Seizures

[Guest guest]

I had three grand mal seizures one night in January. Then there appeared to

be no more problems...but I have been having these eye episodes that my

sister had pointed out to me about two months before the grand mals. But I

have noticed them the last two months, *I am trying to decide if they could

be absent seizures or my body's attempt to fight fatigue and stay awake, my

eyes kind of stare forward while my eyelids are *how to describe this* wide

open, very wide open and a slip into a dream state, I am vaguely aware of

this, generally it happens right when I wake up in the morning although I

have awakened during the night unfocused and confused and felt like I have

just came out of a fighting battle and sore muscles. I also every once and

a while when I stare down my eyes move real fast, that is the best that I

can describe it. I am not on any medications because they say they don't

want to give them to me because it was my first time and they don't know

what has caused them. I had one eeg four days after the episode, the grand

mals' I don 't know if it is true but someone was telling me that they

shouldn't have given an eeg that soon after the seizures, it came back as

normal. I don't know much about this. Doctor is thinking about having an

overnighter eeg done and also checking for sleep apnea.

Cyntha Landon Idaho

PS doctor said it takes three eeg's to rule out seizure activity. I don't

remember my grand mal seizures...My husband called an ambulance and I became

fully aware shortly before they arrived. Was upset he called them but can't

blame him.

>From: " melillo " <mellillo1@...>

>Reply-lyme-aidonelist

><lyme-aidonelist>

>Subject: [Lyme-aid] Seizures

>Date: Thu, 2 Sep 1999 22:35:50 -0400

>

>From: " melillo " <mellillo1@...>

>

>Cyntha,

>I am so sorry you are not finding the care you need. Do not start

>questioning yourself though, you know what is going on in your body, you

>feel the pain. I agree with getting the checklist and filling it out . You

>have to get it assertively in your mind so you can have something to

>convince the drs. with. Call around and talk to the nurses and see if you

>can get a feel for the drs. beliefs. Maybe look for someone at a teaching

>hospital, do you have one nearby. Since Igenex is on the west coast call

>them and ask if they get samples from any drs. in Idaho (that is where you

>are, right?) The people there are very nice I have found just explain in a

>prewritten and reasonable speech what you need. I don't know if they can

>legally do this but give them a try, what do you have to lose?

>Now, as to the seizures. Are they grand mal or petit? Do you have them

>during the day or only at night? How long does it take to recover from

>them? Are you taking depakote, dilantin or lamictal? I have a lot of

>experience with seizures, my husband has nocturnal seizures. He also has

>sleep apnea. They may be right about your seizures being related to that

>if

>you have them at night. Anyway, let me know and I will try to find some

>answers for you in that area. It is so frightening, I am sorry you have to

>deal with this.

>It is good to keep your kids as your incentive, how could you give up

>looking at those faces! But you are important too, don't underestimate

>yourself and your intelligence. Pain can confuse us, depress us, it is

>hard

>but you can get better. In the meantime follow Dr. B's protocol for

>eating,

>sleeping and vitamins. It helped us all considerably when we gave up

>chocolate, caffeine, carbonation and simple sugars. We also make ourselves

>exercise a little every day even when it hurts like ****! Remember the

>spirochete hates heat and oxygen, both produced by exercise.

>Keep the faith!

>Sharon

>

>

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

[Guest guest]

Lovette,

sorry to hear about the new dx.. the majority of the epilepsies can be

controlled with medications. bummer how this disease is adding more symptoms

even though we are on antibitoics.

elizabeth

In a message dated 7/7/00 1:38:56 PM Eastern Daylight Time, smott@...

writes:

<< Can they deny me SS disability

now? Isn't this a slam dunk??

Now for the happy news - can anything be done for this? Or is this

just another happy CNS degenerative condition >>

[Guest guest]

I have had seizures...though I had one EEG it showed noth ing. But recently

talking wit h many of those with epilepsy..they said my EEG was done to soon

after my grand mal seizures in Jan 1999....they did mine about three days

after. I have been trying to get my doctor to do another one but he doesn't

see any point..but then again he doesn't see the absent seizures that I go

through either. Sigh....but I understand how scary they are...good luck

Lovette.....I have also been told it takes at least Three EEG's to outrule

Seizure activity....

Cyntha Landon Idaho

[ ] Seizures

> Dear Friends: I just the results of my EEG and it says I have an

> abnormal EEG with paroxyms and " epilepsy process " with frontal

> predominance. Anyone else have this? Can they deny me SS disability

> now? Isn't this a slam dunk??

> Now for the happy news - can anything be done for this? Or is this

> just another happy CNS degenerative condition?

>

> Lovette

>

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

> CatalogLink offers hundreds of catalogs for FREE!

> Click here to find the latest and greatest in the

> world of catalogs - check out our featured Picks of the Week

> and also look to enter our $500 catalog shopping spree!

> 1/6068/11/_/484634/_/962991449/

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

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what it is today.

