Re: Fw: Brain waves, Medicine, and vitamins

[Guest guest]

Dear Lou,

I know how you feel. Although I just take a Centrum as far as vitamins go, I

take plenty of Rx medications 3 times a day. I'm not sure how many pills you

need to take, but I know how it is keeping track of pills, like, " did I take

my pills this morning? " because that is something I can't double up on so I

need to be really careful. I also know how difficult it can be to swallow

many pills at one time or even one after the other not to mention making

sure you take the right pills at the right time (like with or without food).

What I did was set up a schedule and post it on my fridge. You can divide

yours up into categories, vitamins taken w/food, vitamins taken without,

vitamins not to be taken with acid/cider. If I were you I would take my

vitamins that need to be taken with food during breakfast or lunch

(whichever is your biggest meal), the vitamins taken without food could be

taken between lunch and dinner (during a break if you work) and the vitamins

that you need to take which cannot be taken with cider/acids can be taken at

dinnertime (provided it's o.k. to take those with food) if you cannot take

them with food then I would take them at bedtime. Then I would just go ahead

and combine my pills (if that's o.k.) with the vitamins you take at

different times of the day.

I hope this helps you and didn't sound too confusing. Sometimes I have a

tendency to ramble. I love to give advice. When I was growing up I used to

read Dear Abby/Ann Landers (depending on the paper we had) and I wanted to

grow up and write an advice column. I always seem to find people to give

advice to, at the nursery buying plants, at the beauty shop, the Dr.'s

office, you name it...

I'm so glad you're doing better and feeling happy. I really think a positive

mental attitude can make a great difference in how you feel physically and

mentally. Yes, one day at a time works well for me. I have also started in

recovery with ACOA (Adult Children of Alcoholics). I have received much

support from that group as well.

How long have you had epilepsy? I had my first grand mal seizure when I was

18, but was having aura's way before that. I would hear the helicopter in my

head and then start hitting my ear with my hand to make the sound go away,

it always worked. One day I was at work and the feeling came upon me again,

the aura, and curiosity got the best of me and the next thing I know it

feels like I'm having a stroke and I'm literally being thrown out of the

chair I was sitting in. Luckily one of the guys I worked with had a best

friend who had epilepsy so he took care of me until the paramedics arrived.

Now when I feel the aura coming along I take it very seriously and try to

abort it in the process, most of the time I have been successful.

Well I think I've talked your eyes off, HAHA!!! Write me back, I enjoy

talking to you too!!

Peace and Love,

Tricia

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>Dear Tricia

>

>I have been doing better the past few days. I'm really happy. One day at

>a time feels good. I am still not taking my vitamns the way I should.

>It's hard taking all these pills because so many of them need to be

>taken on an empty stomack and then the others that need to be taken

>with food. And then some that can not be taken with acids such as the

>Cider and the priviced for acid reflux. What a pain in the butt. Any

>ideas how I can find a way to take all my pills and vitamins. I might

>call the Dr.

>

> God Bless,

> Lou

>

>P.S.

> Please write back, I like talking to you.

>

>

>

>

>_

>

>

[Guest guest]

Dear ,

I started having aura's when I was about 16. I didn't know what they were,

but the came in the form of sound and disorientation. I would hear the sound

of a helicopter and it was like my brain totally focussed on this sound.

People would continue to speak to me or around me but I could not comprehend

what they were saying. I would stare at them or just stare in general, then

I would hit the side of my head with my hand (really hard at times) and that

will usually make it go away, if not I would get in my " I'm going to have a

seizure position " and pray to God there would be someone around to help me.

I have my neck put in the position of giving C.P.R. to open the airway and

that has made such a difference in how long my seizures last and how I feel

coming out of one.

The book I was telling you about has been such a help to me. I really hope

you can find it. I found mine at & Noble. There are so few books on

epilepsy. I was astounded. However I did want to share some of the methods

in the book that have worked for different people to arrest or abort

seizures during the aura:

1) I say to myself " keep calm, keep calm "

2) I sniff jasmine

3) tickling

4) eating candy (I would not recommend this due to choking)

Basically what they are trying to get at is recognizing your aura (there is

an entire chapter on this also). So if your aura is a funny smell like the

burning smell you described, they suggest finding a vial of aromatic oil

(look in a Hallmark shop) or a health food store. When you smell the burning

take the vial out of your pocket and smell the liquid. They suggest buying a

strong scent. You are just refocusing the pattern your brain is going in.

It's quite remarkable. I used to think I was " special " and then found out

many others are able to do this as well. I'm happy about that though. I wish

the world was seizure free. I know the examples above may sound a little

bizarre. I would never put anything in my mouth during an aura, but that is

suggested for people who have aura's in the form of taste.

It was good to hear from you, let me know how you're doing and if this

method worked for you.

Have a great day!!

