What is epilepsy?

hi all i was diagnosed with epilepsy at 18 month old.my fits stopped when i was 9.i recently had 2 fits while on a night out (im now 24).i cant believe after such a long time that they have returned,shock to the system.i had to have a mri scan last week due to my doctors referel after he said i have a weakness in my right side.i cant hold things properly my right arm goes numb all the time i have constant headaches n hate bright lights n my memory is a mess! and im still waiting for my results from the mri. im really worried because i dnt no if its just my epilepsy returning or if thers something else thats wrong.

I had my first seizure at the age of 22 and was diagnosed as having a cavernoma (benign tumour) that had recently hemorrhaged. Since the first one I did not have any more full seizures until 2008. However after the first one, I started having partial seziures which can only be described as occasional weird feelings when walking almost as if your bumping up, also its almost as if my brain cannot function when in a place with a lot of people. Like when walking in a restaurant and sitting down I will have a weird feeling of being pulled down, I cant concentrate as well when in places like restaurants etc and now hate walking in big malls as it kinds of overides my normal planning and thinking part.

After the first seizure I was put on Sodium Sulphate but thought the partial seizures were side effects so stopped taking it, but then when they persisted realized it was something to do with the condition. I was referred to the Neurological Hospital and they decided to take a "wait and see", I really do not understand that, do they wanna wait and see if it causes serious damage and then act, lol. So during this time I did various tests n met a neurologist 2-3 times a year, whats annoying is on each time he would say so your perfectly well and have had no more seizure and I would explain to him the other feelings I had and he did not make any suggestions. The in 2008 I had another full seizure, and was taken into my local hospital for 3 days monitoring. On the first morning as one of the Dr's was doing the ward round he approached me and his little assistant very rudely said "no his not one of yours" but lucky for me this Dr was actually really cool he still decided to take the time to talk to me and ask about my condition and whether I was asymtomatic between 2005 and 2008, and I explained the regular feeling and he said that was probably partial seizures caused by the cavernoma or hemorrhaged stained surrounding tissue and prescribed me with lamictal. Which apart from some really vivid dreams for the first few weeks and seeing peoples face in a weird way for a day or 2 has improved my life a fair bit, although still hate malls and cant concentrate in restaurants etc. Its frustrating that I told my so-called experienced neurologist about those things every time I met him and he never once tried dealing with it, but fortunate that this bright young Dr took the time to speak to me and acted on what I said, I should say went the EXTRA MILE unlike many who just see you, tell you you aint had any full seizures so your OK and then say see u in 5 months etc.

Then went a year without seizures until BANG 9 came in 7 days and scans showed a another hemorrhage. Now the Neurological Hospital decided to act although a year later I am still waiting for a date, in that time have had several MRI's, EEG's, Cognitive tests and everything.
I aint gonna be politically correct about it but epilepsy has xxxxxx my life, although thankfully my seizures are not to frequent , seizures, the fear of having a seizure in public, the effect it has on me in malls and social situations restricts my life. And maybe I am a coward but now I just rather stay at home, and go out with few friends to specific places where it seems to be less e.g cinema, cafe or outdoor places. I find it hard to make new friends and my memory is getting worst as is my thinking and planning skills, I know because my linguistic skills were significantly better when I was younger and and its most noticeable in my second language broken french which again when I was younger was impressively good for someone born and raised in London, now I find myself having to ask my mum for specific words etc which is a bit embarrassing.

Its weird but it feels like I am the only person with this affliction and it makes me feel incomplete and weak and doing the normal things like having a long term relationship and wife n kids seems out of reach

I had my first seizure in my early teens don't know exactly what age, the damn thing plagues me everyday, I always wanted to join the army, this disorder, this thing has ruined my life sometimes I've thought about suicide, you know for sure that if a person had 1 wish they'd wanna be rich, but my wish would be for epilepsy to not exist so me and all people who have it can live happily ever after. This condition this thing! Has cost me many opportunitys that I once wanted and ones I want now. This thing dislocated my shoulder and I don't believe in coincidences on the day of the popes funeral I have convulsions with all the nice extras that comes wiv it I dislocated my shoulder exactly 28 times from this freak of nature and even worse 28 is my lucky number talk about taking the mick I'm sure someone has a voodoo doll on me. I was sectioned for depression, anxiety and self harm but nothing works absolutely nothing I've lost count how many times I've been to the hospital. I play ice hockey and I had a seizure during a match I was so embarrassed I felt so down, so down that I couldn't find a way up there were loads of spectators and cameras, I'm depressed everyday I always have been due to this condition I'm only 23 I have my whole ahead of me according to everybody I have trouble finding work after being made redundant I'm in debt because of this its the same all the time "your a liability" I'm loose canon on the verge of another breakdown I hate it so much I'd sacrifice my life for the damn thing to never exist, everever

Im really worried that I may have epilepsy. I started having severe panic attacks a couple of months ago. Now I can't seem to really sleep, eat, concentrate, things like my vision and hearing fade in and out, and I have twitches in my legs and arms. I have not yet had a fit but all the 'auras' and things people describe about epilepsy are happening.I am on citalopram for the anxiety which seems to help, but most of the other problems are still there. I am extremely depressed and am in danger of failing university. Please help!

