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Adults with absence seizures

Epilepsy & Seizures | Last Active: Apr 30 9:48pm | Replies (83)

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @absentsenior
Welcome to the Epilepsy & Seizures Group at Mayo Clinic Connect.
What are your biggest challenges right now? Are your seizures well-controlled at the moment?
Chris

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Replies to "Hi @absentsenior Welcome to the Epilepsy & Seizures Group at Mayo Clinic Connect. What are your..."

@santosha i'll apologize in advance and say I hate that question. With unaware seizures, you, of course, have no clue. Because I don't know if i'm having seizures or when i'm having seizures since I live alone.I've never felt a loss of time. I ended up coming to the clinic because I was losing long-term memory and after everybody telling me it was normal at my age. I trusted my gut and took myself to an neurologist, who advised me I had a seizure disorder.
When she retired, I applied to the clinic and thankfully, was accepted. And for the first time started getting answers.
The various medications for epilepsy have either been not effective or the side effects have been to difficult to live with.
Soon, I am being put before the committee for surgery to possibly implant a neurostimulator and will have an answer sometime in the next couple of weeks. Then I will have more decisions to make. Between the damage of the epilepsy and that of the medications, I am not the person I was and I want her back. At this moment in time, I only have to deal with social security and learning about Medicare when my epilepsy has affected my ability to learn new things. This should be a lot of fun.

@santosha biggest challenges right now
are changes in my ability to multi-task and my cognition and my motivation. I have a best friend and a sister who are both close and do the best they can to help. I've been alone most of my life and am used to doing for myself. Dependency doesn't come easy. The hardest part in the early days was everybody trying to remind me and help me remember, particularly vacations. Ultimately I put together a paper that explained the problem with my memory to help them understand those losses are no longer lost memories. They are events that never happen to me and there is nothing to recover. We have a forbidden phrase where I am concerned, and it is simply the words "do you remember?" A definitive diagnosis has been hard to come by.
And of course, i'm at the clinic, because they are the best to help answer that question and it looks like we're making progress slowly, but surely, but at least it's progress. I looked for and found this group because I know no one else with epilepsy, particularly at my age. I'm not sure what i'm looking for but at least now have the ear of people who know where i'm coming from.And maybe I will be able to help one or some of them in some way.