Chatting about my nocturnal partial seizures | Annie Bean

Update Since seen my neurologist and it was confirmed these are nocturnal complex partial seizures. Had my last one the other week and it involved swallowing a lot too. You are not alone if you get this too!!!
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[@springnicole]

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.

[@eth3rthre4t]

The same thing happens, my body starts tensing uncontrollable

[@johnreypelenio2237]

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

[@ginamoses6139]

Me too I just had these exact seizures last night

[@johnreypelenio2237]

@@theMaraudersrock what do you think the best solution for this kind of seizure?

[@helldronez]

@@ginamoses6139 i got it on 2012, but on 2020 i waking up bruised and my tounge bitten, well it happen again. but i havent got it from 2013 to 2019, this thing is weird asf. doctor telling me that i am having TLE DVA, weird blood vein growth in my brain.

[@colins7771]

its not that rare lol. not at all. A lot of people have nocturnal partials.

[@pranxhu]

I'm with you guys too.I had one too .

[@frankieerrington]

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 KZbin. 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.

[@ladylyrical5042]

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!!!!

[@dissectcorpse6297]

I just recently started having them I absolutely hate it! And no you're not alone. 👍🏽

[@mcmurtriejames]

You are defiantly not alone! 10 years of it for me. And just started having them again after being almost 8 months seizure free.

[@abigailnelson2846]

Your definitely not alone, I’m scared of SUDEP😳😔

[@nathjohn3158]

Been having them now for 4 years, strangely always when I sleep on my right side, sometimes I get them multiple times a week, sometimes not for months, never had any form of seizure outside sleep but my eyes roll back while open and I feel like I'm being held down by my wrists and ankles and while shaking, usually lasts for 10 to 30 seconds......would love to know why it's always on my right side if anyone has any info.

[@beccacurrie9]

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.

[@christianrossmann1904]

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.

[@patriklundberg757]

Reading this/your comment is such a relief.. I feel so much better knowing i’m not alone…

[@madisynmetaxas7726]

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.

[@jasonbrown5068]

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.

[@oliviadababy5840]

Same thing recently started happening to me

[@funchanel1792]

I suffer from exact same thing but Im being tested and having scans and seeing a neurologist but even the neurologist don't really fully understand but Im trying hard to get some help

[@starliadormeus909]

@@funchanel1792same I’ve been dying for help. I do not want this to effect me later in my life.

[@paulrotich7042]

What medication are you using?

[@billandersonworceste]

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.

[@kaylacarpenter272]

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.

[@MelloFella05]

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

[@MindyParker]

I’m so sorry. How did you find out you were having them

[@furqaniqbal7223]

If you experience partial seizures or in your case nocturnal seizure what you should do is drink a cold drink , like a smoothie or a frappe drink and ofcourse cold water when you have seizures. This will cool your brain and surely will make your muscles better. Eat meals like Fish and greenery vegetables. A good advice is watch a comedy program which will just take your stress away. ( who's line is it anyway ) that's a great show. Always keep a cold water bottle with you when you go for a drive, or a walk. Good luck

[@jonnylong1564]

I have the exactly same thing mate at 40, I empathize with your situation.. it’s not easy

[@guxccifruitsnx]

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

[@elcrispino5689]

Did you take any medication ma'am?coz my son had a nocturnal too and hes taking anti epilepsy but its not working good...if do you have any suggestions it much appreciated thank you and god bless America...im from Philippines

[@furqaniqbal7223]

@@elcrispino5689 Yes sure, there is a medicine called lamotrigine or lamictal. This medicine works great for seizures. Another important suggestion is to give your son cold water immediately after he has a seizure as this will cool the brain and relax the body. If he has any weakness afterwards, then he should drink a smoothie or frappe ( something ice blended ) as this will cool and relax the brain and body.

[@laurafrisbee8168]

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.

[@furqaniqbal7223]

I have written an important and detailed description of the partial seizures below the video separately. Please read that and see if that is of any help for your seizures difficulties. If you have any questions, please do ask below that message. I hope your health is getting much better now. If you have any partial seizures, please immediately drink cold water afterwards as this will relax your brain and body immediately. One more important advice is, if your body is weak throughout the day, you should drink an ice blended drink. If you choose a frappe, it will relieve the pain of your body. Good luck

[@AnnieBean]

*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.

