What is epilepsy?
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Last updated 28 Apr 2010, review date due 28 Apr 2011
Epilepsy is currently defined as a tendency to have recurrent seizures (sometimes called fits). A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal message passing between brain cells. This disruption results in the brain’s messages becoming halted or mixed up.
The brain is responsible for all the functions of your body, so what you experience during a seizure will depend on where in your brain the epileptic activity begins and how widely and rapidly it spreads. For this reason, there are many different types of seizure and each person will experience epilepsy in a way that is unique to them.
What causes epilepsy?
Sometimes the reason epilepsy develops is clear. It could be because of brain damage caused by a difficult birth; a severe blow to the head; a stroke; or an infection of the brain such as meningitis. Very occasionally the cause is a brain tumour. Epilepsy with a known cause is called ‘symptomatic’ epilepsy. For most people - six out of ten, in fact - there is no known cause and this is called ‘idiopathic’ epilepsy.
How is epilepsy diagnosed?
There is no conclusive test for epilepsy, although tests such as the electroencephalogram (EEG) – which records brainwave patterns - can give doctors useful information. Epilepsy should be diagnosed by a doctor with specialist training in epilepsy. An epilepsy specialist will use their own expert knowledge, along with test results and the patient’s or witness’s accounts of the seizures, to make the diagnosis.
Because epilepsy is currently defined as the tendency to have recurrent seizures, it is unusual to be diagnosed with epilepsy after only one seizure. In the UK around one in 20 people will have a single seizure at some point in their life, whereas one in 131 people have epilepsy.
Treatment of epilepsy
At the moment there is no cure for epilepsy. However, with the right type and dosage of anti-epileptic medication, about 70 per cent of people with epilepsy could have their seizures completely controlled.
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Twitter Updates
Epilepsy Action blog
Comments
I have had epilepsy for 31 years, since i was 3 years old i have had different types of seizures,over the past 15 years they have been at night,seven years ago they began to get worse.I would fall asleep and 10-15 minutes later wake up with my arms stretched out and make a groaning sound which my wife would tell me about,and then i would go back to sleep.3 years ago they got worse than previous i would still wake up after 10-15 minutes and do similar things except i could not control my arm and legs as they would go in all directions leaving me to sleep on my own and my wife with the children,I also would twitch all night which caused me to have little sleep.the neurologist told me i was waking up probably more than i realised.I also started twitching in the day and unfortunately i was admitted into hospital for 6 weeks after having status epilepsy.I am self employed so when i lost my licence i thought that would affect my career but i had a family member help me with work.Previous to being in hospital i was doing 12 hour days for 5 days and 6 hour days on a saturday which i think is the probable cause.I am part of a epilepsy support group in lincoln which is run by people with epilepsy so we can share our experiences with epilepsy.It is hard to explain what my seizures were like but it felt like a strange sensation rising from my feet going through my body and soon as it reached my head it felt like a massive electric shock as my whole body would be out of control and i was helpless and the anticipation that it is going to happen again made it hard to sleep.Hope it has helped.Thanks Andy,lincolnshire
Hi everyone,
Oh where to begin..I am 35 and I started having seizures last June (I guess). All I know is what my husband told me that I was walking down the hall stumbling all over the place and slurring my speech. He could not get me to sit down and all I wanted to do was keep busy. He was worried about me falling down the steps. All I remember about the whole incident was being really tired and wanting to take a nap. I did for hours (about 4-5 hours). I went to the family doctor and he sent me to a neurologist and for an MRI. The next time was in July 2009 at a coworker’s house during a lunch break the same day I had an EEG that morning and was called to let me know that it was normal. My MRI was normal (no scars or abnormalities). In the incident in July, my coworker called 911 and I was off to the hospital. EEG was normal again and they were not really sure. They called my neurologist and she put me on Keppra. This obviously did not help at least at the level that she gave me because in August I had another one..This one was in front of family during dining. I scared the heck out of my 10 and 5 year olds. I then went on Topamax but since I was in denial that I was having seizures, I only took the 50 mg level. (I guess I should have been significantly higher.) The next was November and it has not stopped since then. I have now had 20 grand mal seizures (everyone is grand mal). I have been in an epileptic monitoring group for a week which no results besides being normal and no seizures. My meds changed in April 2010 to Limictal. I have now been sent to a neurosurgeon that specializes in Seizures and Epilepsy. He is increasing my Limictal but I have had 2 more seizures on his level. I go back to see him next week. I cannot wait to see him to see what happens next.
So at this time, normal EEG's, normal MRI's, I just want for a Cat scan and will find out the results next week. 3 different meds so far. I am not really having any side effects to this med but Topamax I was a zombie.
I am not sure about you guys but some problems that I am having are memory loss (I cannot remember clients - I am a counselor for people with disabilities), past memory (I cannot even remember major parts of my honeymoon 12 years ago), typing (my fingers do not move right to correctly spell words, and I am forgetting words when I speak. Are these from meds or are these brain cells that I am losing. It would still be nice to know when the seizures are coming from because my brain is not displaying anything.
