Re: Re: Cardiac Seizures

[Guest guest]

Strange as my diagnosees were I was diagnosed with Epilepsy and Long QT

Syndrome at the same time. Epilepsy causeses seizures, as many of you know.

Long QT Syndrome causes torsades de points - ventrical fibrillation, which

if not stopped by a defibrillator shock, can cause a seizure due to lack of

oxygen to the brain. I am sure that the latter happened to me more than

once - and it is the reason for my epilepsy (which was POSTIVILY diagnosed

through an EEG, I suffer 3+ epileptic seizures a day). *sigh* On of these

days they will stop the seizures, and the shocks - Hopefully soon. I've got

too much life left to live.

>From: " P. Pulasky " <PULASKY1@...>

>Reply-

>

>Subject: Re: cardiac seizures

>Date: Wed, 28 Feb 2001 08:56:07 -0800

>

>Sue:

> First of all, a person having a 'cardiac seizure' isn't aware they've

>had a seizure. To them, it's just a brief episode of unconsciousness; if

>they were standing up at that time, they would have fallen to the floor.

>Actually, they might not know what happened, but would only know they

>found themselves on the floor and must have fallen. Only someone

>watching them at the time would be aware of what had really happened.

> A cardiac seizure is a seizure that occurs at the time of a cardiac

>episode...extreme tachycardia, v fib, etc. It resembles an epileptic

>seizure, hopefully only lasting a few seconds. In August of 1998, my

>husband had several of these seizures in his primary care physician's

>office (doctor of internal medicine); because they resembled epileptic

>seizures, the office didn't call the paramedics until he'd had four of

>them..they waited an hour to call; by the time the paramedics arrived,

>my husband had " coded " . In September of that year, he received his

>AICD.

> He hadn't had any seizures like this since then. This December he had

>tachycardia and atrial fibrillations; at that time, his cardiologist put

>him on Amiodarone, which had some really bad side effects. In spite of

>the side effects, he was left on the medication. On February 9th, he

>suffered a seizure, and the Amiodarone was increased. By February 14th,

>he was collapsing, couldn't walk, so the doctor took him abruptly off

>the Amiodarone that day. On February 25th, he had three seizures in one

>day, so was put back on Amiodarone (BIG DOSAGES!). No seizures since

>then.

> I was just curious to know if anyone else had suffered seizures in

>conjunction with cardiac problems. My husband's primary care physician

>had never heard of such a thing. I've never run across it in any

>research I've done on the 'Net either. I thought I recalled, however,

>that someone on this list had mentioned that their initial cardiac

>episode involved a seizure. I'd really like to hear from that person,

>and anyone else with any info on this. Or could someone refer me to a

>website with info?

> Thanks much. PatP

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

>Sue Wrote:

> > I'm clueless as to what a 'cardiac seizure' is. Can you help me out

>here?

> Sue

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Pat Wrote:

> > > Can anyone tell me if " cardiac seizures " are common after an AICD has

> > > been implanted? My husband's AICD was implanted in September, 1998;

> > > he's had four of these episodes in the last three weeks. No need to

> > > ask

> > > his cardiologist for this info, as he's no help. Each time he's had

> > > one

> > > is at the time he was zapped....he doesn't know which came first...the

> > >

> > > zap or the seizure. Thanks for any help.

_________________________________________________________________

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[Guest guest]

Pat P., I think im doing this correctly, lets try it anyways

Pat , I have had (what I would call Fainting or siesure) right into the dogs food dish, I was on the boat by myself sitting at the table , next thing I knew I was looking at my dogs tounge and teeth as she was (as I thought) trying to eat me, I was helpless to move all I could do was lay there, all I could do was hear and see what was going on around me, the dogs tounge looked two foot long and her teeth were surely about the same size. I have no idea even today as to how long I layed there,no idea how I even got there(in the dogs dish), I don't even remember how it all started, but having my dog eat my face is not something one looks forward to in life, however, the wife (Gail) tells me that is why we got her (dog that is), im affraid that if something happens to me my dog will not allow anyone near me, she seems to stay within two feet of me at all times , except for when im trying to sleep then she (dog) is pressed right up against my back.

