Re: Self-control of seizures

[Guest guest]

Zoe,

I never miss to read your postings!

Again, it was really encouraging to read about the self-control methods people are applying.

I would be so happy to learn more from others what they are doing. My daughter always used to grasp her right cuff with her left hand and hold it down. It helped to interrupt. One mother posted she slaps her baby lightly on the chest when she sees a seizure coming up, and it helps to abort the seizure.

It would be so fine to learn more about these techniques from the group members!

Thank you!

Katharina

Thema:[ ] Self-control of seizures--From Australia

Datum:06.05.01 07:53:49 (MEZ) - Mitteleurop. Sommerzeit

From: Zll51@...

Reply-to:

from an Australian epilepsy group

http://www.eqi.org.au/flame/study_of_self_control.html

A Study of Self Control Techniques Over the years various strategies have been used to prevent seizures. These have ranged from the use of leeches in ancient times to drug treatments in more recent times. Recently, Dee McLaughlin (then a student at Griffith University, now a Research Officer with Epilepsy Queensland) undertook a study which focussed on self-control techniques of seizure management. Self-control involves a variety of techniques for preventing seizures, many of which have been developed spontaneously by people with epilepsy. A wide range of techniques has been demonstrated by people with epilepsy to achieve seizure control. Generally these techniques fall into one of four categories: relaxation, self-talk, mental distractor tasks or motor distractor tasks.

[Guest guest]

In einer eMail vom 06.05.01 17:38:32 (MEZ) - Mitteleurop. Sommerzeit schreibt juliebailey@...:

i'd like to know how someone who had their seizures while asleep

could use self-control to stop them? ;-)

jules

________________________________________

Hi , there is literature about such cases, one handbook in English by s & Janis & Reiter, 1987,

second one report on a national research study by Heinen & Schoenbein, 1999, Pabst Science Publishers, on self control of epileptic seizures, where a lady trained herself to wake up on her special prodromal signs and was able to abort her seizures.

Katharina

[Guest guest]

i'd like to know how someone who had their seizures while asleep

could use self-control to stop them? ;-)

jules

_________________________________________________________________________

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[Guest guest]

>

>Hi ,

>there is literature about such cases,

>one handbook in English by s & Janis & Reiter, 1987,

>second one report on a national research study by Heinen & Schoenbein,

>1999,

>Pabst Science Publishers, on self control of epileptic seizures,

>where a lady trained herself to wake up on her special prodromal signs and

>was able to abort her seizures.

>

>Katharina

>

well, i certainly thank you for *this* info! :-)

i'll definitely look into it...

blessings

jules

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[Guest guest]

Hi all,

Does anyone know more about the s-Reiter Research Program other than

the web site? Although they say they have a 80% " recovery " , it seems that

haven't done research/papers lately (or the web site is seriously out of

date), & I can't seem to find anything on Reiter, & s isn't a

neurologist or psychiatrist. Does anyone know, first hand, if this is

legitimate? It's VERY interesting, but before I pack up my child &

babysitter & fly to CA, & spend time, & money, I want to know more about it

from other sources...

~Aja

>From: TVA12082208@...

>Reply-

>

>Subject: Re: [ ] Self-control of seizures

>Date: Sun, 6 May 2001 12:30:19 EDT

>

>In einer eMail vom 06.05.01 17:38:32 (MEZ) - Mitteleurop. Sommerzeit

>schreibt

>juliebailey@...:

>

>

> >

> > i'd like to know how someone who had their seizures while asleep

> > could use self-control to stop them? ;-)

> >

> > jules

> >

>

>Hi ,

>there is literature about such cases,

>one handbook in English by s & Janis & Reiter, 1987,

>second one report on a national research study by Heinen & Schoenbein,

>1999,

>Pabst Science Publishers, on self control of epileptic seizures,

>where a lady trained herself to wake up on her special prodromal signs and

>was able to abort her seizures.

>

>Katharina

>

_________________________________________________________________

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[Guest guest]

Aja,

There is a book by Dr. Reiter and Adrienne , the title is Epilepsy, A New Approach, What Medicine Can Do, What You Can Do For Yourself, Prentice Hall Press, NY, 1990.

The co-author Dr. Reiter is the same Dr. Reiter cooperating with Donna s in CA.

Adrienne , when writing this book, was giving workshops on self control of epilepsy in the Boston's New England Deaconess Hospital.

Dr. Reiter is an MD in neurology.

Donna s is a M.A. of rehabilitation and has made her PhD in clinical psychology.

