Auras

[Guest guest]

Dear Jeanne,

First I would strongly recommend that you do this together with your doc. He has the results of the labwork that was done with you. Tell him what you are aiming at, and ask him for his cooperation.

Meds have a socalled therapeutic range. This range depends on one hand on the individual taking them, and on the other hand on what the neuro prescribing them defines as therapeutic success.

Some consider it sufficient to suppress the seizures, some aim at suppressing seizures plus auras (prodromal signs).

Sometimes patients complain to their neuro about their remaining auras because they frighten them, and the doctors raise the dosis of the meds. That is the only solution known to them by their style of training they get. Mostly.

From all those I have talked to, and from those clients I heard of from others, they were always able to find prodromal signs, after taking their time together, sitting down and going through the notes about circumstances that preceded the seizures.

It was the case that the clients HAD the auras, but did not recognize them as such. It takes an experienced person to see the connections between facts.

These "facts" can be manyfold: outward stressors, inward stressors like moods, cognitions, suppressed emotions etc.etc.. One has to work on all that at a soft pace. Slow but not endless, until you see the success.

Did you read the second part of my letter to Aja in which I described the idea of what Dr. Donna s is working on together with her patients? Rather lengthy, but informative to those who are not yet familiar with this method.

You have to go into observing yourself, taking down notes talk them over with Dr. s (or maybe she can transfer you to someone or recommend someone in your area she is cooperating with, please, ask her in a mail what would be best for you in the US), and after thorough examination of what you have observed, you will find out that you do have prodromal signs. They are as manyfold as are individuals.

Jeanne, take good care of yourself, and good luck with "moulding" your neuro into cooperation with you!

Katharina

In einer eMail vom 14.05.01 05:56:45 (MEZ) - Mitteleurop. Sommerzeit schreibt jeashe@...:

Katharina,

You suggested that maybe I lower the doses of my meds so that I would experience auras prior to my seizures...that maybe the meds are suppressing them? However, even when I have been on no meds during my lifetime I have never experienced auras. The seizures have always been pretty much out of the blue. I have also only had very few grand mal seizures (6 in my life). I th ink it would be difficult for my to learn to manage them when they are that unfamiliar to me. Also, when I do have them, they are pretty serious, like 10 minutes long.

Jeanne

[Guest guest]

Dear Jeanne,

It can be difficult for anyone to learn to control their seizures.

The kind of behavior therapy that helped me involved a technique

called " re-framing, " which was the inspiration for the more well

known method of Neurolinguistic Programming (NLP). What we tell

ourselves shapes how we experience and deal with our seizures. For a

long time I thought of myself as the hopeless victim of severe

irreversible brain damage and intractable seizures. It was like a

mantra I told myself each morning and throughout the day. I lived in

housing for the elderly and disabled in Seattle, living what is best

described as a marginal life. At most I could walk maybe three blocks

at a stretch, and spent much of my day in bed " managing " my hopeless

condition.

Drugs were no longer an option for me due to the side effects and

the lobectomy had not stopped my complex partials. The big social

event of my life was physical therapy where I was slowly overcoming

residual paralysis from my strokes and managing my incesant pain. At

this time of my life I needed A shoulder brace, back brace, hip

brace, ankle braces, and a cane, just to get to the bus stop.

When I started seeing the psychologist who helped me get my life

back on track, there was no hope of stopping my seizures. The

immediate goal was to learn some techniques to help me manage my pain

and the symptoms of my uncontrolled seizures. The symptoms ranged

from heart palpitations, migraines, to hallucinations, weeping,

mental confusion (I sometimes seized walking into the traffic in

downtown Seattle), and sheer terror for no apparant reason.

What I had to " re-frame " was telling myself that nothing could be

done to change or improve my situation. " I have intractable seizures

that send my heart into palpitations, " became " I'm learning breathing

and relaxation techniques to control my heart palpitations set off by

my intractable seizures. " That was just the start. We pegged away and

I kept changing how I framed my thoughts until I didn't need heart

medication anymore. I could control my breathing, go into a

relaxation routine, and stop the panic and palpatations.

I started learning how to control the other symptoms bit by bit.