My Doc. said that my passing out had nothing to do with my (ICD ?) pacemaker / defribilator implant, he thinks maybe I had the Flu or something, time will tell as I have only have had it since last Nov. 2000, it was changed (recalibrated) from 100 to 60 or 70 im not sure id have to ask the wife as my memory is bad anymore.

thought I would respond to you however it may not be what you are looking for, but it might be good reading material ;-) I preferr to think of it as the ADVENTURES of my life part # 6. Dave

Re: cardiac seizures>Date: Wed, 28 Feb 2001 08:56:07 -0800>>Sue:> First of all, a person having a 'cardiac seizure' isn't aware they've>had a seizure. To them, it's just a brief episode of unconsciousness; if>they were standing up at that time, they would have fallen to the floor.>Actually, they might not know what happened, but would only know they>found themselves on the floor and must have fallen. Only someone>watching them at the time would be aware of what had really happened.> A cardiac seizure is a seizure that occurs at the time of a cardiac>episode...extreme tachycardia, v fib, etc. It resembles an epileptic>seizure, hopefully only lasting a few seconds. In August of 1998, my>husband had several of these seizures in his primary care physician's>office (doctor of internal medicine); because they resembled epileptic>seizures, the office didn't call the paramedics until he'd had four of>them..they waited an hour to call; by the time the paramedics arrived,>my husband had "coded". In September of that year, he received his>AICD.> He hadn't had any seizures like this since then. This December he had>tachycardia and atrial fibrillations; at that time, his cardiologist put>him on Amiodarone, which had some really bad side effects. In spite of>the side effects, he was left on the medication. On February 9th, he>suffered a seizure, and the Amiodarone was increased. By February 14th,>he was collapsing, couldn't walk, so the doctor took him abruptly off>the Amiodarone that day. On February 25th, he had three seizures in one>day, so was put back on Amiodarone (BIG DOSAGES!). No seizures since>then.> I was just curious to know if anyone else had suffered seizures in>conjunction with cardiac problems. My husband's primary care physician>had never heard of such a thing. I've never run across it in any>research I've done on the 'Net either. I thought I recalled, however,>that someone on this list had mentioned that their initial cardiac>episode involved a seizure. I'd really like to hear from that person,>and anyone else with any info on this. Or could someone refer me to a>website with info?> Thanks much. PatP>> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~>>Sue Wrote:> > I'm clueless as to what a 'cardiac seizure' is. Can you help me out>here?> Sue> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~>Pat Wrote:> > > Can anyone tell me if "cardiac seizures" are common after an AICD has> > > been implanted? My husband's AICD was implanted in September, 1998;> > > he's had four of these episodes in the last three weeks. No need to> > > ask> > > his cardiologist for this info, as he's no help. Each time he's had> > > one> > > is at the time he was zapped....he doesn't know which came first...the> > >> > > zap or the seizure. Thanks for any help._________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.comPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Hi Reb,

I usually just read the e-mails but I wanted to respond to yours tonight. It

sounds

like you are going through a very hard time. I had sudden death April of 99

and I have an ICD. I've been shocked. (that's no fun). I hope you have a

caring friend or relative that can help while you recover. Maybe the doc can

wait on your surgery a day or two. I had that done. You will feel so much

better after you heal. A Mom with 2 little children will need help healing. I

will pray everything goes well for your family. My son watched in the ER

while they brought me out of a flat line. I wished he never saw that. Hey the

best part, I'm still hear and doing OK. They thought I had a problem with my

lead 2 or 3 times. So far everything is OK. I will say alittle pray for your

husband tonight.

God Bless,

Sissy

[Guest guest]

Pat (and the rest of you who responded),

Thanks for educating me on cardiac seizures. Pat, i just sent an

e-mail to my

sister to ask about her knowledge of these events. She's a manager of a

thoracic

ICU (which does heart transplants, also, so they deal with some serious

stuff).

I'll let you know whatever feedback she sends me.

I do know a bit about the other kind of seizures, caused by various

things like

brain damage, drug abuse, no-known-cause. What you describe is the same

thing... no memory from the patient of the event, but they know they had

one

because they wake up on the floor. Sometimes having wet or pooped them-

selves too. My husband did that when they defibbed him in the ER last

month.

His arms and legs also flung all over the place during the v-fib part,

and his

breathing was horrible... like heavy deranged snoring and gagging and

gasping

for breath. 'Agonal breathing', my sister called that. I wonder if this

was a true

seizure, or just a 'normal' thing that happens when you v-fib? She says

it's normal.

(If you can call dying normal, sigh.) I've seen people have grand mals,

but they

did not breathe like that. It's something i will never forget.

I'm off work tomorrow and Friday. I'll do a web search for you and see

what

i can find out, for both of us. Will that help a little bit?

