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heymisterrager

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I've heard from some people that they have never heard of anyone having seizures while conscious. I think that's silly though, there has to be other people who have them while awake and aware. It's an awful feeling and very embarrassing. Being able to hear yourself make noises, the feeling of suffocation, feeling your spasms and trying so hard to control them and feeling very weak afterwards. My biggest fear is having one around someone such as a friend or even my girlfriend. As dumb as it sounds I try to go off and hide when I feel the tingling (pre-warning feeling), I've never had a life threatening seizure. My worst one lasted about 4 minutes and my legs were paralyzed for a few minutes. I sometimes envy those who go unconscious but at least I know I'll never fall out of nowhere. Does anyone else have conscious seizures?
 
Hi heymisterrager,

Welcome to CWE! I've had many seizures where I'm conscious my Dr. calls the simple partial (aura) seizures. I often have them right before I have an absence or a complex partial seizure. Years ago my neuro taught me that the moment I start to feel a simple partial seizure start to tighten up the muscles in my body and make my hands into tight fists and this sometimes stops the seizures for me if I catch it in time, I've been doing this since the 1970's. You may want to give it a try if you are interested to see if it will stop the seizure. I wish you only the best of luck and May God Bless You!

Sue
 
I actually have my own little trick, see if it sounds like it would make sense to you. My sensation starts from the left side of my body and moves to the right. When its all done with the right side, the seizure ends. Basically if I put my hand over my left eye, or close my left eye, the sensation will sometimes go away.
 
Hi Heymisterranger,
I wonder if maybe your are photosensitive meaning certain colors will trigger seizures. I found out I was a few yrs. back when they did a special e.e.g. on me a flashed different color strobe lights one at a time. Florescent green, bright white and amber were the 3 colors that triggered seizures for me. I have sometimes turned my head and looked at a darker area and that will stop the seizure just like you do.
Wishing you well and May God Bless You,

Sue
 
Conscious Seizures

Heymisterrager,
Welcome to CWE! Ask any questions about E that you want! We will try to answer them, if we can.
I know that I have absence seizures and I have both the type where I lose consciousness and the type where I can comprehend what is around me. It definitely IS possible to have a seizure and NOT go unconscious.
I have also found out that if I feel an aura coming on, I can sometimes prevent the seizure if I focus as hard as I can on one thing and nothing else. I don't know if this keeps some connections in the brain hooked up or what it does, but it seems to work sometimes. I will do anything if it can halt a seizure! :agree:

ACsHuman
 
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heymisterrager,

I've had E for 35+ years now, including TC seizures + SP and CP seizures. I wouldn't wish a TC seizure on anyone, so to say your envious, count your blessing, bud! They can also be life threatening! I've been in the ER several time because I've gone STATUS. Not fun!!

I've also had many, many Cps in public and don't remember what I said or did, although I was still conscious. Sometimes they are embarrassing, but that is what it is. The thing to do is educate folks so they know what to do when they see it. Education IS the key!

What has reduced my seizures is the VNS. No meds, brain surgery or other "tricks" helped me. Also lack of sleep, stress, and alcohol/drugs can bring on seizures.

Read here for more info on SP/CP seizures:

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
http://www.epilepsy.com/learn/triggers-seizures
 
welcome to CWE.

hi mister heymisterrager,

A counscious seizure I have seizures were I'm semi consious focal seizures and I also have simple partial and complex partial and tonic clonic but I don't have auras.
I've been having seizures since 1961.
seizures can change at anytime I know mine do all the time.
 
Hi heymisterrager,
Welcome to CWE. I have simple partials where I am fully conscious.
 
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I have both....and feel the same way Cint does about tonics...count your blessings...they suck...I had three simple partials awhile back and watched my daughter even get on the school bus...go out the door...that's how focused I was...ill take those any day.
 
Hi heymisterrager,

I'm conscious when I have a complex partial. My state of consciousness is altered and I can't speak but I'm aware that I'm having a seizure. It can be embarrassing, but it's definitely not as bad as having a tonic-clonic b/c of the danger and after effects of a tonic-clonic. I bit my tongue so hard and tore it up so bad one time when I had a tonic-clonic that it was extremely painful and difficult to eat for about a month.

Sometimes I can stop a seizure from happening but it takes extreme focus and energy and even then the seizure can overpower me. The thing is if I stop a seizure it will usually keep coming back trying to happen and I'll be OK just let it happen and not fight it.
 
Porkette,

Did they have you close your eyes or keep them open or both when you've had EEGs with the flashing strobe lights and when did you have it done last? If my memory is correct, they had me keep my eyes open many years ago but nowadays they have me close my eyes to protect my eyes. It's not as big an effect with my eyes closed. It caused seizures years ago but not these days and I think it's because they had me close my eyes. The last time I had it done was about 2 years ago.
 