Each step of the way involving a shift in my thinking, my dialogue

with myself. It took about five years for me (slow learner!) and many

other changes, diet, etc., but I've been seizure free since July of

1998. Everybody IS UNIQUE in what will trigger their seizures and how

they are affected by them. How we are affected by them and how we

come to recognize and respond to anything that may trigger them is

something we can make choices about.

If you are going to experiment with lowering your meds, I hope you

will be EXTREMELY CAREFUL, and not put yourself in a situation where

you can get injured or injure someone else. Maybe have a lot of food

cooked in advance or have someone help you heat it up. Make your

house as seizure safe as possible (I slept on a mat on the floor

until this year). And if at all possible, I hope you will try this

only with a doctor monitoring you--with a WRITTEN plan made up in

advance on how to proceed if you have a seizure while trying the

lower dose.

Even if you never have an aura, something changes before your

seizures. If nothing changes, preceeds your seizures, your nervous

sytem would be staying in a normal " unchanged " state, wouldn't it?

It may be difficult to learn how to influence our seizures, but it

is not necessarily impossible. Think of all the many ways you can

choose to raise or lower your seizure threshold and you will begin to

see how much control you have over your situation.

Regards,

Zoe

Katharina,

You suggested that maybe I lower the doses of my meds so that I

would experience auras prior to my seizures...that maybe the meds are

suppressing them? However, even when I have been on no meds during

my lifetime I have never experienced auras. The seizures have always

been pretty much out of the blue. I have also only had very few

grand mal seizures (6 in my life).

I th ink it would be difficult for my to learn to manage them when

they are that unfamiliar to me. Also, when I do have them, they are

pretty serious, like 10 minutes long.

Jeanne

[Guest guest]

Forgive me for intruding in this issue, but I strongly believe that

nobody should encourage any one else to lower the anti-convulsant

medications just like that. People have died of cardiac arrests, etc as

a consequence of uncontrolled seizures.

Aura is a sensation not present in all sufferers and thus trying to make

it a universal prognosticator is incorrect.

I'd wish we refrain from giving this kind of advice.

I am for natural cures, withdrawal from pharmaceuticals, etc but it must

be done with a full understanding of the consequences and most of all,

using a personalized methodology.

My apologies again for the intrusion.

FCR

jeashe wrote:

> Katharina, You suggested that maybe I lower the doses of my meds

> so that I would experience auras prior to my seizures...that maybe the

> meds are suppressing them? However, even when I have been on no meds

> during my lifetime I have never experienced auras. The seizures have

> always been pretty much out of the blue. I have also only had very

> few grand mal seizures (6 in my life). I th ink it would be difficult

> for my to learn to manage them when they are that unfamiliar to me.

> Also, when I do have them, they are pretty serious, like 10 minutes

> long. Jeanne

>

>

>

[Guest guest]

Dear ,

Thank you for your letter to the group.

Please, reread our inputs: Dr. Donna's, Zoe's, mine, and also Adrienne 's in her book of Epilepsy, A New Approach:

Noone of us recommends to wean off meds "just like that" as you worded it. Each and every of us keeps emphasizing: Get your neuro to cooperate with you on this. Check with your neuro. Don't do it alone. There is not one single person here who would say: "Throw those pills away" or "Just lower the dose". No!!!

I emphasize whenever I can: Stay on the safe side. When you do it, do it slowly. FIRST learn new techniques, THEN start weaning out.

I also described how some people are so overdrugged they cannot sense their aura. People do have auras, only they are inexperienced to listen to their bodies, to listen to what their emotions are, or what they are telling them.

A drug is there to prevent seizures, not to prevent auras and drive a person into psychotic episodes. So much sufferings come from these.

If a person can sense his/her own aura, he/she can develop countermeasures against a seizure, some have already found some sort of countermeasures in their own inborn wisdom, the most effective way is to do it with someone with knowledge about all this. Countermeasures can be refined and elaborated for this unique individual.

This is a field that can be studied and researched on, and I do not want to belittle those who have done that - investing their lifetime (they have only one like anyone else!)

Your are talking about "personalized methodology". And that is exactly the basis of the therapies we undertake with our clients.

And I do hope this discussion goes on.

