Fear of death since last seizure

[Blue Eyes]

I've always imagined death to be a transition from here to the afterlife. I imagined seeing loved ones welcoming me to the other side. Not anymore. During my last seizure that horrible dread so many of us experience at the outset included a very real feeling that I was dying. I experienced it as an implosion into myself, into a darkness. During this time, and before losing consciousness, my hearing was fading and I lost my sight. It felt like my systems were shutting down and would continue until I was dead.

I tell myself that this experience was simply the manifestation of electrical activity in my brain. I also thought (during the seizure) that my friends who were there with me were going to drown me. Of course that wasn't reality. So I should be able to let this death experience go. But I can't.

At night, in bed, I think about it. I fear dying now in a way that I did not before. I fear shutting down into eternal nothingness, just disappearing. I guess it's a little like PTSD. Can anyone relate?

Blue Eyes

 

[Malla]

Hello Blue Eyes.

Yes I can relate, but I had a different experience of the dying part. I felt nothing (because I was put to sleep with medication - WITH seizures still ongoing by a team of psychiatric folks....) and all of a sudden I was standing in a glittering river, surrounded by mist - until two men dressed in red robes came towards me. I asked if they were angels, and they answered: "Yes, sort of" then they ushered me back into this "reality".

I had no idea where I was and I did not know anybody...

In another sleep seizure state, I heard a lot of rumbling in my apartment - then I got out of bed (still in sleep) and found a few men taking my furniture out through the window. I asked them what was going on, and they told me basically I was done with this life.

THAT was a scary experience and it has haunted me ever since. I do believe there's something after death - I just don't know what - and I am concerned about the fact that I have never met anybody I know....:/


Hugs Malla

 

[Blue Eyes]

Thanks for sharing your experience, Malla. You DO know exactly what I'm talking about. "Haunted" by the whole ordeal is a good word.

Blue Eyes

 

[Malla]

Indeed sweety... gotta stay strong... Even if it freaks us out..

 

[petero]

. ... I fear shutting down into eternal nothingness, just disappearing. I guess it's a little like PTSD. Can anyone relate?

Blue Eyes

my TC periods have included a sort of shut-down, but this has (as I recall from Sunday's) been a bit like drifting to sleep while conscious and not itself all that bad of an experience, because I'm disappearing, and my perception is to, and judgment. that period of time is brief. then nothing. the worst part for me is waking in blur-world where it has been like having a piece of something stuck in my eye or in my throat, but it's stuck in the entire world experience, and it doesn't shake and I more and more realize that this isn't just like waking up from sleep, because it won't shake like sleep. but I'm out of it. I can gradually realize orientation and on Sunday I was able to figure out I'd had a seizure somehow, maybe my mom told me.

I need to continue later
I want to put this stuff in creative writing anyway

I think we can all relate in our own ways.

 

[Cint]

During this time, and before losing consciousness, my hearing was fading and I lost my sight. It felt like my systems were shutting down and would continue until I was dead.

So I should be able to let this death experience go. But I can't.

Can anyone relate?

Blue Eyes,

I've had bad seizures over the past 30 years and have been severely burned because of them. I've also gone status and when I did, I remember during the "aura", losing my vision and my hearing was slowly fading away, until........ lights were out. Next thing I remember, I was in the hospital, not recognizing anyone or remembering who I was or my name and I could not speak for hours. It bothered my children when they were growing up more than it did me. I reassured them that I was okay. I wasn't afraid back then nor am I afraid now of dying. It is part of life.

