Women and epilepsy

I live in Australia and I am a 47 year old female. I had my first epileptic siezure approx aged 40. I found your site to be the best down to earth easy to understand site that I have accessed in all this time. Thankyou. No one understands how i feel iam so frightened when i have a siezure i feel like iam going to die its horrible. I think of little kids i dont know how they cope with it. I usually have my siezures immediatly before mensturation & or within first 2 weeks of bleeding. I am a very strong person and i think that is what makes me so afraid the fact that you have no control. After a siezure i sleep for almost 24 hours and it takes me 2-3 days to feel not mixed up in my head. By mixed up I mean memories thought flashes, mixing,up peoples names,.........

I just thought i would write in to say thank you and i will leave you my siezure info I hope one day they can bring out medication to stop it. Then i think be thankful its not Cancer so in a way iam grateful.
Thanks Julie

I had my first seizure when I was 37, although I had had re-curring partial seizures which were put down to 'panic-attacks'. I have mine usually around the beginning of the month just before my periods but have recently had a couple just after. My low blood pressure has just gone ultra low and for a whole week I have felt epileptic which is unusual. It just gets more frightening each time, the lack of control and the fear when you come round having missed 'time'. I have gone from being an independent lawyer to a scared, tierd and dependant individual, worried about what to expect next. I have found the health service totally lacking in knowledge or even interest in my situation with seemingly simple tests being difficult to get. I thought that the health service in this country was good but I have been shocked by the basic lack of testing and common sense.

I see no information on balancing the hormones that seem to be creating the epilepsy? Does that seem too simplistic??? Is there a hormone test?

Adrienne, Scotland

Hi

my name is jo and I work for an insurance company. I have been having seizures since may this year, I am dismayed at te lack of interest the health service has shown, I feel afraid and still don't have a full diagnosis. I Have had 25 seizures in this time, many tests, all inconclusive. I cant be left alone as the medication does not seem to be working, I feel forgotten about and unimportant to the so called specialists. My partner and I have 3 children, one of which is only 2, I don't know what the future holds and my partner is also very worried and stressed.

We have now been forced to go and pay for private consultancy and ironic thing is that it is the same consultant who felt a follow up appointment/ first appointment was not needed........

Has anyone else had this type of experience? My seizures do not seem to be connected with hormones but I have been having a mutitude of seizures, myoclonic jerks and absences, every day. I am coming to the end of my tether. My partner is very suportive and has been a rock, even though he is as scared as I am.

Jo

After reading everyones personal experiences with siezures I can relate to all of them. I was diagnosed with epilepsy at the age of 38, I'm 40 now. I was lucky as my consultant was fantastic and explained to me that epilepsy can ocurr at any age and it is not uncommon. After keeping a diary I found that my siezures occur within the week before my period and at the moment are happening approx every 3 months. I am taking 400mg of Lamotrigine a day, and have been told that I can go up to 500mg, after that it will probably not have any effect and so will have to change medication. My consultant was not surprised about the pattern of my siezures as he said it is not uncommon for them to be linked with the menstrual cycle. However he did say that it is not the cause, but the next step for me will be to take a hormone tablet (sorry didn't ask the name) for 1 week before my period is due along with my other tablets. The only reason I haven't done this already is because the side effects are extreme tiredness. I really understand how how you all feel. The worst for me is that somtimes I am really vacant and I slur my words and so people think I'm drunk. I agree with Sal that there doesn't seem to be any support or services for people with epilepsy.

I too feel like i am going to die and this is the first time i have heard someone echoing my feelings. thanks.

Hi,
I was born with epilepsy but the doctor wasnt sure what kind or when it would start it started when I was 17yrs old at first my parents thought I was just tired and they would take me to my room I would wake up not known where I was or how I got there then finally thats when it came to us maybe thats the start of the seizures I didnt really understand what the doctors were saying to me maybe it would go away in a few days that I just need to eat more or something else but I was wrong.If that wasnt even I found out I was pregnant I was so scared the doctor said I was on the worst meds that you can be on if you get pregnant so of course they wanted me to have a aportion but I am against that I went on with the pregnancy and the father of the baby said I am scared but I will be here for you.Ten months later we had a beatiful baby boy he is now 6yrs old and prefect nothing wrong with him he is actually one of the smartest students in his school. We now have another boy he is 4months old we have been together 8yrs and married for almost 4yrs old.I lope I didnt bore you with this story I just want to let everyone know that you can have a normal life and that there are people that love you and will be there for you

i was diagnosed with epilepsy when i was 19. my 1st child was 10 months old and i was told it was a possibily that the trauma of labour could have triggered it. im now pregnant with 2nd child and have been clear of seizures for 14 yrs but i was told that i will more likely to have a c.section delivery which i was worried about. after reading your page it has put my mind at ease with you saying as long as myself and my baby are ok there is no reason why i shoulnt have a normal labour and delivery. thanx for your good info.

