hello im at a very confusing point right now....I had a seizure about 15months ago..i lost conciousness and dont really remember much about it....i was under quite a bit of stress at the time and after all the tests coming back as normal put it down to the overload of stress.. i wasnt given any medication and was cleared to drive again after 8months...all has been fine since and i have made alot of changes all for the better..my ife has been more settled in the last 6months than for years before..i have just returned from a holiday with my children and felt tired but relaxed and happy..but on the evening of my return home had a 'strange feeling' that i was able to tell my bf about before ending up on the floor briefly...i put this down to tiredness and wnt to bed..my bf then awoke in the early hours to find me having a massive seizure and once the 'fitting' had finished i was 'out cold' for nearly an hour so he phoned the ambulance..the first i recall of this was on route to hospital where i was confused to say the least..i had another strange feeling that i was able to tell the paramedic but only had afew twitches (unable to control) but stayed concious???..this happened again in the hospital..but after blood being taken an being monitored i was sent home. this has happened 3 more times that im aware of the most recent being about 2 hours ago..i also experienced a strange smell and upset my 8yr old daughter by accusing her of 'stinking' and making her shower and clean her teeth over and over???..sincethis has all happened i feel very confused and 'sketchy' im scared and dont feel safe!! i have phoned the specialist and have been told to wait for an appointment..this is very frutrating as i am a very independant person and dont feel like i am in control of my own body..any advice on how i can 'sort my head/self out' would be much appreciated.

I would like to know the feelings people have just before a seizure and after it. Could you remember? What are they, bad feelings (hate, fear, weakness, etc) or good ones (love, etc)? How about the foam near the mouth, is it anytime present?
Thank you.

my son is twenty years old and last year he had one siezure he was sent for a eeg and it came back that he had epilepsy he was put on medication but im worried incase he had been wrongly diagnosed as luckely he has had no further fits and although he ws put on medication he went from july to december without medication nd he was fit free can thse tets be wrong

Hello Mark
I expect you been given many different medicines to try. I was told there were about 14 different ones and the same one may not suit another. Have you found a local support group where there will be others to talk to?

I was lucky I guess compared to you, I developed epilepy in later life after a brain haemorrhage which I thought was bad enough.

Best wishes

when i had my first sezuire i was nine and mine was all down to a cist i had on my brain. this is what caused my epilepsy. i have generalised sezuires and it is horrible knowing that it could happen at any time. since my first sezuire i had neuro sergery within 6 months and ever since i have had epilepsy. i am now 17 and not able to do as much as my friends.
i am about to sit my a levels and i am faced with the same worries about your exam. Also suffering from panic attacks i have to be extra carefull, so i would recommened that you do what i did at G.C.S.E, go and speak to your doctor and as for a tablet that allows you to relax in your exams. it is mainly persciped for people with these two problems but they wil offer it to you.

Hello my name is mark and I have been living with epilepsy
from a few monthes old I developed a high temperature
which led to a convulsive fit reply if you please.

I am 15 years old & have been epileptic for about a year now.
At first, my epilepsiy scared me because I hated having fits. I then got used to it.
Now, recentley I have been having really bad ones. I have had a fit everyday for about a month.

Last week, my mum picked me up from school & she started driving home (15 mins drive.) While I was in the car; I started having a really bad fit. It was that bad & violent the door actually opended because of my head banging against the door so violentley.
I was basically hanging out of the car (with my seatbelt on) having a fit.
My mum pulled over, pulled me back in & drove me straight to the hospital.
When we got to the hospital I was still having my fit.
A kind man helped her carry me into the hospital, & while they were carrying me I was still having a fit.
I don't remember anything else after that, & I woke up to find my mum & 4 brothers & sister around the hosital bed.
A few hours later I was allowed home. I now have a really bad head & I keep getting headaches.
I don't even know what started my fit off.
My fit lasted for 20 mins. It was the longest I have EVER had a fit.
I wanted to know, is it okay for my fit to be that long?
Also, my mum said while I was having a fit the veins in my neck swelled up & I stopped breathing. Is that normal?
I need all the help I can get, my fits are really stressing me out.
I am in year 10 & have exams soon & I know the exams will stress me out, & things that stress me out make me have fits.
Help me please?:(

Hello :)

Right i've had Epilepsy since the age of 16 (I'm nearly 21 now) I've never been on My own when i've had a Fit but i now live on My own & i had a Fit last week (The worst one i've ever had, i was alone & i bit My Toungue badly)

I did'nt eat for 4 Days as My Toungue was soooo sore! But now i'm craving Milk! I don't normally like Milk... Any reasons why i'm craving Milk after My Fit?