 

[petero]

Next thing I remember, I was in the hospital, not recognizing anyone or remembering who I was or my name and I could not speak for hours.

there is absolutely no way to convey to anyone what it's like to experience this - I was reading it thinking "yep yep" and had tried to explain to my mom (who witnessed my seizure on Sunday) over the past couple days (she was the only one in presence and handled this seizure period fantastically) what that's like to experience, from mild to severe versions of this experience - there's no way to convey

 

[nicholas:)]

I can relate to this. I've had hundreds if fits so you would think the fear would go, but each new fit is like having one for the first time and the fear is as frightening. I had a heart attack in 2008 and I fear having another one. After my heart attack I was frightened to be alone and it was worse at night because I live alone, I would sit up in bed just in case something was going to happen to me. Now I'm on meds that make me drowsy and I drink a hot drink of drinking chocolate- this relaxes me somewhat
xx

 

[Endless]

All,

I so understand. Seizures can be so scary. And we all tend to attach our own meanings to them. I know I did. There are some alternative, research-based explanations that might help to understand them in a different way.

Losing sight, hearing can be a seizure, or it can just be passing out. Losing senses can be part of the passing out process. If you have witnesses seeing you seize during one of the loss of senses events, it's pretty plain that it's a seizure.

A feeling of imploding or falling down a hole can be a simple partial seizure leading to a generalized seizure. Take a look at Alice in Wonderland Syndrome.

http://www.epilepsyontario.org/clie...dly/Alice+in+Wonderland+Syndrome?OpenDocument

http://www.aliceinwonderlandsyndrome.net/Alice-in-Wonderland-Syndrome-Symptoms.html

Having strange visions, feeling weird body sensations, spiritual experiences, hearing voices, etc. can be ictal, preictal, or postictal psychosis, Alice in Wonderland Syndrome, or just another effect of the seizures. Especially if your seizures start in the temporal lobe. Fear seizures are the worst, and most often come from the amygdala. It feels like a deer in headlights, or how you'd feel if you jumped off a building and you're half way down. Thank goodness it lasts under 5 minutes. Mine last under 3, most often under 1. I'm totally wiped out afterwards and sleep for a couple of hours. Operant conditioning - it makes me afraid of many things whether I'm seizing or not. Mostly things that were around me or that I was thinking of just before a fear seizure, and sometimes afraid of multiple things I didn't realize were around me until it happened again. For those that have this kind of seizure, this could also be part of why you are afraid all the time.

Psychosis - Seizure-related psychosis can happen in 6% to 10% of patients with intractable (uncontrolled) epilepsy. Take a look at this thread. It'a talking about a feeling of mind control, but it would apply equally to seeing something that isn't there, like people moving furniture out, a feeling of other-worldly, hearing and seeing things, not hearing and seeing things, seeing them wrong, etc.

http://www.coping-with-epilepsy.com...-has-experienced-type-thing-14273/#post147072

I don't know how many of you have temporal lobe epilepsy, or have generalized epilepsy that starts in the temporal lobe. Religious experiences (good or bad) are also part of temporal lobe seizures.

http://www.ncbi.nlm.nih.gov/pubmed/18171635


For better or worse, these are other explanations. I don't know about you, but the more my logical mind understands the research findings around epilepsy and its effects, the less scared I feel about it all.



Adding more links. Interesting reading on the topic of seizures and fear or other emotions or experiences. Look in the upper right-hand corner of the abstract (summary) page for a link to the whole text of the study. Some resources to see the whole article have free membership and access, others don't. Abstracts are free. Often I find seeing the abstract is enough.


Phenomenology of hallucinations, illusions, and delusions as part of seizure semiology

Fear as the only clinical expression of affective focal status epilepticus

Interictal emotional state and epilepsy.

Psychosis with frontal lobe epilepsy responds to carbamazepine

Which clinical and experimental data link temporal lobe epilepsy with depression?

Ictal symptoms of anxiety, avoidance behaviour, and dissociation in patients with dissociative seizures

Evaluation of a behaviour analysis and treatment of progressive myoclonus epilepsy, type Unverricht-Lundborg: a case study

Acute alteration of emotional behaviour in epileptic seizures is related to transient desynchrony in emotion-regulation networks

Extinction deficit and fear reinstatement after electrical stimulation of the amygdala: implications for kindling-associated fear and anxiety.

