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Some common seizure triggers

Some things make seizures more likely for some people with epilepsy. These are often called ‘triggers’. Triggers do not cause epilepsy itself, but they are things that make it more likely that you will have a seizure.

Not all people with epilepsy have seizure triggers. And, the things that trigger one person’s seizures might not affect other people with epilepsy in the same way.

Here are some of the seizure triggers that are commonly reported by people with epilepsy:

Not taking your epilepsy medicine as prescribed

Taking your epilepsy medicines regularly, as prescribed by your doctor, will help to keep a steady level of the medicine in your blood. Several studies have shown that if you miss a dose of your epilepsy medicines, the risk that you will have a seizure increases.

Feeling tired and not getting enough sleep

Feeling tired and not get enough sleep are two of the most common things that people with epilepsy say trigger their seizures.

Stress

It’s not known exactly why stress might trigger seizures. But many people with epilepsy say that if they are feeling stressed, they are more likely to have a seizure.

For some people, feeling stressed can lead to other behaviour, such as changing their sleeping or eating habits, drinking more alcohol, and feeling anxious or depressed. All of these can also increase the risk of having a seizure.

Epilepsy Action has more information about stress.

Alcohol

Several studies show that drinking small or modest amounts of alcohol does not increase the risk of having seizures. But if you have a history of alcohol abuse, even drinking small amounts could increase the number of seizures you have. This is also the case if you have had seizures related to drinking alcohol in the past.

Drinking more than modest amounts of alcohol in 24 hours can increase the risk of having seizures. For most people, the risk is highest when the alcohol is leaving their body after they have had a drink. This risk is highest between six and 48 hours after they have stopped drinking.

Epilepsy Action has more information about alcohol.

Flashing or flickering lights

Around three in 100 people with epilepsy have seizures which are triggered by flashing or flickering lights, or some patterns. This is called photosensitive epilepsy.

For people with photosensitive epilepsy, both natural and artificial light may trigger seizures. Some patterns, like stripes or checks, can also trigger seizures for some people with photosensitive epilepsy. The seizure(s) will usually happen at the time of, or shortly after, looking at the trigger.

Epilepsy Action has more information about photosensitive epilepsy.

Menstruation (periods)

Some women with epilepsy find that they are more likely to have seizures at certain times of their menstrual cycle (periods).

Epilepsy Action has more information about seizures and the menstrual cycle.

Missing meals

Some people with epilepsy say that if they skip meals, they are more likely to have a seizure.

What can I do to avoid my seizure triggers?

It’s a personal choice, but you might want to consider making some lifestyle changes. These include:

  • Remembering to always take your epilepsy medicine
  • Having a good sleep routine
  • Trying to reduce your stress
  • Limiting how much alcohol you drink
  • Avoiding flashing or flickering lights (if you have photosensitive epilepsy)
  • Talking to your doctor if your seizures follow a pattern connected to your menstrual cycle
  • Eating regular meals

Epilepsy Action’s booklet and web pages about epilepsy and wellbeing have more detailed information about lifestyle changes which could reduce your risk of seizures.

How can I recognise my triggers?

Keeping a seizure diary is a good way to try and find out what might trigger your seizures. Every time you have a seizure, record it and make a note of what you were doing and how you were feeling. If you do this over time, you might see a pattern emerging.

Epilepsy Action has more information about keeping a seizure diary.

If you would like to see this information with references, visit the Advice and Information references section of our website. See Seizure triggers.

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
Code: 
F095.02

Epilepsy Action would like to thank Lesley McCoy, Epilepsy Nurse Specialist, County Durham and Darlington NHS Foundation Trust, UK, for reviewing Epilepsy and travel abroad.

