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TOPIC: HOW DO YOU COPE WITH EPILEPY

HOW DO YOU COPE WITH EPILEPY 13 years 4 months ago #65

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EPILEPSY CAN BE A HARD DISABILITY TO LIVE,
WE CAN BE INJURED,WE CAN BE VIOLENT,
THERE ARE THE EASIEST OF TASKS WE HAVE TO ADVOID INCASE OF AN ATTACK COOKING OR RIDEING A BIKE OR EVEN HAVEING A BATH ARE JUST A FEW OF THE MOST DANGEROUS THINGS AN EPILEPTIC PERSON COULD DO WHILE ALONE,HOW DO YOU COPE? DO YOUR EPILEPSY GET IN YOUR WAY OF EVERYDAY LIFE?
OR DO YOU NOW ANY TIPS THAT MAY HELP OTHERS THEN GET INTOUCH AND TELL ME,

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #100

Hi there,
I have had epilepsy for 37 years, and once that the doctors or specialists find out what medication suits you best, your life will improve no end.
Over the years I have been able to drive, although I choose not to now, I am married with 2 boys, so it is NOT the end of the world, even though it may seem it at times.
Try not to think about the things you can not do, but the things that you excel at.

Malh

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #102

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malh, thankyou for getting back to me,its great that your medication is keeping your epileptic attacks at bay,and you are able to live your life at a full,and i do hope that your epilpsy can be a thing of the past .

how ever i must point point out that not every person who sufers with epilepsy are this lucky and there are many types of epilepsy and no fit is the same there all different ,it was told to me there are just as many types of epilepsy as there are sufferers.some like yourself can have there epilepsy controlled,there are others who get no benefit what so ever or they may be milder or shorter,like many things in the world the brainand epilepsy is a funny thing to work with,

to your question yes i am a sufferer since i was 8yrs old just over 20yrs ago, and i have ups and lowest just like many other sufferers

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #103

I joined this forum with the intention of exchanging experiences with others and how I have coped over the years, not to be told the obvious
Do you think I dont know the fact there are many types of epilepsy?? Nothing you can tell me is new. I have had it for 37 years and yes I have had my share of ups and downs.
As I type this I am having a petit mal fit, but I carry on with it. I have learned how to cope and I was hoping to pass on the ways that I cope to others.
After one day, I realise this site is not for me, as it looks like all you want to do is to wallow in self pity.
I wish you well for the future but you need to listen to those who have beaten it and make a success from life

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #104

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You are 100% right Mal, I want users to exchange experiences.

I hate people when they say 'poor thing' etc...

You have a lot share with other users.

Hope to see you soon on here

Karl

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #105

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im sorrythat you may have felt affended by my last post,

in no way was i acting in self pitty,i was just pointing out that you were one of the lucky ones unlike many of the sufferers of epilepsy,this forum is only just starting and we will talk and help each other in ways we have learnt ,and you do have to remember that what works for you may or may not help the next reader,

and at this present time i am experiencing technicol problems and shall be back as soon as possibile,

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #106

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as i mentioned in my last mail to mahl i said that i was also a suffer of epilepsy (gran mal) this is where my whole brain is effected, i started having fits when i was 8yrs of age this was caused to me falling on a wet floor and banging the back of my head up till my mid teens i never had more than 2 fits a year,then out of the blue they were getting more frequent for a number of years i suffered this,and it wasnt till i went to the national sociity of epilesy with another sufferer (a hospital in the uk that only deals with epilesy ) i needed to know more about the condition,

the hospital it self dont only monitor your drugs they watch at what you,drink,do during the day,

they would then tell you idears on how to try and cut your fits down or try and prevent them being so forceful, so i kept going back watching learning asking questions not only about my epilepsy but many other kinds as well,

one of the nurses there she once told me all these suffers in this hospial have over 5 bad fits aday and once they get them on a drug that suites there body the next step is their diet as there are many foods that we eat that flush our medication straight out of our systems,

she then went on explaining the sort of foods we should have and when,so the next day i went straight on that food chainging my eating habbits in my case i was loving it,some of the food was naughty but nice,

and you now i went 11years with out a sighn of an attack,

but i must stress like medication it dont work for everyone it takes about a month to start noticeing the difference,

and it also has to be cleared with your gp if you suffer any other disabilitys or illnesses

