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frankie8569

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Hey everyone, I'm here to get support and hopefully make some connections. My boyfriend, Casey, has had epilepsy for almost 5 years and has not found an effective medication yet. Currently he's maxxed out on neurontin, lyrica, and now almost vimpat. His seizures are most likely being caused by scar tissue in both hemispheres of the brain resulting from the craniosynostosis he had as a child (he's 32 now). There are many questions still unanswered so maybe someone else who has experienced/is experiencing the same will be able to help us. Because Casey also has Chiari malformation (almost 15mm!) and hypophosphatasia (HPP), treatment is becoming increasingly difficult. Anyways, I look forward to talking with people and reading your stories. Thanks!
 
Welcome to CWE!
I just recently read about chari hopefully someone here will have some info to share there are alot of great people on here that care and have helped me.
and welcome again!
mike
 
Thanks for the quick reply, Mike! We've joined some chats before to see how people and families are coping with all this comes with, but got discouraged quickly due to the mass re-postings of web links and news stories. After seeing so many doctors, it's crazy how disillusioned they can be in not listening to their patients. Casey knows his body (just not his brain) and what he can and cannot do with their instructions. I'm thinking there are others out there (here) too that are similar.

Sarah
 
I've just been DX'x with seizures and the docs cant figure out what else is wrong with me I'm always in pain with my back and they tell me that with the issues they "dont see" I should be in so much pain and its all in my head so I can relate in terms but not in the same fashion.
like i said before hopefully someone here can relate in the same way.
mike
 
Casey has been to many neurologists and had numerous MRIs and CT scans to see what all is going on up there. For almost 4 years he was told that his cerebellar tonsil herniation was 7mm...until we saw yet another DR. who did and MRI in a different contrast and a different angle and saw it was actually 15mm. How the heck do you misinterpret something like that!? I just don't get it. I guess one solution is just to keep seeing different docs and getting as many opinions as possible.
 
very true it took a new neuro for me to get my dx of seizures so I understand that aboutseeing different doctors.
I;m in the process of seeing different docs for my back and other issues lol and good luck for casey as well!
mike
 
Hi frankie8569, just wanted to add my welcome!

I hope you and Casey can get a handle on his seizures soon. I don't know whether treatment such as neurofeedback will help given the structural issues in his brain, but if the meds no longer work, it might not hurt to try. More info about neurofeedback here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 
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