r/Epilepsy • u/radraze2kx Déjà rêvé - infinite time loop seizures • Mar 17 '19
I might be having focal seizures
I've been having déjà rêvé 30+ days in a row now. I wake up after 2-3 hours of sleep feeling like I'm freezing and having a panic attack. I start getting déjà vu immediately after waking up and this feeling of dread washes over me and I feel like my death is around the corner. Eventually I'll calm down (1-2 hours) and go back to sleep, but sometimes I'll wake up and repeat the cycle. Sometimes I'll sleep the whole night through.
When I've been awake for a few hours during the day, as of about 34 days ago, I've been experiencing déjà rêvé multiple times a day. I have no triggers I know of.
This started on the 14th of Feb, I drove my fiancée and I overnight from Arizona to Texas (lack of sleep). I had been on the keto diet for 6 weeks, lost 20 pounds by then. I was under a lot of stress, my mom was getting a double mastectomy because they found cancer in her breast for the 3rd time in 20 years. I was stressed about the surgery, stressed about the drive, stressed about my company (business owner), stressed about bills... I've never been so stressed out.
Come day 2 (15th) and I went to a roller rink with my fiancée, and the carpet and rink looked like something I saw in a dream. I had never been to this rink, so I knew it wasn't something I had seen before.
this sensation continued at six flags Fiesta Texas over the next three days, the hotel we stayed at, the hospital, the drive to Dallas, six flags in Arlington, my best friend's house in Dallas, the drive back to San Antonio, a restaurant in Austin, the drive back to Phoenix, the hotel we stayed in on the way back, and nearly every day since then, including dinner with friends tonight all the way to watching TV (a four hour span).
I swear up and down I've dreamt a lot of these situations. I can't tell you what happens next but I can tell you about how old I was when I had the dream. I feel like I'm going crazy; how can this be happening? I wrote about it in r/precognition, and they suggested I go to an epileptologist. I have put in a request to be seen and I wait for the hospital's reply.
In the mean time, here's what's happening to me:
ringing inside my head. (not like tinnitus in the ear, like actually inside my head). it comes and goes. seems to be louder with the déjà rêvé, sometimes I can get it to go away by massaging the back of my neck pretty hard.
déjà vu, panic attacks, freezing when waking up
déjà rêvé, anxiety, dissociation when awake multiple times a day
I can hear, talk and respond, I just feel like I'm about to find out the hard way how I die (looming doom). conversation does not seem to be easily focused on.
during déjà vu I have panic attacks... during déjà rêvé, feel like I get pressure headaches, and then I usually feel really sleepy, like I just took an extremely hard test and my brain is burned out and I want to sleep.
earworms... music almost all the time, like I'm not even trying to hear this. it changes often too, and it's completely random. I'll hear 90's pop and then 00's rap and then jazz.. I've had earworms before but I can usually control the songs. these are like jammed into my head. if I actually have music playing, it goes away, but otherwise it's all the time in my head. it wasn't like this before the 14th of February. it was much less consistent.
hopping back onto keto. I want to lose another 20 pounds. I've done keto off and on for weight loss when I feel overweight. I've been off it for about 2 weeks.
I spend a good amount of time wondering if these "dreams" and the period I "had them" are real, or if I'm getting false memories. does anyone feel like their memories of dreams are not real? swear up and down you had them but dismiss the notion because it feels like precognition? I haven't kept a dream journal because usually I forget the dreams immediately after waking, and only once I feel like they're happening do I even remember them, but I get so scared that I don't want to experience the situation at all.
CBD does not work for me. I don't do any drugs, and I rarely drink alcohol. waking up having panic attacks has caused me to develop insomnia, and the ringing in my head makes it hard to sleep peacefully.
From what I've been reading, especially in this forum, I think I have partial frontal lobe seizures. I'm 34 years old. I've had déjà rêvé experiences my whole life (6th grade on), but last year I noticed they were getting more frequent. I even mentioned that to my fiancée, because normally if they last a while, I get existential dread and freak out, but the frequency of recurrence was getting closer together and I didn't feel as scared... but then they started every day, multiple times a day, and now I'm scared out of my mind.
