Some things make seizures more likely for some people with epilepsy. These are often referred to as ‘triggers’. Triggers are things like stress, not sleeping well and drinking too much alcohol. Some people say they have more seizures if they miss meals. Not taking your epilepsy medicine is another common trigger. A very small number of people with epilepsy have seizures triggered by lights that flash or flicker. Avoiding triggers can stop you having seizures.
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:
F095.01
This information has been produced under the terms of The Information Standard.
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Updated January 2012To be reviewed January 2014
Comments: read the 40 comments or add yours
Comments
My 6 year old son has now had 3 possible seizure. The first 2 times he complained of head aches, then he became non responsive ( lights where on but nobody home) could not look at me or talk, then he vomited huge amounts of food (it was like a continuous long sausage). Once he came around he was confused and very sleepy (all up about 15min). The 3rd time he started complaining that he could not see and was rubbing his eyes, become confused and unable to focus or talk followed by vomiting again, confusion and tired. He does not recall what happens. Is this epilepsy as I have had no dealings with epilepsy before now. I'm so scared that he will be missed diagnosed and just put on medication??????????????
Dose any know if food can trigger seizures as 2 twice during my sons seizure he had cheese. He has eaten different cheese with no seizures, can certain cheese do this?????
We are now waiting for a referal to a neurologist.
Hi, yes my son's triggers are too much gluten, cheese, aspartame, lack of sleep and the weird light/sound effect you get in some public indoor swimming pools.
We also held off from medicating and ultimately my son's seizures are caused by another condition - all the tests do take time but I'm glad we held off because it meant nothing was masked.
We also saw a kinesiologist and she advised sheep's cheese would be ok, but not goat's - although I believe that is not always the case.
Hope this was helpful
ATB
Shell x
things that trigger you must pay close atetion to abnormal disorders the patient may give warnings it took a while for us .My wife is 36 but has allways had siezers when she was a child them they stoped for about 14 years but came back with a vengence .By the time she got 30 years her grandmall seizers were violent she never remembers them thank god .Flashing lights even mild flashes would be enueff for head pains, Fear ,she had to see the doc to give Biopsy tissue she was tremblen in fear after procedure 1 hour later she took a ride in ambulance,Heat our air went out we had to travel 80 miles in heat i could see the exhaustion it was causing we got to the hotel the siezer hit about 3 hours later,stress the 1 that gets her the most we have 4 babies and let me tell you ,you just got to find a way to be calm i would get her to just relax in bed watch tv and just not worry about the house until her stress is relieved .Aug 24th 2012 i wont forget that as if siezers wernt bad enuff this siezer was diferent when you see your family do something diferent you call for help cause it could be something bad my wife developed a brain Hemorrhage it started like a siezer but she screamed out in the midle of it i never seen that before it was like she was in bad pain she went in respiratory failure the ambulace got here just in time she was in I C U for 7 days 1st on life suport .She went home after 9 days but it took so much memory we just hope it comes back in time she had that other i spoke of after doc apointment dec,26 the day after christmas 7 hours in hospital she was ok after 5 siezers she remembers nothing .i hope this helps somebody
Im a high schooler and i have grand mal seizures for about 1-2 years now, i took the tests and my body was 100% healthy, just a couple days ago i had a seizure that people say it lasted for about 15-20 minutes, i would really like info of if this is normal or something im actually getting scared for once...
Hi Austin
I’m not surprised you’re getting scared – that sounds like a long
seizure. Are you being treated by an epilepsy specialist? If you are, they should have told you that having clear tests doesn’t mean you don’t have epilepsy. It just means that nothing abnormal has shown up on the tests. If you are not being treated by an epilepsy specialist, it would be worth asking for another opinion from a suitably qualified doctor. If you are not in the UK, your local epilepsy organisationshould be able to tell you where there are epilepsy doctors in your area.
Many people with epilepsy are very healthy. It’s just that they have a brief disruption in the way their brain works from time to time, causing them to have seizures. With the right treatment, seven out of every 10 people will have their seizures controlled.
