Adults with absence seizures

@msaneurysm
No, I don't know for sure what caused my seizures. Perhaps a head injury when I was a kid. I believe my friend hit me in the head with a baseball bat but I have no recollection of that incident.
I developed generalized tonic clonic seizures in my early teenage years. I started having daily tonic clonic seizures along with absences (although not often and focal aware and focal impaired seizures. At age 14 or 15 I went into Status Epilepticus for the first of many times resulting in induced comas to stop the seizures.The longest was 8 months.
I had a difficult time accepting my seizure disorder. It took me about 2 years to come to terms with my new normal. I was kicked out of school. I understand they had no choice since I was either seizing, post-ictal or asleep. I wasn't conscious long enough to be able to study or learn anything so there was no reason for me being there. When I had a seizure someone would come pick me up, take me home and I would sleep until time to go to school the next morning and then it started all over again. I went to a couple of psychiatrists
who I believe were escapees from an insane asylum. They were crazier than I was and were only guesing about the cause of my seizures. I resented them guessing. I went once to each psycho psychiatrist, and never went back.
After the first two years I accepted my epilepsy and didn't let it affect my life. I swam 5 miles a day until multiple surgeries on my shoulders interfered with range of motion and my freestyle swimming ability.
I used to have absences also along with focal awareness & impaired seizures but most frequently my seizures were tonic clonic with no warnings. Just drop and out. I had seizures lasting from about 2-3seconds with occasional 20-45 second (absences) up to 20 minute (tonic Clonic) & convulsive status epilepticus seizures.
It's very sad how many people can't come to terms with their seizures. Those people suffer unmercifully with stress, anxiety, and depression. Some say stress is the most often reported seizure trigger with anxiety and depression lowering the seizure threshold. I know a man who refuces to come out of his apartment because he doesn't want anyone to see him during a seizure. And then there is the stigma of epilepsy. It's amazing how many ignorant people there are and how they put others with epilepsy down to build themselves up. And those who make cruel remarks like, "people like that belong in a circus" and those who equate people with epilepsy with the devil, and the religious folks who invite you to church to perform an exorcism and rid you of demons that are causing your seizures. I was told by a potential employer "we don't hire cripples" she tore my application in half and threw it in the garbage. When I have a seizure, I just fall to the ground since I usually have tonic clinic seizures and shake like a fish out of water. I actually think some people enjoy watching others suffer. I've had over 13,300+ seizures in the last 60 years. My last seizures were in the spring of 2024 because my doctor refused to refill my medication so I ended up in the hospital and had six seizures. When I got out of the hospital, I went and got my medical records and believe it or not they said "patient was noncompliant with his medication. Go figure??
Anyway, I'm sorry you're having seizures and I hope the doctors get them under control. Have you tried Zarontin or Depakote for your absences. Granted they are first generation meds but just because is old doesn't mean it's not effective. I take Carbatrol and Phenobarbital that control my seizures, both first generation drugs.
What medication do you take?
Blessings,
Jake

I am an adult with absence seizures. I have one about every 4-6 months.
Would you like to share any other information about yours, such as how long they last and if anyone has observed them, what do they say your behavior is like during one?
How is it effecting your life?
How do you feel right before one occurs?

Hi @msaneurysm
Welcome to our group!
I haven't personally experienced absence seizures, but many of our members have, and I hope they will share their experiences with you. I'm reaching out to a few of them now — @babycat @cancersurvivor05 @crysdickson — in the hope that they will pop in and offer some insight.
Chris

Hi there. I’ve only ever had alcohol withdrawal seizures before,… and am now on keppra twice a day and had been doing very well. And had been seizure free for at least some months. (Maybe since I’ve been sober) I am 8 months sober now, but I had a very bad one last Sunday and ended up in the er pretty much unconscious all day for no apparent reason that I could figure out? I’m sooo frustrated as my plans are to hopefully finally be able to get a drivers license and be able to work now..😞

Hi @kim721
Welcome to our group!
I know firsthand how devastating it feels to have a seizure after months of freedom. I went through something very similar last year, after almost 8 months without one, so I truly understand your frustration.
First, congratulations on 8 months of sobriety — that's a remarkable achievement, and it matters enormously for your overall health and seizure control.
A couple of things worth reflecting on: in the days before last Sunday, were you sleeping well? Had you been under any unusual stress? Both sleep deprivation and stress are among the most well-known seizure triggers, and sometimes a breakthrough seizure has a clear cause once you look back carefully. This article from the Epilepsy Foundation may be helpful:
Seizure Triggers - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-triggers
Also, have you had the chance to speak with your doctor about this episode yet? It's worth discussing whether your current Keppra dose still needs adjusting, as @jakedduck1 has already mentioned.
One difficult Sunday doesn't erase the progress you've made — keep going, and those goals will come!
Chris

@santosha I did reflect back on the few daws beforehand and I know I had been more stressed with things going on that I couldn’t control, I also hadn’t been sleeping well and that could have been a trigger. But as well as my keppra doses I take topamax for seizure control. But, I do have a doc appointment coming up soon and hopefully will be able to get n to a neurologist after that as soon as possible to get it figured out…

Hi @kim721
It sounds like stress and poor sleep may well have played a role in last Sunday's seizure.
I can share from my own experience: once I became more attentive to my triggers and learned to respect my body's limits, I was able to reduce my seizure frequency without needing to increase my medication.
If I understood your message correctly, you haven't yet seen a neurologist — is that right? My strong advice would be to seek care from a neurologist with extensive experience in epilepsy, or ideally an epileptologist — it can help you find answers and a treatment plan that actually works best for you!
Wishing you all the best with your upcoming appointment — and please do keep me posted.
Chris