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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

These are some 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

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 52 comments or add yours

Comments

i have 3 fit's this year and i get stare fits were i can sit and stare and blank out for minutes and it totaly blocks everything out and no one can communicate with me or get me out of the trance, ive just recently had 3 big fits in one day and had to be taken into hospital i have not yet been diagnosed and its getting really stressful not knowing when my next fit is going to be it puts me down to know i carnt do most things on my own and i dont have a life iam going for an MRI and EEG because i constanly feel tired and i get very ill for a few days at a time and my vision goes very blury. i also find wen i worry alot i get the staring fits

Submitted by kirsty on

Hi

I’m sorry to hear of your situation. It must be a very worrying time for you. I hope since you did this posting, the hospital have diagnosed what is happening. If they have diagnosed epilepsy and you would like more information on living with the condition, please either by email us at helpline@epilepsy.org.uk or phone the Epilepsy Helpline freephone 0808 800 5050. We will do our best to answer your question or help with any concerns you have.

Best wishes

Diane
Advice and Information Team

Submitted by Diane@Epilepsy ... on

Hi
I've had epilepsy since i was 13 and I'm now 28, but I've only ever had seizures in my sleep (tonic-clonic). I am aware that I am mildly photosensitive and I've got quite good at avoiding triggers and in the last few years I've only had seizures once or twice in a year although i've not been taking medication for the last 2 years. I recently started a residential college course and and there's a fire alarm in every room that is very loud with a red flashing light. A couple of weeks ago the fire alarm went off in the night, I got up but was physically shaking involuntarily (I couldn't control it) but i didn't lose consciousness, one of my friends managed to drag me outside (she was a bit freaked out by the shaking), it was a false alarm, we came back inside and went back to bed and then I had a relatively strong seizure before morning. My friend who had witnessed the shaking was convinced it was caused by the fire alarm but i kind of laughed it off. Then last night the fire alarm went off in the night again. I had the same reaction of uncontrollable shaking and I was afraid to go back to sleep afterwards in case of having another fit so i stayed awake for a while and tried to do deep breathing and concentrate on relaxing. After a while (don't really know how long) the shaking wore off and i went back to sleep and slept until morning with no fit. So now I am wondering... is the uncontrollable shaking when the fire alarm goes off likely to be related to having seizures or just some kind of other weird reaction to being woken up in the night by a loud noise and flashing light? Is it likely that the seizure a couple of weeks back was triggered by the fire alarm at all or is that ridiculous? Anyone else experienced something like that?

Submitted by Jenny on

Hi Jenny

Certainly you are having some kind of reaction to the fire alarm, aren’t you.
There is a thing called a startle reflex, which can feature in epilepsy. But I’m not really sure from what you describe whether the shaking would be epileptic activity. And the seizure you had wouldn’t be related to photosensitivity. This is because it did not occur within a few minutes of the ‘trigger’.

The first seizure could be the result of sleep deprivation, having been woken in the night. But it doesn’t particularly explain why you didn’t have a seizure the second time.

So I’m afraid I’ve not really been able to answer your question. If you have an epilepsy nurse, it’s always worth asking them. Or I wonder if you know about our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. Asking the question on there may get you a more useful response. Sorry not to be more help.

Cherry
Advice and Information team

More

Submitted by Cherry@Epilepsy... on

My 30 year old daughter died in her sleep, she has had seizures since she was 7, I'm trying to understand, her seizure was mild twice a year, when I found her she was laying side ways, eyes shut and mouth close, very peaceful, ME report was Natural Cause, their was no seizure but because of her history, they call it Sudden Death Syndrome Epilepsy, is that true? Why couldn't I have safe my daughter, I didn't hear anything during the night, I feel I failed my Michelle, she was a special child, but Michelle was smart and independent lady, she died too young!

