Tips: communicating with loved one during a seizure...

[loving life]

I have grown up with serious seizure most my life...I've had them for about 25 yrs. I am very fortunate that my seizures are mostly under control, with a healthy diet, plenty sleep, and medicine.

During most grand mal seizures...I have appeared to others to be unaware of what is going on. Yes I was unaware, and unaware that I was having a seizure, but I was able to "hear" others around me (only during very brief moments). I spoke about this to my parents, to prove it to them, I quoted what I had heard, and the placement of the people in the room.

As a grade school child, my family and I tested it out and here is what worked for me...during each grand mal after discovering this:

* The family member would tell me "(my name) I know you can hear me", then they would ask me simple questions to get me to respond:
a. Where are you?
b. Who am I?
C. (and other questions that might be an interest to me at the time)
They would continue this through out the seizure until I became conscious.

It did work, I could hear them (not during the whole seizure but only at very brief moments). Sometimes I thought I was answering their questions and afterwords they would tell me I didn't. Then there were times that as I was coming out of the seizure I was answering. Either way, this helped me to pull out of them, instead of having seizure after seizure. The seizures, became shorter and further apart.

I have my theory on why this works, but do not know for sure. The family goal with this was to get me to start focusing and stop the current seizure, or get it to end quicker, resulting in less damage to my body.

I know this is somewhat unconventional, and it may not work for everyone, but maybe it will help someone that may be going through this with a loved one.

God Bless,

Loving Life

[epileric]

A while ago a neurologist told me that I should focus on something like counting backwards by 2's starting with 99. It works by creating normal firing within the brain which lessens the abnormal firing. I rarely get very far but it seems to lessen the seizure and/or the post-ictal effects. I've actually been surprised how little post-ictal effects I'd gotten after such large seizures when doing that.

It sounds like that's what's happening in your situation. If nobody is around to ask questions try thinking something that requires focus (like math).

[loving life]

good suggestions, I will do that, I've never know what to do when alone. I've always relied on my family to help me through them.

I will do that.

Thanks,

LL

[RobinN]

This is discussed in the book:
Epilepsy: A New Approach
Smells too, seem to hold off a seizure that is threatening, according to the author, Adrienne Richard

[Melpier]

I have prayed my way out of seizures at times. It's just not always easy tothink about that when you are having seizures ... expecially when they are nocturnal! when it happens it lake the Lord cut the seizure off. It's actually kind of cool. God is so awesome.

[Nakamova]

I don't get real warning auras, but if I'm feeling nervous about a possible seizure, I try and recall something I've memorized, like song lyrics. Because my seizures originate in the right brain, where that kind of memory/recall activity also takes place, my hope is that the recall process can help prevent or "derail" a seizure.

[loving life]

It's good to hear everyone's experiences...
as more people discuss these things it surely will help someone.

Thank you all,

LL

[darcness]

My wife had this happen to her as well. Only after her partial seizure though. She had 3 grand mals before she got onto medication. Then after getting on medication she had her only partial.

We didn't even notice the seizure, but we certainly noticed the post-ictal. Strange because her post-ictal with her t-c's only lasted 10-20 minutes. With her partial it lasted for HOURS. I was talking to her and she could hear/comprehend most of what I was saying, but she couldn't respond. When she did respond it would just come out as nonsensical. It was VERY strange. After she regained full cognitive function she told me that she knew what was going on the entire time, but couldn't communicate properly so we had no idea.

I knew something was different because when I told her we needed to go to the ER (after it had lasted for so long) she started to get very upset and cry. I know she HATES the ER so I should have known she was aware of what I was talking about. Hind sight is always 20/20 though and it was a whole new experience for me and her.

[loving life]

It's good to hear others insight and experiences. It sure makes me feel better.

This is a subject that I don't see much information about, nor have I ever heard Dr's mention. This is why it's important to talk about.
This has been a very valuable asset to me and my family.

Thank you for your thoughts everyone.

[katie's mom]

This is very helpful to parents, too! Thanks for sharing. We have tried so often/hard to talk to Katie during absence, etc. seizures but have felt it was so futile, this puts everything in a better light.

[Kayleesmom]

I totally agree with Katie's mom. We always talk to Kaylee during her seizures, but we didn't know if she could hear us or not. My husband doesn't remember being able to hear anything during his seizures, so we didn't Kaylee could either. This gives me hope that my comforting her is actually doing something. Thank you so much.

[darcness]

I really do think it's worth it to at least try. If you speak to some one during a seizure they can sometimes recall some of what's going on or being said once they are out of post-ictal.

The most crazy thing about what happened with my wife was when the EMT's showed up. They asked her a bunch of the usual questions, birthdate, name, social security, etc. and she answered them all correctly. Then they asked if she wanted to go to the hospital and she declined. Yet she couldn't even figure out how/where to sign the consent form. Very strange indeed.

[Chestnut_ mare]

I will FULLY agree with the other two mums that it is great to hear about other peoples experiences. I will often talk to my 20 month old son when he's having a seizure. Sometimes nurses would comment that he can't hear me. I would still insist that they let him know when they are about to do "something" like give a needle or even if all they are going to do is shift him.
One of the things that I find does sometimes, comforts him is to stroke or run my fingers through his hair. I can't hold his hand or touch any other part of his body because of the jerking.

[Trinity]

I'm really suprised to hear so many others saying they could hear during their seizures. I recall hearing things during mine too (tonic-clonic) but when I mentioned it others seemed to think that was strange. I'm not sure if they really believed me or not. I recall one particular seizure i'd had at the 7 eleven and I didn't know what was happening. I was about 11 and I hadn't had a seizure in a number of years so I didn't remember what it felt like. Anyway, I remember thinking that I had to get my mothers attention but I couldn't. I heard my mother turn around and she said 'oh my gosh she's having a fit' (or something like that) and I remember thinking 'oh that's what this is'. I imagine a lot of people actually hear but don't necessarily remember it post ictal and even in that case talking could at least reassure and make the patient feel a little less scared.

[Nakamova]

One definition of a toni-clonic is loss of consciousness -- so you wouldn't be able to hear while having one. But maybe you started out with a simple partial seizure -- where you can hear, but not necessarily control what's going on -- and then it generalized and became a tonic-clonic.

[BuckeyeFan]

I have never been aware of anything during my tonic-clonics. I am completely out. I would have to say that my hearing is one of the first things to return during the postictal phase. Either hearing or touch.

Some mention holding off seizures by focusing. When I had my last tonic clonic seizures (long time ago), I would get very angry as they started. I do feel like all the focus of that anger held some off while still auras. This always worried me because I was afraid I might lash out and hurt someone else. I am not exactly a little guy.

[alivenwell]

This may sound weird, but I focus on nothing. Any stimuli around me is ignored. That way I can focus on any internal aura and counteract against it.

[Meetz1064]

I were able to do this. I have no warning, and I'm always asleep when my t/c's happen. I'm almost ENVIOUS that you can. On the other hand, I'm actually HAPPY for you--I think it's pretty cool.

Take care!

Meetz