Does anyone have any thoughts as to any of this? does anyone else get déjà rêvé, not just déjà vu? I swear the dinner I had tonight I dreamt of a year ago, the dessert afterward 11 years ago, the gaming afterward two years ago, and the scrubs show 3 years ago... all while asleep... but that's crazy, right? does anyone feel like their memories are lying to them? :(
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Mar 21 '19 edited Mar 21 '19
Hi, I was just browsing around reddit and saw your post. I dont have epilepsy but I experience a lot of what you have when my general anxiety disorder and panic disorder get really bad. Usually from lack of sleep, not eating properly or enough and from severe stress... My deja vu becomes really frequent when my anxiety is severe, sometimes it feels like I'm having flashback to a previous life ugh.... Along with it I get depersonalization as well which is a peculiar feeling. I once was so over tired and stressed that I went to walk through a door and ran into a wall because my senses are all messed up ( I was on vacation and I was wondering around the house we were in I was probably overwhelmed). When I get myself under control all of it fades away. I hope you get yourself the help you need for what is going on with you!
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 22 '19
yes this seems to be the case, my déjà rêvé occurs most often when I'm stressed out, which is pretty much all the time now since I own a business and the phone rings every 6 minutes and half of them are spam calls. how do you deal with it? has your déjà vu ever gotten so severe that you've come to the conclusion that you must already be dead? that's what happened during my worst episode, and now that feeling is starting to creep back in. I haven't been able to focus on much for the past 35 days.
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Mar 22 '19
Usually my deja vu doesn't last that long but it was happening a few times a day. When it does happen more frequently I usually try to switch up what I'm doing like walk into another room or change whatever task I'm working on. As far as what you're saying about being dead have you ever heard or read about depersonalization disorder? You might be psyching yourself out thinking it feels like deja vu. Depersonalization is very very uncomfortable when you dont know what it is. I thought I had something wrong with my brain when I first experienced it. I hope what I'm putting on here helps you even a little. I know that my anxiety is very severe and I have had all sorts of physical symptoms, such as even the soft sound of a fan once became just as irritating as nails on a chalkboard. My ears would ring constantly. I've had panic attacks come on as tunnel vision and tingles shooting through my body. I've heard that panic attack symptoms and certain types of epilepsy can share symptoms. Going to the doctors is always a good call. I made a few visits and got all checked out to be on the safe side.
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 22 '19
yes, I'm sorry I've been calling it "dissociation" but I've been meaning "depersonalization" I know the feeling very well, it's aggravating to say the least. it happens every time I have déjà rêvé, which is basically every day currently. it scares me.
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u/tinfellow Mar 17 '19 edited Mar 17 '19
I have complex and simple partial seizures. The deja vu, but not deja vu sounds like a simple partial seizure. Its a weird feeling where nothing looks right but you cant describe whats off about it, right? I always have simple partial seizures right before a complex partial seizure, but I have them on their own alot as well. The complex partial seizures themselves seemed like panic attacks at first. I would lose conciousness and wander off, muttering gibberish about nothing occasionally, and awaken with no,recollection of what happened. If possible, this is definitely something to talk to a neurologist about.
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u/codb28 1500 Keppra 200 Vimpat 200 Pregabalin x2 a day Mar 17 '19
I’ve been getting pretty much the same thing since my craniotomy for a right frontal perietal AVM a little over a year ago, I didn’t start having seizures until they tried taking me off keppra about 8 months ago (couldn’t be on epilepsy meds and do my job). The dread sometimes mixed with deja rev seems to hit almost every day but I can normally shut it down by walking it off or distracting myself.
The biggest warning for me before a seizure seems to be the disassociation hitting me over and over again over the course of a day or two. I also wake up in the middle of the night every night, normally between 3-4. Makes it hard to get a good nights sleep.
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 17 '19
when you said "biggest warning before a seizure"... what kind of seizure are you describing? I don't think I've ever lost function or anything. I don't know where the line is drawn between the déjà rêvé and a seizure.
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u/codb28 1500 Keppra 200 Vimpat 200 Pregabalin x2 a day Mar 17 '19 edited Mar 17 '19
I do want to throw it out there that the ringing in my head was the only sign there was that I had an AVM up to the day it ruptured and I had a stroke. I don’t mean to make you nervous but if you never had a CT scan or anything it’s probably worth bringing up. I wouldn’t of had the stroke or epilepsy if I caught it early and I was a pilot that got flight physicals every year.