Have a look at the diagnosis section of our website, as it will give you some information to discuss with your doctors. You could also email the Epilepsy Helpline if you want to discuss this further.
Kathy
Advice and Information Team
Oh yes, this is just so much fun. At 58 I had my first seizure, a grand mall. At 2 AM my family heard a loud thump,and found me on the floor, I had hit my head, and was in a full fledged grand mall seizure, 911 was called due to a previous injury that could cause a major problem trying to deal with it, or move me, ect., ect., ect. Once the paramedics got there I guess I decked one of them while they were trying to get me ready for transport, I am led to believe that I really nailed the poor guy, Oh yes, life is wonderful. I have no memory of any of it.
I have since had about 6 more seizures, and have no recolection of any of them, the last 6, or the first one. I have been working with a neurologist who speallizes in the field, and he has told me there is no evidence of any problems on the scans, eegs, ect. There are no triggers that I know of, there is no aura prior, and no indiction that I am about to have one. How do you deal with this, especially starting at age 58. I really don't need this in my life, not with the other major health problems I have. I need answers, lots of them, and soon... I've about had it.
I developed a brain tumour related epilepsy AFTER the removal of a large tumour of a type which is highly correlated with developing epileptic seizures at some time after the tumour's removal in people who never had them before. I cannot tolerate anti-epileptic drugs, which I understand is true of at least 25% of people with epileptic seizures. I eat a healthy balanced diet, primarily organic and haven't eaten anything with food additives, etc in decades. I can't help thinking there must be something else I could be doing. Believe me, the obvious stuff, I've tried or I'm already doing it. (Oh, *&~%!!!! some kids are shrieking outside.)
My seizures are simple partial seizures of the frontal lobe. I don't suffer altered or lost consciousness but I lose motor function control and can't speak or breathe properly, often sounding like a barking seal while twitching wildly. I remember every single detail before, during and after. If one more person says "Calm down, lady" to me.... I try to get to a quiet place as soon as I sense it might be coming, but that's not always possible and often I have no warning at all.
The seizures are triggered by sounds of various frequencies, rhythms and volumes. I'd like to know what other people with sound- triggered seizures do because noise-attenuating earplugs don't block all frequencies and it's not recommended to wear them all the time. They help with some of it, but not all.
It's impossible to avoid sound. Moving to the middle of nowhere is not an option. I try to avoid the High Street and then find scaffolding being erected all along the back streets, or road works. I try to walk in a quiet place and some busker has set up a massive amplifier. There's blasting music and construction noise almost everywhere you go these days. The other day I had three bad seizures in 40 minutes,the first one triggered by a squealing 2-year-old with a piercing voice at a place where I had to do an errand. When she began banging on the counter with a metal stapler and her mother ignored my pleas to take it away from her, I went into a seizure and got the usual judgemental looks until people realized what was going on (I carry a letter from my doctor but not always coordinated enough to get it out of my handbag. I do NOT need medical attention - I just need quiet. - went to a quieter safe place where they know me and someone suddenly turned on a noisy electrical machine like a loud drill - went right back into a worse seizure...
I have no intention of avoiding life, sitting home wrapped in cotton wool because of these things, but just getting to the quiet places I enjoy and trying to participate in my normal activities has become so fraught. I'm always having to walk out of places because it's too loud. The seizures are so exhausting I feel ill half the time.
Anybody else have seizures triggered by sounds? How do people manage?
Hi Susan,
Have a look at this link.
http://epilepsyfoundation.ning.com/forum/topics/seizures-induced-by-musi...
It is from someone who like you has seizures as a result of noise. Apparently ther are quite a few who have music or specific sounds as a trigger .
Hope it is of some use and that you may find a way to reduce or resolve it.