Lesley McCoy has no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated March 2014
    To be reviewed March 2017

Comments: read the 28 comments or add yours

Comments

Hi there,
My father in-law died in his sleep last Monday. He was 62 and diagnosed epileptic nearly 2years ago. He had 2-3 fits a year since 2010. We believe the onset begin because of a turbulent relationship with my brother in-law. My brother in-law is just very disrespectful and actually tried to physically fight his dad. He's a ticking timebomb and proud of it. He said some very hurtful things to my father in -law and his health begin its decline from that day on. Each time my brother in-law would come around, he would cause some type of commotion and the next day or soon after my father-in-law would have a fit. It got to the point, my father-in-law would lock himself in his home and not answer the phone to avoid any type of confrontation. He had a brain scan in August but never shared the diagnosis, he only began to discuss his funeral arrangements. Could the scan have revealed death was near?

It was so sudden we're just trying to wrap our minds around it.

Submitted by Tina on

Hi Tina

I’m really sorry to hear about the death of your father-in-law. I imagine it is possible that the scan could have given him information about a terminal illness. Starting his funeral arrangements does seem to point to that, doesn’t it? I wonder what the doctor said the cause of death was. You may get some clearer picture from that information.

It’s really natural that you are still feeling shocked by his death. I do hope your feelings start to ease over time.

Cherry

Advice and Information Team

Submitted by Cherry on

Hello; I am 67 yrs old. I have had epilepsy since 21 yrs old. I have been on all the meds there are and still uncontrolled totally. I still fall once a month every month and knock myself out and get hurt and I am very tired of that but the Dr's cannot help me.

Here are a few tips I have learned along the way for anyone new with epilepsy; Try to stay on decaf drinks, plus I have never drank alcohol all my life. Also try to stay off of chocolate. Go low on sugar. Here is a great tip--Watch out for the fullmoon---Every month when the fullmoon comes around or 5 days before the fullmoon, is when I have my fall or spell. I had a dentist tell me that as his daughter did also and it happens to me. It happened to 3 of us ladies within 3 blocks of each other last month. I have started staying at home, sitting or laying down during those 5 days and I did not have my fall this month. I also read that a child and a guy who had spells were allergic to carrots, celery,and wheat products and they quit them and stopped their attacks so I am trying to slow my eating those foods. Have your cellphone ring to remind you its time to take your meds so you are not late taking your meds and it keeps me taking them even if I am sleeping or taking a knap. So I hope these few tips will help--they sound silly but they really do help. Talk later. Wish everyone well.

Submitted by Luckie46 on

My daughter had a seizure 2 years ago. She drove fourteen hours in a car to vacation in Florida. She was on her period, was exhausted from pulling an all night exam. First night in Florida, had dinner, drank a couple of beers and went to bed. She work up in the middle of the night screaming. When she stopped screaming after about 2 minutes. She stared. People would talk to her and she didn't see them or hear them. It was like she was looking past them. We went to Vanderbilt in Tennessee. They ran all kinds of test on her and found nothing to be wrong. Well, one year later it is happening again. This only happens at night, while she is sleeping. Does this makes sense? She is under a lot of pressure at school. She is to graduate in December with a biology degree (if she can pass organic.) Her grandmother recently passed away. She says she doesn't have time to go to the doctors right now. She thinks this is something that she is going to have to live with. What advice would you give to me as her mother?

Submitted by Landa Elizondo on

Dear Landa

Everyone has a seizure threshold. And there are some triggers which can lower this. It sounds possible that your daughter’s seizure threshold gets lower when she doesn’t get enough sleep, or she is very stressed.

So it would be a really good idea for her to get a diagnosis. There are two reasons why I suggest this.

She will need to know if there is a reason why she is having these seizures. Often there isn’t, but if there is, it is much better to know about it.

And she will need to be advised about driving rules. I am assuming she is still in the US. So she may want to be in touch with the Epilepsy Foundation.

In the UK if she didn’t stop driving, apart from the huge risk to herself and anyone else on the road, she would be breaking the law, and would have no insurance cover.

And here is our information about sleep seizures.

I hope this information is useful for you. And that it will be enough to persuade your daughter to prioritise seeing the doctor.

