Seizures in the Night - What are the Causes and What can be Done?

Night time seizures or Nocturnal epilepsy is a unique type of epilepsy when seizures happen during sleep. The causes and treatment can be different than other types of epilepsy.

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#DrOmarDanoun #Epilepsy #NoctunalEpilepsy #EpilepsyAwareness

[DrOmarDanoun]

If you would like to make a consult with Dr Omar Danoun, age 16 years and older, please call or email the International Patient Services at Henry Ford Hospital and get your appointment if you are outside the USA: Office Hours: Eastern time 8:00 am –5:30 pm Mon-Friday, excluding holidays

Phone: [phone]

In USA call the clinic

[shawnhassanpour]

I had my first seizure when I was 60. It continued and sent me to the hospital 8 times. They tried all kind of medications on me. Finally, a young doctor in UCLA put me on a combination of 200mg of vimpat and 600mg of lamotrogine a day, and I have been seizure free for the last 4 years.

[SOSULLI]

I got diagnosed with epilepsy when I was 20 with my first tonic clonic seizure. I ONLY had seizures during the day, with no apparent triggers for my first 5 years. Then I suddenly had a nocturnal tonic clonic seizure for the first time. Then I NEVER had a seizure during the day. Only during the night for the next 5 years (I'm 30 now). Heavy tonic clonic seizures, when waking up no memory, no sense of balance, tongue bites and breathing in is painful for 2 days and migraines.

Medication doesn't help well and scans show no specific location. And relationships are impossible.

Imagine finally getting your masters in psychology in 7 years, and not being able to work anywhere, because after every seizure I'm out for 2 days.

*I hope the people here with epilepsy can still live a functioning life with friends, family and goals for happiness.

[bjlyyfn]

I'm 69 years old and just started having seizures last year in November. I have had 6 so far. I was on 1000 mg of Kepra and still had a seizure. They took my blood and told me to up my Kepra to 1500 mgs and sent me home again. My seizures only happen when I'm asleep. Thank you for explaining it better to me.

[keno-o]

I had bad nocturnal seizures back in the day. I had a nasty head trauma as a preschooler, and it wasn't until around 2 years after when I had my first attack. No one knew what it was because it was only tonic, not clonic. For a few years, my parents were baffled by my condition because they thought epilepsy, which they also call seizure, is only clonic, with all the jerking and stuff. When I had my first EEG (electro encephalogram) almost 3 years after that attack, we found out several facial nerves are sending erratic synapses near or on the REM stage of my sleep, which causes me to loose conciousness, turn blue and become stiff, which could take anywhere between 5 to 10 minutes. Contrary to the name, it also happens to me during the day, when I take my siesta. Fortunately, it was properly diagnosed and I got the proper treatment. 13 years later, and I'm hoping I could be of help to another patient. 🙏

[artandfiction]

To everyone that has night time seizures, I recommend start sleeping on your side at night. I started doing that after getting sleep paralysis a few years ago, so it became a habit.
This was very helpful for me, because I have night time seizures now.

Update: I don't have nighttime seizures anymore. They were caused by my mental health and medication, I think.

[VividVerse]

35 year old female here, trying to understand and learn more about my type of seizures. To start, never had seizures before ever in my life. I was diagnosed about 7 months ago in October 2023 with nocturnal epilepsy.

This started with tongue bites that occurred during sleep. I assumed it was stress related at the time because my mother whom I lived with my entire life and help me raised my son, passed away unexpectedly 6 months prior (Oct 2022) to my first documented tongue bite. Within 48 hours of her death, my ex (history of alcoholism and domestic abuse) took advantage of her death and filed an emergency order that I couldn’t afford to fight and I lost primary custody of my 6 yr old son, who is now 8 (LONG story but no I didn’t do anything). It was just my mother, son and I since he was born, so after I lost them it was just myself. The stress and emotional pain was so immense that my period stopped for 6 months (menstrual cycle was normal since it started @12 years old). The tongue bites started when my period came back and my menstrual cycle has been normal since.

The tongue bites started occurring more and more frequently but progressively became worse. Then I started waking to unexplained bruises that also became worse. I didn’t seek medical treatment until it came to a head in October 2023. I woke up to a bloody shirt, my chin was busted, a cut on the bridge of my nose, right side of my face bruised, right shoulder bruised and of course a bruise, bloody and VERY swollen tongue. I woke up in bed, just as I had before falling asleep. I checked for signs of break in and sleepwalking but nothing was out of place. My dog was sleeping peacefully on the couch as well.

I took that day off of work but had to return the following day (not enough PTO). I looked crazy but tried my best to work. Job was in the county government motor vehicle tax office and required multitasking, communicating with the public and memory. I struggled with all of this, not even all my post it notes could help. My emotions were kind of fragile but I held it together until my boss called and complained that I wasn’t fast enough (yes she knew I was having symptoms of seizures). After going back and forth for several minutes, with my agreeing with her and explaining over and over how I was trying to adapt (post it notes etc), telling her I was trying my best, she said “well everyone else is doing it”. I again said I’m trying which at first was in a speaking voice and ended with me yelling and slamming the phone down. Felt like I was watching myself from the outside and it was extremely embarrassing. I ran to the bathroom in tears, almost broke my hand punching the tile wall. That comment hit a nerve because of the girl sitting next to me talking on her iPhone ear piece off and on ALL DAY. I was also the first on the phone carousel that day. Incoming calls started on my line, if I didn’t answer it went to the next, then eventually the girl who was on her personal phone. Needless to say I lost my job.

