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Can you be conscious for a grand mal seizure/tonic-clonic?

A few weeks ago, at the age of 22,  I was diagnosed with epilepsy. I have had mainly focal epileptic seizures but recently suffered from a second tonic-clonic seizure in a month.

I was asleep and it was late at night for the first tonic-clonic seizure and I was at the hospital for EEG testing as well as video monitering.

During the second, it was late afternoon, I had suffered from two seizures that day and then after dozing off around 5:30, awoke to my neck turning almost all the way around and my arms twitching, then my body, and then my legs. I rememeber the entire thing... gasping for air and almost losing consiousness. I am currently taking 1500 mg. of Keppra and now will be increasing this dosage to 3000 mg.

I am 22, in perfect health... and now dealing with all of this. It is my knowledge that people that have grand mal seizures or tonic-clonic seizures, lose consciousness. Am I having some sort of different seizure, or what?!?! So confused...

Comments

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

Absolutely! I was diagnosed with epilepsy 17 years ago. I've had countless grand-mal seizures. I was conscious for most of them. I hate it! I wish I could black out so I don't have to hear myself choaking on my saliva, feel and see me shake and watch the people around me. Blacking out is much easier! The seizure seems to last forever.

Remaining conscious or remembering the episode can still very much be a tonic/clonic seizure, at least in my case.

Hope that helps! 

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

I hope everything is well.  I am glad I found Out that this is possiable.  I am writting a novel about a girl who has seizures and i am considering having her tell it in first person so I am just searching for ideas.  I hope any of you don't mind.  I had seizures for 21 years and was lucky enough to have surgery two and a half years a go and have been seizure free since.  Good luck

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

You can lose consciousness but you can also be somewhat conscious. When I was first having seizures as a child I could feel my eyes fluttering while i tried to control them (and hear my sister panicking while my father aided me). As I got older I was unconscious for the seizures and I assume that is because epilepsy got worse for me. I had a seizure about 5 years ago (the first in 13 years) and I was conscuious because I could hear my father asking if he wanted me to call the doctor. I haven't had a seizure since then and I take TegretolXR.

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

This is very interesting to me. During my last seizure I was all by myself and wasn't sure if it really was a seizure. I saw myself fall, had the forsight to grab a post rather than a set of free-standing shelves, and I think I yelled and screamed throughout the whole thing "This is not a seizure!" But I couldn't stop kicking and grabbing, and I had that awful panicky sense of falling down a never-ending hole that I get just before coming out of a seizure. I don't know if I was dehydrated, hyperventilating, having a seizure, or a combination of all three, because I had just barely (and I mean just gotten off the treradmill and took 5 steps) finished a 2-mile run. But when I finally got control of myself, I began to panic. Was it a seiezure? Was it not? Should I call someone? Who? My husband was at work, my parents were out of town, should I call my neighbor? I was afraid to use the phone, (why I don't know) and his house is too far to walk (we live in a very rural area). I ran out of the house and lay down on the cool grass and was able to collect my thoughts. Very interesting. I have never had a seizure where no one else was there, and I'm glad someone brought it up.

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

Hi kearneygrl01,

By definition, a person cannot be conscious during a grand mal/tonic-clonic. A common definition of
"Tonic-clonic seizure: A convulsion; newer term for gran mal or major motor seizure; characterized
by loss of consciousness, falling, stiffening, and jerking." Epilepsy, by Orrin Devinsky, copyright
2008, page 379.

Classifications of epilepsies lose objectivity and validity when they are based on the notion of
"consciousness," because "consciousness" has no scientifically acceptable definition. This causes
much confusion, and using terms such as "awareness," "responsiveness," "memory," etc. doesn't help
much.

The official definitions of simple partial, and complex partial seizures have this problem to a greater
degree (the definitions are being changed, but are only burying the problems deeper in "sub-sub-
definitions. LOL). "The definition of consciousness remains somewhat difficult for the neurologist (and
the philosopher, too) especially in terms of the basic neuronal mechanisms. Gloor in 1986 wondered
whether 'consciousness really represents a workable neurological concept in epileptology and in
neurology in general'; after several thoughtful pages he concluded that in epileptology the terms
'loss' or 'impairment of consciousness' were inadequate. For these reasons we prefer to speak of 'loss
of contact.'" Limbic Seizures In Children, Avanzini, Mira, Mai, copyright 2001, Chapter 6.