My husband is 57 and he had a brain injury over 5 years ago. This resulted in loss of taste & smell as he had surgery to reduce the brain swelling but no other obvious ill effects. In December he started having seizures. He collapsed in a local supermarket the first time & has since had about 5 other episodes, in one case falling on a bollard & fracturing 2 ribs.
He was admitted to hospital for 24 hours after that (I was away with work at the time) & they ruled out stroke & his heart. After the latest episode where a passer by found him in the street & called an ambulance the A&E staff arranged for him to attend a ward the following week & he saw a neuro consultant who has put him on anti seizure medication. This was an unscheduled visit so the consultant is arranging a proper outpatient appointment for him to do 'some tests'.
Are there any questions we should ask at this visit?
Also has anybody had any experience of seizures so many years after the original head injury?
Any advice or information would be appreciated. Thanks.

I thought I'd write to give anyone who's interested the results of the MRI and EEG that I had done.
I have only now been given the results of both tests which were done over 9 weeks ago.
I have been unable to return to work during this time.
The neurologist phoned me as I got cross with her secretary as to the length of time it was taking to get my results ( the secretary lied and told me they were in the post 2 weeks later still nothing, then she admitted they were still with the Dr )
So I am STILL waiting for the written detailed results. But at least the neurologist called and told me my results were normal.
I am still feeling 'spaced out' but I believe this could be due to stress due to the long wait.
So I've actyally been off work waiting for an MRI, EEG results etc. almost 4 mths.

Hello, I was wondering if anyone could help me. I am a 23 year old female. At the age of 10, I started having funny turns, or how I referred to them as "feelings". These were a feeling of deja vu and feeling strange and I felt very cold all over my body. Whilst I was having these feelings, I was able to describe how I was feeling to my parents and answer questions. They would last anywhere between 30 seconds and 2 minutes. Immediately, the cold would go and I would be left with a feeling of nausea, headaches and immense tiredness (often needing to sleep afterwards). The doctors diagnosed me with a form of petit mal epilepsy and I was heavily medicated on sodium valporate for a number of years, which did not help my feelings, only increasing them. On my worst days I would suffer from 20 + of these feelings. I stopped my medication after a few years when we realised it was not helping. A specialist neurologist did not agree with my GP's diagnosis and instead diagnosed me with vasovagal attacks. They continued until the age of 15, when I began menstruating.
I thought that my feelings were then over until the age of 22, when they began again.
The feelings have not occurred as regularly as when I was younger but coincide with the onset of my period. Several days before, I will have a 'feeling' daily and will then stop once my period has started.
I am confused as to whether I suffer from epilepsy after all, having read some of the previous posts which sounds scarily similar to mine. My question is whether epilepsy can go away and return several years later? Many thanks, Helen Kingsley
Is anyone able to suggest

Was really sorry to hear about the difficulties you are experiencing. On the issue of the school threatening to not allowing you to attend - they are not allowed to do this by law. It is their responsibility to provide a save enviroment for you to learn in. If they continue to take this tack contact with someone from the Disabilty Act (sorry don't know their official title) should be able to varify this for you. Epilepsy Action I'm sure will be able to give you more accurate information. Good luck and don't give up; an education is not something to be given up lightly.

Hi I had felt quite dizzy and had some very very short memory loss like you and some tiredness too. I had a fall at work, although a colleague seems to think I tripped and then regained my balance, although it is all very unclear to me personally. My GP gave me some time off and some pills for my dizzyness. I thought it was a virus I had picked up from my children. Then several months later after a very long and active day I blackout on the stairs of my house. My wife found me getting up slowly. I had hurt my thigh muscle, knee and badly bruised my toes, although I had no recollection of falling down. I got myself to bed as I started shaking as shock set in. After about five minutes my body stopped shaking and I was fine, except for the pain from injuring my leg. I went through my medical insurance and work's doctor, to be refered and had a clear MRI, cardiac echo, ECG resting and 24 hour tape. My EEG was abnormal showing rather subtle independant bi-termporal slow and sharp wave sources from both temporal regions, which was emphasised on my sleep deprived EEG, also labelled abnormal. As no one has witnessed my last proper blackout, the Neurologist cannot diagnose me, as apparently to diagnose epilepsy you need to take the test results and witness accounts of symptoms to do so.
So I am awaiting to hear from the DVLA, if I have another blackout then the Neurologist wants to put me on medication for epiliepsy, but for now I am in limbo! So am I in the clear or not? The neurologist said my results were abnormal BUT could not confirm that I had epilepsy. They say there is obviously something going on, but could not say what! So am I ok or not - I think I may have to refer myself to Neuro centre which I have heard may be able to probe further, thanks J

sorry on my last note i also forgot to say that i am 22!
tanya

I was diagnosed with epilepsy in 1973 - I am now 60.

