New to forum; Want to better understand seizures

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LovelyGoldfish

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Hi all. I was diagnosed with complex partial seizures roughly 2.5 years ago (always had a clean EEG, though!) and I've been having a hard time understanding what I'm going through and to be honest I've been pretty bummed out that I don't have anyone in my life who "gets" what I'm going through. Not that I "get" what I'm going through either, lol.

I figured it might be helpful to join this forum so that I could find other people who I could relate to and who might be able to give some advice as to how to deal with seizure-related things in real life. I'm pretty lucky as my seizures are fairly well-controlled and rather infrequent. It still feels like a stab in the gut when I do have one, though. To be honest, half the time I don't know whether or not I'm having one and I feel confused about what I experience. I kind of just want to know I'm not alone.

Anyway, that's more or less my introduction. I'm excited to get to know you all!
 
Welcome. I've only been around here a little while but the first thing I'm realizing is that no two cases of epilepsy are exactly the same. Doesn't it feel great to be unique?

The folks around here are caring and very knowledgable. Ask away.
How old are you? Mine started when I was 22. I understand that feeling like the rug just got pulled out from under your life. Knowledge is the way to get your feet back under you again.

This is a place where, even if their seizures are not exactly like yours, everyone still "gets it".
 
Hi LovelyGoldfish, welcome to CWE!

I'm glad you found us. The members are terrific and can offer empathy that you won't necessarily get from your friends plus anecdotal advice that you might not get from your neuro. Please feel free to explore the forums here and post as the mood strikes.

Best,
Nakamova
 
Thanks! I'm 23. I was diagnosed when I was 21, although I suspect that I had seizures earlier than that (without knowing at the time what it was).
 
Hi Goldfish. Welcome. Like you, many people have had epilepsy for a long time before discovering it. Many times EEGs will be normal. You'll see that when you look through some of the old threads. :) Like Aloha said, everyone's seizures are different, but we can relate to each other.

Welcome
 
The only way to "get" it is to have it and i have it, so i get it. To me it's more like a religious moment. The few grand mals i have had are like truly religious moments, lights out, it's like a death in a way. Geez that sounds so negative.


:piano: :pop:
 
I've gotten a ton of help and information from this website.

When someone without epilepsy asks you what it's like to have epilepsy or have a seizure you might try to describe it but they don't understand, people on here do. If you're having a problem related to epilepsy and try to talk about it to a person without epilepsy they just doing get it. Almost always on here someone will know what you are trying to describe with in one sentence.

People may want to know why you can't remember things - it just happened yesterday! They don't know that it's not because you aren't trying to remember it, it's related to the fact that you have epilepsy.

A person might be mad a you because you sleep all the time, start acting in a different way, gain a lot of weight, loose a lot of weight and many other things. They don't realize that much of this can be related to the medicine you are taking and it's not because you want to be doing it.

Ask away on here and give advice too!
 
Edit: Sorry, I posted this before I saw Valerie's reply

I've only had a grand mal once and I can remember so little of it. But I definitely feel that I've had partials that have an almost religious quality to them. For me it's almost like I'm being "reborn," though. I've fallen on ice and lost consciousness, too, which I can remember better, but I didn't have a seizure when it happened. I have to admit, I'm definitely less afraid of death than I used to be, because it really is kind of like death in a way. (Now I'm being morbid!)

I often have trouble describing my experience and one of the reasons I'm here is to see if I can find other people who've experienced some of the same things and to see if other people might be able to help me put to words what I've experienced. Like I see all this talk about deja vu and jamais vu on the internet, but I feel like for me it's deja vu and jamais vu mashed together- it's just so hard to describe!

And whenever I do try to describe it, people just look at me like I'm crazy...
 
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Don't worry about posting something before you see that someone has already answered you're question. I do it all the time!

I have those feelings where something has already happened. I've been sitting in the living room before looking around thinking that the couch and tv are in the wrong places but I know they are where they should be too. I've also had them mixed together. People usually consider those 'simple partial seizures'. You don't black out during them you just don't feel right.

When you fell it's possible you had a 'simple partial seizure'. During those you loose conscious. Some people may black out for a few seconds and others for a few minutes.

The time you fell, and many people will fall when they have a seizure, could have been a complex partial that only lasted a few seconds which is why you remember more of what happened. Mine usually last a few minutes and I don't remember anything that went on during it.

The only times I've fallen during a seizure were when I've been taking a shower. I think I more or less lost my footing on the wet floor. Normally when I have a complex partial I'll just stay in one place, sit on the floor or walk around not knowing what I'm doing.
 