I have lost my license back in December..I just feel lost in general. I just wish I can have some kind of an answer.
Kat I am sorry to say that I dont know anything about epilepsy BUT I do know FULL scale about anxiety and depression which I do believe go hand in hand sometimes. As I was reading your post I a flashbulb went off in my head. THe blinking lights the checkerboard the other things and the thinking that you have the photoscensitive epilepsy is I believe and I am not a doctor, but I would bet you 100 % that it is related to your anxiety. Only because on top of have the epilepsy your brain is in over drive which only Helps the anxiety to grow hence making you think, feel, and believe, that you might have this disease or that disease. I am on 60 mg of citalopram and have been for many years. which yes I agree the 10 might not be doing anything for you at all. It is so hard to write in one small post but if you ever need to talk please contact me I would be more than happy to talk with you.
I have been suffering from jerking limbs, head, shoulders, twitches in arms, hands etc when trying to get off to sleep for some time now. It is worse when im very tired. I go to bed wanting to sleep but im prevented from doing so because when i relax and start to drift off, or even just before this stage, i will get a sudden jerk in an area of my body, which feels very powerful. Sometimes i get the same feeling in my chest as well. If I get these symptoms they will persist all night preventing me from sleeping unless I take something to knock myself out, which isnt good as im left groggy in the morning, I occasionally get twitches when awake too, mainly in my legs/feet or hands but sometimes in my head. Could this be epilepsy?
Hi Shannon it is thought that children who develop Epilepsy at an early age do tend to outgrow it in their mid-late teens so hopefully fingers crossed you shall get rid of it...If you had not developed it until the age of about 17 then you have no way of getting rid of it just have to stick to the medication or alternative therapy and hope it works. Hope this helps xx
I'm Kat. I'm 19. I've had Epilepsy since I was 11. Recently I have started to feel different. . I have to go for another E.E.G in a few days. Because my head constantly feels like I'm having a seizure every second of everyday. It is the worst feeling in the world. I've coped with it since I was 17. I have also been diagnosed with a severe anxiety disorder. I feel down all the time. Because now. . Having Epilepsy makes me feel like icant do any of the things I used to do. Like drive. . swimming. . Walking alone. Now u can't do that because I feel like I'm going to have a seizure everywhere I go. I have been to see Psychiatrists etc. . But I just can't seem together my head around it. Recently. . Bright lights. Flickering lights. Looking at pictures with stripes and checkerboards gives me a permanent hot flush everytime a look at them. But idunno whether it's me getting worked up. Because I used to be fine with all them until I read about photosensitive epilepsy. Therefor I think I have it. . I didn't used to be terrified of flashing lights. But I am now. It's weird. I just want it all to stop. But no one knows what's the matter with me. . Doctors say it's all related to Anxiety disorder but. . If people knew how my head feels everyday. They wouldn't know how to describe it. Sometimes I can feel waves through my body and it gives me the worst headache after that happens. I don't know what it is. Sometimes I'm actually scared to go to sleep. I'm on 450mg of Lamotrigine a day and 40 mg of propanolol and 10mg of Citalopram. Which I think don't seem to be working. I'm just sick of my life right now. I'm at college. An my education is failing. Because I'm hardly ever there now. Because I'm frightened to leave my house. I hate being on my own. Anyways. If anyone has any information on this. Please email me! I want some answers because I'm proper sick! Someone please reply and let is know!
I had a seizure on an aeroplane once then.. i was walking home from work about 2 months ago and everything started spinning and i felt really ill then i woke up with two strangers holding my hands and ambulance people and i had took a seizure and i was in critical care. But i got out now im going to a neurologist again,, This morning i woke up with my tongue had been bit and my body is in agony as if i have did a work out and not warmed down. i think i had one in my bed .. I wish they just gave me something the now.. Makes me worried im a fit 23 year old.
Hi Liam. If you are not happy then go back to your doctor. There are loads of AED's on the market and depending on which type you have, there maybe a better one or you may be able to take another one with it. My children take Keppra and Epilim, mono therapy never worked for them!
Good luck!
nice page about epilepsy, am 13 atm and i've had epilepsy all ma life! it sucks everyone makes fun of me, i'd like to ask.. can you get rid of epilepsy? cos it's irritating me and i want rid of it!
Hi all,
my name is Liam, i've had epilepsy for 4 years (since i was 20) it's not a nice thing to have and i feel for anybody who has it. My friends keep telling me to get it sorted as my seizures are getting worse they started when i was younger. I would get home late from a night out a bit drunk lol and i would have a fit. Since then i've stopped going out and im on keppra (1 year) i've had more seizures since being on keppra then i have ever had before. PLEASE if anyone has any advice to offer it would be kindly taken.