>

>

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>

>

[Guest guest]

There's also a type of epilepsy that sometimes but does not *always* show up

on EEG testing and is diagnosed by symptoms at times. I have it and have

been having a nuerologist follow me for years. It's called Temporal Lobe

Epilepsy - a websearch should glean some information on it. It's more petit

mal seizures consisting of disorientation and so forth. I've had 2 negative

EEG's.

Jaqui

Re: [ ] Seizures

> Lovette,

>

> sorry to hear about the new dx.. the majority of the epilepsies can be

> controlled with medications. bummer how this disease is adding more

symptoms

> even though we are on antibitoics.

>

> elizabeth

>

>

> In a message dated 7/7/00 1:38:56 PM Eastern Daylight Time,

smott@...

> writes:

>

> << Can they deny me SS disability

> now? Isn't this a slam dunk??

> Now for the happy news - can anything be done for this? Or is this

> just another happy CNS degenerative condition >>

>

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

> CatalogLink offers hundreds of catalogs for FREE!

> Click here to find the latest and greatest in the

> world of catalogs - check out our featured Picks of the Week

> and also look to enter our $500 catalog shopping spree!

> 1/6068/11/_/484634/_/962998614/

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

>

> Many thanks to our founder and friend, Marta McCoy, for making

what it is today.

>

>

> Easy Reference:

> Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

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>

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-Offtopicegroups

>

> Archives can be accessed at lyme-aid

>

> Please visit the chat room at

chat/lyme-aid

>

>

>

[Guest guest]

Lovette,

I am a lymie seizurer. The seizures I have had have been real

doozies,

grand mals. Never had them before Lyme. Mine begin in the left

temporal lobe. I've had clean EEG's and I've had bad EEG's. I take an

anticonvusant for them and have never had a seizure while taking it.

I

have still had bad EEG's while on it. Get this, my EEG's are only bad

when I relapse. I don't even really need medication for them when I'm

in remission (shhhhhh, I haven't taken it in quite a while!). My last

seizure, it was baaaaddddd, was in May '98 and the only reason I had

that one was because I had just moved here that January and I was

wanting to leave all the bad stuff behind in Arkansas and when I

started having signs of relapse I ignored them because I wanted it to

just go away and wasn't thrilled about having to try and find a doc

who could help me, you know the fun in that!!! Anyway, I hadn't had

one in 6 1/2 years, 5 1/2 years of that was without any

anticonvulsant

because I had been getting good treatment for relapses. Managing the

lyme also manages my seizures. My neurologist wanted to take me off

my

med when I saw him last month because I have been seizure free for

over 2 years now but I reminded him that my last EEG, last year, was

bad and requested another one first (I was relapsing at the time, go

figure). Even though I'm not taking it anyway right now I still have

it in my hot little hands if I feel like I should take it again, it's

like a security blanket (I didn't tell him I wasn't taking it right

now, I just know how to manage it in relationship to the lyme). If my

EEG is clean and he takes me off of it I lose that blanket. It makes

me nervous but I have a good PCP that will treat my lyme without

question so I need to do without if possible. Anticonvulsants can do

you damage over time, liver and such. Dilantin can actually make you

start looking manly after a number of years, growing facial hair,

getting a husky voice so I'm told. I use Carbatrol, it's a timed

release form of Tegretol. Another thing about going off of it

officially is the fact that I'm not suppose to drive for 6 months

after, even though I still will. Damned if you do and damned if you

don't!!! )

Have you actually had a seizure? You can have seizure activity

without

actually having a full blown seizure. If it is decided that you need

an anticonvulsant I would be very cautious about Dilantin, it messed

me up. I was always dizzy and out of it. I tolerate Carbatrol very

well. I'm sure it depends on the person. I'll explain the use of it

the way my neurologist explained it to me. A seizure is like your

brain being a dry piece of wood and the spikes they see on your EEG

are like sparks that set that wood on fire or give you a seizure.

Using an anticonvulsant is like putting water on that dry wood, you

may still get sparks but the wood doesn't ignite.

I'm really sorry to hear this. That's been the one thing keeping from

flying again and has wrecked havoc on my life. Does your Lyme go into

remission? I wonder if you could find out, like I did, if your

abnormal brain waves correspond to what your Lyme is doing. Mine

certainly do and I think my neurologist is starting to believe that

too. He never said he was sure it was the Lyme but didn't rule it out

either. I think he may be changing his mind. I'm hoping for the best

for you. Please feel free to finger tap me if you have questions. I

MAY be able to help.

Please, everybody wish me luck on my EEG the 19th. If he takes me off

of the Carbatrol (which is keeping me grounded from even flying

privately) and I can stay seizure free by controlling my relapses

maybe I can get my medical back and pick my private flying back up!!!

That would be a gift from God! Lovette, please keep me posted. This

news breaks my heart!!!

All my love and support, Carolyn

> Dear Friends: I just the results of my EEG and it says I have an

> abnormal EEG with paroxyms and " epilepsy process " with frontal

> predominance. Anyone else have this? Can they deny me SS

disability

> now? Isn't this a slam dunk??

> Now for the happy news - can anything be done for this? Or is

this

> just another happy CNS degenerative condition?

