What is epilepsy?
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 which starves the brain of oxygen; 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 an interview today with epilepsy scotland. Reading this wedsite was very useful, however i just hope the information i have just read stays in my mind.
im 17 year old i have epilepsy since i was 5 and it hard to deal with it having to take tables everyday and not knowing when your going to take a fit and its worring cause i dont like telling people i have epilespy i know i should but a dont like it cause people ack drifferent around you cause of it and a dont want that but when a had to tell them they didnt act different to me at all, when i got told i had epilepsy i didnt know it was ma mum told me what it was about when a was 8 and i thought about websites and a come across this one and it help me to know what the contusion is all about
thank you
I had epilepsy from being 2 up until 16, i had temperol lobe epilepsy, it was caused by a scar in my brain, i had an operation, on 30th sept 1998, after going through nearly 2 years of tests to see if i was aloud it, now im 27 and i havent had a seizure since the operation. it was the scaryist thing ive ever had done, but it was the best aswell.
I Have Had Epilepsy since i was born with a difficult Birth, i grew out of it when i was 13, im now 16.
epilepsy caused me to have absences, very rearly did i have a fit,
these absences caused me to go bind/ death for 3 to 4 minuetes,
i have never met anyones with this kind of epilepsy... every one else has fits.
if you have had the same cud u let me kno please
x
x
Hazel, 16, wisbech
I am carer of a person who has Grand Mal seizures, the original cause of which was severe blows to the head. The fits are often preceded by violent headaches. Her headaches are often started or made much worse by strip lights such as in shops and worst of all - in hospitals ! ! Now she is finding that the new energy saving light bulbs are having the same effect.
Are other epilepsy sufferers having the same or a similar problem / experience as I believe strip lights are a common cause of epileptic attacks ?
Does anyone know if the light bulb designers / manufacturers are aware of this ? Are any bulbs being developed that will not have this effect ?
My wife is an Epilepsy patient since more than 7 years. She is 27 now. She has recently joined a job. since than she has some behavior issues. She gets angry, restless, talks senseless some times, she is also facing issues prioritizing things/matters. I think she is not able to manage her sleep and job. I'm not willing to risk her health over job. May be she is stressed and finding difficulties to stay in control and focused. We are also planning to go for a child in some months. Please suggest.
Regards,
im nearly 28 ,and i have had epilepsy since i was 2 ,from the age of 2 up to 16 i had fits by going up face to face to the t.v,which being a young child was hard to control it,also things like computers,also strobe lights and computer games,then at 16 when doing my exams,i started have fits in my sleep,which according to specialists was set of by stress ,lack of sleep,im not aware that i will have a fit as i am asleep,but i will wake up with a bashing head ache,and sometimes injurys if it was a bad fit,i take lamictal which helps keep it under control but obviously doesnt stop it,i have a 5 year old child,who has learnt what to do if i have a fit,and am 4 and a half months pregnant,due to being pregnant my fits have been triggered of more frequently,it is imbarressing to discuss some things that you do through having a fit,but you should'nt for one second feel ashamed or different to anyone else,all the best to everyone who deals with epilepsy.
I am 18 and have epilepsy from the age of 5. I suffer from grand mal and pal mal seizures and on 400mg of tablets this site has provided me with knowledge I need for factors affecting my life.
thank you
Bethan
My daughter of 12 has recently started having seizuers - out of the blue. Perfectly normal until now - a competitive swimmer and can no longer swim. No heredity. What could be her prognosis? Not happy with services available - general lack of information. Even your site doesnot help, All people seem to be epileptic from birth. Not my daughter. Need help cant cope - could risk losing my job....
Hi Hazel
Im 29 and have epilepsy, it has been controlled for many years.
I had a grand mal seizure when I was 7(and a number of small seizure before that.)Then until I was about 18 I suffered very badly from absences. I would often miss a full class at school or college and was unaware of how much this happened, I found that being in class room situations made these worse although I would often have absences and auras in other situations. Mine seemed to be triggered by noise and i would be aware that voices around me would suddenly become distant and gradually I wouldnt be able to hear anything and my vision went. I wouldnt come out of this until I was touched, my friends or teacher would have to say my name a number of times and tap me on the shoulder. Even then it took a while to come out of the absence and it was a feeling of all of a sudden I was back in myself and the room. When they were saying my name it would gradually get louder and my vision would come back.