Since then I’ve been unable to work and became homeless. My epilepsy treatment has been inconsistent due to the housing insecurity, lack of funds and having to move several states away to my nearest family.

Something else to note, I was diagnosed with generalized anxiety disorder and major depression at 12 years old (after my menstrual cycle started). Then PTSD was diagnosed after my son’s father and I separated, shortly after I became pregnant. My mental health had been consistently treated and stable since my pregnancy. After a seizure, it exacerbates my mental health. The worse the seizure, the worse it affects my emotional wellbeing.

Also only one person saw one of these nocturnal seizures and called the ambulance. My first memory was waking up in the back of the ambulance after I had been loaded in on a stretcher. They didn’t keep me overnight.

I was not using any drugs other than those prescribed to me. I didn’t drink a single drop of alcohol either since before pregnancy.

I was initially prescribed Lamotrigine prior to the ER visit. That was changed to the generic form of Lacosamide which was changed last week after a suspected allergic reaction but also continuing seizures happening 2x weekly. The new medication is Oxycarbazepine, I’ve been on this for a week now. I had a seizure 2 days after being discharged from the hospital (Wed) and another this past Saturday. Since starting medication, the severity of the seizures has decreased but the frequency has increased. I can tell by minor cheek/tongue bites, bruises and a sudden shift in mood (extremely depressed and suddenly suicidal). The worst symptoms now are my balance becomes way off, severe muscle cramps and weakness, difficulty in speaking and remembering words (also things in general). I’ve also been told by the homeless shelter staff that I “lose my color” or become pale after a seizure.

Only one occurred while awake. This was right after I woke up (within 30 min). Before I felt suddenly nauseous, extremely anxious, heart racing. Ran to the toilet thinking I was going to throw up and ended up blacking out, waking on the floor an hour later.

Still learning about auras but the primary one is that it feels like an electrical impulse shoots down my spine and my legs spasm, have a muscle contraction. Sometimes I fall asleep but can’t move, can still hear but then wake up either to my legs spasming and/or gasping like I stopped breathing momentarily.

All this being said, I’m at my wits end. I WANT to work, to be independent and most importantly TO GET MY SON BACK.

Sorry for the book but yeah… main point is I’m wondering if there’s a connection between the menstrual cycle, trauma and seizures. I’ve heard of Catamenial Epilepsy but could someone have both Catamenial and Nocturnal Epilepsy? I also had a venous stent placement due to “severe stenosis of the right transverse sigmoid sinus junction” in Dec 2017. This started with vision loss and papilledema. Most recent CT scan from Feb 2024 mentions “chronic subdural hemorrhage, along the lateral margin of the right frontal lobe”. So I’m not sure if it’s a combination of hormones, stress, mental health, the stent, or the hemorrhage.

My appt with my new neurologist isn’t until June 20th. I’ve put all my medical documents in a folder and photos of my tongue bites, bruises etc plus a seizure diary. I’m hoping he’ll take the time to listen instead of brushing me off and making assumptions. Due to everything I’ve been through medically and emotionally I feel like there’s some dots to connect. I need solid answers because I can’t function like this. I’m on my own with not a dollar to my name. I’m getting desperate.

Edit: I have had 2 EEGs, both 30min while I was awake. First one said “abnormal EEG due to rare left temporal slowing”. The second says “findings consistent with at least a mild diffuse disturbance in brain function”. A longer EEG is needed while asleep but again, the housing instability has put that off. Hoping it’ll happen soon.

[LuminesBreezer--]

He explained the nocturnal seizures so well, and the waking up and suddenly yelling was delivered pretty damn well too Dr. Danoun. BY THE WAY. I can hardly wait until we meet again. Thank you and finding you is pretty awesome, when that gather of more knowledge is given about my current battle against my epilepsy.

[DanielKennedy]

I have seizures when waking up. Sometimes I can stop it. Its gotten so bad I dislocated my right sboulder 5 times over them! What sucks is im aware the whole time. It feels like im suffocating and im making weird noises. In the coming down fase, I hear myself nake a snoring like sound at 100 volume. Can anyone else relate? Its awful

[sulphuroxide]

I have seizures only when I'm falling asleep, I'm half awake, sometimes I can stop it.

[TheRenard]

I always hate when especially in the evening, after 8:00pm, whatever I'm doing in my bedroom, I unexpectedly doze off to one, and then wake up, and find myself coughing, bit my tongue 👅🩸🩸🩸😥 and then I think it's the next day, but it isn't. It's the same hour, before 9PM! This happened twice this year! I'm currently seeing a neurologist every about 6 weeks for a follow-up, which was highly recommend by my physician.