>

> Lovette

[Guest guest]

Thanks for the information Carolyn and others. Luckily, I had a tiny

seizure during the EEG, so my EEG was positive. I have had seizures on

an off during Lyme, but didn't really know what to call them. They

usually happen when my brain is overused or when the light hits my

eyes. Then, I start shaking in my head and neck [sometimes in hands],

and I either pass out asleep, or it can last for 4-5 hours. I've told

my doctors this before, but no one has thought it was a big deal.

On Father's Day, I was in a bookstore and tried to read a fairly

large print, easy book, [i haven't been able to read since I got lyme 2

years ago - gives me a headache and shakes], and I started shaking in

the head and neck for about 1 hour, and then fell asleep for 1 hour.

When I awoke, my whole body was shaky, but particularly the head and

neck.

Is this what others are getting? I really didn't know what to call

it because my eyes don't roll back in my head, and no one needs to worry

about me choking on my tongue, but it's apparently now being called

epilepsy with frontal predominance.

Lovette

[Guest guest]

Good luck on your EEG, Carolyn. I wish you all the best.

Hugs,

Joan LI NY

[Guest guest]

I too have had seizures...but mine seem to be different then what I have

heard here...mine I mostly notice when I am extremely tired....and I have

just awaken...I stare clear forward am in a sta te I can't get out

from....hard to explain the only grand mal seizures I have had were on

1-9-99...three in a row lasting about 30 seconds long and 30-60 seconds

inbetween each. I have not seen hair or thin of a grand mal seizure

since..they said it took a good ten minutes to get me to come too. I too

have had one EEG which was normal...but talking to some people who have

Epilepsy, some more friends of mine they said I was probably given an EEG to

soon after my grand mal seizures..which was three days after...and my doctor

told me it takes at least three EEG's to rule out seizures..and he says even

sometimes they don't always catch it with EEG's....lovely huh.....I haven't

had any small seizures that I am aware of for about a couple of

weeks...strangely enough I seem to have more of them in the winter time...go

question that...lol...I sometimes question wether these episodes really are

seizures or some form of my body trying to stay awake.?? I usually remember

that I have had the episodes and sometimes aware of them..I remember them..I

asked my doctor about thi s and he says personally he thinks they are

seizures since some seizures are ones that can be remembered...but after

reading my medical records I am not sure I believe him anymore....time to

find another doctor I can trust...what a big job I have ahead of me.

Alhtough in the medical records he did declare that he felt Lyme Disease

could be a big possibility...What do YOu think??? Should I stay with him.

He said something in the papers about giving the 100 mg doxycycline 2x a day

for 21 days as a starter of a possible long treatment period..weren't his

exact words but somethign like that....wonder what he meant I know what it

sounds like...so then why is he taking so long to do test and other th

ings...I am confused...or as we say in my family

cornfused....(((smile)))...I will try to comment more and be there for

others too thanks all of you for your great wonderful support....Hubby is

doing better about helping me with medical issues...He is even starting to

comment about things and reading the All You Need To Know About Lyme

Disease.

Cyntha Landon

[ ] Re: Seizures

> Lovette,

>

> I am a lymie seizurer. The seizures I have had have been real

> doozies,

> grand mals. Never had them before Lyme. Mine begin in the left

> temporal lobe. I've had clean EEG's and I've had bad EEG's. I take an

> anticonvusant for them and have never had a seizure while taking it.

> I

> have still had bad EEG's while on it. Get this, my EEG's are only bad

> when I relapse. I don't even really need medication for them when I'm

> in remission (shhhhhh, I haven't taken it in quite a while!). My last

> seizure, it was baaaaddddd, was in May '98 and the only reason I had

> that one was because I had just moved here that January and I was

> wanting to leave all the bad stuff behind in Arkansas and when I

> started having signs of relapse I ignored them because I wanted it to

> just go away and wasn't thrilled about having to try and find a doc

> who could help me, you know the fun in that!!! Anyway, I hadn't had

> one in 6 1/2 years, 5 1/2 years of that was without any

> anticonvulsant

> because I had been getting good treatment for relapses. Managing the

> lyme also manages my seizures. My neurologist wanted to take me off

> my

> med when I saw him last month because I have been seizure free for

> over 2 years now but I reminded him that my last EEG, last year, was

> bad and requested another one first (I was relapsing at the time, go

> figure). Even though I'm not taking it anyway right now I still have

> it in my hot little hands if I feel like I should take it again, it's

> like a security blanket (I didn't tell him I wasn't taking it right

> now, I just know how to manage it in relationship to the lyme). If my

> EEG is clean and he takes me off of it I lose that blanket. It makes

> me nervous but I have a good PCP that will treat my lyme without

> question so I need to do without if possible. Anticonvulsants can do

> you damage over time, liver and such. Dilantin can actually make you

> start looking manly after a number of years, growing facial hair,

> getting a husky voice so I'm told. I use Carbatrol, it's a timed

> release form of Tegretol. Another thing about going off of it

> officially is the fact that I'm not suppose to drive for 6 months

> after, even though I still will. Damned if you do and damned if you

> don't!!! )

>

> Have you actually had a seizure? You can have seizure activity

> without

> actually having a full blown seizure. If it is decided that you need

> an anticonvulsant I would be very cautious about Dilantin, it messed

> me up. I was always dizzy and out of it. I tolerate Carbatrol very

> well. I'm sure it depends on the person. I'll explain the use of it

> the way my neurologist explained it to me. A seizure is like your

> brain being a dry piece of wood and the spikes they see on your EEG

> are like sparks that set that wood on fire or give you a seizure.

