me

[archer]

i have eplspsy sunce 10 yrs, currently on depakeen and kepra but still fitting lots.

may have to have surgry if neurologist thinks it best.

I'm in uk - any other brits on here?

[Bernard]

Hi archer, welcome to the forums!

I'm sorry to hear that you have had epilepsy for a while now and not achieved control over the seizures. Do you keep a seizure diary? Have you identified any seizure triggers?

There is a lot of good info posted in these forums from people who are very proactive in handling their epilepsy. Hopefully you will find something in here that leads you to some success in seizure control.

P.S. Yes, there are a few members here from the UK.

[archer]

yes i have a dairy my trigers are tirednes, coffree alcohl and stres but sometimes im having fits even without triggrs
my nuero wants to think abvout surgery

[Birdbomb]

Hey there Archer

Welcome. Found an interesting bunch here. Very diverse. Where abouts in the UK are you from? Have you visited http://theterranetwork.com/E/integramod/index.php?

[lindy]

Welcome to the group! My neurologist recommended surgery to me and I decided against it. I never did find any control with drugs but have found a miracle in vitamins and minerals for seizure control. Hope to get to know you better!

[archer]

i live in london, being treasted at kings college, tried 5 diff drugs alredy currently on epilm and kepra but not much gd

[lindy]

What are you taking for nutritional support?

[archer]

food

[lindy]

Food covers an awful lot of territory! What type of food or do you just eat whatever? Just curious since I try to only eat organically to avoid any harm from the chemicals in so many foods these days. You should at least take a multivitamin every day. People have had alot of success with B complex and magnesium too. Even if vitamins do nothing for you for seizure control, they are very helpful to correct nutritional deficiencies caused by the drugs.

[archer]

u r very bossy telling me i sdhld be takuing vitamins how do u knoqw im not already taking them?

i dont like new age nonsense when it comes to gwetting well

ywes i eat healthy and take a multivit ever day but i dont hug trees and take strange supplments i am perfectrly fit my doctor says so

[lindy]

I'm not a big New Age believer myself, although I have seen some things that can be called nothing but miraculous. Don't know why you think that I'm being bossy. I had asked you what you were doing for nutritional support and all you said was "food" - nothing about taking a daily multivitamin. I'm so glad that you have a doctor that you can put your full trust and faith in - so much so that you don't need to learn how to care for yourself. I didn't have the same luck and learned a long time ago that no one knew me and my body like I do and that, if I were not a full partner in my care, I was going to be in big trouble. I tried the drug route for more than 20 years and, if I had listened to my doctor, I would still be drugged to the eyeballs with ever worsening grand mals. Instead, I am drug free and have been seizure free for more than a year and a half. What I don't understand is if you don't want to know what other people have achieved success with, why are you here?

[archer]

am i not allowed to be here if i disagree about taking supplemts? if you have manged 2 get seziure free by diet fine but it doesnt workn 4 most ppl

and yes i have learned to tajke of my bodsy and nmo i dont have 100% faith in my doctor but neither of us is stupid i am involved in my treastmrnt
you are patronising
i dont feel welcome here at all

[Birdbomb]

No one here is attacking you or your treatment, please don't feel so defensive.

This is one site where alternative treatments are explored, discussed, tried, or rejected.

No one is attacked because of their choice, you may be just misreading the intention in which the questions were directed.

I have a VNS. It is not working for me. I've been on several meds, they make matters worse. It took a total knee replacement and a near death experiance to finally get my seizures under control. A very wierd situation and most people would NOT believe me.

But hey, it worked for ME.

Now how about shaking hands and making nice?

[archer]

readinf "What I don't understand is if you don't want to know what other people have achieved success with, why are you here?" seems pretty unfrierndly 2 me - i was only looking for 4 a gd epilspy foruim was nmot awarre that u have 2 acgieve sucess with yr treatnment to ne acceptred on here.

and im not being defensieve - this uis supposd 2 b the place to say hello and introduce myself so now if i mention that i take multivtsi and eat a balancdc diet that is being defensive insted of introdcing myself????

also i thijnmk asking some1 "What are you taking for nutritional support?" as a stabnd alone q is intrusive seing as i hadnt asked any1 about help wityh diet or questions about food trigers

[lindy]

I'm going to drop out of this all together. While I had meant to be welcoming and friendly, it obviously wasn't taken that way and you continue to see what I said as something that it is not. I wish you all of the luck in the world.

[archer]

How is "What I don't understand is if you don't want to know what other people have achieved success with, why are you here?" ment 2 b welcoming and fendly?

i never said i wasnt intrested in how iother ppl get control obver their fits you are jumpning 2 conclusoins

oh well this is obviosly not the right place4 me i dont like being judgd when ive only ben here 4 5 mins and i only wanted 2 maske frieds with other pple who have fits because ididnt meet any be4

[Bernard]

Hi Archer, Lindy and BirdBomb are two very nice and helpful individuals. I hope you stick around and make friends as you wanted. The best friends are the ones who are willing to help IMHO.

There are a lot of forums on the internet where people with epilepsy can communicate with each other. Each forum has it's own "flavor". This one tends to be a little more focused on members' proactive research and care than most forums I've found, so I hope you don't find that off-putting

[damian]

hey everyone, just a little curious if anyone has any advice on alternative treatment options for epilepsy, i have a 6 year old brother with hard to control epilepsy, we've been going to one of the best pediatric neurologists in the US, and would like to stay away from regular medications, phnobarbital, zonegran, etc.

[Bernard]

Hi damian, welcome to the forum!

There is a lot of information posted here on alternative treatment options. Try reading though the forum topics in the Waiting Room forum.

P.S. I think it is wonderful that you are looking out for your younger brother - it says a lot about you.