Do you not suffer from any absences anymore?
Take Care
Vic x
Hi D,
Im 29 and have controlled epilepsy. My parents started to notice something was wrong with me when I was about 5, my eyes would roll back when watching tv or when I was just sitting, my arms and face would twitch, until then nothing had been wrong. I suffered a grand mal seizure when I was 7 whilst asleep and then had absences quite often. I do think it is best to keep pushing with the hospital doctors to get the right medication and the epilepsy nurses helped alot. I still see one now even though my epilepsy is controlled and has been since I was about 18. One thing I have noticed is that since a very young age I have suffered from depression. I believe this is part of epilepsy. Not the fact that I have epilepsy but part of it. Does your daughter suffer from this at all? What medication has she been prescribed? Does she have fits often?while asleep or awake? Does she suffer from absences?( I found I suffered these much more when in class room situations.) I was a very creative child and me and my parents found that when I was having to concentrate on things where it was me doing something on my own or in a small group I didnt have absences so much. They seemed to be triggered more in classroom situations when I had to sit and listen and noise seemed to trigger my absences.
Even now it is hard to understand but I missed alot of my childhood and education due to epilepsy. I dont have alot of memory from before the age of 16, whether this is due to the medication Im unsure.
I know its hard but try to stay positive, she will get the treatment she needs. I hope you are well.
Take Care
Vic x
My son showed no sign until 2 years of age.............he then went 12 years and at the onset of puberty....all hell broke loose. For three years or more we could not control the seizures, then I found out that he was not having epileptic seizures, but "withdrawal" seizures because he had been snatched on and off of so many seizure medications.
Finally, he was placed on a combination of Depakote and Lamictal...........he was like a zombie at first, he currently struggles with depression, but is controlled. I often wonder about the long-term side effects of taking the high dosage of combination drugs........
I have known people to never even have a seizure until the age of 23 or 37........
Hi,
I work in the design of the control gear for fluorescent lighting. My first instinct would be to point my finger at fluorescent lighting operating at the mains frequency, 50Hz (stroboscopic effect). Most new installations are fitted with High Frequency control gear, which eliminates this. Unfortunatly the older technology is still out there in vast quantities and is still availible for retrofit, more cheaply. It will take a very long time for the older technology to be phased out. The new energy saving lamps should mostly be high frequency and the quality branded products such as Philips, Osram, GE will be of a design wilth no stroboscoipic effects. However the very cheap parts on the shelves will be our old flickery friends.
There perhaps is another avenue of study. Stroboscopic effect of fluoresent tubes are well noted and hopefully will eventually become a thing of the past for economic/effeciency reasons if nothing else. However the type of light produced by fluorescence is hardly natural and the RED/GREEN/BLUE "peaks" may also be some kind of trigger. I will endeavour to dig a bit more on this.
Another point of note, I have worked with fluorescent lamps all my working life (18 years) and have only recently had my first seizure (which I think is mostly down to bad eating habits!) go figure.
Hazel,
I used to have abscence siezures sounding very similar to yours, where I would just 'switch off' for a couple of minutes....... this started for me after I'd had a brain operation to remove a benign tumour (non-cancerous cyst) when I was aged 27.
I totally understand how scary it can be, and how you might feel 'as if you are not normal' etc.... plus how it frightens your own family and friends too as they worry about you. I'm really pleased for you that you were able to 'grow out' of your abscence seizures not having them any more though - (which is not too unusual as far as I am aware) - and I do hope it stays that way for you. Please try to keep a positive frame of mind now .
It took me quite a few years trying different drugs, until the doctors found the right ones to control my 'abscences' for me. It wasn't easy to start, but well worth it because since we did find the right mix I am free of seizures too while on these meds. I've held down a good job for over 25 years, I can drive, and have seen my children grow into young adults. I do feel 'normal' again ! And It's really no big deal to have to take these tablets in the morning and at night.
