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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

They think it might be

Submitted by just_joe on Wed, 2016-11-23 - 11:46
They think it might be epilepsy as what I describe when it happens sounds like epilepsy to them.  <<<In a seizure the heart rate can go weird. Increasing the rate or decreasing it and yes at time start and stop it. If this was happening to me and I knew I had had seizures before I would ask my doctor for a referal to a neurologist that specializes in epilepsy. Especially is the cardio said what he did. Have him reefer you because he knows what has been happening or knows the tests you have had. But yes my doctors know all the differrent medication I take and all the different over the counter medis I use. THe reason for that is one medication can counter another.What your posted could be in  several different seizures.Each persons triggers can and are different. Just as their seizures are. In the learn section they tell you about the different triggers. But like I posted each persons is different. The main ones are stress and lack of sleep. I have no problem with stress. Most of my life I have gottten about 5 hours of sleep a night.I've had too many seizures to count and I'm trying to get to the bottom of them.  <<< one seizure may be a one time thing. But knowingyou had seizures years ago and have had them and counted them can tell you that you have a seizure disorder which is what epilepsy is. Get the cardiologist to refer you to a neurologist that specializes in epilepsy and you might get to the bottom of this faster.I hope this helps and you get the assistance you needJoe

Thank you for your input. I

Submitted by lchandler1985 on Wed, 2016-11-23 - 18:43
Thank you for your input. I don't sleep well at all and even if I get 8-9 hours, I'm always tired no matter what. I try to nap when I can to catch up which helps a little. At the moment I am constantly dizzy and having the "feelings" I'm going to pass out nearly all day everyday. :-( What struck me as odd was the cardiologist said that if it was heart related, then there wouldn't be any warning like I was describing. Just drop.

Thank you for your input. I

Submitted by lchandler1985 on Wed, 2016-11-23 - 18:44
Thank you for your input. I don't sleep well at all and even if I get 8-9 hours, I'm always tired no matter what. I try to nap when I can to catch up which helps a little. At the moment I am constantly dizzy and having the "feelings" I'm going to pass out nearly all day everyday. :-( What struck me as odd was the cardiologist said that if it was heart related, then there wouldn't be any warning like I was describing. Just drop.

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