And I do hope that you put in all your doubts. I take you very serious with your doubts! I have a feeling that you think you would put your child in danger, if you tried this road. I would not even say: "Start walking on this road", until you have gathered enough information, so you can feel safe for your child.

Please, put in your questions. They are important.

And last, not least, dear :

There was a time in my life when I believed what you believe now.

There was a time when I could have needed the information for my child.

But nobody was giving me any information.

Take care all!

Katharina

In einer eMail vom 15.05.01 03:10:11 (MEZ) - Mitteleurop. Sommerzeit schreibt fcunsrial1@...:

Forgive me for intruding in this issue, but I strongly believe that

nobody should encourage any one else to lower the anti-convulsant

medications just like that. People have died of cardiac arrests, etc as

a consequence of uncontrolled seizures.

Aura is a sensation not present in all sufferers and thus trying to make

it a universal prognosticator is incorrect.

I'd wish we refrain from giving this kind of advice.

I am for natural cures, withdrawal from pharmaceuticals, etc but it must

be done with a full understanding of the consequences and most of all,

using a personalized methodology.

My apologies again for the intrusion.

FCR

[Guest guest]

Dear ,

There also a time in my life when I was thinking like you are today.

After having tried everything there is to try, I have grown more and

more skeptical about universal approaches to epilepsy. I hope science

will unveil the underlying cause but in the meantime I'll remain guarded

of those who preach a universal approach to an individual's seizures.

The one thing people suffering from intractactable epilepsy do not need

is more dogma and that is what I am suggesting we all avoid.

Regards

FCR

TVA12082208@... wrote:

> Dear ,

>

> Thank you for your letter to the group.

>

> Please, reread our inputs: Dr. Donna's, Zoe's, mine, and also

> Adrienne

> 's in her book of Epilepsy, A New Approach:

>

> Noone of us recommends to wean off meds " just like that " as you worded

> it.

> Each and every of us keeps emphasizing: Get your neuro to cooperate

> with you

> on this. Check with your neuro. Don't do it alone.

> There is not one single person here who would say: " Throw those pills

> away "

> or " Just lower the dose " . No!!!

> I emphasize whenever I can: Stay on the safe side. When you do it, do

> it

> slowly. FIRST learn new techniques, THEN start weaning out.

>

> I also described how some people are so overdrugged they cannot sense

> their

> aura.

> People do have auras, only they are inexperienced to listen to their

> bodies,

> to listen to what their emotions are, or what they are telling them.

>

> A drug is there to prevent seizures, not to prevent auras and drive a

> person

> into psychotic episodes.

> So much sufferings come from these.

>

> If a person can sense his/her own aura, he/she can develop

> countermeasures

> against a seizure, some have already found some sort of

> countermeasures in

> their own inborn wisdom, the most effective way is to do it with

> someone with

> knowledge about all this. Countermeasures can be refined and

> elaborated for

> this unique individual.

> This is a field that can be studied and researched on, and I do not

> want to

> belittle those who have done that - investing their lifetime (they

> have only

> one like anyone else!)

>

> Your are talking about " personalized methodology " . And that is exactly

> the

> basis of the therapies we undertake with our clients.

>

> And I do hope this discussion goes on.

> And I do hope that you put in all your doubts. I take you very serious

> with

> your doubts! I have a feeling that you think you would put your child

> in

> danger, if you tried this road.

> I would not even say: " Start walking on this road " , until you have

> gathered

> enough information, so you can feel safe for your child.

> Please, put in your questions. They are important.

>

> And last, not least, dear :

> There was a time in my life when I believed what you believe now.

> There was a time when I could have needed the information for my

> child.

> But nobody was giving me any information.

> Take care all!

> Katharina

>

>

> In einer eMail vom 15.05.01 03:10:11 (MEZ) - Mitteleurop. Sommerzeit

> schreibt

> fcunsrial1@...:

>

>

>

>> Forgive me for intruding in this issue, but I strongly believe that

>> nobody should encourage any one else to lower the anti-convulsant

>> medications just like that. People have died of cardiac arrests, etc

>> as

>> a consequence of uncontrolled seizures.

