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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 (not verified) on 21 August, 2008 - 02:09.

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 (not verified) on 13 October, 2008 - 18:45.

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 (not verified) on 18 October, 2008 - 22:04.

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 (not verified) on 25 October, 2008 - 20:33.

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 (not verified) on 3 November, 2008 - 22:25.

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 (not verified) on 10 November, 2008 - 14:28.

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 (not verified) on 27 November, 2008 - 15:52.