Sue

[Guest guest]

Sue,

You sound like a wonderful person. My husband (49) had a cardiac arrest 6

weeks ago and we thought he had seizured as well. they told us it was normal

for someone who was dying to look that way. We are still trying to come to

terms with this whole thing. Today, we were told, he needs to go in Monday

and be tested again - the, whatever it's called, defibillator?, isn't giving

the doc the right readings. Possible have to realign the lead on Tuesday -

wouldn't be a problem except I have to have a full hysterectomy on Friday and

we have 2 kids 9 and 13 that are totally freaked that both Mom and Dad are

going to be hospitalized .... and neither of us will be able to drive for a

while. Sorry, I don't usually tell my life story to strangers but, I am so

upset? tense? stressed out? about all of this and it helps to write it down.

Cor and I have been married for 25 years (well, 25 legal in May and 3 living

together first) and have never been through a crisis like this. Like you, I

feel the sight of my husband dying and fighting is something I'll never

forget. Thank you for just being there

Reb

Sue Owens wrote:

> Pat (and the rest of you who responded),

>

> Thanks for educating me on cardiac seizures. Pat, i just sent an

> e-mail to my

> sister to ask about her knowledge of these events. She's a manager of a

> thoracic

> ICU (which does heart transplants, also, so they deal with some serious

> stuff).

> I'll let you know whatever feedback she sends me.

>

> I do know a bit about the other kind of seizures, caused by various

> things like

> brain damage, drug abuse, no-known-cause. What you describe is the same

> thing... no memory from the patient of the event, but they know they had

> one

> because they wake up on the floor. Sometimes having wet or pooped them-

> selves too. My husband did that when they defibbed him in the ER last

> month.

> His arms and legs also flung all over the place during the v-fib part,

> and his

> breathing was horrible... like heavy deranged snoring and gagging and

> gasping

> for breath. 'Agonal breathing', my sister called that. I wonder if this

> was a true

> seizure, or just a 'normal' thing that happens when you v-fib? She says

> it's normal.

> (If you can call dying normal, sigh.) I've seen people have grand mals,

> but they

> did not breathe like that. It's something i will never forget.

> I'm off work tomorrow and Friday. I'll do a web search for you and see

> what

> i can find out, for both of us. Will that help a little bit?

> Sue

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

[Guest guest]

Pat....I had an AICD implaned less than 2 mo. ago. The surgeon threw a

booklet on the bed and gave me no idea what the " shock " would feel like....7

days later I had 4 successive shocks. I was told had I not had the ICD, my

survival would've been null and void. They did not tell me anything about

" cardiac seizures " . I am very angry that patient education if rarely

supplied. I thought the shock would be like a little static electricity.

Needless to say when it shocked me and I was thrown to the floor, it took me

till the next one to realize it came from my chest. I have talked to my

cardio Doc and I am in the process of putting together literature and a phone

list for present and future " implantees: in my area. It is a shame that

people must go thru this without really knowing what to expect. Best of luck

to your husband. Stephi

[Guest guest]

Hi, Reb.... cute name by the way.... 'Reb Skelton'! I'm old enuff to

remember

the Red Skelton comic guy.

> weeks ago and we thought he had seizured as well. they told us it was

> normal

> for someone who was dying to look that way. We are still trying to

> come to

> terms with this whole thing.

It DOES look very much like a seizure. The person is literally

fighting for their life,

even tho it's done unconsciously. My husband still has thick scars on

the tops of his

feet from his first MI, fighting against the paramedics and cutting his

feet in the ambul-

ance.

Coming to terms. Takes a long time. It's so hard, isn't it? Was this

your husband's

first indication of heart problems? I hope it gets easier for you to

deal with. So far,

I'm coping okay myself. But it's hard, a lot of the time.

> we have 2 kids 9 and 13 that are totally freaked that both Mom and Dad

> are

> going to be hospitalized .... and neither of us will be able to drive

> for a

> while. Sorry, I don't usually tell my life story to strangers but, I

> am so

> upset? tense? stressed out? about all of this and it helps to write it

> down.

Hey, it's okay. Any way you can have your doc put off your surgery

till things are clear with your

hubby? Not to put down your own health problems or anything, pls. don't

take it that way.

I'll light a candle for you, if that helps. Pls. let us know how it's

going with you. This is a neat

list. People here really DO care. I've seen the other responses to your

post.

Sue

[Guest guest]

I wish I could put it off - but I have been in alot of pain, the doc is

worried about the size and we are all worried that it is not just a cyst. I

am not even going to examine that one.... we'll just get the job done and

hope we can cope! Today is a better day than yesterday - thanks to all of

you. You are wonderful people - loving and caring, God Bless you all.

