Epilepsy in later life
Introduction
Many people believe that epilepsy is something you are born with. In fact, epilepsy can begin at any time in life, from birth right through to old age. It is only relatively recently, however, that doctors are realising just how frequently epilepsy begins in later life. And, because people are now living longer, epilepsy in older people is now very common.
If you developed epilepsy in later life, this information is intended for you. Epilepsy is very complex. It is not our intention to cover every aspect or to go into detail here. However, we hope that you will find this a useful introduction to the condition.
Why might I have developed epilepsy now?
There are a number of possible reasons why you might have developed epilepsy now. Additionally, it is said that people who develop epilepsy have a lower ‘seizure threshold' or resistance to seizures than people who do not have the condition. Each person's level of seizure threshold is something they are born with. When a low seizure threshold is combined with one of the possible causes, epilepsy can develop.
In some cases, there does not have to be a cause, the seizures are just ‘one of those things'. However, when epilepsy begins later in life, it is more usual for a cause to be identified. Your doctor or epilepsy nurse should be able to give you information about your own particular epilepsy.
Treatment
The main way epilepsy is treated is with anti-epileptic medication. This is taken regularly each day, not just when a seizure happens. The idea behind it is to prevent further seizures, and doctors may recommend that you continue to take the medication indefinitely.
Memory
Some people find that their memory gets worse with age, without there being any particular cause. Epilepsy and AEDs can occasionally make memory problems worse. This can usually be improved by adjusting the AEDs to reduce side effects and ensure best control of the seizures.
- A factsheet on epilepsy and memory is available from our online shop
- Read more on Epilepsy and memory
Other health problems
If you have any other medical conditions and/or are taking other medication, do be sure to tell your GP and any other doctor treating you. This may be important when deciding what treatment is best for you.
Making treatment easier
- Most AEDs are available in different formulations, not just tablets or capsules. These include liquids and chewable tablets. Ask your GP to prescribe these if you have difficulty swallowing tablets.
- Ask the pharmacist for clear instructions, in large print if necessary.
- If the packaging is difficult to deal with, ask the pharmacist to change it.
- Ask the pharmacist about Dosette boxes. These will keep your medication organised and help to ensure it is taken at the right time.
- Find out about other special pill containers and reminders that might be useful to you.
- Further information on medication aids is available from Epilepsy Action.
Coming to terms with epilepsy
Being diagnosed with epilepsy at any time in life can come as a shock and some people find it difficult to come to terms with. There can be all sorts of reasons for this. Some older people will inevitably remember how epilepsy was perceived and treated years ago and may fear that little has changed.
The good news is that a lot has changed. The drugs now available are hugely improved in terms of effectiveness and side effects. Doctors' knowledge about the condition is far greater than it was. And, although you may still encounter misunderstanding and prejudice, there is no doubt that public attitudes to epilepsy are changing – for the better – all the time.
Living with epilepsy
You may feel that life has completely changed, now that you have a diagnosis of epilepsy. You may feel you have lost some self-confidence and are anxious about having further seizures. Of course it is important to be sensible and not take unnecessary risks. But it is equally important to live your life as fully as you did before the epilepsy, only avoiding activities that would be dangerous if a seizure occurred. The following are some suggestions to help with day to day living.
- Consider telling other people about your epilepsy and how to deal with your seizures.
- Consider carrying an epilepsy identity card or wearing identity jewellery, such as that available
- from MedicAlert (Some Lions Clubs can help with the cost of this.)
- Consider asking your local Social Services to assess your needs for any special aids or adaptations, such as installing a shower.
- Consider what safety precautions you may need to take, for example when cooking or bathing.
If you live alone, find out about the special alarms that are available to alert someone that you need help, either through your Social Services or privately.
If you are caring for someone else and feel you need support, or someone caring for you needs support, remember that help may be available.
- Organisations such as Carers UK can provide further information.
- More information on Safety and Daily Living is available from our online shop
Driving
A diagnosis of epilepsy means losing your driving licence for at least 12 months. This can be very hard to accept because for many people driving is the means to independence. Where driving is essential for work and there are no other options, it may be possible to receive practical help through the Jobcentre. Subsidised rail and bus fares may also be available.
Further information on driving and special transport schemes is available from the Epilepsy Action Online Shop
Disability Discrimination Act
This Act makes it unlawful to discriminate against someone because of their epilepsy in many areas of life, such as providing goods and services, education, and employment. It also requires reasonable adjustments to be made in these areas, where it would be of benefit for the person with epilepsy.
- A factsheet on the Disability Discrimination Act is available from our online shop
- Read more on the Disability Discrimination Act
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Twitter Updates
Epilepsy Action blog
Comments
I was diagnosed in my teens but not put on any treatment,was re-diagnosed again in 2006,but have vary bad experience with Nurologist,who even forgot to tell me to stop driving for a year!!! anyway besides that I noticed that I have loss of hearing in my left ear, this was the side where I would get my strong painful migrains.Is there a link with the epilepsy, the loss of hearing is now being investigated by ENT consultant.I would get de ja vou ,sickly,and room spinning feeling,the occaional blackout with no thrashing,very much linked to my menstrual cycle and my sleep pattern has always been affected too.No nurologist has explained what type of epilelsy i have.most of these symtoms are controlled since being on topamax.
Hi,
How are you doing with your epilesie? My brother had several epilepsie attacks over the 3 years and it usally started with a heave migraine attack. Do you think this has something to do with the epilesie? What do you advise us to do as the doctors are not able to find anything during the tests.