Neuropsychiatric and memory issues in epilepsy (free full text)

Recurrent attacks of fear and visual hallucinations in a child


There's more but I'm getting a really bad headache so if you want more info go to http://www.ncbi.nlm.nih.gov/pubmed/ and do a searhc. it's the NIH publications data base.


.

 

[Endless]

I hate to be a wet blanket, but I'd be amiss if I didn't mention one caution we face that actually is death. Sudden Unexplained Death in Epilepsy (S.U.D.EP.). It's rare, but everyone deserves to know it is a possibility.

SUDEP, an abbreviation for sudden unexpected (some say “unexplained” but “unexpected” is the official term) death in epilepsy, is an almost self-explanatory term: it applies to a sudden death in someone known to have epilepsy, in the absence of an obvious cause for the death. Although most instances are presumed to occur during seizures, not all do and a seizure at the time of death is not a requirement for diagnosis of SUDEP. A widely accepted definition of SUDEP was proposed by Nashef in 1997: “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom post-mortem examination does not reveal a structural or toxicological cause for death....

The incidence of SUDEP ranges in different studies from 0.9 – 93 cases per 10,000 people per year (Tomson et al. 2008). This large variability depends upon study methods, but also on the population being studied. In a large community population where the majority of epilepsy is controlled, SUDEP rates are in the range of 10-30 SUDEP cases per year among 10,000 people with epilepsy. Mortality is much higher among those with uncontrolled epilepsy serious enough for them to be considered to be candidates for epilepsy surgery, ranging from 63-93 SUDEP cases per 10,000 people each year. ”

http://www.epilepsy.com/EPILEPSY/sudep_epilepsy

The article also goes into the causes of SUDEP.

I wouldn't lay around at night worrying about it - the odds of SUDEP are quite low, 1 in 10,000 for most. If I had those low odds in Vegas I wouldn't even bother betting; I'd sail through the Casino without giving it a second thought. We have a much higher chance of going from another disease or an accident, which are things that everybody (not just people with seizures) face.

People who have autonomic seizures might do well to sleep with a friend (fun!). But again, no worries, okay?

 

[nicholas:)]

I am conscious when I have my nocturnal fits- when one strikes you lose control, you become in the grip of something scary.. there is nothing you can do about it. ''shutting down'", all "going black"and the choking, the arms hitting you in the face, the legs shaking like in an electric shock are all so scary. Like you all, I hate them; I fear them so I'm pleased my meds has cut them way down
xx

 

[huskymom]

I look at it this way....I am not any more scared of seizures than I am of being hit by lightning or by a bus. I just refuse to live that way. We only get one chance, and I am not going to spend it in fear. All of these things we have no control over. I know that you have fear, but try to relax. We are all going to have to leave this life at one time or another, there is not one thing that is going to change that. Try not to spend hours worrying about it. There is no way to know what will happen. Just live you life as happy as you can, surround yourself with people that you love, be a good person and enjoy the ride.

 

[petero]

... - then I got out of bed (still in sleep) and found a few men taking my furniture out through the window. I asked them what was going on, and they told me basically I was done with this life.

Hugs Malla

I hope my furniture doesn't follow me around after I die.
I have sh*tty furniture - lol

 

[lightbearer]

Feel like Im dying

I've jst started having the symptoms of feeling like im dying,,happened a couple days ago and a few years back I almost died from having them in my sleep, andd the doc. doesn't take it seriously.
Who should I go to even see if I am epileptic? Also my left foot and mainly my toes are dead feeling since the incident two days ago...is that part of it too?

 

[Fscene8]

Interesting. Vice versa goes for me.
I used to be afraid of death for a month or so until I got a seizure. I don't know, every thing I'd see would associate me of my own death.
For example: walking down the street, seeing cars and imagining someone pushes me and I die.
It felt so real. That would give me a shock for 2 seconds.
Later on, I got a seizure (long story, lol) and ever since then I've never had any issues with thoughts of death