petero
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I've never really talked with a counsellor thoroughly about my seizures and frankly I'm not really sure how to tell what's what. I was diagnosed in 2008 after I had a seizure at work and then one with my mom and dad and brother. I live alone so there's no way for me to really have an extended outside perspective of my behaviors.
One question I have is (diagnosed at age 38, now 41) could I have had a seizure disorder for quite a while? throughout my life?
since being diagnosed I've tried to pay attention to what might be seizure related issues (but I'll also add I'm a recovering alcoholic, 8 yrs, so waking up in pain was a regularity, and throughout the day, nausea, feeling "out there" etc, even though I'd just drink at night) but I'm not quite sure at this point what "normal" is.
Do seizures get more prevalent when the tonic-clonic threshold is breached? I've heard this is the case. And so when I have obvious bruises, scrapes, etc, and I don't know WHY, that now seems to be a pretty good indicator.
When I can associate some sensation I'm feeling that is an extreme nature, that I can now affiliate with something I've read online, or heard mentioned from what brief interaction I've had with doctors, I now try to affiliate that with an aura or a simple partial seizure, or something(?).
I also smoke a bit of weed. But these sensations aren't like getting high, because if they were, I wouldn't want to get high.
But since my last trip to the ER Dec.2010 I've had a hard time coping with reality, frankly. I try to just talk myself down through these issues by saying this is just part of epilepsy. The recollections of brief periods of interaction with people (during what I guess was a post-ictal, partial seizure, simple, "psychotic episode" (from all I heard from the hospital)) have persisted as an imposition in my life. Is that typical of seizures? of "psychotic episode"s?
It seems I might recognize people from the hospital (I'd never been to that ER before), or maybe just people that resemble people from the ER, and it'll send me into strange thought processes that I did not experience prior to that seizure episode at the ER. I despise that trip to the ER. I woke up at home in unbelievable pain, calls and a visit from my mom finally spurred an ambulance trip. I was barely able to walk from a massive migraine and body pain. I figured it was a sleep seizure I needed to sleep off.
This type of thing was way worse than any hangover I'd ever had.
But ERs are chaotic. I've suspected that the chaos, the noise, lights, interactions, may have gotten me stuck somehow. That I've never given my brain the chance to "sleep it off", and that since then I have been stuck in some kind of subconscious nightmare-land. Nothing has been the same.
I keep running into these kindof pseudo-familiar situations that send my mind off into bizarre thinking. I've had a hard time knowing what is real, when things at times seem contrived.
But I can't keep my mind from dwelling on this situation at the ER.
It was horrible.
I remember a pain at some point that was blinding and so extraordinary I wanted to die. There were several doctors there at some point, there were brief interactions with staff I recall, and there is a persisting feeling that someone tried to hypnotize me or manipulate my brain. I vaguely recall they gave me morphine for the pain. I'm not even sure that's real anymore. I recall an incident where I was being restrained by a police officer, which I'm not even sure was real. I recall times of being put into strange rooms that couldn't have been hospital rooms, and strange interactions with doctors and staff.
Could these visual hallucinations be seizures? From morphine? The hospital records and my parents say we were there for about eight hours. I recall maybe 15 minutes of brief timespans.
At times I've had ideas earlier during this timeperiod post-ER that I might still be in a coma or something even, and that these pseudo-contrived familiarity interactions might actually be doctors and staff still interacting with my body, and that all of "this" is actually just in my head. Or that I was in a coma and that now it's actually a year later, but that people won't tell me so that I can just continue living.
Weird thing about that too is that I could swear I had some types of psychic visions of the future during this ER span. One of which involved capturing bin Laden on my birthday, which basically happened. Which also fueled the idea of my still being in some sort of suspended-state coma. Because I don't really believe in psychics, per se, like palm readers, tarot, yadda. But these things keep occurring.
And so I rationalize these (try to) as the deja vu type of auras. But also it makes me think back to the period during the ER when I seem to recall someone brainwashing, hypnotizing me, or attempting to.
The neurologist I had seen at the hospital is now inexplicably gone (I found while checking for my phenoytoin levels - note to self -->call them back again tomorrow<--- ... they said a new Neuro is on the way...)
This has even led me to wonder if she had gotten dismissed for being incompetent, and that my issue now is a result.
My neuro had also gotten me onto Keppra which I was on during this ER timeperiod. I have since weaned off of it.
Since the ER it's like a black void has occupied part of my brain.
Parts of it kindof reveal itself again at times, but it's still there.
I need to find a counsellor at this point, I know.
But are these types of experiences typical of seizures?
I may just be entirely ignorant still of what epilepsy IS, and if that's the case, I'm driving way too much.
or could this all be residual Keppra issues?
I've taken phenytoin (now 500mg a day) since my diagnosis. I think originally I began on 300mg a day, which was increased later.
psychic phenomenon, deja vu, weightless, encompassing major "goosebumps", pains, bruises, scratches (face usually)
these sound textbook
so textbook it seems like bullshit frankly
maybe I'm still in denial and just try to keep plugging along in my 'normal' life without acknowledging any need for changes
growing up and hearing of epilepsy I'd had the image of the stereotypical physical "shaking" thing- images I'd probably gotten from bad acting on tv shows, you know...