If you read the mentioned book, you will know the many aspects of their method. You can also use it as a workbook. But you will not be able to do the therapy on your own.

There should be an eMail contact on her website.

Good luck to you!

Katharina

Hi all,

Does anyone know more about the s-Reiter Research Program other than the web site? Although they say they have a 80% "recovery", it seems that haven't done research/papers lately (or the web site is seriously out of date), & I can't seem to find anything on Reiter, & s isn't a neurologist or psychiatrist. Does anyone know, first hand, if this is legitimate? It's VERY interesting, but before I pack up my child & babysitter & fly to CA, & spend time, & money, I want to know more about it from other sources...

~Aja

[Guest guest]

Dear Aja,

I spoke with Dr. Donna s by phone today. That call was the

result of a message I posted on www.andrewsreiter.com

.. My talk with Dr. s was very enlightening. Dr. s

is an amazing woman. Considering all she shared with me, the fact

this woman is alive let alone a doctor is a miracle.

Dr. s has a lot of compassion for people with epilepsy...and with

good reason. She has epilepsy. However, she has not had a seizure

in 25+ years. How come? She does not take any medicaton.

How then could she be seizure free? Well, she learned to re-educate

her brain. Have you ever seen an "aura" flash before your field of

vision and not result in a convulsion? I have. I used to see

those flashes rather often. It used to be that if those auras did

not result in a seizure, I was left with a terrible headache. Now,

those auras simply go away. Why? Well, it wasn't the medication

that made them go away. It was that my brain somehow educated itself

not to go into a convulsion. That's what Dr. s says happened.

Dr. s knows first-hand that medication inhibits the brain's ability

to function. Yes, drugs can reduce the likelihood of electrical discharges

that can result in seizures. In order to do that the medication must

put certain areas of the brain to sleep or at least slow down the processing.

Dr. s says prolonged use of epileptic drugs can produce ADD-type

symptoms - like poor memory, an inability to stay organized or focused.

But, that is not all. Prolonged use of those drugs can result in

diabetes and lupus, among other diseases.

Dr. s and Dr. Reiter have written several books together on epilepsy.

Those books should be available in your local library. Also, if you

visit Amazon.com you should find a review and synopsis. Dr. s

is a psychologist. Dr. Reiter is a neurologist. Both are considered

the top two authorities in the world on non-drug treatment for epilepsy.

Even the federal government has shown interest in their research.

I think it would be in your best interest to send Dr. Donna s

an email.

Lamar

Aja Beasley wrote:

Hi all,

Does anyone know more about the s-Reiter Research Program

other than

the web site? Although they say they have a 80% "recovery", it

seems that

haven't done research/papers lately (or the web site is seriously

out of

date), & I can't seem to find anything on Reiter, & s

isn't a

neurologist or psychiatrist. Does anyone know, first hand, if this

is

legitimate? It's VERY interesting, but before I pack up my child

&

babysitter & fly to CA, & spend time, & money, I want

to know more about it

from other sources...

~Aja

[Guest guest]

I find the discussion of self-control of seizures very interesting. Does this doctor say anything regarding people like me that do not experience auras?

Jeanne

[Guest guest]

Jeanne,

I'm pretty sure she does. Even without auras, you can take note of

all the situations surrounding the onset of your seizures. From

there, you can develop strategies to raise your seizure threshold,

abort them, or improve your regroup time.

Zoe

> I find the discussion of self-control of seizures very

interesting. Does this doctor say anything regarding people like me

that do not experience auras?

>

> Jeanne

[Guest guest]

What is the name of Dr. s' book? I would be curious to read it. Although, I think I would be afraid to go off medication after getting finally settled again. I was seizure free (on Depakote) for 10 years. And then seizure free without medication for two years. I had my daughter (totally medication and seizure free!!). Then two days after giving birth, had a 10 minute long grand mal seizure. Following that, my neuro put me back on Depakote. Well, being a woman of child bearing years, I did not feel that was my drug of choice. I then found out the hard way that I was highly allergic to Tegretol.....then Dilantin. My doctor removed me from dilantin when hives broke out knowing that it had lowered my Depokote level during the trial period. I ended up with two ten minute grand mals in the same day and two seperate emergency rooms. Needless to say I decided to find a new Neuro. After a very long period of getting onto Topamax and getting weaned slowly from Depakote, I am now taking only Topamax and have been seizure free since July (10 months). I also have not driven since July. I just had an EEG on Tuesday. The results will show whether I can drive again (PA law says seizure free for 6 months). However, I believe without the medication, my doc would not okay me to drive because I do not have the auras. Any thoughts on this?

