Adults with absence seizures

@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.

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.

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?

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.

@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)

@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.

I have a question I recently started experiencing something weird. Whenever I was talking to someone in the middle of me talking I would just stop talking and stare off for a few minutes. It would take them calling my name several times for me to respond to them. After these episodes I would feel disconnected or out of sorts for the entire day. I had a MRI done on my head back in 2019 when I started experiencing migraines they didn't find anything wrong with me. I googled what I was experiencing and I found out its called an absence seizure. I never really had these my entire life is this something that you just start having? I am 50 years old I know that my niece was diagnosed when she was 16 with juvenile epilepsy. When my sister turned 30 she expire ended two seizures out of the blue they did all sort of tests and never really could find out why she had them. If its an absence seizure I'm having them more frequently like just this week I had the same feeling of being disconnected and totally out of it. At first I thought it was my new meds but that feeling didn't last long and it wasn't all the time. Unfortunately I can't get into the neurologist until December so I'm trying to learn about this and what questions I should be asking when I do go to the neurologist. Can someone please help me understand?

@dolphfan
Welcome to our community at Connect.
It's great that you're starting to learn more about epilepsy and seizures. Learning about epilepsy and my seizures has been extremely helpful in my journey, which started in 2019 when I was diagnosed with temporal lobe epilepsy at age 48.
The symptom of non-immediate recovery that you mentioned after your seizures seem more similar to that one of complex partial seizures, also known as focal impaired awareness seizures. Complex partial seizures are often confused with absence seizures.
Absence seizures are generally generalized seizures, meaning they begin in both sides of the brain simultaneously. These seizures cause brief "blanking out" or staring into space episodes. They are very brief and have an immediate recovery.
Complex partial seizures are focal seizures, meaning they start in one specific area of the brain. The symptoms are varied depending on where the seizures start in the brain (temporal, frontal, occipital lobes), and may include staring, chewing, making odd movements, mumbling, running, screaming, or seeing things. The seizure duration is also longer, up to 2 minutes. Awareness in these seizures is impaired, leaving the person very confused afterwards.
I'm sharing here some links with more details on both types of seizures:
Absence Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/absence-seizures
Focal Impaired Awareness Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-onset-impaired-awareness-seizures
If I were in your place, I would first try to understand with your neurologist what kind of seizures you're having and get a full diagnosis of your epilepsy. If possible, you could ask a family member to video you during a seizure. This could be extremely helpful for the diagnosis.
You mentioned you are on new meds. Are these meds anti-epileptic drugs (AEDs)?
Did your sister continue to have seizures after those two episodes you mentioned?
Chris

@santosha
thank you for explaining the difference of those seizures I didn't even think about the o e you mentioned. I am definitely going to do some more research on that seizure before my appointment in December. As far as I know with my sister she only had the two seizures they said it was from when she bumped her head when she was younger because they really didn't know why she suddenly had two seizures within 6 months. The meds I just started one was a mood stabilizer and the other was a pain med. I know it wasn't the pain med only because I felt completely out of it for the one day my eyes were squinted like the light bothered them.. However the next day I was fine totally normal no problem.

My pleasure @dolphfan!
Thank you for sharing that information about your sister. An epilepsy diagnosis typically requires two or more unprovoked seizures, so it's wonderful that she hasn't experienced any since.
After my diagnosis, I discovered that certain mood stabilizers can actually increase seizure activity. A psychiatrist prescribed me a mood stabilizer about a year before I was diagnosed with epilepsy, and it made my seizures worse.
Have you reported to this doctor who prescribed this mood stabilizer to you?
Chris