[@furqaniqbal7223]

Hi Annie, The first step after any types of a seizure is to drink a cold glass of water immediately, this will cool the brain. If you have any body weaknesses, drink a smoothie or a frappe, this will also relax the body. Yes having a seizure during my sleep has happened but you should drink cold water and stay calm. Ignoring and remaining in bed is not a good idea at all. If your sleep has been disturbed from a seizure, make sure your body is relaxed enough to complete your sleep after drinking cold water. It's important not to miss a full day meal. Skipping meals can give a partial seizure especially missing breakfast. Avoid: 1) smoking and smelling cigarettes 2) being around chemical factories 3) being areas of detergent and similar products. These can cause any types of seizure. I hope my advice was helpful. Thank you for making such a great video. Please let me know if this worked for you. Good luck

[@israelizzyyarrashamiaak766]

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.

[@Planclanman3]

At least it was diagnosed and you have a good doctor looking out for you. If you weren't made for this journey, then it wouldn't happen to you.

[@furqaniqbal7223]

If you are facing any sort of seizures, don't ignore it. If someone is around you, make sure you are given a cold glass of water immediately which will cool your brain and will take away the symptoms of the seizures. Moreover, make sure you are in a sitting position are relaxed before completing your sleep If you wake up during a seizure, drink cold water immediately.

[@AhmadAli-gp4ig]

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

[@amborambo2128]

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?

[@PersonalGrowthNow]

Sounds similar to what just happened to me. Scary because it was my first time actually aware. It started and I was hot, could NOT get comfortable got the life of me. Tossed and turned for hours. Then the event happened... the seizure. Probably only lasted 10 or 15 seconds..

[@celesteellis3082]

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.

[@jamesbaxter8699]

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.

[@furqaniqbal7223]

How is your daughter's health now ? Your daughter should put a cold towel on her forehead for about 10 to 15 minutes before bed time. That will surely make a difference. If she has seizures during her sleep, make sure she drinks cold water immediately, this 100% relieves the seizures pain immediately. I hope your daughter gets well.

[@furqaniqbal7223]

How is your daughter's health now. I hope she is recovering from partial seizures with the medication

[@isobel723]

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.

[@furqaniqbal7223]

Yes you are absolutely correct. An advice keep a cold water bottle with you and whenever you get up, drink some cold water. It will relieve the pain immediately. Most probably you will stay asleep and not have to get up in pain again. I have written a detailed guideline under the video chats separately which can be very helpful for you. Please read that message. Good luck.

[@rebeccacancelliere1376]

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

[@helldronez]

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.

[@malazansapper]

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.

[@AtomicNewsTV-USA]

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!

[@kevinshinn2977]

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

[@jordanwallace2570]

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.

[@midasthapa2520]

Hi Birdman, I do also get seizure attract during the sleep only. Its really scary and bad feeling. I afraid to sleep if my wife is not around. Sometime I get symptom before seizure happening. many times I try to call for help but I can't make enough notice. I am taking the medicine ; Natriumvalproaat Sandoz chrono 500 mg tablet since year 2015. In the beginning it did work perfectly , now I seems not working. Of course, I'm still in touch with doctor.

[@isobel723]

Oh my god I am going through the exact same thing. I have nocturnal epilepsy and I only just got diagnosed. At first the doctors though it was panic attacks but it's nice to know that lots of others have to deal with this too.

[@blessednhm]

I think I've been having these as well. I use to have these episodes about 9 or 10 years ago but I was told by my doctor it was an anxiety disorder/panic attack because I was conscious when they happened. Then I had to deal with family members saying it was a demonic attack. This year I've started experiencing the same thing but only as I'm falling asleep or in the middle of sleeping. I started to Google the symptoms I've been having and came upon nocturnal frontal seizures. I never new this was a thing but it fits my symptoms exactly. I definitely need to speak with my doctor about this.

[@kenziee9900]

i am 15, but i experience something very similar. i cant sleep right now because of this actually and it’s 5 am! but, since march 2020 i would seize in my sleep. the odd thing was it was only 5-8 am or so. there have been multiple times where i had a grand mal while sleeping but i thought i was in an ambulance or hospital with my mom crying next to me which was the exact opposite. i also get paralyzed and can’t do anything(obviously) but i am completely conscious only making it 10x worse.

