Hi, first night here
- Thread starter Skywalker
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It does appear to be exactly what I have been looking for. To be among people who understand when you talk and do not look kinda strange when you mention it.
I have had it for quite some time and had 2 operations which changed nothing and it has never been under total control despite many changes in medication.
But well, I suppose worse things can happen in life.
Having nocturnal epilepsy (and me walking around in post ictal phase) has caused some very, very strange and sometimes funny outcomes.
Like.....once I was at a hotel on my own and there it happens......when I "wake up" standing in the bar in my nighties (well, then it was not funny at all but maybe in retrospect???)
I have had it for quite some time and had 2 operations which changed nothing and it has never been under total control despite many changes in medication.
But well, I suppose worse things can happen in life.
Having nocturnal epilepsy (and me walking around in post ictal phase) has caused some very, very strange and sometimes funny outcomes.
Like.....once I was at a hotel on my own and there it happens......when I "wake up" standing in the bar in my nighties (well, then it was not funny at all but maybe in retrospect???)
HI Skywalker,
Welcome to CWE! Everyone here has been a great friend and help to me and I have had seizures for 45yrs. and just like you I've had 2 surgeries to help reduce my seizures along with trying over 10 different seizure meds. I have absence, complex partial and simple partial seizures and when I have a complex partial seizure I will often wander around but I don't realize it until the seizure is over and I find myself in a different room so I can relate to how you have felt.
After having a DNA test and finding out I was drug resistant my Dr. put me on the CBD oil (medical marijuana) and I am amazed at how that has reduced my seizures. Last yr. I had the least amount of seizures in the 45 yrs. I've had epilepsy. I wish you only the best of luck and May God Bless You!
Sue
Welcome to CWE! Everyone here has been a great friend and help to me and I have had seizures for 45yrs. and just like you I've had 2 surgeries to help reduce my seizures along with trying over 10 different seizure meds. I have absence, complex partial and simple partial seizures and when I have a complex partial seizure I will often wander around but I don't realize it until the seizure is over and I find myself in a different room so I can relate to how you have felt.
After having a DNA test and finding out I was drug resistant my Dr. put me on the CBD oil (medical marijuana) and I am amazed at how that has reduced my seizures. Last yr. I had the least amount of seizures in the 45 yrs. I've had epilepsy. I wish you only the best of luck and May God Bless You!
Sue
Well as I said, I suppose worse things can happen in life. It is a very very crappy thing to have to live with specifically as they can't get it under control. I have seen a guy here in London and that's all he does...been on many different medications but especially when I get stressed things get worse.
And it does appear I get a little violent in my post ictal phase when I walk around.
But I suppose there are worse things that can happen to you.
And it does appear I get a little violent in my post ictal phase when I walk around.
But I suppose there are worse things that can happen to you.
seizuregirl
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Hi Skywalker!
I have complex-partial's and tonic-clonics, when I was still working and had 1 at work, I would find myself in a different part of the store confused as to what happened, before and after being diagnosed. The last time, I came out of one sitting on the floor in a puddle. I had thought that I had dropped a bottle of paint at the start of it and sat down in it post-itcal, but I after looking, it wasn't paint. (needless to say, but I quit!)
I've only had 1 surgery, but like you, it did nothing for me.
I have complex-partial's and tonic-clonics, when I was still working and had 1 at work, I would find myself in a different part of the store confused as to what happened, before and after being diagnosed. The last time, I came out of one sitting on the floor in a puddle. I had thought that I had dropped a bottle of paint at the start of it and sat down in it post-itcal, but I after looking, it wasn't paint. (needless to say, but I quit!)
I've only had 1 surgery, but like you, it did nothing for me.
Hello Skywalker. I know exactly how you feel. Having epilepsy really stinks! I've had it since childhood. My E (the Simple Partials) is due to scar tissue in my brain. I was a forceps delivery.
I complained of weird feelings in my head which nobody could understand until one was captured on an EEG done after I suddenly had 3 or 4 Tonic Clonics when I was 14 (none since). About 17 years ago, the Complex Partials began, making life MUCH tougher. I've burned myself many times (2nd & 3rd degree) during them.
I've been on every AED available. I currently take Topamax and Vimpat--400mg/day of each, along with 1mg folic acid, & STILL get breakthrough Complex Partials--sometimes within hours of taking my meds!
I complained of weird feelings in my head which nobody could understand until one was captured on an EEG done after I suddenly had 3 or 4 Tonic Clonics when I was 14 (none since). About 17 years ago, the Complex Partials began, making life MUCH tougher. I've burned myself many times (2nd & 3rd degree) during them.
I've been on every AED available. I currently take Topamax and Vimpat--400mg/day of each, along with 1mg folic acid, & STILL get breakthrough Complex Partials--sometimes within hours of taking my meds!