More than 90% of my seizure happened when I was sleep

@jgu
Good evening,

Welcome to Mayo Clinic Connect.

I'm sorry to hear you're having these episodes

It sounds like you might have experienced a focal impaired seizure alright. Have you been having nocturnal seizures for a while?

Can you recall what time you went to bed, what you had for dinner, or any events leading up to or following the seizure? It's not uncommon for seizures to impact your memory for hours or even days before and after they occur.

Did you exhibit any unusual behaviors during the seizure, such as picking at your clothes, smacking your lips, or making repetitive movements? Did you experience an aura beforehand—perhaps a strange taste, unusual sights, or a peculiar sensation in your stomach?

When you woke up, did you feel confused? Were you aware that you'd had a seizure, or did someone have to inform you? Did you notice if you slept more soundly or longer afterwards?

I know a friend who experiences similar focal impaired seizures, and she often removes her clothes, no matter where she is.

Take care,
Jake

Hi Jake,
Thanks so much for your reply!
Do you know what is the difference between sleep-related hypermotor epilepsy (SHE) and focal impaired seizure? I have been having nocturnal seizures for about a year thinking it is the night terrors because they only happens at night or when I take a nap in the afternoon. A month ago, I had the same symptum during the day time. That made me so worried and went to see a neurologist. He told me I might have focal impaired awareness seizure. I normally go to bed around 10 pm. My wife told me that I will scream - Ar.. Ar.. normally around 1 am, or 5 am, 6 am. I do not have any body jerking or movement. Most of the time it seems that I woke up, I even talk to my wife, but my talk does not make much sense to her. I then quickly go back to sleep. If this happens 6 - 7 am before i normally wake up, I will wake up 5-10 min later not remembering anything at all. In the past month, I had 3 times day-time (non-sleeping) events. All invovled the creaming first (only few seconds), then response very slow, talking non-sense, no body jerking, maybe blinking eye lids, then re-gain awareness after 5 min, but not remembering anything happend about 5 min ago. I do not have any aura.
This happens almost every night now - very frustrated. Just wonder if anyone has the samething and what would be the best medication to try. I will have EEG, and MRI in about a week. Hopefuly these testing can provide more information.
Thanks again!

Jgu

@jgu
Good Morning Igu,
Welcome to this supportive community at Mayo Clinic Connect.
I am sorry you have been through those uncontrolled seizures during your sleep. You must be terrified to go to sleep by now, afraid of having a seizure. I can relate to you, because last year I had two seizures while sleeping.
I have temporal lobe epilepsy, and my seizures are mostly focal and occur during the day. My seizures usually start with an aura (a strange smell in the nose, taste in the mouth, and déjà vu episodes), evolving or not to a focal impaired awareness seizure. When the seizure starts, I also scream "seizure" when my husband is around. My husband mostly identifies my focal impaired awareness seizures by my blank stare and inability to speak during them. But last year, I had two tonic-clonic seizures (with body movements) while sleeping, and I urinated during the seizures. I cannot remember anything that happened; my husband told me everything. I probably could not notice the aura, which evolved to a focal impaired awareness seizure and later to a tonic-clonic seizure, because I was asleep. Perhaps the same happens to you, though you mentioned you also did not feel any aura during those 3 seizures you had while not sleeping?
It is not uncommon to feel tired after a seizure and just want to sleep afterwards, and to have difficulties expressing oneself after focal seizures.
You asked about which are the best medications to stop those seizures. From my understanding, it depends much on the type of epilepsy you have, which I understand will be explored in those exams you have already scheduled. I am also on Keppra (Levetiracetam) right now and it has been controlling my seizures well. But before this medication, I had tried 5 others and some of them did not control my seizures fully. Everyone is unique, as my doctor says.
I am adding a link from the Epilepsy Foundation on Focal Seizures, which might help you answer some of your questions. Educating myself on my epilepsy has been very beneficial to me in my journey.
https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-onset-impaired-awareness-seizures
I hope these exams scheduled in two weeks, will be very helpful in your treatment. Please keep sharing your experiences with us.
All the best!
Chris (@santosha)

@jgu
Hi Igu again!
Curious to know more about SHE, I have searched for it on AI and copied it here for you. But please, do also ask your doctor about it.

Sleep-related hypermotor epilepsy (SHE) and focal impaired awareness seizures are both types of focal epilepsy, but they differ in several key ways:

Sleep-related hypermotor epilepsy (SHE):
Occurs almost exclusively during sleep, particularly non-REM sleep
Characterized by complex, often violent motor behaviors like thrashing, bicycling movements, or dystonic posturing
Patients typically have preserved or only mildly impaired consciousness during seizures
Often involves the frontal lobe, particularly the supplementary motor area
Seizures are usually brief (30 seconds to 2 minutes) but can be frequent
Patients may be aware of their movements and remember the episode
Can be mistaken for parasomnias or sleep disorders

Focal impaired awareness seizures:
Can occur during wakefulness or sleep
Defined by impaired consciousness or awareness as the primary feature
Motor symptoms are typically more subtle - automatisms like lip smacking, picking, or staring
Can arise from any part of the brain, commonly temporal lobe
Usually last 1-3 minutes
Patients have little to no memory of the seizure
May have a postictal period of confusion
Previously called "complex partial seizures"

The main distinguishing factor is that SHE primarily involves prominent motor activity with relatively preserved awareness during sleep, while focal impaired awareness seizures are defined by the loss of consciousness/awareness regardless of when they occur. SHE represents a specific syndrome within the broader category of focal epilepsies, whereas focal impaired awareness seizures describe any focal seizure where consciousness is significantly affected.

