Saying Hello

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
7
Reaction score
0
Points
0
Hi, I'm Annie...
I was diagnosed formally with epilepsy in October 2010. I've had symptoms going back to my childhood but didn't know it. Dejavu has been a persistent one in my life. I smell a burning smell that no one else can smell. So partial complex seizures. However, they combine with nocturnal tonic-clonic seizures. I've woke up with big bites on my tongue or the inside of my cheek bitten up like hamburger.
I also have trigeminal neuralgia which is very painful! I take gabapentin for it.
I have Chiari malformation 1. Which means that the lowest portion of my brain has been forced through the hole in the skull where the brainstem and spinalcord go. I had surgery in 2008 to decompress the brain so that the spinal fluid could circulate better. Before that surgery I was losing the ability to walk, type, my balance was basically gone, and I was in so much pain. I can feel my hands and feet now. but balance and I still don't get along.
I'm on my 4th med change for epilepsy. They are still not stopping the seizures. My last neurologist called it "intractable epilepsy". He ordered a monitored EEG, but I moved before I could get it.
So now I am waiting for my appointment with my new neurologist.
I've had three days of seizures. I feel like crap! My husband goes to work at 4:30 am and my stepdaughter has to get up at 6 am. My hubby called at 7:15 to see if I had gotten her off to school. I was so out of it! I asked who she was, then I asked what day it was. :paperbag: She missed the bus and got to stay home today since I can't drive.
I hate this!
So how long do you guys usually feel like crap after a seizure?
Annie
 
I know my daughter felt like crapola for a good 26 hours :( We got home from the hospital at 6am Sat morning. I washed her up and helped her get into bed. She was out till about 3pm. She got up and tried to eat something then went back to bed. She didnt get back up until 8:30am the next day. She was still sore but up for most of the day and seemed to be ok for the most part.
 
Depends on how long the seizure is or if I have clusters. If it's just a short one, I spring right back up (yay, ADHD!) but if I have like 12 or they cluster really bad then I either take about 1 - 5 hours to get back to it. Or in really bad cases, It takes me the whole day of sleeping it off.
 
annie,that really sucks mine i pretty much down for the day and i have done that when my nieces were stayin with me but my wife calls me when shes at work all the time and i have know idea what anybody or anything is.me im just starting realize maybe all the meds or times i hit my noggin on somethin
 
Welcome to the site Annie. I am so sorry that you are going through all of this. Hopefully you will find the right medication soon. I too have intractable epilepsy. I just had another eeg last week, but have not heard anything. My guess is that it came back "normal". I can feel pretty bad for a full 24 hours, and then into the next day.

Feel better soon!
 
It sounds like you're going through a tough time right now.
It's so scary when you are no longer in control of your own body.
My sister has nocturnal tonic-clonic seizures and she has had one in the morning and gone to work and talked to people but basically have had no memory from that whole day.
For me, if I have been clustering it takes me about 1/2 hr to an hour to feel functional again but everyone is different.
Stay strong and hang in there.
I hope your new neurologist can offer some additional help.
 
It takes a few hours to feel functional. Then it takes about 2-3 days before I am back to my version of normal.
 
Hi Annie, welcome to CWE!

My recovery rate varies quite a bit -- anywhere from a few hours to a few days. The longest recovery happened when I got dehydrated, so make sure you eat and drink properly as soon as you feel able to post-seizure.

Best,
Nakamova
 
I have never had anyone but you descibe the smell and the feeling that i have just before a seizure. People look at me like I'm crazy when i ask them do they smell something burning. Mine smells like burnt tar. I'mso glade i join this place i don't feel like i'm alone now.
 
Back
Top Bottom