Tricia

Re: [ ] Fw: Brain waves,

>> >> Medicine, and vitamins

>> >>

>> >>

>> >> >Can you describe your auras? I don't think I " ve

>> >> ever had an aura. The

>> >> only

>> >> >way I can describe my grand mal seizures is one

>> >> minute I'm fine and the

>> >> next

>> >> >minute I'm in the ER with wet pants, a cut in my

>> >> tongue and someone leaning

>> >> >over me asking if I know where I am. Of course,

>> >> I've only had this happen

>> >> 5

>> >> >times in my life, but 3 of them are in the last

>> 6

>> >> months, with 2 on the

>> >> same

>> >> >day. Before this it wasn't normal for me even

>> to

>> >> have 2 in the same

>> >> decade,

>> >> >let alone the same day. For just about all of

>> them

>> >> I've either had

>> >> >bronchitis or had just been getting over

>> bronchitis

>> >> though.

>> >> >

>> >> >Jeanne

>> >> >>>

[Guest guest]

counteracting what your brain is doing actually makes

a real simplistic kind of sense. i bet it does work.

certainly cant hurt to try, and feeling like i feel

this morning, like a truck ran me over and then backed

over me a couple times, i'm pretty open to trying new

things.

it seems pretty sensible that if you're having an

olfactory aura, which is honestly a hallucination,

sniffing something else thats real and stronger than

the phantom smell, could in effect be like hitting the

reset button. and it cant hurt to try.

i wonder what i'd do about the other thing though,

that i have most often, which is just total

disorientation. i wouldnt have a clue how to refocus

that.

you're right, there arent a lot of books on epilepsy,

but i'll look for that one....do you want to tell me

again what it is? i deleted the mail it was in. oops.

--- Tricia Strain <callie2@...> wrote:

> Dear ,

>

> I started having aura's when I was about 16. I

> didn't know what they were,

> but the came in the form of sound and

> disorientation. I would hear the sound

> of a helicopter and it was like my brain totally

> focussed on this sound.

> People would continue to speak to me or around me

> but I could not comprehend

> what they were saying. I would stare at them or just

> stare in general, then

> I would hit the side of my head with my hand (really

> hard at times) and that

> will usually make it go away, if not I would get in

> my " I'm going to have a

> seizure position " and pray to God there would be

> someone around to help me.

> I have my neck put in the position of giving C.P.R.

> to open the airway and

> that has made such a difference in how long my

> seizures last and how I feel

> coming out of one.

>

> The book I was telling you about has been such a

> help to me. I really hope

> you can find it. I found mine at & Noble.

> There are so few books on

> epilepsy. I was astounded. However I did want to

> share some of the methods

> in the book that have worked for different people to

> arrest or abort

> seizures during the aura:

>

> 1) I say to myself " keep calm, keep calm "

> 2) I sniff jasmine

> 3) tickling

> 4) eating candy (I would not recommend this due to

> choking)

>

> Basically what they are trying to get at is

> recognizing your aura (there is

> an entire chapter on this also). So if your aura is

> a funny smell like the

> burning smell you described, they suggest finding a

> vial of aromatic oil

> (look in a Hallmark shop) or a health food store.

> When you smell the burning

> take the vial out of your pocket and smell the

> liquid. They suggest buying a

> strong scent. You are just refocusing the pattern

> your brain is going in.

> It's quite remarkable. I used to think I was

> " special " and then found out

> many others are able to do this as well. I'm happy

> about that though. I wish

> the world was seizure free. I know the examples

> above may sound a little

> bizarre. I would never put anything in my mouth

> during an aura, but that is

> suggested for people who have aura's in the form of

> taste.

>

> It was good to hear from you, let me know how you're

> doing and if this

> method worked for you.

>

> Have a great day!!

>

> Tricia

> Re: [ ] Fw: Brain waves,

> >> >> Medicine, and vitamins

> >> >>

> >> >>

> >> >> >Can you describe your auras? I don't think

> I " ve

> >> >> ever had an aura. The

> >> >> only

> >> >> >way I can describe my grand mal seizures is

> one

> >> >> minute I'm fine and the

> >> >> next

> >> >> >minute I'm in the ER with wet pants, a cut in

> my

> >> >> tongue and someone leaning

> >> >> >over me asking if I know where I am. Of

> course,

> >> >> I've only had this happen

> >> >> 5

> >> >> >times in my life, but 3 of them are in the

> last

> >> 6

> >> >> months, with 2 on the

> >> >> same

> >> >> >day. Before this it wasn't normal for me

> even

> >> to

> >> >> have 2 in the same

> >> >> decade,

> >> >> >let alone the same day. For just about all

> of

> >> them

> >> >> I've either had

> >> >> >bronchitis or had just been getting over

> >> bronchitis

> >> >> though.

> >> >> >

> >> >> >Jeanne

> >> >> >>>

[Guest guest]

Dear Tricia

The apple cider pills are to be taken three times a day . Plus you

need to wait a half an hour before you can eat . Then eat and take your

main meds plus the B viatiam .Wait in between breakfeast and lunch and

so on and restart again with cider pills .See what Imean by beening

confussed with all these pills .ahahahah.Thank God today has gone well

so far. My grandaughter is visiting with her great Me/ere sorry not to

great in spelling french names or words.

Hope all is well with you today.

God Bless

Lou

[Guest guest]

Dear Tricia

Please explain about VNS .I don't know anything about this. What is

it . Hope all is well

with you.

