Chatting about my nocturnal partial seizures | Annie Bean 

I have nocturnals too. I think my brain tries to fight them off because I do the turning thing too. I have had many hallucinations of shape and colors and jellyfish like creatures as I was waking up and now recently waking up with my hands shaking.. But, the feeling of dread or fear or like something isn't right, is the worst. It is hard to describe.

This type of seizure is so rare.. really rare..im glad to know that i am not alone

I so appreciate you and this channel. Thank you or your vulnerability. For Complex Partial Seizures being so common there isn’t much in terms of lifestyle examples, experiences shared, or even support ANYWHERE. Perhaps it’s because everyone is different (hence the complex in the name) So, thank you for sharing your experiences here on RU-vid. I have experienced similar seizures but it’s hard to know much of anything unless someone else sees me experience them. I get very tripped out be cause i “know” something’s gone on, but not remembering (not having proof) makes me feel unsettled. On top of the hazy/ anxiety/ fatigue migraine stuff I feel post seizure.

This video…I have been lost the last few months trying to deal with these symptoms and waiting on a neurology appointment. The is video perfectly describes everything that I’m feeling and experiencing ! Thanks for being so public with your journey.

I feel so weird like im the only one in the world that deals with this...thank u for letting me kno im not alone!!!!

Thank you for sharing your videos. We are going through the process of getting a firm diagnosis and medication management with my 18 month old! We appreciate your experiences because he is going through a lot of the same things.

I have the exact same thing. The weirdest thing is with the memories. Something feels so familiar but for the love of god you can not pin down what it is. It’s part of the partial seizures and happens quite often for me. Thanks for sharing. You are not the only one with this crap. Hang in there.

I feel like people don't understand what it is like to have epilepsy. People don't get what it's like to not have a full night of sleep and to wake up 5 times a night because of this.

Hi Annie! I have felt all of these things & uncertainties! It is so frustrating & I too have felt absolutely crazy going through the cycle of “did I have a seizure or was it just a regular dream?” This actually happened last night. I have complex partial seizures as well & have had several nocturnal seizures. What happens with me is I will literally dream that I’m having a seizure (all of the same things that happen to me when I’m awake & having one will always be happening in my dream - something goes numb, exhaustion kicks in, I go in & out of consciousness, I start weeping, my head hurts). It happens right before I wake up & usually when I wake up I am so exhausted physically that it feels near impossible to fully wake up.

This is so helpful and reassuring. You described what I have suffered from for ten years. I had a seizure last night and it was as you detailed in this video

Thank you for making me feel like I'm not crazy.

good shirt. and ya: the remembrance is so hazy! having one with a vague notion of the trailer shaking, and a sense of falling up: thinking my body tossed itself up out of bed. really strange. getting them around naps too because so tired often.

You are definitely not mad! I have nocturnal tonic clonic seizures and I wake up wondering if I’ve had a seizure to be told that I woke up early in the morning and went to the bathroom. I don’t remember getting up or TALKING TO MY GF. It’s a bizarre feeling and I can’t offer any advice, I can only tell you that you’re not alone. I’m happy to learn that I’m not alone either.

I have Nocturnal Seizures for over 23 years. when i have these is usually just as a fall asleep or 4-5am in the morning. Tiredness is one of the triggers. I never had a seizure in the day or when i am awake.

I have recently joined u guys in having nocturnal seizures at 30. I wake up dizzy, forgetful and sometimes it takes a couple days to feel normal. My muscles get really sore all over my body and I am single so there's no one to intervene if I need help. It sucks

Hey, I found this video because I was trying to find out what are the episodes I keep having at night. I too have some daytime ones, but not like these. You're not alone & judging from the comments, a lot if others feel the same or similar. Thanks for sharing, I'm over a year late, but it is still helpful

*This is video is me off loading a very confusing time. I was confused about what was happening to me during this* However a 24 EEG has confirmed focal seizures that happen at night. Thanks everyone for not making me feel like this isn't a thing.

Wow! Thank you for your videos. I was just DX with simple partials but what you do at night… I do too! I never put 2+2 together until now!

Thank you so much. I don't feel quite so alone now💜 You described my seizures exactly and mine have been ONLY nocturnal🤷‍♀️. It takes a village. Thank you again.

I have complex partial seizures. I also have the deja vu moment prior to the seizure. I have had 3 seizures with severe arm movements and going unconscious. 2 of these seizures were at night. The first one I must have had after my husband left for work, which would have been a few hours before I wake up. I woke later that morning in a lot of pain and greatly confused. The second one I had my husband was able to call for medical help. It lasted well over 5 minutes. When I have these nocturnal seizures I don't realize it at the time. You are not alone. I am so glad I found your videos. Thanks for sharing your story because I thought I was the only one.

