Epilepsy Talk

People Talk About Their Out-Of-Body Experiences | December 1, 2017

Alterations of consciousness are critical factors in the diagnosis of epileptic seizures. Some people report sensations of separating from the physical body, experiences that may, in rare cases, resemble spontaneous out-of-body experiences.

New research has linked these experiences to instabilities in the temporal lobe, and to errors in the body’s sense of itself — even in healthy individuals.

With simple partial seizures, some people report having out-of-body experiences. Time may seem distorted as well.

These out-of-body experiences (OBE) can vary from person to person, but they often involve the sense of floating above one’s actual body and looking down. For neuroscientists, the phenomenon is a puzzle and an opportunity: Understanding how the brain goes awry can also illuminate how it is supposed to work.

Among the patients who have had out-of-body experiences, some reported “being attracted by a spiral, like in a tunnel.” Others described “entering my body, like in an envelope, from the top.”

“Seems to be that all of us can be placed somewhere along a sliding scale, based on how unstable or erratic our temporal lobe is, and some people are more prone to these experiences,” said study researcher Jason Braithwaite of the University of Birmingham.

People speak of their own experiences:

“The best way I can describe it is that it was like watching television in your mind.”

“First experience: Young teenager, lying on my bed,  focused on a point on the wall, felt myself floating, went through a wall like in the movie Ghost.”

“I used to have ‘night terrors’ starting at around age 6 until age 9 or 10, always after some sort of feverish state. I would go to sleep and soon awaken to the feeling of my body expanding and vibrating beyond it’s apparent physical limitations, this would be accompanied by a rumbling sound, gradually growing louder in my head. It was like the engines of a jumbo jet starting up until eventually it would drop into a continuous high pitch tone which would finally fizzle.”

“This paralysis lasts for a few minutes. I then return to normal. I have no warning when these episodes will occur. They do not link in to any particular life event, illness, etc. I have experienced them over more than three decades, but not for the last couple of years.”

“My back was on the ceiling and I was looking at my body laying there, and it was very freaky. While out of body I was just staring at my nose and freaking out a little but something told me you are gonna be alright.”

During these times I was out of body 6 to 8 hours and felt a great sense of urgency to get back asap. I could not go into buildings, homes or cars. I could see or sense the essence in those locations. I could locate a person very fast if I had something personal of theirs, especially if they wore or had it on the person recently. I could sense what I call their essence. It was more of a floating experience.”

“I saw the trees get smaller, then I knew I was in space because I saw the earth, then I saw our solar system, the speed increased to a point where there was no speed. I was in a new place so far away in locale from Earth that none of our published research has disclosed.”

“I found myself in a tunnel whose walls were fuzzy, like a white thick fog and slightly illuminated, like under a cloudy overcast. I was stationary. I asked myself if there was an end to this tunnel. Then I was transported through this long tunnel of which I first saw no end, then an extremity of a blackness of space, then a star, then several. I got out of the tunnel to find myself in a space full of stars.”

“I looked up to my bedroom window and in the next moment I was standing next to me.”

“The floating feeling feels like something is taking me away. I don’t know how else to explain it. Taking me away, or trapping me, and immediately I have an overpowering urge to fight it. That’s where the paralysis part comes in. I feel like I’m under a hundred feet of water, or like I have chains around me. I try to move my arms and legs and I can’t or if I do manage to, it’s with an incredible lethargy and it’s so slow, so feeble, that it’s useless. Sometimes I try to shout or scream, and I can’t make any sound come out. “

“Almost anyways, my body locked and it felt like i just slipped out of my body. My surroundings were blue and i was standing beside my bed and it looked the same as reality but I woke in excitement.”

“It’s the weirdest thing ever. It’s like your hypnotized.”

“Interestingly though, several years ago around 2002/2003 I went through a phase of a span of about 2 to 3 years of having intense OBEs multiple times a week, and sometimes multiple times per night. But over the years and currently, they have become less frequent (or my awareness of them have decreased). It’s almost like I “been there, did that” kind of thing, almost as if I needed to have those experiences at that time in my life. I accept and embrace the OBE experience for what it is, very real to me and a life/belief changing experience.”


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  1. Wow. Compared to the above, my seizures are very boring. It is either the traditional tonic-clonic with no awareness or a partially aware state with the worst stomach ache of my life. Boring, boring, boring. I get staring episodes, too – but who remembers them? Evidently my seizures do not hit the imaginative part of my brain. I wonder why these differences occur among us?