I think we have both been lucky that our type of epilepsy ( though different) is minor by comparison to some other types, plus ours is now 'controlled'. I think it helps to remember that on those 'difficult days' !
Take care,
Paul, 48,
Newcastle upon Tyne
hi hazel,
I am 21 and found out that i had epilepsy at 20, i still have it now. I have absences like you did, but i don't go blind or anything like that. I go into a deep stare and stop what i'm doing, i can hear everything around me but can not talk and sometimes my hand and head shake a little. I am currently on medication for it and it seems to be reducing the amount i have. I also have a twin sister who had also just found out that she may have the same type of epilepsy.
Sarah x
I have a 14 year old boy how has autizim and within the last few month has had 3 convulsion and been atmitted to hospital. He has been diagnozed with late onset of Febrile convulsion. If anybody is in the same position I would like your comments.
Hi,
Im 28 and have had epiepsy for ten years. To be honest I have to admit I still dont know alot about it, I have grand mal seizures but they are pretty much in control.
I have just been reading about your abscenes. I just wondered if you or anyone else have an abscence that last just a second. It jut lasts a second as though someone has clicked there fingers and just paused life for probably a fraction of a second. I just have these now and again but they do scare me
Thanks
my name is kiran and i was recently Diagnosed as being epileptic since 3 months, i am 20 years old and don’t think that i am epileptic because there is nothing wrong with my body or my brain. I am taking tables every day to control the epilepsy but that isn’t helping at all.
hi my name is kirk i have been suffering from epilepsy for 20 years and over the past years as i have go older they have chaged when i started having them from the age of 2 years old they were not very controllable i would go to school and be very tired and drousy and end up having around about 3 to 4 seizers a day. as time went on and i got older my seizers started to change i would run climb and jump i am now 21 years old and my seizers have changed totally before i would have up to about 50 to 80 in just 1 year now i have figured that by keeping fit i now have around about 8 in a year. I don't feel so tyred all the time
Hazel i am nearly 40 and i have this kind of epilepsy, i also get light headed and somedays wake up feeling confused and feel like that all day (making it hard to concentrate) but i dont have fits either, the absences you experiance are called Petit Mal or Absence seizures look on the net and your find loads of info on it
Sylv
Hi. i m 27 years old now and I started getting epilepsy around the age of 15. I had fits every night for some time, so i became a medicational treatment. The first one was way to strong for me, and I started acting and thinking in strange ways, so i had to change treatment. I can't remember much from that time. The second medicational treatment went better. No side effects and no more fits. Around the age of 18 i think I got taken of the treatment, as the doctor said I would not have epilepsy anymore. I remember him telling me those news with an expression of not understanding on his face and being surprised about it. I didn't have a fit since then, maybe one or two once, but i m not to sure about it because i always had fits over night, so i m not sure if it was a dream or not.
Now i have a few questions which come up. It says on this page and on others that there is no cure for epilepsy. How come mine just disappeared?
My second question is. Since i ve had epilepsy and been on the first treatment i get really bad depressions every now and then, and over the years they seam to happen more often. Can these depressions be related to the epilepsy medicine i had to take in? I want to get rid of those depressions, but whithout having to take medication. Is that possible?
thanks
would like 2 comment on the one whos daughter who started takin fits a 12. i started takin fits a 8 no reason either. i had been playin the playstation one night 4 hours woke the nxt mornin went downstairs and took my 1st fit does she play consoles?
I have a soon that has absences on a daily bases.He is now 9 and was diagnosed when he was 5 after years of batteling.He has progressed to seizures aswell but the loss of time when the absences acure is what he gets most annoyed with.
