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?
Last edited by PINKY1; 04-20-2005 at 04:46 PM.
Reason: TRYING TO FIND OTHER USERS OF STIMULANTS FOR EPILEPSY
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?
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
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
i agree you should get another opinon. you may have been wrongly diagnosed. I have had seziures since i was 13. and i am 25 now. i started out on tegretol, then moved to depekote and then to lamictal. i have taken lamictal for almost 10 years now. i think you need to get another diagnosis. you may not be an epileptic. or you maybe. you should go to a dr that specializes in Epilepsy only. they are rare and hard to find epileptologists. i only know of lik 5 in the USA. i personally have never seen one. my final diagnosis (a complicated one) was made at Cleveland Clinic in Ohio
Hi Mystical 7 you may think I'm nuts replying to a thread left by you in April but alot has been happening.
Ive never really been told wether my Epilepsy was Hireditory or not (excuse the spelling as I'm dislexic too.)Ive never been told of triggers the only warning sign ive ever had is the lightning flashes across my brain.I think it was a warning but still dont know for sure.
I believe that if you get Epilepsy under the age of 20yrs without any particular reason then there is a heriditory factor?Is this true?Also is it true that if you have your tonic clonic fits early in the morning then this means that startled can be causing them?
I must say the experience Ive had of NEUROLOGISTS leaves me with the imprension that they are all unable to look at the bigger picture?(For example If you get given a drug for your type of Epilepsy and it does't work then all they seem to do and say is but it must coz there medical book says so?
Thanks for your talk back I really apreciate it.
Not all who have seizures begin under age 20 have heriditary factors, or chromosomal disorders...some may be due to trauma, or simply unknown reasons. If all of the anticonvulsant drugs didn't help at all, I'd also suggest you push for more testing, and especially video-EEG and neuropsychological testing (not suggesting any psych reasons, but those tests can narrow down some of the places in the brain that might be causing trouble- especially if you've already been diagnosed as dyslexic).
You mentioned in the reply you sent me (especially since i have been diagnosed as dyslexic)I never realised there was a relation to epilepsy?They tell me I haveTonic Clonic seizours & juvinile ones & partial seziours (peti-mal)Which I have on a daily basis(approx On a GOOD DAY ABOUT 50)(On A BAD DAY ABOUT EVERY 40 SECS)and I know that they say they cant do damage but it plays havock with your memory.This how I explain it
If I get you to close your eyes,then put a cup on the table in front of you (which your not aware I've done)
Then I remove it again while you still have your eyes shut (which your still not aware of)
Then I ask you to open your eyes and I proceed to say wheres the cup gone?You of course say WHAT CUP?Everyone else in the room may say it was there a minute ago,so by now Im thinking (I don't rem seeing a cup)?
I then think Ive lost part of my memory but I havn't I've lost time? Because I've Never Made the Memory?
DOES THIS MAKE SENSE?
What I'm trying to say is that if you have the same problem as me where I'm constantly trying to bring back lost memorys then don't it will drive you nuts and some of the time you will never have made them in the first place..Sorry guys never meant to drone on just trying to help those who don't have epilepsy understand what we feel
PINKY1 (To be really Honest they say I have many kinds of Epilepsy)all very confusing
Last edited by PINKY1; 08-02-2005 at 11:10 AM.
Reason: FORGOT TO ADD A BIT
I don't know for sure if there is a connection with dyslexia and epilepsy, but neuropsych testing can tell if there are parts of the brain that aren't working by doing a bunch of verbal and visual tests, as well as memory testing, and that might give the docs better ideas of what part of the brain isn't functioning right.... If you have dyslexia, you may have other parts of your neuro functioning that can be identified, and better treated. I do have memory problems, but mostly related to trying to figure out what happened just before, during, or after seizures-- I've been TOLD what others have seen, but I don't have my own memory for it, which does drive me nuts !! I also made mistakes at work prior to medical leave and disability, that I had NO awareness of (or I wouldn't have messed stuff up !!). The last 2-3 months I was working (Feb-April 2004), are a blur with bits and pieces being clear, and other parts just being "gone"....I was sent out of work by ambulance 7-8 times, and remember almost nothing-- there's a couple of vague foggy memories,but mostly nothng.... very frustrating to not know what was going on....