It doesn't resemble ANYTHING I have ever read about.

When I was younger it took the form of full blown seizures preceded by long periods of 'absence'.

Since I passed menopause, I no longer have seizures but the absences persist. They can start at any time of day and last for the rest of that day. The only way to get rid of them is to go to bed and sleep them off. Its rather as if some one is fading my consciousness in and out. I remember odd occurance for brief periods of time then fade out again. I can speak but am unable to put together coherent sentences. I have no sense of time.

I have been treated on the NHS and privately by a succession of specialists who tell me they've never seen anything like it but who insist that it is definitely epilepsy. I have also been treated by a consultant who took me off medication and believed I had panic attacks - the attack increased from one every fourteen days to once or twice a week.

I currently take Lamictal which is very good but has not eradicated the problem.

In all the years I have had this, I have NEVER had a change of medication suggested by any consultant. Of late, thanks to the Internet, I have been able to keep abreast of advances and then got the sanction of the Consultant of the day. Frankly, its money for old rope.

Hi Ali,
reading your story was a great help to me!
I have not been told I have Epilepsy as yet I'm waiting to see a Neurologist.
I have begun to have some kind of 'seizure' for want of a better word since I had a gereral anaesthetic for a minor op 5 weeks ago.
At first I thought I was having a stroke and it was very, very frightening, so much so that I called for an ambulance.
Tests at the hospital all came back normal and I was sent home.
After this I've had these seizures on and off ever since and been hospitalised three times.
Same result, test normal even a CT scan was normal.
I 'm now waiting to be seen by the Neurologist.

But I feel no one believes my seizures are real, except my family as they know me and know without a doubt that I am not making this up.
Who on earth would?
It's SO embarrassing to get taken by ambulance to the A&E dept. only to be sent home as nothing is seen to be wrong with you, it's hell!
I'm not having a panic attack, nor am I hypoclycemic.
Since that first episode things begin with a ‘spaced out’ feeling almost like a waking dream state.
Then I get a headache usually on one side, and then my body feels strange, I find it hard to hold my weight and I usually get on the floor for fear I may fall or faint, my balance is poor and this poor balance may last for several hours after the seizure is over.
Talking is hard as I feel as though I’m in slow motion I can't always say what I want, and my heart races.
Several times I’ve had visual effects like popping bright lights but the most frightening is if my left arm and hand goes numb or starts to twitch and has shooting pains, and my breathing goes strange, this is what I feel makes me think I’m suffering a stroke.
I always get the urge to go to the loo but I'm not sure if this is a symptom or my reaction to what's happening, perhaps fear.
Coming 'back' from it is gradual and a hour or more after I look back and it's as though it happened to someone else.
I've been crying most of the time since as I feel I'm going mad, I'm at my wits end.
I hope my discription may help anyone else, even though I haven't been diagnosed as an epileptic I think if I am I will be relieved.
I'm pleased you have finaly found an answer !

kind regards

Jane

Hi Cassie

I've just read your note about your bro having the epilepsy and you wishing you could take it away from him and you both being bullied at school because of it. I just want to let you know that I was also bullied at school. The bullying didn't relate to my epilepsy at first but one day a girl was wanting to have a fight with me and I had my first grand mal seizure after 10 yrs without any! So the epilepsy got me out of a fight that I didn't want to have anyway! Very useful! And I think she got a big fright! It did become a subject then for the bullies to use but my usual response to people who make comments about my brain not being normal due to my epilepsy is usually 'at least I've got a brain and had the tests to prove it whereas you haven't!' This usually puts a gobstopper in their mouths and they shut up because realise it's a valid statement!

Like you a am a younger sister and my big sis always looked out for me when I was at school like you do for your bro so keep up the good work and he'll always love you for it like I love my big sis.

Things have only kept improving since I left school even though the epilepsy got a bit worse but that doesn't bother me now I'm not with any bullies.

