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epilepsy

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By *akie32 OP   Man
over a year ago

winchester

Any one else suffer with this, mine all started arter a car crash where i had a bad head injury, have had it a few years now, my first sizure was a frightning experiance, i had been at work, we were sat in the van having sandwiches for lunch, with the doors open, enjoying the sun, i woke up on the road with the ambulance people there, no clue what had happened, that was a few years ago now, and im on medication but still get the odd siezure, i live on a first floor flat and have woken up at the bottom of the stairs a fe times, often with broken ribs etc, however the bad ones are one thing, but the worst ones are the mini fits, these can happen anytime, dont last long, but often break things etc, its changed my life massively, would love to hear from others in the same boat, as it does get me down sometimes, i feel i cant trust my body, its made me somewhat a hermit, as i dont often risk going out , you know just incase.

would love to know any tips esperiances etc

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By *akie32 OP   Man
over a year ago

winchester

btw this isnt a plee for sympathy, and i do cope, but it would be good to hear from any others

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By (user no longer on site)
over a year ago

I’m sorry to hear the impact it has had on you. I don’t suffer so can’t put myself in your shoes. Are you taking the right medication? What about diet? I’ve heard there are loads of things you can do to help it. Fascinating really

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By *arker secrets 321Man
over a year ago

West Bromwich

My ex wife as a condition called non epileptic attack disorder .she as ad it few years ad 2 give up work through it she on loads of meds 2 help with all the things associated with condition .do stay strong and positive my friend x

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By *akie32 OP   Man
over a year ago

winchester


"I’m sorry to hear the impact it has had on you. I don’t suffer so can’t put myself in your shoes. Are you taking the right medication? What about diet? I’ve heard there are loads of things you can do to help it. Fascinating really "

yes diet plays a huge part, its amazing the things i need to avoid, and yes it has changed my life, i was very high up im my field, but cant do it now, and that sucks, as to drugs, ive been on a few, the ones im on seem to work better than most, but they arent a cure, the only cure seems to be an experimentle brain op, and im not doing that, i must admit it has been an interesting journey, and ive learned alot, its amazing the things we do daily and take for granted, that some cant, im not in the cant catogry often, but i still get on with life, its just another challange.

going back to food, the one that really supprised me was pineapple, not alowd near the stuff, other things like caffiene etc are understanderble, but pineapple ffs, used to love it

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By *akie32 OP   Man
over a year ago

winchester


"My ex wife as a condition called non epileptic attack disorder .she as ad it few years ad 2 give up work through it she on loads of meds 2 help with all the things associated with condition .do stay strong and positive my friend x "

sorry to hear about your ex, and thank you for the kind words, im a possitive peoson, and generaly cope well, my life is now so different, used to have a great job, loads of money etc, the whole perfect life, now live on benifits in a flat, wife left as soon as i got ill and couldnt pay for her shoes lol, probably better off, so it has changed things, but now have a great girlfriend and she gets it, so im ok,, its just very different.

im not one to cry myself to sleep, but i would love to hear how others get on with it, i never realised how much what is a small illness can change your life

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By (user no longer on site)
over a year ago

Hubby has FND which kind of mimics epilepsy but is dissociative, his last seizure has done some damage so all we can do is sympathise

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By *akie32 OP   Man
over a year ago

winchester


"Hubby has FND which kind of mimics epilepsy but is dissociative, his last seizure has done some damage so all we can do is sympathise "

hope hes ok, sending supporting thoughts x

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By (user no longer on site)
over a year ago


"I’m sorry to hear the impact it has had on you. I don’t suffer so can’t put myself in your shoes. Are you taking the right medication? What about diet? I’ve heard there are loads of things you can do to help it. Fascinating really

yes diet plays a huge part, its amazing the things i need to avoid, and yes it has changed my life, i was very high up im my field, but cant do it now, and that sucks, as to drugs, ive been on a few, the ones im on seem to work better than most, but they arent a cure, the only cure seems to be an experimentle brain op, and im not doing that, i must admit it has been an interesting journey, and ive learned alot, its amazing the things we do daily and take for granted, that some cant, im not in the cant catogry often, but i still get on with life, its just another challange.

going back to food, the one that really supprised me was pineapple, not alowd near the stuff, other things like caffiene etc are understanderble, but pineapple ffs, used to love it"

Really?? What’s in pineapple that you have to avoid?