Chris (@santosha)

Hi Chris,
Thanks so much for all the information!
You mentioned that you tried 5 drugs and finally on Keppra - which works for you. How long you were on those 5 drugs before to decide they were not working? And how long you were on Keppra that you see it controls the seizure? I am on Keppra for more than 20 days, not only I do not see reduction in my seizures. It seems my seizures happen more these 20 days.
I do not remember anything for all the seizures - all was told by my wife. I do not have much body movement during the seizure - just screaming Ar... Ar... I am very frustrated since I could not drive, not even safe to walk around the neighborhood.
Thanks a lot for your supports. I understand finding the right drug for me might take a long time...

@santosha
Thank you, Chris, for taking the time to respond to @ugj’s questions. Your insights are greatly appreciated.

@ugj
I find myself deeply curious about your diagnosis of SHE (Screaming Hypermotor Epilepsy). I’m eager to delve into the details and gain a better understanding of your experience. It appears that the most prominent manifestation of your condition is the intense screaming. Is that accurate? Perhaps it stems from the fact that these episodes are often nocturnal and can occur multiple times throughout the night. I sincerely encourage you to discuss this SHE diagnosis with your doctor for further clarity.

Similar to other seizure types, hypermotor seizures can be notoriously resistant to medication. I believe about a third of SHE patients are medication resistant. However, let’s hold on to hope for brighter days ahead. I experienced my own battles with uncontrolled seizures for an exhausting 45 years, until a fresh perspective from a new neurologist led me to switch to Carbatrol, a time-released version of carbamazepine that is akin to Tegratol. This physician advocated for seizure patients to avoid generic medications when possible. Interestingly, this drug is also prescribed for hypermotor seizures.

It can take time and patience to discover the right treatment tailored to your needs. If you’re currently on a non-extended release form of Keppra, it might be worthwhile to explore an extended release option and observe any changes in your condition. When I transitioned to the extended release formulation, it was the singular change in my regimen that ultimately led to the cessation of my seizures after 45 long years. Of course, it’s impossible to prove definitively that it was the medication alone that made the difference. Perhaps my seizures were destined to resolve on their own.

Wishing you all the best on your journey to wellness,
Take care,
Jake

Dear @ugj,

I want to encourage you not to let epilepsy dictate your life. I have found ways to continue engaging in activities that I enjoy, such as walking, swimming, and biking, even though I didn’t drive. Fortunately, I had a supportive network of people who looked out for me. While some individuals may feel apprehensive about having seizures in public, it hasn’t been a concern for me.

I understand that what you’re experiencing can be challenging and frustrating at times. However, I urge you to embrace life with a positive outlook. Having lived with epilepsy for 59 years, I have learned that even infrequent seizures do not diminish my determination to live fully. I believe that you can achieve this as well. It's important to accept your new normal and not feel ashamed or embarrassed about your diagnosis.

Wishing you all the best,
Jake

My pleasure, @jgu! Happy to answer your questions.
Between 2019 and 2020, I tried five different AEDs: Lamictal, Tegretol, Trileptal, Gabapentin, and Vimpat. I took each medication separately for at least three months, except one that triggered my first tonic-clonic seizure. Just one AED fully controlled my seizures, but it caused severe insomnia that made it unsustainable. The others reduced my seizure frequency but came with significant side effects that greatly impacted my quality of life. During this period, I was treated by psychiatrists and neurologists who, unfortunately, didn't take an individualized approach to my care.
In 2021, I switched to an epileptologist who prescribed pure CBD (Epidiolex in the US). While it hasn't completely controlled my seizures, I felt significantly better on this medication and was able to reclaim my life. However, last December, I experienced considerable stress due to my parents' health issues, which lowered my seizure threshold and required additional medication. My doctor added Keppra, which I've now been taking for five months with good seizure control.
I'm surprised to hear that your seizures haven't decreased with Keppra after 20 days. Most of the AEDs I tried in 2019-2020 (except the one that caused the tonic-clonic seizure) reduced my seizures within the first three weeks. I am not a doctor, but no seizure reduction could indicate that your dosage needs adjustment or that this particular medication may not be effective for you. I'd strongly encourage you to discuss this with your doctor.
Finding the right medication can be challenging and requires both patience and resilience. Don't give up – persistence is key in this journey.
I hope your upcoming tests provide your doctor with valuable insights that lead to an effective treatment plan for you. Please feel free to reach out if you have any other questions.
Keeping my fingers crossed for you!
Chris (@santoha)

@jakedduck1
Jake, thank you for your comment. It is always nice to know when one of our comments has added value and/or helped someone.
Chris (@santosha)

@santosha
Yes it is. I always look forward to your contributions.
Jake