What youve wrote sounds like me, i started having fits about 4 years ago and they started off in my sleep and id suddenly wake up and i could feel by whole bodie jerking and i also used to wet the bed which was embarrsing as no one knew i had epilepsy and must of thought i was weird or something, I didnt bothering telling anyone about what was happeneing as i didnt think anythink of it, my mum realised i was having seziures as we were talking chatting in bed one night when i just went into one and started shouting things telling them not to hurt me-dont have a clue why i said that? and my mum said my whole bodie was just going everywhere, its all kinda fuzzy after that and then all the rest of them were like that aswell but when i went to the hopsiptal and got all tests done they said they coulkdnt find anyfink wrong with me, but my mum insisted there was as most of my family are epileptic.. and since 2 years ago i havent had one which i feel really good about and im just happy that it eneded for me as they are really scary and they can stop things going on in life for you, and the migranes i used to get in the morning after a seziure i dont miss them either!!!!! i just hope somebody will be able to find a cure and help everyone out so they can lead a normal life and be able to do whatever they wanr eg driving! im just lucky its been two years and now im applying for my driving liscence but ive got to send off all kinds of documents to them about my fits, hopefully itll be okay. thanks for sharing your story anyway!! it just shows how many people are out there with the same problem as my family and me in the poast when i though i was weird and the only one. Thank you xxxxx
Hi my name is Maria i am 42 years of age got epilepsy when i was 17 years of age for no reason had been 12 years siezure free untill 3rd april had a siezure so upset anf depressed after all theses years cant drive my kids to school my whole life has changed and i wany my life back had some absences all day sunday dr has increased put me on epilum as well as the tegretol already on is there anyone else like me out there would like to hear from you Maria x
hi , im Helen . I live in Cyprus. i born with epilepsy because when i was born i couldnt took breathe about half an hour. however my first fit happens when i was 17 and now im 22. at first years i just could not get tired or i could not watched tv for many hours. When i was get tired i could not walk or speak. İ was just sit and wait. ı was unconcious so i was forgot everything i did at that moments. My friends said me, for instance you were wanted a coffee, but i didnt remember anything about that. i was lost my way all day. My memeory was lost and sometimes i could not find my to home. im taking some medicines and im better now. İts not happening everyday. actually its up to me. when i get stressed or too tired fits begin but they get low. i mean they are less rather than years before. but im get afraid when im driving a car. i have too drive a car because i have to go to college for everyday. i cant watch tv or use computer for many hours especially when im too tired. :((
Does anyone have who has the same thing ? , pls write your comments, i dont know anyone to speak who have an epilepsy...
Hi,I have had Epilpsy for 17 years ansd I am now nearly 28. People say that you get used to a condition the longer that you have it but I never have. I admit that I have not always took my medication like I should, but when you are out with your friends it does put a damper on things.
I live in Nottinghamshire, where Epilepsy was unheard of as I grew up. Having this strange illness where you are talking to people one moment then you are on your back staring in to the face of a doctor the next.
I feel sorry for anyone who went/goes through the unknowing of what happens.
Hi
I had a tumour. caused brain damage and epilepsy.
Mine is triggered by all sorts now...but thankfully controlled by drugs.
Lighting...mainly flickering types of lights.
stress. Low blood sugar. Unusual sensory input...for example, at a theatre or football ground.
It sounds a bit melodramatic...but my fits were dreadful and left me on verge of suicide. If they returned, I guarantee I'd do it. Mainly cos it affected one side of my brain, so that the other side just 'monitored' all the horrible feelings and I was fully aware of every pain in my body as it happened. Worse still, I'd try to 'correct' the problem but cos the wires were all crossed, the corrections just made it worse, which i tried to correct, which made it worse...and so and so on...until the pain took me into unconsciousness. Absolutely horrific. I'd have surgery without anasthaetic, rather than face it again. I think it was motor sensory feedback loops that were most affected.
Anyhow...
For me the worse part is that I 'look' fine. You can't wear a sign that says...hey...i'm struggling here folks, help me out. But....I'm back at work, never off sick with it..and always struggle on.
I really feel for anyone with this awful condition.
I was only diagnosed with epilepsy 3 years ago, I've just turned 19. I had never had a fit before although I had been having arm twitches in the mornings, Which I thought were just me being either tired or not quite being awake (you know, like leg twitches!) I went through some tests and am now on medication which fully controls my epilepsy. There is plenty of help out there, you just need to as your local hospitals, EEGs should be done as should a brain scan. I horse ride competitively, swim and intact play underwater hockey. It did stop me for a while and still worries me now. Epilepsy shouldn't stop your daughter doing anything, asking as you find out the trigger and find a way to control it then your daughter shouldn't be restricted. I still don't know how I got (juvenile myclonic epilepsy, but I'm barely affected. Just a tad bit sleepy after I've taken my medication. Hope this helps or atleast offers some comfort.
