Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Ideas for all to help us all

Sun, 04/29/2012 - 21:46

     I am no Albert Einstein, but since he had epilepsy, I guess most of us could have a little smarts in the brain to help others.  When I was 5 months old, I knew nothing about seizures. At age 5 years old I knew nothing, as was the same at ages 10, 15, 20, 25, & 30.  I age 34 I had my 4th ever Grand Mal. When I knew things were starting to get worse I decided to take things in my own hands and research a few things on seizures. A woman who knew much more about healthy living and natural ways to heal the body, told me about these food additives like MSG, Nitrates which was all that was known about then in 1994 to relate to seizures. Since the 1990's was the worse 10 years of my life and I had no idea how and why this was happening I gambled with life and ate foods like candy not realizing some foods had nitrates in them. After having the grand mals I had, I then checked off that food on my DO NOT EAT list so I never gamble in having another grand mal when I see that food. I went to get better treatment at NIH when I was 40, as at age 41 I had my brain surgery in my upper right temperlobe where I leison was removed. It was to have been the size of an average thumb or maybe bigger to an average schrimp. All that happened as the only thing that is did was to change a seizure pattern as MSG, Nitrates, & so many other food additives can still possibly kill me from SECDEP  which is Sudden Explained Cause/s of Death in EPilepsy. People, there is no SUDEP. That what they the FDA and Doctors want us to believe as we are to live in fear and take the medicines that all now may cause aspetic meningitus or swelling on the outer surface of the brain as Lamictal is suppose to do in a lot of us now. What you can learn after 50 years of living with seizures is amazing, as we are kept in the dark like a mushroom, and are just a number to the medical world. Since age 40, to now almost 52, my condition is 95% better but I know I can always die if I eat the wrong foods or drink a wrong drink. Are sweet drinks with sugar really that bad compared to the toxic diet drinks we are told will help us lose weight & help sugar levels ?  Sure the perfect diet for seizures, A diet Soda, Hamburger & a few fries fried in hydrogenized or hydrogenated cooking oils, and some healthy packaged sealed snack food with MSG or some other concentrate or isolate in their food. If foods like that effects you as they would me, that is a 99.5% sure way to have a seizure. Then later we may drink some ALOE VERA GEL and brush our teeth that both may have CARRAGEENAN that will maybe give us a seizure, and cause SECDEP.  All of that to say we all need to take notice very closely what we eat and drink every day. After 50 years of having seizures and seizure symptoms for 600 months, I am tired of the arrogance and the ignoring attitudes some people have when the same things that do effect me could effect anyone in time if people are not aware of what canbe the root problem to their condition, as I know not one brain is like another. Just as snow flakes are different, they also have the same reaction to the air temperature. That saying in time human brains may all act the same way as I have noticed in many years of my life how food additives have effected me and my seizure patterns as a kid, teenager, young adult & now. I have seen how they act in days pre surgery and days post surgery. Different and better as life is with out the bad foods that can kill me, I am more convinced that the medical institutions does not want to explore in this area of finding the real root cause/s why we can have seizures this way. Never after 11 years post surgery, would I have thought 11 years ago that I would be a target for Monsanto or any other corporate food giant chemical company would be allowed to have approved by the FDA to have these things like MSG, Nitrates & etc... that can kill us.  The state of California on election day is having a vote on this topic relating to Monsanto and others, and letting the public and state voters decide what they are able to read on all foods they buy to clearly state that the foods are safe from ALL GMO'S & other MSG like additves that are proven to act like MSG in the human body/brain. This is one thing we can all hope California and the people out there does the right things as they make it harder for the food additives companies like MONSANTO to get voted down at the voting booths. Monsanto is fighting the vote relating to this referendum over this issue. In their views it would be about the lost jobs, over the publics general health and brain health.  People should follow this especially anyone with ANY brain condition as seizures/epilepsy is just one condition MSG & etc... can cause. What else we can do ? 

1- Let's get ETP, EFA, CURE and whoever else who claims they care for us give them a chance to prove it. Let's see them be on the side of the people in California and support that vote they want to bann MSG, Aspartames & all other food additves I know can cause Grand Mals and other seizure symptoms. 

2- Follow and chart your own seizure pattern and look at the foods and drinks you consume for 2 to 4 weeks and 1 to 3 months, then look for a repeated action if or when you may eat a few foods that may question doubt if it caused a seizure or seizure activity.

3- If we all learn about our condition like this, and see a clear cut and proven pattern, someone would have to respect what we all say about this issue. This is why I believe there should be a good survey on this site as to ask us all what ''we believe'' is the root cause or causes of our seizure condition. My question is this...   If this is all a myth to all who claim to care & help us, then Why am I taking anti-seizure drugs for what can happen to me that the drugs do nothing to stop or prevent what can happen to me if I eat or drink the wrong things that goes to my stomach ?   I hope the Mayo Clinic specialist on seizures has a good answer for that, that I read so many other explanations for other things relating to seizures.    

  I am sure I will probably get mean mail from the people who could care less what I think and believe. My life is my life and theirs is theirs. That does not mean I should not share to some of you all out their who want a few answers as I have looked for and still do look for THE answer to my condition, that nobody else seems to care what causes the root cause of the condition I have. So far it's been 17 months doing a few things right that I have been seizure free. One mistake I could be gone forever. Maybe that can be you now, but you do not realize it because what I believe and know is true with my brain is a myth to the rest of the seizure world aka EFA, CURE, ETP and others like the FDA.  I would like to believe I could live half my life seizure free, which mean I have 48 more years to live. The way I see if Monsanto & others keep having it their way, I may have to go to NIH to get a brain replacement and have a rust proof metal brain where no blood flow goes to the head or food additives, as the brain would be battery opperated powered, 1 full charge at the time of installing for a 100 year time span powered by pure loving thoughts as any meanness would be instant death. Who says that may happen for someone first, before our questions get answered.  All of this just makes you wonder.... Why we can't get our answers now?

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.