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Hi Music36,
I had this special e.e.g. done a long time ago before I had surgery in 1994. I had to keep my eyes open so the Dr. could find out what colors were triggering the seizures. I know after I had surgery I was no longer photosensitive which I am very pleased. Here's wishing you well and May God Bless You!

Sue
 
I mean, I am more fortunate that my e isn't as bad as others and can be controlled with medication. It's just I feel like at my age (18) I care more about what other people think and I'd rather not scare them. I could educate them but on the real, they'd probably be frightened or laugh at me. I pushed my girlfriend away from me once when I started to feel one coming on and went to the bathroom. That's just why I "envy" it. I know it's terrible to be unconscious and very dangerous. I just wish I couldn't actually feel he seizure or be aware of someone's reaction. Does that make sense?
 
Are you unable to breathe while seizing too? I'm not familiar with other people's epilepsy, I've only met 2 others in my life that have it. How does it feel? It sucks doesn't it.
 
Welcome heymisterrager! These people have an amazing amount of info, glad I found them all in one spot.
 
Oh god yes .depending if I got your meaning right.i had most odd thing the other night I was conscious and aware my leg was jerking then I remember nothing.so I think some people are aware ..When my e was at its worse I was very aware it was about to happen if I moved quick I got bathroom but at that stage in my life I was having small s hundreds a day and they wondered if I was going insane I was very aware it was physical.
I felt myself going into sz have enough time say no ambulance aware something like throat closing sort hear far Away like people having party.
I get more than one sort e due to boink on head at simplistic can be live flesh part of body flick flick days on end the smell the common things.
After this week I think it maybe possible to be aware of what maybe happening or at least part of it.I don't see why it not possible when you think of brain all the brain cells get boink no two people going get identical cell damage one brain cell different then mine be different to others
 
I'm aware of what's going on during all of my simple partials, auras. I my lips and fingers might tingle, an arm or leg might shake but in general I just feel weird. I don't really know how to describe it.

Most of my seizures are complex partials and grand mals. I blank out during them and have no clue that it even happened unless there was someone there to see it happen. I did have one complex partial that I knew what was going on during. My whole body froze and I couldn't move or say anything but I knew what was going on around me and I knew what everyone was saying.

I've never been embarrassed to have a seizure in front of anyone. Yes people will be scared when I have a seizure but it's because they know there's nothing they can do to stop it. All they can do is make sure I don't hurt myself and wait for it to run it's course. No one has ever laughed at me and said things like "Ha, ha you just had a seizure!"

My family does have an odd way of making us feel better about things though, we try to get each other to laugh when were upset, mad and any other bad emotion. We have joked around about things I've done during seizures but I think it's sort of funny to find out some of the crazy things I've done. Just recently I had to put one of my pets down. As I was sitting in the vets office crying my eyes out my dad actually had me laughing at the same time!

If someone truly loves you or is an actual friend then they won't be laughing at you and making fun of you because you had a seizure. If they do then they aren't worth spending time with.
 
that made me laugh valeriedl because my family knows that after a seizure I insist on using my cookbooks for pillows...we laugh about it all the time...
 
Music36 said:
Hi heymisterrager,
I'm conscious when I have a complex partial. My state of consciousness is altered and I can't speak but I'm aware that I'm having a seizure. It can be embarrassing, but it's definitely not as bad as having a tonic-clonic b/c of the danger and after effects of a tonic-clonic. I bit my tongue so hard and tore it up so bad one time when I had a tonic-clonic that it was extremely painful and difficult to eat for about a month.
Click to expand...

Music36 - I am very curious to hear more about your complex partials where you are conscious. Right now my daughter is primarily having simple partials, but about once a month (and twice in April) she has what I have been calling an "intense focal seizure" because it is so much stronger than the auras/simple partials that she has a few times a week. She is aware during these episodes, and remembers them, but her consciousness and perception are both strongly altered - she usually feels compelled to get to the floor because it feels like she is about to lose consciousness. She says that she feels like the whole world is "tilting." Sometimes during these strong episodes she can speak normally (she will ask for help), and sometimes she can't. The episode itself lasts about 15-30 seconds, and is generally followed by pretty intense physical shaking and heart pounding that can last for 5-10 minutes, and sometimes crying and agitation.

I have been calling these episodes "simple partial seizures" because she does not fully lose consciousness, and I thought that was the line between simple and complex partials. But my instinct is that they are more than "just" a simple partial and I have wondered if they might actually be a type of complex partial seizure. They impact her tremendously both during the episode and for a few days afterwards, and we have not felt safe with her driving since they started happening again in November (she just has her permit, but she has not wanted to drive).

So if you would be willing to share more of your experience it would be very helpful to me as we try to figure out the best way forward. Thank you!
 
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