Regards, Susan
Hello, I too have seizures that are triggered by sound among other things. I know this may sound drastic but I moved to a place in a smaller town that had less traffic and in a much quieter neighborhood. There are some places I can't go to at all. (Concerts, sometimes supermarket on busy days, etc.) I always use noise cancelling ear plugs and if your ears are sensitive, you can purchase the best hoise cancelling head phones you can find. It doesn't completely rid your environment of noise, but it will lessen the chance of my seizures being triggered. If I wake in the morning and feel that I haven't rested at all even when I have, I choose not to make that a day where errrands are ran. Some days when I absolutely have to run errands, I have some of my pills cuts down into quarters and I will take extra under the direction of my doctor. That is not something anyone should do without approval or the direction of a neurologist. I am on such a low dose of Trileptal that a quarter is such an insignificant amount causing minimal drowsiness.
Unfortunately, you can only try your hardest to block some of the noise. It truly sounds like you live in a very populated area and that just didn't work well for me so I had to change that aspect of my life. I do wear a medical bracelet and I would recommend you get one and wear it if you don't have one. They can be quite light and fashionable if that is a concern.
The noise around you won't completely stop and unfortunately others who aren't overstimulated by noise may not even have common sense or courteousy to try to keep their children from screaming, but you can equip yourself as best as possible with the ear plugs or ear phones and if you can, move to a quieter area. Small town where most of the town operates more quietly. Believe me, those places exist.
Good luck with your Epilepsy and may the good LORD direct your paths. He has a watchful hand over all of us and truly has given me peace where I thought it couldn't exist.
I have suffered from Epilepsy for the previous twelve years following a criminal assault when I had my head slammed in the car door. The seizures got worse and I moved back to Coventry to a flat next to my cousin who is also my carer. I have a young couple who have no respect for my condition and go out to work at 4.45am every morning, crashing and stamping around disturbing my sleep, and with the stress this causes affects my seizures. Everyday I have to try and adjust my sleep pattern as they have no respect for my condition, and following the seizures the stress and anxiety this matter is causing is also affect my depression and other medical conditions.
Why cant these people show some respect for their neighbours. To avoid disturbing them and their sleep pattern I use cordless headphones to watch the TV and use my stereo, and I can still hear them when they are around as I dont have the sound up too loud after 9.00pm.
I am not a mental case, I just like many others are unfortunate to enough to suffer this through unforeseen circumstances. It would be wonderful to be able to get out and take a salaried position, but even when the interview is going well, mention the epilepsy and the tone of the interview changes, many say due to the requirements of the Health & Safety requirements, but look for voluntary positions and they are everywhere.
But again I have no faith in the Chief Consultants regarding the epilepsy reports that they prepare. I went to see a specialist (?) in Wolverhampton to get a report for my solicitors. This report costing over £700 had to be returned as the first page stated that I had my "hand" slammed in the car door, by the third party and not my "head". Epilepsy is a terrible unseen medical problem, like migraineare,no broken bones or plasters, why cant we be treated with the respect that we deserve.
Well, it has just passed 2.00pm so perhaps I ought to get some sleep now before my sleep pattern is disturbed again during the night, and I enter the downward spiral again.
I am shocked that this article would incorrectly state that there is no evidence that certain foods can be a trigger for people with epilepsy. Aspartame is a very common trigger for people with epilepsy, if you ask many people, you will find this to be the case. It is in my case. The FSA said there was no evidence that aspartame is a seizure trigger in emails from them. I offered to prove it was a trigger for me with proof from my GP and neurologists. However, the FSA then decided to ignore the emails. the evidence IS out there, I doubt very much I am the first person to offer such proof, it is just that nobody wants to "bad mouth" the aspartame companies.
Hi David,
Thanks for this feedback. We are looking into latest research and will post our findings shortly.