Submitted by yolanda ayala on

Hi i am 31 and 4 yrs ago had my first gral mal seizure whilst away on Holiday the first night we got there i took 4 seizures within 2 hrs and ended up in hospital for 3 days when i got home went to see specialist and was told i had slight activity on my right frontal lobe few weeks later i got pregnante with my second child so stopped taking the tegrotol to be honest we where all putting it down to dehydration as to why i had fitted so after i had my daughter i never started the tablets again ......so u can imagine how shocked i was when i woke up in hospital last week i had been out with my friend in the morning then got a really bad headache and felt sick so went home and put myself in bed about two thinking i had this bug which was going round from then i dont remember nothing but my husband come home from work at five come upto room at half five turned the light on to find me having a fit in bed but had already had one as there was blood all over pillow and i had wet myself he rang an amblance and from when they got here till half eight i had six more seizures gral mal through one of these fits i went blue and had to be put on oxygen i was took to hospital and the first i remember was waking up two days later with a toungue cut to pieces covered in brusies and felt like i had been in the gym for a full day my whole body was that sore ...... I am going to see the nuro specialist next week but so scared i got two Young children i on tablets now so fingers crossed these will control Any more fits anyone else Any advice

Submitted by danielle on

Hi Danielle

I hope you have now made a full recovery from your recent seizures. I can only imagine what a shock your recent seizures must have been for you and your husband. Hopefully your epilepsy medicine will help to control your seizures.  

To help with your worries of seeing the neurologist, I wondered if you may find it helpful to view our webpages on visiting your doctor and diagnosing epilepsy. The visiting your doctor webpage is a guide to questions you may wish to ask the neurologist.  

I hope all goes well.

If we can be of further help, please feel free to contact the helpline team directly.

Diane
Advice and Information Team

Submitted by Diane@Epilepsy ... on

I have a 16yr old niece who collapses on average twice a week (now has a medical band) and is unconcious for anything to one minute to 20.After lots of trips to a&e as she still doesn't have an answer. They say it's not epilepsy as she has never wee`d herself. Is that true?

Submitted by Melanie on

Hi Melanie

There are a number of medical conditions that can cause symptoms similar to epilepsy. This can make epilepsy difficult to diagnose.

An epilepsy specialist will make a diagnosis based mainly on a person’s symptoms. The epilepsy specialist may do some tests at the hospital.. None of these tests can prove that someone does or does not have epilepsy, but they may give useful information. Whilst it is possible that someone could lose bladder and bowel control during a tonic clonic seizure, this would not be used as a way to diagnose epilepsy.

Vicky
Epilepsy Action advice & information officer

Submitted by Vicky@Epilepsy ... on

Our daughter, now thirtyfive, has had siezures on &off since birth.We use homeopathic rescue remedy under her tongue or in mouth/lips .Brings her out of it almost immediately.Sometimes one lot of6to 10 drops other times up to four.No after effects Or side effects.Bang bottle down on eg book afew times before use.Worth a try, good luck! Barry

Submitted by BARRY KELSEY on

My daughter, 50, has from childhood been epileptic, but for many years free of fits through medication. She avoids flickering lights. She recently fitted while using an electric lawn mower. Is there a possibility that using electrical machines could trigger a fit?

Submitted by Peter Wilson on

Hi

 

We have never heard of anyone having seizures triggered by electric lawn mowers and we can’t see a reason why they would be a trigger. Triggers of seizures can vary greatly. However, the trigger doesn’t have to be immediately before the seizure happened. Sometimes, for example,  a seizure can happen if someone hasn’t been sleeping well for a few days. We have some information about [triggers] on our website. http://www.epilepsy.org.uk/info/triggers

 

Some people don’t have any triggers and their seizures happen for no obvious reason. Your daughter might find it helpful to keep a diary. She can log when she has seizures and information about what happened as far back as a day or two before the seizures. This might help her to identify anything in common, that could be a trigger.

 

I hope this helps.