[@jordanwallace2570]

I want to add to this, if any of you that have commented on my comment has these issues make sure your not a diabetic because thats what im doing now

[@kaylacarpenter272]

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.

[@amiloo596]

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.

[@becurious17]

I'm so sorry you had that experience! It drives me MAD when doctors don't trust their patients... When I had my first seizure I didn't have health insurance, so I went to the ER not knowing what else to do. The doctor that saw me dismissed everything I said and was convinced I "just fainted". Refused to do any tests and sent me home. It was a horrible experience that has stayed with me too. 😖

[@furqaniqbal7223]

I hope you 2 are getting well. You should talk to your neurologist about a medication call Lamictal, it's very good to reduce seizures. Some points which you can take care of on your own: 1)Always drink a glass of cold water after your seizure and after your body is stable 2) if you still feel weak then you should drink a frappe or something ice blended, this will relax your body 3) keep yourself away from smoking or anything that affects the brain 4) avoid amusement park rides as this can worsen any types of seizures 5) always keep a cold water bottle with you whether you are out for a walk, drive or anywhere else. Watch comedy programs, this will keep your health better. Eat a fresh fish meal and eat greenery vegetables, this will add benefits to your health Good luck and I hope your health stays well

[@Christy-myplace]

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.

[@furqaniqbal7223]

When you are calm after having a seizure, you should drink cold water immediately as this will cool your brain and body immediately. You should drink a frappe or something ice blended as this will further cool your brain and body Eat fish meals Eat full day meals. Watch a comedy program to reduce stress. Always keep a water bottle with you wherever you go because this is the first liquid which will relieve the pain of a seizure. You should avoid smoking or anything that affects the brain. Avoid amusement park rides as this can worsen seizures. Avoid being around Chemical factories. Good luck and I hope you stay well

[@rachaeltorr9650]

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

[@GojiraNoKyokai]

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.

[@paulh6959]

GojiraNoKyokai this happened to me last night. I have experienced it many times but never quite as dramatic as the one I had in my sleep last night. I dreamt I was in a car crash and felt my brain hit the front of my skull. It was awful, it seems to get worse each time it happens but my body almost resists the seizure by making me jerk dramatically and then I come out of it wide awake. It seems this is quite common? I was only diagnosed 1.5 years ago. Any advice would be appreciated. Thank you

[@RP2134]

I have the same thing happen to me. I am just NOW putting 2 and 2 together. For the past year I would have this sudden content/emotion in my dreams that is like an overwhelming doom and gloom/depression/anxiety that I am trying to escape. The dreams are SUPER vivid and lucid. Couple weeks ago, finally caught the tail end of a seizure and what precipitated it was that exact same feeling while dreaming.

[@Planclanman3]

@Angela Marie The good news is, you should be able to get a clear diagnosis especially after the casino. The tricky part is, stress and anxiety will cause more health problems than the seizure if you continue to let them eat away at you. I would recommend getting diagnosed by a neurologist. In the meantime, take it easy, do yoga, meditate, don't drink or take any medications that make it worse. Clean up your diet and be thankful you're still here 👏🏻

[@keno-o1484]

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.

[@leitaylor4152]

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. ? ?

[@thecoltraneteam1834]

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.

[@robynfarquharson611]

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

[@michellekirkendall5153]

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!

[@kayliapalmer5866]

This is me too!! Thankyou

[@saridewi1187]

Same with my son have to go through nocturnal seizures every night or when his sleep....on med and try many thing to find cure from illness but look no hope...any suggestions?tq

[@furqaniqbal7223]

@@saridewi1187 What has the doctor advised ? There are a couple of things which can help your son. He should: 1) eat a full day meal on time (breakfast, lunch and dinner) 2) Get proper sleep 3) drink cold water immediately after having a seizure 4) drink a smoothie or frappe if he is still unwell 5) eat meals like Fish 6) watch a comedy program to reduce stress He should avoid: 1) amusement park rides as this can worsen seizures 2) being around Chemical factories or any strong smell like detergents 3) missing medication 4) over stressing Talk to his doctor about a medication called Lamictal or lamotrigine as this medication is more effective for epilepsy people.