[Sami-rwch]

I was diagnosed with nocturnal frontal lobe epilepsy a few months ago. Unfortunately my neurologist is not as informative as you. Wish I could find one like you in AZ or NM. Very informative thank you! The medications I was on made my personality change and I was super aggressive- I didn’t recognize myself.

[basilkearsley]

Thank you for this video. It really helped understand my 7yo night time seizures

[junenriquez]

Thank you! 😃
Now i know clearly what is nocturnal seizure, and how it attacks me.
Clear information. 💜👋

[rosimybanhao]

I also had seizure for almost 16 years now and I haven't seen a neurologist even once because I have no money to pay for check ups and medications😔 I don't know what kind of seizure is this, but it only attacked on night time just after I fell asleep, which is I am thankful because atleast it wouldn't cause me to harm myself, just like any other person with seizures that just fell suddenly without signs/ warnings. I only remember having one attacked on day time because I fell asleep after I ate my lunch. I know that my seizure will attack at night because I have signs. It would start in the morning after I woke up. I feel uneasy, not able to breath well, fast heart beat, I feel like their is something electricity (or I don't know how to describe that feeling) coming from my right ring finger, and then suddenly running through my vein up to my arm, and then up to my right brain, and then their you go, it's like someone is hammering on my brain really hard, it will last for about a minute or 2, but it wouldn't make me out of consciousness. I just feel uncomfortable and sleepy the whole day, with fear and assurance that it will surely attacked again during the night just after I feel asleep. During the night, I really wanted to cry, to scream😢 begging that I hope it won't attack again😢 I haven't seen myself having a seizure because I don't want to😢 I just feel pity for myself😢 during the seizure, the last thing that I will remember after I fell out of consciousness is that, I want to shout begging for help from someone, but I cannot open my mouth anymore😢 I feel like my body is braided and I cannot breath😭 which is so hard😭 and then after I came back to my consciousness, I was their, not on my mind, wet because of peeing on my pajamas which is really embarassing, my mother are already their crying asking me what are happening to me😢 which makes me even more sad because I don't want her to worry about me😢 it would repeat 1 to 3 times every attack. The last attack that I remembered was when January 2021, and I haven't been experience after that, which I thought that I am already free from that illness, but I was wrong, because after almost nearly 2 years, it attacked me again last night of December 6😢😢😢 I then feel dejavu day after the attack, body and muscle aches, bitten my tounge and no energy at all. I just want to sleep the whole day. I hope you can help me if what kind of seizure is this sir and what triggers why it attacked again, and what to avoid. We don't have epileptic record on our family😢 i was the only one and it made me feel weird and lost😢😢😢

[berylleonard]

I was diagnosed with nocturnal epilepsy 3months ago, I'm 55yrs old . I'm on epillum 200 mg BD. Ihaavent had any major episodes since . But still experience mild to moderate episodes a few times a week . Apparently I've been undiagnosed for 4decades . I remember as a child getting up in the morning and unable to speak coherently. My mother thought I was a bed wetter because on many occasions I would get up with my bed wet .

[XjtBA]

I had my first nocturnal seizure when I was 26. I was put on Dilantin and slowly was weaned off of it after 2 years. I then had another seizure. I was on Dilantin for 20 years and purposely did not have children because Dilantin was known for causing birth defects. Every EEG after my first one showed normal brain function. I was told I had seizure disorders, not epilepsy. I also lived in a very old house with a lot of dust. And I was in a very stressful marriage. I divorced, moved out of state, and slowly weaned myself off of the Dilantin. I am now 69 years old, happily remarried, and haven’t had a seizure in over 30 years. I always wondered if my nocturnal seizures were from the dust in the older home, perhaps from the air ducts not being clean, and the stress from an unhappy marriage.

[oberonsfairydust]

Last Nov. I had my very first seizure in my sleep, and another later that day in the hospital. I ended up spending 3 days in the hospital from spine and lung damage and was placed on anti seizure medicine. I had so many tests done and even saw a neurologist afterwards that was not helpful at all. Things were going pretty well and I figured I was good. I woke up to my apartment completely in shambles on Saturday morning, turns out I had another seizure and was alone, as well. I took myself to the hospital and had a second seizure there.

[JakeMcb]

When i first started having seizures it was always at night. (i have TLE).i only started having seizures in my early 20s (due to tumour on my temporal lobe) snice then ive started having seizures during the day to, 29 now. hopefully ill find the right meds soon. well either that or its the next step. surgery to remove the tumour.

[SacredOwl]

Make a room (a big box, big enough to go inside amd lay down) use foil faced polyisocyanurate or HDPE to make the box. Make sure you have layers of aluminum foil separated by each layer of polyisocyanurate, use half inch polyisocyanurate with foil layers then stack to make at least 2 inches thick. Then add layers of aluminum foil on the outside of the box. (start with 2 or 3, but may need to add more later if continuing to have seizure) The main thing is to have layers. Use aluminum tape for everything, even the hing for the door, just as long as the box is sealed as best you can. Cut in a fan for air, drawing air from a metal duct a few feet (duct on outside is ok). When you feel one coming on, get inside box and it will prevent seizure. If having one, get inside and it will stop immediately.