Rosanna

Advice and Information Team

Submitted by Rosanna@Epileps... on

Hi, any advice can help. My friends daughter had fits when she was a baby. Has been weaned off medication. She is now 12 in January she started having black outs. Where she was awake but not responding. These lasting 2-5 mins. She didn't have any for 3-4 weeks. The last Tuesday she told my daughter she had a headache and felt dizzy so my daughter laid her down she went like she was asleep. Came out of it when I got to her. She then went to sleep as she was tired. Friday she did the same but was none responsive for six mins. Ambulance called. Today happened again same thing ambulance called. Came back from hospital 5 hours later another short one ambulance not called. Going back to consultant on Thursday. Has been to docs and hospital so waiting for results. My friend is frantic and needs some advice she carnt wait for Thursday to come. Thank you in advance

Submitted by Micky on

I'm 15 and a friend of mine suffers from epilepsy and 2 years ago he suffered his first fit at school. Recently he suffered another, and I was just wondering, what is the best way to act towards him when you see him, just assume normal day to day behaviour? Or be compassionate?

Submitted by James on

Hi James

A good question. My feeling is that genuine care and understanding are probably the most helpful. Your friend may well feel it’s very difficult for him to talk about it. So if he knows that you are happy to do that with him, if he wants to, that could be a real help. Main thing is for him to know that you’re there for him, and then just to check with him if there is anything in particular he wants you to do or not do. Apart from that, normal behaviour sounds a pretty good idea!

Submitted by Cherry@Epilepsy... on

Hello i had a few fainting spells when i was younger and also remember having a migrange after heading a leather football with sunglasses on my head, and waking up once in the night on the floor. I was pushed down a canal and smashed my head last year and had a seizure a couple of months later. Then a few months ago i had 2 small 1s lasting ten seconds but nothing since. I get a dejavu feeling and its like i have been dropped into my past or into my thoughts kind of like a dream. I have a slightly thick layer of white cells on my left hippocampus am waiting for my results from the eeg which i get monday 17th june 2013. Does this sound like epilepsy? And has any one had the same experience with the abnormal hippocampus cells? Bit worried as grandad had schitzophrenia and i have done tests for bipolar and it says im bipolar 1 . And also adhd which is high chance. Pls help if possible thank you all

Submitted by Charlie goodwin on

Hello Charlie

Some of the symptoms you mention, such as having seizures and feelings of déjà vu, may be symptoms of epilepsy. You also mention that you have a slightly thick layer of cells on your hippocampus. It is possible that any kind of damage or scarring in the brain can cause epilepsy.

We can’t tell you if you have epilepsy or not. By now, you may have spoken to your doctor, so I hope they were able to give you some of the answers you are looking for.

If we can help you with any more information about epilepsy, please feel free to contact us again on the Epilepsy Helpline, freephone: 0808 800 5050, or send an email to helpline@epilepsy.org.uk

Amanda

Advice and Information Services Officer

Submitted by amanda on

Hello again

I have just been diagnosed with focal epilepsy the e.e.g showed some sharp wave activities and slow in the left aneterior and occasional frontotemporal region does any 1 know what thay mean!!??? because I haven't got a clue really. They started me on keppra 250 in the morning to be increased in 2 weeks to 250 in morning and 250 in evening. My concentration is terrible and some times feel like my eyes just wanna shut. It seems to be making my chest go into panic mode a bit and I can almost think myself into a sort of frenzied state of mind that I instantly snap out of once I realise and I stop zone in out. But on the up side me head ache goes away for a few hours a day!! Lol.

Thank you for replying hope to hear again soon

Submitted by charlie goodwin on

Hi Charlie

I can’t tell you what the EEG results mean, other that it’s saying you are having some kind of seizure activity in two parts of your brain. Your family doctor or epilepsy nurse may be able to tell you more.

It’s good that your symptoms are now being treated, although it can take a while for your body to get used to the epilepsy medicines. Drowsiness, dizziness, anxiety and concentration problems are listed as possible side-effects of Keppra but if they don’t settle soon, mention it to your doctor or epilepsy nurse. They may look at adjusting your dose.

It’s good that your headaches have gone away. That must be a relief for you.

If you would like to speak to other people who take Keppra, you could join our on-line community forum4e: www.forum4e.com. There are several thousand members, so it’s likely there will be a number of people who can tell you of their experience with this medicine.