[@kelligillies]

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.

[@fredz61]

One word. YEP . I try to tell people same thing so hard yet if you have them you nailed it.

[@astrokiji6872]

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

[@sambarrett3835]

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

[@anshulkedia8802]

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?

[@0zimale]

The dejvu feelings are horrible. Stress and seizures are linked in many cases.

[@anshulkedia8802]

@@0zimale so , now you are ok on medication ? Which medicines has your doctor prescribed?.

[@0zimale]

@@anshulkedia8802 no meds at the moment, this is all new. What are your symptoms....

[@anshulkedia8802]

@@0zimale total unconscious when one happens . Afterwards muscle pain ,confusion etc. Had been on medication since 3 years no benefit .occurs one in every around 2-3 month

[@anshulkedia8802]

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?

[@davidturner7080]

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

[@Sevynheigh]

Same. Me today. Grand mal one for me. Very scary. Would love to know if it was legit or not. My heart was elevated when I woke up. And I have a headache as well and my body’s a bit sore and I just feel off

[@shreyabajaj]

Same its so samee

[@shreyabajaj]

Like i had seizures twice or thrice today in dreams idk if its real bc in my dream i was trying to get up next thing i know i was wigh mom and reached but idk when i actually woke up i was on my bed

[@be2full2bnatl]

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

[@kaylacarpenter272]

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

[@justjulia8007]

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! ♥️ 🇺🇸

[@walterwhite1]

Honestly sounds more like a demonic possession than anything

[@justjulia8007]

@@walterwhite1 so weird, it actually was. You must have the same spiritual connection to know such a thing!! I’m truly amazed. Thank you 🙏

[@estianjansenvanvuuren9904]

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

[@jeanyluv5106]

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?

[@aliyork3495]

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

[@Swartz2478]

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.

[@furqaniqbal7223]

You can do a couple of things. After having a seizure and having control of your body, stay as calm as you can and drink cold water as this will cool your brain and body immediately. If you are still unwell throughout the day you should drink a frappe or something ice blended as this will further relax your body. Get proper sleep and eat your full day meals. Watch a comedy program to reduce stress. Eat fish meals. Always keep a cold water bottle with you wherever you go because this is the first liquid which will relieve your seizure. Avoid: Smoking or anything that affects the brain and body. Amusement park rides as this can worsen seizures. Being around Chemical factories. Good luck and I hope you stay well.

[@dillonsomerville4729]

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.

[@RATLEEA10]

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

[@christinetebedo8352]

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

[@mood8340]

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?

[@isabellacaccia151]

Hi, there are many reasons this could have happened including the seizures, but normally if you have a seizure that involves shaking (tonic clonic seizures) you will not remember it. Obviously I recommend talking to your doctor about it and they might recommend and EEG to test for seizure if they see fit. Hope you get answers

[@chrissallaz7034]

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

[@kshitijjaiswal234]

Exactly same is the case with i am also getting nocturnal seizures each month from past 1 year when I am about to wake from sleep. It's such a horrible experience sometimes i fear to go to sleep.

[@sin2695]

My husband has been the same since 2016, he has been in icu three times with cluster grand mal seziures which he has 90% nocturnal but he has had EMDR and also on cannabis oil from sapphire clinic, it has made a massive difference to his life he doesn’t get half of the auras now but he has cut dairy out too, we know the oil is working but it’s annoying still not exactly knowing where they are come from, I have brought him out of some with distraction but when he’s already asleep it’s hard too❤️

[@chrissallaz7034]

@@kshitijjaiswal234 be happy they occur while resting. The last thing you want is having a seizure while driving or in a small room where you could fall and hit your head. Bed is the safest spot to have a seizure!!

[@butzee]

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!

[@bobidderis3880]

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.

[@steveholloway8576]

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 🙏

[@SnackAttack6]

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

[@garypreece7299]

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.

[@o_deabanana4355]

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!!

[@o_deabanana4355]

Also do you have a neurologist? Try finding the best one you can in your area or in nearby cities because you shouldn't be alone in trying to figure this out and there are people out there who really understand the complexities of the brain !!

