hello im 23 i first took a fit in 2006 and was sent for a load of tests they told me nothing was wrong and i was told that a healty person once in a life time could take a fit and it wouldnt mean they had epilepsy i had panic attacks everyday for about a year without any treatment then in october 2009 i took a tonic clonic seziure which was horrible which theres no way to descibe it i didnt know who i was or even were i was when i came round then another in november everyday i wake up wonderin if 2day could be the day for another one i have 3 small children which makes my life a constant worry in case i took one and then they would be left alone now im on lamotringe my medication recently got put up to 200mg and i was just wondering how do other women cope with small children and epilespy im constantly panicking hopin i dont take one in front of them not only that its not very nice for a 3yr old to see thanks alot for takin the time to read this message

I was 55 when I was diagnosed. I had been having "episodes" for three years before I had a major seizure in my sleep. My episodes were put down to "my age". Once you reach a certain age that seems to be the answer for everything. I was lucky in as much as when I had the sleep seizure I was ambulanced to hospital and kept in for four hours and after that everything was done speedily. I was seen by a specialist In Epilepsy within days and diagnosed and give medication which has helped enormously. I have the very occasional minor episode. During these I am aware of what is going on but just can't take part and can't talk. It's like I am in a world of my own.......which I am.... I have to see the humour in it or I would scream. I have lost my licence, we lived in the country miles from public transport and have moved back to town which means I now live in walking distance of my children which helps. I continued to work till I retired last year at 60. My epilepsy is controlled and doesn't really affect my quality of life and I know I am "lucky" in that respect. No one has ever been able to explain why I "caught" the illness at the age of 55, but think it may be related to the onset of the menapause.

My wife who is 30 keeps fainting and shakes, 3 times her GP's have called ambulances to take her to hospital, once there she seems to be forgotten. They kept her in overnight recently for tests. The doctor wanted to have a brain trace done, but the consultant said she was not urgent enough to have one done immediatly and that she would have to join the waiting list, this was after about 50 faints in the day she was admited. They discharged her and she hadn't got 40 yards from the ward when she had another one. Thet took her back to the ward, told her to rest for a few minutes, then sent her on her way. This is disgusting, we have a 3 year old son, how do we explain whats happening to him?, how is it affecting him?, he even asked his nan to play fainting!.

Hi I am a 39 year old woman with three young children. I had what is believed to have been my first seizure in Arpil 08, I seem to have simple partial seizures. I would get dizzy, then a memory flashback and a metallic taste in my mouth, then I would get hit with the vertigo where i thought I was going to pass out, I had a few other small ones after that. Went to the Doctors did bloods etc and nothing so was told the next route would be Neuro and I would loose my licience for 12 months. As they had stopped decided to leave it and look after myself better, no fad diets, not too much alcohol and be fit. Which I did and then at the beginning of this october whilst running I had the dizzy nothing else, and then the next day whilst running and calling my dog it all hit me, memory, taste, vertigo I had to sit down and let it pass. I even know what the memory is (an episode from LOST)! So off we went to Neuro who is pretty sure it is epilepsey, just waiting for MRi and EEG now for official diagnoses. I was trying to explain to my husband about how I feel as he is trying but doesnt understand. It is like someone braking into our house and taking my security away from me. I am a very energetic woman, very indepedant, I have to be as my husband goes away for months at a time with work. Now I will loose my independance with my driving licience. I worry what impact this will have on the kids and I now have to decided whether to take medication for something I only get a few times in 18 months, but if I don't I could have a bigger seizure in front of the kids and if I do i may get side affects from the meds. I have given birth 3 times and the last being natural at home, but this scares the hell out of me. The unknown and lack of control I think. I am also now being tested for premenapuasal, eh the big 40 is looking good...not. I would love to talk to other women who have gone or are going through this.

Louise,
I had my first fit when my eldest son was just 10 months old. I had another couple of fits over the next 6 months and was put on carbamazapein tablets (400mg/day). I then found out I was pregnant again (planned) and discussed this in some detail with my doctor. I was advised to take significantly higher doses of folic acid but by then I was already 5 or 6 weeks pregnant - I don't recall what the doses were now - ideally I would have done this before I got pregnant. There is an increased risk of spina bifida etc with my medication and so I had a specialist scan at 20 weeks. Luckily my scan was clear and my second son was born fit and healthy. Incidentally, I had a fit whilst i was carrying him and this caused him no problems. I also went on to have a perfectly normal natural delivery, albeit a bit painful!!
My sons are now 6 & 4. I never stopped taking my meds and the fit I had whilst pregnant was the last one for 4 years - I think my medication was still settling down.
My advice would be talk to your GP or midwife about folic acid supplements
Good luck

Hi,

I'm Kate and I've had epilepsy since I was fourteen. Well, I had my first fit then though we weren't sure what it was. I went to see a neurologist and he said it might not be epilepsy but when I had a fit almost a year later he decided it was. I'm coming up to the six year anniversary of my first fit and the five year anniversary of my second, deciding fit. I'm almost twenty one and though I've had very good care I still completely relate to the fear of lack of control. I'm on a lot of medication and have been helped to learn how to take care of myself but with every fit I get more depressed about it and more scared.

I must admit, I've had very good care though that might be due to having private health-care, I'm shocked at how unhelpful your doctors have been. They should realise how important this issue is, both as a medical history before operations and just for general day-to-day care. There certainly should be a campaign to raise awareness, even just doctor's awareness of how many people this affects and the kinds of things they're going through.

Kate, cambridge

Hi, I sympathise with all the the above posts - the feeling of not being in control and mental 'absence' is horrible. I am 35 and have had myoclonic epilepsy (limb jerking) since I hit puberty. It is extremely frustrating for me, and can be embarrassing as other people do not understand what is happening and can find it quite frightening and upsetting. It is definitely linked to my menstrual cycle, andthe handful of full on seizures I have had have all been at the start of a period. However this has never been picked up by my doctors although i have repeatedly said that I knew it was a main contributing factor. No-one has ever suggested that there was a medication I could take to mitigate the effects of 'the period jerks'! Thanks to the information on this site i will now be asking about this possibility. Good luck to everyone who suffers with this condition, and the best advice I can give is not to be embarrassed - it's not your fault - and to explain the problem to the people around you, so they are not so scared when you have an epileptic episode, and know how to help you.