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I've been trying to figure out the difference between simple and complex seizures. My neuro says that I have complex partials but I'm pretty sure that I've also had a bunch of simple partials too.

My complex partials sound like yours. Are you supposed to remember losing consciousness? Cause as far as I'm aware I don't lose consciousness, but sometimes I'll find myself just walking about (or sitting/staring) and not really knowing what I'm doing. I'm also curious as to if you or anyone else has had unusual arm, hand, or head movements (or postures?) when (or before/after) this happens.

The fall on ice happened when I was a teenager before I was diagnosed. For what it's worth, my friend said that I was "curled up and writhing like a bug." So, no convulsions, but it sounds like something might have been going on.

Anyway, I've only heard of simple partial seizures and complex partials seizures. Would my seizures fit into the third category of simple complex seizures?
 
Complex implies impaired awareness. Check out this webmd link- it describes the partial types: simple (4 main types), complex (impaired awareness), and partials with a secondary generalised seizure (of which there are 6 main types described on the previous page of that link).
 
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By the way, Hi and welcome to CWE!

Great name as well :)

I think valeriedl just made a quick typo, judging from the context of her post, and the fact it's been edited now, so sorry- don't think there is a simple complex, it's one or the other or followed by a secondary I think :(

It is possible you're having simple seizures and complex ones - it's quite common to have both, or even all 3 and follow with a generalised one...
 
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First off I want to let you know I did mess up while I was typing. I had 'simple complex seizure' typed in but I meant 'simple partial seizure'. I changed it on my post too. So you replied to as a 'simple complex partial' should have been 'simple partial'. I'm really sorry about that.

During my complex partials I always loose consciousness and I don't know that I've had one unless there is someone there to see it happen. A good bit of the time I will just stare and not do anything. My husband said I like to pick things up and play with them or I will get up and walk around. I may talk too but it's not actual 'words' that are coming out of my mouth.

There are times when I do know that I've probably had one. After a complex partial I almost have a migraine, so if I've got one then I think I've probably had a seizure.

Other times I'll find something wrong in the house that I've done. Once I sent text messages, just letters not actual words, to someone. Another time I loaded the dishwasher. I had all the silverware perfectly arranged on the drawers instead of putting them in the places they should be.

Just the other morning I think I had one. I always get up at 7, take my meds, feed the cats then get back in bed and sleep for a few more hours. When I woke up later in the morning I was in bed but I saw that my robe and slippers were in the living room. I had taken my meds and fed the cats so I must have had the seizure right after that.
 
Thanks! I think I do have simple partial seizures. I've been diagnosed with complex partial seizures, but I haven't completely figured out what makes them complex partials. My head will jerk to the right and my right arm will jerk or like tremor/shake for a second. Although the motor symptoms still happen occasionally (not often, thank goodness!) the deja vu/jamais vu symptoms almost completely disappeared when I started taking trileptal. Is it common to have both motor and psychological simple partials? Half the time I think I must just be crazy...

Speaking of crazy, has anyone had hallucinations? I had an auditory hallucination once a few days before my grand-mal. I then had one about a year later just randomly out of nowhere, even though I hadn't had a seizure in a long time and it was quite a while before I had another one.
 
I get auditory hallucinations just before a seizure happens. For me it is always telephones ringing. I have no idea why telephones.
 
That was hallucination I had a few days before my grand-mal! I have no idea why I heard the phone either. I was annoyed cause it woke me up and I was mad no one else answered it. Haha, I eventually figured out why no one was answering it though...
 
Although complex seizures are usually associated with motor symptoms, they don't have to be. It's just really the loss of awareness/conciousness that defines them as a complex partial.

And there's nothing that says you can't have different types of simple either, and most people that have partials can also have simple and complex seizures, as well as having focal partials followed by a generalised secondary seizure- depending on their type of E.

For me, I usually get a quick sensory simple partial (aura) of a ringing in my ears, and an 'electric feeling' followed by a tonic clonic, though these days I'm just as likely to have a complex partial.
 
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AlohaBird said:
I get auditory hallucinations just before a seizure happens. For me it is always telephones ringing. I have no idea why telephones.
Click to expand...

I also get auditory hallucinations, but mine occur before a TC and usually I hear someone whispering my name, but it gets louder.
 
Nocturnal Seizures

I think I'm in a small minority but WRFletcher made a post back in 2012 about seizures in his sleep that started in 2010 when he was 53. My seizures started at 52 and I've only had 3 seizures since they've began and all have been in my sleep. It seems that as little they know about epilepsy they know even less about nocturnal seizures.
 
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