Hi Gemma, I have been diagnosed with temporal lobe epilepsy for over 6yrs now. My gp was treating me for panic attacks for at least 1yr before that. I was having hot flushes, severe headaches, absences etc. It was only the day that she had called me in to say she was going to cut down on the amount of medication she was giving me that i had what i always referred to as a "funny turn" while i was sat there talking to her. Immediately she said she knew what the problem was which was temporal lobe epilepsy and she put me on medication for it while i waited for hospital appointments etc to come through. I've been on a few different types of medication but i am now on one called "keppra" which is the one that suits me best. I see a specialist epilepsy nurse at my local hospital every six months but i can call her at any time if i have any problems. When i have a fit i too have absences, where i just seem to go into my own little world for up to 2 or 3 minutes. I know when the fit is going to happen too. The only way i can describe the "warning signs" is that i seem to get a buzzing in my head and a headache, then within about 1 minute the fit happens. Also i find that if i let myself get too hot that can also trigger a turn. After i've had a turn everything tastes like it is full of sugar and i can't eat or drink anything sweet. I am also extremely tired after having had a fit and usually need to lie down for an hour or two.
I hold down a very demanding full time job and i am in front of a pc for most of the working day. Strip lighting unless it is faulty (i.e. flickering) doesnt have any effect on me and i use the low energy bulbs all through my home and they don't trouble me either. I can go three months and not have a fit, then sometimes i can have 3 or 4 in a row, and then no more for another 3 months, very very weird. At the suggestion of my epilepsy nurse i keep a seizure diary, in that i have to make a note every time i have a fit, the date, time and what i was doing at the time. The only way i know if i've had one during the night which happens sometimes is when i get up the next morning and food/drink tastes sweet, then i know i've had one and make a note of it. I also claim DLA (disability living allowance), i don't qualify for the mobility part of it but i get roughly £240 every 4 weeks because i am not allowed to drive and if my husband doesnt take me where i need to go i have to get a taxi. I can't use a bus just in case i have a fit and i have an absence, and i could literally without realising what i am doing just wander off somewhere which as you can imagine could be very dangerous if i am not aware of what i am doing. Anyone whose epilepsy is classed as "uncontrolled" qaulifies, you can download the forms online, or the best way i think is to get the specialist you see to assist. My epilepsy nurse is fantastic and she had someone come to my home to help me fill in the forms. It only took roughly six weeks after my applying and i got it.
One thing really concerned me about your post and that was the fact that you are still driving. I work as a paralegal for a personal injury firm of solicitors and i know that if you havent been certified as fit free for at least 1yr you are not allowed to drive because you aren't covered by your insurer, so be very careful hun. If you cause an accident because you have an absence, not only are you not covered but you could also be charged.
Anyway, just wanted to say keep on plugging away at it, don't give up trying to get help, your gp is duty bound to send you for all the appropriate tests. If the medication you are on at the moment isnt helping to control them then insist that they give you a different one to try. Don't be scared at work either, does anyone at work know you have this problem? because things can be put in place to help, i know because i have a fantastic boss who knows what to look out for, and if i have a fit at work depending on the severity, she will either just let me sit quietly till i come out of it, or she will phone my hubbie and he comes and takes me home.
Keep your chin up and good luck Gemma
Hi
I am 25 years old and have only suffered from epilepsy for 4 years, i suffer from grand mal seizures which are very scary to me and very painful, i have suffered various injuries including a broken jaw. The thing that confuses me is that doctors ttell me epilepsy is often caused by head injuries or birth difficulties, i never suffered any of these. After i fit im very confused and always have severe pain in my right shoulder, does anyone else suffer this?? The fits have also caused me to be quite violent and irritable and it upsets my girlfriend which i hate doing, does anybody have any advice about these symptoms??
Thankyou
I am 16 and started having fits about 4 years ago. The doctors said that it could be my hormones and the changes in my body from going threw puberty. At first i didnt realy understand what the doctors where going on about. When i had my first fit it was in my sleep and i didnt know anything about it. When i gained conciousness aparently i started loading the car realy dont remeber that :S . Hearing that youv had a fit is scary and it worrys me. I dont like to admit that im epileptic but i fink thats because im scared. Im on medication thats ment to control it but i get the odd fit here every now and then and a few spazms. I advise any1 with epilepsy to get a decent night sleep every night, eat proper meals and not to get stressed. All this stuff your brain has to cope with and it just gets messed up and then fits occur. I hope ive helped :S. Feel free to message bak if any questions.
I had a simillar situation when I was younger I was put on a stronger AED to control my seizures but it made them worse instead so the doctor put me back on tegretol. your doctor will be able to help more but it took a specialist to tell my parents what was making me worse. hope this helps jane
I had a nasty car crash when I was 18 years old, since then I have been diagnosed of been epileptic I am now 22 years old and find it very hard to deal with the doctors have advised me that I can only drink a certain amount of alcohol which is a shame for someone my age.
I am find it very hard to cope with and have been having fits for the last 4 years with the longest spell being 8/9 months without.
Does anybody know of anything else it could be caused by or even is there an operation or regular injection you can have that makes life easier and better ??
Any comments would be more than welcome.