Please write back soon

God Bless

Lou

[Guest guest]

Dear

I to have a Aura and its a great thing. Because it helps me to get

out of harms way also. My children are all grown. They are a big help to

me I'm lucky about this .Do not feel bad you have seizures .Look at it

this way on my days I'm doing well I'm grateful to God most sincerely My

aura is hard to describe. All I know is I get a funny fuzzy disoriented

feeling then I go Into my seizure I've been like this since I've been

25yrs old not much older then you Please keep your chin up on your goods

..Then let God take care of the not so good days . Hope today is one of

the good days

write back soon,

God Bless,

Lou

P.S.

My children are 17,18, 18, 20, 23, My grand children are 4, 1, 3

months.

[Guest guest]

you didnt direct this question at me, but i'm going to

jump in anyway, because i have a vns implant.

what it is is a little computer controlled device that

sends an electric shock along the vagus nerve, into

the brain. its like a pacemaker for the brain instead

of the heart. its implanted under the skin in my chest

and the lead wire clamps to the nerve in my neck. i

dont feel the device or the wire, but i do feel the

impulses. its variable for the individual and it takes

some tweaking to get it set for optimal performance.

mines set to go off (send an impulse)every three

minutes, for 15 seconds, kind of a long duration and

high frequency. i have the amplitude written down

somewhere, i dont remember what it is. the impulses

dont hurt, but they make me cough sometimes, and shut

my voice off, so for that 15 seconds i cant make a

sound. (my mom likes this).

i have a magnet i can use to shut it off, if i need to

be on the phone and need my voice or for some other

reason dont want it to fire. the magnet can also be

used to add extra stim if i have an aura...that way i

can use it to abort a seizure.

it works really really well for me, i've gone from

literally hundreds of seizures a day to less than 40.

it still sounds like a lot, but most of them are

little absences. the really big knock me on my butt

seizures are down to 1 or 2 a day,sometimes even 1

every couple of days, usually at night, and even

though to some people that sounds bad, its a whole lot

better than it was.

there's a website where you can go to get

informational material sent to you, and get updated on

the devices and i think there's also a message board.

www.cyberonics.com

i've had a lot of people tell me these things dont

work...all i can say is, true. for a lot of people

they dont, but its making an enormous difference for

me.

take it easy.

--- Lou_42@... wrote:

> Dear Tricia

>

> Please explain about VNS .I don't know anything

> about this. What is

> it . Hope all is well

> with you.

>

> Please write back soon

>

> God Bless

> Lou

>

>

>

>

>

>

>

> _

>

>

[Guest guest]

thanks for the encouraging words

i dont feel bad though, about this. its just something

about me, ive always had it. its just one of my

challenges, most of the time

yeah there are times, like this morning, when i hate

it with an absolutely unimagineable passion, but most

of the time i just get on with life, and do the things

i like to do.

no big deal

--- Lou_42@... wrote:

> Dear

>

> I to have a Aura and its a great thing. Because

> it helps me to get

> out of harms way also. My children are all grown.

> They are a big help to

> me I'm lucky about this .Do not feel bad you have

> seizures .Look at it

> this way on my days I'm doing well I'm grateful to

> God most sincerely My

> aura is hard to describe. All I know is I get a

> funny fuzzy disoriented

> feeling then I go Into my seizure I've been like

> this since I've been

> 25yrs old not much older then you Please keep your

> chin up on your goods

> .Then let God take care of the not so good days .

> Hope today is one of

> the good days

>

>

>

> write back soon,

>

> God Bless,

> Lou

>

> P.S.

> My children are 17,18, 18, 20, 23, My grand

> children are 4, 1, 3

> months.

>

>

>

>

> _

>

>

[Guest guest]

Dear ,

The name of the book is Epilepsy: A New Approach, by Adrienne &

Reiter. Please let me know if you can't find it. Perhaps I could mail you

one or at least give you the address of where you could order it from. That

is just how great I think this book is. It has taught me things that my Dr.

didn't discuss with me. Things that I felt were important, but my

neurologist sees me for free, my mom worked for him for 13 yrs..So I can't

complain too much. They can't cover everything. I learned that when I read

this book. Just to give you another example:

You should eliminate commonly used products that contain aluminum, such as:

1) Bufferin and other buffered painkillers

2) Deodorants that are labeled as " super-dry " or " extra-dry " (aluminum is a

drying agent)

3) Rolaids (Tums are o.k. though)

4) Table Salt, Baking powders and self-rising flours, they suggest buying

these products at a

health food store

As you can see there are so many things we use in everyday life that can

effect our well being as an epileptic.

As far as your disorientation is concerned, can you describe it for me? It

may help me give you a few ideas to help you hit your " reset button " . I

liked that term, hope you don't mind if I use it. When I feel disoriented

it's as though I can't think. My entire brain is focused somewhere else and

I feel a GREAT sense of fear. I begin to take deep breaths, I sit down and

call my dogs (my husband works all the time and is never here), the dogs

will lick my face. Have you ever had an 80 lb. dog lick your face? Let me

tell you, you will know. The aura then goes away. I think it's all about

refocusing and it may take a while to learn. I think like having the aura

itself, being able to arrest the seizure is a " gift " . Not every epileptic

has the aura, but if you do you're lucky. On the other hand you usually feel

the incredible fear before hand and may end up taking anxiety medication the

rest of your life, but that's o.k. I feel good, I feel lucky!!