Cherry

Advice and Information Team

Submitted by Cherry on

My son aged 16 years had his first ever fit two weeks ago will standing at the bus stop. He feel flat on his face and had a fit which lasted a couple of minutes. I'm very thankful for the gentleman who called the ambulance which took my son to the hospital. Other than cuts on his face all the tests (CT scan, chest x-rays and blood tests) came back normal. He has been put on the waiting list to see someone at the First Seizure/Fit Clinic however they have a 4 month waiting list. Unfortunately as he is doing a joinery course at college and works with machinery, etc. the college have asked for a medically fit letter which obviously I am unable to obtain though totally understand their request. I have subsequently made an appointment with a private doctor (was rather shocked at the £180 consultation fee but would give my last penny of course considering it's my son's health) but first appointment available is the 16th December. Do you think any doctor would give a medically fit letter or does one have to wait until a full year to see if he has another fit before he's declared medically fit? If I am unable to provide a medically fit letter the college have advised that my son my have to postpone his course.

Any advice or feedback would be greatly appreciated.

Donna

Submitted by Donna on

Hi Donna

That sounds like a very long time to wait for a first seizure appointment. The NICE guidelines say ideally you should only wait 2 weeks! So it may be worth your son's while to contact his family doctor to see if they can hurry the appointment up for him.

I feel there are two parts to your question. So first I will give you some information about diagnosis and treatment of epilepsy. Then I will explain a little about the college and your son's course.

One in twenty people in the UK has a single seizure in their lives. Epilepsy is defined as having recurrent seizures. So it may be too early to say whether your son has epilepsy or not. The doctor will need to collect a range of information, including the witness report, in order to make a diagnosis.

If your son was of driving age (and driving) , it would be necessary for him to stop driving for at least six months while the investigations took place. I am telling you this because no doctor, NHS or private, would be in a position to say your son was physically fit during these six months.

However, the doctor is likely to have tests done which will give them more information with which to make a diagnosis. And if they feel your son does have epilepsy, then they may suggest he starts taking epilepsy treatment. Once on the right dose of the right epilepsy medicine, this could mean it was much less likely that he would have seizures in future.

Because your son has had a seizure, the college needs to do a risk assessment for him. I have linked you to our risk assessment information for employment, but the same questions are useful whatever the context. As you can see, getting the answers to these questions would include collecting information on whether your son had a warning before his seizure and how long his recovery time was. The problem with the risk assessment being so soon after a first seizure, is that because so little is known, the level of risk is likely to be assessed as high.

So it may well be that the college will decide it will not be safe for your son to use electrical equipment until there is the possibility that he is seizure-free. I can see why they may suggest to your son postponing his course. In a year's time it would be much easier to have an accurate risk assessment. And it may even be that there is no risk at all by then.

This feels like it might be quite a lot to take in. If you or your son feel it would be easier to talk to someone on our epilepsy freephone helpline 0808 800 5050, you are very welcome to ring us.

Cherry

Advice and Information Team

Submitted by JohnA on

Thank you Cherry for the reply.

It's unfortunate that there is such a long waiting list for the first fit clinic but as I mentioned I have gone ahead and booked him in for an appointment with a private doctor (1st available appointment on 16th Dec).

He hasn't started driving yet but was hoping to start in the next month or so when he turns 17 but obviously that's going to have to wait.

I will have a chat to the college about the risk assessment and we'll take it from there I guess.

Again thanks for the reply.

All the best
Donna

Submitted by Donna on

Hello,

I was a sufferer of Langerhans Cell Histiocytosis as a child, and was cleared at the age of 12. I am now 19 years old and have recently been diagnosed with Epilepsy.
I was wondering whether there has been any correlation found between LCH and Epilepsy?

Thank you.

Submitted by Arabella Leonard on

Hi Arabella

We aren’t aware of anything linking LCH and epilepsy. But we aren’t medical people. So it might be worth asking your neurologist their professional opinion.