[@Planclanman3]

If you've been diagnosed with epilepsy and the events happen while you're asleep it's like epilepsy. Have you ever had night terrors or sleep paralysis as a child? Do you recall not being able to move when you woke up and struggling ? That should be it, and within 10-30 seconds you should be able to wake up. It's a bit scary but it shouldn't ruin your whole day or make you feel exhausted. If it does. You likely had a seizure, not a bad nightmare.

[@badassdrumer81]

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

[@cosmicjourney4555]

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

[@emc2441]

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

[@soumiamoujane3695]

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

[@ineedsleep4071]

I had my first seizure yesterday... I started seeing a phrase when I closed my eyes, suddenly my attention was grabbed by a specific word in the phrase, the more I look at it the more tremor I get. Afterwards, I woke up normally and thought that I was imagining things so I tried it out n closed my eyes again, n ye I saw the same phrase then tremors began again. this time that same word that triggered the tremor zoomed in slowly. as it got closer my tremors got more intense and it even climed up my shoulders. I couldn't open my eyes anymore and my arms are pretty much paralyzed/out of control, and It also feels like I'm being swallowed by my bed too. then after like 10 seconds I was able to open my eyes again, and I was out of breath cause it's all so strange to me and I'm scared cause I may have an underlying issue yada yada. (personally, I think the cause of this is stress and sleeplessness, since I've been staying up late for weeks now. by late I meant I'm still awake at 9-10 am in the morning, which is very unhealthy but I had t do it to finish my assignments so YEEEET) p.s. sorry for this long ass comment and I hope everything goes well for ya'll in the nearest future. Thanks for letting us know that a handful of people experience this too, Annie :> ur not alone in this

[@Philanthropyuae]

May I know if this is self diagnosis? Because I understood what you mean by the bed swallowing and I have been diagnosed with partial epileptic discharges. Thanks

[@furqaniqbal7223]

Your story is long but better to write what you're going through. Reading your comment is a partial seizure but you shouldn't ignore this. When you are feeling a sort of cramp or shaking body, try to relax ( yes it's difficult ) and drink cold water immediately to relax your brain and body. Don't miss your meals and if you are feeling weak throughout the full day, drink a smoothie or a frappe to cool your mind and body. Eating fish and greenery vegetables is very beneficial for your body especially for epilepsy people. Good luck and feel free to ask any questions

[@danielferguson1278]

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.

[@nishanlama3817]

same here 😓

[@justjulia8007]

I can actually see the flashes almost like strobe effect behind my closed eyes.. it was particularly bad last night and then an hour later I had what I call a partial seizure- never been fully diagnosed thanks to Covid and Drs not seeing anyone .. I’ve had several upon waking but never at night. Lucky me lol

[@danielferguson1278]

@@justjulia8007 havent got diagnosed either I've only had two of these one year apart each other but this one was just more scary not sure if I I have more while sleeping. The ones that I did have were also when waking

[@alanvillarreal3879]

@@justjulia8007 same here but for me it happens suddenly I see flashes and it feels like I was being electrocuted but then it ends like after an instant

[@furqaniqbal7223]

Yes, these are symptoms of partial seizures. You need to keep a cold water bottle with you and immediately drink the water after having the seizure. If you are feeling weak afterwards, drink a frappe or something ice blended. This will relax your body. Sometimes it's better to choose a fresh fish meal ( not fast food ) and greenery vegetables. There are things you should avoid as well. I have written a detailed message belowin the chats , please read that Good luck

[@epgamer1145]

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.

[@ElCap1van]

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

[@dylansnikecrep]

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

[@Lilibet82]

I’m trying to make sense of what’s going on for me on a night. I have been partially waking up during the night on my back to my arms and hands going rigid raised up in front of my chest. I try to wake myself up fully to see what’s going on with me but with what feels like a couple of seconds of this happening, the next thing I know it’s morning. I don’t have any history of epilepsy, I do have sleep issues due to PTSD and have nightmares but this thing happening with my arms and hands is not an issue I’ve ever experienced when having nightmares etc. The only way I can describe it is like when you go to do a stretch when you’ve just gotten up on a morning except my arms are just raised in front of my chest and I’m not getting up as it’s still middle of night. Part of me worries it’s possible nocturnal epilepsy but another part is saying don’t be stupid, you’re just dreaming it or something. I’d sound crazy trying to explain this to a GP as it really probably is nothing.😞

[@justjulia8007]

It certainly doesn’t sound like nothing.. matter of fact you’re describing what I experienced last night for the first time.. it was absolutely scary, and upon waking I’ve had to rethink was I dreaming?? My arms hurt, my neck was twisted and that hurts ..so do my eyes! I simply can’t attribute all that to a nightmare. It is hard to explain but seems we’ve all found a forum of people like us.

