Anyone had temporal seizures but fully awake only can’t respond, move?

Hi @kdad46yr3kids
Welcome to our group at Connect!
I'm sorry to hear your story, which somehow resonates with mine.
I began having seizures in my teenage years, but my epilepsy wasn't diagnosed until age 48, when my seizures became worse. My seizures started as auras (simple partial seizures) with strange feelings like déjà vu and unusual mouth tastes and smells. Over time, they progressed to complex partial seizures when my speech was impaired and my consciousness was somehow affected. Just like in your case, all my tests came back "normal" for years. Due to a lack of treatment throughout these decades, my epilepsy has evolved and my seizures have worsened. I was finally diagnosed in 2019, when I started treatment. I have temporal lobe epilepsy with small sclerosis on my left hippocampus.
I'm sharing a helpful resource about temporal lobe epilepsy that you might find informative:
Temporal Lobe Epilepsy (LTE) - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/syndromes/temporal-lobe-epilepsy
Have you been able to follow up with a neurologist or epileptologist since your hospital stay? What medications are you currently taking? How have you been feeling, and have you remained seizure-free since then? Just out of curiosity, how long ago did your seizures start and how old were you at that time?
I'm hopeful that with proper diagnosis and treatment, you'll finally get the relief you deserve after all these years. Please keep me updated on how you're doing.
Chris

have you had a pet scan, full head to mid thigh (your kneecaps)?
It may also be other issues nerve wise

Good morning,
I am so sorry to hear what's happening to you and that you have been struggling so long without answers. I know how frustrating it can be to. I have a son who is diagnosed with focal intractable seizures, migraines, autism, and cerebral palsy. The frustrating thing about an EEG is that they don't catch seizures unless you're having one while being monitored. So, my question is the same as Chris's...do you have a neurologist or epileptologist? If not, I would recommend getting one. One other option to check into is having an ambulatory EEG, which can be done at home. This EEG records periods of 24-72 hours (possibly longer) of brain activity. Just thought you might want to check into this. Hope this helps.
Take care,
Kerry

Me again. I would recommend looking on the Epilepsy foundation website for more information. Also, I'm not sure how long your seizures are lasting but I was told by my son's neurologist at Mayo Clinic, that if a seizure lasts more than 5 minutes, call 911. Good luck!
Kerry

Dear @kdad46yr3kids

You had a question… the answer is YES,I agree of what you said.. I’m there too. I had a brain-injury from 2012 from an accident a my bicycle just one block from my house.

It took me 8 years started from seizures. During these seizures where part of my brain was no ability of my thoughts. Ithitme eveni can’t know of what I did. I took me hospitalized uses a hospitals.

Today, I took the daily meds stopped reizure for the last4 years. But, a few mths ago, I forgot thatmorining meds and hade a “large’ reizure, but I understand was in my brain… but the feeling took me 10 hours to get back on my legs & control me body. Very thing was my understands of my brain, but could not my use in mymybosy.

Well, thx.
Greg D. @greg1956

I have empathy that you have experienced this occurrence. I was ready to have a medical procedure done this upcoming Thursday. Found out from the medical center that they would be using Propofol as the anesthesia. Did my research. You may wish to read an article I found on neurology.org It's date is April 08, 2025 It's content addresses seizure symptoms, giving an example of a 70 year old lady with what appears to be what you experienced. They used Propofol. I am canceling my medical procedure tomorrow until I get more answers. I want to know how the doctor will know whether I am having an actual or induced seizure while the procedure is taking place and what they would do about it. Perhaps I am being too concerned over nothing. I hope this helps all.

Hi @kdad46yr3kids
I share here with you the article @royanthony mentioned about propofol complications:
Recurrent Propofol-Induced Seizure-Like Phenomena: Unmasking a Rare Neurological Complication in Anesthesia (P7-2.003)
https://www.neurology.org/doi/10.1212/WNL.0000000000211490
Do you remember what kind of anesthesia was used in your back surgery?
Chris

I was wondering if anyone could point me in the right direction. I had my first seizure in May of 2023 week before mothers day. This happened in the early morning hours while I was sleeping around 3/4am. I did loose continence and totally out of whack had the scans and EEG etc everything came back normal. Fast forward to June of 2025 I had another around the same time and same ordeal as the first in my sleep again had MRI and CT but nothing else. MRI shows a Penal cyst but that was it got a neurologist that put me on Keppra without checking anything else out and stated I would probably never know the reason just be on this med the rest of my life. I had a sleep study done for sleep APENA which I knew I already had and have a CPAP and use the Nostril head gear and had another Seizure beginning of September this time no test had my med upped from neurologist was wearing my CPAP etc. Then yesterday I was at work and strongly believe I had a seizure while I was awake at work. Any advise anyone can recommend I really don't want another med or the dose increased but worry about driving to work etc. Please anyone help

Hi @crissyh76
Welcome to this Epilepsy & Seizures community at Connect!
I understand your anguish about not yet knowing what's happening to you and not having a full diagnosis. I lived with that uncertainty myself for many decades.
I'm not a doctor, but it sounds to me like you may have had tonic-clonic seizures with loss of continence during your sleep. I've experienced this myself. The last seizure you described sounds more like a focal seizure. I'm sharing here a resource of the Epilepsy Foundation about the types of seizures. It has been extremely helpful in understanding my epilepsy once I got my epilepsy diagnosis.
Types of Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types
Unfortunately, a clean EEG doesn't rule out epilepsy. It simply means that at the time of the exam, there were no epileptiform waves detected in your brain. Many of my EEGs were clean until 2019, when my doctor recommended I stay awake most of the night before the exam. I now understand this recommendation—lack of sleep is a common seizure trigger. That was the first time my EEG showed epileptiform waves. Here's another helpful resource from the Epilepsy Foundation on this topic:
I Have Seizures, But My EEG Was Normal. Why? - Epilepsy Foundation
https://www.epilepsy.com/diagnosis/eeg/what-if-its-normal
I have a few questions—just trying to understand your situation better: Were you instructed to sleep as little as possible before your EEG? During your September seizure, was your awareness impaired? Were you able to speak, or was your speech impaired for a while? I understand you were already taking Keppra when this seizure occurred—is that right? Did you possibly miss a dose, or had you experienced any triggers like stress or poor sleep beforehand?
Since you don't seem confident in your current doctor, I would strongly recommend getting a second or even third opinion if I were in your position. Ideally, consult with a neurologist who specializes in epilepsy—an epileptologist.
I also recommend avoiding driving until you receive a full diagnosis. Driving with uncontrolled seizures can lead to accidents and serious injuries.
I hope you get answers and an effective treatment plan very soon.
Chris

@santosha
I was experiencing a cold with my 3 one was taking DayQuil and NyQuil like around the clock didn’t take med for a day. Never had meds before this. 2nd one I had CPAP on etc. this ordeal at work was out of the blue and no rhyme or reason to why etc and this time for sure no missed meds etc. and EEG nobody said anything about sleep etc. got new doctor today gonna try a different med and wait for call about another EEG and see if this one shows anything. I am at a loss and don’t understand why after 48 years is this coming on now. I guess actually 46 years ha ha.