I too developed epilepsy after giving birth to my 1st child. I am currently 8 mths into my 12mths of not driving but have recently learnt that I may have to stop taking my meds if I want to have another child - which would mean stopping driving for at least 6mths or longer if i have another seizure. Reading reports on pregnancy and epilespy I am confused as to what the advice is!?!?

Hi Julie, I have just read your post and I am too going through the same as yourself. It all started off about 3 years ago with me 'feeling out of it' and having strange tastes in my mouth. I carried on like this for over another year and then went to the doctors and tried to explain my symptoms (which was very difficult). The doctor said it sounded like temporal lobe epilepsy and she referred me to the consultant at the hospital. I had an MRI scan and an EEG and both came back normal. The consultant put it down to anxiety and prescribed anti depressants. I am still having these vacant episodes but put it down to anxiety now. Back in September though my partner found me on the bedroom floor, he woke me up and he said that I was slurring my words and was talking nonsense. He phoned the paramedics and I was taken to hospital and kept in overnight. They took my bloods and couldn't find anything wrong so I was referred back to the consultant. I didn't go back to see him though as I knew that the MRI and EEG were normal and felt that he would, again, just put it all down to anxiety. Yesterday though was very frightening, I had a strange feeling of vacancy again at the top of the stairs so I went into the nearest bedroom (my daughter's room) and sat on her bed. The next thing I remember was my partner waking me up and asking me why I was asleep in her bed. I couldn't talk properly and then realised that i'd bitten my tongue very badly. It is still very sore today. I have been reading through a lot of these comments and a lot of the women are saying that it happens when they are due on a period. I am due on a period now. I know I should really go back to the doctors but then i'll have to explain why I didn't go back to see the consultant. Its very frightening.

hi emma

I've had nearly the same symptoms as you for about 10 years, every month a funny taste, visons or da ja vu,and that was it for for years so i just assumed it was a hormonal or anxiety related condition, so i never took it further, up until i was pregnant 6 years ago, and having what must of been a complex partial fit whilst asleep, as all i remember was the paramedics standing around, had all the normal EEG and MRI, nothing showed up, so didnt think anymore of it, just had the awful partial fits once a month, which only lasting 5 seconds but take all day to recover is the norm, so have never taken medication,but in the last 3 months i must of had two big sezuires as i've like u been found once by my daughter and once by my partner in bed, with a bitten tounge, feelin awful and confused not knowing anything, so i rung my local hospital for an appointment and saw the consultant last week,and i'd not been for nearly 5 years , as had never though the need, i'm still feeling out of sorts,hence the awful grammer, so will now take Keppra, once i've plucked up the courage to do so, soooooooo scared of the thought of taking these strong drugs, and then giving up my drivers licence.

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.

hiya my names chantelle im 18 i first started having fits when i was 13 then began having one a week tonic clonic seizures ive never known when ive had one until i wake up but have had only one were i have been aware of the attack it was the scariest thing ive ever experienced thought i was going to die i couldent breath and i felt paralised but my body was shaking i couldent do anything like shout out for help or just screem it was horrible no one herd me. the first tablets they tried me on was epilim i put on alot of weight going from a size 16 to between a 22 and 24 now i have changed medication to lamotragine and back to a size 16 still tho im having fits and not under control i hate it i cnt go out night clubbing and drink as like my other friends and anywere that i sleep ipanic about having an episode because incase anyone sees what happens to me becuase my fits happen when i am asleep id love to hear from anyone that has been in the same situation because u can explain to my mum how i feel but i know they cant understand because they are not going thru it im 18 and i want to be able to drive and be a teenager feel left behind =) thanx for any replys x