44 YEARS WITH EPILEPSY!

I have just rejoined Health Unlocked and am now a follower of Epilepsy Research UK. After dealing with Epilepsy South Africa for many years, it is wonderful to see so many other organisations supporting us with the condition. I hope to one day be an active member of you all!

[elsieadams]

It is good to be able to share our experiences with others and viceversa. I have also been dealing with epilepsy for 44 years. It is good to see such progress in some areas but there is still a long way to go especially in young children. They are many times misdiagnosed and given meds that do not work.

[Hidden in reply to elsieadams]

I totally agree... Even at the age of 16 we were used as 'guinea pigs', given treatment after treatment, medication which didn't work; only many years later did I find the correct dosage!

[elsieadams in reply to Hidden]

I was about to say the same thing as well as being called a freak all the way through highschool. It was a most terrible time when I think back that forced me to retreat into my studies and music. Even today I sense the reason why I have so little dedicated friends is because of such horrible experiences. My family stopped taking me along to special events as I was an embarrassment because of my condition. I am thankful that because of this I have become a very compassionate and dedicated person when trying to help out others suffering from various conditions.

With todays technology there should not be so many people still looking for solutions in controlling and diagnosing various types of epilepsy. When I read about stories on this site especially regarding very young children suffering and doctors still experimenting with various drugs it makes me very upset.If you can fly a spaceship to mars and gather enough info that it takes years to dissever , preform laser surgery to give perfect vision, enable us to be in contact with people all over the world on a laptop and so on and so on why are we still struggling to control seizures. We need a lot more research for sure.

[Hidden]

I totally agree with your comments. I have requested a review of my epilepsy as in South Africa I never had a cat-scan or MRI 'cos there were no Neurologists and more. At the moment I am on Phenytoin and Carbamazepine which has taken years to get the right dosages.

[elsieadams]

You may be very surprised at the results as these tests are very accurate. The final results of my retests about ten years ago showed that the base of my brain where there is supposed to be a filter like system is not present. This filter controls the serge of serotonin which happens when a person is extremely upset or extremely excited. The serotonin travels from one side of the brain to another on a regular basis since I found out that I am missing this filter I found that trying to keep myself as calm cool as possible has also helped in dealing with the changes one experiences with epilepsy. Our brain is a very amazing and there are many alternatives especially when you know the reason why.Good luck with your tests.

[elsieadams]

I still take all my meds for the epilepsy dilantin and cobazam which have works very well over the past number of years. But it is good to know the cause and how you may feel more confident and not worrying about whether or not you may have future seizures. Also take a look at what you eat avoid msg's, artificial, coloring , soda and very spicy food as our meds have over long term use affect our stomach and liver.

[Hidden]

I've never been tested properly and never told what part of the brain is affected... Coming originally from Zimbabwe we never had Neurologists and were sent to South Africa for testing. Again, nothing was known about epilepsy when I was first diagnosed so limited information was given.