I was doing a school project on epilepsy and i found this website really useful. Epilepsy must be horrible to have and i know my cousin and auntie have. it must be really scary. I feel for people that have epliepsy, but your no different to anybody else. Speak up!!!!! Thanks again!! luv em xxx
hi, my name is kellie and i was diagnosed with temporal lobe epilepsy when i was 19. as you can well imagine at that age it was parties, nightclubs and alcohol. not EEG's, neurologists and medication.
with my kind of TLE, i go into a fit of rage. my seizure is likened to a volcano, from the onset of the rumbling in the earth to the almighty ripsnorting eruption that eradicates and destroys all in its path. do i sound dramatic? i guess but it was a very hard thing to understand and even more so explain to others. thats how i came up with the volcano analogy. i lost most of my friends at the time, as for an outsider it looked as though i was having the tantrum of the century.
a side effect to having this type of epilepsy is clinical depression. because it affects the part of the brain that controls your emotions, that part of my brain is damaged as well. i think that is the hardest part to deal withm the depression can be more debilitating than the epilepsy. i was prescribed carbamazapime at 19 and also effexor just recently, of which both do their jobs, i am 37 now so thats not bad going
i have 20 month old twin boys and i watch and study them for any sign that they may get this as well.
i have never spoken to or met anyone that has the same epilepsy as me. i think it would be awesome to finally hear that someone else has experienced what i have. no longer would i have to search my brain trying to find the words to explain what happens to me emotionally, mentally and physically when i have a seizure.
to everyone who has been recently diagnosed or who is just learning to deal with it... it does get better, and we are as normal as the next person (sometimes i think i am the only normal one :o)
Hi Hazel,
My epilepsy started when I was about your daughter's age, didn't know what the strange feeling was to start with, but just got used to it.(didn't tell anyone) It wasn't till I had a grand mal fit at 20 that I was diagnosed. I was always certain my epilepsy was related to my hormones.
I hasten to add that I drive, have had 2 wonderful children, now 25 and 23 and continue to have a fantastic life, despite the initial do not bath alone, carry kettles of water, etc. prognosis.
My Phenytoin has done me proud, I have gone through the menopause (early, but with no dramas to my epilepsy)
My daughter has epilepsy (totally different to mine so not inherited, which amazed our neurologist) she is the 23 year old and like me, once she was sorted on the right tablet, drives and lives life to the full.
Guess what I am saying is...despite the terror of the diagnosis, life can be good with epilepsy.
I hope your daughter's epilepsy gets settled on drugs and your lives settle down.
i have a 3year old son who started having seizures just after his first birthday,it started with him constantly screaming franticly for about 2wks,then the seizurez started when he fits he will fit allday,every 2-3 hrs he'll av another,he is constantly in hospital.before his screaming started he was perfectly normal.from the first seizure his development as got worser and worser,and now im told he is autistic.since the seizures he comes in and out of reality constantly throughthe day,he still screams franticly and cant talk .his development isat a 6month old babys standards.i cope well with the fits considerin i neva seen one before him.thescreamin is a niightmareand that is where i struggle,plus he's up alnight.if anybody is experiencing simular things or nows what could help,please reply.
for the last year i have been having a constant migraine type headache and dizzy spells, i also am experiencing what the doctor thinks is absences and i have an involuntury spasm/twitch ( feels like an electric shock is going through me). i have had blood tests and they came back clear and my gp is now sending my to a neurologist at the end of this month. I dont know wether im epileptic or not although it is in our family and it would explain all of my symtoms, i was just curious to what anyone else thought about my symptoms?.
i have a friend who is epileptic and i show most of the symptoms she does, ie the absence, the consant headache and fuzzy head. im also quite often tired and have no energy.
has anyone else experienced this?
I was told i had absense epilepsy when i was like, 6 (although i didn't really understand it), and usually i had no idea what was happening around me during one of my ''absenses''. It usually last like 3-5 minutes and i used to go in daydreams,almost like i was asleep with my eyes open.
And then i used to get embarressed about people in my class knowing cause some of them were horrible about things like that. and only 3 of my friends knew.
But when I was 13 i was given the all clear :D
And i was told there was always a chance it could come back ):
But it hasn't for 2 years :D
x
Hi,
You're not alone. Our son started having them when he was 12. His first one was was at our friends, when their son was messing around with a strobe disco light. That was just over a year ago and he has had probably getting on for 10 since. In fact he had one today when he was at a local football match, which is why I was browsing this site; the specialist wants him to take medication and I was researching the side effects etc.
