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Women and epilepsy

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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

Submitted by Julie Castrilli on 21 August, 2008 - 05:09.

Hi Julie:

I just want you to know that I understand your fear. I had my first seizure at age 38 in front of my son. I continue to have them and they usually occur around my menstrual cycle too- in fact there is a name for this.

Here is a process I have discovered through therapy to help me deal with my ultra fear of seizures.http://www.emofree.com/ It's a "tapping process" in which you tap on certain accupressure points to help calm yourself. I've done this as I feel a seizure coming on, and it has helped.

I too am (and more was) a very strong person. I was a wildland firefighter and I had my son at home drug free. These somewhat "fearful" experiences combined don't compare to the fear I have of seizures. I don't think unless you've ever experienced a seizure, you can ever know this type of fear. I find this part of the "gap" between understanding seizures with friends, family, etc.

Thanks for sharing your fear with me. I hope it helps you to know someone is out there (me!) whom truly understands what you feel. I know just reading your content helped me.

debbie

Submitted by debbie on 13 October, 2008 - 21:45.

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

Submitted by Adrienne Shepherd on 19 October, 2008 - 01:04.

Hi Adrienne,

I had what would appear to be a seizure on the 15th of October, I'm totlaly lost and confused as to what really happened as I was alone. My daughter phoned the emergencey services when she couldn't get me on the phone and I'm told I was confused and sleepy.

I had bitten my tongue and my jaw was very sore, however all the tests they did were normal?

Iam waiting now for an appointment at the neurology department at my local hospital. My doctor seems to think Iam the wrong age to develop epilepsy, Iam 44... My husband seems to think Iam in some way making this worse for myself by trying to find answers but loosing time is so frightening and I don't think he understands.

Incidently I had my period at the time and was very sressed too, I also had low blood pressure which I have never had problems with before.

Any advice would be welcome

Jules
Scotland

Submitted by Julie Kerr on 25 October, 2008 - 23:33.

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

Submitted by jo willimont on 4 November, 2008 - 01:25.

Dear Adrienne and all the other woman who have posted on here about the apparent lack of interest and concern shown by health care professionals.

I was 21 when first diagnosed with epilepsy and since then I have had no follow-up appointments, no counselling and even had to ask the consultant to call to get my EEG results as I was going to be sent home thinking everything was OK because my head scan had come back normal.

I have spent the last 8 years trying to find out information for myself, with varying results. I am lucky in one respect as it appears that my epilepsy is photosensitive in its nature and as I have done a good job of limiting my contact with flickering lights etc have few seizures. However being diagnosed totally changed the way I had to lead my life and I too went from being an independent, strong young woman to feeling like there is something wrong with me, having to be constantly on my guard and worried that friends and family think I'm making a mountain out of a mole hill.

I have been prescribed medication for other ailments that clearly state they are not recommended for people with a history of epilepsy, but the GP hasn't bothered to check my history. Indeed I had an IUS fitted (a type of coil) for contraceptive purposes and it was only after the procedure had been done that I read that the procedure for fitting these can bring on a seizure - no health professional had asked me about any history of seizures or looked through my records.

I wonder how we can improve the services in this country; counselling, ensuring records or not just written but actually read and support offered for those whose daily lives are effected.

I was recently refused DLA because I am able to walk, talk, feed myself and continue to try to live as normally as possible. What the DLA assessor couldn't see was the 8 years it's taken me to even admit that I have a disability and to admit that it effects me so much. What no-one sees is the hundreds of little steps I have to take to limit the risk of me having another seizure. I wonder if there are campaigning groups to join, and organisations who can help to try and bring improvement to the services people with epilepsy are provided with. I am a young, professional woman and I work hard to portray this image but my goodness it can be tiring.

For now I'm just almost glad to read your stories, not because I revel in the difficulties you're experiencing, but I feel that for the first time in a long time I am not alone.

Submitted by Sal on 10 November, 2008 - 17:28.

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.

Submitted by vicky martin on 27 November, 2008 - 18:52.

i am 29 years old and had my first grand-mal seziure at 7years old and i have to admit i coped a lot better with them as a child nowthey scare me,i am now pregnant with my second child (21weeks) my daughter is 10years old but because i not only have grand-mal i have peti-mal and also what i call the jumps my consultant has been unwilling for alot of years to take me off my medications at the moment i am only taking tegrotol ,i havent had any grand-mals but have suffered alot with peti-mal and really bad migraines which make it feel like i am going to fit i am scared to leave the house.i have an appointment with my consultant this week who i hope will be able to put my mind at rest and help me get through the next 19 weeks.

Submitted by kelley on 24 January, 2009 - 19:28.

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

Submitted by caroline on 27 January, 2009 - 00:39.

hi , im also epileptic , have been for twenty years , im 44 now and still not used to having fits . my medication doesnt seem to agree with me and ot only do i have grand mal but also having been having strange feelings of panic had scans and all are clear which is good but doesnt say why you have them .Going to see neurollgist again soon but have more information from other people who suffer the same thing I also suffer wit migraines that make me very confused

Submitted by alison on 5 March, 2009 - 23:08.

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

Submitted by Malissa.Mc on 24 March, 2009 - 06:44.

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.

Submitted by Lindsey on 28 March, 2009 - 02:04.

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.

Submitted by viki mclellan on 28 March, 2009 - 06:46.

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

Submitted by Kate on 8 April, 2009 - 14:00.

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!?!?

Submitted by Louise Howgate on 23 April, 2009 - 16:14.

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

Submitted by Vicki on 24 April, 2009 - 16:11.

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.

Submitted by Emma Brown on 27 April, 2009 - 11:17.

Hi there,
Your letter not only worries me but suprizes me. I have Epilepsy and thank the good Lord have received excellent service from the NHS and a charity called Quarriers in Glasgow. I would like to help you regarding your DLA as well as give you some VERY useful names of people who I know will help you tremendously. Plz leave a message and I will endevour to give you some advise. I hope your situation has improved since you wrote this comment.
Regards,
Lydia Ogden

Submitted by Lydia Ogden on 7 May, 2009 - 18:55.

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.

Submitted by sarah on 23 May, 2009 - 00:02.