doctor about this?

Submitted by pia on

Hi Pia

Thanks for your message.

I am unsure about whether your father consulted the neurologist before going back on the phenytoin and Tegretol. Going straight  back to the same dose as previously, unless it was an extremely small dose, would not usually be recommended.

It may well be worth your father having a conversation with the neurologist about whether being on both those medicines at those doses, is the best thing for him now. If the neurologist thinks that this arrangement could be changed at all, this could make quite a difference to your father’s short and long term health.

Phenytoin is an older epilepsy medicine which can have a number of long- term side-effects including affecting the balance of various vitamins and minerals in your system. It is advised that someone taking phenytoin gets regular blood tests to check that the levels of phenytoin in the blood stream are still safe.

One of the added issues with the older epilepsy medicines is that there are many things that don’t go well with them. We wouldn’t recommend vitamins unless the doctor had found a clear shortage of them. But it’s important to know that even if you are buying things like vitamins over the counter, we would still advise your father to check with his doctor about whether there is any problem with them.

A particular issue with Tegretol and phenytoin is the possibility of osteoporosis. He may want to talk to his specialist or his GP about this.

I do hope things settle okay for him. But 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.

Cherry

Advice and Information Team

Submitted by Cherry-Epilepsy... on

Thank you very much for your invaluable reply!

In my statement "He was seizure free for a period of two years and we decided to consult the neurologist whether we can reduce the dosage of the drugs, and he agreed" - 'he' is the neurologist. That means the doctor advised on reducing the dose after doing a couple of tests. However, since the seizures returned, the doctor recommended we continue with the dose he had earlier. For example : initially he was taking two tablets a day which was reduced to only one per day, by the doctor. After getting seizures again, he was advised to return to the two tablets regime.

Taking your suggestion, I will definitely consult the doctor regarding osteoporosis as well as the vitamins.

Thanks again!

Submitted by pia on

Adhd and Ocd can my family receive from gene. Get from my Epilepsy which was caused from a malformation of growth in my mothers womb. I have had Epilepsy Sez from the age 11 now I am 53 and both of my Grand children have Adhd and Ocd I would never of had children if I thought anything would be passed down no other has epilepsy or diagnosed

Submitted by alisone on

Hi Alison

That sounds like you’re dealing with some difficult thoughts and feelings.

It is possible to inherit ADHD. I have linked you to some information about this.

I don’t know if you or your mother were told of a reason why you developed epilepsy. But there are various ways in which this is possible. Here is all our information about inheriting epilepsy.

I do hope your children and grandchildren are lovely enough for you not to regret too often that you had them. Even when people do pass on their genes, it’s never done deliberately to make life difficult. Hopefully you can also find some lovely things you’ve passed on to them.

It’s easy enough for me to say ’don’t feel bad about this’. But I’m guessing it’s a lot more difficult for you to stop feeling that. Maybe talking to your children about how you feel might help? If not, maybe you could ask your GP if there’s someone you can talk to about how your feeling.

I really hope this information helps you to feel easier in yourself. 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.

Cherry

Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

I was diagnosed with epilepsy when I was 15 years old I'm now 57 I was told it was a disability but I don't get anything for having the illness don't understand why my tablets were controlling me now they are just about I'm waiting to be referred back to the hospital I'm puzzled why I don't ?

Submitted by steven mansell on

Hello Steve

Thanks for your comment. I’m sorry to hear that your seizure control is not as good as it used to be. It’s a good idea to have an epilepsy review with your consultant, so I'm happy you have a new appointment coming up. An individual’s epilepsy can change over time. The frequency and type of seizures you get can change.

There are some benefits that people with epilepsy get. These are free prescriptions, and if you are unable to drive because of your epilepsy, free bus travel. Beyond this, any other benefits depend on you individual daily living requirements.

I hope things start to improve soon.

Kind regards

Sacha
Epilepsy Action Advice and Information Team

Submitted by Sacha, Epilepsy... 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

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