Research Impact: Refractory Epilepsy

Channing Seideman shares her journey with refractory or treatment-resistant epilepsy, how it impacts her day-to-day, and the research that Dr. Detlev Boison is doing to understand how to block the enzyme that prevents the brain’s natural seizure-terminator, adenosine, from working properly.

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I first had seizure that was at 15 years old at my brothers wedding. I stopped breathing and never was treated and went years before my bf found me after working long day going to bed he woke up to me seizing and I stopped breathing and lips turned blue he called 911 immediately this was in 2013 and I was first diagnosed with epilepsy as time went on my seizures only got worse and no medicine helped I had to undergo rigorous tests and was diagnosed with Refractory/recurrent seizures and I took advice from my dr for VNS Vagal nerve stimulator which didn’t work either. Everyday is a struggle I used to be a straight A student and was able to hear something once and know it but now I have issues remembering little things. I was to the point where I just wanted to die and my bf found me trying to commit suicide but since then I got my dog Rambo and he has changed my life! Rambo slept with me everyday and now he doesn’t sleep with me but he does sense my seizures and he was never trained but he constantly checks on me before and after my seizures and he stays by my side and licks me until I get out of it. I’ve lost bladder control several times and fallen several times from seizures. I just hope we find a cure and for those of you guys out there that deal with refractory seizures understand what it’s like. This video said a lot of stuff I’ve dealt with and I love seeing her back on her horse I was a farmer but can’t work anymore due to my health issues including my seizures but they’ve found more which I don’t like talking about but would like to help others with seizures understand that they can still live a good life even though we can’t do a lot of things most people can we can talk and have someone who understands unfortunately my own brother thinks it’s all in my head and refuses to look at my medical records and my dad said well I know people that lie to get pain pumps put in to get out of working well I’m not a liar and I think my seizures began when I was a kid Bc of memories I have of certain things and they used to strap me on this board at dentist which I have fear of dentists bc of this but I’m facing my fear after 16 years I’m going to dentist for consultation and stuff. Anyway I wouldn’t mind getting to know others out there that deal with refractory seizures and I’d like to one day be able to share my story along with others on a platform that people can see to have more awareness of this disease/disorder! God bless all of you

[subhanniz]

I don't have any problems in writing after applying VNS, Mayo Clinic epilepsy my same problem JME