Cherry

Advice and information Team

Submitted by Cherry on

Hello,

I've had from seizures for most of my life. I suffered from a severe TBI when I was 3. My seizures stopped when I was 6 until about four years ago and since then they are increasing in frequency. I had the hardest time getting diagnosed, because they are so short, and difficult to prove. Only my mom even knows when I have them. I believe my doctor called them absence seizures. I'm supposed to go in for an EEG soon and I'm worried they won't be able to find out anything because lights have no effect on me. And so far the doctors have been unable to actually trigger one. Is it possible for sound to trigger them though? I've always been really sensitive to noises (not just loud) and my pre-seizure symptoms usually show up when I'm exposed to some sounds. Sometimes not even going beyond the pre-seizure symptoms, but its happened so much I can tell its the same feeling I get before I have a full seizure (and lose time). So can sound trigger seizures or is this likely some other problem?

Submitted by Jessica on

Hi Jessica

It’s possible for sound to be a trigger, but it’s not a common trigger.

Try not to worry too much about your EEG. Many people with epilepsy have a clear EEG. But the results of an EEG may help doctors when they are making your diagnosis. If you haven’t already, you could make the doctor aware of your concern about sound. If necessary, they may arrange something for when you have your EEG done.

I hope all goes well. If we can be of any more help, please feel free to contact us again, either by email helpline@epilepsy.org.uk or , if you're in the UK,  on the Epilepsy Helpline freephone 0808 800 5050.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

My son in law aged 35 works a physical job. He has had seizures since was sixteen. He takes six hundred mg dilantin per day. He has no appetite and seems to sleep whenever he is not working. He drinks energy drinks sometimes two per day but still has no energy admit thoughts?

Submitted by laura on

Hi Laura

We’re trained epilepsy advisers but we’re not medically qualified. This means we can’t diagnose or suggest treatment for your son-in-law. It would be advisable for him to talk to his family doctor. There could be various reasons for his lack of appetite and tiredness.

He may wish to discuss the dosage of his Dilantin. In the UK, it’s unusual to be prescribed more the around 400mg of phenyton (Dilantin) daily. If someone is on too higher dosage of phenyton (Dilantin) they can experience dose related side-effects such as no appetite and tiredness.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

I wanted to know if anyone has experience the same as me. I have had epilepsy since I was 5 but been fit free for 14 year. I came off medication 8 years ago and no seizures. In addition I alway knew when a seizure was coming I was ill all day. This week while driving home in the fast lane of the m62 I had a very strong Ora and knew I had to get to safety. I managed to stay conscious and get off the motorway. The last thing I remember was existing the m60 and fri there it's fuzzy. I came to some 5 miles from the motorway I had driven my car across several busy junction made right turns and traveled to my old house. I don't remember this but I'm waiting to see a neurologist for diagnoses. When I stop the car I entered pass codes into I phone found my sister number and called for help as I couldn't remember where I lived. I'm finding it hard to understand what happened as it can't be a seizure having driven my car. Has anyone else experienced simlar?

Submitted by Adele on

Hi Adele

I can imagine what a distressing experience this was for you.

It’s possible that you were having epileptic activity, but there could be other reasons why you had the symptoms. You really need to talk to a doctor about what happened, so they can investigate all the possible reasons.