Reb

Sue Owens wrote:

> Hi, Reb.... cute name by the way.... 'Reb Skelton'! I'm old enuff to

> remember

> the Red Skelton comic guy.

>

> > weeks ago and we thought he had seizured as well. they told us it was

> > normal

> > for someone who was dying to look that way. We are still trying to

> > come to

> > terms with this whole thing.

>

> It DOES look very much like a seizure. The person is literally

> fighting for their life,

> even tho it's done unconsciously. My husband still has thick scars on

> the tops of his

> feet from his first MI, fighting against the paramedics and cutting his

> feet in the ambul-

> ance.

> Coming to terms. Takes a long time. It's so hard, isn't it? Was this

> your husband's

> first indication of heart problems? I hope it gets easier for you to

> deal with. So far,

> I'm coping okay myself. But it's hard, a lot of the time.

>

> > we have 2 kids 9 and 13 that are totally freaked that both Mom and Dad

> > are

> > going to be hospitalized .... and neither of us will be able to drive

> > for a

> > while. Sorry, I don't usually tell my life story to strangers but, I

> > am so

> > upset? tense? stressed out? about all of this and it helps to write it

> > down.

>

> Hey, it's okay. Any way you can have your doc put off your surgery

> till things are clear with your

> hubby? Not to put down your own health problems or anything, pls. don't

> take it that way.

> I'll light a candle for you, if that helps. Pls. let us know how it's

> going with you. This is a neat

> list. People here really DO care. I've seen the other responses to your

> post.

> Sue

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

[Guest guest]

I too wish I had a better understanding before I got shocked - good luck on getting your lists together!

Re: Re: cardiac seizures

Pat....I had an AICD implaned less than 2 mo. ago. The surgeon threw a booklet on the bed and gave me no idea what the "shock" would feel like....7 days later I had 4 successive shocks. I was told had I not had the ICD, my survival would've been null and void. They did not tell me anything about "cardiac seizures". I am very angry that patient education if rarely supplied. I thought the shock would be like a little static electricity. Needless to say when it shocked me and I was thrown to the floor, it took me till the next one to realize it came from my chest. I have talked to my cardio Doc and I am in the process of putting together literature and a phone list for present and future "implantees: in my area. It is a shame that people must go thru this without really knowing what to expect. Best of luck to your husband. StephiPlease visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

Dear Pat,

I must reply to your e-mail. Please don't worry so much. Your husband's time

on earth is not up yet. I truly believe God watches over all of us. This

includes the caretakers. My husband will worry and I remind him I didn't die

the first time or any other time. It's very possible your husband and I will

out live my husband and you. The forgetting isn't so bad. We don't remember

what we forgot. LOL. Please take care and live your life the fullest you can

everyday. I'm sure your husband would want you to.

God Bless

Sissy

[Guest guest]

What a wonderful project Stephi and I as one of the six year veterans would

have appreciated the truth. Love, Jeannie

Re: Re: cardiac seizures

> Pat....I had an AICD implaned less than 2 mo. ago. The surgeon threw a

> booklet on the bed and gave me no idea what the " shock " would feel

like....7

> days later I had 4 successive shocks. I was told had I not had the ICD,

my

> survival would've been null and void. They did not tell me anything about

> " cardiac seizures " . I am very angry that patient education if rarely

> supplied. I thought the shock would be like a little static electricity.

> Needless to say when it shocked me and I was thrown to the floor, it took

me

> till the next one to realize it came from my chest. I have talked to my

> cardio Doc and I am in the process of putting together literature and a

phone

> list for present and future " implantees: in my area. It is a shame that

> people must go thru this without really knowing what to expect. Best of

luck

> to your husband. Stephi

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

[Guest guest]

Hi, Pat....

> is to caregivers: how have you managed to cope with the tendency to

> smother the AICD recipient with too much attention? I had managed to

> avoid that for the first two years of his AICD, but since his current

> (no pun intended) problems, I find myself worried sick, and I have

> been

> trying to ward off pacing and ZAP episodes by babying too much.

I was horrible that way after Rich got his in Jan. Would call him

several times/day from work. Was

afraid to even GO to work, but had to because the people around here

think they need to eat every

single day.... spoiled brats! Heh heh. Would ask him a zillion times/day

'how are ya feeling?' 'You

okay?' 'Why you rubbing your chest like that?' (his incision was itchy,

is all). 'You look pale', 'You

look flushed', 'Don't get up and get that, i will', etc. etc. etc. Bless

his heart (literally!), for a man

with little patience for such coddling and smothering, he was very sweet

and kindly about it.