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #113

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i have read the message that was written by caz,i feel that you need someone to help you,would you please get back intouch with me as i do think i can help you,please use the contact us at the bottom of this page leave you e-mail with karl and ill get straight back to you,

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #195

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All though many sufferers of epilepsy have done there own reseach into this condition,there are many new sufferers each day,if they were like me i would want to find out what they could,they would want to learn from us,
at the same time yes we may want to think we know it all because were a long term suffer but we dont,there are always different drugs comming onto the market,new operation to lessen or remove this condition,
the parents of young children they would be the first to see everything on this condition dont forget how a parent feels while her child is fitting there minds are all over the place scared frightened useless all they can do is stand there and it happen,
I was just reading my last reply from mahl again,
it got me thinking there he is who seems to have got himself worked up saying yet once again hes fitting while hes typing i would like to know how he managed as all fits come with some sort of jerkiness then thats without some form of brain disfuntion while the fit takes is cause, as he mentions he has peti mal which is a mild form of epilepsy but even so its left me bafilled, i wonder if he knows about the other seizers in my case i suffer grand mal,i am jerking like mad i go unconses i stop breathing buring a fit i nearly always injure myself i dont get any warnings so i cant get myself in a safe place,do mahl expect me or people like me to sit at a computer and type away,
i think the tables have turned a bit now i am not the one wallowing inself pitty,it sounds like mahl is.
So why is mahl fitting at the time hes typing away on his computer is it because hes useing a computer knowing it would bring on a seizer or is it because hes got himself worked up,these are not what i would say as having his condition undercontrol,
im sorry you feel this site is not the one for you however you knew we were just starting this site you could have your say it would have been put on this page but we couldnt have a live chat yet there were no other sufferers on this site yet,
hope you do come back and visit us once where up and running to the full.

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #196

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All though many sufferers of epilepsy have done there own reseach into this condition,there are many new sufferers each day,if they were like me i would want to find out what they could,they would want to learn from us,
at the same time yes we may want to think we know it all because were a long term suffer but we dont,there are always different drugs comming onto the market,new operation to lessen or remove this condition,
the parents of young children they would be the first to see everything on this condition dont forget how a parent feels while her child is fitting there minds are all over the place scared frightened useless all they can do is stand there and it happen,
I was just reading my last reply from mahl again,
it got me thinking there he is who seems to have got himself worked up saying yet once again hes fitting while hes typing i would like to know how he managed as all fits come with some sort of jerkiness then thats without some form of brain disfuntion while the fit takes is cause, as he mentions he has peti mal which is a mild form of epilepsy but even so its left me bafilled, i wonder if he knows about the other seizers in my case i suffer grand mal,i am jerking like mad i go unconses i stop breathing buring a fit i nearly always injure myself i dont get any warnings so i cant get myself in a safe place,do mahl expect me or people like me to sit at a computer and type away,
i think the tables have turned a bit now i am not the one wallowing inself pitty,it sounds like mahl is.
So why is mahl fitting at the time hes typing away on his computer is it because hes useing a computer knowing it would bring on a seizer or is it because hes got himself worked up,these are not what i would say as having his condition undercontrol,
im sorry you feel this site is not the one for you however you knew we were just starting this site you could have your say it would have been put on this page but we couldnt have a live chat yet there were no other sufferers on this site yet,
hope you do come back and visit us once where up and running to the full.

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Re:HOW DO YOU COPE WITH EPILEPY 13 years 3 months ago #205

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karl
in reply to your reply i would like to say that i have to disagree with your comments,male is thinking of his own diability,for myself i have to put something on these pages that would cover all aspects,all sorts of people young old men women and other disabilitys they may have as well as epilepsy,
im a believer in the words---you have to be a sufferer to know what a suffer is suffering as you never will know what the suffer is saying,

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Re:HOW DO YOU COPE WITH EPILEPY 9 years 6 months ago #32927

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PEOPLE THAT HAVE REALLY HAVE EPILEPSY KNOW HOW IT FEELS .
THEY KNOW HOW IT FEELS TO HAVE ALL THOSE TEST THAT MEAN
NOT A DAM THING. SITTING IN A HOSPATAL AND WAITING
HOW DO I COPE ? HARSH

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