Kathy

Advice and Information Team

 

Submitted by Kathy on

I've recently met a lady, who tells me she is on medication for epilepsy. She doesn't have fits but passes out apparently. Can you tell me if the medication is missed for maybe one dose, does this cause anxiety and moodiness?

Submitted by Christine Holcombe on

Hi Christine

If anxiety and moodiness are part of her seizures, then missing her medicine could cause these symptoms. Here is some information about all the different types of epileptic seizures.

Kathy

Advice and Information Team

Submitted by Kathy on

Hi, I have recently moved t UK, and had seizure last week, Before that I had seizure only 3-4 times in last 5 years. Wanted to know the best way to look for the treatment for Epilipsey in UK. I usually get seizure only when I hav short sleep for 2-3 hrs. Else I haven't got seizure in any other condition. I think mine is not a serious case, but need your guys help to cure my self as soon as possible.

Submitted by Rakesh Singh on

Hi Rakesh

To get treatment for epilepsy in the UK, you will first need to see a GP (family doctor). You can find more information about GP services and how to register with one on the NHS Choices website.

When you see the GP, they will usually arrange for you to have an appointment with a neurologist at a hospital. The neurologist will ask you about your epilepsy and may carry out some tests. They will then advise you on the best course of treatment. There is more information about the treatment of epilepsy on our website.

You may find it helpful to know that many people with epilepsy report that if they are feeling tired or have not had enough sleep, they are more at risk of having a seizure. So, it’s a good idea for people with epilepsy to aim to get a good night’s sleep, wherever possible.

I hope this helps.

Amanda

Advice and Information Team

Submitted by amanda on

hi my 21 yr old son seems to have fits when he overheats just recently because of hot weather he has tried leaving a fan on this has helped but he wakes up some times bathed in sweat and of course begins to panic so takes half a larazapam which 98% works is there anything else i could try to help him as he wakes me up in a panic and we both end up tired the next day any ideas gratefully received he is on 500 kepra twice daily he has had two fits over 7 months and only lasted 2-3mins tonic clonic seizures i had hoped he might grow out of this as his dad did?

Submitted by sue hughes on

Hi Sue

It sounds like your son is really anxious about the hot weather triggering a seizure. Has he talked through his anxieties with his family doctor or epilepsy nurse? They may be able to talk things through with him and suggest ways to help.  It might also help your son to know that there is no evidence to suggest that hot weather makes seizures more likely.  

Everybody’s epilepsy is different .What might have been the case for your son’s dad may not necessarily be the same for your son.

You may be interested in our information about epilepsy and inheritance:  http://www.epilepsy.org.uk/info/inheriting-epilepsy

If we can be of any more help please feel free to contact us again either by email or the epilepsy helpline freephone number 0808 800 5050

Vicky Morris

Advice & Information Team

Submitted by Vicky on

Hi

I was diagnosed with epilepsy a month before I started Uni in September 2010 when I had 2 seizures one after the other and put on Sodium Valporate. For that year all was fine and I had no more until May 2011 when I had one in my local supermarket and ended up with 2 brain haemorrhages and since then I've had seizures at least once a month and am now currently on my 4th medication after having tried Leviteracetam, Lamotrigine, Valporate and now Zonisamide. I have also tried giving up alcohol, a ketogenic diet but nothing seems to work. I can't shower without telling someone, cook by myself, straighten my hair, really be in the house by myself in case I have one so it's difficult to know what to do next. I have injured myself so many times and have had to have skin grafts for burns previously due to injuries sustained. I have absolutely no trigger, no warning and have grand mal, petit mal and absence seizures. I applied for DLA but wasn't successful and am still having fits. What's my next move? I am sick of it all!

Martha

Submitted by Martha Roser on

Hi Martha

You haven’t had a very good time of it, have you? I do hope the information below will help.

