Anyone had weird blackouts/seizures? Difficult to explain.

@maryport
I can't say for sure however to me it sounds like you may be having focal awareness seizures. Are you taking anti seizure medications?
I have only had one Deja vu episode out of thousands of seizures. Poor quality sleep and tiredness are definitely seizure triggers. Are your seizures more intese if you are more tired than usual? Have the doctors diagnosed you with any particular type of seizure disorder or any particular of type of seizure? If you're taking any medication has the medication improved any potential seizure activity?
What if any medication's are you taking?
Jake

I was taking Frisium but stopped because it wasn’t making any difference. I did read that medication is of no benefit for non epileptical seizures. Thank you so much for your reply.

@maryport
As @jakedduck1 has already mentioned, it seems you are having simple partial seizures, also known as auras. I have lived with epilepsy for more than 30 years without knowing it. My seizures started when I was a teenager, having all those bizarre sensations you mentioned in your post. My mother has taken me to many doctors, and all exams done (EEGs and MRIs) came out normal, nothing could be diagnosed. Today, I know they were simple partial seizures.
But with all those years without treating my epilepsy, it has evolved, being finally diagnosed in 2019 (when I was 48 years old). My seizures that were initially just auras have turned into complex partial seizures and more recently tonic-clonic ones.
Today, I know that having normal results on those exams does not exempt you from the possibility of having epilepsy. All my EEGs performed before 2019 were normal. In 2019 I went to see a new doctor and he asked to repeat my EEG, asking me to sleep as little as possible in the night before the exam, giving me also some other recommendations for this exam. Result: This EEG has shown my epileptiform waves and I was diagnosed with epilepsy.
I have copied here a link from The Epilepsy Foundation that might be helpful to you: https://www.epilepsy.com/what-is-epilepsy/understanding-seizures.
Wishing you all my best.
Chris (@santosha)

@terrydalecasino
Maryport, you are not alone. I had a brain 🧠 TUMOR when I was (11) years old in 1970. Thank God it was BENIGN. But I had seizures most of my life, Petit mal complex partial. My neurosurgeon tried to treat them but with no success. So in 1978 I went to MAYO CLINIC to try and figure out what was causing my seizures. Best way for me to describe them is that I am CONSCIOUS PHYSICALLY BUT NOT MENTALLY. I just turned (66) years old 28December24. I have been totally seizure free since 2013. But I too would have an aura before each seizure. All this would take place in a 10-12 second time frame. First I would get like a bottomless feeling in my stomach, then a deja vue feeling then a strong heat sensation that would start at my neck and run down to my toes and back up again. When it got to my pelvic area I would get the feeling to have to urinate or move my bowels. Once going to the bathroom I would come out of the seizure.
My recommendation to you is try and get the newest CT scan. CRT CT.
Cinematic Rendering Technology CT scan by
Dr. Elliot K. Fishman from
JOHNS HOPKINS UNIVERSITY or MAYO CLINIC may already have it. But what Dr. Terrance Casino now retired found was that when the dead scar tissue from my CRANIOTOMY secronized with the electrical mini- volts it caused a high
amplitude spike up against the tempre- lobe of my brain and throw me into a seizure.
After Dr. Casino took me off the (6) anticonvulsant drugs that my neurosurgeon had me on and put me on Tegratol
(carbamazipine) and
Mysolin (primidone) my seizures went from (6)-(8) a day to maybe (1) a month and eventually (0).
But try and get that newest CT scan, Cinematic Rendering Technology CT scan to see what is going on in your brain 🧠 that is causing all this.
I hope this has been helpful to you; but just remember YOU ARE NOT
ALONE!!!! Feel free to message me.
I wish you the best of luck 🤞🤞🙏🙏 and I will pray 🙏 for you. GOD bless.

@maryport
So were you diagnosed as having non epileptic psycognenic seizures?
Jake

No Jake I just presumed that. There is no evidence of anything wrong in scans.

@maryport It sounds like seizures. I know that when I have even the small petit mal, now called absence seizures, I get an aura before I have them. I also get an aura with the tonic clonic seizures before onset. The auras are similar in some ways however with the tonic clonic seizures, I lose consciousness, for very long periods of time and do not remember anything about the experience except prior to the seizure when I have the aura. You are not alone, this is a safe comfortable space to learn from many people and the experiences they endure and learning from one another in the balance of everything. I have found great comfort and knowledge from many people, moderators in this clinic. Please know, you are not alone. Sending positive vibes, and comfort. I would talk to your PCP or GP and see what they recommend, and plot a course forward. Also, journal when this happens, and what you experience, I found that journaling creates a record to show your doctor, and gather insight from them.

Thank you - very much appreciated.