    Comment by Kate Jacques — December 1, 2017 @ 9:47 AM

    • That’s an excellent question.

      Apparently, these experiences are due to instabilities in the temporal lobe, and to errors in the body’s sense of itself.

      So, I guess you’ve dodged the bullet, so to speak. 🙂


      Comment by Phylis Feiner Johnson — December 1, 2017 @ 10:40 AM

  2. Another great article 🙂 Just saw a minor typo, tho – “this would be accompanied by a rumbling sound, gradually growing loader* in my head.”


    Comment by Liz Caldwell — December 1, 2017 @ 11:05 AM

  3. Hi Phylis,
    Thanks for sharing this info. I’ve been following your blog for several years, and have learned quite a bit by reading the articles, but also reading other people’s stories.
    This latest topic is very interesting to me and is perhaps related to something my adult daughter has been experiencing for many years. She has mentioned having some of the same OBE’s listed in the article, but in addition she often “sees and hears things” like animals and unusual creatures. They haven’t been scary or bothersome for the most part. Just a couple of times, have they been so scary that she wouldn’t want to stay in her room alone. Otherwise, she’s quite content with the fact that these “visions” are part of her life. And the visions don’t seem to be related to actual seizure activity, they happen anytime and much more often.
    I won’t go into detail about all of the doctors we’ve dragged her to see, so we could get some answers on how best to deal with this phenomenon. One doctor diagnosed her with Schizophrenia, NOS, and others disagreed, saying she didn’t have the other symptoms necessary for that diagnosis.
    She’s tired of talking to docs and therapists about this, because nothing they’ve ever tried has changed anything. If anything, certain meds they prescribed had side effects that made things worse.
    Would love to hear if anyone out there has any experience with hallucinations and seizures.
    Thanks for reading…


    Comment by Deb Martin — December 1, 2017 @ 4:04 PM

    • The only hallucinations I know are those of auras, a precursor to a seizure.

      Here are some types of auras that can happen alone or in combinations…

      Visual changes

      Kaleidoscope effects

      Visual hallucinations

      Shimmering sensations

      Vibrating visual field

      Distortions in size, shape or distance of objects

      Bright lights or blobs

      An article that MIGHT shed some light on things is:

      The Four Stages of Seizures – Prodromal, Auras, Ictal and Postictal


      I hope this has been of some help.


      Comment by Phylis Feiner Johnson — December 2, 2017 @ 9:15 AM

    • Deb,
      I knew life before Epilepsy & now, I’ve been learning the hardship of life with Epilepsy.
      Now, Imagine getting banned from the Public Library by the Police & the Librarians who knew me a whole lot longer before I came up with Epilepsy, for my Petit Mal triggered HALLUCINATION & DISORIENTATION?
      Then, Imagine being suspected for illegal drug overdose for another Petit mal seizure triggered HALLUCINATION & DISORIENTATION & handcuffed to Ambulance bed & ER hospital bed for two days, until your friends showed up at the hospital & INSISTED the Doctors release you before being sued for medical malpractice?
      Therefore, I suspect that while the main culprit of my hallucinations & disorientations are most likely related to my seizures, I think the side effects of my medications are partly to blame for the some of the consequences I got to learn to live with.
      Infact, I’ve learned to expect potential psychological disorder from the constant dependency of my seizure medications.
      Obviously, these medications made to stop/reduce seizures are certainly going to leave deep marks behind, just like any chemical being used by the brain/body.
      I wish & hope your daughter stays strong enough to overcome all odds.


      Comment by BahreNegash Eritrea — December 2, 2017 @ 12:53 PM

  4. I have the tonic clonic seizures when I have them, and I know also what my brain is always getting fed to it from foods, drinks & drugs. I am always watching what foods I am able to eat, what chemicals are in the AED Lamictal XR I am taking, knowing that other AED’s would be murder for me to even try to protect my brain, knowing they would abuse it more than help it. So since i know that no ALUMINUM, like in Aluminum Lake, in most AED’s gums, and other chemicals which are MSG’s & can cause or trigger seizures & seizure activity, and knowing that most to every GENERIC NAME drug which I use BRAND NAME Lamictal only,, the things I will never do, maybe the the reasons as to why people with different seizure patterns have them because of the things I will not allow my brain to be abused from. I know at times the GRAND MALS,, aka tonic clonics will make you feel after the seizure is over, that you do not know where you are at for maybe 5 to 10 minutes until you someone tells you what had just happen in the last 10 to 30 minutes. You only want to be left alone & sleep just wishing you could die & never experience anything like that again ever. There are dreams that people have, & there are DREAMS that people have that never come true. Reality is that people with dreams of a seizure free life,,, nobody cares WHO sees that dream come true in the medical, VNS / gadget & drug worlds, because we are just part of their money making system, and that is not to be changed for nothing to help 1 person or over 65+ MILLION with seizures to be seizure free. More reason that DEATH could be the best answer for those who have no hope for any seizure free life, no matter how you can best control seizures from happening.