Eventually, since he hasn't had any episodes since the implant, i've

backed off some on the constant

fretting and babying and coddling. I'm so mean, i don't even make him

supper any more on the

days i work! (I work at the county jail cooking for the inmates and

don't get home till 7:30p, and

stuff my face all day there, so ain't about to cook OR eat when i get

home!) I do make him mass

quantities of various casserole type stuff on my days off, that he can

nuke for himself. I have

taken over most of his former chores in the morning .... like dishes,

making the bed, straightening

up, sweeping, etc. Got to work on that, before i make him feel

completely useless. I still do

freak out if i call from work just to say hi, and he's not here.

That being said, i know if/when he has another episode (like receives

his first zap), i will

revert to the worrying, fretting, falling apart, smothering behavior.

It's just the way it is. Since

your husband is currently having problems, it's understandable why you

are in a state, ya know

it?

For me, i think i act that way because i'm so terrified. And it's a

way of making myself

feel better in a weird sort of way.... 'At least if he dies, he'll know

i really did love him', is

how that is rationalized. Have you ever thought that to yourself?

Sue

--

" She was not quite what you would call refined.

She was not quite what you would call unrefined.

She was the kind of person that keeps a parrot. "

-- Mark Twain

Rich and Sue Owens

http://www.geocities.com/Yosemite/Meadows/7457/index3.html

[Guest guest]

My husbamd has had an icd for two years now . i consider him lucky because

after listening to some of the problems here his seem not as bad BUT the man

i petrafied a nd rare;y leaves the house. Do any of you know about an

perfectly sweet man who s personality turned into a very frightened impatient

person. He either sleeps or sits most of the day. I cant get him to move3.

His icd went off about 6months ago 5 times . and since then his personality

has gotten worse. I don't know what it feels like but is this common ? He

is on Ameoderone and bunches of other Blood pressure and diabetes meds. Thank

you in advance for listening LDL

[Guest guest]

Hi everyone, my name is . I have long qt syndrome. The doctor wants me

to get an ICD and to be honest, I'm absolutely petrified. I have 3 children.

My oldest 2 each have an ICD because of the long qt syndrome. My daughter's

ICD has gone off on 2 occasions due to the settings not being set correctly.

I witnessed her getting these shocks and the 2nd time it absolutely mortified

me. The poor kid got jolted 6 times in a row. I'm pretty sure that I went

into emotional shock and haven't come out of it since. Honestly, I can't

imagine being mentally okay with myself having an ICD. I do realize that it

will save my life...but I just can't get past this fear. Any advice? Thank

you... (LandL24@...)

P.S. My precious son who was 3, passed away 2 years ago from long qt

syndrome complicated by a fever...I realize that if he had an ICD he might be

here today.

[Guest guest]

LDL-

Your husband sounds frightened and depressed. I would try to talk to his dr.,

also see if he will go to a support group. He may also need to see a

professional. I am a psychologist and I saw someone for a while after I had

my ICD. Yes I was luckier than most in how I did with my ICD, but I at times

I did not feel lucky at all. I don't know if he had a heart attack but there

is an increased incidence of depression after heart attacks. I felt motivated

because I had a three month old baby who needd me, but I can see under

different circumstances having more trouble adjusting than I did. Good lick.

Fran

[Guest guest]

-

I have been shocked a total of 14 times. It's always disconcerting and

upsetting. On the other hand, at least 4 of those times it saved my life. You

have to decide what you want to do, but I bet your kids would want you to be

here. I once went to a luncheon for people with ICD's and sat at a table with

a whole family with many members with long qt syndrome, all with

defibrillators. Talk to other people who have them. My husband has never

observed me when mine has fired and I think it would scare him (sometimes I

hate telling him it's fired because he worries so much), but other people

have. I have also been aware of it firing a number of times. You get more

used to it over time. For me it's a lifesaver.

Fran

[Guest guest]

Dear Friend: I have a problem similar to your husband. It is panic/terror.