> Using an anticonvulsant is like putting water on that dry wood, you

> may still get sparks but the wood doesn't ignite.

>

> I'm really sorry to hear this. That's been the one thing keeping from

> flying again and has wrecked havoc on my life. Does your Lyme go into

> remission? I wonder if you could find out, like I did, if your

> abnormal brain waves correspond to what your Lyme is doing. Mine

> certainly do and I think my neurologist is starting to believe that

> too. He never said he was sure it was the Lyme but didn't rule it out

> either. I think he may be changing his mind. I'm hoping for the best

> for you. Please feel free to finger tap me if you have questions. I

> MAY be able to help.

>

> Please, everybody wish me luck on my EEG the 19th. If he takes me off

> of the Carbatrol (which is keeping me grounded from even flying

> privately) and I can stay seizure free by controlling my relapses

> maybe I can get my medical back and pick my private flying back up!!!

> That would be a gift from God! Lovette, please keep me posted. This

> news breaks my heart!!!

>

> All my love and support, Carolyn

>

>

>

>

>

> > Dear Friends: I just the results of my EEG and it says I have an

> > abnormal EEG with paroxyms and " epilepsy process " with frontal

> > predominance. Anyone else have this? Can they deny me SS

> disability

> > now? Isn't this a slam dunk??

> > Now for the happy news - can anything be done for this? Or is

> this

> > just another happy CNS degenerative condition?

> >

> > Lovette

>

>

>

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

> CatalogLink offers hundreds of catalogs for FREE!

> Click here to find the latest and greatest in the

> world of catalogs - check out our featured Picks of the Week

> and also look to enter our $500 catalog shopping spree!

> 1/6068/11/_/484634/_/963037718/

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

>

> Many thanks to our founder and friend, Marta McCoy, for making

what it is today.

>

>

> Easy Reference:

> Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

> -Normalegroups - Switch your subscription to normal

>

> Please send messages not related to Lyme disease to

-Offtopicegroups

>

> Archives can be accessed at lyme-aid

>

> Please visit the chat room at

chat/lyme-aid

>

>

[Guest guest]

Lovette asked for a description of other people's seizures, to

compare

to her own. Here's my description:

A wave-like sensation goes thru my brain, shutting down all systems

(like when a tv station goes off the air). This happens in seconds.

At the same time, the left half of my face goes numb. None of this

lasts very long and I have not lost consciousness (yet). Both times

it happened while I was still on antibiotics (orals).

[Guest guest]

Mine is probably weird. I zone out and my eyes stare forward and eyelids are

wide open. If my husband or someone talks to me many times it will bring me

out of it. Doctor told me what kind of seizure this was called but I can't

remember what he called it...similiar to absent seizures. Just weird is

what I call it.

Cyntha Landon Idaho

[ ] Re: Seizures

> Lovette asked for a description of other people's seizures, to

> compare

> to her own. Here's my description:

>

> A wave-like sensation goes thru my brain, shutting down all systems

> (like when a tv station goes off the air). This happens in seconds.

> At the same time, the left half of my face goes numb. None of this

> lasts very long and I have not lost consciousness (yet). Both times

> it happened while I was still on antibiotics (orals).

>

>

>

>

>

>

> Many thanks to our founder and friend, Marta McCoy, for making

what it is today.

>

>

> Easy Reference:

> Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

> -Normalegroups - Switch your subscription to normal

>

> Please send messages not related to Lyme disease to

-Offtopicegroups

>

> Archives can be accessed at lyme-aid

>

> Please visit the sister site at

> http://clubs./clubs/lymeaid

> This is the primary chat site for .

>

>

[Guest guest]

I've been diagnosed with temporal lobe epilepsy. For my description of what

i experience during a seizure - - The seizures come on suddenly and I all of

a sudden get a feeling as if I am just waking up in the morning - that kind

of disorientation when you first wake up and I'm not sure where I am or

anything - I guess basically you could say that I just space out and i

probably actually become aware of the seizure, after it is over. If the

seizure is triggered by flashing light - as often happens when I am a

passenger in a car when the sunlight flickers through the trees - I cannot

move, become totally out of it, I guess you could say it's as if I lose

consciousness (perhaps that is what happens?) and I zone out - when I start

to become aware again, my breathing and heartbeat are rapid - and it takes

me a while to collect myself and regain my spacial orientation - I don't

know where I am or anything at first and am totally exhausted after the

experience - usually will go to bed - sometimes don't feel right for about

three days after a really bad one. Also, oftentimes people tell me they

have been talking to me for several minutes and asking me if I was alright

and I had no idea anyone was speaking to me! I have been told that I just

stare into space like a zombie when it happens and i respond to no one. Gee,

after typing this up - it sounds really awful. Amazing what a person can get

used to after a while and accept as " normal " ....