Please
I am a first aider at my work and have been for the last 5 years however today i encountered my first seizure. It really scared me as i went totally blank and felt helpless at the scene. The person having the seizure was my friend and although i have known her for many years i felt totally unprepared and terrified for her. After reading your website advice i realise that i did everything that you suggest and now feel a little more reassured that i could be of help in the future. However i really never understood quite how serious and widely spead this condition is and will be doing my best to make others at work more aware also. Thank you.
hi my daughter is 12 years old to and has just started to have fits .the first one on xmas eve and has had more since she is on medication epelim now which is helping at the moment .it was such a shock as shes never had any either. hows your daughter doing now?
I was diagnosed with epilepsy at age 35, in 2004. I moved to begin a Federal Gvt Job and was under a huge amount of stress. I had a seizure six months later after moving to begin my new job. Since then I have had five seizures and they seem occur every two years. I suffered my last seizure November 2009 while at church. I had auras before i had it. I don't recall anything. After having an event, I don't want to be around crowds. I now hate shopping malls, while i used to love them. Does anyone else feel anxious in huge crowds? I feel as if I am going to suffer a seizure. I found a new Dr. who seems to think it may have something to do with flourescent lighting, while past neurologists thought they were brought on by stress. When i think back, all but one of my seizures were in lots of flouresent lighting. I am still suffering from depression, and get like this after suffering from a seizure. It takes about 3-6 months to fully recover emotionally. Right now i feel frustrated. Help!!!
I was diagnosed with Grand Mal Epilepsy after I had three Grand Mal fits almost severing my tongue off completely and requiring hospital admission on every occasion in the space of three months when I was 21. I was prescribed epilim 500 x 2 twice a day, I have not taken epilim or any other anti epileptic since I was 23. Recently I was informed that the law states I am still an epileptic and I have to disclose this to employers, insurers and others. I have not told anyone for over 10 years now as I was either unable to get employment or insurance? If I have to declare this still am I entitled to claim disability due to the extra costs I will incur and the possible effect it will have on my current employment.
i was diagnosed with epilepsy as a child around 6months old i was bullied through schools because noone quite understood what it was and thought i was different.
my epilepsy is controlled i had professional help and i am off my medication the doctors decided my epilepsy was brung on by stress i have been clear of a fit for 3 months now i am 19 and i live my life like anyother 19 year old girl.
im a model and a pageant queen and i am currently training in spa therapy i am looking to be a teacher i dont let my epilepsy put me behind epilepsy is an illness but they can be controlled.
all my love mahala xxx
I have seizures it started when i was in 5th grade playing soccer. Ever since then iv'e been having them and i am 14 now. My neurologist is giving me medicine to try to cure it but it wont go away. And i have petit mal seizures by the way. Just pray for me! plzzzzz
Zakiya currently 8th grade and 14
I Have Recently Been Diagnosed With Primary Generilised Epilepsy And Dont Really Know Much About It, If Theres Anybody Out There With It Could You Give Me Some More Information About It..
Thank You
I have just found out that my 12 yr old son may have epilepsy, my concerns are that he has them when he is asleep and doesnt know when he has them, and has touble breathing when he's recovering. I am not convinced the docter has done enough to give us this result, my son has only been observed for a few hours on a childrens ward during the day, where all his vital signs are fine. Surely e.c.g.s or scans could of been done, or is this the n.h.s. saving money?
hey :). i'm 14 and i was officially diagnosed with epilepsy when i was 11. i started having little absences and my hands would shake when i went quite near the television. i asked my mum take me to the doctors cos i'd heard of it and i was worried about it. there, they done many tests and later found out i was epileptic. there is no record of any of my family having epilepsy so the doctors think the cause of it was when i was about 6 and i was going too fast down a hill on my bike without a helmet and i went into a tree and bruised my brain. i don't know why it took 5 years for the epilepsy to kick in.. i don't like telling people i have epilepsy as many people don't know what it is and i don't like to explain it all. it's so hard having epilepsy going through high school. i've only had one fit in school and all of my friends, my boyfriend, my boyfriends friends were all really really worried and didn't know what to do. luckily, the teachers did. it's been 3 years since i found out, and i still can't accept that i have epileps, i always feel like crying, thinking about it. and i've been suicidal many, many times /:. because of this, i have councelling twice a week. it's been quite alright, and now have a very good mate who goes there for the same reasons :). i hate having epilepsy, it stops me doing some things, that's why i'm sometimes suicidal, because i think it's taking over my life. but my boyfriend, friends, councellor, and family are getting me through it. soorrrrrrrrrrrrrrrrrrrrry for the massssssssive life story :L , thanks for reading though (: x
Hi, im 13 years old, adn i got diagnosed with epilepsy, about a year ago.
I'm finding it really hard to get to grips with the fact that i have it, and am constantly worrying about when i might Black Out. I don't fit, i just blackout, and go death/blind for a few minuetes. I am on tablets, and they have helped a bit, but I still worry alot. I also have a medi-braclet, which makes me feel a bit safer, but not fully safe.
