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Old 04-24-2005, 06:29 PM   #1
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Lightbulb Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

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

 
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Old 04-24-2005, 10:09 PM   #2
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Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

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

 
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Old 05-03-2005, 03:12 PM   #3
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hot day HB User
Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

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.

 
Old 05-04-2005, 08:01 PM   #4
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Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

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???

 
Old 05-08-2005, 06:26 AM   #5
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Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

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.
_________________
A friend is someone who can see right through you and still likes the view!

 
Old 05-08-2005, 10:48 AM   #6
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Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

Please read my post under the thread This Works for Epileptics. Phoebe

 
Old 05-09-2005, 12:22 PM   #7
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PINKY1 HB User
Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

Quote:
Originally Posted by Olibetgeocaca
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.
_________________
A friend is someone who can see right through you and still likes the view!
oh my god!!Thank you I will give it a try I realy have ran out of options.The reason the vagul nerve stimulator was turned off was because it didnt work and I got more and more frustraited feeling it go off and it not stop any fits.I still have it in place but its turned off.I had it running first at Once every 5 mins then on for 7 secs off for 5 secs it puts you at a high risk of pnumonia due to wether the flap over your food pipe close / opens when you eat or drink.Also the biggest risk is BRADACARDIA if you have a fit and lets say for example get hit by a car if a genral anasthetic is need then the implant has to be turned off as it can cause your heart to stop and for me the fact it didn't help stop my fits then it had to be turned off.The reason its still in place is because when they remove it,it will cause a natural dip where the box has been and I want my chest packed ,re built after its removed and at the moment they says theres no need.So I would rather leave it there than remove it.Iwill also let you know how the magnisium goes..

 
Old 08-12-2006, 05:25 PM   #8
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Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

Quote:
Originally Posted by PINKY1
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
MY VNS IS TURNED OFF BECAUSE IT DOESNT WORK. IVE TRIED AQUAPUNCTURE AND EVERY ANTICONVULSANT THAT YOU CAN THINK OF.THE DATE ON THIS UPDATE IS THE 13/8/2006.
THINGS GETTING WORSE. IF ANYONE HAS ANY IDEAS PLEASE ID LOVE TO HEAR THEM X

 
Old 10-26-2006, 10:22 PM   #9
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Greg'o HB User
Post Re: Help Needed In The Uk?im A 36 Yr Old Epileptic Whos Run Out Of Options

Quote:
Originally Posted by PINKY1
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
[Reply] PINKY I WOULD LIKE TO HELP YOU VERY MUCH BUT
BECAUSE I LIFE IN [AUSTRAILA] I NEED TO KNOW MORE ABOUT YOU THE TYPE OF PERSON YOU ARE & YOUR PAST I ALSO HAVE EPILEPSY & I HAVE MORE THEN ONE TYPE OF EPILEPSY WITCH ARE. [ABSENCE / FOCAL / TONIC-CLONIC / PSYCHOMOTOR] I HOPE THIS DUS MAKE IT EZYER FOR YOU LOOKING FORWARD TO HEIR FROM YOU
Greg'o

 
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