Has anyone used will-power to stop a seizure?

[John-Forrest]

I am wondering if anyone has managed to stop a seizure by some form of will power? I've heard of people who do it by, say, focusing on some other part of their body. (Like, focus on your left big toe & it'll go away.)

I know for myself my seizures start with a high pitched ringing in my right ear (probably where the trouble spot is, right temporal lobe). If I can distract myself, refuse to let it get to me, I can sometimes stop it in the nick of time. Also, I know that certain areas of my brain calm me down, especially in the back of my head. (Sort of like a mellow hum or buzz I sometimes get deep in meditation.) It somehow feels like a "safe zone".

This may be a bit heavy, but I am speculating whether there is a kind of "brain yoga" where one can control things like this. Body yoga focuses on consciously working finer muscles in different parts of the body. Could the same be done in the brain?

Anyone have any thoughts about this?

[POSITIVEPERSON]

No I have never been able to do that. Thou my husband thinks if I concentrate hard enough maybe I could. But by the time I have a grand mal I have already been lost in the absences szs and they are coming closer to together in clusters.

Riva

[RobinN]

John, I have read this too on another site. Quite a few suggestions there. My daughter doesn't have much warning. If she does at all, it is multiple thoughts. She tells me that she has no control from that moment on, and can't direct her thinking to change it. So the best way I predict for her is to just not get to that point.

Now then... where did I read how to do that?

[speber]

I can tell you that when I have full on GTC's, I usually don't get any warning...GAME OVER. However, MANY times I'll get what may be some sort of 'aura' (I can't be sure), that even my wife has noticed. It sounds like a seizure itself, but it's not...what it is exactly, is the overwhelming need to concentrate/focus on something/ANYTHING! I have always been able to focus and get past it within 20-30 seconds. In that time I AM fully functional and coherent...just very worried! The feeling is that if I DON'T focus I will be letting something take over...so I would have to say if I've been somehow escaping seizures---the answer to your question is YES---but probably not reliably!

Realistically for me---my will power alone would not COULD NOT ever touch my GTC sessions though...they are too much to handle I'm afraid...leaving that one up to music to soothe the savage beasties and minimize the impact!

Good Luck!

[Paula Apodaca]

I have been epileptic since 3 years of age. Much to the chagrin of my family, will power cannot stop a tonic-clonic event. It doesn't even do a really good job at the smaller, partials. One of the most difficult things to accept is that you are not in control.

Each of us wants to be in control. It is bred into us and reinforced by culture, that we should have control of ourselves. E. makes this a near impossibility. It is also terribly frustrating.

I can say that Zen breathing techniques and taking my meds has reduced my seizure frequency, but not eliminated them.
But, each of us has to try out the thngs we think will help us. And, keeping in mind that E. is varied in the ways we each experience it, there is certainly nothing misguided about attempting to use one's will to try to help.

My 2 cents...

[Bernard]

I have read posts here and there from people who claim they have stopped auras from generalizing into complex partial seizures or tonic clonic seizures, but they did not claim to stop a complex partial seizures/tonic clonic once it started.

As I understand it, part of Dr. Andrews' Neurobehavioral / Cognitive Behavioral Therapy (CBT) revolves around identifying your specific seizure triggers and learning to manage/control them so seizures don't start.

[Zoe]

I am wondering if anyone has managed to stop a seizure by some form of will power? I've heard of people who do it by, say, focusing on some other part of their body. (Like, focus on your left big toe & it'll go away.)

I know for myself my seizures start with a high pitched ringing in my right ear (probably where the trouble spot is, right temporal lobe). If I can distract myself, refuse to let it get to me, I can sometimes stop it in the nick of time. Also, I know that certain areas of my brain calm me down, especially in the back of my head. (Sort of like a mellow hum or buzz I sometimes get deep in meditation.) It somehow feels like a "safe zone".

This may be a bit heavy, but I am speculating whether there is a kind of "brain yoga" where one can control things like this. Body yoga focuses on consciously working finer muscles in different parts of the body. Could the same be done in the brain?

Anyone have any thoughts about this?