My 21 year old daughter which is 34 weeks pregnant just started having epilepsy.After her first attack of epilepsy,The neurologist did a cat scan and eeg and no signs of epilepsy showed up.Excactly 7 days later she had a second attack that happened during her sleep.This time the neurologist put her on Tegretol.They are sending her for a MRI next week to see if there isnt some other cause like a brain aneurisem because shes due to have her baby in about 5 weeks from now.My question is,if it is epilepsy,is it possible that its the pregnancy that caused it and have you ever heard of anybody having epilepsy only during their pregnancy and never having it again?And if so how can she be tested to know if this is the case and if she still must take her meds for life?Also is a C-section prefered or is there a risk for an attack if she goes through labour? Thank you Susie Grandy
Hello there.
The last three months have been really scary.
I am 45 years old i have had my first episodes of epilepsy, been hospitalised three times, bitten through my tongue each time and been prescribed Tegretol.
My memory has been severely effected and I am terrified of having another attack.
The first times I was told it was because I was drinking too much, so I stopped completely, but still had attacks, the Neurologist then decided it was down to disrupted sleep (I have five children, two of which are autistic so nights are often disturbed).
Does anyone find they have pins & needles, I seem to have it often in my hands & feet?
Elena your story is almost identical to mine. I exhibited signs in my teens but was only diagnosed a year ago at age 41 when the symptoms manifested into more severe fits and temporary personality changes. All extremely bizarre and very frightening!! For years I've had of deja vu, jamais vu, tingling face and arm, halucinations, painful migraines, extreme dizziness and occasional temporary loss of hearing or vision at one side. For years the ENTs told me it was related to my middle ear and nose and many years, ops, bits of ear missing and a crooked nose later and I still had the problems. The neurologist I saw for years was less than helpfull, very unsympathetic and aloof and did not diagnose me until I made the menstrual cycle connection myself and then spoonfed her information I had gleaned from the internet! She confirmed the diagnosis I had already reached myself and then berated me for having taken measures to help myself! I dropped her very quickly! As the trigger for my episodes is hormone spikes during my period days, part of my treatment is to have a progesterone based contraceptive injection (Depo Provera) every 12 weeks to keep my hormones at constant levels. I also took Topamax for a while but when I dropped the neurologist and started seeing a psychiatrist she changed my meds to Lamictal as in her opinion the side effects such as bad word recall were less. I haven't had a single episode since I started treatment and all of my symptoms have disappeared. The docs didn't tell me about the dizziness connection so I was pleasantly surprised when the meds took that away too. Also for years I've sometimes been painfully shy. Biggest surprise is that's gone too! I feel better than I have in 20 years!
Dear Fiona, I have pins and neddles in my hands and lips prior to a seizure. I to was diagnosed with NEAS two yars ago. I also bite my lips and tougue I think that's standard. I take no medication as hard to control epilepsy does not respond to medication I wish i did life would be easier if I could control it with drugs.
I have been having CBT for 1 year now and I now know the signs or 'Aura' so I get myself somewere safe and have the fit when I wake up I get myself to bed and sleep for 2-3 hours.
Fiona are you working? I was working full time as an internation credit controller but have been off work for two years. I do hope I can at some point get back to work as I think it is benefitial to your mental state to get out there and mix. Scarey as it sounds after going out two three times a week I now catch buses and meet people for coffee but only for 1 hour as I get very tired. It will get better. Hang in there Fiona.
Having suffered with epilepsy for twenty years and gone through the side effects of medication, I finally underwent surgery in April 1996, and from that day to this have remained seizure free ever since.
My advice to all epileptics is not just to sit there and suffer. If I could turn back the clock I would have gone about things in different ways and asked to be referred to an Epilepsy Specialist alot earlier.
With the way my life has now transformed, now that I am free from medication and enjoying life working in Seconday Schools on a full time basis, my message to all epilepsy sufferers in to never give up hope!
Colin
hi i was 17 months old when i was diagnosed with epilepsy i am 16 now an haven't had a seizure in a few years could i take one later on in life wen i am older?
My name is Shannon and I am 43 yrs old recently I was visiting my parents whom live 3 hrs away and while I was there. My Dad had left and went hunting about 3 hrs later he pulled in the driveway and walked into the house my mom met him at the door and my dad told her he didn't feel well she asked where he hurt and he said his left side of his chest he went into the bedroom to change and after a few minutes my mom went to check on him and found him gasping for air and stairing straight ahead with no emotion on his face his eyes were dark and glossy. He did not respond when she yelled his name. I grabbed my boyfriend and said help him and my boyfriend and my son went to his side and tilted his head back so his airway was open and kept saying breath george and my dad would gasp a gurglie sounding and gasp for air. And than nothing again this went on for what seemed like hours but was about 5 minutes in the mean time we had called 911 and the ambulance was on his way. They transported my dad into the ambulance where I saw them giving him CPR I was so scared and flustrated. At the hospital all my dads vitals came back normal and they could not figure out why this was happening so he was transported to a different hospital where a neourologist saw him after running all kinds of test my dad was never really diagnosed with anything but they beleive it was a seizure and gave him some seizure meds to try. My dad had one year left before he would retire at 65 he is a truck driver and now he cannot drive they say. I was so scared that day. And I just wanted to share my story. I wish my dad could have gotten to his retirement goal he has always been such a hard worker why does this have to happen.