Jeanne

[Guest guest]

Jeanne,

The book in question is not co-authored by Dr. Donna s.

However, she works with the neurologist who did write. I believe

I am correct in saying you will find her quoted throughout the book.

The name of the book is "Epilepsy: A New Approach." You can learn

more about it by visiting the & Noble website. Just do

a search on for the book.

Lamar

jeashe wrote:

What is the name of Dr. s'

book? I would be curious to read it. Although, I think I would

be afraid to go off medication after getting finally settled again.

I was seizure free (on Depakote) for 10 years. And then seizure free

without medication for two years. I had my daughter (totally medication

and seizure free!!). Then two days after giving birth, had a 10 minute

long grand mal seizure. Following that, my neuro put me back on Depakote.

Well, being a woman of child bearing years, I did not feel that was my

drug of choice. I then found out the hard way that I was highly allergic

to Tegretol.....then Dilantin. My doctor removed me from dilantin when

hives broke out knowing that it had lowered my Depokote level during the

trial period. I ended up with two ten minute grand mals in the same

day and two seperate emergency rooms. Needless to say I decided to

find a new Neuro. After a very long period of getting onto Topamax and

getting weaned slowly from Depakote, I am now taking only Topamax and have

been seizure free since July (10 months). I also have not driven

since July. I just had an EEG on Tuesday. The results will

show whether I can drive again (PA law says seizure free for 6 months).

However, I believe without the medication, my doc would not okay me to

drive because I do not have the auras. Any thoughts on this? Jeanne

[Guest guest]

Jeanne,

The book is " Epilepsy: A New Approach, " by Reiter (s'

colleague) and Adrienne . It is available through Amazon.com.

My own suggestion would be to have your neuro carefully monitor you

as you learn behavioral strategies for raising your seizure

threshold. As things improve, try and get your neuro to work with

decreasing your dosage slowly while monitoring your progress. That

would be the ideal, any way. It would seem more safe to go a good

long while without seizures before attempting to drive again.

The behavioral strategies are often most effective in reducing the

amount of medication needed to control seizures. It is such an

individual situation, no two of us are alike. Since you had the

return of seizures so close to giving birth, were you ever evaluated

to see what role hormonal changes may have in your seizures? Here are

two links for information on that issue:

www.seizures.net/This is Dr. Yerby, an expert on women's issues in

epilepsy--some good articles there.

http://neuro.med.cornell.edu/NYH-CMC/ne-menstruation.html

No drugs are designed to cure seizures, only to suppress the

seizure activity. You may need to keep looking to find out what will

trigger yours, if you don't know, and to keep exploring ways to

reduce and eventually overcome them.

Zoe

[Guest guest]

Dear group,

Thank you for all the wonderful mail I got from you.

Please, allow me to answer come Monday, because again I am on the run, and when I will be back in the late afternoon, I will have a new telephone system. People have been telling me I might be hooked off until Monday IF problems arise (hence hooked off the internet!!).

So please, give me pardon for the delay (I still have the hope there will not be any delay).

I am already looking forward to all the beautiful contributions that come from you, meanwhile!

Bye for now, and have a pleasant weekend!

Katharina

[Guest guest]

Zoe,

Although my return of seizures was directly following childbirth, I think it was more related to my brochitis that I had during labor than my pregnancy hormones. I have only had 6 grand mal seizures in my lifetime. #1 - grain alchohol punch (before diagnosis & college stupidity), #2 walking pneumonia (before diagnosis & before meds), #3 didn't take my meds (young stupidity), #4 following childbirth after being med and seizure free for 2 years (had bronchitis and no sleep for 2 days), #5 & #6 both in same day following removal of Dilantin due to allergy and Depakote level was below therapeutic.

I do plan to get the book....just to read it for my own curiosity to see what I can learn. My new neuro says that one of the reasons they wanted to switch me to Topamax was precisely because they really are beginning to consider the older drugs " poisons " to the body if they are used long-term. I really like my new neuro. The folks at U of Penn really are up on the newest and the latest I believe.

I got the results of my EEG today. They are making me wait at least another month to drive. They found one small burst on the EEG. *sigh* However, I was very well controlled on Depakote for over 10 years and old EEGs showed 5 to 6 bursts while on the Depakote. They say that the bursts are indicative of the seizure disorder but do not indicate for sure that they would bloom into a seizure. It's just very difficult to be someone whose seizures were so very controlled for so long and I had so much independence for so long and now it's been close to a year that my " wings have been clipped " so to speak.

JEanne