John,

Absolutely, and there is quite a bit of research and some books on this. It isn't called "will power" but " behavioral or self-control" and can be learned. Distracting yourself as you described can be a very effective way of learning to control your seizures on your own.
There's been quite a bit of research the last ten years on using yoga, especially the breath control learned in hatha yoga, to control seizures. In the 1980s Robert Fried, PhD did a fascinating study. He taught people who had seizures the deep diaphragmatic breathing used in yoga. At the same time they were monitoring their brain wave activity and their CO2 blood levels. I think everyone in the study benefitted.
I learned self-hypnosis and relaxation techniques that helped me learn to stop my seizures. You may want to get a copy of "Epilepsy: A New Approach" by Richards and Reiter. They have a whole chapter on stopping seizures on your own. The Andrews\Reiter Epilepsy Research Program in Santa Rosa, CA. is the only clinic in the US that specifically teaches self-control of seizures.

http://www.andrewsreiter.com/

I interviewed Donna Andrews of the clinic for my web page several years ago.
http://www.indiana.edu/~pietsch/zoeseizure.html

Keep in mind no one thing will work for everyone or work as effectively for everyone. For some people, a noise can startle them out of a seizure, for others a good or bad smell may have the same effect.
Zoe

[Zoe]

There are books and lot of research in med journals on this. JoAnn Dahl's work focused on children with seizure disorders.

Books on Behavioral Approaches to Treating Seizure Disorders:

• The Neurobehavioral Treatment of Epilepsy; David I Mostofsky and Ingve Loyning, eds; Lawrence Erlbaum Associates;1993; ISBN: 0-8058-1106-0.
• Epilepsy: A New Approach; Adrienne Richard and Joel Reiter, MD; Walker and Company; New York; 1995; ISBN: 0-8027-7465-2
• Epilepsy - a Behavior Medicine Approach to Assessment and Treatment in Children; Joanne Dahl;Paperback(May 1993); Hogrefe & Huber Pub; ISBN:0889371067
• The Challenge of Epilepsy; Sally Fletcher; 1986;Paperback Reissue edition (August 1986); Aura Pub Co; ISBN: 0961551399

[John-Forrest]

Zoe,

Thanks for the info. I just located "Epilepsy: A New Approach" in my local library. Will check it out. I am aware that different things work for different people. This kind of thing takes intensive self-observation and experimentation. I am pleased to hear you have found something that works for you.

[John-Forrest]

Reply to Bernard:

"I have read posts here and there from people who claim they have stopped auras from generalizing into complex partial seizures or tonic clonic seizures, but they did not claim to stop a complex partial seizures/tonic clonic once it started."

Bernard, this is very true with my own observations. Sometimes I can stop something coming on by simply refusing to give it energy. But, once the "cat is out of the bag", there's no turning back. The trick is to find out what triggers are, then "Don't go there!"

[Zoe]

Reply to Bernard:

"I have read posts here and there from people who claim they have stopped auras from generalizing into complex partial seizures or tonic clonic seizures, but they did not claim to stop a complex partial seizures/tonic clonic once it started."

Bernard, this is very true with my own observations. Sometimes I can stop something coming on by simply refusing to give it energy. But, once the "cat is out of the bag", there's no turning back. The trick is to find out what triggers are, then "Don't go there!"

John,
You are right on target. Hope you find the book useful too.
Zoe

[John-Forrest]

Hello Zoe,

I have been reading the book you mentioned. I think I read it before, but always find the advice interesting. One thing in particular (and this should be another thread) is whether one wants to stop seizures. My own seizures are only in occasional clusters with months & months of non-seizure periods. So the meds are only for those emergency times.

One interesting thing brought up in that book "Epilepsy: An New Approach" is the idea that having seizures and high levels of creativity/spiritual insight are linked; if you suppress the seizures, you also suppress that special intensity of living. (Same dilemma for persons with mental illness.)

In other words, what if these experiences are not something malevolent, but are, in fact, a Gateway to a Higher Level of Consciousness! Unfortunately, people in this society fear seizures as if it were a VERY BAD THING which must be "controlled" and kept out of sight. (I suspect this has to do with everyone's inner terror of going out of control, "losing face", so to speak.

John

[RobinN]

I understand where you are going with this John, but I am not so sure smacking ones head on concrete is a Gateway to a Higher Level of Consciousness. Going out of control is difficult for a teen, so yes we would like them to stay away. Not hidden, just contained. I would like the energy release to be used in a positive way, creative way, and not hurtful.

Rebecca is at a high level of creativity. From a very young age, prior to her speech, she communicated with dance. I am fearful as you mention that the use of meds will supress the creativity along with the seizures. I am afraid that the seizures will burden her emotionally, and she will not be willing to show her beautiful expressive self in other ways.

