Re: still searching

October 7, 2005

I'm not but...anyway, in the AM, I take a multivitamin, 30 mg CoQ10,

1000 mg flaxseed oil, 500 mg taurine, 500 mg magnesium and 50 mg 5-HTP. In

the PM, I take 100 mg B complex, 1000 mg flaxseed oil, 500 mg taurine, 500

mg magnesium and 50 mg 5-HTP. This has been an absolute miracle for me. In

the five years since I've started to do this (and stopped all AEDs), I've

had four seizures (all grand mal - no complex partials at all). It's been

almost 21 months since the last one and, before that, I had been seizure

free for 23 months. Considering that stress and being overly tired are my

two greatest triggers and that I was under an unbelievable amount of stress

from 2002-04 (long, long story but it was two years of everything possible

that could go wrong did without end) and never had any trouble at all, it is

been amazing.

>From: saki1129@...

>Reply-

>

>Subject: Re: [ ] still searching

>Date: Thu, 6 Oct 2005 07:56:16 EDT

>

>In a message dated 10/6/2005 6:28:45 A.M. Eastern Standard Time,

>lindybuzz@... writes:

>

>current and successful vitamin

>and supplement routine

>

>Dear ,

>Please share with us your current and successful vitamin routine

>

>¸.·*´¨) ¸.·*´¨)

>.·*´¨)(¸.·´ (¸.·susan¸.·*¨)¸.·´

>

October 7, 2005

GOOD FOR YOU!!!!!

It is easy to forget that it is our bodies and our decisions and that

the professionals we engage are to support our goals. In the case of

my son it was to be seizure free and off of all drugs.

THere are lots of neuros..... shop around.

Hope this helps

mjh

>

> When I stopped taking meds and switched to my current and

successful vitamin

> and supplement routine, I did it against medical advice and was

dropped by

> my neuro. It no longer bothers me since I have gained control over

my

> seizures after more than 20 years of one drug or another with no

control at

> all. Sometimes, we have to make a choice - do we want to be

healthy or do

> we want to make our doctors happy?

>

> >From: " daniel " <color369@s...>

> >Reply-

> >

> >Subject: [ ] still searching

> >Date: Tue, 04 Oct 2005 21:28:57 -0000

> >

> > I got quite a response from my last message. thank you

> > I am still searching for something to help control my seizures.

> > Since my seizures only occur in my sleep I dont get any auras

that I

> >know of. My wife tells me I sit up and sometimes walk around like

sleep

> >walking. The biofeedback sounds like one of the best type of

overall

> >cures that I have found since it doesnt involve medication. When I

can

> >afford one of those machines I'll probably by it and try it. The

other

> >method that sounds better than meds is the vitamin and nutriant

method

> >but as someone mentioned in a response that getting my neurologist

to

> >get me off of meds is like pulling teeth. They are all in

compliance

> >with the pharmaceutical companies. I personally get the feeling

that

> >most of the doctors in this field are more concerned with pushing

the

> >product rather than curing the patient.When I got started with

> >carbatrol I had medicaid and my copay was only a dollar. Now I am

> >paying $135 a month to have seizures once a month. I'm also afraid

to

> >go too far out there with complaints because I dont want to be

deemed

> >disable and lose my livelyhood liscense etc. I'm definitly

searching

> >for the R+R book on epilepsy I'll probably find it at Borders.

> >

October 7, 2005

Hi

Not everyone has the ensyme necessary to convert flaxseed oil into

EPA and DHA which are critically important brain fats.

FISH OIL to 10 grams a day has made a huge difference for many with

seizure disorders as well as mood disorders and things like ADD,

Alzheimer's and etc.

Hope this helps

mjh

>

> I'm not but...anyway, in the AM, I take a multivitamin, 30

mg CoQ10,

> 1000 mg flaxseed oil, 500 mg taurine, 500 mg magnesium and 50 mg 5-

HTP. In

> the PM, I take 100 mg B complex, 1000 mg flaxseed oil, 500 mg

taurine, 500

> mg magnesium and 50 mg 5-HTP. This has been an absolute miracle

for me. In

> the five years since I've started to do this (and stopped all

AEDs), I've

> had four seizures (all grand mal - no complex partials at all).

It's been

> almost 21 months since the last one and, before that, I had been

seizure

> free for 23 months. Considering that stress and being overly tired

are my

> two greatest triggers and that I was under an unbelievable amount

of stress

> from 2002-04 (long, long story but it was two years of everything

possible

> that could go wrong did without end) and never had any trouble at

all, it is

> been amazing.

>

October 8, 2005

I WANT TO BE HEALTHY!!!!!!!!!!!!!!! To hell with the doctors! *grin*

Nai

On Oct 6, 2005, at 3:22 AM, CL Muscat wrote:

> When I stopped taking meds and switched to my current and successful

> vitamin

> and supplement routine, I did it against medical advice and was

> dropped by

> my neuro. It no longer bothers me since I have gained control over my

> seizures after more than 20 years of one drug or another with no

> control at

> all. Sometimes, we have to make a choice - do we want to be healthy

> or do

> we want to make our doctors happy?