Re: [ ] Fw: Brain waves,

>> >> >> Medicine, and vitamins

>> >> >>

>> >> >>

>> >> >> >Can you describe your auras? I don't think

>> I " ve

>> >> >> ever had an aura. The

>> >> >> only

>> >> >> >way I can describe my grand mal seizures is

>> one

>> >> >> minute I'm fine and the

>> >> >> next

>> >> >> >minute I'm in the ER with wet pants, a cut in

>> my

>> >> >> tongue and someone leaning

>> >> >> >over me asking if I know where I am. Of

>> course,

>> >> >> I've only had this happen

>> >> >> 5

>> >> >> >times in my life, but 3 of them are in the

>> last

>> >> 6

>> >> >> months, with 2 on the

>> >> >> same

>> >> >> >day. Before this it wasn't normal for me

>> even

>> >> to

>> >> >> have 2 in the same

>> >> >> decade,

>> >> >> >let alone the same day. For just about all

>> of

>> >> them

>> >> >> I've either had

>> >> >> >bronchitis or had just been getting over

>> >> bronchitis

>> >> >> though.

>> >> >> >

>> >> >> >Jeanne

>> >> >> >>>

[Guest guest]

i'll see if amazon has that book. if they dont, i

might be asking you for an address to order it

i know there are a zillion things that can play a

part..im really careful about what i eat, and stuff

like that...but its hard. everything is 90% chemical

it seems like, right down to the air.

how to describe that disoriented feeling....its really

difficult, but....i can see, but nothin looks

right...if i had to describe how it looked wrong i

couldnt, but it just doesnt look right. i can feel but

things seem very distant and dim, i know where i am

but i dont feel like i belong there. if anyone comes

up and talks to me when i'm like that, nine times out

of ten i can hear their words but cant make sense of

them, or if i can, when i try to anwer i cant get out

anything coherent. its just massive confusion and

everything looks funny.

but confusion is the wrong word too, because i'm still

alert and i still know whats going on. i can think...i

can act. i dont think ive ever gotten scared during

it...i seem to get very detached. i just go lie down

somewhere or if i can reach my magnet i usually try to

head off the seizure.

the only time i can remember being afraid was when i

had a seizure start and for whatever reason stayed

alert for the first few seconds of it. normally i have

an aura..and then im waking up. i miss all of the

neurological pyrotechnics. i dont feel anything till

afterward. this particular time i was aware for a lot

longer than i was happy about, and i hope that never

happens again!

i dont know how, other than using my implant, i could

reset something like that..its so vague and all

encompassing. i have tried concentrating on something,

tried talking to people, tried doing some kind of

coordinated task, but so far that sort of thing has

not worked.

ideas?

--- Tricia Strain <callie2@...> wrote:

> Dear ,

>

> The name of the book is Epilepsy: A New Approach, by

> Adrienne &

> Reiter. Please let me know if you can't find it.

> Perhaps I could mail you

> one or at least give you the address of where you

> could order it from. That

> is just how great I think this book is. It has

> taught me things that my Dr.

> didn't discuss with me. Things that I felt were

> important, but my

> neurologist sees me for free, my mom worked for him

> for 13 yrs..So I can't

> complain too much. They can't cover everything. I

> learned that when I read

> this book. Just to give you another example:

>

> You should eliminate commonly used products that

> contain aluminum, such as:

>

> 1) Bufferin and other buffered painkillers

> 2) Deodorants that are labeled as " super-dry " or

> " extra-dry " (aluminum is a

> drying agent)

> 3) Rolaids (Tums are o.k. though)

> 4) Table Salt, Baking powders and self-rising

> flours, they suggest buying

> these products at a

> health food store

>

> As you can see there are so many things we use in

> everyday life that can

> effect our well being as an epileptic.

>

> As far as your disorientation is concerned, can you

> describe it for me? It

> may help me give you a few ideas to help you hit

> your " reset button " . I

> liked that term, hope you don't mind if I use it.

> When I feel disoriented

> it's as though I can't think. My entire brain is

> focused somewhere else and

> I feel a GREAT sense of fear. I begin to take deep

> breaths, I sit down and

> call my dogs (my husband works all the time and is

> never here), the dogs

> will lick my face. Have you ever had an 80 lb. dog

> lick your face? Let me

> tell you, you will know. The aura then goes away. I

> think it's all about

> refocusing and it may take a while to learn. I think

> like having the aura

> itself, being able to arrest the seizure is a

> " gift " . Not every epileptic

> has the aura, but if you do you're lucky. On the

> other hand you usually feel

> the incredible fear before hand and may end up

> taking anxiety medication the

> rest of your life, but that's o.k. I feel good, I

> feel lucky!!