Yes! I've experienced this too and it is so frustrating! At least we're not alone alone ❤

Stay away from caffeine and chocolate. I have partial onsets. I start to fall asleep, then suddenly start feeling VERY weird. Like, non-local and dizzy, and I stop breathing. It's not apnea, it's neurological. I then start tensing in my abdomen, and my my pelvic floor muscles start contracting. At this point, I start hallucinating metallic colors, all very deep sea aquatic in nature. I have an extreme anxiety/panic response. My heart races, but is very weak and shallow. This happens every time I start drifting, for hours. Before this began about 9 years ago, I suffered from severe nightmares and sleep paralysis upon waking, every night. Literally, every night. This is horrifying, when it happens. Keeps me awake all night. Chocolate really triggers it.

I just was diagnosed with epilepsy, everything you talked about is what I’ve been going through the last 17 years

My father age,71 (almost) is having such nocturnal seizures since 2016. Its me who is only attendant of him who is nursing him in his postictal state. Dear Annie watching you and listening your worthy experiences is very informative. I shalla pray for you to God that He bless you with complete recovery and a joyful healthy life. Amin

Thanks, my daughter has just started with night time seizures. I feel so useless. The doctors are still diagnosing and I felt a little lost your videos helped with my worries. Nice to have it explained in English.

I was diagnosed as having photosensitive epilepsy when I was 10. I also was a sleepwalker and sleep eater. 5 years ago a friend witnessed me have a seizure while I was asleep and I fell off the bed and broke my back. To my knowledge that was the first sleeping seizure I ever had. For the last 3 years I’ve been waking up with crazy bruises and feeling terrible. Well a week ago I woke up unable to get up and I obviously had broken ribs. I went to the hospital and 3 days later I found out I have nocturnal epilepsy and now I’m completely freaked out. I have a watch thing that monitors for seizures and can call 911 for me. I am wearing a lifevest wearable defibrillator in case my heart stops. Suddenly I’m terrified of epilepsy. I’m 48 I’ve had seizures since I was 10. I was never afraid. I was embarrassed. Also now I think this is why I was a random bed wetter 🤷🏻‍♀️ I have no memory of anything. I saw the video from the hospital and I couldn’t believe it was me. I was walking around and doing the most random stuff. I kept falling down and walking into walls. No wonder I’m bruised up like a battered wife!!!!!!! I think every time I’ve woken up with a wet bed I probably had a seizure. My license has been suspended which who cares, I wasn’t about to be driving a car around anyway but it’s officially medically suspended- I’m afraid to go to sleep. And right now I am nursing 3 broken ribs and a broken left foot. I woke up with broken bones from these seizures 🤷🏻‍♀️ As if I wasn’t odd enough now I know I have this creepy condition . I just can’t emotionally handle my life right now.

What you describe is exactly what happened to me last night. I want sure whether it was a dream or really happened. I partially remember taking my TV remote, turning TV on then off then doing the same thing again. So I'm pretty certain I had one last night and i also woke up with a migraine. Your video helped me not feel like I'm losing my mind.. no pun intended. Thank you

Thanks for sharing this. It’s so difficult to describe. I’m undiagnosed but today I was napping and I felt/remember my arms legs out of control and then woke up fairly well from it but usually I feel like I’ve been drugged at night afterwards and I keep trying to become alert but keep passing out instead.

i got nocturnal seizure in 2012, almost died from chocking from saliva. my dad telling me that i am not breathing for 1,5 hours. he (my dad) is scared and cried that i am died that night. i remembered alot that "realistic unsettling dream" out of body experience. i even draw all of my experience from it.

Thank you so much for being open about your experience with epilepsy. Can I start with saying that I found your 2015 video when I was diagnosed with CPS and it bought me to tears to know that someone else was experiencing what I am. I felt more at ease but also sad that you too have to go through this. I have had complex partial nocturnal seizures in the past but as you say they are really bizarre to pin point. One time I remember feeling really hot and uncomfortable so I kept turning over and over. This built up and I started feeling really strange and scared. In the end I removed myself to the bathroom and that’s when the aura built up and it turned into a seizure. I felt terrible the next day, almost hungover and I felt like I was walking on waves. I totally get what you mean, it’s a really bizarre and scary experience during the day, let alone at night! Have you increased your medication at all?

Totally get you🙏🏼going through the same thing at the moment

Keep doing this! Please! You know the trouble we're going through! You KNOW!

Thank you so much for this. My first neurologist tells me it's all just anxiety despite having massive strokes and grand mal seizures after those along with them showing up on an EEG. I have found a different one but the hang up of the first neurologist who just told me to get my psychiatrist to up my anxiety meds and go away still linger on me.