Jaqui

[ ] Re: Seizures

> Lovette asked for a description of other people's seizures, to

> compare

> to her own. Here's my description:

>

> A wave-like sensation goes thru my brain, shutting down all systems

> (like when a tv station goes off the air). This happens in seconds.

> At the same time, the left half of my face goes numb. None of this

> lasts very long and I have not lost consciousness (yet). Both times

> it happened while I was still on antibiotics (orals).

>

>

>

>

>

>

> Many thanks to our founder and friend, Marta McCoy, for making

what it is today.

>

>

> Easy Reference:

> Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

> -Normalegroups - Switch your subscription to normal

>

> Please send messages not related to Lyme disease to

-Offtopicegroups

>

> Archives can be accessed at lyme-aid

>

> Please visit the sister site at

> http://clubs./clubs/lymeaid

> This is the primary chat site for .

>

>

>

[Guest guest]

No joke! I get deja vu right before mine hit. Like I'm going back to

the past. Guess that's the only way I can remember the past!!! ;o)

Only had one while awake though, so that's the only thing I have to

go

by. Until the last one mine were all nocturnal.

Carolyn

> Lovette asked for a description of other people's seizures, to

> compare

> to her own. Here's my description:

>

> A wave-like sensation goes thru my brain, shutting down all systems

> (like when a tv station goes off the air). This happens in

seconds.

> At the same time, the left half of my face goes numb. None of this

> lasts very long and I have not lost consciousness (yet). Both

times

> it happened while I was still on antibiotics (orals).

>

>

[Guest guest]

passing this along

Re: [ ] SEIZURES

>

>There is a child on the Vagus Nerve stimulator here at the center, ( by the

>way it can go under pressure) he has had it for two years and has had no

>improvement.

>However now that the HBOT has been added, the child is out of diapers, is

>starting to talk, Smiles and SZ 's have lessen greatly.

>The child was slowly taken off the Keto diet, f all SZ meds.

>the dramatic improvement can only be the introduction of HBOT.

>and agrees the relatives and MDS

>

>

>

>

[Guest guest]

, also vax cause seizures, see www.thinktwice.com and www.909shot.com

>

><<In the view of IAHP seizure activity associated with brain injury in

>children is the result of three factors acting conjointly:

>

>1. Injured brain cells, having survived brain injury, may not yet have fully

>recovered normal physiological activity. Their physiological imbalances lead

>more readily to situations of functional stress and to generation of distress

>signals which, because of inadequate cortical-cerebellar control, may release

>the reflex defense mechanism leading to seizures.

>

[Guest guest]

Hi ,

There are DOZENS of metabolic\mitochondrial disorders that are

inborn and can cause seizures. Have you checked out this site:

http://www.carnitor.com.

Also have you been in touch with mark Schauss whose child had

intractable seizures? Drug -resistent seizures are also an indication

that there may be a cardiovascular cause:

http://www.medtronic.com/reveal/naspe.html

Zoe

[Guest guest]

Carnitor intro page:

The basics.

Carnitine is a substance the body requires for energy production.

Without enough carnitine, a person's cells can't break down fatty

acids or remove toxic wastes. This condition is called carnitine

deficiency.

Some people are born with a metabolic disorder which leads to

carnitine deficiency. Others develop carnitine deficiency as a result

of dietary restrictions or as a result of some medical conditions or

treatments. Carnitine deficiency may be associated with dialysis,

total parenteral nutrition and treatments for epilepsy.

The only drug indicated for the treatment of carnitine deficiency is

Carnitor® (levocarnitine).

http://www.carnitor.com/consumer_home.html

Adverse events reported with Carnitor use include nausea, vomiting,

body odor, gastritis and seizures. There are no reported

contraindications or warnings.

You can get complete prescribing information at Carnitor Injection

P.I. or Carnitor Tablets and Oral Solution P.I.

Home | Carnitine Deficiency | Carnitor | Resources

[Guest guest]

In a message dated 3/16/01 12:45:53 AM Eastern Standard Time,

Zoe_176@... writes:

<<

There are DOZENS of metabolic\mitochondrial disorders that are

inborn and can cause seizures. Have you checked out this site:

http://www.carnitor.com.

Also have you been in touch with mark Schauss whose child had

intractable seizures? Drug -resistant seizures are also an indication

that there may be a cardiovascular cause:

http://www.medtronic.com/reveal/naspe.html

Zoe

>>

Yes, I am so well aware of the many metabolic disorders that it could be.

Karly has taken carnitor but, didn't improve anything.

NO, I don't know who Mark Schauss is. I will check out the sites.

[Guest guest]

In a message dated 3/16/01 6:52:14 AM Eastern Standard Time,

fcunsrial1@... writes:

<<

Sorry to hear about your little daughter. Nothing more painful than seeing a

little one suffer.