I have had epilepsy for several years now, probably caused by repeated head trauma ( I was a Cop for 30 yrs and got bashed up a bit) I now find that computers give me a hard time and I can only sit at one for short times before I get the need to step away.

I also take anti depressants because I get very anxious. To the lady wondering whether she has epilepsy or not, I would say that she needs to see a specialist but in any event it's not a big deal. There are lots of folks with all sorts of medical problems of the brian.

My son who is in hi slate twentieshad a mild head injury and developed severe migraine soon afterwards. Approx 27 months later he beagn taking siezures. Is there a link?

I had my 1st seizure at 17 & had EEG & MRI Scans & found out I had Epilepsy. I couldn't go on holidays with my m8's 'coz of the flash light's in clubs & alcohol didn't help.
I was having 3 'black out's' a week where I used to stare & mumble, I knew I was gonna have one so could tell my family I was 'going'. I had approx 1 fit every 6 weeks & put up with this for about 7 years.
I was on 3 types of medication, 18 tablets a day. Finally I was offered a brain operation at the Walton Centre in Liverpool. I went for it & was in hospital for 10 days. It all went well but it took me weeks at home to get over it.
Thankfully I didn't have another seizure for 4 years so I learnt to drive & felt very independant. I got my own home but I still had to stay on my medication. One day when I was driving I got my feeling that I was gonna black out but luckily I had time to pull over. So it was back again & I sent my licence back. I now know if I'm gonna hav a full on fit which I couldn't tell before so that's good, I just press a buzzer at home if no one's with me & they get intouch with my parents who come straigt round which is great. My black outs aren't as bad as they used to be.
My Specialist has offered me another op to get rid of some of the temporal lobe but I have a baby now & can cope with my seizures so am leaving it for now but at least I know if it gets worse I can have an op again.
My attitude is it could be worse just try your best to get on with life as lifes to short xx

Hi I would like some help if possible.
I have a 13yr daughter who has no medical problems. The being of the year i had a phone call from her school saying that she was behaving strange, when i collected she did not look right i asked her what was wrong and she couldnt speak and was waving her arms about, I took her straight to the dr (across the rd from the school) and they said she was to go straight to hospital. While in hospital she vomited and 5hrs latter when her speach came back she said that she had hit her head in the morning there was no marks on her head, she was kept in overnight and sent home in the morning she didnt remember much of what had happened that day or they day after. she complained of headaches after the incident more than before. On friday 3/12 i picked her up from school and she looked upset and when i asked her what was wrong she started crying this continued for an hour till finally she said thatshe thinks she hit her head again in the morning, she then started to shake and was asking me if i could get her mum, i decide to take her straight to the hospital, while there she vomited quite alot and had a ct scan which came back ok. Again she had no mark on her head she had pain in her eye (she said it was the same place she hit it before) she was monited through the night and sent home in the morning again not remembing anything.
I am confused myself at the moment as I have a friend who has nocturanl epilepsy and he said that there could be a chance that something more has gone on with her and not accutally hit her head or something else could have caused her to hit her head this has been said by other people that i know.
My grandad on my fathers side had epilepsy
Sorry for the length of this post.

I am 31 years old and have been diagnosed with photosensitive epilepsy 12 years ago. It changed my life over night. Epilepsy wasn't so widely known in Germany and I was scared that I was going crazy. Thankfully times change. It turned out that I had my first seizure when I was a baby under one year old caused by a high fever nobody was able to control. My second seizure happened in a badly ventilated darkroom 16 years ago. I assumed that I just fainted due to the fumes and never thought anything of it. In a way I am happy that I never had investigated the true reason of my second seizure at the time as I lived life to the max as a young adult: going to clubs, drinking alcohol, having fun. Having had the experience I don't miss it at all and other people always seem to feel worse for me than I feel for myself when I can't join them at most clubs and parties. Thankfully my seizures are well controlled or happen not very often, roughly every four years. Saying that I do get the odd aura if I am not careful and my most recent seizure happened last weekend. It came on so quickly that I couldn't stop it or explain myself to my boyfriend. However, I managed to say "I am sorry" to him before I passed out. He witnessed my seizure for the very first time. Thankfully he knew what was going on and he made sure that I was able to breathe. The experience gelled us closer together as a couple and I have learned a lot about myself and my seizure. Yes, my life is more restricted compared to that of a 'normal' person but there are also very few things that I can't do. There is always an alternative (and yes, it is not always the most attractive alternative). It is nice when people are worried but they shouldn't worry more than I do and I am very relaxed in my skin. I don't want to feel like I am different but this can't always be avoided. The main thing is to stay positive and enjoy the life you are given.

in the last 3 days i have had 2 fits in the middle of town, does this mean anything????

does anyone have a child with retts or anything with smilar issues.

