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Progressively adding to my seizures

Sat, 05/20/2017 - 01:19
Hi! I need some help if someone could possibly read this and direct me. I had a severe TBI in 2005 after a really bad car accident, after that I started having seizures. They've never been able to control them but I always had an aura and my seizures ranged from petite to gran mal so the doctors just couldn't get a handle on them. The EEG's varied, as you know, 2 out of 4 read abnormal seizure activity but they never actually caught a seizure on an one. As the years have gone by my seizures have progressed. Now I have seizures that I don't quite know how to describe. I'm not mentally conscious when I have one but to others I look and act aware. However I'm not acting "like " myself. I'm aggressive and agitated. I'm not violent but I say things I'd never say if I was conscious. I never remember any of it. I've just been told what I'm telling you that's how I know it. It takes me almost a full day to recover from these, and that's not considering the sleeping time. I've fallen down staircases during these events, even though normally I know these places I'm at. I've been trying to track anything that could be causing this and the only thing is it seems to happen once a month around or close to my ovulation. I'm still experiencing the other type of seizures as well, I'm just tacking on more. I'm also experiencing a "current" type feeling, almost a constant state of underlying tremor, that runs through me almost continually. Sometimes it developes into a seizure and other times just makes it hard to write. Most of the time if it turns into a seizure it's just my upper body and head, but sometimes it becomes a full blown gran mal. I feel like others surely have to see me shaking all the time and it makes me feel anxious to be around people. I don't know what to even do about all this anymore. I can't control or stop it. It's overwhelming. Has anyone else gone through this or have some insight or guidance??? Please? I feel like I'm drowning.

Comments

The EEG's varied, as you know

Submitted by just_joe on Sat, 2017-05-20 - 07:44
The EEG's varied, as you know, 2 out of 4 read abnormal seizure activity but they never actually caught a seizure on an one.  Auras are basically seizures that can warn you that you may have a stronger seizure.  the doctors just couldn't get a handle on them. It takes working with your doctor and constantly asking questions about your seizures if you see an increase and yes asking about medications. A medication or dosage that works for one person may not for the next. If you research and see the type of seizure the medication was designed for is not the type of seizure you have. It does not mean the medication will not work on your seizures. It means that the medication was originally designed to treat that type of seizure. Testing is done to find out the other seizures the medication can control.As for your other seizures you can have several different types of seizures.Imagine wking up one morning. walking into your kitchen and seeing the newspaper on the table. A dirty skillet and dishes in the sink and your dog doesn't want to go outside. You then go outside and see your neighbor who asks about the breakfast you told them you were goingto fix when you were walking your dog a few hours ago. If you have petite mal and grande mal seizures then you can have any generalized seizure. Look up the different types of seizures.I had one aura but have had many seizures.. By working with my neurologists the different types and numbers have been reduced to a seizure that lasts a few seconds and I do know when I have them.As for your tracking them and your time of month... If you researched the section Women with epilepsy you would see posts about women that have their seizures during that tyime of month.

Thank you for taking the time

Submitted by srchtt3_58da2bca6d3e8 on Mon, 2017-06-12 - 12:12
Thank you for taking the time to reply, I appreciate it. I've been working with my doctor for over ten years now. Been on several different medications, some help for a while, some don't. Some I've stayed on and do provide a measure of help, I think. It's very frustrating that I'm just adding new types to my list of "check marks" if you will. And from what I'm gathering there's not a lot that works on the hormone inducing seizures either, other than to be aware and keep track. I'll be willing to try something if they have an idea, I'm going to see my dr Thursday. I'm just tired of my days spent doing this. I have several seizures a week. When I had my TBI I injured my head pretty good. So I'm always hopeful they'll find something that will work. But this site helps, I know I'm not alone in the search.

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