New Member

[NewYorker]

Hi, I’m a new member, just taking off my coat to get comfortable. I’ve had a really tough time with epilepsy. It started as partial seizures when I was 14. These got worse and more frequent. I tried all the drugs and combinations possible through the years, but none have helped the seizures, and the side effects were all terrible, too. So I tried brain surgery twice, but that made the seizures worse, too. I had my first grand mal four years ago, when I was 35, due to obvious stress with work, my boyfriend, my home, and my family all at once. I tried the drugs again, but they don’t help, and again the side effects are strong. So I’m at a loss now. I don’t know how much longer I can keep my job because the seizures are getting more and more frequent. And that alone is really slamming my memory. I’ve seen all the expert doctors in the Eastern US, and they all agree they’re hands are tied. Again, I’m just lost now, worried that I’ll have to stop working as my seizures are too much for colleagues to deal with. But then what do I do with all my time? And what do I live on? And on and on and on. Thanks for the chance to chat.

[RobinN]

Hi New Yorker - WELCOME
It sounds like you have been through the wringer. My daughters seizures began at the age of 14 too, though she started with tonic clonic seizures. The meds made the situation worse, so I found some information online that suggested changing nutrition. We also have done neurofeedback.

So as I see it you are not at the end of your rope yet. This is certainly not a quick fix, but my daughters seizures went from 6 per mo. to one every few months now. We are moving in the right direction. When her diet remains good, and her digestive tract heals, and blood sugar is balanced, she does not have a seizure. The neurofeedback has helped to train the brain, to learn not to seize in times of body stress.

I am treating her adrenals, liver, gut, blood sugar, and something is working. She remains med free, and the quality of her life is improving.

There is a lot of information about this approach, so you won't be alone when you take the info to your doctors. Hang in there. We are around to support you.

[Bernard]

Hi NewYorker, welcome to the forum.

So you've tried numerous drugs and brain surgeries without success? How about diets, neurobehavioral therapy, EEG neurofeedback or other alternatives?

Proactive Prescription for Epilepsy

[Meetz1064]

is quite a LOT of information regarding diet and neurofeedback around. Not just here, but on other sites as well. It is something to seriously consider, and if your doctor doesn't want to listen, then it is time to possibly go doctor shopping. Don't ever let your doctor give up on you, tell you there's no hope or anything like that. There is new information coming out everyday....

By the way, welcome to CWE. I'm sure you're going to like it here. Plenty of friendly people and lots of nooks and crannies to check out. Mr B, our host, has built us an AWESOME home here....

Take care,

Meetz

[NewYorker]

Great to hear new suggestions already. I've checked out vitamin issues like magnesium, but I'm hesitating to dive into things like those magnesium injections, etc just yet. Neurobehavioral therapy is an inviting new term to investigate too. Thanks already for your responses and suggestions! These are just the things I have to learn about. There's hope! Much appreciated.
Cheers,
NewYorker

[RobinN]

I have never had a magnesium injection, though I have used liquid ionic magnesium, under my tongue, with great results. It is an over the counter mineral, with few to no side effects.

There truly is a lot of HOPE. You just need to get back in the fighting spirit.

[Ruth]

Hi, glad to have you here. Always feel free to ask away, we are here to answer and support.

It sounds like you should listen to the others about the neurofeedback and nutrition diet. It sounds like your medicines are not helping you or you are on the wrong combination. You have tried everything. Keep us posted.

[NewYorker]

Hi! Thanks again for the suggestions for new treatments. I've been researching options for neurofeedback. I see some practices that look legit, but I see the high prices there, too. Is there any place to get recommendations for these type of service providers? Do we know if the Biofeedback Certification Institute is trustworthy? I'm not afraid to try new strategies, but shoot, I can't throw away a lot of money here.
Thanks again for the support.

[RobinN]

Having done both - nutritional changes and neurofeedback - it is best to begin with nutrition. It must be in place for the NFB to work.

http://www.eeginfo.com/research/epilepsy_main.html
http://www.eeginfo.com/what-is-neurofeedback.htm
http://www.eeginfo.com/newsletter/?p=213

[Ruth]

Hi,

I was wondering about the Biofeedback Certification as well. The closest one is 60 miles away. There are 2 neurofeedback places there. One says that they have one thing that the other does not. That is why I did not go through with it. Neither one says that they have a Biofeedback Certification.

Please help us with this Robin.