>

>> From: " daniel " <color369@...>

>> Reply-

>>

>> Subject: [ ] still searching

>> Date: Tue, 04 Oct 2005 21:28:57 -0000

>>

>> I got quite a response from my last message. thank you

>> I am still searching for something to help control my seizures.

>> Since my seizures only occur in my sleep I dont get any auras that I

>> know of. My wife tells me I sit up and sometimes walk around like

>> sleep

>> walking. The biofeedback sounds like one of the best type of overall

>> cures that I have found since it doesnt involve medication. When I can

>> afford one of those machines I'll probably by it and try it. The other

>> method that sounds better than meds is the vitamin and nutriant method

>> but as someone mentioned in a response that getting my neurologist to

>> get me off of meds is like pulling teeth. They are all in compliance

>> with the pharmaceutical companies. I personally get the feeling that

>> most of the doctors in this field are more concerned with pushing the

>> product rather than curing the patient.When I got started with

>> carbatrol I had medicaid and my copay was only a dollar. Now I am

>> paying $135 a month to have seizures once a month. I'm also afraid to

>> go too far out there with complaints because I dont want to be deemed

>> disable and lose my livelyhood liscense etc. I'm definitly searching

>> for the R+R book on epilepsy I'll probably find it at Borders.

>>

October 8, 2005

I have not taken full control but I started omega three fatty acids

about three years ago. I have gotten rid of nine seizures and 234

auras a month. I do take many vitamins. I am still on meds, but I

am now down to one kind and on a lower dose too.

But I have tried and done just about everything medical. Still

working on the neurofeedback. I will get back to that several months

from now. I believe it did help me. I had a grand mal because lack

of sleep and the doc got a little afraid. But I believe it can and

will help me months to come.

EpilepsyApproach/

>

> Has anyone in this group had luck controlling a high volume (20+

focal

> partial to tonic)of daily seizures with a routine of vitamins and

> supplements? Trying to get a sense for the success rate of

vitamins in

> various situations. Thank you!

>

> ~

>

> [ ] still searching

> >Date: Tue, 04 Oct 2005 21:28:57 -0000

> >

> > I got quite a response from my last message. thank you

> > I am still searching for something to help control my

> seizures.

> > Since my seizures only occur in my sleep I dont get any

auras

> that I

> >know of. My wife tells me I sit up and sometimes walk around

> like sleep

> >walking. The biofeedback sounds like one of the best type of

> overall

> >cures that I have found since it doesnt involve medication.

> When I can

> >afford one of those machines I'll probably by it and try it.

> The other

> >method that sounds better than meds is the vitamin and

nutriant

> method

> >but as someone mentioned in a response that getting my

> neurologist to

> >get me off of meds is like pulling teeth. They are all in

> compliance

> >with the pharmaceutical companies. I personally get the

feeling

> that

> >most of the doctors in this field are more concerned with

> pushing the

> >product rather than curing the patient.When I got started

with

> >carbatrol I had medicaid and my copay was only a dollar.

Now I

> am

> >paying $135 a month to have seizures once a month. I'm also

> afraid to

> >go too far out there with complaints because I dont want to

be

> deemed

> >disable and lose my livelyhood liscense etc. I'm definitly

> searching

> >for the R+R book on epilepsy I'll probably find it at

Borders.

> >

August 1, 2006

Sandy,

I think I may have directed you to Cheri's plastic surgeon, who

removed her capsules, and is in Philly. The chances of finding a

doctor in Bucks County, PA, who can perform this surgery is probably

very slim. I know it's not convenient for you to go to Dr. Kolb or

Dr. Feng (Atlanta and Ohio, respectively), but they have done alot

of this type of surgery and it is worth it to get it done by someone

who has done this many times before.

Sis

>

> a reminder...

>

> Still searching for a surgeon in Bucks County

> that knows how to remove capsules and scar tissue

>

> If anyone comes across one please let me know.

>

> Thank You,

> Sandy~

>

August 1, 2006

I am about to have my surgery here in VA. I will let you know how it turns out with this PS. I think you are only about 3 hours away from VA. auntsisnj <auntsisnj@...> wrote: Sandy,I think I may have directed you to Cheri's plastic surgeon, who removed her capsules, and is in Philly. The chances of finding a doctor in Bucks County, PA, who can perform this surgery is probably very slim. I know it's not convenient for you to go to Dr. Kolb or Dr. Feng (Atlanta and Ohio,

respectively), but they have done alot of this type of surgery and it is worth it to get it done by someone who has done this many times before.Sis>> a reminder...> > Still searching for a surgeon in Bucks County> that knows how to remove capsules and scar tissue> > If anyone comes across one please let me know.> > Thank You,> Sandy~>

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

August 1, 2006

Sandy,

God bless your surgery and may you heal really quickly!