> Re: [ ] Fw: Brain

> waves,

> >> >> >> Medicine, and vitamins

> >> >> >>

> >> >> >>

> >> >> >> >Can you describe your auras? I don't

> think

> >> I " ve

> >> >> >> ever had an aura. The

> >> >> >> only

> >> >> >> >way I can describe my grand mal seizures

> is

> >> one

> >> >> >> minute I'm fine and the

> >> >> >> next

> >> >> >> >minute I'm in the ER with wet pants, a cut

> in

> >> my

> >> >> >> tongue and someone leaning

> >> >> >> >over me asking if I know where I am. Of

> >> course,

> >> >> >> I've only had this happen

> >> >> >> 5

> >> >> >> >times in my life, but 3 of them are in the

> >> last

> >> >> 6

> >> >> >> months, with 2 on the

> >> >> >> same

> >> >> >> >day. Before this it wasn't normal for me

> >> even

> >> >> to

> >> >> >> have 2 in the same

> >> >> >> decade,

> >> >> >> >let alone the same day. For just about

> all

> >> of

> >> >> them

> >> >> >> I've either had

> >> >> >> >bronchitis or had just been getting over

> >> >> bronchitis

> >> >> >> though.

> >> >> >> >

> >> >> >> >Jeanne

> >> >> >> >>>

[Guest guest]

Dear

I thought today was a good day .But I try to be my kids mom and

friend but I guess It doesn't work .Your young so I think you would

understand .I am not surpose to get to upset because I have seizures .

Today I was doing good until I said something to my sons girlfriend

about a conversation and said the wrong thing I just said to you to keep

your chin up but mine is so low it is almost touching the floor ha ha

you know what I mean .Is your mom real close to you my kids are my

worldI.to me . I'm sorry but at time I hate hate hate my seizures to

deith sorry for some of my spelling just a bad afternoon. you sound like

a very smart young man I hope your day is doing better then mine

write back need input on what I talked to you about

God Bless

Lou

[Guest guest]

everybody says the wrong thing once in a while, dont

let it get you too down.

dare to be human, right?

it works to be your kids friend! my dad is my best

friend. put it this way, even if he wasnt my dad, i'd

still hang out with him

but you're not gonna get it right all the time, nobody

ever does. if we did, we'd be robots.

when i get down..when i'm like..hating life and

feeling like its just not fair, or scarier, like i'm

just too tired to keep on fighting this thing (that

really does scare me, when i get dark like that), i

found out that this very very simple, almost silly

thing really works. i take off my shoes and go outside

barefoot, and feel the earth under my feet, and smell

the air and look at the sky and really SEE the earth

i'm living on..and am a part of. i..reconnect,

reaffirm...and when you look at beauty that big, and

realize you're part of it, a lot of the everyday

hassles kind of fade away. it works for me..and for

sooooo many people who've tried it. try it..when you

get down...get your shoes off and go outside....and

just BE for a few minutes. it'll make you feel better.

what you asked about my mom being close to

us...well....she is to everyone but me, and there are

a lot of us

my family is really tight, but i'm not as close to my

mom as the rest of them. she stresses a lot about me

and so its kind of a constant battle to be allowed to

live my life. she's pretty overprotective, and i guess

i can understand why, but i cant live in a bubble. so

....yeah we're close but we clash.

just in case you ever wonder, my family reads mom,

dad, jeff, lori, justyn (deceased), jayson, me, zack,

cyri, devyn. lol. LOT OF US!!!!!

we go.....34,34, (22), 22, 17, 16, 12,10

two sets of twins.

--- Lou_42@... wrote:

> Dear

>

> I thought today was a good day .But I try to

> be my kids mom and

> friend but I guess It doesn't work .Your young so I

> think you would

> understand .I am not surpose to get to upset because

> I have seizures .

> Today I was doing good until I said something to my

> sons girlfriend

> about a conversation and said the wrong thing I just

> said to you to keep

> your chin up but mine is so low it is almost

> touching the floor ha ha

> you know what I mean .Is your mom real close to you

> my kids are my

> worldI.to me . I'm sorry but at time I hate hate

> hate my seizures to

> deith sorry for some of my spelling just a bad

> afternoon. you sound like

> a very smart young man I hope your day is doing

> better then mine

>

> write back need input on what I talked to you about

>

>

> God Bless

> Lou

>

>

>

>

>

>

>

>

>

>

>

>

> _

>

>

[Guest guest]

Are they only for folks whose seizures cannot be controlled by meds?

Jeanne

Re: [ ] Fw: Brain waves,

>>>> Medicine, and vitamins

>>>>

>>>>

>>>> >Can you describe your auras? I don't think I " ve

>>>> ever had an aura. The

>>>> only

>>>> >way I can describe my grand mal seizures is one

>>>> minute I'm fine and the

>>>> next

>>>> >minute I'm in the ER with wet pants, a cut in my

>>>> tongue and someone leaning

>>>> >over me asking if I know where I am. Of course,

>>>> I've only had this happen

>>>> 5

>>>> >times in my life, but 3 of them are in the last 6

>>>> months, with 2 on the

>>>> same

>>>> >day. Before this it wasn't normal for me even to

>>>> have 2 in the same

>>>> decade,

>>>> >let alone the same day. For just about all of them

>>>> I've either had

>>>> >bronchitis or had just been getting over bronchitis

>>>> though.

