In this section
- Introduction
- About epilepsy
- Developing epilepsy in later life
- Triggers for seizures
- First aid for seizures
- Diagnosing epilepsy
- Treatment with anti-epileptic drugs
- Side-effects of anti-epileptic drugs
- Other ways of treating epilepsy
- Complementary treatments
- Epilepsy nurses
- Coming to terms with epilepsy
- Living with epilepsy
- Driving
Introduction
Epilepsy can begin at any age. However, you are more likely to develop epilepsy when you are young or in later life. We have written this information for you, if you have developed epilepsy in later life.
Our thanks
Epilepsy Action would like to thank Professor Raymond Tallis, Visiting Professor at St George's Hospital Medical School, University of London, UK and Jan Bagshaw, Epilepsy Specialist Nurse, Heywood, Middleton and Rochdale Community NHS, UK for checking this information.
This information has been produced under the terms of The Information Standard.
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Updated January 2011To be reviewed January 2013
Comments: read the 12 comments or add yours
Comments
a friend of mine was telling me about that you can claim for travelling costs towards childcare, as my partner has uncontrolled seisures and can never be left alone with our child, I have to have someone there when I am at work and not there, does anyone know where I can get information about this
Thanks
Hi Helen.
You could talk to Social Services about this, or ring the Benefits Enquiry line for people with disabilities. They may be able to help. Their number is 0800 882 200.
I’m not entirely sure I understand your question. If the information doesn’t help, feel free to give us a ring on the Helpline Freephone number 0808 800 5050.
Cherry
Advice and information Team
Hi, my wife has uncontrolled epilepsy and we have an 8 yr old daughter.We sound in a simular situation as i still have to go to work.If it wasn't for family and social services support i would have to give up work.
If i can help with any info just ask as i'm happy to share what we've been through.
Paul
What type of seizures does she have? How often are they? I am 40(next week), and i have been epileptic since I was 9 months old. The seizures couldn't be controlled with medication. After all of the testing(about a year worth), I was approved for a temporal lobectomy. I had it November 2009. Since then I have been seizure free!!!!! I have two boys, 5 and 7, and my life being seizure free is sooooo amazing! I know how difficult and frustrating it is with epilepsy and family. Not driving, feeling so depressed and dependent. Maybe she should go to an epileptologist instead of a neurologist. They are AMAZING, as is my seizure free life! Good luck and stand beside her!
hi hunnie .. so lovely to here you are free from epilepsy .. and your boys sound great what a happy ending .. my mother had a stroke just under 2years ago at night in her bed she woke my lovely dad up and .... he tryed to talk with her she was just makeing all this row and shakeing her body he left a phone call at 5 in the morning staying she had been taken to A.E. i lose my dd last 2 weeks ago i am so worried if she worrys she could have one i do stay with her one nit a week and my daughter does as my father was only put to rest on wes of this week .but i am so frighted when there she will have one .. it stems from my child hood .. i sat next to a girl at my school when i was ten who had fits i got so frighted ..... she doe take pills to control it and she hasnt had any for 17 months thank god ....would like some help on this one as i have just lose my dad as well time is sad right now thank you ..linda .
hi there all,my new man has epelipcey and i wont avice on how to dill with it,can any one help?
hi there
my husband is 42 years old and has just started having seizures,today he has had 2,im struggling to cope with what i see during the seizure,his whole face goes purple,he makes the most awful noises and thrashes uncontrollably,the doctors tell me that this is all normal but to me it isint normal to see the person you love go through this horrific thing. I would love some support but i dont know where to go or who to turn too,the sleepless nights are killing me,any advice would be gratefully recieved.
Thank you
Hi Lizzie
It can be so distressing when someone close has epilepsy. Witnessing a tonic clonic seizure can be upsetting. Most people find it helpful to know exactly what is happening during the seizure. So I will explain the symptoms of the seizure that you have mentioned.
When your husband makes a noise, this is because the muscles in his lungs contract, forcing out air. Due to his breathing patterns changing during his seizure, there is less oxygen than normal in his lungs. Because of this, the blood circulating in his body is less red than usual. This causes the skin (particularly around his mouth and under his finger nails) to appear blue in colour. But as most seizures stop within five minutes, the change in his breathing pattern will not cause him any long term damage. Once the seizure stops, his breathing returns to normal, and his colour should go pink again. You can find out more about tonic clonic seizure and first aid on our website.