[@furqaniqbal7223]

Please see a neurologist. When you are able to move your arms, just drink water immediately to get your body normal

[@BB-eg2gf]

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.

[@jackiebull2866]

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

[@faithhope8537]

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.

[@justjulia8007]

How lovely of you to share such encouraging scriptures! Thank you for that. ♥️

[@BeyondTheWilds1995]

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?

[@Scott-incognito]

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.

[@rameenfatima5291]

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

[@LittleCutieABDL]

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.

[@furqaniqbal7223]

If it is confirmed that you have epilepsy, then you should take this more seriously to avoid getting worse seizures. You need to drink cold water immediately after having a seizure. If you are still unwell throughout the day, you should drink a frappe or something ice blended as this will further relax your body. Watch comedy programs to reduce your stress. Eat your full day meals. Get proper sleep. Avoid smoking or anything that affects the brain and body. Avoid amusement park rides as this can worsen seizures. Avoid being around Chemical factories. Ask your doctor for a medicine called lamotrigine or Lamictal as this medication is more effective for epilepsy. Good luck and I hope you stay well

[@nutbush67]

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

[@tarianacox1649]

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?

[@furqaniqbal7223]

What has the doctor said ? What medication is she taking ? Lamictal is a great medicine. If she has a seizure then give her a glass of water immediately as this will cool her body and relieve the pain of the seizure. Don't wait for her seizure to end. Watch some comedy programs. Keep her away from amusement park rides as this is a disadvantage for a seizure. She shouldn't consume anything that will affect the brain. Do let me know how everything is going

[@mountainstatematt]

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.

[@Baxfam1]

Try marijuana for sleep like a baby. You're welcome.

[@jasminemorgenstern6599]

@@Baxfam1 how does it affect epilepsy and the nocturnal seizures. Is it possible for you to give any information?

[@theresacorella2721]

Hello I only get nocturnal seizures I’ve had them since I was about 18 and they have changed over the years when they first started I’d hear a high pitched sound ringing in my ears and see blk n white checkered flashes it felt like my brain was awake but my body wasn’t like sleep paralysis being away but u can’t do anything about it and sometimes I could wake myself out of it and other times I’d keep passing out and going right back into another seizure then they changed to more of a dream like sensation but I knew I was having a seizure because I could feel my body literally jerking around and my dreams would be of me blasting to the top of a mountain and then back down again really fast it’s a very crazy thing to explain and I always feel tired the next day I don’t get them as frequently as I use to sometimes I can go years w out on but when I do finally get one it can be pretty bad ..I just wanted to share my experience

[@7arimas]

You literally described exactly what’s been happening to me this past year. They haven’t been consistent. They’ve started in January of this year and I haven’t had one since March but the first time it happened I did see flashing lights. I didn’t know if it was sleep paralysis or seizures. It’s the same as you described though. I’d pull my self out of the first one by hyperventilating and literally having to rock back an forth, and then I’d fall into another one. These would always happen right before I fell asleep, like when you’re really tired and you just shut your eyes. I had one happen last night and it was way worse than the others. I visualized my mom turning the door knob because I really wanted her to wake me up (kind of like a dream I guess). I was trying to call her but I could hear for myself that my speech was really slurred. I think it was loud enough for the whole house to hear tbh. It happened like 3-5 times last night, last one being the worst. *Sorry I typed all this but I haven’t been able to find someone who explained it as well as you. How did you get diagnosed?* thanks so much for sharing your experience

[@phengabpo5522]

same experience also..any advice? how to lessen..or how to avoid this as much as posssible..

[@luc6533]

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.