>>>> >

>>>> >Jeanne

>>>> >>>

[Guest guest]

I know how you feel about hating your seizures. Mine have resurfaced after

11 years seizure free and my daughter is only 6 months old. I really feel

that my husbands family feels that I'm incompetant to care for her because

their afraid I'll have a seizure and if my marriage ever ended I'm afraid

they'd try to take her away from me.

Jeanne

*sniff*

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>Dear

>

> I thought today was a good day .But I try to be my kids mom and

>friend but I guess It doesn't work .Your young so I think you would

>understand .I am not surpose to get to upset because I have seizures .

>Today I was doing good until I said something to my sons girlfriend

>about a conversation and said the wrong thing I just said to you to keep

>your chin up but mine is so low it is almost touching the floor ha ha

>you know what I mean .Is your mom real close to you my kids are my

>worldI.to me . I'm sorry but at time I hate hate hate my seizures to

>deith sorry for some of my spelling just a bad afternoon. you sound like

>a very smart young man I hope your day is doing better then mine

>

>write back need input on what I talked to you about

>

>

>God Bless

> Lou

>

>

>

>

>

>

>

>

>

>

>

>

>_

>

>

[Guest guest]

Dear Jeanne

I know all about what your saying .my first husband did take my

children .It was very hard at first because myfirst husband said I'm

quite the actrice .so his mother raised my three .thank God for my new

husband we have our moments don/t get me wrong .he's to protictive over

me .sometimes it drives me nuts . well I have to go now my little

grandughter needs me

I hope some day we will both be seizure freeeeee

God Bless

Lou

ps not a great speller

[Guest guest]

Dear

Thank you, you're a sweet young man .I think we helped each other

today. Your mom is a lot like my present husband with our kids. He's

very protective, but it drives me crazy some times because he goes

overboard. I liked your suggestion about going outside and just

experiencing my surroundings. The next time it gets tough inside, that

idea will help me cope. Thank you!

I really enjoyed chatting with you today and it really did help me

feel a bit better. Thank you so much, again. Hope all is well with

you, tonight.

God bless,

Lou

[Guest guest]

Dear Lou,

I see explained about the VNS, he's really nice, huh!!

I give up on your pill situation!!LOL!! How many do you take in one day? I

thought I took a lot!! I'm glad you've had a good day. Let's hope tomorrow

will be good as well!! I'm sure seeing your granddaughter put a big smile on

your face!!

Love,

Tricia

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>Dear Tricia

>

> The apple cider pills are to be taken three times a day . Plus you

>need to wait a half an hour before you can eat . Then eat and take your

>main meds plus the B viatiam .Wait in between breakfeast and lunch and

>so on and restart again with cider pills .See what Imean by beening

>confussed with all these pills .ahahahah.Thank God today has gone well

>so far. My grandaughter is visiting with her great Me/ere sorry not to

>great in spelling french names or words.

>

>

>Hope all is well with you today.

>

>

>

>God Bless

> Lou

>

>

>

>

>

>

>

>_

>

>

[Guest guest]

Dear ,

Thanks so much for describing the VNS. I have heard of them, but did not

know much about them. I'm so glad it's working for you!! It's a pretty

interesting device. We are so lucky to be living in this time of technology.

When my dad went to school (a long time ago) he had an epileptic boy sit

behind him. They finally had him taken out of school because the town people

were convinced he was possessed by the devil. He never had any friends.

Isn't that sad? When my dad found out I had epilepsy he was really sad that

he didn't try to be friends with this boy.

I will do some research on the aura of disorientation. I do research for a

group via computer called the Epilepsy Connection, they are based out of CA.

They may have some info on this so I will check first.

I too have stayed alert for several minutes during a grand mal seizure. I

have felt the stiffening of my body and my legs convulsing. I think that's

why I get so scared during my aura's. Just knowing what could come scares me

so much. I must say you are very brave. I don't know how you do it. I'm so

glad the VNS has helped you!!

I loved what you said about going outside barefoot and taking in nature. We

have an earth pond in our backyard with some koi, rainbow fish and gold

fish. It's nighttime and there are about 1000 frogs also. I hope I can sleep

tonight!!

I must say you have a huge family!! My mom doesn't think having epilepsy is

a big deal. When her husband (my-step-father) had a seizure though, LOOK

OUT!!!, I'm surprised she didn't have him put in intensive care!! His was

from alcohol withdrawal (he's an alcoholic), mine is because I have a cyst

on the stem of my brain. My mom is in total denial. I have a great

mother-in-law though!! I'm glad you and your dad are so close. I had a

friend that got married and her husband had his father as the best man. I

had never seen that before, but he said his dad was his best friend. I

cried!!

I hope you have a good seizure-free day tomorrow!!

Tricia

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>you didnt direct this question at me, but i'm going to

>jump in anyway, because i have a vns implant.

>

>what it is is a little computer controlled device that

>sends an electric shock along the vagus nerve, into

>the brain. its like a pacemaker for the brain instead

>of the heart. its implanted under the skin in my chest

>and the lead wire clamps to the nerve in my neck. i

>dont feel the device or the wire, but i do feel the

>impulses. its variable for the individual and it takes

>some tweaking to get it set for optimal performance.