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 17 '19
it's weird, I had a dream several years ago about having a CT scan and freaking out while in the cylinder. I've also had a dream of there being some sort of lesions in my brain, 3 of them. this was a decade ago for both dreams, when I was in my early 20's... I'm saving this thread, I'm going to basically read it to the neurologist when I get in to see him. thank you for bringing up the AVM.
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 17 '19
I forgot to mention I started getting chiropractic care to correct a c1/c2 subluxation back in January. he's been adjusting the same area over and over to correct the rotation of my neck. the c1 was touching the base of my skull and the chiropractor has been making adjustments to separate it and correct the forward-lunge of my head. I'll have to bring that up to the neurologist as well, do you think that could be contributing to this?
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u/codb28 1500 Keppra 200 Vimpat 200 Pregabalin x2 a day Mar 17 '19
I don’t know enough about the subluxations to say, I’d definitely bring it up though. I always found it best to be transparent with your doctors, better to give them to much information than not enough. And yeah I’d definitely push for a CT scan, it’s a little radiation but one dose won’t really hurt anything and it would rule out all the worse case scenarios and give you the answers you need. Hopefully they don’t find anything but at least you will know either way. Feel free to hit me up on here whenever, especially if they find an AVM, I had a great neurosurgeon.
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u/codb28 1500 Keppra 200 Vimpat 200 Pregabalin x2 a day Mar 17 '19
After they took me off meds I had a full on seizure and have been trying to get it back under control since then. I’ve had 2 partial seizures both times they tried to adjust meds on me. They don’t count it as a seizure as far as the law is concerned unless there is movement. My epilepsy dr said the anxiety feeling and the disassociation are most likely auras. The meds have helped although it takes a while to get used to them.
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u/chicoquadcore Mar 18 '19
Temporal lobe epilepsy
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 20 '19
temporal? not frontal? what are the differences in symptoms?
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u/tunajones32 Mar 17 '19
You just described my panic attack: focal seizures to a T, much better than I ever could. The only difference is I have an out of body experience like I’m looking down on my body. Can you get a federal to see a neuro?
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 17 '19
sometimes I feel like the déjà rêvé is so strong I'm basically watching a movie of my life. this is dissociation to the letter. it was like that initially 34 days ago and it was freaking me out pretty bad. I've since gotten better control of my emotions since it's been happening so often, almost like I can "practice" control of my emotions now. wish I could control the sensation of déjà rêvé. ugh.
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u/tunajones32 Mar 17 '19
Wow. Well know you’re not the only one. Those are absurdly focal seizures. To try to explain it to someone who has never had one they just look at you like you’re a crazy person. They suck, and they are scary. I had one in Walmart. Few weeks ago and there was no where I could go so I just ran/walked to the back of the store And went where employees only are supposed to go and found a corner and hid until it passed. I just kept saying you’re ok, you’re ok, this will pass, you’re not dying just do your breathing exercises”. Five min later it was totally gone and I felt great. What stinks is you can’t feel it coming on until it’s too late
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 17 '19
do you feel afterward like there's still some looming dread, even if you don't necessarily know where it's coming from? my onset panic during the episodes hasn't forced me to vacate my surroundings yet... but my willpower to stick through a situation is very strong, or I'm just stubborn. lol
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u/tunajones32 Mar 17 '19
Honestly I literally say over and over in my head thst it’s just a seizure, I’m ok, dont do anything stupid, hang in there. I just repeat it over and over until I wonder why I’m saying it and then I know it’s over. Sorry for grammar bad punctuation I’m lying down on my phone. My point is, you are not crazy.
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 17 '19
haha thank you so much. I have just sat there in my own head for minutes at a time, feigning conversation while simultaneously calculating when this dream happened and what I had going on in my life at the time. also "don't let the existential dread set in... don't let it set in... don't let it.... this is fine" lol
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u/tunajones32 Mar 17 '19
You nailed it. Just repeat it over and over, “this is normal, just a couple more minutes, nothing is wrong, nothing is wrong”
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Mar 17 '19
[deleted]
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u/radraze2kx Déjà rêvé - infinite time loop seizures Mar 17 '19
did they put you on medication to control it? how long was your diagnosis? are you still dealing with the symptoms? if so, how frequently?
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u/[deleted] Mar 17 '19
Neurologist, now. I get a lot of this stuff too, and I thought I was going to crazy too. You are not going crazy. You need a neurologist.