>> Aura is a sensation not present in all sufferers and thus trying to

>> make

>> it a universal prognosticator is incorrect.

>> I'd wish we refrain from giving this kind of advice.

>> I am for natural cures, withdrawal from pharmaceuticals, etc but it

>> must

>> be done with a full understanding of the consequences and most of

>> all,

>> using a personalized methodology.

>> My apologies again for the intrusion.

>>

>> FCR

>>

>

>

>

>

>

[Guest guest]

,

Thank you for your input on this issue. I can assure you that I had no intension of lowering my meds. I was curious why Katharina was suggesting it. I have spent almost a year getting back on track and under control with my epilepsy after being controlled and seizure free for over 10 years. I do not have auras and my seizures can be very well managed with monotherapy. (It used to be Depakote, now they have switched me to Topamax since I have begun at the University of Pennsylania Epilepsy Center). I take 400mg per day of Topamax (standard dose) which is not alot. This, being a new medication, is also not measured by blood levels like the old medications were, so the doctor cannot go by " therapeutic levels " as Katharina suggests. I have a 15 month old beautifully healthy daughter to care for and I am very close to being able to drive again. No way am I playing with my meds or taking any chances at this point. I fully believe in my Neurologist (which is a " she " by the way who is very up on women's epilepsy issues *giggle*)......she also brings all decisions on my case in front of the team of senior Neurologists from the Epilepsy center. I know that my care is the best. Also, for a very large hospital, they give very personal service and all the time I need for answering questions and they return all my calls etc. Now, I would consider anything that would be helpful along WITH my medication, but no way would I play with going off medication again.

Jeanne

[Guest guest]

Hi Jeanne,

I am glad you are doing well and do not despair. There are many good

things in the 3-5 year horizon that should take a big bite out this

nasty condition (symptom).

Jeanne, physicians do not have a good understanding of the mass balance

for Topamax (they are not able to account where and how much goes to

which organ) and thus there is danger of accumulation of unwanted

metabolites in your liver or tissues. Think about " flushing " your liver

every six months or so with Milk Thistle extract a botanical extract

capable of removing lots of toxins from your liver and accessory organs.

Pls check with your neuro and give her sometime to research it.

Warm regards

FCR

jeashe wrote:

> , Thank you for your input on this issue. I can assure you

> that I had no intension of lowering my meds. I was curious why

> Katharina was suggesting it. I have spent almost a year getting back

> on track and under control with my epilepsy after being controlled and

> seizure free for over 10 years. I do not have auras and my seizures

> can be very well managed with monotherapy. (It used to be Depakote,

> now they have switched me to Topamax since I have begun at the

> University of Pennsylania Epilepsy Center). I take 400mg per day of

> Topamax (standard dose) which is not alot. This, being a new

> medication, is also not measured by blood levels like the old

> medications were, so the doctor cannot go by " therapeutic levels " as

> Katharina suggests. I have a 15 month old beautifully healthy

> daughter to care for and I am very close to being able to drive

> again. No way am I playing with my meds or taking any chances at this

> point. I fully believe in my Neurologist (which is a " she " by the way

> who is very up on women's epilepsy issues *giggle*)......she also

> brings all decisions on my case in front of the team of senior

> Neurologists from the Epilepsy center. I know that my care is the

> best. Also, for a very large hospital, they give very personal

> service and all the time I need for answering questions and they

> return all my calls etc. Now, I would consider anything that would be

> helpful along WITH my medication, but no way would I play with going

> off medication again. Jeanne

>

>

>

[Guest guest]

A good web site on Aura. A lot of reading.

http://home.xtra.co.nz/hosts/Wingmakers/THE%20SEVEN%20LAYER%20OF%20THE%20AURIC%20FIELD.html

Get a sneak peek of the all-new

AOL.com.

-- There are many paths to enlightenment. Be sure to take the one with a heart. - Lao Tzu

http://www.myspace.com/randomactskindness http://www.myspace.com/ http://prisonministry.net/sqh

http://talking-to-the-walls.blogspot.com/http://butterflygris.zaadz.com/

http://sanquentinwalls.batcave.net/ Love animals? Click on this site:www.theanimalrescuesite.com