[@furqaniqbal7223]

Hi, I've written a partial seizure detailed message. Please see if that answers your questions. Maybe it can answer questions for your brother as well. I hope you stay well

[@50pence73]

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 😬😬🙈

[@torchgoat1707]

I think I’m having night time seizures I thought it was night terrors or something but recently I’ve been more aware of them and it’s def not the same as a nightmare and I feel so off like it starts off subtle I feel off and it’s like electric jolt that goes through my body and head and I’ll violently twitch and I don’t make sense of it when it’s happening then I fall asleep and I remember my jaw violently twitching and my breathing and my body and I snap out of it I don’t know how long it lasts and I feel off and I wake up and usually ignore it and go to sleep but recently I had visuals afterwords which are quite extraordinary so I’ve decided to make a appointment with my doctor it is rare that I have them and when I do it’s usually when I’m really tired or sleep deprived I don’t know what to make of it but i really don’t like it sometimes I’ll be in a dream and aware it’s going on and know it’s not right and somethings wrong it would make sense why my jaw has been swelling up

[@sasha-sv2xv]

Hey had seizure symptoms on Wednesday night ..and I'm still so very sick ..any suggestions...I've never felt so weak after my seizures

[@furqaniqbal7223]

I have a suggestion. If you have a partial seizure, drink cold water immediately, this will cool your brain. If you are still very weak, drink a smoothie or a frappe this will relax your body. I've written a detailed message about partial seizures below the wonderful video. See if that answers your questions Good luck

[@WCarey-nz7lx]

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.

[@nickycotton6137]

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) 😞

[@maggspaine5419]

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

[@mojav3_]

What meds?

[@maggspaine5419]

@@mojav3_ lamotrigine 150 mgs twice a day

[@wakandascottyb903]

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.

[@tracysuiter7527]

I have grandmal seizures. I have since I was 2. Plus i have had nocturnal seizures and complex partial. At age 7 i was playing tag. I remember walking or running and i couldn't stop when my brother was yelling at me. I went to the highway. I was told i layed down and had a seizure. Cars came to a stop. Almost crashing. My mom had to comeget me. As far as night or sleep seizures. I have had many. Most of the time i wake up dried blood in my mouth. I have bit the inside of my cheek . I have blood and saliva on my pillow or throw up on me and my pillow. I most of the time wake up with a headache and stomachache and confused. Nocturnal seizure for me are rough. I try to stay on my side when I sleep. I live on a deadend road now not on a highway any more. Im 52 now with 2 children. But u had a real warning. Your body let you know what happened to you.

[@andreaheide2382]

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

[@christinecadman7856]

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

[@furqaniqbal7223]

If your husband is having any sort of seizures, first thing to do is give him a cold glass of water. This will cool his brain immediately. If he is still feeling unwell , he should drink a fruit smoothie or a frappe which immediately relaxes the body. This shouldn't be ignored

[@Rainbow20022]

Glad I found this

[@shannonmccarty906]

I have something going off in my head it last 16 secs & mostly happen at night feel like I'm going crazy at times ugh

[@Brooke-ey5ow]

OK so ... I have MS that I know. But recently I feel like I'm going crazy and well just is this what it's like?? I was in my room and was suddenly over welmed I'm a fear I've never had be9fre. Now I do have some truma I'm my past from an ex bf and anxiety at times but this was unbridled fear... OK so in my room really uneasy my hands start to well act on their own, I get up rtey to stop it by pressing my hands down on my bed then I'm unable to stay standing every fiber of my body just compapsed on the ground. Still consence my my runs with possible explanations. I'm on the ground kind of wriggling for a good 3 mins in a daze. As soon as I snap out of it pull myself to a sitting position again I fall face first in to my bed frame... the conclusion that has seamed to come to me is ... I'm being attacked by a demon ... I have never had that type of pure terror before... I scream and the top of my lungs running down the hall to my parents clearly shaken they ask what's happening and I can't fully understand myself just that I'm still feeling as tho my body is not my own. .. repeatedly hands in the air with a tingly numbness and being very uncomfortable siting down very jittery holding on to my mom shaking... now this continues for an hour maybe once I feel myself again my head is pouring ears ringing and I vomit multiple times ... all night petrified to fall asleep... that was about a month or so and I had a fear of my room for days... witch brings me to now having difficulty going and staying asleep maybe an hour or two then !lways kinda half asleep wake up with my heart racing and ears ringing again.... my god OK there it was was this what you initially felt I don't know who to go to with this thanks