Was there any trauma? At birth? What is the etiology? Does she have grand

mals

or...Do they occur at night, daytime? >>

THANKS . No trauma that I know of at birth. She was a planned C

section. However I did notice her moving strangely while we were waiting for

the epidural to take affect. I kick myself now because I didn't say

anything. But, there were two doctors standing there and could see her moving

too. Now I am wondering if I should have had O2 while we were waiting to get

numb. BUT, hind sight is always 20/20

She has tonic clonics daily (Grand Mal) She has them anytime during the day

or night. There is no rhyme nor reason. We have had many tests so far all

come up negitive.

Thanks

[Guest guest]

In a message dated 3/16/01 7:50:27 AM Eastern Standard Time,

howard@... writes:

<<

Have you tried D.M.G. (CHECK OUT www.kirkmanlabs.com ), >>

THANK you I will check it out. I just received DMG in the mail yesterday.

[Guest guest]

Hi ,

Sorry to hear about your little daughter. Nothing more painful than seeing a

little one suffer.

Was there any trauma? At birth? What is the etiology? Does she have grand mals

or...Do they occur at night, daytime?

Thanks

Cuns Rial

Dillr@... wrote:

> I wish I could figure out how to help my daughter reduce her seizures. We

> have been struggling with this for 4 years. (since she was three weeks old)

> Drugs never helped. The keto diet only helped a little. I despise going to

> doctors anymore because their only solution is give her drugs and that only

> drugs her up and doesn't reduce seizures :-(

>

>

>

>

> _

>

>

[Guest guest]

Have you tried D.M.G. (CHECK OUT www.kirkmanlabs.com ), taurine amino acid

and the masking (rebreathing expelled air many times a day under very strict

supervision). An overview of our son is attached for your interest.

Regards,

& Savage.

[ ] Seizures

> I wish I could figure out how to help my daughter reduce her seizures. We

> have been struggling with this for 4 years. (since she was three weeks

old)

> Drugs never helped. The keto diet only helped a little. I despise going

to

> doctors anymore because their only solution is give her drugs and that

only

> drugs her up and doesn't reduce seizures :-(

>

>

>

>

> _

>

>

[Guest guest]

Hi ,

If they occur at both daytime and nighttime, she may have both temporal

and

frontal discharges. If it was trauma and it is diffused it is reasonable

to think

of oxygen starvation.

If you assume that, then masking should be a must for her. A word about

masking.

Get the masks from the Institutes, or at least one so that you can make

copies.

Do not fabricate your own contraption or trust those who tell you to

breath in a

paper bag. The Institutes have studied the size of the mask the

duration,

intensity and frequency necessary to elicit good responses and prevent

further

injury. Once you have the mask, visit your respiratory therapist and ask

him/her

to witness a one minute application, followed by five minutes rest and

so on for

at least one hour and make sure there are no signs of distress. I they

are,

reduce the application time. She may cough a lot at the beginning but

that is ok.

Whatever you do with masking make sure you get the blessings of a

medical

professional. Once you get clearance, start with 12 a day for a week and

increase

by 2 a day per week until yo get to 50 a day or so.

If the problem is respiration, you'll notice improvement in a host of

things such

as cognitive, mobility, speech, etc.

Another issue is tissue or cellular respiration. DMG may help but start

SLOWLY

and use sublingual. Divide the minimum recommended dose by four and

increase

slowly per week if you see improvement. Try not to feed her for 1/2 or

so

following the DMG. DMG does not help everybody. CoQ10 also helps in

tissue

respiration and again start with 5 mg a day or so and increase to 10-20

slowly.

Taking antioxidants such as Lipoic, Vinpocetine etc. is a great idea but

check

with you physician first.

Should she improve with the masking I suggest you enroll her in the IAHP

and get

her into the CO2 program.

Another alternative to research is the Hyperbaric chamber. Some people

have

benefited a great deal form this therapy, others are susceptible and may

aggravate the seizures. Whatever you do get it done by a licensed

physician and

get a SPECT before and after the first treatment to see if there is

increase in

activity.

, I'd visit the BRAINMASTER site in the Net and learn about

Neurofeedback.

Kids love it, it works, is inexpensive and the only drawback is that YOU

will

have to become an expert in a hurry. You may elect to try a local

certified

professional. Visit the EEG Spectrum site and get a list in your state.

Some

people go to the professional for 10-20 sessions to learn enough to

continue at

home using an inexpensive($1000 bucks) yet reliable setup. I have been

using the

BRAINMASTER with my son and have seen good results not only in

diminution of

seizures( more rapid recovery and less frequent) but also improved

verbal and

motor skills.

Warm regards and pls keep me posted

Dillr@... wrote:

> In a message dated 3/16/01 6:52:14 AM Eastern Standard Time,

> fcunsrial1@... writes:

>

> <<

> Sorry to hear about your little daughter. Nothing more painful than seeing a

> little one suffer.