Another problem is, my friends dont really understand, so they think im lying, or that im overreacting, when i have to sit of P.E. or turn away at flashing lights.
If anyone has any advice please reply!
Jessica, 13, Kent
i had epilepsy as a child and was on medication for five years,,. i had three fits and wasnt well and i am fine now but doctors say that it can return,i dont go anywhere where they are lots of strobe lights.
Hello there i was 14 when i got diagnosed with epilepsy and i took it real bad as i thought it was the end of all, but it was,nt as iam now 26 ive had a child which i never thought would happen due to my health i did loose alot of confidence and thought of myself as being different but iam not i class myself and others with epilepsy as UNIQUE it does get easier but not straite away u need to take each day as it comes as for your job i hope u dont loose it keep in mind u do have rights when it comes to work, how is your daughters health? and what type of epilepsy has she been diagnosed with? hope to hear back from u :-)
Epilepsy is horrible. i've had it scince i was 8 and im now 21. I find it very difficult. I've recently given birth and scared my Daughter has it. Id blame myself if she does. It dont run in my family. Though my sister has got the flashing lights one, Ive got server epilepsy i shake and alsorts its Embarrasing. I dont like going out due to im afried to do it in public ( i have numouse of times) And i feel sooo embarssed. I've had a lot recently and had to hand over my licence to DVLA i had gone 3 years with out one. Was so happy i always wanted a licence and when it got reprovoked i cried!
I feel like i can't talk to anyone about this as noone understands how it feels if they dont have it.
Thank you for listening
Hi Amanda, I was in the same boat as you just over 1 year ago my 3yr old daughter was diagnosed with myclonic- astatic epilepsy , which we were told is very rare in boys but especially rare in girls . It took over a yr to find out and now our consultant says maybe it's not this as she is having night fits as well. The medication is tiring for them and doesn't always work as we r on our 3rd one . We were told she probably won't out grow it now and she seems to have slight learning difficulties which her school are helping with .
I know you feel it's the end of the world right now as i did and sometimes still do , but kids with this can and do live a fullfilled life . Just keep calm , listen to your doctors , ask for advice and help when you need it , keep family and friends close for support and always above everything Thank god for your son and give him a cuddle as a cuddle and smile from them is like nothing else in this world.
Keep safe and it'll all work out , x
Hi,
I wanted to make a comment for Kellie and Hazel really. I too have temporal lobe epilepsy. I was diagnosed about 4 years ago. I am 36. It seems I have probably had it all my life and not known about it. I don't have absence seizures but I do have auras, see falling star like lights, have metallic tastes in my mouth, and smell them too, however I do also have a VERY sudden change in mood. So I completely sympathise with what you are going through. I can be sweetness and light one moment and then sooo angry the next. I know how difficult my fiance finds it, and it has got worse lately because they stopped my meds last year, having been given the all clear on my last EEG, however again I am experiencing auras, and mood swings related to them. It's very difficult as I know it is not the real me!
I am going to go and see my GP soon about restarting meds, however I am concerned, as they took me off Topiramate (Topomax) as I am soon to get married, and we want to try to conceive. However if I go back on meds they will put me on Lamotrigine. I am concerned about this, having read a lot of worrying side effects. I want to be on a med that is effective for me, which tompiramate was, but without the risk to an unborn child. It's all scary stuff.
Hope everyone else finds the solution that they need!
i am an 18 years old girl i was diagnosed with epilepsy at 6months old my epilepsy was monotered by a physciritist when i was 13 and it was found that stress is the cause when i have a seasuire.my epilepsy is controld and has been for around 5 years now i used to take epilin medication and i was recently taken off the medication as i have learnt to control my epilepsy.i was bullied at school and i still get singled out because my epilepsy but i am atchually starting university next year to be a teacher. whatever you do never let people put you down. i am a normal 18 year old i drink i go clubbing i have peicings and tattoos im engaged im a model iv won beauty pagents.
xx
my daughter has epilepsy from the age ov 2 and she is now 10, she has behaviourl problems as well, can that be caused because ov the epilepsy.. many thanks
Hi
my 4yr old son has just been diagnosed with childhood epilepsy with myoclonic absences. thought i would find out information regarding this on here and yes to some degree i have but its not really answering questions that im having as a concerned parent such as his paediatrician said the prognosis was low, in what way? why has he got this? what are the side efects of medication? will he grow out of it? is it going to get worse? how effective are the drugs? etc the phrase can't see the wood for the trees comes to mind! tomorrow i am discussing medication with his paediatrican and neurologist and no doubt starting him on it and i am so anxious about it. have been told they will start him on a low dosage of sodium valproate but possible side effects are weight gain and behavioural problems. has any one else experienced this?
i would really appreciate any comments, experiences, advice from other parents whose child has the same form of epilepsy or from anyone who has in some way experienced this .
kind regards
i do not have epilepsy but i was just going with through the word what it means and i thought it was a like a disease but it is not so i hope that everyone that has got epilepsy i hope you get better and fits or the other stuff you have been saying through your comments so i wish you well and a happy new year to you
Hi,
I have had epilepsy since I was 20, I am now 26 and still find it hard to come to terms with this, They don't know why I have it, the only reason it can be is that I was 3 months premature and had a difficult birth. I take medication twice a day which seems to have kept my seizures under control. Saying this two years after I was diagonosed I was advised to come off my medication to see whether I had grown out of it which I hadn't, I had another seizure, so went back on the medication and told myself I would never come off them - it isn't worth it, especially with having to stop driving etc. Then two years later I had another one, mine seem to be triggered by stress and lack of sleep, I had one in the evening, then the following morning I woke up and had about 7 seizures altogether and had to go to hospital which was a horrible.