Love,

Sunny

> >

> > a reminder...

> >

> > Still searching for a surgeon in Bucks County

> > that knows how to remove capsules and scar tissue

> >

> > If anyone comes across one please let me know.

> >

> > Thank You,

> > Sandy~

> >

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

January 12, 2008

Good luck on Monday. I have a meeting with the school on Feb. 5 . I think

home school is a good answer. fonz has been over tired sense the colchicine so

the dr. is checking his bone cells to see if that's why he is so tired will

know Monday let us know what happens . hugs char

January 12, 2008

Good luck on Monday. I have a meeting with the school on Feb. 5 . I think

home school is a good answer. fonz has been over tired sense the colchicine so

the dr. is checking his bone cells to see if that's why he is so tired will

know Monday let us know what happens . hugs char

January 12, 2008

Hi Debbie

I will say a prayer for Hans until he gets better. Hang in there, us mums are

very strong!

Filakia

xoxo

Joann

January 12, 2008

Hi Debbie

I will say a prayer for Hans until he gets better. Hang in there, us mums are

very strong!

Filakia

xoxo

Joann

January 13, 2008

Hi all

Thanks for your caring and encouragement. At times like these it counts!

Take care

Debbie, mum to Hans, almost 13, ??

South of France

January 13, 2008

Hi all

Thanks for your caring and encouragement. At times like these it counts!

Take care

Debbie, mum to Hans, almost 13, ??

South of France

January 15, 2008

Hi Melody and all

Thanks so much for your encouragement regarding homeschooling. My

sister who homeschooled 2 children for a year while working in

Malaysia said her kids came out in front. My problem is that we won't

always be here to help direct him in his work. I will be home 2 days

a week but work a good distance away the other 3. Our ex-babysitter

said she would help out sometimes. Hans is quite able though and had

to do homeschooling during the summer hols to make up for work missed

during the year and he handled it amazingly well - all alone! We

realise that this in a sense will take off some of the pressure

knowing that if he doesn't do a test today he can do it tomorrow or

the next day. At the moment that will be very welcome. How did you

compensate for the missed social interaction and sport etc and did

your children enjoy the experience? Hope you don't mind filling us in

as this is all so new to us. Thanks again.

Debbie, mum to Hans (13 in Feb) ??

January 17, 2008

I know many parents are concerned about the social aspects of home

schooling, but it has not been a problem for us. My children are

actively involved at our church, play soccer & basketball in community

leagues, and have friends that are also home schooled. Home schooling

has grown so rapidly in the past few years and there are many families

who home school in our community. There are home school groups that

have their own sports teams, science fairs, go on field trips together,

etc. There is a wealth of information (maybe too much) on the internet.

I know that many states here have specific requirements for home

schoolers and in some countries it is illegal – may be something you

need to look into where you live.

I also work two days a week, but am fortunate to have my husband &

mother-in-law actively involved in the home school process (and with an

often sick child). When looking for a curriculum, look for

something that will work well for you as a working parent and well with

an often sick child. There are many to choose from with different

styles of teaching/learning and finding the best fit for your situation

will be invaluable.

Please keep us informed how it works out with juggling between the home

schooling and episodes.

Thanks,

Melody

January 18, 2008

hi melody i was wondering if you could give me a brief summary of your childs

health symtoms my son was diagnosed w about a year now but all of the

things that are going on with him really arent adding up to everyones else

health history. he on top of all the symptoms has a very bad digestive

systems bad conspistation problems slow growth major speech and receptive delays

he will be 3 in feb we are going up to mayo clinic again this time to do head

scans thankyou very much emily

January 18, 2008

hi melody i was wondering if you could give me a brief summary of your childs

health symtoms my son was diagnosed w about a year now but all of the

things that are going on with him really arent adding up to everyones else

health history. he on top of all the symptoms has a very bad digestive

systems bad conspistation problems slow growth major speech and receptive delays

he will be 3 in feb we are going up to mayo clinic again this time to do head

scans thankyou very much emily

January 19, 2008

Hi Cheri and all

Hans definitely tires out much more quickly than other children his

age. This has always been the case. Today it is obvious that he

wears out fast, particularly with physical effort. He tells me often

that his legs and joints hurt but I sometimes wonder if it's because

he is often so inactive that when he does do more vigorous physical

exercise everything hurts. It's really hard to know. He

unfortunately gets sick much more often than before. Up until the age

of nearly 12 it was really cyclical with more or less all the

symptoms together once a month. For the last year he has had more

nausea and vomiting than anything else and much more often than once a

month. Some weeks he is sick all week with only 2 days before he is

sick again. Maybe this has nothing at all to do with the Periodic

Fever. It doesn't seem consistent with what most people experience

and is certainly different to what we were used to. We are hopeful to

get some answers very soon.

Take care

Debbie, mum to Hans, 13 ??

South of France

January 19, 2008