These are my exact symptoms I completely understand it’s so hard to explain but you did a great job

Hello Annie, It is 2020, yaayy :(, but I just saw your video and feel that I suffered the exact same thing last night. Before I can fall asleep completely, I feel very aggitated and uncomfortable, and yes, I felt your frustration of not being able to articulate it. I did have a problem with seizure in the early 2000's, but haven't had a seizure in almost10 years, now I'm having partials at night. I hope you got the information you were looking for, and thanks for sharing.

So my seizures are only in my sleep i wake up to it and i feel my face twitching heart racing then i cant speak and I'm kinda like paralyzed. I have had them for almost 3 years and i need help it drives me insane.

Thank you I had some same symptoms chronic fatigue migraine starting up extremely tired didn't know what it was im your follower

I have nocturnal seizures and when I'm dreaming and the dream turns weird and haunted all of a sudden for no reason at all, that's when I know it's coming and when it does all I see, feel and hear is pure horror and terror, I thought I was the only one in the family who had it but then I asked my mother about it and realized why I experience nocturnal seizures, I inherited it from her unfortunately.

Glad for mentioning it, I have those partial seizures at night.

I feel like I have dreams of having seizures, and wondering if I had one or just a dream.

Thank you so much, I know exactly what these are, the symptoms your explaining now make sense to me. Was diagnosed in December post road traffic accident, and iv not been right since. So pushed to get this looked into but covid put a hold on it. Can I ask when your in this semi conscious state of sleep I jerk, like jump and I then fully wake up, does this sound familiar to you. Iv been started on lamotrigine which has helped. ? ?

I completely understand what you are saying. I have had Partial Complex seizures for almost 41 years and they are also nocturnal. They are very difficult to describe as I am not fully awake. Recently I have noticed that my anxiety goes through the roof before and after the seizure. I have also realized that I cannot seem to get into the R.E.M state of sleep. Even on medication I have them every night. I have also found out that if I can control my anxiety I can somewhat control whether or not if I have a seizure. If I play calming music like meditation music while I sleep it relaxes me to where I can get the deep R.E.M sleep I need and it can control my anxiety at the same time therefore preventing me from having seizures as I sleep. I hope this bit of information helps you while you sleep. Keep up the good fight!

Monthly cycle triggers these, too. At most, 2 weeks before starting menstruation, and sometimes before ovulation.

I used to have nocturnal seizures before. It was trauma induced cause I had an accident which involved my nose and the stairs. It took about three years after that accident before it manifested. First time it triggered, I had no memory of any discomfort whatsoever. Its like, I closed my eyes, then bam! I opened it again and its morning and there's lots of people asking me if I'm okay and I was just "Wait, I was in my room just a while ago. Why are we on the streets now?". When people around me described what happened, it was not the usual siezures where the patient shakes violently and their eyes roll behind their heads. Mine was that I had a rugged breathing, as if I was gasping for air. Some parts of my body, like my fingernails, eyelids and lips, turns blue possibly from a lack of oxygen. All that while I was asleep. I could only imagine the horror of all those peole especially my parents seeing a 6 year old child in that state. After that first trigger, we tried a lot of tests consulted a bunch of specialist, quacks and licensed alike. Some blamed thhe supernatural, others said it was my heart or my being overweight, and there were even people who blamed my parents for it. But, when someone suggested an EEG (ElectroEncephaloGram), that's where it was all revealed. For a while, I use to sleep and wake up like I haven't slept at all. Apparently, it had something to do with my siezures affecting my REM sleep stage, which made me not have dreams in between sleeps which they said helps relax the body systems while that 7-8 hours of maintenance break is being done inactively. Fortunately, I was diagnosed early so there were some interventions before it could escalate. I used to think those 5 years of medication was just bad case of the flu and that my parents were just overreacting cause like I said, I don't know what's happening to me and it just occurs when I sleep so no one except for my family, the neighbours and my teachers knew about my condition. But, when I researched about it years later, I found out how serious my case was. Based on what I've read, nocturnal siezures can worsen if let untreated and worst case scenario is that the heart muscles can get affected and I could've died from cardiac arrest in my sleep. Thank God, its all behind me know and over a decade later, I haven't had a single episode ever since.

I had one just the other night. I woke up the next day feeling like my head was going to explode and I would throw up at any moment. One thing I remember from my childhood, is that I only had them when I was sick, but I'm not sure if I had them because I was sick, or if I felt sick because I had one.

This has happened to me too , I’m glad I’m not the only one.

