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Simple Partial / TLE
Sun, 07/29/2007 - 23:12I feel like a rare breed. Most of my life I have not been on meds and have managed wonderfully whereas most people with E would gasp at the thought of not being on meds. Perhaps the biggest difference is that my seizures are partial and I remain conscious the entire time. Secondly, I typically have them only one day per month and have many during the day and night of that 24 hr timeframe.
I'm wondering if anyone else has similar seizures to mine:
I feel it coming on, that aura feeling. In a nutshell I would describe my seizure as a progressive feeling of complete information overload. When I have them I want to get away from people and be in a quiet room alone while it passes. The intensity increases to a peak and then slowly subsides until its over which is about a minute or two.
Althought I remain conscious the entire time, I have no short term memory... so if I'm trying to remember something that isn't deeeeeply embedded in my long term memory I will not be able to recollect it during my seizure. So, although I know my name, if you asked me what song played on the radio 1 min ago... I won't have a clue. I also have hot flashes. Oftentimes, I have a feeling of deja vu and would bet my life that the events around me have happened before. I lose my appetite if I'm eating at that time. I am completely overwhelmed with fear. I wholeheartedly have a feeling that someone behind is going to kill/harm me. Of course now I know it's a hallucination so I will either position myself so that I back to a wall or something that makes me feel safe. Afterwards I get a bad headache and feel very sleepy. (When I was a child, I would hallucinate a mucus smell - I don't experience that anymore)
Although I can hear what people say and may be able to comprehend little bits and pieces its such an information overload moment that its practically impossible for me to truly digest what someone is saying and give them a quality response. So, if I'm in a situation where I think I may have to respond to someone (who doesn't about my E), I will find my way out of the situation as soon as the seizure starts (excuse myself to the bathroom or something) until the seizure passes.
Anyone else have similar seizures?
I have been on meds twice in my life and both times I felt that the daily side effects were more annoying than my one-day-per-month-24-hours-of-ten-to-fifteen-seizures and chose to forego meds.
Anyone else living w/o meds?
Comments
Re: Re: Simple Partial / TLE
Submitted by DavidMcP on Wed, 2007-08-01 - 20:12
Hi there, yes I get something very similar, I had a brian tumor removed from my right temporal lobe and whatever the reasons (scar?), I am left with bouts of auras that range in intensity, no tonic clonic perhaps due to the tegretol and keppra I am on, my only tonic clonic happened while on a run Aug. 5, 2003 which led to the discovery of the tumor. Coming up on my four year anniversary!!!
I found the term presque vu (almost seen) to be a better description of the sensation vs. deja vu (already seen). The experience to me is like I am having memories of perhaps another life I lived, that I don't know about in normal life, and some kind of gate is opened allowing the memeories to leak through to me today. I don't know the memories clearly, but there is a strong, strong sense of understanding and if I could only figure it out the awakening would happen. The experience however nice sounding is also scary, bringing on unprovoked fear, dizzyish, tingling lips, bowel movement sensation.
It intellectually reminds me of a book I read "Many Lives, Many Masters," a true story, where a woman seeks help from a prominent Psychiatrist to help with her awful Panic Disorder(s), a panic disorder is something I actually experienced due to my tumor, prior to its discovery, three years of hell there. Through hypnosis the Doctor uncovers her fears are founded on past lives she lived where she died awful deaths: dronwing, burned alive, etc. Whether you believe that stuff or not, this is the sensation/connnection to me during a full on "spell."
"Presque vu means 'almost seen'. Not scientifically recognized, it is the sense that one is on the verge of a large mental breakthrough, almost seeing the absolute truth about something but not quite getting it."
Sorry for all the babble, but I too love to know that I am not alone on this rollercoaster
Cheers, be well and help somebody
David
Re: Simple Partial / TLE
Submitted by Gina Marie on Sun, 2007-08-05 - 13:34
I was diagnosed with TLE and simple partial seizures originally. Some of my symptoms were very similar to yours. Up until the diagnosis I was living med free and doing well seizure wise. Unfortunately, within a year my seizures went from nice simple ones to severe grand mals and complex partial ones effecting everything in my life. Medication for me is nolonger an option. For those of you who can manager without it, kudos:)
Re: Simple Partial / TLE
Submitted by K-Lynn on Sun, 2007-07-29 - 23:51
I have the same symptoms, but the only thing is that if i'm awake i pass out and go into a totally unconscious state and have a tonic clonic seizure. when i wake up ( regain consciousness or awake from sleep after a nocturnal) every where hurts. but mainly back and neck pains. how bad it hurts depends on how soon I'm rescued cuz my family has grown accustomed to them now cuz I've been having them for the past 3 yrs(I'm 18 now). One of them hold me up n start slappin my face and shaking my shoulders. it may sound a bit brutish but if they don't i would wake up with a bloody swollen mouth and tongue(plus i don't remember them waking me up or feel any pain b-cuz og the way they have to wake me up). when i wake up its as if I'm in m y own world. everything seems so strange then after a couple mins -hrs (depending on severity) i would regain my full senses. there is always a throbbing head ache any terrible dizziness when i try to stand. i usually don't remember anything directly before during or after, like if we have a convo when i come out of it, later in the day i would tell you that it never happened. but after the first 6 or so hrs that part wares of. I'm so glad i found this site. Its just great knowing that you could talk to others in a similar position. Lynn