We really hope he'll grow out of it. It's reassuring to know he's not the only one. I do wonder if this all would have happened if he'd not been playing with that light, but we'll probably never know.
Also no heredity factor.
Anyway, good luck with your daughter.
Regards,
Andy.
hi, i am 23 i have had epilepsy since i was sixteen my type of epilepsy is tonic clonic seizures they are really bad i go blue have difficulty breathing and it is very hard to come out of a fit etc. most of the time i have a fit when im on my own. im a single parent have a four year old daughter i have had a fit infront of her and i know it scares her i feel really guilty because she has witnessed this. i have had scans eeg, cct and a mri scans and it show that every thing activity in my brain is normal although when i had the mri it showed that i have a scar on my brain. i dont know what this and what this is all about. when i go to see my neouologist its the same thing all the time. i've asked for scans to be done again doctors wont do it. i am on allsorts of medication lamital, keppra,clobazam and i am on the highest does of all tablets. when a fit occurs i would have five or so in a matter of hours of eachother it really scary. i dont no what to do with my epilepsy i need the help that im entitled to doctors wont give me it. doctors tell me it could be down to stress and my periods which ive been put on the pill and have not to take any periods havent had one in two years. i dont believe that is the proplem. please help. thank you catherine.
Hi Catherine,
Im 24 and im getting wierd moments( blanks, twitches, eyes rolling and constant headache) im still waiting to see the neurologist. My gp didnt believe me when i said there was something wrong and it was only that i had an appointment with a different gp that this was flagged up.
I also have a friend who like you has had all the mri, eeg, ct scans, sleep deprivation tests the lot and they still cant find the cause of her epilepsy. She keeps going back to the doctors and says she will untill they make an effort to find out the cause as she is on lots of tablets like you are.
My suggestion is that if it disrupts your life and that of your daughter i would keep pushing the doctors/ neurologist to do something because there has to be something they can do!! like my friend I think that pressuring and pestering them is the only way you will get what you need.
hope all goes well for you
Krish xxxx
This is all new to me I’ve just started a really good relationship with someone that i have known for a long time I new he had epilepsy from the moment we met because he told me I never thought anything of it i just treated him the same and didn’t talk about it. i know that there are different types of epilepsy and i dont no which type he has but the other day he had a seizure when we were watching a film and i had no idea what to do I have been told by some people to just leave him alone and when he comes out of it he'll just go to sleep ( which he did) and to just keep an eye on him and just make sure that he’s breathing ok. I’ve spent every night with him for the past 3 weeks and he’s been fine apart from the last 2 day where he’s had 3 seizers.
can anyone please help me to help him and understand.
hi, i can kind of understand how you feel i was in an accident when i was about 14 yrs old and after this i wasnt having fits straight away but i kept getting headaches etc i kept on at the doctors and they did not want to do anything i then had my first fit and was told after all these years that i have epilepsy and was told to stop driving.
my advice is to keep pushing at the doctors or get a second opinion cause i went through years of hell till i got diagnosed
hi im 14 years of age and from about 6 months ago i started having twitches then they turned into fit and have just now discovered that i am epileptic and i get really angry about this and im on 500mg epilim twice a day it still isnt helping im still having fits this website has made me feel alot better thanks alot lee
Hi my 9 year old daughter has just been identified as having epilepsy.I am finding it difficult to cope with, any advice would be gratefully recieved.
My daughter is 9 & has started to have seizures too. Lack of information is driving me crazy. We will have to wait months for her scan, In the meantime her Dad & I are trying to make her life as normal as possible.Chrissie
Chrissie. My son has recently been diagnosed with epilepsy. He is aged 8. He had his first seizure in December (first we were aware of that is). They all happen at night about 2 hours after going to his bed.
