I've just been diagnosed with epilepsy - any advice?

[Pollyanna]

i'm a bit freaked out tbh - i've never had any fits before and now (at 35) I've been diagnosed. I don't have propert "fits", just strange episodes, but I've been told I can't drive, and should take medication.

Is there any alternative to medication? Does anyone know whether this can get worse, so I have the full fits? I am terrified that I could have a fit while I am with the children and no one will be able to help me.

[beckybrastraps]

My mum was diagnosed in her mid forties. No-one knows why it came on so suddenly. She has both the "episodes" you describe, and grand mal seizures. It hasn't got any worse over time, but she did start on medication straight away.It took a while to find the right medication (on every bizarre effect was that her hair went really curly!)and the right dose, but now she has and it very rarely affects her. Once you have been free from fits/episodes for a year you will be able to drive again. She was also scared by the diagnosis, but more than 10 years on it doesn't bother her. Good luck finding the right medication for you.

[brian2]

no advice but hope things go ok for you!

[joanna4]

I was diagnosed in my twenties so i had to do the whole having children thing whilst medicated.I am very boderline everythime they test me but if it wasnt for my medication then I might be lots worse I have never had a fit in front of my kids. I would say if you dont take the stuff they give you to keep it under control it might be only a matter of time or you may be very lucky but while ever you will continue to have abscnces it is best you take something than nothing.If you ever need support then cat me I will help you if you unsure about anything.

[waterfalls]

My niece has epilepsy, but like you only has absent episodes, they are called 'petit mal' she was dx 8 yrs ago, and so far they have not developed into anything more.

[Mo2]

You should be able to get lots fo help and information from www.epilepsy.org.uk/

[Blandmum]

Pollyanna, epilepsy is quite a common condition, but most people have never seen someone have a fit. And the reason why is that for the vast majority of people with epilepsy their fits are under good control.

there isn't any reliable alternative to meducation, but once under control it tends to stay under control.

One thing to be aware of, don't take St Johns Wort....it can lover the effectivness of the anticonvulsant medications.

A mate of mine has epilepsy, sounds similar to yours, I have never seen her have a fit.

[joanna4]

It is only natural to worry that your children might see it but like i said mine never have.In addition my mum has epilepsy and i have never seen her fit ever so in all i have lived with it all my life really.

[majormoo]

Hi, my mum was diagnosed with epilepsy shortly after I was born. She had hardly heard of Epilepsy so was terrified when she found out. Her grand mal fits are completely controlled, but she still has petit mal fits (sort of 'funny turns' where she shouts a bit) as they were unable to control these completely with medication. She has been told however, that she is unlucky that they are not controlled, as many people's are completely so.

So I have grown up with epilepsy around me and have never seen a major fit. However, my sister and I just got used to mum having her petit mal seizures from time to time. It was not really a big deal to us and I don't think we ever made any allowances for her or anything growing up(selfish as we are!!). It has been a pain for her that she cannot drive-it isn;t an easy thing to live with-but she hasn't let it take over her life or anything.

My Brother in law also has epilepsy (following a car accident) and his is completely controlled. He is driving again and has not had a fit for years.

Hope this helps

[throckenholt]

A friend of mine was diagnosed at a similar age. He had never had fits - just sort of vacant periods that he had no memory of - usually lasting only seconds to a few minutes.

It does not noticably effect his life much apart from not being able to drive. He does take medication - but the dose and the type was varied as the side effects seemed to change over time.

[bundle]

pollyanna, sorry to hear about this. I'm in contact with a couple of women with epilepsy for work, I'll dig out their details for you,xxx

[hoxtonchick]

sorry to hear this pollyanna. i think that edam also suffers from epilepsy, hopefully she'll be along soon with some helpful advice. take care.

[Pollyanna]

ks, my "episodes" are very weird - kind of like head rushes. I thought it was the menopause to start with! I do get a bit of warning, but am starting to worry - what would happen if I had a fit in the bath?

My doctor has said that they may develop into fits at some stage.

I was diagnosed with an eeg, and have also had a stressful few weeks as these fits can develop with a brain tumour too, but luckily the mri was clear. I have been given no information though so don't know what can trigger the fits, whether I can drink, whether there are alternatives to the medication etc etc.

[bundle]

oh yes, edam is excellent, she has lots of info at her fingertips

[Jimjamskeepingoffvaxthreads]

pollyanna I'm an alternative medicine type but to be honest with epilepsy I think it is more sensible to take the medication, and most complementary practitioners will tell you that.

Don't worry too much about having a seizure in front of your children. We attend a disabled swimming club, one guy there has a seizure pretty much every week, I explained a little to ds2 (aged 4) and he is fine about it. I know its different if a child is alone etc but they do tend to take most things surprisingly well.

[Jimjamskeepingoffvaxthreads]

How often do you have them Pollyanna?

[lexiemum]

haven't read all the replies so sorry of this is repeated.

as a student learning disability nurse I supported an individual who had regular tonic-clonic seizures - most of these when reviewing what/when they happened were down to his diet. There was a definate increase when he hadn't drunk or eaten properly during the day.

[Pollyanna]

ks, I don't want to panic you, but I think a deja-vu type feeling can be a type of epilepsy as well. (I'm sure it can be alot of other things as well, and I'm not an expert). Ask your doctor to refer you for an eeg test and/or a neurologist.

Jimjams, I generally have them once or twice a month, and they are definitely related to certain times of the month, but have also had them alot more at certain times - like over christmas, when I was both stressed and drinking alot of alcohol. Also this week while i was waiting for the results of the mri scan.

I'm not really stressed about upsetting the children if I have a tonic-clonic type fit, but more that I will hurt them (if i am holding the baby for example).

Lexiemum, that is really interesting - I have been on a diet this week and noticed that I start to get the feelings when i am feeling hungry.

[Pollyanna]

ks, I also get the hot feelings in my head and body.

[Jimjamskeepingoffvaxthreads]

Oh I see what you mean. I suppose all you can do is put the baby down if you feel it coming. I think most people do get warnings, probably enough to put a baby down.

I get a rushing type feeling in my head (exactly how I would describe it) when I am very tired (which does of course lower seizure thresholds). Wondering now if I should get it checked out. Will decide if it happens again I think!

[joanna4]

Yes i certainly notice lifestyle has a lot to do with how i feel and how it affects my epilepsy.I was always told not to cut out carbs as i need them for my meds to process properly.Also if i am very tired i feel a bit jumpy so i try if i am out for a good night to get a few early ones in first.Drinking for me is an absolute no no i was told as it makes my meds less effective but like anyone else i have got totally lashed before now (occassionally) and it has had no effect.