> Was there any trauma? At birth? What is the etiology? Does she have grand

> mals

> or...Do they occur at night, daytime? >>

>

> THANKS . No trauma that I know of at birth. She was a planned C

> section. However I did notice her moving strangely while we were waiting for

> the epidural to take affect. I kick myself now because I didn't say

> anything. But, there were two doctors standing there and could see her moving

> too. Now I am wondering if I should have had O2 while we were waiting to get

> numb. BUT, hind sight is always 20/20

> She has tonic clonics daily (Grand Mal) She has them anytime during the day

> or night. There is no rhyme nor reason. We have had many tests so far all

> come up negitive.

> Thanks

>

>

>

> _

>

>

[Guest guest]

Thank you for posting. Part of the file did not come through. Could

you resend it in text format? Thanks.

Zoe

> Have you tried D.M.G. (CHECK OUT www.kirkmanlabs.com ), taurine

amino acid

> and the masking (rebreathing expelled air many times a day under

very strict

> supervision). An overview of our son is attached for your interest.

>

> Regards,

>

> & Savage.

> [ ] Seizures

>

>

> > I wish I could figure out how to help my daughter reduce her

seizures. We

> > have been struggling with this for 4 years. (since she was three

weeks

> old)

> > Drugs never helped. The keto diet only helped a little. I

despise going

> to

> > doctors anymore because their only solution is give her drugs and

that

> only

> > drugs her up and doesn't reduce seizures :-(

> >

> >

> >

> >

> > _

> >

> >

[Guest guest]

As requested here is the file.

Regards,

& Savage.

AN OVERVIEW OF ADRIAN SAVAGE'S PROGRESS. (FEB 2001)

1. WAS: From birth D.O.B. 19/9/95, (and possibly in the womb, as

commented numerous times about the strange repetitive movements, late in the

pregnancy) had serve uncontrollable myoclonic epilepsy - up to 40+

seizures per day of ½ to 3 min duration.

NOW: is now drug free (no anti-convulsants since June 1998), with the

occasional mild seizure (many so mild, that the casual observer is often not

aware he is having one - mouth pouting, slight rolling of the eyes,

involuntary swallowing or smiling, slight flicking of the head, shoulder or

one hand - an average of 4 to 5 per week), which don't leave him bombed out

afterwards, and he is obviously aware of what is happening around him during

them. At no stage when was on any combination of anti-convulsant

medications, did he have any better control of seizure activity, as compared

to their control since taking him off drugs, (both in terms of number of

seizures over any given time frame and the intensity of those seizures) with

the added noticeable benefit of no side affects. (Esp. more alert and aware

of his surroundings)

BENEFITS: *The intensive rehabilitation program we did for 14 months through

the Institutes for the Development of Human Potential (Glenn Doman program -

Australian contact, Max Britt P.O Box 3 Healesville, , 3777 - Ph 059

623084) - especially the " masking " - rebreathing expelled air for set time,

many times a day.

*D.M.G. - dimethyl glycine supplement - the active component of pan agamic

acid (vitamin B15)

*Taurine amino acid supplement

*Diet - particularly no salt, no sugar and regulated fluid intake

2. WAS: For the first 3-4 months of his life, was fed through a

naos-gastric tube. To avoid infections from food getting on his lungs, all

fluids had to be thickened, due to his poor swallowing. He was never able

to successfully breast feed, because he could not open his mouth properly.

He struggled with a constant " rattling " in the back of his throat, due to

the inability to deal with his secretions, which required sucking out with a

machine.

NOW: has been drinking unthickened fluids, for over 2 years (still

from a bottle, working on cup use), and eats lumpy mashed food, making some

attempt to bite or chew, with encouragement. The " rattle " /secretion problem

has completely dried up.

BENEFITS: *getting him off anti-convulsants

*D.M.G. (as above) - noticed dramatic improvement in 3-4 days when we first

put him on it.

3. WAS: Floppy " rag doll " lying " frog legged " on the floor, unable to lift

his head up (until 15 months) or roll, and often only wakeful 2 to 4 hours a

day.

NOW: Greatly improved muscle tone and weight bearing ability. (We still

notice fluctuations during a day and from day to day, although they are mild

compared to pre supplementation with D.M.G., and despite any fluctuations,

he is always steadily improving in overall strength, especially in the upper

body) He can roll from back to front and front to back (often gets arms

stuck), and when very active, often moves around the floor on his back. He

weight bears well on his legs, and is able to stand for extended periods of

time with limited support for balance. He will step out and with

encouragement and some assistance, walk across a room, on good days. He

will involve and sometimes initiate meaningful interaction and games with

others. He can reach and hit things, but not reach and grasp; although he

will tightly grasp something placed in his hand. If placed on the floor in

a seated position, he is able to remain upright for extended periods, by

supporting himself with his hands on the floor in front of his body, between

his legs. He now independently moves around the floor, in this way, pushing

any pillows placed around him for protection, out of the way. For this

reason, we have brought him a football foam protection helmet, to avoid

injury. When seated, he often plays a game of leaning right back and

pulling himself upright at the last minute, before he falls backwards. Sits

on a little stool for extended periods of time, often with out support.

BENEFITS: *D.M.G. supplement

*Co Enzyme Q10 and activated Vitamin B3 supplements - was on these before

discovering D.M.G. While not as effective, they did assist with his energy

levels.

