Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
" 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.
I agree. Before I was
Submitted by Pam_58c62cd38ffe8 on Mon, 2017-03-13 - 01:38
I agree. Before I was diagnosed, I thought I was "spinning" due to allergies, watery eyes symptoms. Before I knew that it was a possible beginning of a seizure , I was able to stop them. I presumed it was my allergies acting up so I would think about something else and take a breath and distract myself. As you say "not to go there" was my strategy too. It usually worked. I was finally diagnosed at age 54. I had my first episode 10 years earlier. My fainting spells(every couple of years) were thought to be exhaustion, dehydration, hunger. stress...it was always explained away. It took forever to get a correct diagnosis. I finally got diagnosed when I had two bad episodes about a month apart. Sleep deprivation seems to be my trigger. You better believe I take a sleep aid every night!