The gaps in memory from a tonic-clonic, from just before the seizure, to after the seizure, also
causes confusion in reflecting about the seizure, especially for secondary tonic-clonics. Memories
being formed during complex partials is frequent, but corrupted to the extent that the total absence
of memory during the secondary tonic-clonic cannot be reliably deduced from existant clues during and
after recovery.

I hope this helps.

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

My 10 year old son had his first seizure at age 8 and he recalled everything that was going on. He said how I was on the phone with 911 and that Mom was running around like a crazy woman. What broke my heart was the that he said to us the next day that he thought he was dying. He was aware of what was going on during his TC so I would say that yes it is possible. Other times he has not remembered.

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

when i had mine i didnt really lose constioness but was on aware of everything aroulnd me and anyone around me even my family ive had 4 grand mals since last nove im 31 and was told i had epilepsy

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

alos when i first start to have one my husband says i shake all over and being moving all over and screaming and turning blue before peramedics get there and then im very aggrvated when they try to tske me so they have to tye my arms down all though to this day i rember nothing of those 4 or any peramedics

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

Tweety12. I would love to chat w u about this we are just alike...please email me because I am new to this site my email is. Puddnsmom@alltel.blackberry.com

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

I remain concious during my seizures. I refer to them as complex partials and secondary generalized (I'll start with confusion and automatisms and that can progress into full body convulsions) since I know tonic-clonic by definition involves loss of conciousness and what I mention may involve some "alteration of conciousness." Mine are just as violent as a tonic-clonic in many ways, my head turns all the way back and my body snaps forward then. I can hear people talking, at times I can incoherently respond, I remember everything that happened but for some reason at the time I feel as if everything is distorted and strange. I often fight my eyes because they will start to track far away things in space and I will get lost staring off. I too have had the argument in my head that "This is not a siezure. Is this a siezure? What is going on? I am imagining this...I can stop this..." What people see and what I experience end up being very different sometimes. 

Often friends will come to the hospital and try to comfort me by saying "I know so and so, they are off much worst, they lose conciousness." It makes me a bit upset, they don't realize maintaining conciousness is it's own internal battle sometimes. 

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

Hello,Hoping all is well.  I also have complex partial seziures.  Mine are a little diff. then yours.  Most times I can go as far as holding a conversation with someone while it's going on. Problem is , once its over I don't remember anything.  I started w/ my seziures when I was 16. I'm now 30 y/o and after 2 surgeries I'm still having problems.  The original post of  Can you be conscious for a grand mal seizure/tonic-clonic?  caught my eye because over all my years I've had about 10 or so Grand mal seziures and until the one I had last evening I've never been awake for. I normally wake up in the back of an ambulance on the way to the hospital. I'm hoping things are getting better for you ...It's gunna b ok!  

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

In my experience, you can certainly be conscious to some extent. My neurologist tells me that it's not very common. I'm commenting on this one since I had a very vivid T-C a couple of nights ago as the most recent experience from which I can draw. As my experience with E and T-Cs in particular, grows, I see patterns and similarities forming. Though my wish for you is for lots of seizure-free time, you may see similar patterns yourself over the long haul with this condition.

I remain conscious of who is around me and of what they are saying to me, although I tend to amalgamate them into a complex "dream" in which I am usually struggling for air, and for my life. I might even shout encouragement. "That's helping" I suddenly found the power to shout the other night to a bewildered neighbor of mine whom I was convinced was trying to pull me out of something resembling a collapsed building or mine, when in reality he was only trying to stop me hurting myself. I encouraged him a couple more times until I ran out of gas and gave into the fact that I was going to die, ending up in a heap.

The first time this happened, I was convinced I'd retained full consciousness. Now, I'm more certain that I have a "blended" consciousness between what's really happening and what I'm dreaming, incorporating elements of actual reality into my inner nightmare.

And it continues, still, when my eyes are open and I'm coming around. Having been (presumably) aware that I'd heard glass breaking during my T-C, I lay on the ground afterward, convinced that blood was pouring from an opened artery and that life was slipping away. My wife could not convince me otherwise for some minutes and, indeed, I could feel life ebbing away, as well as blood pooling around my body... wet clothing and all. In reality I was neither badly cut not wet.

When I got home to clean up my scratches, however, I stripped off under the harsh bathroom light to find that my nail-beds on my hands and nails were blue. I had been -- and still was -- extremely oxygen deprived. Not good.

To what extent the oxygen deprivation plays a part in all of this, I am unsure. I suspect, though, that it plays a part and have wondered if I am able to grab a lungful of air occasionally more readily than those of us who simply can't during their T-Cs and therefore end up "out for the count" with no recollection at all.