Cherry
Advice and Information Team
I'm 25 & Just found out i have epilepsy my neurologist has put me on 500mg keppra twice a day but am 2 scared 2 take it as I've heard this drug can cause more seizures. I had a ctscan it came back clear now am waitin 2 have a mri & eeg done. I know nothing about epilepsy & I'm really scared. My last seizure was a bad 1 i was in the shower then i came 2 in the bottom of it with blood coming out of my mouth . Its effecting my life so much i never want 2 leave the house as I'm scared of having a seizure in public & being judged. Please does any1 have any advice they can give me ????????
Hi Samantha
I just started taking Keppra about 5 weeks ago. I am only on 250 mg twice a day. So far it's made me tired but that's getting better. I have not experienced any rage, depression, anxiety or anything like that, even though I have a long history of depression. Also, my thoughts are a lot more streamlined it seems, I don't trip over my words as much when I speak and don't vague out as much which is definitely positive. But Keppra can be a great drug for some people and an unpleasant drug for others, you just have to try it, it's the only way to find out.
It hasn't cause more seizures in me, but at least I only have auras now, instead of an aura following a generalised seizure.
Just give it a try and if it's horrible, they will wean you off.
I was diagnosed with epilepsy and given a prescription a few years ago and I was also scared to take it. I kept my pills under the bathroom sink and went on with life. Then one day while driving to the grocery store I had a seizure and lost consciousness. I came to in the emergency room with the paramedics. My gf who was passenger in the car saw me slump over and she pulled the car off to the side, a passerby phoned 911. I realized that day that I needed the medication. Unfortunately I lost my drivers license for a while year after that which was a really rough thing to happen to me, it affected all aspects of my life. Perhaps if I started taking my meds when I was given them, I could have avoided that. Im also very lucky that I wasn't alone in the car that day cause it could have been really ugly. My advice is to take your medication because if this is epilepsy, it's not going to go away on its own.
I was diagnosed with epilepsy at age 35, now 7 years ago. My first seizure was whilst I was driving the car - I am fortunate that I always have a very definite aura and am able to get into a safe place every time. I've had 7 full sezures in total.
I've not had a full seizure for 5 years now however it's not fully under control and I still have partial seizures around every 3 weeks or so. I take oxcarbazepine (825mg daily) and lamotrogine (500mg daily) however my neurologist is considering changing it as its not 100% effective.
To all the people in this chat who have been recently diagnosed yes, its scary. Yes, it embarassing. Yes, it's frustrating to not know the cause and not be able to do anything about it. My advice is to keep talking to doctors, seek specialist help if you can and if they tell you to take medication, take it! I've not replied to a chat like this before but thank you to everyone - it helps to know we're not alone!
hi samantha, im Martin and im 24, i have suffered from epilepsy from been 6 until 15 only to have the seizures return again as i turned 24. my advice is to continue with your day to day life and try not to let it get you down if you do happen to have a seizure while out and about, people only fear that which they don't understand. im currently on 1700mg epilin and work in a call centre where im surrounded by 100 or so other people and have around 3 seizures a week, at first i dreaded the idea of people seeing me have a seizure but when i had my first seizure at work not only did i find people didn't think any less of me, they actually all banded together to support me when i needed it the most and helped keep my moral up. i wish you well and hope you get your seizures under control. don't let it keep you shut in doors, live your life but just take each day as it comes, don't sweat the small stuff, that's how i keep sane :)
Hi Samantha
Fear is not an uncommon feeling when someone has been diagnosed with epilepsy. You said that you know nothing about epilepsy, or the medicines to control it, which can add to that fear. So, it’s important for you to remember that epilepsy medicines are given to try and control seizures.
The usual way is to start an epilepsy medicine is on a low dose and gradually built it up to find a dose that will control seizures. Doing it this way will lessen the possibility of you getting side effects and give your body a chance to get used to it. Some people find that they can have seizure if they are taking too much of their epilepsy medicine, or not taking enough. So, if you do decide to take Keppra, it should be monitored by your GP or neurologist, while you are increasing it.