It must be frustrating not having control of your seizures after around three years. Because your seizures seem to be difficult to control it might help you to know about the National Institute for Health and Care Excellence (NICE) guidelines. NICE can give you a guide to what NHS treatment you might expect if you live in  England, Northern Ireland or Wales. Information about [epilepsy and the NICE guidelines] are on our website. http://www.epilepsy.org.uk/info/treatment/nice-guideline If you scroll down this web page and go to the section called difficult to control epilepsy, it would appear that some of this applies to you. So you might be able to get a referral to a team of highly trained healthcare professionals in a specialist centre. If you aren’t already going to a specialist centre, you could ask your GP or current specialist if a referral is possible.

However, if you live in Scotland you could look at the [SIGN guidelines]. http://www.sign.ac.uk/pdf/sign70.pdf On page nine, section 3.3 this discusses management of drug resistant epilepsy. Again, you could talk to your GP or current specialist about SIGN.

You mentioned that you were refused Disability Living Allowance (DLA). In some areas of the UK DLA has now changed to Personal Independence Payment (PIP). Our website has some general information on DLA and PIP. http://www.epilepsy.org.uk/info/benefits If you click on the link this will direct you to some information about these benefits. Also on this page you can be directed to information about benefits in your part of the UK. At the bottom of each country’s page you will find details of where you can get some professional benefit advice.

Rosanna

Advice and Information Team   

Submitted by Rosanna on

Hello, I was diagnosed with epilepsy when i was 13 after my parents found me having a fit early hours of the morning. I had an EEG and a CAT scan but both came back fine. I was put on various medications but the one that works for me is Lamotrigine. I am 20 now, engaged and expecting my first child and i still see my consultant. I have not had a fit for at least 8 months and i have learnt to deal with it a lot better. i still get worried in case i have another one but as i know when i am going to have one i can stay safe until i come out of it. i hope my information will be useful to read for some people. Thanks :)

Submitted by Laura-Jayne on

Hi. My name is Derek. I am 50 years old. For six years, between the ages of three and nine, I suffered from epilepsy. Also, my most recent ex still suffers. I learnt at quite an early age, how to put someone into the recovery position, should they have a fit. I did so, one day in art class, at St. Giles School, South Croydon, where I went, for the last two years of my days of education.

Submitted by Derek Evans on

I am genuinely confused. I have never experienced any symptoms of epilepsy or of fitting and seizures. I have never been on medication or had any previous health problems at all. Epilepsy doesn't run in my family.

About 5 or 6 years ago I had a heavy night of drinking. I woke up the next morning with a bad hangover and was making breakfast when down I went. Fortunately my parents were able to get an ambulance and I went to hospital.

This has now happened about 10 times in those last 6 or so years. Every time it is a similar story, I have a late night drinking alcohol, have less than 6 hours sleep, typically I don't have any water or eat salty food and dehydrate myself, then wake up and a couple of hours later suffer a tonic chlonic seizure.

About two weeks ago I had an especially bad episode. I was out for about 30 minutes and my pulse slowed down so much that the police that attended before the paramedics arrived assumed i was a goner. Quite scary in hindsight. I recovered fully and am broadly ok, though I am having some concerns about my levels of concentration, which are far worse than before the seizure. I am also far more forgetful and do not feel nearly as mentally sharp as before.

I have two questions - firstly are these events, which do not happen outside these very specific triggers, managed and definitely epilepsy? Secondly, is the neurological problem linked and is it reversible?

Submitted by Michael Stereo on

Hi Michael

Everyone has a seizure threshold. It is possible yours is low enough that certain things can trigger a seizure.  In someone with a higher seizure threshold, the same things would not trigger a seizure. 

Epilepsy is defined as recurrent seizures. So if you see a neurologist, they may diagnose you as having epilepsy.

There are many reasons why someone may have problems with concentration and mental sharpness. People do often experience something of this after a particularly severe seizure. Stress can also have an effect on this.

The episode you experienced two weeks ago sounds scary and dangerous. If someone has a seizure for more than five minutes, this is usually a medical emergency and is called status epilepticus. When someone is in this state for 30 minutes or more, it is possible for this to result in permanent brain damage.  So it's important to be talking to your doctor about ways to minimise the risk of this happening in the future.

 I do hope you are now seeing a neurologist. And that you are feeling a little clearer about your situation. 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 on

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

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