    Comment by C D — December 1, 2017 @ 6:12 PM

    • I think death is being a little extreme.


      Comment by Phylis Feiner Johnson — December 2, 2017 @ 9:16 AM

    • C D,
      For the last 5 years, I’ve come to know a crippled homeless veteran on wheelchair staying by the train station, rain or shine, hot or cold in my neighborhood.
      Every time I said “Hello, How are you doing”?
      He always says,,, “I’m OK, I’m trying hard, to make it to the next day”.
      Every time I hear his answer, I get to deeply think about “making it to the next day”.
      Noticing his conditions for years & considering his determination to make it to the “next day”, I ask myself “How are my seizures any bad than being cricrippled homeless veteran on wheelchair, routing on the street, trying hard to make it to next day”???

      Realizing that some people are strong enough to keep struggling everyday, I’ve come to learn that Life is all about willpower & determination more than it’s about the crippling disorder/disability.

      Epilepsy is definitely crippling disorder & so is blindness, cancer, heart attack, diabetics,,, but people continue to fight all the odds.
      Therefore, life is about making it to the “next day”, like I’ve learned to know from a cripple homeless veteran on wheelchair.
      Some times, it helps to look around & see that some of us are having harder than others, but more determined to overcome all the odds.
      I hope this post/message will help you to see a whole lot more bigger picture about life, than just Epilepsy & having seizures.


      Comment by BahreNegash Eritrea — December 2, 2017 @ 10:59 PM

  5. I’ve had full out of the body experiences, as well as being in the world but separated, I’ve recently been rediagnosed with pnes and dissociation, caused by ptsd where I wanted to hide from scenes couldn’t cope with in n Irish conflict, so there are other reasons


    Comment by Gail Barry — December 3, 2017 @ 5:52 AM

    • Gail, didn’t they give any credence to your out of body experiences? Or did they seek other answers because they couldn’t handle it.

      I understand the diagnosis, but I still wonder. I’d say the out of body experiences were real, even though they lasted for a finite time.

      Many people “grow out” of them.


      Comment by Phylis Feiner Johnson — December 3, 2017 @ 10:13 AM

  6. I had an “out of body experience.” However, my mother was there and traced it to when I was in status epilepticus and had been pronounced dead after aspirating and having a heart attack. I believe I “saw the light,” as I am a devout Catholic. I felt no pain in my body for once, and I have been physically disabled since I was 14, so I know pain well. I saw an amazing white-yellow, brilliant light. It washed over me and I felt light. Then everything went black, and I heard murmuring around me. I was afraid I was going to purgatory. Then sudden blackness. My mom later told me the doctors revived me after a few minutes and placed me into a coma to preserve brain function. I was in a coma for a month. She was told I would never walk and talk again. After a month of intense speech and physical therapy, I went back to work as a community reporter.

    It may have been what you mentioned above. It’s good to know there is research now. That was in 1995. I will never know. All I know is that I am still alive.


    Comment by megambon2164 — December 4, 2017 @ 9:51 AM

  7. True. I actually flat-lined. Not sure where I was in the process. Good to know. And like you investigated, there is research now. Good work!


    Comment by megambon2164 — December 4, 2017 @ 10:44 AM

    • Thanks Mary Ellen. I had a near death experience but “never saw the light”. Nonetheless, I find the whole subject and its many incarnations fascinating.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — December 4, 2017 @ 10:47 AM

  8. Thanks for all your information to this page, but as I sit here its so frustrated to get trigger by things you didn’t wanted to happen and without nowing you get a seizure, and especially if you can’t feel or nowing the seizure is going to happen its so embarrassing for me being between family friends and workplace. That why I’m staying at home on my off days


    Comment by leone — June 7, 2018 @ 8:28 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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