Is ok...i don't mind at all.... yes my situation is a bit unique...even among other epileptics... Few have as much time in status as i do without permanent damage.... Fewer yet also have physically perfect brains.... I don't mind repeating shit either.... just didn't know if i was telling you shit you already read... many other epileptics are also afraid to live without pharmaceutical meds.... I can't live on them.... yet have been told by people who claim to care the the way i live is suicide.... my response....at least i am living my life....and not watching it on the tv....
I would like people who may read this that the surgery has changed my life for the better no matter what I say out here. It changed my life again for what I think is the better of me and my family. Take your time man I just see so many similarities in our experiences that I had so many responses to things you said. If there's one thing I have is time. The thing for me was I had E bestowed on me at 30 by a twist of fate. I had to grow into it, it became a part of me and then had part of it removed. That in itself is stunning to the psyche. After the surgery I had to accept that I would be going into my 3rd phase of life. You on the other hand grew up with it, it was a part of who you were, a kid would naturally think those feelings were normal. Moving into adulthood it was part of your being. I can only imagine the feelings you had post surgery. Mad respect from me to you man. I know man, for me it is like I can hear the voice, it seems like I am listening to the uninitiated but I am somewhere else on some other plain. It's been like that for me since my first seizure. Thinking "I've never felt like this in my life" Then the taste of old, aged, dirty coins. My daughter says "oh no mummy I think daddy is tasting pennies again" almost every time I start a small auara. Amazing that she can sense it but she has grown up with it and lives with it daily. Same thing happened to me a while back when my daughter was 2. I swear she was sitting in my man cave playing a game with me then I turned around for a second and pooof she was gone. I started searching the house frantically for herI was looking under everything, in closets, cupboards, which my wife heard and awoke. She asked me what was I doing and I told her I was looking for the kid. We were just playing and now she's gone. She told me that we had put her to bed hours ago, to which I responded "fuck you! stop playing with my head!!! Why would we put her to bed at 3pm in the day!" The wife told me to look out the window and look at the moon but all I saw was the sun and a glistening rainbow. I told her its a beautiful day, she said "its a rainy night!" dumbstruck I collapsed in tears and went up to my daughters room with my wife and she was there peacefully sleeping and I looked out the window and it was night and the moon was blindingly huge in my eyes. I get the same from my wife saying if I don't take my pills I am suicidal. She hates the effects of them she hates the E yet she wants me to take them. It's a catch -22. Recently she threatened to use my Power of Attorney to force me into an institution in order to force me to take my meds. I tell her I just want to be me again, not just the hazed and phased person the meds make me. I'm not afraid to live without my meds I only take my pills for the wife and kid to hopefully not put them through the "ictals" anymore. If it was just me I would be skipping so many doses just to feel like "me" again. It’s not healthy at all but I always ask myself “How can I live, when I’m already dead”? I have used the same terms as you saying "I want to live my life and not feel like I am just watching it on a screen" This is a poster I have on my wall. Some consider it dark. My wife finally understands it but still hates it.
I haven't taken the pills in years now.... You said "never felt like this in my life" For me that first thought was is always the opposite.... "I know exactly what this is...this feeling....i know this...." What many call "aura" is actually a simple partial seizure in med terms... For those who don't already know..this is seizure activity which only involves a portion of the brain.... For many this activity then generalizes and involves the entire brain...(grand mal) or it can become more intense in the same limited area.... becoming complex partial.... the main difference for us between simple and complex involves memory.... simple you lose no memory.... complex you lose all memory and tend to act out of character.... A year ago a friend found me... Soaking wet... In a field.... Sweeping the grass with a kitchen broom.... It can be an adventure! "But im still alive... My fingers feel... Gonna play on Till the final reels thru... And read the credits....from a different view.... Where's the lights turn them off my friend And the ghosts....we'll just let them in.... Cause in the dark....its easier to see" "I been grasping at rainbows Hanging on till the end But the rain is so real lord.... and the rainbows pretend.... And the rainbows pretend..."