Rae

hello, im glad i have found other people on this website who are are talking about epilepsy. perhaps some of you can help me, my partner has been epileptic since 10. In his childhood and teens would have attacks day and night, but in his adult life only at night. The thing is that he has two types of seizures in a episode. First the classic convulsing, foaming at the mouth, eyes rolled up, tensing, jerking etc but then he walks around! but hes not concious, hes unresponsive. He walks in circles, bangs in to things, one night he threw himself off the bed, he makes noises like groaning or humming, he contorts he face, its like one of those horrors where a robort goes mad. It really scares me. I havent slept properly in 2 years i have anxiety and have resented him for even its not his fault. I dont understand this second phase he has. Is it normal? im ashamed to say i have run away from him whilst hes walking around in this phase because i think hes going to hurt me. Please help. Gemmaxxx

Hi Cassie,

That must be really horrible for both you and your brother. But I'll say to both of you "Just hang in there". You'll end up leaving school and the people you're there with will, eventually, grow up and they won't tease you.

I've had severe epilepsy for 20 years, I'm now 26. I was bullied at school for being overweight but it was the drugs I was put on that made me gain weight. As soon as I came off them I went down 2-3 clothes sizes!! I was upset at the bullying sure, but you have to try to ignore it. I was quite popular, and had lots of great friends who understood what I was going through. Focus on your friends, not the bullies, they're jealous of you that's all.

As for your brother, he's just 19. I've moved out 3 times from the age of 21 and my epilepsy has got worse but I still left home. I went to Uni and lived in halls, then I lived with a long term boyfriend, and then another boyfriend! But I am just the same, I can't live alone either.

It's extremely frustrating, because you want your own space and to lead a normal life. My friend is a teacher and was grateful it was half-term recently, but I would give anything to work 5 days. But I'm just too ill.

Just try to keep smiling, both of you, and remember that it won't last forever.

Louise

Hi,
This website is absolutely Amazing and has answered a lot of questions for me.
For the past 5 years, I've been having little "episodes", that are like zips of electricity and I can honestly say I feel amazing after wards, I seem to be the reversal of many other individuals. It starts off with an intense feeling of deja-vu which then leads to electricity flowing through my veins and intense heat starting from my head flowing down through my body. At the beginning, I get visions along with the deja-vu. Some of the them are incredibly real. But the main thing that baffled me was the immense feeling of happiness and joy! My brain seems to emit a happy drug that keeps me high for many hours after. It's almost like I see things for the first time, and everything is wonderful. Colours are brighter and everything is crystal clear, like watching a Blu-ray movie. I feel empowered and could take on the world. Very different to what I've read about epilepsy.

I visited my doctor, who was absolutely amazing, and she admitted to never hearing anything like this before, so she referred me to a neurologist. On my first meeting with him, he informed me I had epilepsy. He performed neurological tests on me, and booked me in for an MRI and EEG, but with no test results to back his diagnosis I was a little baffled by his boldness! He then continued to inform me that I was no longer allowed to drive and by law, he would be at liberty to release my notes to the police and DVLA if I was to have an accident. He also discussed putting me on medication. I sat there in compete shock! I couldn't believe what I was hearing. When I challenged him and questioned his prognosis, stating that the test results may come back normal, he still stated I had epilepsy. I have had the tests and I am now awaiting the results.

I have an appointment with my doctor in the next couple of days where I hope to file an official complaint against the neurologist. Reading the stories, where doctors don't take the patients seriously, it seems mine is far too eager to label and file away another patient into the vault...another good job done!

These people have to be challenged, for the greater good of us all. Good luck to everyone having to fight the archaic, dark ages of the NHS. You're not alone in this.

Like many of the other comments posted, we have had some difficulty in getting people to listen to us. My son is 4 and is also autistic, he has had every type of seizure including clusters of tonic clonic fits (5 in a row without gaining consciousness), drops to the ground, absences, tonic seizures and complex partial seizures, but we were told we were anxious parents who were overreacting by calling an ambulance. We have tried to get our son referred to a neurologist but keep getting told there is no need, and were also told there is no need for an EEG, but now they suddenly tell us there is a need for one. Our son is having several seizures a day and we still have not been told what type of epilepsy he has or if he has a certain syndrome. I wonder if any other parents are having the same problems or experiences and can give any advice. My son is also having episodes every evening when sleeping, his eyes roll up, he goes completely limp and cannot be woken. Is this a seizure? There are so many thing we do not know the answer to, we feel like we are living on a timebomb all the time, we never know when the next thing is going to happen. Thanks for reading this.