Maltese? I lay here tonight with my 14 yr old in my arms . Tears roll from my eyes and blood from my heart . I will hold him as long as it takes. We are home where he feels safe and comfortable, away from the cold rooms and scary feelings . Bless him and 🙏

Hello, my name is Daisy. I have partial-complex. I also I have anxiety, ptsd, insomniac, anxiety about going to sleep (I got severe after mom died), I’ve tried exhausting this to Neuro, been through the EEG and MRI, they said I out grew them or misdiagnosed after 20 yrs, and that it’s psychological. Depression, Anxiety, PTSD, and Bipolar. Anyways, I have these where I actually see myself having seizures but they are grand mal looking ones, choking me, and feel like I am either crying or talking... Or trying to tell someone... almost out of body experience...they are not the same as dreaming or nightmares. Mouth is dry and feel like someone has been choking me. I have learned to move on from anxiety about epilepsy issues in general.

Aye, that "feel odd after" is indescribable indeed.😔. Can also relate to having more 'Nocturnal' Fits/Seizures than Daytime! Like a terrible De-Ja-Vu feeling!! (+ yep, def' know had one) No need to worry about the 'Madness' as it's natural (easier said than done). Normal to be concerned surely, but great vid' anyway/share appreciated.✌...👍 (what with the Med'S aswell + also freaky when go Wandering & not even recalling it) 😞

Hello Annie thanks for sharing your thoughts, just watched this so a bit lat to the show, i too have the same, i can be asleep dreaming and i know what is and what is not part of the dream, i also must have ones that throw me out of bed as i have come round face on the floor with feet still wrapped in blankets and i too have daytime ones, i found it difficult to get doctors to take it seriously and so i have only just been diagnosed via EEG and have been put on Lamictal not very nice but i have been free ish for 5 weeks now, i say free ish because i can still feel it trying to get me. i hope you find something that works for you? all the very best Tim

I’ve been convinced I’ve had several either upon waking up or falling asleep. It happened last night and what you’re describing is exactly how I experience them at night; you wake up very sure SOMETHING happened yet as you say it’s so hazy and I cannot pry my eyes open!! My arms went stiff and my head turned and I keep remembering trying to just open my eyes. I wondered if I had a night terror, but I’ve never had that. Matter of fact I’ve never been officially diagnosed even though I’ve been hospitalized twice for “partial onset seizure” .. and it’s like my bed is trembling until I realize it’s actually me. Then I am quite unaware of where my body is in space and time. Very bizarre. But yes, this is actually how it all started for me. Usually upon waking up. Last night was the first one I can recall happening about an hour after I had fallen asleep. Today I feel sore in my upper body, my left side neck is sore and my eyes hurt. Do feel odd. Ps. Totally unrelated, but I’m a huge Downton Abby fan.. actually my second go around watching all the seasons. I cannot help but notice you do sound uncannily similar to a character called, Anna ( Mrs. Bates ) .. you have a lovely accent and voice! ♥️ 🇺🇸

Hello , I also get night time seizure particularly when I am about to awake every 2-3 months . I feel completely unconscious for 2-3 hours ,for 6-7 hrs head pain but then everything is normal.100 percent normal . Did Ur seizures go away .What did your doctor say?

Hi, I have night time seizure every 3 months or so. I know how you feel trying to describe it but mine seems to be a de ja vue feeling, a funny sensation happens in my stomach and I also swallow quite a bit but the worst thing for me is that for a few days later I feel very edgy, anxious, and a bit removed from reality. When I told my neurologist this he said that this is quite a common occurrence, hope this helps a bit

I used to gouge my skin off, upon waking. A sudden grab, very hard. Would make me bleed. I'd feel like I was hit by a bus, very fatigued, and just felt like total shit. This started 7 years ago, but stopped a few years back.

Mine Happen when I wake up with a headache and I lift my head from my pillow then I end up feeling dizzy and exhausted and sleep deprived and dizzy. Then I end up having a seizure whilst asleep or when I wake up in the morning. My neurologist said I have complex partial siezures in my sleep. I get up to go to the toilet or get a cup of water and I get a headache and feel dizzy and tired and exhausted then I end up on the floor having a complex partial siezure

I’ve tried to explain and never could, you nailed it thank you. I can share this with my husband and family 🙂

My mum has full blown nocturnal seizures and most of the time she doesnt remember she has them unless she has bitten her tongue whilst she is having one...but what i have seen is when my mum gets very irritable or having a very stressed day I can tell that she will have one...I've seen my mum have fits my whole life, well as long as I can remember and it really not nice to see someone you love go through something like this and you cant do anything about it....but my mum says the same as you where she feel like she dreams them and is in two mind whether shes had one or not...but today she actually had one whilst awake which is very very strange as that's happened only once when I was very young and she was hospitalized for a few days to do some test and even the doctors cant tell us why. But as a loved one watching someone go through this I do sympathize with you....your not going crazy x