[John-Forrest]

Hello Robin,

I can certainly agree with you there! I'd rather be in a safe place of meditation than all bloodied up out on a street!

I'm not trying to define the experience for everyone, but am simply suggesting "Gateway to a Higher Level of Consciousness" is another way to look at it. I am currently going through a process of self-discovery and exploring this in more depth. I have considered that facing this thing head on may be a way to overcome it. Or: Perhaps by making friends with, and listening to, that part of my brain that is doing this, I may somehow convince it it is in our best interests for it to quieten down.

Again, this is not necessarily for everyone. It takes a lot of energy to take the tiger by the tail, but I am now 55 and good and ready to deal with this.

Also, this Dilantin (combined with Celexa) is making me pretty stoned, so I may go a bit off the wall here.

[RobinN]

I do understand. I would do it too if it were me.

[Zara]

umerous times i have used willpower to pull myself away from a trigger that was triggering me into one or to block out a certain trigger that was bothering me on a level that it would cause one. Though many times i call it just shaking it off and making myself have a small seizure so i don't have a much larger one. it's almost like a real intense shiver. It lets the energy out. It is very useful in the winter time and it's easy to make yourself shiver. I can cut my intense seizures drastically. Archaic but then again I'm a bit archaic in the treatment I've been given.

[John-Forrest]

Zara,

Your remark here was of particular interest to me:
"making myself have a small seizure so i don't have a much larger one".

Because my seizures do not come except once in while, I don't get to experiment as much as I would like. But I have considered that if I could develop the will-power to CAUSE a seizure (in a safe place, of course, preferably lying in bed), I would also have the ability to STOP it when the real thing comes up.

Anyone have thoughts on that one?

[Bernard]

I think it would be better to either short circuit them altogether (CBT) or teach the brain how to function so that seizures just don't happen anymore (neurofeedback).

[ammeread]

Yeah i definitely have , just ignoring the aura and thinking of something else has stopped my seizure on more than one occasion

[BlueSkies2220]

Reply to Bernard:

"I have read posts here and there from people who claim they have stopped auras from generalizing into complex partial seizures or tonic clonic seizures, but they did not claim to stop a complex partial seizures/tonic clonic once it started."

Bernard, this is very true with my own observations. Sometimes I can stop something coming on by simply refusing to give it energy. But, once the "cat is out of the bag", there's no turning back. The trick is to find out what triggers are, then "Don't go there!"

Exactly! After living with partials [untreated and undiagnosed from childhood] until my 20's when I started to generalize and have a tonic clonic I have found that there is a way to stop a partial from generalizing. Once it goes so far, its too late, however and I can not stop it. It could ALSO be that the partials that i have stopped from generalizing have been mild partials and it was meant to happen that way. So either i am fooling myself or there really is something to it. I think that it may also depend on my stress level and how 'healthy' I am. If I have been too stressed out, then it might be a loosing battle.

And I really dont think that this is something that everyone should try...because unless you really know your triggers, you understand your threshold and you have studied your type of seizure..it could be a dangerous game to 'distract' yourself and try and stop the seizure from coming on when really what you should be doing is taking that time to find a safe spot to lay down and prepare for the storm.

I have read that proper breathing and stress levels may have something to do with our seizure threshold and if that is the case, then your mind can go a long way to either stop or prevent yourself from having a full-blown attack.

But, in the end its not so easy. Its not like we can all just 'will' it away. I think it takes YEARS of going through what you've been through to understand how the mind works, and for some of us who do generalize into tonic clonic's - we all dont have a warning that its coming. Even if there was a way just to will it away, i still would want to depend on medicine just for the simple fact that medicine controls my seizures for the most part.

The times that I have stopped a seizure from generalizing - its hard to describe. When I have my complex partial's - it makes me feel like i am having deja vu.. and so if I dont do what i tell myself will happen next [like moving a certain way, riding the 'wave' as i call it, saying certain words etc.] then there is a chance that i can break out of it. Especially if i shut my eyes hard, try to breathe, and distract myself by rocking back and forth.

Sounds wierd but the goal is to fight against what my brain is telling me will 'happen next' - and the stupid thing is that I create it all myself...im the one who tells myself what i should be doing next which feed the feeling of deja vu. I am sentient during that time of my seizure. When things get dark then i am generalizing and i am no longer conscious. Its probably a good thing that i cant remember parts of what happen to me before and after...

The memory loss is a blessing in disguise.