Scared and worried for the future - Epilepsy Research...

Epilepsy Research Institute

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Scared and worried for the future

majortom10 profile image
9 Replies

Hallo everyone, newbie to the community, recently my consultant told me I might not live after 50!!! because epilepsy causes certain area of the brain to burn out!! I'm totally at a loss, my epilepsy is not that severe, I have moments of blankness but no real seizures, can any one advise please.

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majortom10
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9 Replies
rustypen31 profile image
rustypen31

Many epilepsy sufferers live longer than 50 years. I'm 76 years old and do so. I suggest you change your consultant if that is possible.

majortom10 profile image
majortom10 in reply torustypen31

Thank you rustypen31, I’m pleased to hear your at a grand old age!! that’s very reassuring. I’m seriously thinking about changing my Consultant after he made a ‘throw away’ comment like that when I asked for a prognosis! When I asked him to explain more he said certain parts of the brain burn out’!! I don’t know how to go about changing my Consultant, it seems to be a bit of a minefield! Thank you once again for your reassuring response I wish you well for the future.

Hi Majortom10, firstly welcome to the site. I have had epilepsy now for 44 years and am still going; I am now 60!

Unless you have specific testing through MRI or scans and they find out the area of the brain involved, I am sure you still have many years ahead. Doctors joke with us at times, and occasionally what they say isn't funny, even though they don't mean to be nasty.

If worried about the doctor, then seek a 2nd opinion.

majortom10 profile image
majortom10 in reply to

Thank you so much for your reassuring reply, I was really upset by my Consultants comment when I asked for a prognosis 😳 my epilepsy is not as severe as some people, I feel for them, it’s really about short lived blank episodes without any real physical symptoms like shaking etc. I’m seriously considering changing my Consultant but that appears to be amine field, thank you again for your reply and I wish you well for the future.

meckford profile image
meckford in reply to

Hi. Me too. I have had seizures for 40 years now and I'm in my 60's. That's not to say I don't have problems and my memory is lousy, but I'm still going strong.

Hi glad you feel happier. I have tonic clonic seizures, jerking, etc. which last 35 minutes a time so thank goodness, you seem to be a mild case so far. If you aren't happy with the Consultant now, you'll never be happy with him/her. All the best and keep us posted.

Angiebaby0121 profile image
Angiebaby0121

Hi I'm sorry to hear how your consultant has treated you. I would suggest going to your GO and asking them to refer you to a different consultant, they shouldn't refuse as it is your right to have a 2nd opinion.

Angiebaby0121 profile image
Angiebaby0121 in reply toAngiebaby0121

Sorry meant to say GP (bloody autocorrect lol)

blackpony profile image
blackpony

I'm with the rest here, I'm 55 and was 39 when I started having them. I had stents,a triple bypass and then a heart attack in which makes me at a higher risk. I was never told a certain age I would live so I'm with the rest here get a second opinion!

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