Having discovered this area of the web site this afternoon, I have read lots of your comments. I only found the site about a week ago. For the first time since being diagnosed with epilepsy, I almost wept at being able to read 'feelings' which were not so very different to mine.
Going to think before coming back to reply to one or two people - so many who appear to have initially been diagnosed with 'panic attacks' as I was for 6 years, it was epilepsy and I had 2 brain tumours - so sad that I had actually been sent to a local Mental Health Unit - who virtually immediately said they were not panic attacks (20 or so a day) but seizures. Thanks GP! The rest is history.
I will be back to seek help and share opinions and outlook!
By the way I am positive so not dangerous to any of you!! I laugh a lot.
Anyone has ghastly side effects from Keppra? Suicide self harming anger etc??? Just a query?

Just found this site and have to say its good to know im not alone !
I had my first grand mal siezure in 2004 at the age of 45 I had a severe headache went into the kitchen to get some pain killers then woke up in hospital wondering why i was there. Aparently i had Collapsed on the floor my body jerking and arms and legs flailing around . Scared the hell out of my wife and kids but they called the ambulance and i was diagnosed epilleptic from that day.

Reading how others here have felt , thought id put my experiences down. having seen the specialist i was put on eppilim 500 chrono twice a day but found it so hard to function , even doing everyday things like making a cuppa was a struggle , I also found i was having more fits luckily i get warning signs so sometimes was able to warn people then get to a safe place.Having said that Ive had major fits while out in town too ,found myself in hospital 4 times as a consequence.

Living with this has become easier though im now on lamotrigine and this seems to keep me fit free although i do get the feeling of a possible onset now and then i find sitting quietly and controlling my breathing seems to help. As others have said its also temperature related if im very hot the symptoms can begin ... feeling the worlds becoming distant and my right side feeling numb then i find going outside sitting quietly and cooling down all helps to stave off the fit.

Once ive had a fit im very disoriented and feel exhuasted often sleeping for 3 to 4 hours after recovering.
Memory loss is another common thing i often forget names of things and sometimes cant find the words im wanting to say.

Ive found that lack of sleep and not eating properly can also cause the symptoms , bad flourescent lighting affects me too ,so all you people wondering should see your doctor and explain the symptoms to them so action can be taken.
There is help out there just take the steps to get it and life will become easier , looking out for the warninjg signs and knowing how to deal with them is the key. Be aware of your body and trust your instincts , thats probably the best advice i can give .

We can beat this thing , takes a little planning and awareness thats all

Hi,
After reading some of the comments here, I was compelled to add my experiences.
My epilepsy was diagnosed at the age of 17, after having my first seizure behind the wheel of the car, luckily just parking it in the school car park and not driving. I was in sixth form at the time. I woke up in a hospital ward, dazed not remembering a thing, bite marks on both sides of my tongue. A headache feeling like my head was in a vice.
Then, I was to have various tests at the hospital to find out what caused it and to confirm the diagnosis. The first test I remember having was to sit in front of a strobe light and see if it was photosensitive - negative. I knew it was to be, as I used to go clubbing with friends all the time. PC monitors never troubled me either. (It's a fact that only 5% are photosensitive).
I am now 38, my epilepsy steadily got worse, having regular partial seizures (blank staring, sometimes with chewing in my mouth), often leading to the full tonic clonic/Grand Mal seizures, falling to the floor with jerking limbs.
I have had to leave University studies twice due to my health and surrendered my driving license.
My present employers, are not understanding to say the least, despite having the "caring" image within their company image, they have no or little disabled employees and tried to sack me at one point due to my epilepsy.
The stress of this, contributing to the seizures, giving the company more excuses to terminate me on health grounds. I fought my corner and kept my job, due to the Disability Discrimination Act 1995.
Other triggers were found to be heat or lack of sleep. If my body got too hot, seizure almost guaranteed.
I have had seizures while playing football and whilst abroad in hot countries.