I have read many comments here - I do not have seizures in the day and unsure what I have are seizures - as when they start ( the shock/ feeling of dread /panic) forces me to do all it takes to get out of it. Always scream "NO" or some swear words and have slammed my hand into a wall to stop falling (ouch!) Comments here such as "falling", "being swallowed by the bed", "terror" "panic" "heart racing" etc, I relate. I remember them all and can get them dozens of times a night (always on that going to sleep or waking up transistion) I do not get paralysed (this i believe is parasomnia or hypnagogia) For myself, I have been told ....after 3 sleep studies, MRI - a dozen doctors, I have PTSD / bipolar/ anxiety / depression. The symptoms I have, fit (not fully) with "Nocturnal panic attacks", "Hypnic Jerks", "Restless Leg Syndrome". Zopiclone helps 80% of the time to get me to sleep but I can't avoid the morning attacks. I have had this for many years. Exhausted during the day.

This same thing happened to me last night, was diagnosed with complex partial seizures years ago and when it happens at night I also wet myself, does this happen to anyone else?

Do you get a uncomfortable feeling as if it feels like the air is stuffy? I believe I have nocturnal partial seizures since I’ve been experiencing situations where if I’m going to sleep or taking a nap, when I wake up right after, the air feels stuffy around me, and I get a bit fidgety. I had a prior history of going into seizures and having them back to back within a given time.

Anyone have seizures at night and you can breathe for a second and the next you cant? It also happened to me when thinking or being in a specific position

I did so many times had nocturnal seizures. I'm a complex partial epileptic person. And yes its hard to pinpoint what's been happening. It's like I'm having tonic clonic fits right after explosive waking up from my slumber. Sometimes I can tell that my whole body convulsing but my wakefulness seems comes and goes without me being able to control it. While having it I feel like I'm having hallucinations while watching me convulsing outside of my own body. Afterwards I know I'm having a night fit when I see I wet my pillow with my drools or wet my bed or all my pillows were thrown all over.

I don't have seizures anymore since 2001 but i been having nocturnal seizures it's a sensation that i can't explain to my doctor i have this feeling in my brain sometimes when I wake up my tongue hurts a lot i think I bit it or sometimes i wake up with a severe headache and all confused

I was on tegrotol for 5 years from aged 8 till 14. I'm fortunate to only had nocturnal epilepsy due to cracking my head when I was 7. I'm now 25 and been off meds and seizure free for 10 years. However I'm a bloke and the side effect I had was It made one of my pecks slightly bigger than the other. I'm happy to be alive but have no self confidence as a result 😑🙏🖖 watching this its good to know I wasn't alone. Coming of tablets my god those mood changes 😬😬🙈

Greetings everybody, How are your health going ? I hope all of you are recovering well from any meditation you are doing for your seizures

I'm only nocturnal epileptic. Doctors hate when I say what it is, because they don't want to sound too assuming. I'm looking into the epilepsy surgery.

Hi Annie, I have had two of what i think are these Nocturnal Seizures, 1 this morning and 1 about a month ago. Both times have been immediately after waking up as im sitting on the side of the bed, both times it kinda feels like im going to fall forwards but im managing not to but my body shakes uncontrollably and it dos'nt feel real. the first time i thought i had dreamt it and i thought i had this morning but my alarm is set for 9.00 and i turned it off at 9.04 so according to that it was happening for 4 minutes, That surly cant be right can it. Ive never experienced it up until now and im not epilectic either.

I get nocturnal seizures only and dont get up immediately.. my whole body really hurts in the morning and its been 2 years i am experiencing it on and off essp when i am sleep deprived and over working myself with studies they disappear when i am not studying... i get so confused about them... i dont know exaclty what's the triggering point..... its exhausting

You’re not going mad! This happened to me too

To validate your experience A neurosurgeon I met with just confirmed to me that it CAN be a thing!! a lot of activity goes on in our brains when we're sleeping, and epilepsy is all about brain activity. I experience EXACTLY what you describe and I more or less have a diagnosis of nocturnal partial complex epilepsy. nothing ever caught on an EEG but I have some structural abnormalities in my temporal lobe. the events are sooo weird and scary. I describe the episodes as violent waves of crippling fear where I'm mostly conscious but also asleep. Sometimes I wake up "half way" in my bed super confused and panicked. Through this journey, has anyone suggested to you that you might be experiencing sleep paralysis, hypnogogia or hypnopompic hallucinations? While I did get an epilepsy diagnosis years ago, I and some other doctors have been suspicious that I am suffering from non-eplieptic night terrors that I just listed. Not sure if that's been the case for you. But since speaking with the surgeon I'm back to believing the episodes are seizures. lmk your thoughts and please be well!!

i don't know if it is a dream or a sezuire that is making me hallucinate because i feel like i am tumbling and floating around my room and my hands are invisible

Mine are when you've just dropped off to sleep or are semi conscious and you get multiple electrical pulses some very quickly after another sometimes just one large electrical pulse! I had all those wires attached to my head a year ago for an hour but I could not get to sleep so the hospital results were inconclusive? Not sure what action to take? This only happens when eyes are closed and I'm semi conscious not eyes open or during the day! Not sure what action to take as I don't know whats going on? They do happen more when I'm stressed but sometimes when I have them in the morning I feel disorientated for hours! If it happens at 2 or 3 in the morning I can't get back to sleep as I'm trying to avoid the pulses which aren't nice!