*Diet - high fat / low carbohydrate / low acid forming (i.e. Alkaline

forming foods) / all raw vegan diet and freshly juiced vegetable juices for

fluids.

*The intensive rehabilitation program definitely laid a good foundation to

this progress.

WAS: Struggled with chronic constipation, with bleeding, often requiring

suppositories.

NOW: Has very few digestive problems.

BENEFITS: Change of diet.

# Aside from secondary illnesses, the removal of the D.M.G. supplementation

and a major set back after his 18 month immunization, (when he lost 3 to 4

clear words of speech, which he has never regained - the beginnings of word

forming and a greater vocal range has been a recent progression) has

always been steadily improving, especially since coming off

anti-convulsants.

AN OVERVIEW OF ADRIAN'S DIET & SUPPLEMENTS.

Diet: *Fruit - bananas, avocados, pears, apples, kiwi fruit, peaches,

mangoes, paw paws, strawberries, nectarines, apricots, plums, custard apple,

rock melon, water melon

* " Nut Butter " - the following soaked overnight in water in the fridge and

crushed: almonds, lima beans, dates, sunflower seeds, pumpkin seeds

(pepita), sultans, raisins, figs, dried apricots, and prunes.

*Tofu, tahini (crushed sesame seed paste)

(On the few occasions we have given him cooked animal based products - eg

egg custard - we have noticed a return of the " rattles " in the back of the

throat and a swelling up of the old sty scares on his eyelids. had

very bad sties on his eyes when younger, until we introduced this diet.)

Fluids: Mainly fresh, raw, vegetable juices, esp. carrot with small amounts

of celery, cucumber, beetroot, parsley, or spinach. (Occasionally, 100%

bottled fruit juice, watered down)

Supplements: *Barley green or alfalfa powder - heaped teaspoon per day

(broad range alkalising nutrient)

*Selenium yeast powder - 1/3 teaspoon per day (broad range nutrient & anti

oxidant)

*Grain based acidophilus/bifidus concentrate powder - ½ teaspoon per day

*Calcium Ascorbate - 1/4 teaspoon per day (non acid vitamin C anti oxidant)

*Calcium supplement - equivalent to 300mg per day (assist bone density)

*Vitamin B12 - 250mcg per day (because of vegan diet)

*Linseed/flaxseed oil - approx 5 ml per day (essential fatty acids esp.

omega 3)

*Taurine amino acid - 500 to 750 mg per day (assists with epilepsy and aids

liver detox)

*D.M.G. (N, N, -Dimethylglycins HCL 50 mgm/ml) - 5 to 7 ml per day. Of all

the supplements we have ever used with , this is the one that has

shown the most obvious, sustained, benefits. The first time we put him on

it, with in 3 to 4 days, we saw a marked improvement in his epilepsy, energy

levels, alertness, and a complete " drying up " of the rattling at the back of

the throat. We did a trial of taking him off it, and with in 10 days,

noticed a return or marked increase in all these things, even reverting back

to not opening his mouth to feed, as was the case in his early months of

life.

Trust you find this of interest. There is much more we could share,

concerning why we do what we are doing. Not sure about the " science " of it

all, however the positive results are a testimony to the fact that any

progression of the condition, is gradually being reversed. Though still a

profoundly disabled boy, has good quality of life, and really loves

his life. Though the journey for us has been an extremely difficult one,

is a joy to be around, and we thank God for the blessing he has been

to our lives.

[ ] Seizures

> >

> >

> > > I wish I could figure out how to help my daughter reduce her

> seizures. We

> > > have been struggling with this for 4 years. (since she was three

> weeks

> > old)

> > > Drugs never helped. The keto diet only helped a little. I

> despise going

> > to

> > > doctors anymore because their only solution is give her drugs and

> that

> > only

> > > drugs her up and doesn't reduce seizures :-(

> > >

> > >

> > >

> > >

> > > _

> > >

> > >

[Guest guest]

In a message dated 4/6/2001 7:50:46 AM Eastern Daylight Time, roe325@... writes:

The lyme started these stupid seizures and I think most lymies have them.

my seizures are not grand mal, in fact you would never guess I am having one. They occur deep within my brain and cause strange smells and exhaustion and numbness in my face and really bad migraines

Dear Roe and Cyntha,

I used to have Lyme-seizures, both small ones and Grand Mals.

Since being on IV antibiotics I have not had any grand mals & right now can't remember if I've been having the smaller ones. I do get frequent killer migraines. Between the meds I take & the IV ABX, I sleep better now than I can remember in many years.

Yes, I worry about what will happen when I have to stop the IV's, but I'll deal with that then.

Roe, I wonder if the IV ABX might help you even more than the anti-seizure meds. I mean take BOTH together, please don't think I'm suggesting you stop the anti-seizure meds. My doctors insist that I continue on anti-seizure meds even tho I'm no longer having grand mals, so I suppose it's just too risky to stop.

Please let us know if IV ABX help you too.

Hugs, a in NJ