>mines set to go off (send an impulse)every three

>minutes, for 15 seconds, kind of a long duration and

>high frequency. i have the amplitude written down

>somewhere, i dont remember what it is. the impulses

>dont hurt, but they make me cough sometimes, and shut

>my voice off, so for that 15 seconds i cant make a

>sound. (my mom likes this).

>i have a magnet i can use to shut it off, if i need to

>be on the phone and need my voice or for some other

>reason dont want it to fire. the magnet can also be

>used to add extra stim if i have an aura...that way i

>can use it to abort a seizure.

>

>it works really really well for me, i've gone from

>literally hundreds of seizures a day to less than 40.

>it still sounds like a lot, but most of them are

>little absences. the really big knock me on my butt

>seizures are down to 1 or 2 a day,sometimes even 1

>every couple of days, usually at night, and even

>though to some people that sounds bad, its a whole lot

>better than it was.

>

>there's a website where you can go to get

>informational material sent to you, and get updated on

>the devices and i think there's also a message board.

>www.cyberonics.com

>

>i've had a lot of people tell me these things dont

>work...all i can say is, true. for a lot of people

>they dont, but its making an enormous difference for

>me.

>

>take it easy.

>--- Lou_42@... wrote:

>> Dear Tricia

>>

>> Please explain about VNS .I don't know anything

>> about this. What is

>> it . Hope all is well

>> with you.

>>

>> Please write back soon

>>

>> God Bless

>> Lou

>>

>>

>>

>>

>>

>>

>

>>

>> _

>>

>>

[Guest guest]

no, i think they're an option for anyone...

--- jeashe <jeashe@...> wrote:

> Are they only for folks whose seizures cannot be

> controlled by meds?

>

> Jeanne

> Re: [ ] Fw: Brain waves,

> >>>> Medicine, and vitamins

> >>>>

> >>>>

> >>>> >Can you describe your auras? I don't think

> I " ve

> >>>> ever had an aura. The

> >>>> only

> >>>> >way I can describe my grand mal seizures is

> one

> >>>> minute I'm fine and the

> >>>> next

> >>>> >minute I'm in the ER with wet pants, a cut in

> my

> >>>> tongue and someone leaning

> >>>> >over me asking if I know where I am. Of

> course,

> >>>> I've only had this happen

> >>>> 5

> >>>> >times in my life, but 3 of them are in the

> last 6

> >>>> months, with 2 on the

> >>>> same

> >>>> >day. Before this it wasn't normal for me even

> to

> >>>> have 2 in the same

> >>>> decade,

> >>>> >let alone the same day. For just about all of

> them

> >>>> I've either had

> >>>> >bronchitis or had just been getting over

> bronchitis

> >>>> though.

> >>>> >

> >>>> >Jeanne

> >>>> >>>

[Guest guest]

Instead of medication?

Jeanne

Re: [ ] Fw: Brain waves,

>> >>>> Medicine, and vitamins

>> >>>>

>> >>>>

>> >>>> >Can you describe your auras? I don't think

>> I " ve

>> >>>> ever had an aura. The

>> >>>> only

>> >>>> >way I can describe my grand mal seizures is

>> one

>> >>>> minute I'm fine and the

>> >>>> next

>> >>>> >minute I'm in the ER with wet pants, a cut in

>> my

>> >>>> tongue and someone leaning

>> >>>> >over me asking if I know where I am. Of

>> course,

>> >>>> I've only had this happen

>> >>>> 5

>> >>>> >times in my life, but 3 of them are in the

>> last 6

>> >>>> months, with 2 on the

>> >>>> same

>> >>>> >day. Before this it wasn't normal for me even

>> to

>> >>>> have 2 in the same

>> >>>> decade,

>> >>>> >let alone the same day. For just about all of

>> them

>> >>>> I've either had

>> >>>> >bronchitis or had just been getting over

>> bronchitis

>> >>>> though.

>> >>>> >

>> >>>> >Jeanne

>> >>>> >>>

[Guest guest]

I know that I might be getting too personal here, but I'm sure you can

understand why I'm asking. How often were your seizures when your first

husband was able to get custody of the children? Feel free to e-mail me

privately if you'd rather.

Jeanne

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>Dear Jeanne

>

> I know all about what your saying .my first husband did take my

>children .It was very hard at first because myfirst husband said I'm

>quite the actrice .so his mother raised my three .thank God for my new

>husband we have our moments don/t get me wrong .he's to protictive over

>me .sometimes it drives me nuts . well I have to go now my little

>grandughter needs me

>

>

>

>I hope some day we will both be seizure freeeeee

>

>

>God Bless

> Lou

>

>

>ps not a great speller

>

>

>

>

>_

>

>

[Guest guest]

Oh Jeanne,

Who knew after being seizure free for so long that they would come back, 11

yrs??!! Has your Dr. ever put you on Diamox? I may have mentioned it before,

but it has done wonders for me. It is a diuretic specifically for epilepsy

taken before your menstrual cycle. It works with your body the same way the

ketogenic diet works. When I first started dating my husband I had been 5

yrs. seizure free. I told him the chances of me having another seizure were

very slim. I had another grand mal the first year we were married and from

then on. Do you experience an aura before your seizures? What type of

seizures do you have? Cheer up, I know lots of moms with epilepsy. God will

look after you and your baby.

