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

Posted by kdad46yr3kids @kdad46yr3kids, Aug 31 5:26am

I’ve had seizures for years but only first knew when responding to my daughter’s accident and visit to ER. Best place to have one but released 5 days later and after all tests no real results, medication, or diagnosis. That’s been 18yrs ago. Divorced for 10yrs so I had slight signs like bite marks on tongue and small blood on pillow case here or there but no none to ever really “confirm” since I lived alone. Then got married 8yrs ago, had back surgery to remove broke disc and had seizure and wife witnessed…I still don’t remember anything and no diagnosis or medication. So I stopped drinking, smoking, ate better, working out. Out of nowhere starting having things change like needing reading glasses when wearing my contacts, struggling with hearing, migraines, then starting noticing I could hear music at night when late and alone….i chalked it all up to getting older. Then about 5 weeks ago I started to shake uncontrollably late at night and tried to get to the couch. Couldn’t control myself hit the ground with full on seizure but eyes open and awake but couldn’t even respond. Went on and off convulsions for about an hour before my wife found me and called 911 when I started vomiting all over myself. Sent home next day and seemed like I was okay. Then 3 weeks later 3 am made it to bed and wife was watching TV and happened again. She stayed with me the whole time trying to calm me until I starting vomiting again and called 911, I was admitted, EKG, MIR, all types of tests and finally caught small specks in my temporal lobe connected to my new type seizures, given medication and claimed to have all the signs of classical temporal seizure disease….sound familiar to anyone else?

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

Chris Gautier, Volunteer Mentor | @santosha | Aug 31 7:50am

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

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kobe2026 | @kobe2026 | Aug 31 8:55am

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

keeg1010 | @keeg1010 | Sep 1 2:01pm

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

keeg1010 | @keeg1010 | Sep 1 2:05pm

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

gregd1956 | @gregd1956 | Sep 1 4:10pm

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

royanthony | @royanthony | Sep 2 5:31pm

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.

Chris Gautier, Volunteer Mentor | @santosha | 3 days ago

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

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