One of the critical parts of his diagnosis, rather than an EEG scan, was that on advice from our Consultant we kept a Camcorder to hand. I videod 3 seizures in one week. I took the video to our hospital, and by appointment at very short notice was seen by a senior eplilepy nurse and a consultant. We reveiwed the tape together and the diagnosis was confirmed there and then. He was prescribed Carbamazopin that day (starting at 100mg - half a tablet) and he has been almost seizure free for 2 weeks (apart from one short 30 second event). He had an MRI scan completed within 2 weeks of seeing Consultant, and thankfully that came back entirely normal.
Using a camcorder to record the seziures does take some inner strength, as it feels somewhat strange to do. However it sped up the diagnosis by many months in my opinion, and the medical staff find it almost as informative as an EEG scan.
My advice is to be the 'squeaky wheel' in your local health system, in a constructive and informative way, gather information (written down, or video recorded, of everything you notice) and get it to your Doctor/Consultant a.s.a.p.. Every experience I have had so far indicates that the medical profession do not want to see children suffer but they need the right medical evidence before they can proceed with treatments.
Be strong - you are not alone.
Hi
I had a fall which lead to a subdural haematoma in July 08. Everything was fine until I had a series of fits, the last one was in August 08. I was diagnosed with epilepsy and started on Phenytoin which didn't suit me. I have also become depressed about having my driving licence revoked and the loss of freedom. I also feel very guilty about feeling down over such a trivial thing when I read other people's stories and who are in a much worse position than me. I am now on Keppra and Phenytoin and an anti-depressent and hopefully will be weened off Phenytoin in 3 months or so. This website is so helpful I have joined EP and would say keep up the good work.
My daughter, now 15 years old, has been having Complex, Partial Seizures for two and half years. The paediatrician she was under was adament that she was having anxiety attacks, and treated her with anti- depressants for 2 years. I eventually took her to another hospital, as she was becoming confused and disorientated with memory loss. My daughter was then referred to Great Ormond St Hospital, and saw a Neurologist, and a psychiatrist, and was eventually diagnosed with Temporal Lobe Epilepsy. She is now receiving the correct medication, but her memory loss may be permanent. If you think your child has a form of Epilepsy, get a second opinion. G.P's and Paeditricians, are not always reliable!
Hi everyone, I just wanted to say thank you for all of the helpful information. It's considerate due to the fact that my boyfriend also has eplilepsy but doesn't want to talk about it much even though I've known him for 7 years and have witnessed him having a seizure. This information really helped. Thanks again! Janey
I found this really useful, my boyfriend has Epilepsy and I dont know much about it. After reading this I gained a lot of information about it :)
Hello Chrissie,
I feel for you and your family, and I hope this reply will be of some encouragement to you.
Our daughter is now 15, and has been diagnosed with epilepsy since the age of 5, after originally being told she was probably suffering from nightmares!!
Throughout her illness we have found that the trick is to maintain good lines of communication between ourselves, our daughter, and all the Dr's etc involved in her care. At first it was almost like " Oh your daughter has this illness, now off you go and deal with it!" We cannot really blame anyone particularly for this, especially not the GP or Paediatrician as they are not specialised in one area of medicine. There was slightly more information given by the specialist Drs and the neurosurgeon, but we did find it very useful to talk to one of the paediatric nurses in the clinic. She was able to give us advice on support groups, and where to obtain infomation leaflets etc. We did make a lot of the running ourselves though.
Waiting for scans and tests can be very frustrating, but please be reassured that the medical profession would not do anything to jeapordize the health of your daughter, but if you really are concerned that things are taking a long time, then please make sure you contact someone.
You need to be sure to ask questions, and to express your concerns, otherwise the people caring for your daughter may wrongly assume that you are happy with what you are being told.
You are doing right by trying to keep things as normal as you can for your daughter, however, ensure that you remain honest and open with her, and most of all remain positive, although this may seem difficult at times.
We have had some very difficult times with our daughter over the years, and her treatment is still ongoing, but she is now learning to accept her condition, and to adjust her own life to accomodate it. Things do take time, but stay positive, and maintain your communication. Good Luck
I had epilepsy for a long time befor it was even diagnosed (atleast 3 years) I was put down to be lazey and stupid because I'd blank out and forget what it was I was doing. Sometimes it was that bad from the start of the school lesson to the break for lunch I'd written 4 lines. I was too scared to ask for help so I tryed to hide from everyone.