You mentioned that your neurologist has put you on 500 mg, twice daily. This is unusual, as in the medicines prescribing guide called British National Formulary (BNF). it says that the usual starter dose of Keppra is 250 mg daily, for one to two weeks. Then to increase to 250 mg, twice daily. After that it is increased in steps of 250 mg until the right dose is found. Although, sometimes a doctor might feel that their patient would benefit from a quicker than recommended increase. You could check this with your GP or neurologist.
It must have been very frightening to wake up at the bottom of the shower. During a tonic-clonic, convulsive, seizure it’s not uncommon to bite the tongue or inside of the cheek. Was this where the blood came from? You might find it helpful to read our website information on the symptoms of tonic clonic seizures. This way you will know what to expect.
I hope you are finding your way around our website, easily, as there is lots of information on many aspects of epilepsy to be found. Many people with epilepsy have said that the more they understand their epilepsy, the more they feel in control of their situation.
If you would like to speak to others with epilepsy for support, you can do this through our forum4e. You will need to become a member to do this, but membership is free. We also have branches where people with epilepsy meet for mutual support. You can find if there’s a branch in your area on our website.
Advice and Information Team
Hi,my husband had a seizure in last yr march for da 1st time,came from toilet fell down, made a funny sound,with white stuff cuming out of his mouth,knocked his head ,bit his tongue,pulled very stuff,came right after a few minutes,confused,dont remember nothing very imbaresed afterwards.test done bt all fine.last nite 07032012 he had da same thing bt dis time in bed at 2am in da morning .iam very scared when dis happen as he can feel it cuming dan he calls me,bt i have no idea what to do to prevent it from happening.vey concern bt his healh as he dnt have any kids yet.please advise what i can do to help him.concern wife
Hi Lesley-anne
It can be frightening to watch someone you care for have a seizure. This is a normal reaction. I hope it helps you to know that people who have convulsive type seizures, called tonic-clonic seizures, don’t know what is happening to them. We have some information on first aid for seizures on our website. This also shows a video of what to do if a tonic-clonic seizure happens. Once you know what to do during a seizure, you might feel more confident when you help your husband.
Now that your husband has had another seizure it’s important for him to talk to his doctor. When more than one epileptic seizure happens, this is the time when epilepsy medicine may be discussed to try and stop the seizures.
If your husband is given epilepsy medicine and he does decide to take them, the doctor will choose one that suits his seizure types. It’s usual to start an a low dose and gradually increase it to the maintenance dose. The maintenance dose is the amount of medicine which is thought to work well at controlling seizures. We have more detailed information on treatment of epilepsy on our website.
Advice and Information Team
Hi, I'm 17 years old and had my 1st seizure last month at school, I was rushed to hospital where the started me on epilim immediately they then took me to get a EEG but it was normal (by then I had epilim in my bloodstream) so I was discharged and was told it was only in my head, so my mom took me to another doctor a week later who did another EEG and saw there is abnormality. After all this I'm still weak, short of breath and get extremely light headed and every time a light flashes fast I get a extremely painful headache ... should I be worried ?
Hi Jikita
Epilepsy isn’t an easy medical condition to diagnose and it can take time. So I hope your diagnosis is sorted out now.
You mentioned the symptoms that you are having and asked if you should be worried. I certainly think you should write your symptoms down for your doctor, and mention it next time you go. That includes telling the doctor about your extremely painful headaches. You shouldn’t have to put up with such pain.
There are lots of different reasons why someone might have headaches. Some people who don’t have epilepsy might find a headache starts because of flashing lights, while others have headaches as part of their seizures. So it doesn’t necessarily mean your headaches are due to epilepsy, but they could be. If you have photosensitive epilepsy (seizures due to flickering or flashing lights), the EEG would pick this up. You might remember that lights are flashed in front of your eyes, during the EEG test. So, your doctor should be able to tell you if, what they saw on the EEG results, was epileptic activity due to the lights.
You might find it helpful to read our website information on EEGs;. As you can see from this information it’s not unusual to have a normal EEG and still have epilepsy. An EEG only records what is happening to the brain wave patterns at the time of the test. So, it can be different on two separate days.