I am 51 years old and had epilepsy between the age of 5 until I was 12 I was discharged from the hospital at 14yrs. Assuming the last few years I have been in the menopause I have had some very weird and odd feelings that remind me of how I used to feel in my childhood. I was aware that I was going to have a fit as a child as I would get a funny feeling come over me, and although these feelings that I get now are not the same, I feel there are some similarities. A few years ago I was prescribed medication for depression which I took for about 3yrs and since coming off this medication these feelings have come about. I have spoken to my GP on many occasions about this but I am constantly told its panic attacks or anxiety. I saw a neurologist privately and had MRI and CT scans and was advised all was ok but I wonder if this has anything to do with hormones and the menopause. Also unfortunately my son who is 25 is having fits and I cant help but feel I have passed this onto him. He is on Keppra and topiramate medication but unfortunately after being free of seizures for 16months has just had 2! He is obviously very depressed about this, he has lost his driving licence, unable to find work etc and its all so depressing!

hi , i was wondering if any body could gie me advice , about two months aho i started having , sezures , or what many people are calling them , fits , spasms , they have ranged from one , to fourteen in a day , and at the beggining they were happening lots , sometimes they go away for a week and then come bck again - i get a very sore head , and my glands , neck feel swollen , i then feel dizzy or in another world , and my neck loses control , fall back , and my whole body convulses , and jerks , sometimes i lose control of water and i cry , but im not upset , also i stop breathing sometimes - after having these in hosptakl , the docs said i just had stress , and literaly threw me out of hospitalk , even whilst having one in teh waitin room , and having one whil leaving ! i was told i would get a neurology appointment in April , 3 months a way !
i went back to my city with my home/ job lost as i worked with kids and my employer fired me when she found out i had this ...i then had many in public , and a friend nearby called an emergency doctor who effered me to a neurologist in my city , howvere he treated me like i jsut wnated attanetion , and have me an egg scan ....it came back normal , despite having 7 fits while hooked up to the machine ...he siad he anticipated this result and no futher action would be taken , as he does not knwo what it is , or how it can be treated , and he think its will ...disappear ....at somepoint ! ive had my whole world tunred upside down by this , and i can honestly say i dont know what to do now , because i still have them , but no one will help me

Hi kelly
Please please do not give up!!
Go with your gut instinct!! I fought with my son's neurologist for years and I was right!Please note that an eeg will only show up an abnormal reading if the patient has had a seizure within 48 hours. After 4 eeg's my son finally had an abnormal reading,i know that sounds terrible but when you know what's wrong with your child but do not have the medical evidence it is so frustrating!!This all took 4 years for the neurologist to finally diagnose epilepsy! Thankfully his epilepsy seems to be settling down, all the very best and do not give up!
Geri

Hi can anyone out there help me?!
I have a 2 year old daughter who is a normal, active little girl. Since march last year she has had numerous ''episodes'' where her eyes flicker from side to side, she looses balance and tends to lean over to her left side. She does not loose conciousness, she becomes distressed and aggitated as she cannot coordinate her movements.
These ''episodes'' so far have lasted between 30 seconds to 5 minutes. She has had an eeg which was normal, and several assessments with the neurologist, who has admitted that he has no idea what it is. She has successfully reached all of her developmental milestones and has presented no other cause for concern.
However, yesterday morning 16/03/09, I was walking with my daughter to take my eldest to school. she started to pull on my left hand, i assumed she didn't want to walk so I picked her up. She wriggled so I put her down and the same thing happened. I few seconds later I noticed that she could n't maintain her balance, she was leaning over to her left side and her eyes were flickering from side to side, I immediately recognised the symptoms. It was very distressing and I immediately took her to the childrens hospital, where she promptly returned to her happy self.
We were seen by a neuro SHO who has referred us back to the professor of neurology. I was told to return home with my daughter and not to worry, ''things like this happen and are never explained''. I asked if my daughter would have an MRI, but was told that wasn't necessary at this time. This is episode number 6!
My daughter has an eeg booked for tomorrow, I feel like i'm going around in circles! I am petrified that something is seriously wrong with my little girl, and no one is prepared to investigate further than an eeg, which has already been done.
If there is anyone out there who has had a similar experience I would love to here from you. I don't know what to do next, other than scream from the roof tops and demand answers, which probably wouldn't help.
Thankyou for taking the time to read this.

Kelly. x