Best wishes
Amanda
Epilepsy Action Advice and Information Team

Submitted by Amanda@Epilepsy... on

Ok everybody, first off as im typing this im feeling symptoms of having a seizure. I am 16. Ihad seizures when i was a little kid, but just twitches. Dey stoped at 6yrs old. Back in 2012, ihad one in my room in march, then i woke up in the hospital and stayed deir ithink for 2 nights. Then the next month i had another one. THEN the month after, and it was at school. After that i think ididnt have any til later in the winter. Idid take my medicine . 2013 Came and ihad one on january first then went to the hospital. The month after i had another one, then the month after again in march of 2013. Then i refused to take my medicine because ididnt like how they made me feel. They made me feel like their the reason why i kept having them. Then the summer came and i had a few more seizures. I refused to go to treatment because ididnt want to stay in the hospital for another time because nothing seemed to work. After the summer of 2013, i havent had a seizure during the day but only in the middle of the night when i tossed nd turned, but the next morning ididnt know if it was just a dream til it happened a couple more times.My parents know but now my doctor refuses to see me because i havent gone to him for over a year. Just last week islept over my friends house and ihad one while i tossed and turned nd iwoke up in the morning and my friend and his sister asked if i was ok and they were scared. Im tired of having seizures. Im tired of my mom crying when she sees me have one and my little siblings too. And im tired of not being able to prevent them even wen i do drink my medicine.I want them to stop! Idont want to end up dying because of seizures.Currently its been more then a year since ive seen a doctor. My friends dont want to hangout with me because their scared of me having one. If i estimate the number of seizures i had, it wuld be about 20-25. Im not exagerating. I scratch my wall every time i had one and have 22 scratches but i forgot to scratch a couple times from some past seizures. Please ilive in the U.S Aurora, il . Iwant some help. Iwant them to stop. Im desperate!

Submitted by jaime ponce on

Dear Jaime

Thank you for your questions.

As you live in America you may wish to contact the America Epilepsy Foundation. They should be able to explain your rights to see a doctor and what epilepsy medicines are available for you.

Like most drugs, epilepsy medicine can cause side-effects. The risk that you will have side-effects depends on a number of things, including which epilepsy medicine you take and any other medicines you take.

There is more risk that you will get side-effects in the early days of taking an epilepsy medicine. But once your body has had a few days or weeks to get used to the medicine, these side-effects should lessen or disappear completely. If they don’t, talk to your doctor. You may wish to view our information on epilepsy and treatment, but remember our information is relevant to the UK. It may be different in America.

It can be difficult to accept epilepsy, especially when you are having so many seizures. We find many people in this situation find it helpful to talk or contact people who understand what they are experiencing. We have various ways for people to do this. We have are on facebook, twitter and we have our forum4e online community, which is accessable to anyone outside the UK.

I hope you are able to get the medical support you need.

Regards

Diane

Advice and Information Team

Submitted by Diane on

Hello ;-)
I've had epilepsy since age 14 and am now 22.Its hectic and very depressing.I got seizure today.Usually for me before seizure I become frequently ubsent minded then I collapse.I take Keppra and Lamotrigine.What depresses me more is about pregnancy complications.I like most females would like to have child of my own and sometimes I ask myself will I ever find myself a husband.God knows.In God I trust.

Submitted by Fatma on

My Son Who is 10years old has been diagnosed with child hood Absent epilepsy. He has been taking medication for 8 weeks now. It had altered his mood where he felt sad, can't be bothered, angry and frustrated. Can the medication be to much, as when reduced i felt i had my son back.he was happy and adventurous once more. And seem to only have the odd absent seizure.

Submitted by Lynn on

Hi Lynn

It is possible that his mood has altered because of his epilepsy medicine. I am guessing the dose has been raised gradually.

So it may still take a little while for his body to get used to the latest dose. If he continues to be out of sorts, then it would certainly be a good idea to talk to the specialist.

There are various options for the doctor to suggest. They could increase the dose more slowly, they could reduce the dose, they could try a different epilepsy medicine.

The important thing is not to change the way your son is taking the medicine until you have talked to a nurse or doctor about it.