I had no idea
I'm scared and feel alone, these phenomena and experiences do not help certainly, absolutely
maybe with experiences this bad I'm in denial because of the absurdity
this forum has really been my only counsellor and reference point so far.
thanks to all in advance
One question I have is (diagnosed at age 38, now 41) could I have had a seizure disorder for quite a while? throughout my life?
since being diagnosed I've tried to pay attention to what might be seizure related issues (but I'll also add I'm a recovering alcoholic, 8 yrs, so waking up in pain was a regularity, and throughout the day, nausea, feeling "out there" etc, even though I'd just drink at night) but I'm not quite sure at this point what "normal" is.
Do seizures get more prevalent when the tonic-clonic threshold is breached? I've heard this is the case. And so when I have obvious bruises, scrapes, etc, and I don't know WHY, that now seems to be a pretty good indicator.
When I can associate some sensation I'm feeling that is an extreme nature, that I can now affiliate with something I've read online, or heard mentioned from what brief interaction I've had with doctors, I now try to affiliate that with an aura or a simple partial seizure, or something(?).
I also smoke a bit of weed. But these sensations aren't like getting high, because if they were, I wouldn't want to get high.
But since my last trip to the ER Dec.2010 I've had a hard time coping with reality, frankly. I try to just talk myself down through these issues by saying this is just part of epilepsy. The recollections of brief periods of interaction with people (during what I guess was a post-ictal, partial seizure, simple, "psychotic episode" (from all I heard from the hospital)) have persisted as an imposition in my life. Is that typical of seizures? of "psychotic episode"s?
It seems I might recognize people from the hospital (I'd never been to that ER before), or maybe just people that resemble people from the ER, and it'll send me into strange thought processes that I did not experience prior to that seizure episode at the ER. I despise that trip to the ER. I woke up at home in unbelievable pain, calls and a visit from my mom finally spurred an ambulance trip. I was barely able to walk from a massive migraine and body pain. I figured it was a sleep seizure I needed to sleep off.
This type of thing was way worse than any hangover I'd ever had.
But ERs are chaotic. I've suspected that the chaos, the noise, lights, interactions, may have gotten me stuck somehow. That I've never given my brain the chance to "sleep it off", and that since then I have been stuck in some kind of subconscious nightmare-land. Nothing has been the same.
I keep running into these kindof pseudo-familiar situations that send my mind off into bizarre thinking. I've had a hard time knowing what is real, when things at times seem contrived.
But I can't keep my mind from dwelling on this situation at the ER.
It was horrible.
I remember a pain at some point that was blinding and so extraordinary I wanted to die. There were several doctors there at some point, there were brief interactions with staff I recall, and there is a persisting feeling that someone tried to hypnotize me or manipulate my brain. I vaguely recall they gave me morphine for the pain. I'm not even sure that's real anymore. I recall an incident where I was being restrained by a police officer, which I'm not even sure was real. I recall times of being put into strange rooms that couldn't have been hospital rooms, and strange interactions with doctors and staff.
Could these visual hallucinations be seizures? From morphine? The hospital records and my parents say we were there for about eight hours. I recall maybe 15 minutes of brief timespans.
At times I've had ideas earlier during this timeperiod post-ER that I might still be in a coma or something even, and that these pseudo-contrived familiarity interactions might actually be doctors and staff still interacting with my body, and that all of "this" is actually just in my head. Or that I was in a coma and that now it's actually a year later, but that people won't tell me so that I can just continue living.
Weird thing about that too is that I could swear I had some types of psychic visions of the future during this ER span. One of which involved capturing bin Laden on my birthday, which basically happened. Which also fueled the idea of my still being in some sort of suspended-state coma. Because I don't really believe in psychics, per se, like palm readers, tarot, yadda. But these things keep occurring.
And so I rationalize these (try to) as the deja vu type of auras. But also it makes me think back to the period during the ER when I seem to recall someone brainwashing, hypnotizing me, or attempting to.
The neurologist I had seen at the hospital is now inexplicably gone (I found while checking for my phenoytoin levels - note to self -->call them back again tomorrow<--- ... they said a new Neuro is on the way...)
This has even led me to wonder if she had gotten dismissed for being incompetent, and that my issue now is a result.
My neuro had also gotten me onto Keppra which I was on during this ER timeperiod. I have since weaned off of it.
Since the ER it's like a black void has occupied part of my brain.
Parts of it kindof reveal itself again at times, but it's still there.
I need to find a counsellor at this point, I know.
But are these types of experiences typical of seizures?
I may just be entirely ignorant still of what epilepsy IS, and if that's the case, I'm driving way too much.
or could this all be residual Keppra issues?
I've taken phenytoin (now 500mg a day) since my diagnosis. I think originally I began on 300mg a day, which was increased later.
psychic phenomenon, deja vu, weightless, encompassing major "goosebumps", pains, bruises, scratches (face usually)
these sound textbook
so textbook it seems like bullshit frankly
maybe I'm still in denial and just try to keep plugging along in my 'normal' life without acknowledging any need for changes
growing up and hearing of epilepsy I'd had the image of the stereotypical physical "shaking" thing- images I'd probably gotten from bad acting on tv shows, you know...
I had no idea
I'm scared and feel alone, these phenomena and experiences do not help certainly, absolutely
maybe with experiences this bad I'm in denial because of the absurdity
this forum has really been my only counsellor and reference point so far.
thanks to all in advance
