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" you won't know your having a seizure"
Mon, 03/06/2017 - 09:36That is what the doctors told me when I was first diagnosed with epilepsy at 18- I'm 26 now. I want to share my story because I feel I have a very unique case and wonder if anyone can relate.
There are three things to know about my epilepsy. 1. They ( grand mal seizures) are nocturnal only happening when I'm "asleep". 2. I'm completely conscious during the first few moments of the seizure and can feel my body bend and muscle spasms ( it's terrifying ). 3. I can stop myself from having a seizure.. well my husband can. So let's clarify- my seizures happen at night while I'm asleep, I'm completely awake during the first few moments of the seizure and 90% of the time my husband can stop my seizures. Told ya I had an interesting case.
I've read about people having a "tell" or knowing when they are about to have a seizure. Seeing colors smelling a certain scent etc. my seizure is set off by none other than a little foot cramp. I'll be sleeping and if I have any type of " jolts" or twitching of any kind- bam! Foot cramp. Here's how it goes- I wake my husband up and he grabs my right foot then bends my toes back to prevent the complete curling of them. My foot "pumps" a few times and then the cramp goes away which in turn, prevents my seizures. The times my husband isn't around to fix the cramp or didn't get to it in time is when my right foot cramps toes curl then I feel the seizure and it's absolutely the scariest thing in the world to feel. So when the doctors say you can't feel a seizure or you won't know when it's happening and the occasional it's impossible to stop a seizure, I say I kindly disagree.
Comments
You may not be having grand
Submitted by just_joe on Mon, 2017-03-06 - 19:16
You may not be having grand mal seizures. Generally in one of those the person is UNCONCIOUS.. However there are seizures that are convulsive that can mirror a grand mal. Most people do not know about them. Now you state that it all starts with your foot cramping.... If that is the case then you may know it will happen and your husband stops it. When I was a teen my convulsive seizures all started with a weird feeling in my right hand. If it stopped there it was fine and today would be considered a sim[le partial or even an absence seizure. It my hand started rising up but stopped it too would land in simple partial seizures or one of them. However it my hand ever got shoulder high I wound up on the floor in a convulsion and knew what was happening and who was around me. So yes I battled to keep my arm and hand from getting shoulder high. I think I stopped it some times but most of the times it started rising I had a bad seizure. Doc and the others before him knew I could have them. Back in the 1960's they were Focal Motor seizures. My diagnosis was Grand Mal. Petite Mal and Focal Motor epilepsy
I'm 38 & was diagnosed w/
Submitted by jill1129 on Fri, 2017-03-10 - 11:51
I'm 38 & was diagnosed w/ epilepsy (inherited) when I was 15. My 1st was an absence seizure while my dad (a doctor who - thank God - knew what to do, so didn't panic) was driving me to school. Over time, my seizures developed from petit mals to grand mals (those are the ones I usually have). A few (very few) times I have been conscious & have simply not been able to move....strange that I was able to think - evil thoughts, too. I remember (remember!) thinking I'd tell the person w/ me after that I was pulling a prank; faking. I'd NEVER do a thing like that! Once, a few months ago, I had a grand mal where I could (it was terrifying!) feel every single jerk I made as I heavily convulsed & every single one of the "rrrrrggghrrrrr" noises I'm told I make when I seize. I also - for the first time (I had the flu) vomited. It was a good thing I WAS conscious, because I at least had the state of mind to turn my head slightly so I didn't choke on my own puke. Like you, I've also learned out to prevent a seizure, although it's in a different way & I can't always do it. When I have an 'aura' (as I call it) - mine are seeing the room doing sort of jumping around - I lay on my back on a hard floor, draw my knees up sort of relaxed-like, touch cold surfaces w/ my hands/arms, count out loud backwards from 100 (hearing my own voice keeps me grounded, like touching the cold surfaces), & close my eyes to block out the sight of the jumping room. It's not until I reach the #1 that I open my eyes again. If the room is still 'jumping,' I start counting again.
Disagree too. A lot of people
Submitted by mereloaded on Mon, 2017-03-06 - 17:55
Disagree too. A lot of people with certain types of epilepsy know what is going on and some have things they can do stop a full blown attack, like counting or thinking about something else, or forcing their bodies "not to go there". I have seen my son on ocassion fighting so hard not to go into one, and it is when he can't fight it any longer when he goes into one. I'm pretty sure he has stopped himself and fought the impulses. I would only take the word of a doctor that actually has epilepsy she n the matter.