Advice and Information Team
Hey so I am 18 years old and had my first seizure when I was 16.My parents said that it lasted for about 1 min or a little less. Anyway so the main reasons as to why it happened was because I was in my room no lights on and I had my laptop placed on my stomach and like spent too many hours on it. The other reason was that I wanted to lose weight and I was on a diet ( even if I wanted to eat a candy I wouldn't ). I was stressed because we also had a test coming up , um I had an energy drink and sime time after it just happened. Like I said it lasted
for 1 min and no bubbles or drool or anything. Anyway so I had a standard EEG and the docs said it was crystal clear. The seizure occurred in february but in july it happened again only this time it lasted for a few seconds. The reasons were pretty. Much the same diet playing a video game in a dark room but this time it was really warm outside and I was kind of tired and all of these combined together triggered my second and last one seizure. I went to the docs again and this time I did a sleep deprived EEG again it came out crystal clear . She told me that I had to be careful for at least 2 years and not to drink or smoke ( Iive in Sweden)and stay up late and eventhough nothing happened during those 2 years I still wake up sometimes thinking that something might have happened whilst I was sleeping I talked to my doc and she reassurred me by telling me that it is psychological and that it was normall to feel like that. PS IN all the check ups I had during those 2 years I did tests with my doc like strenght or reflex etc
i used to have seizures but not had them in 9 years and now I am 17 years old .
Hello, well I'm 16 y/o and I woke up quite early on a monday morning and I passed out and had a fit in the kitchen. That's all I remember, then my mum was calling my name for a few minutes and she said my eyes went white and I was shaking really bad and wee'ed my myself. I woke up, I was crying and confused of what was going on, I didn't reallise that I wee'ed myself, they called the ambulance and took me to the hospital to do some tests. Everything was fine but since that day I get really bad headaches on my temper and I'm scared that I'm epileptic and they didn't detect it. Because they had no idea why this happened and they think I'm epileptic but there's nothing they can do as I only had 1 seizure.
Hi, Im 26 years old and currently waiting to see a neurologist (26 week waiting list). My first fit/seizure was in April 2005 and my previous dr informed me it was due to a rapid rise in my temp. I now know this is not true in anyone of 5 years of age. Since then I had on average 1 seizure a year and as such did not take any further advice. Until now. I have had several seizures this year (a marked increase in volume but not duration) and have experienced different symptoms. My first seizure came on outdoors whilst in the garden with my boyfriend. I had an ecoli infection at the time and was goin through a stressful time. I felt my heart racing, sweating and trembling I found a seat. I lost my eye sight and consciousness for a short period. I shook and my muscles temored and took some time for me to come around. Right after my sight saw everything in yellow, as shades first, then shapes and eventually as normal. Going into the house to have something to eat and drink I had another, not so severe.
Now I have a different type of seizure. I get some early warning signs such as loss of appetite, headache, nausea, fatigue and just as it starts to happen my heart races, i sweat profusely, i shake inside and out, im told my colour disappears and i become very grey and vacant, I am usually able to get to a safe place; the floor ideally. I find if I rest my hands on my lap i dont jerk as much, im completely conscious and aware but (without sounding weird or confusing) i am not responsive to people around me. I have an overall feeling of fear like I'm going to die. My breathing becomes deep and erratic, almost like I'm trying to regulate my breathing whilst my heart feels like its beating in my throat.
In addition to this at night time and occasionally early morning I have muscle spasms or twitching where my arms, shoulders, legs and feet jerk but I am not in a seizure. I dont panic anymore, I go with the flow and let them get on with it.
I have a severe headache after each episode and find im extremely tired, almost exhausted. I usually sleep well that night but struggle to get up the next day.
I should mention I've suffered with migraines since I was 9 years of age, they've never really investigated their cause and generally tell me to take aspirin (due to a chest problem) or ibuprofen.