Doesn’t the Keto diet (if that’s how you spell it) have a really positive effect for epilepsy?

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By *akie32 OP   Man
over a year ago

winchester


"I’m sorry to hear the impact it has had on you. I don’t suffer so can’t put myself in your shoes. Are you taking the right medication? What about diet? I’ve heard there are loads of things you can do to help it. Fascinating really

yes diet plays a huge part, its amazing the things i need to avoid, and yes it has changed my life, i was very high up im my field, but cant do it now, and that sucks, as to drugs, ive been on a few, the ones im on seem to work better than most, but they arent a cure, the only cure seems to be an experimentle brain op, and im not doing that, i must admit it has been an interesting journey, and ive learned alot, its amazing the things we do daily and take for granted, that some cant, im not in the cant catogry often, but i still get on with life, its just another challange.

going back to food, the one that really supprised me was pineapple, not alowd near the stuff, other things like caffiene etc are understanderble, but pineapple ffs, used to love it

Really?? What’s in pineapple that you have to avoid?

Doesn’t the Keto diet (if that’s how you spell it) have a really positive effect for epilepsy?

"

not sure about whats in pineapple, but all my doctors etc have said to stay clear, must say i never realised how good the nhs were untill i had this, the support etc ive had have been second to none, ive never really used the nhs before, other than self inflicted injuries, crashing bikes etc, so, a few stiches maybe a pin or two etc, but i cant praise them enough

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By (user no longer on site)
over a year ago


"Hubby has FND which kind of mimics epilepsy but is dissociative, his last seizure has done some damage so all we can do is sympathise

hope hes ok, sending supporting thoughts x"

Thank you x

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By *gentlegiant66Man
over a year ago

Kettering

Hi. I was diagnosed in 1995 when I collapsed at the wheel and went head on into a tree. Woke up in the ambulance, not being able to remember anything, not even what month it was, felt like a storm was going off in my head. They put me on the worst medication, made my eyes so painful I couldn't see, my head was spinning and suffering massive jerks in my limbs, felt like I had been hit by a bus. Paid to be seen privately and was put on epilim, it's a miracle drug for me. I feel so very fortunate that something worked for me and zero side effects. I have been fine since apart from a couple of occasions when I felt a bit odd and slept it off. I'm still taking the drugs all these years later to retain my driving licence but I have a very normal life and very grateful. I ride motorcycles on trackdays, do anything I wish, I don't let it get in my way. I am so grateful for the amazing medication, I am very lucky.

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By *othicslaveCouple
over a year ago

Norfolk

I had it for about 15 years got I'll ended up with brain swelling doing the damage but on tablets good balanced ish diet and vitamin d in the winter life normal life so can't complain now was a pain at the start coz it turns ur life upside down, but good sleep pattern is a big help.

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By (user no longer on site)
over a year ago

I don't know what that last seizure did to hubby but he hasn't been the same since, I really worry about him but our GP doesn't know anything about his condition, medically he is very much on his own, he has no friends to turn to and no way to vent his frustration

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By *akie32 OP   Man
over a year ago

winchester


"I don't know what that last seizure did to hubby but he hasn't been the same since, I really worry about him but our GP doesn't know anything about his condition, medically he is very much on his own, he has no friends to turn to and no way to vent his frustration "

i think the problem is that many people including doctors dont really understand the problem

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By (user no longer on site)
over a year ago

There's a charity called Epilepsy Action which i found was really good, they gave lots of help and advice.

Also ask your GP to send you to an epilepsy specialist, they know a lot more than your GP.

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By (user no longer on site)
over a year ago

I havn't heard or been told that pineapple needs to be avoided. A quick google only shows that processed food should be avoided.

I will continue to search though.

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By (user no longer on site)
over a year ago


"I don't know what that last seizure did to hubby but he hasn't been the same since, I really worry about him but our GP doesn't know anything about his condition, medically he is very much on his own, he has no friends to turn to and no way to vent his frustration

i think the problem is that many people including doctors dont really understand the problem"

They don't and it is really frustrating, he tries to hide it but I see the pain he's in

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