Focal seizures/Benfotiamine, Andy

[Guest guest]

Andy, related to these strange movements, that occur simultaneously with

excitement, which well may be focal seizures we have found that small amounts of

Benfotiamine (60 mgs per day), fat soluble B1, appear to control them

completely. To recap; these occur intermittently on round, get worse the longer

the round lasts and fade after 4-5 or so days.

In researching this I have found a few studies reporting a connection between

the use of Benfotiamine to help focal seizures, one study that found this

vitamin helped prevent febrile seizures in infants, but mostly this vitamin is

used to control hypoglycemia and diabetic neuropathy.

She was severely hypoglycemic at 3, Mom was borderline gestationally diabetic,

one point below mandatory treatment. She does not present with any obvious

hypoglycemic symptoms currently. She has low levels of Vanadium on the hair

test, a change.

The report connected with her eeg is lost, of course, and the neuro who

performed them is no longer available. This report was not sent to the

pediatrician, yada, yada, yada, same page, different day. We will be getting

another eeg, asap, this time a 24 hour eeg and will present the findings when we

get them but in the interim, in the interest of my curiosity, given that

Benfotiamine does appear to control them, does this give us any answers to what

they might be?

What does Benfotiamine do? I searched Onibasu for all your past comments on

Benfotiamine and read the research links you posted but was unable to find a

connection, except to psychosis and nerve damage due to alcoholism, pretty sure

we're not dealing with either of those here.

Is there some kind of connection between hypoglycemia and focal seizures?

Thanks in advance,

[Guest guest]

> Andy, related to these strange movements, that occur simultaneously with

excitement,

which well may be focal seizures we have found that small amounts of

Benfotiamine (60

mgs per day), fat soluble B1, appear to control them completely. To recap;

these occur

intermittently on round, get worse the longer the round lasts and fade after 4-5

or so

days.

Any behavioral or emotional stuff go with them? Can your granddaughter describe

how

they feel? GABA will control most seizure types, you might try some and see if

it helps or

not if there are continuing problems.

> In researching this I have found a few studies reporting a connection between

the use of

Benfotiamine to help focal seizures, one study that found this vitamin helped

prevent

febrile seizures in infants, but mostly this vitamin is used to control

hypoglycemia and

diabetic neuropathy.

Yup. But it does everything it is going to do when you give it, wether or not

that is what

you expect.

> She was severely hypoglycemic at 3, Mom was borderline gestationally diabetic,

one

point below mandatory treatment. She does not present with any obvious

hypoglycemic

symptoms currently. She has low levels of Vanadium on the hair test, a change.

>

> The report connected with her eeg is lost, of course, and the neuro who

performed them

is no longer available.

Dead? Retired? In another state? If he still has a license somewhere you

ought to be able

to find him and point out that licensees are often disciplined for inadequate

recordkeeing

for just such issues....

or if the eeg trace itself is available someone can look it over.

>This report was not sent to the pediatrician, yada, yada, yada, same page,

different day.

We will be getting another eeg, asap,

This is actually the smart thing to do, torturing the neuro might or might not

work and is a

pretty negative thing to waste your life doing.

>this time a 24 hour eeg and will present the findings when we get them but in

the

interim, in the interest of my curiosity, given that Benfotiamine does appear to

control

them, does this give us any answers to what they might be?

No. Not that I know of.

> What does Benfotiamine do?

It gets far larger amounts of thiamine into the circulation than is possible by

giving

thiamine itself by mouth. It is just a fancy way to get a lot more thiamine

absorbed.

>I searched Onibasu for all your past comments on Benfotiamine and read the

research

links you posted but was unable to find a connection, except to psychosis and

nerve

damage due to alcoholism, pretty sure we're not dealing with either of those

here.

The " due to alcoholism " is actually " due to the B1 deficiency that excessive

alcohol

consumption causes. " Thus someone with a B1 deficiency or excessive need for B1

due to

something else (thimerosal toxicity? Naaaaahhhh) would have the same kinds of

problems.

>

> Is there some kind of connection between hypoglycemia and focal seizures?

Hypoglycemia can cause all kinds of neurological events, but not in a direct

sense, no.

>

> Thanks in advance,

>

>

>

[Guest guest]

----- Original Message -----

From: andrewhallcutler

Any behavioral or emotional stuff go with them? Can your granddaughter

describe how

they feel? GABA will control most seizure types, you might try some and see if

it helps or

not if there are continuing problems.

===>When asked she will say she " this might sound funny, but it feels like

there is dancing in my head " and points to the same area she points to when she

complains of a headache when on round. She will straighten and stiffen her arms

and her already large eyes widen. Then her arms will ever so slightly..start to

tremble. They last maybe 10 seconds or so. Except for the spasm that occurred in

the store, where it was clearly evident she lost muscle control, they are not

obvious, noone else notices them and we had to point them out to her father and

my dh, her grandfather.

Our concern is that they appear to be progressively, with each round, getting

more pronounced. She can stop them, control them, not sure what this means. They

are also more likely to occur when she is not busy, when she tired and get

worse past the third " on round " day. We will straight way put the GABA in when

she gets back from vacation.

Noone has made a big deal out of these but she's a very sensitive kid and I'm

sure she feels some of our internal overemoting. My very calm/patient dd has

just softly said...Calm down...and now she is self-conscious about them :-( I

have asked her during them " What are you thinking about? " and she will tell me,

without hesitation, something that she is excited about or anticipating.

I pulled every post you have written on seizures and medication and I feel

confident that we can handle this. I read your warnings not to allow seizures

to continue, that they self perpetuate and damage, heard this loud and clear,

we will heed the warning. I hate to ask the ? all the others have but if the

Benfotiamine/GABA (I know this is unlikely as the Benfotiamine does NOT control

them on round) control these is medication necessary?

I ask because I can't imagine the balancing act the medication will

necessitate given that most meds either effect the adrenals or thyoid, two of

our biggest areas of concern.====>

> The report connected with her eeg is lost, of course, and the neuro who

performed them

is no longer available.

Dead? Retired? In another state?

=====>Ran off with his secretary, had his license pulled for taking too many

happy pills, admitted to some psych ward, absconded practice funds? My gut

instinct after meeting him is that he abused a kid. We met with him prior to the

eeg and I told my dd under no circumstances to leave her alone with him even if

it meant she didn't get the eeg and we had to start over with someone else. Like

a lot of our kids, she is strikingly pretty and I got some creepy feelings about

the way he was looking at her (didn't look this way at my strikingly pretty, 30

year old dd).... what a world.

Initially I was outraged at the loss of the eeg, but think this will work to

our favor, getting a new, longer eeg might pinpoint the problem. For all the

countless times you have unselfishlessly helped us and countless others, we are

truly grateful.

>

[Guest guest]

> I hate to ask the ? all the others have but if the Benfotiamine/GABA (I know

this is

unlikely as the Benfotiamine does NOT control them on round) control these is

medication

necessary?

Yes.

> I ask because I can't imagine the balancing act the medication will

necessitate given

that most meds either effect the adrenals or thyoid, two of our biggest areas of

concern.====>

It actually isn't that hard to do.

Also neurologists tend not to titrate the medications, they just slam you with

the

maximum tolerable dose, some people do OK on less with much less side effects.

Take it step by step and worry about it when you have more information from

having tried

things.

If you have a COOPERATIVE doctor (on mainstream things) and these events are

relatively

reproducible you could try to get an EEG of one and resolve all the questions

promptly.

Andy