What Id like to know is whether these sound like seizures. I dont know how you felt when you first started having these episodes but I'm doubting myself and wondering if I am actually fitting. Im also wondering if my migraines are linked. I had a fit Thursday evening at my brothers home, hadnt eaten anything substantial (no appetite) and felt it coming on. The following day I had a persistent headache above my right eye with a pulsating feeling and pressure to my temple area. The headache did not subside. I woke with it on saturday morning and took two aspirin, within 2 hours it was even stronger and i took ibuprofen. It subsided a little but to this day (Tuesday) I am still struggling to get rid of it. My sister in law gave me a migraine pill prescirbed to her by her dr which act immediately and it didnt touch it. I still have the migraine right now and have taken several doses of neurofen express capsules...to no avail :( (My period is due in 2 days perhaps that could be the cause of the migraine or fit I dont know.)
Im at my wits end. I dont know how I can cope with this until Novemeber when I expect to see the neurologist and my GP doesnt tell me anything. He notes down my symptoms and tells me to go to A&E if I get another so they can do tests. I never go to A&E. I feel silly saying "ive had a fit" so what im not dying. On the other hand I feel completely exhausted and the last thing I want to do is leave the house, I just want to sleep. Do you/did you go to a&e after every seizure? (I dont drive now either they revoked my license because of the seizures so its not as easy as it sounds to get there either).
Can you relate to any of this? What was your prognosis, triggers etc I'm confused and worried. Oh and my occupational health nurse yesturday decided to tell me it could be a tumor (but dont worry about it just yet!) WTF as if I need to hear things like that, it hadnt entered my mind thank you!!
Any advice you can give would be great.x
can taking anti biotics affect the medication you take for epilepsy and where do i get a list of medications not to be taken when an epileptic.
Hi. Some antibiotics can affect some epilepsy medicines.
More generally there are some epilepsy medicines which interact with some other medicines both prescribed and over-the-counter. So these need checking on an individual basis.
You can do this by reading the patient information leaflet which comes with your medicine, by asking your doctor and by asking your pharmacist. You are also welcome to ring the Epilepsy Helpline and we can check them for you.
I hope this helps.
Cherry
Advice and Information Team
More information on epilepsy medicines
More information on the Epilepsy Helpline
hi
can someone help me here, i started to feel sick and when i stood up i remember vomiting but that was the last i remember. i was on the train i could hear people saying she has just collapased . i got up but totally confused and struggling to calm down. this happened over a period of 15mins. a elderly lady followed me making sure i was ok, she asked me if i was epileptic, my brother died in 1999 with a fit in his sleep.
Hi Anne
Firstly, I’m sorry to hear of your loss. The fact your brother died due to a seizure, must have played on your mind after you had your episode on the train. I hope, since your posting, you have seen a doctor about this and got an explanation of what happened. If they have said it may be epilepsy and you need any advice or information on this, please do not hesitate to contact our Advice and Information Team. Here is information on our website about the different ways you can contact us.
Diane
Advice and Information Team
Few quick questions. Been diagnosed since I was 14 (11 years now, eeep!) but recently have seem to become a lot more symptomatic.
Was just wondering of it were possible for epilepsy to get progressively worse?
My attitude has been changing a lot recently; so much more temperamental, talking back to being, generally not me.
My main trigger seems to be rediculous - co-ordination. Doing two things at once seems to start with a strange feeling, forgetting that I'm doing what I'm doing, starting again, this repeating, and then cycles or twitches.
This can include everything; typing (fingers and thought), playing a game (controls and thought), even walking.
The worst trigger I think I've got is escalators - seriously.
Hi Steve
You seem to have a lot going on at the moment. But epilepsy can change over time, as can your need for epilepsy medicines, And stress can play a part too. I think it would be good for you to talk with your epilepsy specialist about how you are being affected just now. If you don’t have an epilepsy specialist, let us know where you live, and we’ll try to point you to one in your area.
Kathy
Advice and Information Team
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
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
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?
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
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!
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
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