Love,

Tricia

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>

>

>>Dear

>>

>> I thought today was a good day .But I try to be my kids mom and

>>friend but I guess It doesn't work .Your young so I think you would

>>understand .I am not surpose to get to upset because I have seizures .

>>Today I was doing good until I said something to my sons girlfriend

>>about a conversation and said the wrong thing I just said to you to keep

>>your chin up but mine is so low it is almost touching the floor ha ha

>>you know what I mean .Is your mom real close to you my kids are my

>>worldI.to me . I'm sorry but at time I hate hate hate my seizures to

>>deith sorry for some of my spelling just a bad afternoon. you sound like

>>a very smart young man I hope your day is doing better then mine

>>

>>write back need input on what I talked to you about

>>

>>

>>God Bless

>> Lou

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>_

>>

>>

[Guest guest]

Originally I was diagnosed with petit mal seizures (at 18) after having a

grand mal. My last neurologist tells me now that he thinks their temporal

lobe seizures. The worst part is that if I had just stayed on the Depakote

and left well enough alone I probably wouldn't be in this predicament right

now. I was obsessed with finding a med that was safer to be on in case I

got pregnant again. *shaking my head*

Jeanne

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>>

>>

>>>Dear

>>>

>>> I thought today was a good day .But I try to be my kids mom and

>>>friend but I guess It doesn't work .Your young so I think you would

>>>understand .I am not surpose to get to upset because I have seizures .

>>>Today I was doing good until I said something to my sons girlfriend

>>>about a conversation and said the wrong thing I just said to you to keep

>>>your chin up but mine is so low it is almost touching the floor ha ha

>>>you know what I mean .Is your mom real close to you my kids are my

>>>worldI.to me . I'm sorry but at time I hate hate hate my seizures to

>>>deith sorry for some of my spelling just a bad afternoon. you sound like

>>>a very smart young man I hope your day is doing better then mine

>>>

>>>write back need input on what I talked to you about

>>>

>>>

>>>God Bless

>>> Lou

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>_

>>>

>>>

[Guest guest]

Dear Jeanne,

Everyone chooses a different path. I chose not to have children for several

reasons. However, would getting back on Depakote be an option for you now?

I know you may want more children, but I guess you have to way the pro's and

con's of that decision with your husband. I know that when I have my niece

here I freak out if I have an aura (she's 3 now), but I'm very involved in

her life. She has her own room here, when my sister told me she was pregnant

I went out the next day and bought everything needed for my nursery. My

husband surprised me with the Classic Pooh crib set after I told him it was

too expensive. I'm lucky my sister lets me be so involved in her life. I

will pray for you Jeanne. Have you discussed your fears with your husband?

how does he feel about all of this. Hope I'm not getting too personal.

Love,

Tricia

Re: [ ] Fw: Brain waves, Medicine, and vitamins

>>>

>>>

>>>>Dear

>>>>

>>>> I thought today was a good day .But I try to be my kids mom and

>>>>friend but I guess It doesn't work .Your young so I think you would

>>>>understand .I am not surpose to get to upset because I have seizures .

>>>>Today I was doing good until I said something to my sons girlfriend

>>>>about a conversation and said the wrong thing I just said to you to keep

>>>>your chin up but mine is so low it is almost touching the floor ha ha

>>>>you know what I mean .Is your mom real close to you my kids are my

>>>>worldI.to me . I'm sorry but at time I hate hate hate my seizures to

>>>>deith sorry for some of my spelling just a bad afternoon. you sound like

>>>>a very smart young man I hope your day is doing better then mine

>>>>

>>>>write back need input on what I talked to you about

>>>>

>>>>

>>>>God Bless

>>>> Lou

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>

>>>>_

>>>>

>>>>

[Guest guest]

along with medication.

i still take depakene even though i have the implant.

i think most people use it as an adjunct to

medication, not a replacement.

--- jeashe <jeashe@...> wrote:

> Instead of medication?

>

> Jeanne

> Re: [ ] Fw: Brain

> waves,

> >> >>>> Medicine, and vitamins

> >> >>>>

> >> >>>>

> >> >>>> >Can you describe your auras? I don't think

> >> I " ve

> >> >>>> ever had an aura. The

> >> >>>> only

> >> >>>> >way I can describe my grand mal seizures is

> >> one

> >> >>>> minute I'm fine and the

> >> >>>> next

> >> >>>> >minute I'm in the ER with wet pants, a cut

> in

> >> my

> >> >>>> tongue and someone leaning

> >> >>>> >over me asking if I know where I am. Of

> >> course,

> >> >>>> I've only had this happen

> >> >>>> 5

> >> >>>> >times in my life, but 3 of them are in the

> >> last 6

> >> >>>> months, with 2 on the

> >> >>>> same

> >> >>>> >day. Before this it wasn't normal for me

> even

> >> to

> >> >>>> have 2 in the same

> >> >>>> decade,

> >> >>>> >let alone the same day. For just about all

> of

> >> them

> >> >>>> I've either had

> >> >>>> >bronchitis or had just been getting over

> >> bronchitis

> >> >>>> though.

> >> >>>> >

> >> >>>> >Jeanne

> >> >>>> >>>