I have clusters of nocturnal seizures each month usually during a full moon. There is amnesia afterwards and I feel like I got off at the wrong bus stop or something. Mine occur when I transition from REM sleep to consciousness, or shortly after I wake up. Generalized tonic clonic and partial seizures happen in my story. Sometimes I don’t start breathing after it’s done and someone’s got to slap my chest pretty hard, then I’ll starting inhaling again. It’s pretty scary for everyone involved but I have always come through month after month for over 22 years now. I’m obviously still supposed to be here. Yoga, meditation, and cannabis all help very well to reconnect with mind/body and reality again afterwards

Last night I was really tired and had a headache all day (I was really hungover) I went on a walk too so I was really exhausted and went to bed at about 8 o’clock. I woke up at 1 in the morning and couldn’t get back to sleep. At some point I managed to fall back into a deep sleep only to be woken up shaking and convulsing uncontrollably, feeling suffocated and claustrophobic. I often sleep with the covers over my ears and so I was really confused for a few seconds trying to figure out what was going on and scream for help. Of course I couldn’t and was left basically having my body being short of breath as the convulsive shaking continued. I kept thinking “I’m having a seizure and no one can hear me” so I was relatively conscious of the situation but I fell immediately back to sleep only to wake up in the morning, exhausted and confused. I at first assumed it was sleep paralysis and my mind playing tricks but upon research and hearing others stories it seems sleep paralysis leaves you paralysed where as I was shaking uncontrollably and quite extremely. I can remember feeling almost disgusting and horrible at the way my body was shaking, the strangest thing I have ever experienced. Does this sound like a nocturnal seizure?

Do you feel like the bed is shaking and do you sometimes wake up with bruises? I’m just trying to figure out if I’m having them

Right now I'm taking shilajit for my seizures sits natural and so far it works if it doesn't work for you then you could ask your neurologist to have a vagus nerve stimulator device implemented into you. I have the same seizures that you have. God bless

Hi I have epilepsy and have gone in the icu a lot but my bunny has seizures and a lot of his are nocterna l bless him. I hope your doing ok

Thank you I think that’s happening to my boy and ur vid verified my suspicions

I think I just had one last night my head felt like it was firing off so many signals/ electricity I was half sleeping half awake I tried to roll out of bed but it wouldn't let me it just pulled me back in . After I woke up my head was all fuzzy and I feel sick and exhausted. Im really shook up about it.

About a year a ago I had my first nocturnal seizure. I kind of sat up looked at my boyfriend and my boyfriend said it sounded like I said something but mumbled whatever it was. Then started to seize and fell off the bed and continued. Him and his mom tried to wake me up. Ed also almost lost his fingers cuz he put them in my mouth thinking I was going to swallow my tongue. When I woke up I felt so weird. I've since had at least 4-6 more and each time I had stayed asleep after having the 1st seizure I stayed asleep but would end up having a 2nd and then would wake up. I have only gone to the er so far. I need to see a neurologist but haven't been able to make it cuz of Covid and the changes that came with it like needing Id at a new doctor. But hoping to make it there soon. Since I started having them I have had memory loss, lots of Deva, headaches, and muscle pain.

I have nocturnal seizures. I had one today (6-3-2021) for the first time in a year and a half. I believe partial seizures while awake are more like panic attacks. I've had what I thought were auras or partial seizures but they are panic attacks. My sister and uncle has panic attacks. Mine did not start until my nocturnal seizures started. I'm pretture sure that my panic attacks have caused a seizure while im awake, but not every time. The feeling I have afterward is a feeling of desolation, emptyness, destruction, misery....it does goes away. When they first started in 2018, it was really bad. Felt doomed, like my world was ending...not because i was having health problems, but because of the oppressive nature that it puts your mind in. Proverbs 3:24-26 (KJV): 24 When thou liest down, thou shalt not be afraid: Yea, thou shalt lie down, and thy sleep shall be sweet. 25 Be not afraid of sudden fear, Neither of the desolation of the wicked, when it cometh. 26 For the Lord shall be thy confidence, And shall keep thy foot from being taken. Proverbs 3:24-26 (NASB): When you lie down, you will not be afraid; When you lie down, your sleep will be sweet. 25 Do not be afraid of sudden fear Nor of the onslaught of the wicked when it comes; 26 For the Lord will be your confidence And will keep your foot from being caught. Philippians 4:4-9 4 Rejoice in the Lord always; again I will say, rejoice! 5 Let your gentle spirit be known to all men. The Lord is near. 6 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. 8 Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things. 9 The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you.

