Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options - Epilepsy Message Board

PINKY1 · 04-24-2005, 06:29 PM

IM A 36YR OLD FEMALE WHO HAS MANY DIFF KINDS OF EPILEPSY,I HAVE HAD ALL THE ANTICONVULSANTS AVAILABLE INCLUDING THE VNS WHICH IS STILL IN PLACE BUT NOW TURNED OFF.I HAVE ALSO BEEN A PART OF PLCEBO TRIALS WITH NO LUCK EITHER.
IM LOOKING FOR ANYONE TO BE ABLE TO OFFER ME A GLIMMER OF LIGHT.I AM A MUM OF 3 CHILDREN,AND I HAVE EPILEPSY SINCE I WAS 6YRS OLD,AND FOR THE FIRST TIME EVER IM SCARED FOR MY SELF,AND TRUST ME IM ONE OF THOSE PEOPLE TO GET ON WITH LIFE.BUT FROM WHAT I DO UNDERSTAND MY EEG's ARE LOOKING VERY BAD AND I HAVE NO MEDICATION ALTERNATIVES LEFT .CAN ANYONE THROW JUST A LITTLE LIGHT MY WAY?PLEASE

Phoebe · 04-24-2005, 10:09 PM

Why is your VNS turned off? You didn't mention what kind of seizures you have, but you did say you have many types. The statistics are once one med fails to stop the seizures, there is lass than a 15% chance that any will stop them. That is proven fact. Not at all great odds at finding a med to stop them unless one of the new ones does, but since you have had epilepsy since childhood, it has had time to progress which only makes it harder for the meds. I have had it since childhood too and tried many meds which failed to stop my seizures just as in your case. I had surgery nearly 7 yrs ago. It was the best alternative for me, and I made the right decision. I only wish I had been referred to the Epileptologist sooner. Sounds like surgery is something for you to consider provided it is an option. Have you had a VEEG? That will tell the docs what options are possible for you. Do you see an Epileptologist or a general neurologist? The UK is ahead of the US re meds available by a few years. You seem to get them first Depakote was one of those and Pregabalin was another. Do you have Keppra and Lamictal there? have you tried those? It all depends on the seizure type and whether or not they work for you. If you haven't been to one and have the opportunity, please see about getting to a Comprehensive Epilepsy Center to see an Epileptologist. Phoebe

hot day · 05-03-2005, 03:12 PM

Hi
Have you tried a combination of Topirimate, Lamotrigine and Clonazepam (or an other Benzo drug). Worked for me and i was at my wits end.

PINKY1 · 05-04-2005, 08:01 PM

Quote:

Originally Posted by Phoebe

Why is your VNS turned off? You didn't mention what kind of seizures you have, but you did say you have many types. The statistics are once one med fails to stop the seizures, there is lass than a 15% chance that any will stop them. That is proven fact. Not at all great odds at finding a med to stop them unless one of the new ones does, but since you have had epilepsy since childhood, it has had time to progress which only makes it harder for the meds. I have had it since childhood too and tried many meds which failed to stop my seizures just as in your case. I had surgery nearly 7 yrs ago. It was the best alternative for me, and I made the right decision. I only wish I had been referred to the Epileptologist sooner. Sounds like surgery is something for you to consider provided it is an option. Have you had a VEEG? That will tell the docs what options are possible for you. Do you see an Epileptologist or a general neurologist? The UK is ahead of the US re meds available by a few years. You seem to get them first Depakote was one of those and Pregabalin was another. Do you have Keppra and Lamictal there? have you tried those? It all depends on the seizure type and whether or not they work for you. If you haven't been to one and have the opportunity, please see about getting to a Comprehensive Epilepsy Center to see an Epileptologist. Phoebe

HI,IVE TRIED KEPRA ABOUT 2 YRS AGO.UNFORTUNATLY IT MADE ME SEVERLY DEPRESSED IN A VERY QUICK TIME. 2 WEEKS..SO I WAS TAKEN OFF IT PRETTY SHARPISH.I HAVE HAD TOPOMAX ZARONTINE ,PHENATOINE,EPILIM PHENOBARBATONE,VALIUM,ETC,ETC.I HAVE PETI-MAL FITS DAILY.ON A GOD DAY MAYBE 50 A DAY AND ON A BAD DAY I HAVE THEM EVERY 40SECS..ITS VERY FRUSTRAITING.(EXCUSE MY SPELLING IM DYSLEXIC)FUNNY WE IN THE UK FEEL THAT THE USA IS FAR ADVANCED WHERE EPILEPSY CONCERNED.UNFORTUNATLY IM NOT ABLE TO HAVE SURGERY..SO AT THE MOMENT IM ON A STIMULANT WHICH DOESNT CONTROL MY EPILEPSY BUT IT GIVES ME A QUALITY OF LIFE.I CAN FINISH MY CONVERSATIONS (HAHA) INCREASED CONSENTRATION ETC ETC,BUT AM DESPERATLY LOOKING FOR HELP WITH THE EPILEPSY???

Olibetgeocaca · 05-08-2005, 06:26 AM

I have used alternative treatments in favour of orthodox medicine for over 30 years now....with dramatic results. I have helped family and friends and seen massive changes in their health.

On one occasion I did research for a friend of mine who had grand mal epileptic fits every day and was on the strongest medication available.....she accepted the results of my research and the fits stopped immediately....all was well for 3 weeks till the next appointment with her doctor came up, and he was furious....... even though she had enjoyed 3 weeks free from fits....when she told him what she had been doing. He threatened to strike her off his books if she continued with this nonsense, so she went back to the medication and having the fits!!

Because of the results I got from her I recommended my research results and made visits to other sufferers....children in particular ..... and finally was invited to the Clinic to give a talk....doctors there listened, but were not convinced that it was wise to move away from orthodoxy!!!

Epilepsy is a lack of magnesium. The solution is simple....try it!!

Take half a teaspoonful of EPSOM SALTS in fruit juice every morning

It works.
It does you no harm.

All the best.
_________________
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