[@angiieruiz2743]

Hi!!! I think I have one answer from your question! I only have seizures when I’m asleep or half asleep. I never had a seizure before and I do not get them during the day. Sometimes I wake up with a very bad headache not sure what I have I’m 23 years old and it scares me because I can’t breathe and I shake uncontrollably and I swallow too! One time I fell off the bed and I started to seizure and I was crying and screaming at the same time after that I went back to sleep… ( I know this because my boyfriend sleeps with me) he told me everything

[@furqaniqbal7223]

How is your health now ? After you have a seizure, drink cold water immediately as this will cool your brain and body immediately. If you are still unwell throughout the day, you should drink a frappe or something ice blended as this will cool your brain and body Eat your full day meals Take proper sleep Watch a comedy program to reduce stress Avoid: Smoking or anything that affects the brain and body Amusement park rides as this can worsen seizures Being around Chemical factories Ask your doctor for a medicine called lamotrigine or Lamictal as this medication is more effective to reduce seizures. Good luck and I hope you stay well

[@aalulaa2549]

I can finally put the words on what has been happening to me since I was a kid. I used to do sleep apnoea and then this evolved into these nocturnal seizures. Usually I am partly conscious and having a bad dream when this happens and I can feel my body moving and having a resistance pushed against and I can also feel that I am opening my mouth very wide as if I wanted to scream usually I do wake up with a very strange feeling and for the next hours or days I am very tired I have no muscle strength at all and I’m feeling very lightheaded and I need to take long long naps yesterday I had to take my day off from work and I slept until 9 pm.

[@jayrees3864]

I only suffer from nocturnal seizures, never had one in the day.. I have had one every sort of 3 months recently and I wake up with a absolutely butchered tongue.. I am not aware of anything that happens during this time or anything for the next sort of 20 minutes.. The next day it's just a weird feeling to get your head around.. Does anyone know if they stop you driving if your having nocturnal seizures?

[@midasthapa2520]

In Netherlands, if your seizure only happens during the sleep then you can still have driving licence, my doctor told.

[@xlindybae2820]

This just happened to me on the 9th and they told me I can't drive I go to a neurologist on the 30th

[@baruthfamily1713]

@@xlindybae2820 yes in canada license is revoked

[@tennentslagerman8910]

What was the official diagnostic title you were told when you seen the neurologist I.e temporal lobe epilepsy? Also did you receive an mri and did this show any sclerosis? Would you say/have you been told that you have experienced a degree of drug resistance, and have you/are you able to apply for a diving licence again?

[@AnnieBean]

Temporal lobe epilepsy in the form of complex partial seizures. I have MRI scans but the EEG picked up epilepsy. Not been told anything in regards to medications, I have moved from one to another and varied dosage. I don't drive anymore.

[@thecoltraneteam1834]

Also my fiancé and I both are epileptics, drug resistant, he has a VNS and Seizure Response Service Dog.

[@denzelw.8713]

hi everyone, i’m not diagnosed with epilepsy or any condition really but i think i experienced a nocturnal seizure just through what i’ve researched and the way you’ve described it. like you said, i know what a nightmare feels like and this was not one. it’s been a couple hours since and i haven’t been able to go back to sleep (too scared it will happen again). any advice?

[@angiieruiz2743]

Hi I feel the same way as you do. I can’t sleep normal because I’m scared it will happen again. I have trouble sleeping now.. so far I had two seizures and I remember the second one that I kept shaking and then it went blank and when I woke up my boyfriend told me everything and I was so confused.

[@furqaniqbal7223]

After having a seizure, you should drink water as this will cool your brain and body immediately. If you are still unwell throughout the day, you should drink a frappe or something ice blended as this will further relax your body. You should watch a comedy program to reduce stress. Get proper sleep and eat your full day meals Eat fish meals. Always take your medicine 12 hours apart Always keep a cold water bottle with you wherever you go because this is the first liquid which will relieve your seizures. Avoid: Smoking or anything that affects the brain. Amusement park rides as this can worsen seizures. Being around Chemical factories Ask your doctor for a medicine called lamotrigine or Lamictal as this medication is more effective to reduce seizures. Good luck and I hope you stay well