Best wishes

Cherry

Advice and Information Team

Submitted by Cherry on

Hi everyone,
Just having read a few of the pieces I thought I should add my own just to let people living with epilepsy know they are not alone!
My seizures started around 5 years ago in my early thirties. Initially it was simply a case of losing my breath a bit and perhaps a bit of spit building up. I just put this down to me being overweight and my doctor also put it down to stress and an unhealthy lifestyle.
The small seizures continued maybe two or three times a week working in a stressful environment and with a my wife giving birth to a child. About 2 years ago I had a full seizure at work ending up in hospital and that is when doctors diagnosed me with epilepsy. I have been slowly building up on medication although still have the occasional full seizure - very few partial/minor seizures though!
The main point I wanted to put across for those suffering with seizures is that you are not alone! I know how depressing it can be to know that you cannot even drive and at the back of your mind worry the effect your epilepsy can have on others plus the way it can limit your lifestyle (hey, I wasn't ever planning to climb Mount Kilimanjaro anyway!).
All I can say is try to keep your chin up. People on here know what you are going through. My advice is do not use the pills as a shield but work with them. If you are tired, take a break. If you need some time alone, do so. If you are feeling better, make the most of it! People will understand and don't let pride get in the way of your health. I am still coming to terms with it all but am philosophical too - missing alcohol isn't the end of the world and ultimately as we grow older we need to take life more easily and plan for our middle to late years.

Submitted by Adam on

Im 23 years old, ive been having seizures since i was 13. The doctors here in the states cant figure out why i have them, and for some reason cant even find much abnormal brain activity. I have been on many different types of medications. And last year i started having seizures during the day. Before it was only while i slept i have never had a problem loseing urine or bowels. The last one was less than a month ago. I have read a few posts on here even though older there are a few things i would like to answer. There was a girl on here asking about her friend and how she should act toward him because he had a fit at school. Dont act differently just learn the basics in case it happens when your there. I was severly ridiculed in school for having them " freak" seemed to be the choice word. But anyways if anyone has any ideas of what i could ask my neurologist when i go in next that would be great! Or if you know someone who has the same thing going on? Just please help. Im so tired of this.

Submitted by lauren on

Hi Lauren

It must be difficult living with uncontrolled epilepsy and the cruel way some people react to it.

If you haven’t already, for general information on diagnosis and treatment you may wish to view our information. However, please remember our information is relevant for healthcare in the UK only. It may be different in America. For this reason you may wish to contact the Epilepsy Foundation in America.   

If you’d like to contact others we have our online community forum4e. This is for people with epilepsy and carers of people with epilepsy.  The forum allows people for around the world to discuss anything and everything with other people who have epilepsy. It has a forum with areas to discuss subjects such as medication, seizures and so on, and share experiences. https://forum.epilepsy.org.uk/

Regards

Diane

Advice and Information Team

Submitted by JohnA on

I was clear of epilepsy for 17 years. I had petit mal fits from the age of 8 until I was 16 when they developed into grand mal. I had a seizure in August 2012 and went back on Sodium Valporate and had to surrender my driving licence. Even though I had taken this medication previously, I developed bruises and I was prescribed Lamictal. On 6th June 2013, after being 10 months seizure clear, I had another one. On 6th June this year
I was a year clear and I reapplied for my driving licence on June 9th. On June 14th I had another seizure whilst out shopping. I have noticed that recently I have been very tired, I find it hard to wake up in the morning, my eyes become blurry and I get double vision (this used to be my warnings for my fits but my consultant dismisses this and says it is not significant), I also get hot and sweat a lot but this has been put down to the fact that I have gone through the menopause (I am 50). On the day of the fit I was very confused and couldn't get my words out properly. I can't understand why my fits have returned and why they seem to be happening once a year at the same time of the year. I have requested another MRI scan just in case they missed something but have been told I can't have one as they did one last year. Would a CT scan be more detailed. I need answers because I want my life back.

Submitted by Kate Jones on

Hi Kate

It sounds like you have been going through a hard time.

It is strange that you have your seizures on just about a yearly basis. But I have spoken to a number of other people who experience something similar. I’m afraid I have no explanation of that for you.

A CT scan is less detailed than an MRI scan so it wouldn’t give you extra information.

We are not medically trained. But I do have a few suggestions of things that could be contributing to your current ill health.

Have you had any change in the level of your epilepsy medicine? Some people can experience tiredness and double vision if they have too much of their epilepsy medicine in their system at any one time. This could be related to the time of day you take your medicine. For example if you take two doses and one dose is much less than 12 hours after the other, this may give too high a concentration of the medicine in your system at that time.