Dr's finally acknowledge that if I was to have the resemblance of a normal

life, I needed to go on Ativan 3 x a day. Now, after six years, I'm down to

BuSpar only 1/3 pill a day. Talk with your doctor about the panic/terror

attacks. We all have different mental thresholds. I now go to movies,

stores, and walks. There is hope. Love, Jeannie

Re: Re: Cardiac Seizures

> My husbamd has had an icd for two years now . i consider him lucky because

> after listening to some of the problems here his seem not as bad BUT the

man

> i petrafied a nd rare;y leaves the house. Do any of you know about an

> perfectly sweet man who s personality turned into a very frightened

impatient

> person. He either sleeps or sits most of the day. I cant get him to move3.

> His icd went off about 6months ago 5 times . and since then his

personality

> has gotten worse. I don't know what it feels like but is this common ?

He

> is on Ameoderone and bunches of other Blood pressure and diabetes meds.

Thank

> you in advance for listening LDL

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

[Guest guest]

Hi, L....

> His icd went off about 6months ago 5 times . and since then his

> personality

> has gotten worse. I don't know what it feels like but is this

> common ? He

> is on Ameoderone and bunches of other Blood pressure and diabetes

> meds. Thank

> you in advance for listening

He sounds extremely depressed. How was he in dealing with life's

setbacks, before this

happened? Was he a 'kick me' sort of person, a 'take charge' sort of

person, or a 'why bother'

sort of person?

Gonna get on soapbox here... so run!

Seems from my observations there are types of people. You got

yer fighters. They get

knocked down, they get up again. They rage against their circumstances

and fight it. They have

a heart attack. They exercise, diet, learn all about it, argue with the

drs. on their treatment.

They're very admirable. But they tend to rag on everyone else to be like

them! They often

live longer than anyone else in a similar condition, but sometimes you

wish they wouldn't.

You got yer what comes, comes folks. (That's my husband.) The 'shit

happens' types. They

are not to into taking care of their health when it goes downhill, like

after a heart attack. They

figure life gives you what it's gonna give you. If you are to married

one, they really sadden and piss

you off, because they just don't seem to care.... just live for today

with their beer and cigs. and

bacon and eggs and what-all. No point in ragging on them to take care of

themselves. Today is

it, and that's all they care about. You get to thinking that they don't

really care about YOU either,

since they don't make much effort to improve things so they can be

around you. Easy to live with

people, unless they're really sick. Then HARD to live with.

And then you got yer 'Why me? Guess it's my day to die so why should

i even bother?' types.

Maybe your husband is one of these? To him, the sun doesn't shine

anymore. If i move or

do something, i might get zapped, or die. Sitting here in front of the

TV is at least better than

being dead. But IS it?

I think talk therapy, and anti-depressants, can do wonders for #3

above. (your husband?)

However, if he's always been a sort of defeatist person, no drugs in the

world will change

his basic attitude. Only he can do that. If he likes computers or

communicating, perhaps you

could get him interested in this list, and the others out there. Where

he can learn he is NOT

alone, others have his same problems, and are trying to deal with it

thru sharing, knowledge,

laughter, talk.

Just my .02 cents.

Sue (who has tried to get her husband interested in this list and

others, but he is the What

Happens, Happens type, and doesn't give a rat's butt about this.....

sigh)

[Guest guest]

Thanks, Sue. I loved reading your soapbox

sermon.

At 11:11 PM 3/3/01 -0600, you wrote:

He

sounds extremely depressed. How was he in dealing with life's

setbacks, before this

happened? Was he a 'kick me' sort of person, a 'take charge' sort of

person, or a 'why bother'

sort of person?

Gonna get on soapbox here... so run!

Seems from my observations

there are types of people. You got

yer fighters. They get

knocked down, they get up again. They rage against their

circumstances

and fight it. They have

a heart attack. They exercise, diet, learn all about it, argue with

the

drs. on their treatment.

They're very admirable. But they tend to rag on everyone else to be

like

them! They often

live longer than anyone else in a similar condition, but sometimes

you

wish they wouldn't.

You got yer what comes, comes folks. (That's my

husband.) The 'shit

happens' types. They

are not to into taking care of their health when it goes downhill,

like

after a heart attack. They

figure life gives you what it's gonna give you. If you are to

married

one, they really sadden and piss

you off, because they just don't seem to care.... just live for

today

with their beer and cigs. and

bacon and eggs and what-all. No point in ragging on them to take care

of

themselves. Today is

it, and that's all they care about. You get to thinking that they

don't

really care about YOU either,

since they don't make much effort to improve things so they can be

around you. Easy to live with

people, unless they're really sick. Then HARD to live with.

And then you got yer 'Why me? Guess it's my day to die

so why should

i even bother?' types.

