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Epilepsy or not? Help!

Tue, 11/22/2016 - 17:24
So I've had seizures for a number of years now. I passed out a lot as a kid with a few of them seizures. They went away but when I was around 18, I had another seizure and since then (I'm 31 now) I have had a few seizures a year, becoming more regular (4 so far this year). I've always been told by doctors "Nothing to worry about, just try not to hit your head"! Not helpful. I'm pushing them now though as they are causing me great anxiety. I get "that feeling" I'm about to go very regularly. Some medications aggravate them further. I am currently seeing a cardiologist because I was certain it was a heart thing due to the rapid resting heart rate. They think it might be epilepsy as what I describe when it happens sounds like epilepsy to them. Triggers include pain, excitement, thinking of anything to do with blood or simply just watching tv relaxing. Although now I suspect food plays a roll as I feel weird after eating, especially bread. The fact that I get "warnings" beforehand, convulsions and incontinance during the seizure is not compliant with heart problems. The feeling I get before a seizure is a great anxiety followed by a heat rising over my shoulders and up my neck. I loose hearing, I can almost smell blood and I panic before passing out. People watching say I go rigid with some limb jerking, eyes rolled back and grunting. When I'm "out" I feel as though I am in a very fast-paced nightmare. I don't know where I am and I'm spinning with flashing lights. It's very confusing and when I finally come around and can hear again slowly; I'm usually sick or nauseous and have even thrown up during a seizure before. I'm down for the count for a few hours after that and exhausted for the rest of the day. I thought I had Reflex Anoxic Seizures but now I'm not so sure. My nan also has epilepsy. The reason I thought it was a heart thing is because I have a heart rate monitor and had a seizure whilst wearing it once. I managed to steer myself out of it right before I would normally pass out and upon watching the monitor throughout, I witnessed my heart stop and start again. But the cardiologists are adamant it's not a heart problem. I will be fitted with a monitor implant for 2 years to test this. So time will tell. I would love someone else's take on my experiences, I've had too many seizures to count and I'm trying to get to the bottom of them. Thank you and apologies for the essay!

Comments

Finding it hard to cope right

Submitted by lchandler1985 on Wed, 2016-11-23 - 18:44
Finding it hard to cope right now. I think I will go back to the docs and ask him to refer me to neurologist as well

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