I’m currently suffering from partial seizures and am being seen for it and every time I’ve had/have one, it’s always at night, most of the time WHILE I’m sleeping! It’s so strange. My fiancé actually records me while it happens, which is helpful. I always swallow and do a lot of lip smacking

I feel so frightened as I am waking up around 4am and can’t sleep for a couple or hour .. but when I go back sleep I wake and if a don’t move I can’t feel my back arching and my muscles tighten .. it has been happening for a couple of years but I keep thinking I’m dreaming but more resent it’s happened when I’m more awake .. I literally feel a very weird feeling in my head and it travels down my body into my back and all the muscles tense up so tight. It only last till a move. I’ve been experiencing such terrible fatigue in the daytime. I am struggling to stay awake after 8pm too. Is this what anyone has experienced? I have also felt complete fear .. it’s hard to explain. I am 56 female with rheumatoid arthritis. I am feeling pretty scared tbh and heading to the doctors this wk. The main reason I have been is because i was on tramadol for pain and thought it was maybe that but I’ve been off of that now for a couple of months and it’s just getting worse x please can anyone help xxx

Hi I have been diagnosed with partial seizures mostly bother me when I try to sleep. see my video it is mind blowing to me since I have never had any thing like this before it really messes with your head trying to figure out what it is.

I usually have it only when I’m sleeping in my back. Sleeping on my side I’ve only had it like 5 times but majority of the time I don’t get it sleeping on my side.

I have had "nocturnal" seizures for over 30 years. I generally feel a high level of anxiety beginning about 5 or 6 o'clock in the evening. I think this is because I actually fear going to sleep because I know what is going to happen to me after I finally doze off. My first seizure happens 1 1/2 hours into the night. I assume this has something to do with that particular sleep stage. Next, I generally start to have bizarre dreams and thrash around in the bed. The only word I can use to describe how this makes me feel is...torment. Finally, when I wake up, one of two things happen. Either I have a seizure and will blurt out something like a racial slur or a curse word, or I will lie in bed with the feeling of being "on the edge" of having a seizure, which keeps me frozen in place for 20-30 minutes. I have been placed on almost every medication known to man, to no avail. I am not a candidate for epilepsy surgery, as I found this out in Jan. of 2019. My next hope is deep brain stimulation. If I could find something that would help me sleep even 20% better, the risk would be worth it to me.

I get all the types of seizures. and I would say having woke up to a nocturnal seizure similar to yours it is very frustrating. I liken it to being extremely hungover but all my muscles are sore. And very difficult to recover from

I started having seizures in 2017; last night at dinner my wife tells me she thinks I had another seizure while sitting up...at the dinner table... that has happened 1 other time, last year... the 1st seizures I had, was after a long drive home from San Diego to Oakland, I fell asleep at my then girlfriends house, when I awoke she told me...the next one I was sitting on the toilet, fell off and busted my face and eye open and broke the glass shower door. I’m on medicine but it’s apparently not working :/ I feel like there is a message I’m supposed to be receiving or something obviously I need to search and found out for myself. Thanks for sharing your experience. These things are freaky cause I don’t want to put my wife in a f’d up position but cool cause my body is doing something it wants to.

I did wake up or the seizure woke me up one night. It is scary and being half asleep because the confusion is worse. Most of mine are daytime ones. I hate the feeling of “oh no, not again” and that I’m fading away. I am on 400 mg x2 daily and rarely have one now. You are NOT mad😉

Ive only realized this happens to me. Exactly what you described but I wake between 20mins-1hour. Its something that scares me but only cause Im new to having seizures. I have a few other types of complex partial seizures.

Yeah I have them too mine are frontal lobe and start as partial affecting my right side usually but then progress into generalised tonic clonic. It's fairly hard as yeah I have them in clusters when they do happen and have a massive headache and have difficulty speaking afterwards but I can understand what people are saying to me it's weird when I come around. This year I was induced into a coma after refusing to take the meds as in the UK they said they were psychogenic but back home and in Italy said its frontal lobe epilepsy and all to say its been a journey and particularly frontal lobe seizures can be mistaken for psychogenic ones and that has costed my life in multiple occasions and I been mistreated and neglected because of that which even if it was that then they shouldn't be acting like that. I have some terrible memories coming round and I experienced seizures since I was 1 and a half years old first febrile which according to my family happened at least 2x and then more subtle ones since i was 5 or 6 years old but at the time they didn't know those were seizures then I came to the UK at 12 years old and believe at 14 I started having full blown tonic clonic ones, that now I know start partially after spending months in the neurology ward and intensive care in the hospital . My story is long so I won't bother you with details but it's it's hard and had to go to rehab because I had so many and being in a coma that it messed up with my brain and body and I had to regain muscle that I'd lost but yeah seizures suck but I'm comforted knowing and I know this but you always think it's you and you only experiencing that so thanks for sharing, I and many others I'm sure appreciate it.