Last week was the worst, I had an absence whilst driving and was driving my colleague to a christmas party at the time, she didn't tell me until the following day, she said she asked me 3 times whether I was ok and I didn't respond, which I wish she told me when it happened as that evening I went swimming as I had a bad headache which felt like a hangover headache so thought it may make me feel better to do some exercise. This got worse whilst I was in the pool so came out of the pool and felt like I was going to be sick but couldn't so got changed and went home. When I got outside of the sports centre I realised I had a cut on my hand and toe, which I thought was strange, then when I got home I realised I had two bumps on my head, then the following morning I noticed I had a bruise on my arm and my bum was sore. I must have blacked out whilst I was there, this scares the hell out of me as the not knowing, whereas usually I have someone with me, plus driving normally when I am having an absence, putting mine and her life at risk. This is totally new to me as I have never just blacked out, plus having a headache before, which I usually have one afterwards and not knowing afterwards what has happened as usually my legs ache if I have a fit.
I went to the doctors and felt horrible, I got upset and couldn't explain the way that I was feeling, like I was in a daydream/a daze, I know what is happening around me but just don't feel right. I feel mad when I try to explain to people as no one seems to understand and I feel ashamed of it, hate being different and I try to avoid telling people as feel like look at me different. I don't like the thought of not being able to do what everyone else does, I am stubborn, I have to start telling myself not to get stressed and try to relax or if I haven't slept well one night, which does happen a fair bit then to go into work later to make sure I have a decent sleep. Does anyone else have this problem? I do feel really alone as don't know anyone who has this problem but my problem is that I forget I have this condition and think it won't happen I have it under control, which I dont.
I have to face work tomorrow after all this and I am scared.
i was diagnosed with epilepsy today. i have only had 2 seizures my entire life, one of which occured this morning. i am only 20 so it is a shock but im not entirely sure what it involves. i have been given medication and been told to come back for more tests. i have also been having 'episodes' in which i get a sudden image bursting into my head and then more images flashing through my mind. i have been having these for a while and sometimes after them i feel depressed and cry. however after my last 2 i have felt really happy afterwards and seen everything in a completely different light. if anyone has any information on epilepsy which they think would help then i would appreciate to hear from you. im aware this is an epilepsy site but im not entirely sure what i would be searching for. thanks.
hello,
i have had epilepsy since i was 14 it happened suddenly whilst sleeping in the day. my first seizure lasted for 5 minutes; and i 'swallowd my tongue' as it were. When i was diagnosed with Temporal Lobe Seizure i had never heard of it before; and i thought no-one would want to be my friend and i thought my mum and dad wouldnt want me!! i have now come to terms with my Epilepsy; taking medication daily. I have just recently passed my driving test and waitin to heaar from the job f my dreams working on cruise liners doing massage therapy. my moto is 'there is always someone out there worse of than myself'
thank you
kelly x
i was diagnosed with epilepsy at 13 years old. i was very scared cos i didnt know what was happening to me and i didnt really understand it and i knew nobody with the condition. i would rarely leave the house in case i had a seizure. i started taking epilim as soon as i was diagnosed and now age 30 having epilepsy doesnt bother me at all cos its a part of my life. my advice to anyone who is diagnosed is never think you're life is over because it's not. you just learn to live with it and work round it. your medication controls your epilepsy not your life.
Hi my 3 year old daughter was diagnosed with Nocturnal Focal Seizures about a month ago after having tiny seizures lasting about 10/15 seconds for around 2 years and is just about to start on medication (Tegretol). Its pretty scary knowing shes gonna be on medication but if its gonna help i know its for the best.
My friend has been diagnosed with Epilepsy. He had a fit and they banned him from driving for a year which for him was crippling, his independance in that way was a big thing because he's in the middle of the countryside.
Recently he said he felt the symptoms of an attack coming on but was worried to say anything in case people took the mick out of him and worst of all refused to tell the doctors in case they ban him from driving for longer. Not really sure what to do. It worries me the way he doesn't talk about things like this, he thinks it makes him weak or some BS. Help?