Damn. Hope you're doing well, brother. At least you're still breathing. Could be good or bad, depending on how you look at it, depending on which you is looking at this present.
I couldn't imagine losing days, weeks, months. I would imagine it puts you in the present a lot more. What's more difficult, the days leading up or the days that follow?
The days that follow.... i rarely have any warning before at all..... in that post-ictal state.... i usually need some time to recover.... Now if i am still having complex partials.... and blacked out..... This last time a friend took my boots so i had to stay home and rest..... Otherwise who knows where i might end up.....
I'm with ya man, happened to me too. Wife was late for work watching and waiting for it to end. Thankfully it was just a bleeding tongue and nothing missing from it for me. Past week and a half is like a fading dream for me. Thank goodness for the grass..... at least it helps relax the muscles a bit and reduces the pain a bit from the seizures. I'm with you my kindred spirit... Hope all is well man or at least feeling a bit better. Peace to you
I am doing as well as i do..... feeling better today for sure.... It is nice to know someone on a similar path my friend.... Not something i have known often in this life..... you are right....fading dream is much what it is like.....
Mungo my friend..... it has been an adventure... somedays idfk how i made it this far.... Im out here.... watching the seasons change around me..... In that in between.... Everything trying like all hell to bloom...... trying like all hell to reach out far enough..... to earn a spot in next year..more times on my face this year..... Still in the highest category for this shit to just kill me..... for no reason.... just cause.... go in status one day and not come back.... I am not looking for the door.... Not trying to find my way out.... yet i know it is always sitting just near by.... Shit there may have been times I've treated myself better...taken better care.... Yet i am to busy being here.... to worry bout what comes.... Too much already gone to worry bout losing more.... No I'll just keep on waking up....every now and then.... wondering where the fuck i am....and who i may have been.... Still got my tonsiles adnoids....wisdom teeth.... appendix... all that shit.... yet the fucks cut out half my brain.... and wouldn't even let me keep it.... id still have it in a dish.... i tried like hell to get it.... i would talk to it about my day... let it in on what it misse
3/24/12 There have been times in my life when i didnt speak to anyone... Long times.... There have been many time i have spoken and not been heard.... Some of my best speaches have been delivered to empty rooms where only the shadows keep me company.... Today i paced in large circles in the parking lot of a walmart supercenter.... As i did so i spoke aloud to the wind as it comforted me...i spoke to it of all the people who think they know me.... All the people who want a piece..I spoke aloud to the wind all the things i dont say to these fuckin people...... All the thoughts i keep inside.... .I spoke of dancing on their bones even until only dust remains... I cant share these thoughts with anyone..... They all have there own agendas....... I am just a fool lost in the rain....trying to stay that way.... i dont care about their world.....i want no part of it...... People who know nothing about me..... claim to know me better then i know myself just because they have glimpsed the mayhem i am capable of when i am pushed beyond my limit..... they do not know me at all..... -i was not having a good day....
if i havent told you this already..... try badkittys recipe..... on the days i know its coming ...a spoonful of that coconutcanna oil..usually does me just right...of coarse i dont often know its coming just sometimes i can tell i am not feeling right...like things are all shifted slightly out of place.... all the feelings in just the wrong spot.... anyway...her oil really helps in post ictal state as well......
hey man wish u the best things like tht can turn ur life upside down but u have to move forward and do what is right to u
thanks!!!! shit can be a mess sometimes...but i do make the most i can out of it! turn life upside down.......shit ...close to nothing from my life before diagnosis is still a part of my life now..... a few straggling reminders of who i once was..... a life long gone from now....
all depends..... sometimes i sleep a few hrs and am justa bit off for a few days...... sometimes it takes a few weeks to really get my head back together....those times i often have another cluster of seizures first.... without the eeg there is no real knowing... but i am relitivly sure that during those times i am having tons of "subclinical" seizures.....if not in status with them.....