Maybe your husband is one of these? To him, the sun doesn't shine

anymore. If i move or

do something, i might get zapped, or die. Sitting here in front of

the

TV is at least better than

being dead. But IS it?

I think talk therapy, and anti-depressants, can do wonders

for #3

above. (your husband?)

However, if he's always been a sort of defeatist person, no drugs in

the

world will change

his basic attitude. Only he can do that. If he likes computers or

communicating, perhaps you

could get him interested in this list, and the others out there.

Where

he can learn he is NOT

alone, others have his same problems, and are trying to deal with it

thru sharing, knowledge,

laughter, talk.

Just my .02 cents.

Sue (who has tried to get her

husband interested in this list and

others, but he is the What

Happens, Happens type, and doesn't give a rat's butt about this.....

sigh)

Please visit the Zapper homepage at

http://www.ZapLife.org

[Guest guest]

Dear Dave, I couldn't help but laugh as I read about your adventure. I had

a very similar episode not to long ago. No one seems to know exactly why I

had it. I have two dogs a large over 90# golden retriever and a small 30#

wired hair fox terrier. Both of them extremely gentle and loving. I am not

sure of details as to how it happened I had let the Golden out and was in the

process of letting of Chance the wire hair when all I remember is laying in

the middle of the family room floor thrashing and bouncing around and Chance

barking his head off and growling. I thought an earth quake or the end of

the world had just happened. I could not move but I could see and hear. I

thought here I am all alone and the world is going to hell and my friendly

little dog has these big ugly teeth and he is going to bite my head off what

away to go after all I have been through. What I didn't know at the time

that because Chance was barking like crazy and growling that Toby had started

barking and would not stop which caused my neighbor to wonder what was going

on. She tried calling me and when I didn't answer (she is 80) came over to

find me and call the squad. Chance was not going to let anyone near me until

the squad arrived Norma said that once he saw the bags and the stretcher he

settled right down by my side and let them do there thing.

All I can say is I have also added it to my book of adventures.

Sharon

Thank God for dogs

[Guest guest]

Sorry that I didn't see this in time for some encouragement before you left

for the hospital. Please know that we are all pulling for you and wll be

here to help you through what ever you must deal with. This group has helped

to pull me back fro the edge and make me want to get up and live again.

Blessings and Strength

Sharon

[Guest guest]

Stph

Where do you live that there is so little available? I received my first icd

about 12 years ago and that was how it was then. For me this board has been a

life saving and an emotional release sounds like you have been through a lot

on your own. My first implant was done at the Cleveland Clinic it was the

three part kind it fired repeatedly and caused me a lot of damage. That unit

was recalled. The next unit was little better after never getting straight

answers and any explanation it went of 48 times in 3 hours. They could not

repair it and my body would not tolerate any more surgery I insisted it be

removed. I know today that was a big mistake. Someone was watching over me

and I managed to go several years without one. Then I ended up on the floor

turning very blue as they tell me. I have a new one which I have had since

1999. I have lived in constant fear of the firing and the pain and all even

though this doctor gave me a great deal of info and support, the fear

remained. We have a local support group at our hospital but I find very

little support and comfort there.

This board has literally made me hang on and been there for me. About 6

months after last implant I just emotional lost it and I heard about this

group on the board and poured my heart out. I have very bad memory loss and

a multiple problems. There is a great deal of compassion among this group and

I have many friends.

I must say that this available support network has helped me more than

anything. Maybe its is because we are only names not people we see everyday

that we can be so open.

Blessings

Sharon

[Guest guest]

Sharon (and all), I live in New Orleans..we have one of the first heart

transplant facilities here, however, I wasn't in that one. My EP Doc, is

among the best in the south and one of 5 in the state. I don't know if it is

so busy for them, He did start a support group and I planned to go when my

mom had her 3rd heart attack. I understand this group meets every other

month. The group wasn't held until 4wks after the ICD...this isn't cool. I

tend to be one that just picks herself up and goes on...(eventially)..I don't

want to spend my time moping and feeling sorry for myself....I hope to leave

this earth helping others in need, and because of severe and cronic

depression that I have had for 22 years, I need to keep the focus off me....

I don't mean going into a state of denial....but lets face it..most of us

have looked death in the face...(or at the least have an idea that it will

come up) i suppose we women have a predisposition to try to calm the fears

of our family, and the women who have the men with ICD's tend to

obsess....about the care of their loved one. I guess we can maybe handle

better being the sick one and not vics versa...who knows how it works...and

it is surely diffeent for everyone.

