"Unkindling," Behavior Mod for Seizure Control

Zoe

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While the kindling model presents an idea of how seizures can develop, behavior therapy offers a lot of options for learning to undo the damage and improve seizure control.

This excellent article on using behavioral strategies gives a very good overview on how behavior modification can be learned and used to manage seizures, especially for those that are not responding to drug therapy. A partial quote is followed by a link to the full article. In includes a neat review of some of the work done by the Andrews\Reiter program.

The Application of Behavioral and Psychological Methods in Controlling Seizures
Behaviour and Psychological Methods Volume 8 Issue 3
Jean MacKinnon, M.A.
Reprinted from the Journal of Cognitive rehabilitation,
Sept./Oct 96, with permission

Despite the advances of modern medicine in the treatment of epilepsy, there are still a number of patients with epilepsy who are prevented from living a normal life. This may be due to the fact that anticonvulsant medication is not completely effective in controlling seizures (Tempkin & Davis, l984). Approximately 80% of individuals with tonicclonic seizures and only 40% of those with partial complex seizures have complete control with medication (Reiter & Andrews, 1987). There are other problems as well. Many patients may find that the level of medication required to completely control seizures produces side effects that are almost intolerable, such as memory loss, drowsiness, inability to concentrate and difficulty in performing basic cognitive processes (Rousseau, 1985).

In centuries previous to the discovery of medication for treating epilepsy, it was known that various physiological and biological factors seem to "trigger" seizures. In the last century, the author of "Alice in Wonderland," Lewis Carroll, discussed his epilepsy, describing the connection he saw between mental stresses and seizures (Cohen, 1982). In fact, "medical writers since Galen (2nd Century A.D.), have described people who could avert seizures voluntarily" (Charlton, 1994).

More recent studies also indicate that emotional and biological stressors trigger seizures (Rajna & Veres, 1989). Based on this knowledge, studies have been conducted using progressive relaxation, cognitive behavioural therapy, biofeedback and counseling to reduce seizure frequency. The Andrews/Reiter Epilepsy Research Program has developed a workbook for patients and professionals to apply these methods in a formalized program (Reiter & Andrews, 1987). Of patients treated in this program, 83% were able to achieve complete seizure control (Andrews and Schonfeld, 1992).

In this paper, there will be a discussion of the Andrews/ Reiter program and how it was implemented by the Victoria Epilepsy and Parkinson's Centre.
Link to full article:
http://www.epilepsytoronto.org/vol8-3.html
 

RobinN

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I find their success rate so encouraging.
I wonder if we can begin a study of our own here.
 

Zoe

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I'll reread the article. What are your thoughts? What did you find so encouraging? Let's toss this around a bit and see if we can come up with a plan for a study and some ideas on how to get one organized. Speber, Brain, Birdy, Bernard, anyone else? Let's put our heads together on this. Great idea!
 
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RobinN

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83% is encouraging

Here is a recommendation for relaxation:
http://www.wilddivine.com/blog/read/hair-pulling-can-do-more-for-you-then-you-realize

After you’ve practiced concentration and learned to focus on one thing at a time, you can proceed to the next stage: no thought at all. Achieving a silent mind is difficult, but when to attain it the experience is powerful. A technique I advise is viewing your thoughts as separate from your self. When a thought appears, make a conscious decision to throw it out of your mind. Over time you realize that you are capable of allowing or rejecting thoughts. Your real “I” is not a collection of thoughts, but something far deeper. This is the most significant realization of meditation - that you do not have to be a slave to your thoughts.

Through meditation, you attain the power to control your thoughts, and on occasion stop them completely. Don’t be discouraged if you can’t attain a silent mind straightaway. It takes time and practice. There is nothing really else to it; meditation is a simple and spontaneous action. Unfortunately, our mind is used to complication and it takes time to unlearn bad habits.
http://www.pickthebrain.com/blog/4-reasons-you-should-meditate-and-how-to-get-started/
 
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RobinN

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I have been thinking about this a lot the last two days Zoe. One would need to notice and be aware of their mood, outlook, heartbeat, energy level, ... (what else?) in order to keep an honest journal about this. Perhaps some kind of chart that would then show stress vs seizure patterns. Then I would think one would need to be aware of alternatives in thought patterning.

The brain adjusts before we are aware of the need to. Noticing changes and patterns before we do. However if we can be ahead of the game... yet is that possible.
Some have claimed to have put off activity of the brain that would send them into the tizzies.

I appreciated a statement in Epilepsy: A New Approach
Remember the disorder that causes epilepsy is there all the time, but the seizures are not. If you have epilepsy don't focus on teh fact that you have a brain disorder Instead marvel at the way your brain and body work harmoniously to create order.
 

