Hello

[Going Postal]

Hello everyone. I have never tried this before(support groups) but i really need people to talk to that understand what i am going through. I was diagnosed with e at 15, which was a great time to start because we all know how brutal the teen years can be. Over the years i have lost friends, jobs and basically all hope of a decent future because of E. About 10 years ago i met my wife and moved to Australia. She has been very supportive and helpful with my condition. I actually went 5 years without 1 seizure and without taking any medication,then about 2 years ago it started up again with a group of extremely violent grand mal seizures. I then went another year and a half until a month ago when i was back in the hospital because of numerous seizures more violent than before the others. Luckily i am able to notice when these are about to happen about 8 hours prior to "The Posession" so i can lie down and try to go to sleep. i was very happy before this all started but now im back to my depressive state again which is causing stress on my family but i cant help it, nothing seems to work.

 

[alivenwell]

Five years is a great span. My interval without them is slightly longer. I found stress management was a great help along with a start of Lamictal.

Was there a change in the appearance in medications recently? Some people find they get seizures simply from switching from one generic to another generic; or brand to generic.

 

[Going Postal]

Changes

I was happy with it. Not anymore.

There were no changes, i have had problems with my body building up a resistence to medications. I would say i have another 6 months to a year before i have to change again

 

[Nakamova]

Hi there Postal, and welcome to the site!

The medication merry-go-round is so frustrating -- have any of your docs looked into alternative treatments like neurofeedback and/or nutritional apporoaches? There's a lot of information here about these options.

It's great that you get such good support from your wife. Epilepsy takes a toll on the emotions and spirit as well as the brain, and there's a strong correlation with depression. Have you tried seeing a therapist, or considering changes in your routine/diet that might help alleviate stress? I know that's hard to do with tonic-clonics looming, but I wish you the best, and hope you find good support here.

Best,
Nakamova

 

[RobinN]

Hi Postal - WELCOME to CWE
My daughter began having seizures at the age of 14. Right before she started HS. I agree with you it is a difficult time to develop this disorder. She has persevered though. We tried four medications and the side effects were unacceptable. I have been pursuing nutritional changes ever since.

We also did Neurofeedback, and I think this made a huge difference in training her brain not to seize. Cognitive abilities improved, and along with the diet, we are seeing incredible lack of seizures. Not sure what is in front of us, but we actually are going to go get the paper work for her first permit to drive. I figure she needs to have an adult with her at all times for 6 months. Hoping this will help her focus on the reasons to eat nutritionally sound and remain healthy.

There is some great info here. I hope you find something of interest.
Hang in there. We all know how you are feeling.

 

[Going Postal]

Ive looked into the diets and tried some different herbal remedies but with no luck. I guess i have to keep trying, it just gets very depressing at times, but i know its the same for others as well

 

[Bernard]

Hi GP, welcome to the forum. :hello:

Maybe you will find something useful here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/