I'm not an expert... just thinking out loud for others to come along and correct me.

All good wishes, as always

NM

 

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

MC i am aware of what peopel are saying.  I have simple partials and will suddenly out of nowhere fall.  My husband says i have this distal look in my eyes and they roll upward.  i feel like i have no body.  I can not feel myself.  I can hear my head hit the ground or bounce but i can not feel it.  It's like i am in a building that is falling down and i am watching from inside as it crumbles.  I am always afraid i will not come out of this locked in state.  i can't move or talk.  It seems like it is forever but it can last as little as 30 sec to 2-3 minutes.  I have not awarness of my own breath.  Does any one else have this type of seizure?

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

When I have my seizures (which are also around the time I fall asleep or shortly thereafter) I go in and out of consciousness.  I remember seeing my husband looking at me and apparently I tell him that I love him. Everything seems like it's in slow motion.  I know what's going on--that's the strange and scary part. I always wonder how I can stop the seizure from continuing.  I feel trapped in my own body--unable to catch my breath, clenching my hands, my body stiff.  I'm on 3000 of Keppra and 450 Lamictal. 

 It would be interesting to find out if there is anything a person can do to slow down a seizure?? I'm not up-to-date with the latest technologies or theories--is there anything a person could try or look into? 

I hope everything goes well with you,

Terri 

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

Actually there are non-epileptic seizures that you remain awake for and they are called Pseudo seizures. Doctors often mis diagnose people with a different type of seizure as it is easy to do so with this type of seizure. With pseudo seizures your head can move back and forth, pin and needles feeling, numbness, heaviness, etc... However, Pseudo seizures are psychological and a person should see a psychiatrist to try and figure out what your triggers are for these seizures. You may not ever figure out what the trigger is but, the more you talk about what is bothering you or what might of happened to you in the past the more you will help yourself. Stress, abuse(physical, mental and, sexual). Often people have a hard time dealing with their past and allow themselves not to think of these things. Subconsciously, your brain reacts to these issues and will eventually cause these seizures. A lot of doctors have a hard time dealing with patients who have these seizures because, they cannot be controlled by medication. In turn if you are taking medication for epilepsy and you are actually having pseudo seizures they can a risk in having unnecessary seizures. You should contact your doctor right away and ask if you might be having these seizures. The best way for your doctor to find out if you have these seizures or not is to have a video EEG in the hospital under a controlled environment. Often they will reduce your medication to try and induce a seizure so they can tell if your brain shows activity on the brain then that is a normal seizure if there is no activity then you are having pseudo seizures. Im only sharing this because, I recently found out about this and I believe everyone should know. Dont get me wrong it is possible to have both epileptic seizures and non-epileptic seizures. I hope this helps everyone.

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

I have only had something like 8-10 TC seizures in the last 18 years, but I remember at least half of them. It isn't as perfect a memory as I would have of, say, a conversation with a friend, but when it comes to the agony of feeling every single muscle in your entire body tensing to its full potential at the same time, I can remember that indescribable pain pretty well. It was not my imagination, and it was the most agonizing feeling I've ever felt in my life. On other occasions I blacked out and did not feel anything.

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

I had suspected my son was conscious during a grand mal once becuase when I said "I am going to move you away from the wall" he just did it himself while flopping and looking unconscious.

This year is Cleveland Clinic while doing a VEEG and having grand mals he was able to repeat back everything that had been said in the room during those seizures verbatum. The staff there said it is less common but it does happen.

He commonly has drop a attacks and partials. He's completely aware during those as well.

My son is 22, his became known when he was almost 18. Let me know if you'd like to talk to him.

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

9 out of 10 of my fits I can be awake through it... It can feel amazing, scary and right out there sometimes... I can see old memories flash by and can feel something just wanting to come out of me... I know it sounds crazy but yeah... But dont get me wrong I hate having it and it causes all sorts of dramas... But I live with it...

Re: Can you be conscious for a grand mal seizure/tonic-clonic?

9 out of 10 of my fits I can be awake through it... And I have mostly Grand Mals... It can feel amazing, scary and right out there sometimes... I can see old memories flash by and can feel something just wanting to come out of me... I know it sounds crazy but yeah... But dont get me wrong I hate having them and it causes all sorts of dramas... But I live with it... I have also found I get angry and cranky for a few days before I have one... So I can be moody alot hehe