Adults with absence seizures

Posted by sophiasmith01 @sophiasmith01, 4 days ago

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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@sophiasmith01
It's important to be patient, as you're still young. The journey with seizures can be unpredictable, and while no one can say for certain if or when they will stop, many individuals find that absence seizures can become less frequent by late adolescence. It's worth noting that absences can start or occur at any age.
In my personal experience, my first seizures began at 14 and were tonic-clonic. Absences started later. I had mostly tonic-clonic seizures, as well as focal aware and focal impaired seizures, along with status epilepticus. I continued to experience absence seizures into my 40s. When I was young I took Zarontin which helped my absences. What medicine/s are you taking. Research suggests that around 20% of children may continue to have these seizures into adulthood. It's also possible for absence seizures to change into tonic-clonic or other types, or even coexist with them. My seizures stopped after 45 years, for the most part.
Remember, every person and journey is unique, and it’s important to live your life to the fullest and to stay hopeful.
Take care,
Jake.

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Welcome to Mayo Clinic Connect, @sophiasmith01. Sorry to hear you have never grown out of your absence seizures like you were told you would. Good that you have connected with @jakedduck1.

Tagging a few others in the epilepsy support group here who've mentioned absence seizures to see if they have some thoughts for you @kimroepke @lynette1975 @gimmegum. @brjudevo79 @snelson @tlb101175 and @santosha also may have some input.

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My daughter is 23 and has them. At first, that was all she had and they were very short and hard to notice. We didn't know they were seizures for a year or two. It is hard to tell when they began. Then, she began sleeping at weird times, falling down, and having memory issues. They mostly stopped when she began Trileptal but she was not consistent with taking it and she was in college and would go out drinking, which always caused seizures over the next 24 hours or so. She was still driving, despite us advising her not to, and she had her first grand mal while driving, causing a severe accident. They added Keppra and while that mostly stopped the grand mals (except when she would drink usually), she suffered from extreme depression and we believe Keppra was part of the problem. She doesn't live with me now but over the last year I witnessed many absence seizures that ranged from mild to severe. During mild ones, she can pick up where she left off and might feel nauseous afterwards. During severe ones, she feels extremely hot (and will sweat) and then cold, smells, tastes, or sees things that aren't there and can end up seeing a past nightmare play before her mind. Sometimes, she talks during them and tells me what is happening but other times, she is not aware at all. It really is crazy how different each seizure can be.

Hers are caused by an abnormality that is a neural tube defect, called an encephalocele. Mayo offered brain surgery as a potential cure but she turned it down, wanting to live a "normal" life as a 23 year old and feeling that brain surgery was too extreme.

Did your doctors find a "cause" for yours?

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Mayo Clinic tends to lean towards mine being caused by a febrile convulsion that I had when I was 15 months old. Then I didn’t have severe issues until I was in my upper 40’s. I had the MRI laser ablation surgery in March 2020. It was life changing for me. I do have random seizures, but nothing like I was having. I was having them daily and usually numerous ones. I’ve had less than 5 the entire year, to our knowledge. I highly recommend the surgery.

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@sophiasmith01
Welcome to our group! We have wonderful exchanges of experiences and offer great mutual support here.
My seizures are mostly focal ones that start in the left temporal lobe and also impair my consciousness. These are different from absence seizures, which are generalized seizures (also known as petit mal). I don't know much about absence seizures, so I can't add much insight on that topic. However, I'm sure you'll connect with other members in our group who have absence seizures, like @jakedduck1 and @adoptivemother, who have already reached out to you.
Did your seizures begin when you entered adolescence? I ask because epilepsy often first appears during the teenage years due to hormonal changes, as it also happened to me.
I'm also including a link to a discussion started by @rchllmorgan specifically about absence seizures that you might find helpful.
https://connect.mayoclinic.org/discussion/daughter-with-newly-diagnosed-generalized-absence-seizures/
Take care!
Chris (@santosha)

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@sophiasmith01 I was told the same thing when I was that age and prior to reaching that age. I was told by my epileptologist of current, that a doctor should never make that claim. Seizures are unpredictable and we never know when or if they will go away. For many years, I believe the same thing you believed, in a heart-to-heart discussion with my doctor, he flat out, told me that should not have been something that was ever promised or told, he felt it was misleading to me, which really it was. I was under the impression for many years that they would go completely away and I would be off the medication, but that is not the case. I went 30 years, not having seizures, but that was only because I was on the medication that controlled them, when I suffered brain trauma, the seizure started back up again, it was a process of having to start all over and look at the situation with different eyes. I know I will have this my entire life, I live with it, I don’t fight it, it is part of who I am. There are things that I can change, however, I have come to accept that this is part of who I am. I find that if I don’t fight it, it is easier on my mental well-being. Nobody likes seizures. They are painful in every way possible, however, I find that stain positive is one of the most positive uplifting things that keeps me going in a positive direction. I suffer from absence, and generalized onset focal seizures, as well as tonic clonic. Currently, I am, over a year and a half seizure free on meds, however, I focus on my wellness.

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