For me the hardest part was all the other kids stareing at me when I blacked out and them avoiding me because they couldn't understand my illness. I still got alot of questions about my old illness but not semingly getting the answers I so badly need answering.
In the end I had grew out of epilepsy but at the age of 11 I was on an adults dose of medication befor someone started asking questions I was sent to a hospital in Oxford (The Park Hospital) where for the first time in my life I actualy fitted in with sociaty the doctors and nurses there were kind and took the time to listen to what I had to say instead of brushing it under the table.
I hope that epilepsy has been more widley recognised and that doctors are able to treat those with the illness alot better than my treatment.
hi i am 24 and only just been told i have epilepsy i dont have many fits but when i do i black out and then when i come round i have chunks out my mouth and toungh and the next day all my body hurts. i have also had my driving licence taken off me i have 2 young children 1 and 4 so i am finding i hard to cope my partner is great and my familey support me to but it dont stop me feeling down and crying all the time over silly things.
I can not talk about it becouse i fell silly and i also feel like i am left in a grey area with the fits they have changed my life but i still dont think there is any support for people with epilepsy. not that i have found anyway
hi hazel i too have had abscences, i still take tablets but only a mild dose. the actual name is eyelid myclonia with abscences, my eyes would flicker an i would day dream an go deaf/blind. i got diagnosed at 8. im now 27 and expecting my first child and really worried. i didnt have traumatic birth it doesn t run in my family but i hit my head at4 yrs old and ended up in hospital. glad you have grown out of it they said i should by the time im 30 so not long to go i really hopexx
hi, im 27 and have had epilepsy since the age of 9. i used to stare at the tv screen really close, get headaches from the flashing lights passing trees, dark rooms with tv on, i got diagnosed with eyelid myclonia with abscences, which means i could be standing or sitting losing conciousness, my eyelids would flicker, if it was really bad i would have to sleep. my medication made me really drowsy, mumble, not want to get up out of bed, not be able to concentrate at school, i hated taking my medication, i didnt want to tell anyone, i have had 6 grand mal due to not taking my medication properly it made it worse. so now im older i take alow dose and i feel an improvement, shift work i find is not good for me, sleep is so important!! i can get really moody and snap if im not with it and forget what im sayin sometimes. I am 9 weeks pregnant for the first time and really worried, im waitin to see an epilepsy specialist in the next 3 weeks, im on a higher dose of folic acid and waiting for my scan. my epilepsy has not got worse so far, when im tired or stressed this may bring an abscence on so it a worry x x
Hi. Ive Been With My Boyfriend For Four Months But Still Find It Hard Accepting The Fact That He Has Epilepsey And Am Constentaly Worrying That While I Am At School Or At Home He Could Have A Fit And Possibly Die. I Know Its A Thin Chance But After Recently Reading About A Young Man Around His Age Dieing Of A Fit I Have Become Increasingly Worried And Am Looking For Help On This Matter
Hi D
Im a 29 year old male who has suffered from Grand Mal Epilepsy since i've been 5. People can start with fits out of the blue, so dont worry about it. Just make sure she keeps taking her medication, and gets into a good sleep pattern. I know i sounds daft but a routine is important. Make sure she eats reguarly as well. If she does these three things she should be ok, unless her Epilepsy is difficult to control.
Another problem I have had is huge problems with depression. I have had it as long as I can remember, and I believe that it can be present in many people with epilepsy. It can be a bit of a problem, and I bet she is wondering what the hell is going on. When I last had a fit, even though I had had thousands, it still scared me, and after the fits I found I was very down. Almost as though I had let myself and all my family and friends down.
Well thats just some stuff that I thought might help. If you need any more answers please don't hessitate to ask.
Best wishes
Jamie x
hi i have found out i have episey bout 1 year ago and i am 12 and i had a fit in school and i was never told i had fits and i am pretty scared that it will happen again !
x
alice