Hi,
My son Alex started having fits at 11 months old. Paediatrics told us these were febrile convulsions and he would outgrow them by the age of 6yrs. His fits come in clusters of four or five and then he may go 12 - 18 months without any at all. Each time we were lulled into the false sense of security that he must of outgrown them, then off he went again. By the time he reached six, they were happening every ten days, sometimes twice in a day or back to back seizures. He had many many appointments, eventually the neurologist confirmed that he was epileptic. Alex s seizures are linked to his sleep and so happen during sleep or as he wakes. He is probably the only 6 year old I know who has a baby monitor in his bedroom but I dont care, I can hear him scream out at the onset of his fit.
I have looked into the sensor mats that go under the mattress but these are costly and anyway over the last six years I have got used to sleeping with one eye open! His seizures are now less frequent due to his medication and less severe. Alex is also Autistic spectrum. Sometimes its difficult to determine how much is the autism and how much is the epilepsy as regards the blank stares. There is help out there but as with anything you have to stamp your feet to be listened to, he now has a statement and full time 1-1 support in school. I hope this gives some hope to mums whose children are similar.. keep going.
Hello there,
I've just seen your message on the Epilepsy Action website. I thought I'd reply as I also developed Epilepsy as a teenager, a couple of years older than your daughter. I am now 32 and I'm absolutely fine and lead a normal life, with the help of a tablet once a day.
Here's what happened to me: I had a few seizures over about a 6-month period. After that I was referred to a neurologist at the local hospital who did a load of different tests. None of these were terrible, some of the machines looked a bit funny but it isn't anything to be scared of. What I had done was:
Blood tests
A heart-rate monitor (I had to wear a monitor that recorded my heart rate for a 24-hour period, it wasn't uncomfortable I just had a couple of little wires stuck to my chest with tape a bit like sticking plasters for the day and they were connected to something about the size of a personal stereo which I clipped onto my belt for the day)
An EEG (they stick a load of wires to your head to measure your brain waves and then do various things like putting flashing lights in front of you to see if you are sensitive to flashing lights, and various other things, it's a bit odd but not at all uncomfortable)
An MRI scan (you have to lie very still on a bed that slides into a tunnel-type thing that then records a 3D picture of your brain, the only difficult thing about this is keeping still for what seems like ages, though it is probably only a few minutes in reality).
I was diagnosed with Juvenile Myoclonic Epilepsy. There is more information about this here: http://www.epilepsy.org.uk/info/juvenile.html
The good news is that after being diagnosed I was put onto medication. It took a little while to find the right medication and dose but after a few months it was all sorted. (I take Epilim Chrono but other things suit other people apparently). I take one tablet per day and it completely controls the seizures and I have had none ever since (nearly 20 years now). Since then, I have led a perfectly normal life. I can go swimming if I want to, I passed all my GCSEs and A-levels, got a degree and then went on to do a PhD and now I am married and work as a research scientist. I can drive as well, because my epilepsy is fully controlled (you have to tell the DVLA you have it but if it is under control you can drive).
The only side effect of the tablets I take is that they increase your appetite, so you have to have a lot of willpower not to eat too much (this is difficult to start with but you get used to it). However I think there are lots of alternative tablets that don't have this effect, so it may be that one of the alternatives will work for your daughter.
I hope that your GP has referred your daughter to a good neurologist at the local hospital and that they are sorting things out for her too. As I say, I have been able to lead a perfectly normal life and many other people with epilepsy do too. I think it is very likely that they will be able to find a treatment that suits your daughter and helps her to lead a normal life just like all her friends. I know things must be really scary for you both at the moment (it was for me and my family) but it will be OK.
Best wishes
Lucy
hi my name is kerry and i have a 6yr old boy with autisum, adhd, when he was 3yrs he had his first fit which lasted for 25mins, this really shocked me as nothing like this has happened before, sice then he has had 7fits nnot as long but long enough, the others were about 6-8 mins long, he had eeg which said he had epilepsey and now on medication for this, but only 2days ago he had one at school which lasted 14mins, it is not nice seeing someone go through that let alone your own child, my son does not talk so it hard to find out anything, like signs before, i am still waiting for him to have a brain scan done so i hope this is soon, i no it dont change nothing but they still want to do it, if anyone knows where i can get an alam for this to let me know for my son when he in bed i would be most gratful, i not sure as yet if the nhs can give you one for now, thank you for reading thisx
Hi :)
Just would like to add a comment...I have just been diagnosed with Temperol Lobe Epilepsy i used to have seizures when i was younger. I stopped taking my medication (100mg tegretol) when i wanted to learn to drive without speaking to my GP as i hadnt had a fit in 10 years so i assumed i had 'grown out of them'. Anyway in May of this year I went to blackpool with my hubby and some friends and came back and had 2 seizures one at home and one in hospital...tiredness and alcohol triggered them ...i am now back on medication (Keppra and Propynol I used to take tegretol) and have had to give up my driving liscense which i got in 2007. I have been told if i stay fit free for a year i can drive again but i will need to stay on the medication maybe for the rest of my life...which i dont mind doing if it means i can get my liscense back and not risk having another seizure. Assuming isnt always the best thing :(