# Seizures/Derealization



## DeeAre (Mar 21, 2009)

Hi all,

I'm new to the board and so glad to have found a group who experiences similar things. While I've found that I can relate to a lot of the symptoms you all have, I still wonder if I'm actually in the right place.

I've always considered myself to have little "flashes" of derealization but this past Friday I had an episode that prompted me to research DR and seek out others who may have experienced something similar. I was driving down the road and had information come to me in a "flash". It was as if all of the sudden I had a huge amount of "understanding" and I realized that what we see and comprehend is only a tiny bit of what is out there and can be comprehended. I was struck with tons of questions that I couldn't find the answers to, such as why are we here, who are we, why can I acknowledge my existence yet not fully understand it, etc... In a few seconds it was as if I was brought to another reality, a "2nd level of consciousness", yet I could still acknowledge the "first level of consciousness". In all honesty it reminded me of the movie The Matrix and explaining it reminds me of that one person scribbling all those figures on the wall, yet no one comprehends them and looks at the person as though they are mad. I feel like I'm losing it at times!

There have always been questions that I've been aware of but don't acknowledge all of the time...I try and not really think about them because I feel like answers aren't really attainable at this point. So I go on about my life, in the first level of consciousness and interact with my world and try not to question my existence. But this last episode or "flash" has brought me to a different level, one where I'm constantly aware of this 2nd level of consciousness, where I zone in and out of both levels and go from feeling somewhat "numb" to alert and aware. The 2nd level of consciousness is really, really odd...I can acknowledge my existence as part of the human species, but feel connected to something bigger that I can't wrap my mind around. When I think about it I think back to all of the philosophers over time, all of the different religions, all of the scientists and think about how hard they've worked to figure out our existence and figure out our place in this world. It's really strange to me that we are in a world where we have to work to uncover who we are and why we are here and that we actually have the ability to attempt to do so and then self reflect.

I can relate to a lot of the feelings that you all have described but it's not "hell" for me. At times I get really freaked out and paranoid, but I don't let it get the best of me. I wonder if it's possible that I'm in the beginning stages and just haven't experienced the really bad stuff yet.

Something that struck me as strange is that I've had numbness in my mouth and lips since that last episode on Friday. The very top layer of my tongue where my tastebuds are feels partially numb and my lips feels like they've been numbed from dental work and they're starting to get their feeling back. I told a friend of mine who is a psychiatrist about the whole situation and he seems to think there may be something neurological going on.

Back in August I had what they thought was a seizure. I woke up one morning(after not being able to sleep very well), woke my son up then went to get a drink from the fridge. Last thing I remember was taking a very cold drink of coke and it being so cold that it took my breath away. Next thing I know I'm hearing "Momma, Momma!" and I sat up gasping for air. My son found me in the kitchen on the floor with my eyes open, "shaking" (he later showed my mom and I how I was positioned on the floor and the movements I was making and it appeared to be very minimal "twitching"). What's strange is that when I sat up I thought I was opening my eyes, but apparently they were open the whole time. After I sat up I realized I had bitten my lip so hard it had a gash from my tooth and it was swollen and my head was swollen as well from hitting something on the fall. When I stood up I realized I had wet my underwear and it hit me then that I might have had a seizure. I called my mom and she told me to hang up and call 911. The hospital ran tests...CT Scan, MRI, EEG and found nothing. They recommended I see a neurologist but I was never able to see them b/c I don't have insurance. (yes, I have a huge hospital bill!)

So now I'm wondering if it could all be related...the episode last August, the episode this past weekend. It's just all so strange because it's almost like it's a frame of mind, not a just physical occurence every so often. But then I'll have these strange physical symptoms, such as passing out and a numb mouth that tend to accompany the frame of mind every now and then.

I know you all aren't doctors but I wanted to know if anyone ever experienced anything similar to this. I'm a student and I think I'll qualify for medicaid and I'm finally desperate enough to seek some help. Hopefully I'll have some answers soon although I have a feeling it's gonna be a long road...


----------



## Guest (Mar 23, 2009)

Sorry about all that. IMHO I'd pay the money to go to the neurologist and have all of the information you have sent over to him/her. That does sound like a seizure, and the DR could be considered part of an "aura" -- though the two aren't happening simultaneously? Sorry I forgot again! It worries me that you have numbness of the mouth, etc. I'm no doctor, but it sounds like something neurological, and having DP/DR are indeed common in many neurological disorders.

Pay the money. Or get the Medicaid. Also, if you are a student, I believe you are eligible to be on your parents' health insurance, or can get your own.

Also, this sort of reminds me of that show, "Mystery Diagnosis" where they have to dig around to find a cause that might be say metabolic or another illness causing these symptoms. Regardless of going into debt. IDK, I'd see a neurologist.

Again, IMHO. Also, sometimes an EEG or all the other tests might indeed come back "negative" or "normal." What is good is you now have "baseline" tests that can be compared to retesting to see if there are changes. Sometimes you need to stay overnight to be observed in a sleep clinic to see if you have seizures while you are asleep.

A friend's husband has a major seizure disorder. It started at age forty. They have never found a place in the brain that caused it (on CAT, MRI, etc.), but he has all sorts of odd symptoms and has TLE or complex partial seizures or sometimes grand mal seizures. Medications have helped him greatly. He DOES have abnormal EEGs, particularly during a seizure ... reason for overnight observation. They wanted to catch him having a seizure.

I wish you luck figuring this out.
D
Also, you might want to Google an epilepsy support board -- forgot if you mentioned that. Tell your story there as well.