Another explanation could be if you have gained or lost a considerable amount of weight. That again would alter how much Lamictal you had in your system at any time.

If you think any of this is relevant to you, I suggest talking to your GP about it.

I understand you’re taking Lamictal just now. Has your medicine changed from the branded Lamictal to the generic lamotrigine at any point? Or have you been given a type of Lamictal that has been made outside the UK? For some people these types of medicine changes can cause breakthrough seizures.

Do you think you may be having sleep seizures? These could possibly explain why you feel so tired in the mornings.

Also you might want to look at some of the symptoms people can experience with various types of focal seizures. And if you feel any of them sound similar to your experience you may want to try that conversation with your neurologist again.

Menopause can sometimes have an effect on seizure control. But often there is no explanation for why people’s seizures return after some years.

We have an 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.

I do hope this information is useful for you, in getting some understanding of what is happening for you and why. And that things improve for you soon.

Cherry

Advice and Information Team

Submitted by Cherry on

I have never had a generalised seizure but have had 'absences', which I now know are partial seizures in the temporal lobe, two to three times a day since childhood. I am fifty four years old and was diagnosed in October 2014. I thought I was suffering psychosis as a result of drugs I had been given for cancer but the oncologist sent me to see a neurologist and she diagnosed epilepsy. I also have (fairly mild) athetoid type cerebral palsy, which was diagnosed when I was eight and had PTSD around the same time.

I was given Kepra because most other drugs interfere with the cancer drugs, but I stopped taking them because they made me suicidal (I've been chronically depressed most of my life but never suicidal) and as soon as I stopped taking them, the suicidal ideation went away.

I'm cancer free now but I don't know how to deal with the realisation that this could have been under control by now, and perhaps if it had been, I might have been more in control of my life. So, I have two questions.

1) After half a century of seizures, is there any point in trying to treat it now? I had a boss who was diagnosed twenty years ago and the seizures still aren't under control. So, do the risks of the medicines themselves not outway the risks of temporal lobe seizures themselves.

2) How do I deal with the mental health problems and the anger? I was discharged from psychiatric care and told that my anger was justified, I was not psychotic nor depressed at this time, and while I had some issues around memory and identity, they were probably caused by the epilepsy and a psychiatist could not help me. I feel abandoned.

Submitted by Alcuin Edwards on

Dear Alcuin

Firstly congratulations on being cancer free. That is such an achievement.

It can be a difficult time when you have to make the decision of whether to take epilepsy medication or not. We cannot say whether you should or shouldn’t but we can covered some issues that are advisable to consider when making your decision.

Most people take epilepsy medicine to control their condition. Here is a link to how epilepsy is managed with epilepsy medicine. 

If you are no longer taking cancer drugs will more epilepsy medicines be available for you? If you are still taking cancer drugs, are any of the newer epilepsy medicine suitable?

If epilepsy medicine isn’t an option, is any other type of treatment an option?

If you choose not to start on medication, there is no research to suggest your epilepsy would become worse because of this. There are in fact many people who choose not to take medication, especially when their seizures are very infrequent. This may also be the case when their seizures only happen in their sleep.

Many people with epilepsy taking medication means they lead a normal lifestyle. Around 70 per cent of people with epilepsy have their seizures controlled with epilepsy treatment.

Ongoing activity (seizure) could affect a person’s daily activity.

Seizures also run the risk of injury and there is a low risk of dying because of epilepsy. This could be due to an injury or Sudden Unexplained Death in Epilepsy (SUDEP). I have given you this information not to scare you but to make you aware of possible complications with uncontrolled epilepsy.

If your behaviour, moods and memory problems are caused by your epilepsy, the only way to stop these problems, is to stop the epileptic activity that is causing them. An epilepsy specialist could explore this with you.

I hope this will help you with your decision. 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
Epilepsy Action Advice and Information Team

Submitted by Diane@Epilepsy ... on

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