For support, if you contact the helpline team, we can see what services are available in your area. Such as a local group and epilepsy nurse.
You can contact us by email helpline@epilepsy.org.uk or Epilepsy Helpline, freephone 0808 800 5050.
Thanks,
Advice and Information Team, Epilepsy Action
I dont know if my daughter has epilepsy, but in the last 18months she has had a lot of seizures where all her mucles seize up, shes 35 and has three children, her husband is now her carer, she was in the past very active and would hill climb, go to the gym, and was also in her second year of nurse training, her doctors have been of very little help, though she has seen a nourologist, one doctor told her it could be panic attack or carpel tunnell?? and was even told to go away and learn to live with it!! no one seems to be able to give her an answer. she can feel when one of these attacks are coming on, and she has to lie down then her legs stiffen and her arms also stiffen up and contort she also makes a grunting sound and arches her neck, she has kept a diary and her husband has even resorted to video to try and get someone to understand what is going on, the kids are now finding it difficult to deal with and get very upsett when they witness thier mum like this, we are desperate to find out what is going on but she just gets passed from one to the other and none seem to have an explanation.
one day when she visited a friend in hospital she had one of these seizures/fits and the nurses just walked past her!! not one of them even inquired if she was ok..disgusting!! someone out there please help her, its so sad to see her like this, we dont know what to do or where to go next.
Hi
This sounds a horrible situation to be in –there’s no wonder your daughter and her family are finding it hard to deal with.
When a person has muscles jerks, epilepsy is often the first condition considered. But, quite often people can appear to be having seizures, and these are not related to epilepsy.
You mention that your daughter was told she might be having panic attacks. Is this because she was under a lot of stress at the time? Some people have what look like seizures when they are stressed. But these are not epilepsy. This condition is called non-epileptic attack disorder (NEAD).
The most common tests to be done when someone has had seizures are EEGs and, sometimes scans. Some people would also have some general health tests done. If your daughter’s neurologist didn’t think they were needed, did they suggest any other course of action? For example, was she referred to someone who could deal with her ‘panic attacks’?
It’s very difficult to know what to suggest your daughter does, other than to contact the Epilepsy Helpline freephone 0808 800 5050 and speak with one of our advisors. They may be able to suggest where she could go next.
Hiya,I had an epileptic fit at 8.am on an early turn outside of work. On an early turn you start at 6a.m, did not sleep very well the night before(never do on the first early turn though. It then transpires that I had had 3 in my sleep the previous year, but thought nothing of it at the time, just thought you silly mo, what you doing falling out of bed. At the time of my full blown fit I obviously was taken to hospital, eventually released later that day, to have a night one that night (back to hospital then released again after a couple of hours). I am 53 yrs old and going through the menopause, to which my hot flushes and night sweats have come back with a vengance. I can have up to 20 hot flushes during the day and about 10 at night. The medical officer at work has decided that I am a risk at work (work in the control room at the local police headquarters) I have not been allowed on the radio since it happened in July, and now being a risk will be unable to take 999 calls, apparently he says in case I am mid call and I have another one. I am on medication which makes me very tired, but can do the 10 hour shifts. I am now worried I will loose so much money as I was on the highest grading at work as able to do all aspects at work, and now will only be allowed to do so much less.. I have not had another fit since my first full blown one. I used to love my job, been there nearly 13 yrs. Now I almost hate going in.
Hi
If you are diagnosed with epilepsy you are covered by the equality laws (Equality Act in England, Scotland and Wales and the Disability Discrimination Act in Northern Ireland). This means your employer mustn’t discriminate against you unless they can justify this. They do have to take health and safety into account – yours and your service users – but they should weigh up all the facts about your epilepsy very carefully. For example, if you haven’t had a seizure since July, and are on medication, how likely is it that you will have another one? Some employers, in this kind of situation, use the driving regulations as a guide. These ask for 12 months’ seizure freedom. Although this wouldn’t get you back to your previous role immediately, it would be worth keeping in mind. If you would be allowed to drive a car then, I’m not sure how they could justify you not being able to take 999 calls.
Whatever the decision, your employer should do their best to make sure that you are not put at a disadvantage because of your epilepsy.
By the way, you say your medication is making you very tired. It’s worth talking to your doctor about this because they may be able to do something about it. Ideally you want the medication to control your seizures without affecting your quality of life.
Don’t forget you can call us on the Epilepsy Helpline to talk things through, if you think that would help.
Best wishes.
Shelley
Advice and information team