Adults with absence seizures

Posted by sophiasmith01 @sophiasmith01, Jun 2, 2025

I am 21 years old and never grew out of my absence seizures like I was told I would. Is there anyone in this group who is an adult with absence seizures, or do you know anyone who is? I've never met anyone my age who has absence seizures, and I am just curious if there are people experiencing what I am.

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi @annestudio
So sorry to hear the ER experience your husband faced.
Since neither your husband's neurologist nor his PCP seems interested in reviewing these videos, I would encourage you to seek a second opinion.
Where are you currently located? There may be other members in our group living in the same region who could recommend an experienced neurologist in epilepsy, or an epileptologist.
Chris

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@santosha
We’re in Western MA near Springfield and Northampton. We’ve been paying a “Conceirge” PCP, thinking we’d get better care. But She is slow in responding and seems not to be proactive in our care. Maybe if you are over ninety, intervention is useless

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Profile picture for absentsenior @absentsenior

@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.

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@absentsenior this must be extremely difficult to go through alone. Do you have any family or close friends who will be with you after the surgery ? of course you want your own self back.
I Meditate with a Zoom group and Meditation since to help me stay more emotionally stable through these trying and difficult medical decisions
Certainly hope modern medicine can help you. I am sending you big comforting. Hugs.

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Profile picture for annestudio @annestudio

@absentsenior this must be extremely difficult to go through alone. Do you have any family or close friends who will be with you after the surgery ? of course you want your own self back.
I Meditate with a Zoom group and Meditation since to help me stay more emotionally stable through these trying and difficult medical decisions
Certainly hope modern medicine can help you. I am sending you big comforting. Hugs.

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@annestudio i have a sister and a best friend of almost 50 years that I am very close to and have walked side by side with me through this. I definitely would not have survived without them.

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Profile picture for annestudio @annestudio

@santosha
We’re in Western MA near Springfield and Northampton. We’ve been paying a “Conceirge” PCP, thinking we’d get better care. But She is slow in responding and seems not to be proactive in our care. Maybe if you are over ninety, intervention is useless

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@annestudio age is irrelevant when it comes to service that you're paying for. If you're paying for service and not receiving it, stop paying for it. Find a different doctor and trust your gut when it comes to their service.

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