Epilepsy Uncontrolled - Epilepsy Message Board

PINKY1 · 04-20-2005, 08:30 AM

I AM NEW TO THE HEALTHBOARDS AND AM NOT SURE IF I'M DOING THIS RIGHT,SO IF I'M NOT I WOULD BE GRATEFULL TO BE POINTED IN THE RIGHT DIRECTION PLEASE.
HI,IM A 36YR OLD FEMALE WHO HAS UNCONTROLLED EPILEPSY.
I HAVE MANY FORMS OF EPILEPSY AND HAVE TRIED ALL THE ANTI CONVULSANT DRUGS AVAILABLE,INCLUDING THE (VNS)VAGUL NERVE STIMULATOR.
I HAVE ON AVERAGE 80 PETI-MAL FITS A DAY.(ON A BAD DAY I WILL HAVE A PETI-MAL FIT EVERY 40 SECS.
I ALSO HAVE GRAN-MAL SEIZURES TOO,THANFULL NOT THAT OFTEN.I HAD 5 IN 1 DAY LAST YEAR,AND 1 MORE SINCE.
IS THERE ANYONE OUT THERE TRYING ANYTHING THAT ISN'T CLASSED AS AN ANTI CONVULSANT?

Travis from MN · 04-20-2005, 09:39 AM

Depending on the state you live in you may have an option of a natural grown remedy with Dr approval and state issued card. But thats only in a few states. so don't go breaking the law.

If you have been through the mix of drugs and the VNS that would be a possible IF it is legal where you reside and you have a Dr that will work with you on it.

Otherwise it could be time to consider possible surgeries.

See if there are any test groups for new Epilepsy drugs comming out.

--Travis

PINKY1 · 04-20-2005, 11:39 AM

I'm Actually A Bit Of A Guinea Pig In The Uk.you See I Take A Perscribed A Stimulant Which I Have Had More Drs Object Than Agree,but I Saw The Info On Children With Adhd And Epilepsy Were Given Ritalin And In Some Children They Saw A Reduction In Seizures,so I Decided That I Had Nothing Else To Lose And First Went The Ileagle Route (sadly)as I Had To Prove It Worked Before Anyone Would Help Me.then Found 1 Wonderful Dr Out Of Lots And Lots Of Drs Who Couldn't See Beyond There Medical Books.i Was Fitting Every 40 Secs,i Couldn't Even String 3 Words Together And Couldn't Even Rem Who I Spoke To Last,with Drs Telling Me They Had Done All They Could To Help Me.i Am A Mum Of 3 Children Too.
Anyway To Cut Along Story Short,i'm Not Seizure Free But I Have My Life Back.i Bring My Children To School On The Bus,i Can Go Shopping,and I Can Hold A Totaly Normal Conversation.
So I Supose My Point Is If All Fails Pleaswe Don't Always Stick To The Book Push The Neurologists To Look Beyond There Books.
If I Didn't I Dread To Think What State I Would Be In.if There Is Anyone Else Out There Using Stimulants To Control There Epilepsy Please Let Me Know?
Pinky1

MYSTICAL7 · 05-02-2005, 08:12 AM

hi pinky i have just read your post i dont know if the same has happened to you but rwead the post i wrote about being misdiagnosed it is called misdiagnosis because this may be the same as my case but theretically if you are anticonvulsants you should not have as many seizures as you are i was labelled an epileptic for 12 years i wasnt it was the drugs causing the fits
i wish you luck and i hope you push yourself to try and get sorted out

MYSTICAL7 · 05-16-2005, 12:27 PM

hi pinky i got your reply i was talking to my mum the other day and i was
telling her about the boards and she said i always remember the proffesoor
who sorted me out said he has sorted out more people who have been diagnosed wrong then he can remember if you still have these seizures please
get another opinion i dont want you to suffer the way i did i am here if you
want to talk
mystical7