Bernard

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Let's toss this around a bit and see if we can come up with a plan for a study and some ideas on how to get one organized. Speber, Brain, Birdy, Bernard, anyone else?
Sorry Zoe, it's been a hectic weekend and even though I read your post some time ago, I haven't had any time to consider your request/question. I'm always open to suggestions for things that would be of value to the members.

I'll have to revisit this thread when I've got a clear head though.
 

Zoe

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Sorry Zoe, it's been a hectic weekend and even though I read your post some time ago, I haven't had any time to consider your request/question. I'm always open to suggestions for things that would be of value to the members.

I'll have to revisit this thread when I've got a clear head though.
Give yourself a few days to recover!!! We can pick this up later. There's some potential here, at least to do something on an informal basis.
 

Zoe

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I have been thinking about this a lot the last two days Zoe. One would need to notice and be aware of their mood, outlook, heartbeat, energy level, ... (what else?) in order to keep an honest journal about this. Perhaps some kind of chart that would then show stress vs seizure patterns. Then I would think one would need to be aware of alternatives in thought patterning.

The brain adjusts before we are aware of the need to. Noticing changes and patterns before we do. However if we can be ahead of the game... yet is that possible.
Some have claimed to have put off activity of the brain that would send them into the tizzies.

I appreciated a statement in Epilepsy: A New Approach

And be careful not to make it more complicated than it is. This is the type approach I used. Brainstorming on it with others is very important, for then one can sound out an option and get some feedback on how it may play out in reality. I love that quote from the book. It is so very true.
You're on to something good here Robin. Let's keep tossing ideas around. Maybe we can come up with some things for folks to try along with whatever else they already do to manage their seizures. One way the psychologist was helpful to me was being there to let me discuss when something I tried failed. He was a great sounding board and mentor as I kept revising what I was doing until I began to see success. Everyone in this group could likely find at least one thing or more to do that would reduce the risk of having a seizure.
 

speber

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Great find Zoe!....

Relaxation tape?......hmmmmm?........sounds like auditory stimuli to me!
:tup:

I knew it!:woot:

My work here is done....hehehe.

Seriously, awesome article. I was intrigued by the re-training using sound-effects tapes....what a scary prospect goin' in! But coming out----all's well!

Relaxation sounds REALLY good...the thought of incorporating a 'listening' period (among other things) for the sake of health and science sounds like a great idea....I'm IN for some brainstormin'!
:rock:
 

RobinN

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I also wanted to bump this up as the idea of "unkindling" is encouraging
Let us seriously come up with some ideas for a study
 

Bernard

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Folks are welcome to start a 'diary' thread in the History Book forum detailing their efforts in applying this technique (similar to Robin's thread for Rebecca's neurofeedback experience).
 

RobinN

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That's a great idea Bernard.
I just flashed on the thought that years from now researchers might be calling on CWE members to use this information.
 

Zoe

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I also wanted to bump this up as the idea of "unkindling" is encouraging
Let us seriously come up with some ideas for a study
Maybe a group of members would like to commit to all learning one technique, keeping notes, in a "diary" as Bernard suggested and see what the results are in six months or so. There are a lot of techniques to consider.
 

RobinN

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I would like to "sign on" but I am not the one that would commit to working on a technique. I will continue to write about what I see, and perhaps our technique would be to be more careful about electrolytes. Though the biggest change for us has been neurofeedback.

Any others willing to commit to learning a technique?
 
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Robin.......I would be interested in being a part of this. I had great success in the past with a self-hypnosis tape for irritable bowel syndrome and am a great believer that our bodies have more ability to heal themselves than we give them credit for.....Roxie
 

Molly97

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Robin,
My doctor suggested this approach to getting more control over my seizures when I saw him last month. You know, for a GP, he's very into trying alternatives.
He called it relaxation technique. Now, back in the 80's, during a very stressful time in my life, a therapist taught me progressive relaxation. Haven't done it in years. Is this what this is about?
My doc last month was talking about several of his patients that use meditation for anxiety/panic attacks and suggested that maybe I should pursue that line as well. Is this what we're talking about here?
Without going to a therapist and going through a "program" as described in the study Zoe quoted, how do we, who want to do this, proceed? Is there a book that describes the methods? There are so many crap books out there on everything, how do we choose?
I would be interested in learning more about these kinds of methods, especially since I have the "stamp of approval" from my doc.
 

Bernard

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Is there a book that describes the methods? There are so many crap books out there on everything, how do we choose?
Yes: [ame]http://www.amazon.com/exec/obidos/redirect?tag=projectmana0a-20&path=tg/detail/-/0802774652/ref=ase_projectmana0a-20?v=glance&s=books[/ame]
 

RobinN

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Perhaps what we could do is work through the book together and have a discussion about it. I noticed that the book was rather inexpensive on Amazon ($5.00). It might be worth it for those interested, to purchase it, and we can begin an online workshop / discussion.
I might be able to encourage Zoe to come back here to host it, since she was successful in this method.
 
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