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.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for absentsenior @absentsenior

@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.

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@absentsenior
Good Morning!
Sorry for not replying before, I was on vacation last week.
Accepting changes, especially cognitive ones, is incredibly difficult. When I was first diagnosed, accepting epilepsy and all the changes it brought to my life was one of my biggest challenges. I truly understand what you're going through.
What made a tremendous difference for me was working with a neuropsychologist since my epilepsy diagnosis. In those earlier years, she helped me come to terms with my condition and the ways my life had changed. She also taught me strategies to work around my cognitive difficulties and introduced exercises to help me keep my mind engaged and active.
Have you had access to this kind of support? If not, I can't recommend it enough. Working with my neuropsychologist has given me the strength to keep moving forward.
Chris

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Profile picture for 27angel @27angel

I agree with you cognitive and memory mostly short term is so haunting. I have to remember my lovers and its a struggle to understand where was we before the seizure. Like I had it all in place. My body keeps stiffing and I continue to remember I had a high sense of learning and talking lately I been silent just trying to remember daily events. so forgetful not on meds yet. I must remember my appointment with Ohio health I write it down then forget where I placed it. I do remember my friends but the housing program keeps kicking them out so its a struggle to remember me since I don't they may not be perfect but they help me remember who I was and I have to know if people around me are safe to prevent a seizure again I am debating a new treatment do to I may loose more knowledge going fourth I will spend time with all of you so when I go here or with Ohio it wont be odd. I be able to rest and read trying to staff off social media for a while just remember my studies and how smart I am I need my brain to have a sharp six sense reading books revelant to me.

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@27angel we in this together doesnt have to be perfect our bodies went thru alot but we here I just seen the national they lost alot tears to tell me I am not alone with a differnt life all will saulte soon we will have our memorial of completness thsi is what my brain remember no spell check so I get it

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Profile picture for 27angel @27angel

I agree with you cognitive and memory mostly short term is so haunting. I have to remember my lovers and its a struggle to understand where was we before the seizure. Like I had it all in place. My body keeps stiffing and I continue to remember I had a high sense of learning and talking lately I been silent just trying to remember daily events. so forgetful not on meds yet. I must remember my appointment with Ohio health I write it down then forget where I placed it. I do remember my friends but the housing program keeps kicking them out so its a struggle to remember me since I don't they may not be perfect but they help me remember who I was and I have to know if people around me are safe to prevent a seizure again I am debating a new treatment do to I may loose more knowledge going fourth I will spend time with all of you so when I go here or with Ohio it wont be odd. I be able to rest and read trying to staff off social media for a while just remember my studies and how smart I am I need my brain to have a sharp six sense reading books revelant to me.

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❤️

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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 I understand no one should be alone with a seizure I am surrounded by hundreds of people to help keep me sharp at every day life. I don't want to forget society and how swell I am at payback and psychological appearances like spelling is hard so I am using typing tests to keep me sharp or reading tons of books then hop back on also stuttering and muscle cramps keep occuring I just strength until I get me seizure meds from ohio

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Profile picture for absentsenior @absentsenior

@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.

Jump to this post

I agree with you cognitive and memory mostly short term is so haunting. I have to remember my lovers and its a struggle to understand where was we before the seizure. Like I had it all in place. My body keeps stiffing and I continue to remember I had a high sense of learning and talking lately I been silent just trying to remember daily events. so forgetful not on meds yet. I must remember my appointment with Ohio health I write it down then forget where I placed it. I do remember my friends but the housing program keeps kicking them out so its a struggle to remember me since I don't they may not be perfect but they help me remember who I was and I have to know if people around me are safe to prevent a seizure again I am debating a new treatment do to I may loose more knowledge going fourth I will spend time with all of you so when I go here or with Ohio it wont be odd. I be able to rest and read trying to staff off social media for a while just remember my studies and how smart I am I need my brain to have a sharp six sense reading books revelant to me.

REPLY
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

Jump to this post

@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.

REPLY
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

Jump to this post

@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.

REPLY
Profile picture for absentsenior @absentsenior

I am 69 and was diagnosed with "Focal Unaware TLE" about 8 years ago and have been with the clinic about 5 years.

Jump to this post

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

REPLY
Profile picture for ambo2006 @ambo2006

Hi all,
Just after some advice, I have had childhood absences since I was 3, I am now 19 and still have them. Over the last few years they have become much less and much quicker, with them being no longer than 1-2 seconds. I have had in the past a few tonic clonic seizures, my most recent was in June.
I really really want to drive and seeing all my friends drive makes me a bit annoyed as it’s something I want to do. I was on Euthsauxamide and now on Lamotrigine , and on average getting 3-5 a day and generally seem to be in the morning.
Is there anyone that found out if a different lifestyle has helped and what have you done? I’ve been looking into the keto diet but not sure how effective it is? I’m nearly at the max on the Lamotrigine.
Thanks

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Hi @ambo2006
Welcome to the group, and thank you for sharing your story with us.
In terms of lifestyle changes, what's helped me most has been learning to identify and monitor my seizure triggers using the Andrews-Reiter Approach. If you're interested in exploring this, I highly recommend this workbook:
- Taking Control of Your Seizures
https://www.amazon.com.br/Taking-Control-Your-Seizures-Workbook/dp/019933501X/ref=sr_1_5
Here are also a couple more resources on the Andrews-Reiter Approach:
Stopping Seizures Before They Occur: The Andrews-Reiter Approach and Beyond


Andrews-Reiter Website
https://www.andrewsreiter.com/
Regarding the ketogenic diet - I know someone with a rare form of epilepsy who's had great success with it, though I haven't tried it myself. It definitely requires close medical supervision to implement safely and effectively.
Here's a great resource to learn more:
The Charlie Foundation
This nonprofit provides comprehensive information about ketogenic diet therapies for epilepsy
https://charliefoundation.org/.
Have you had a chance to discuss the keto diet with your neurologist yet? He or she can help you determine if it might be a good fit for your specific situation.
Chris

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I am 69 and was diagnosed with "Focal Unaware TLE" about 8 years ago and have been with the clinic about 5 years.

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