----------



## Guest (Mar 23, 2009)

I definately can relate. Since the age of about 6 or so, I've had bouts of sleep apnea, and what I now believe is narcolepsy. I always had sleep paralysis and extreme daytime sleepiness and muscle fatigue. Then recently during my sleep paralysis episode I found myself shaking and fighting to wake up. I'm aware of all this as it's happening. I also feel an aura when it comes on and is always during my sleep. I really got worried when other symptoms showed up: electric shocks all over my body, especially my head. Numb forehead, fingers and toes. And like you mentioned a permanent state of mind where I feel like my brain is frozen, or like I'm stuck in a state of shock. Had to wait four months to get approved for medicaid and eventually went to see a neurologist(after35 years). EEG came back normal, but would like to go in for an overnight one since it happens in my sleep. Right before I went in for my brain mri(normal), the technician asked me if I had epilepsy because it was written in my report. Neurologist never mentioned anything to me, besides saying all tests were normal. But there can definately be a link there.


----------



## DeeAre (Mar 21, 2009)

Dreamer* said:


> Sorry about all that. IMHO I'd pay the money to go to the neurologist and have all of the information you have sent over to him/her. That does sound like a seizure, and the DR could be considered part of an "aura" -- though the two aren't happening simultaneously? Sorry I forgot again! It worries me that you have numbness of the mouth, etc. I'm no doctor, but it sounds like something neurological, and having DP/DR are indeed common in many neurological disorders.
> 
> Pay the money. Or get the Medicaid. Also, if you are a student, I believe you are eligible to be on your parents' health insurance, or can get your own.
> 
> ...


Dreamer-- I live in a constant state of questioning everything so when I had an episode on Friday I just thought I was intensely questioning things and that I was having an extreme episdode of DR. It wasn't until I told my friend(the psychiatrist) that my lips/mouth are numb (he's familiar with history and my seizure last August) and he correlated the 2 and said he thought it was more than just DR, that it could be seizure activity. I honestly just thought I was going freaking crazy! Which still could be the case but actually having physical symptoms makes me wonder if it's more. I definitely will go see a neurologist about it...my mouth is still numb and tingly after 5 days. It's starting to freak me out even worse.

I agree, I feel like I should be on an episode of House or something!!

I will also look for an epilepsy support board...that's great advice. Thanks for responding and your encouragement!!


----------



## DeeAre (Mar 21, 2009)

DpDream said:


> I definately can relate. Since the age of about 6 or so, I've had bouts of sleep apnea, and what I now believe is narcolepsy. I always had sleep paralysis and extreme daytime sleepiness and muscle fatigue. Then recently during my sleep paralysis episode I found myself shaking and fighting to wake up. I'm aware of all this as it's happening. I also feel an aura when it comes on and is always during my sleep. I really got worried when other symptoms showed up: electric shocks all over my body, especially my head. Numb forehead, fingers and toes. And like you mentioned a permanent state of mind where I feel like my brain is frozen, or like I'm stuck in a state of shock. Had to wait four months to get approved for medicaid and eventually went to see a neurologist(after35 years). EEG came back normal, but would like to go in for an overnight one since it happens in my sleep. Right before I went in for my brain mri(normal), the technician asked me if I had epilepsy because it was written in my report. Neurologist never mentioned anything to me, besides saying all tests were normal. But there can definately be a link there.


DpDream-- Now that you mention it, I've always had sleep problems as well and my dad has sleep apnea.(he has to use a C-pap machine when he sleeps) I had one episode about 5 years ago where I woke up gasping for air and I had wet myself...looking back on it now, it was extremely similar to my episode this past August except I was sleeping. I thought it was due to having drinks the night before and I was embarassed for wetting myself so I never told anyone except my ex-husband(husband at the time) about it!

My whole life I've only woken up ONE TIME feeling completely rested. I still remember it to this day too, because I felt like a complete human being. I've always thought that I just have a busy life and don't ever get enough sleep but I'm wondering if my episodes might be related to sleep as well. It doesn't matter how much sleep I get...8/10/14 hours...I still feel tired!

I think I'd like to get some tests done at night too because of my one episode I had. I wonder if the EEGs would show something different. Are you planning on having some overnight tests done? That's strange that the technician would ask about Epilepsy if you'd never actually been diagnosed...did you ever ask your neurologist about that?


----------



## pabloff9 (Jun 28, 2016)

DeeAre said:


> Hi all,
> 
> I'm new to the board and so glad to have found a group who experiences similar things. While I've found that I can relate to a lot of the symptoms you all have, I still wonder if I'm actually in the right place.
> 
> ...


Hi DeeAre. I think I have never found someone describing in such detail something I went through a couple times myself -- the "second level of conciousness" thing as a extreme case of derealization. It seems the other posters here don't exactly grasp what it is you're describing, but I know exactly what that is. I wish to talk a bit about it, if you're still around (I know this post is years old, but bear with me). I sent you a message. Take a look, please.


----------



## DeeAre (Mar 21, 2009)

pabloff9 said:


> Hi DeeAre. I think I have never found someone describing in such detail something I went through a couple times myself -- the "second level of conciousness" thing as a extreme case of derealization. It seems the other posters here don't exactly grasp what it is you're describing, but I know exactly what that is. I wish to talk a bit about it, if you're still around (I know this post is years old, but bear with me). I sent you a message. Take a look, please.


Wow, it's been quite a while since I posted - it's so strange reading and rembering it all. My second episode I described I ended up going to the hospital and was diagnosed with Bells Palsy which explains why my mouth kept going numb. Years later I was diagnosed with Hypothyroidism which I'm not sure has any connection to any of my episodes but interesting to consider after the fact. I haven't had any major episodes since then but I do still have little flashes of derealuzation where I feel not if this world. It's really strange! I will message you back. It's strange that there are other people that experience something similar, but also a relief in a way


----------