I still believe that if you are referred for an EP study, and they tell you

that they may have to implant...then you need help for you and your family

before the implant so you know what to expect. Suprisingly, the Docs are

cooperating with me. So many questions that aren't covered in that little

book they send ya home with. My ICD is a Medtronics and I have found their

website very helpful...this site is a " lifesaver " . this is the very stuff

that I can make available plus my phone number and that of others who have an

ICD ....it does help to talk to someone who has been there done that.

Take care...and may you be blessed with a healing for you and yours,

Stephi

[Guest guest]

Sharon,

Had my ICD implanted under left collarbone at Cleveland Clinic.last October.

Mine is also uncomfortable, I think because it's just under the skin. I

have a guidant 1851. What's yours? Mine fired four times yesterday due low

heart rate. What fun. Every time I mention the soreness around my device,

the docs at the clinic basically ignore it. I agree they're not much help.

If yours is a guidant try to reach david in the chat room. He's an engineer

for guidant and can get you all the info you want. He sent me a 7 page tech

sheet on mine which explains everything.

Take care.

Mike

koch@...

Re: Re: cardiac seizures

> Stph

>

> Where do you live that there is so little available? I received my first

icd

> about 12 years ago and that was how it was then. For me this board has

been a

> life saving and an emotional release sounds like you have been through a

lot

> on your own. My first implant was done at the Cleveland Clinic it was the

> three part kind it fired repeatedly and caused me a lot of damage. That

unit

> was recalled. The next unit was little better after never getting

straight

> answers and any explanation it went of 48 times in 3 hours. They could

not

> repair it and my body would not tolerate any more surgery I insisted it be

> removed. I know today that was a big mistake. Someone was watching over

me

> and I managed to go several years without one. Then I ended up on the

floor

> turning very blue as they tell me. I have a new one which I have had

since

> 1999. I have lived in constant fear of the firing and the pain and all

even

> though this doctor gave me a great deal of info and support, the fear

> remained. We have a local support group at our hospital but I find very

> little support and comfort there.

>

> This board has literally made me hang on and been there for me. About 6

> months after last implant I just emotional lost it and I heard about this

> group on the board and poured my heart out. I have very bad memory loss

and

> a multiple problems. There is a great deal of compassion among this group

and

> I have many friends.

>

> I must say that this available support network has helped me more than

> anything. Maybe its is because we are only names not people we see

everyday

> that we can be so open.

>

> Blessings

> Sharon

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

[Guest guest]

_

I wrote you on sunday and said to talk to people and think about it.

Today my answer is different. I've had ICD's for 9 years. I've been shocked

by my ICD a total of 15 times in 8 different episodes. Half of those episodes

were not VFib, but Involved improper settings or the device misreading atirl

flutter as VFib and shocking me imappropriately. Four other times it saved my

life.

I had not been in VFib in 2 and a half years. Sunday afternoon I wasn't

feeling well, I've been down with a cold. I was tired and reading in bed. My

9 year old son and husband were downstairs putting the finishing touches on a

model car for him to race in an event Monday night. I found it hard to

concentrate on my book and thought I was dozing off. I set the book aside,

then got the dizzy feeling I've come to recognize and thought " Oh gosh, this

is it. " As soon as the thought had registered, I felt the shock and came out

of it quickly without losing consciousness. If I had not had an ICD, I would

have died in my bed (the interrogation showed my heart rate was about 300)

and my husband and son would have had to find me. As it was, I felt shakey

and scared but I was alive. I listened to them rolling the car around on our

wood floors for a while before I went downstairs. Monday night we all went to

the big derby. My son was thrilled that his car was 8th out of 50. I was just

thrilled to be there and share his happiness.

I don't enjoy getting zapped. But my life has been save 4 times by my ICD.

It's possible someone might have done CPR and gotten me an ambulance on 2 of

the occasions, but 2 occurred when no one was in the room with me. Also,

being resuscitated does not mean you will get resuscitated quickly enough to

prevent brain damage.

I would not want to go without an ICD, given my medical condition. I go years

without an incident, but one could happen at any time and I owe it to my

family and myself to take advantage of the technology that makes my

arrhythmia an inconvenience (albeit a scary one) rather than a death

sentence. It means I get to share my son's life and he gets to have a mom,

and my husband and I can still share our lives together.

If your doctor says you need an ICD, get one. The shocks aren't pleasant, but

they are over quickly. Your family and friends and the world need you here.

Please, please get an ICD. And keep corresponding and talking to others who

have one, because that helps a lot, too.

Fran