Hi new here and just now being worked up for seizures after a second ER visit. I’m wondering if you have any extreme fatigue or sleepy ness that comes on suddenly before you have these nocturnal episodes or if you just have the eye pain and headaches before or can you even really tell your going to have this? Thank you for sharing your experience it’s nice to have someone who understands what this is like💕

I cannot tell if I have been having nocturnal seizures. But sometimes my brothers have walked into my room at night and twice now have told me I startle in my bed. And have my arms and hands up in the air and they're shaking. And I am making panicked like noises and it looks like I'm looking around the room and crying out in fear at something. And I don't remember this. It's been twice now since this has happened and it's been early in the morning First time is happened it was at 1 am This time it was almost 5 am. My brother this time around said he tried to talk to me and that I was responding in things like moans and noises. He said that I responded with a uuuuhhhhh or something like that. But idk if it was an actual response. Maybe I was coming around from a seizure idk. What does an after nocturnal seizure feel like?

Had one a few nights ago. Started with a strange aura of someone in the room on the bed and an unsettling feeling, then paralysis neck down. Could not turn or move my body no matter how much I tied to will myself. Then 3-4 quick head jerks , flash of light and over! Whole thing lasted maybe 3 min. give or take. 🤷‍♀️

We do have partial seizures in our sleep! I have frontal lobe epilepsy and I have them in the day and in my sleep. I wake up sweaty af and confused and shaky so yes we do have them in our sleep

This is so relatable from last 5 months i am having similar symptoms i wake up at night jittery and shaking and from time to time have nightmares that i do not are really nightmares or not but when i wake up from them its a strange feeling like fighting to wake up and my legs and hands are stretched have gone to multiple doctors all say its anxiety but I dont know what is wrong

My girlfriend has numerous nocturnal seizures like this. It always freaks me out because I’m never sure what triggered it or what we can do to prevent them. I usually just end up holding her until it’s over (they’re never longer than 30 seconds), and most of them she’s not even aware that they’ve happened. She gets the auras that one is coming, and then has multiples throughout that same night. It makes both of us become fearful of falling asleep while she “feels funny”, and this feeling can last for days, but being sleep deprived increases the likelihood that one will happen. Does anyone have any tips or understanding as to why this happens and how to prevent them?

Ok, I stumbled across this video because I was trying to find answers to whether a dream seizure or dream fainting is actually happening to the body. I'll try and explain. I first noticed this 14 years a go at uni. I got freshers flu and so slept during the day. I had been cold so bundled myself up in my duvet and then overheated. But I couldn't wake up. I knew I needed to wake up, and I would for a few seconds and then I would go straight back into my dream where I would pass out or have a seizure. I just thought I was ill and having lucid dreams. But this has happened on and off over the years. Usually day time sleeping when I'm ill, tired or stressed, when I get too hot whilst asleep. I've only fainted once in my life and as I was going I remember saying to myself 'yep this is fainting' because I had experienced it in my dreams. Today I came home from work. Stressed, not having slept much last night and feeling like I wanted to puke my guts up. I slept 16.30-18.50. I set my alarm for 18.15 and I set several alarms 5 mins apart as I find it hard to wake. Everytime my alarm went off, I woke to turn it off and fell straight back into the dream where I would be fainting, but could feel it coming and so put myself on the floor, or whilst I was on the floor feeling ill I would start twitching slightly like a seizure. (This is all in my dream btw). Is it a dream or is it happening? Does anyone know? I've never had a fit, my brother is epileptic, full tonic clonic which started when he was 12. I do experience dissociation, which I put down to trauma rather than absences. Sorry for the long comment- just interested to know if others here experience anything like what I've described.

My husband has a nocturnal seizure about once every few months usually early hours of the morning he has a full blown seizure which is really scary I panic everytime as it seems to go on a long time when it's over hes very confused then sleeps for hours for about a week after hes irritable and said he feels out of it he hasn't been diagnosed as epileptic as they happen when hes asleep ive been thinking of buying a nightwatch alarm has anyone tried these kind of things or maybe any tips of how to help prevent the seizure thnx x

Hi,I have the same as you,my nocturnal ones would wake me up and I would be breathless and have a feeling of strangulation which would end up with my arms feeling heavy,the last one I had I was almost sick retching very frightening. Am on meds now and i have not had any more