Anyone with nocturnal only seizures?

I had a complex partial seizure during the night in 1994. EEG did not show any abnormalities. But because my husband witnessed it and I was taken unconscious to hospital I was started on Dilantin. I stayed on the medication for 2 years ( so I could drive). I was seizure free til April,2025 . I woke up several hours later than usual and had bitten my tongue. Taken to hospital , EEG, discharged without a diagnosis. Then seizure in June, 2025. Again woke late, had wet the bed. A sleep deprived EEG showed left temporal lobe seizures. Currently on keppra and seizure free. My mother had epilepsy. I think stress is also a contributing factor.

Hi @eltje
Welcome to our group at Connect!
Your experience of living with undiagnosed epilepsy doesn't surprise me, unfortunately. I myself lived for decades with undiagnosed temporal lobe epilepsy with seizures on my left side, just like you. All my EEGs were clean until one doctor recommended a sleep-deprived EEG and that, just like in your case, was the turning point that finally brought my diagnosis. As I learned later, a clean EEG simply means that the person didn't have epileptiform waves or seizures during the exam. Later, with a specific MRI, a small mesial sclerosis on my left hippocampus was also identified.
Stress is indeed one of the most common seizure triggers. Identifying my triggers and learning to manage them has helped me greatly. I'm sharing here an article about the most common seizure triggers, as well as a discussion about them in our group:
Seizure Triggers - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-triggers
Which Seizure Trigger Is Your Hardest Battle? - Mayo Clinic Connect
https://connect.mayoclinic.org/discussion/which-seizure-trigger-is-your-hardest-battle/
I'm glad to hear you're seizure-free on Keppra, which is also one of the medications I take.
You mentioned having complex partial seizures and tonic-clonic ones. I'm curious, do you also experience auras before your complex partial seizures? Have you also had an MRI?
Chris

@santosha When I had my first seizure in 1994 I had 2 auras during the day and then the seizure in my sleep . First aura was like an out of body room spinning experience. The second was being frozen on my chair and not being able to get up to answer the door. My 2 seizures in 2025 were both in my sleep. No auras during those days. I did have an MRI Sept 2025. Occasional T2/Flair hyper intense foci relating to micro angiopathic changes. Increased T2 signal within right petrous apex. Impression: No acute intercranial process.
Looking at list of triggers I did take Benadryl the night of my seizure in April,2025. Major stress during 1994 seizure. I love my coffee but can feel my brain light up after a second cup.
Thanks for your feedback!

Hi @eltje
I'm glad to know that your MRI didn't show anything of major concern 🙏.
Just a thought — that feeling of being frozen and unable to react seems more consistent with a complex partial seizure than an aura, based on what my doctors explained to me after my diagnosis. During an aura, I can still react, but when it evolves into a complex partial seizure, I become frozen in the same way you described. During sleep, it's very difficult to identify for ourselves what kind of seizure we've experienced. I once had a seizure in my sleep and had wet our bed, which my husband was able to observe and identify as a tonic-clonic one.
Reading about different types of seizures on the Epilepsy Foundation website has also been very helpful in better identifying my seizures, making it easier to report them to my doctor. Here are the links to simple partial and complex partial seizures:
Focal Preserved Consciousness Seizures (Simple Partial Seizures)
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-preserved-consciousness-seizures
Focal Impaired Consciousness Seizures (Complex Partial Seizures)
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-impaired-consciousness-seizures
Stress is a well-known trigger for people with epilepsy. It's in fact my most difficult trigger to manage, as I mentioned in the discussion I shared with you.
Since caffeine seems to be a trigger for your seizures, even if they're currently under control 🙏, it may be worth trying caffeine-free alternatives and seeing whether you notice a difference. Give it a try!
Knowing that certain medications can trigger seizures, I always consult my neurologist before taking them — even some over-the-counter ones.
Let's keep in touch!
Chris

@santosha Thank you so much. I believe what happened to me in 1994 was a complex partial seizure and then a tonic clonic one in my sleep. I was totally unaware during the tonic clonic seizure. My husband called the ambulance and I only became aware in the emergency ward. It was like being reborn. I am sure both my seizures in 2025 were tonic clonic.

Hi @eltje
Thank you for sharing that extra information!
In temporal lobe epilepsy, seizures often follow a progression: an aura may evolve into a complex partial seizure, which may also evolve into a tonic-clonic seizure. When my complex partial seizures are intense, I sometimes don't even remember the aura. And when I experience a tonic-clonic, I have no memory of anything — not the aura, not the complex partial seizure that preceded it.
Do you have a similar experience?
Chris

My first seizure in 1994 included 3 experiences several hours apart. The first was at 11:30 am ( maybe an aura or a complex partial), then about4pm the complex partial and then around midnight the tonic clonic in my sleep.
Then I believe I was seizure free til 2025. I have no pre warning or recall when I have the tonic clonic seizures and they happen in my sleep. As I am widowed now it is only the after affects that tell me I have had a seizure ( bloody and swollen tongue or the wet bed. Does that answer your question? Please feel free to ask more.

Hi @eltje
Thank you for these extra details.
Like you, when I experienced tonic-clonic seizures during my sleep, I had no pre-warnings either. And the wet bed — just like yours — was a telling sign. The two other tonic-clonic seizures I experienced during the day started with an aura, followed by a complex partial seizure, leading into a tonic-clonic, all in a row.
Thankfully, you're seizure-free today on Keppra. How long have you been taking it and how have you been feeling? Are there any major challenges you're currently facing that you'd like to open up and discuss?
Chris