My epilepsy is drug resistant. I have tried Keppra and Zonisamide - both useless. Epilim, Tegretol and Clobozam. Epilim and Tegretol in controlled release versions being far more effective for complex partial seizures.
After having numerous MRI scans, EEG's and video telemetry, the source of my epilepsy, was found to be within the temperol lobe, damage to the right hippocampus. Caused by febrile seizures in my nursery years, due to high fevers. It came back to haunt me years later. My memory also worsened with every seizure, due to the damage caused neurologically. My confidence hit rock bottom too.
I was almost sectioned in 2008 after having hallucinations whist in Status Epilepticus, after having a prolonged seizure. In my semi consciousness, I was convinced that was my last night and told my wife to prepare for my funeral.
I was offered surgery to remove the damaged Hippocampus, straight after the pre surgical assesments to find the cause and went for it.
That was over two years ago. From having 20-30 huge seizures a year, with side effects from the medication, including slurred speech, slower response times, double vision, memory problems and the mood swings! I kept changing my personality sometimes, with my wife finding it hard to keep up sometimes. I became more emotional too. Now my seizures are down to about two a year. But a lot more stable now. The surgery didn't go according to plan, but glad I did it. Still on medication, but my confidence is back, response times better and no more slurred speech. (If my side effects returned, medication is too high, a simple blood test to determine levels can sort that out). My specialist Sapphire Nurse at the local hospital is great. But will always be greatful to my Neuro surgeon at The National Hospital for Neurology and Neurosurgery in London.

Luckily for me, my wife is really understanding. We are really closer now than ever before. I'm in a cr*ppy job - so what and I have two kids to support, but although they were scared to begin with, running upstairs, hiding in their bedrooms if I was having a seizure, they are more grown up now and beginning to understand.
The only thing I want to do now is get rid of the stupid and unnecessary stigma that goes with Epilepsy. My parents tried to hide me away from friends and relatives, thinking that if they found out, there would be questions, "mickeytaking" and so on. Narrow minded idiots!!!!!

I have just come across this site and its nice to hear that there are people out there like me,
i had my first seizure when i was 9 yrs old they said that it was down to a head injury i had a few months before, i am 32 now and have delt with this all my life but what i find harder to deal with other that the seizures are the days when im so tired that i cant even remember what i did an hour ago and being scared that i could go at any point , does anyone eles get this ? and people dont understand they think im putting it on which upsets me even more , i do take meds for it and it helps i get the fuzzy head more than fits, but being a single mother is so hard having this and trying to explain to my little one when shes old enough to understand what she has to do its not fair that she should have to deal with it aswell

Im 28 years old and was diagnosed at about the age of 16 , i used to be on the school playing field and totaly forget what i was doing ( very scary ) i wouldnt have a clue where i was or what i was doing for a while then it would slowly come back to me, it wasnt until i had an actual fit at the airport one day i got it sorted. Ive have 3 bad seizures since which isnt alot atal, i had my son at 21 and had one then aswell, i was on medication but stopped when my son was 2 bacause i didnt think they made any difference. Ive had alot of stress the last few months with my son and yesterday i had a partial seizure? i knew i felt wierd so grabbed my friend and cant remember nothing for about the next 15 min but she said i looked dazed and just kept asking where we was and what we was doing ....this scares the hell out of me and i am now going to have to go back to the docs...one thing i had which i have never had before is the feeling of da-ja-vu and feeling sick this happened a while after ...very frightening ....

hi everyone my 4 yr old got epilepsy and the docters done tests on her we 2 yr old i some times do not no wot to do for her as i do not no about it some time its like she is not whit it and some day are good so if some one can hlep me to no abit thank you .

i would say, don't be embarrassed abut being epileptic and make sure all your friends/colleagues know how to help you when you have a seizure. talking about your condition is good.

Hi all. My husband has been told he is epileptic after having 4 seizures in the space of 3 weeks. He has to have further tests at a neurology clinic to verify. It is so scary.

I've been epileptic since I had an accident at school at the age of 8 and even though it has had me at all time rock bottom lows when I have suffered from seizures over the years I can honestly say that epilepsy has made me the person I am today and I am truely happy. Epilepsy has taught me to value life and appreciate how lucky I am to have what I have.

My mother was told when I was first diagnosed that I would never leave home or go to university by a nieve nurse and instead she has pushed me to go to uni, travel, work hard and become as independant as I can be. Dont get me wrong, there has been times when I have been knocked down and my body has made me stop... but I have always dusted myself back off as quickly as I can and carried on with a "normal" (whatever that is) life.

In my oppinion, the worst thing you can do is lock yourself away, I know it's hard and your conficende gets shaken beyond all belief, you need to take control of your life and lead as normal life as possible.

If you have no one to turn to websites and organisations like epilespy action can help you to understand the challenges you may face. Stick with them and work with them and epilepsy wont seem like such a huge chunk of your life has been taken away. xxx