AF Newbie

[Guest guest]

I have recently been diagnosed with AF. About 14 yrs ago (aged 28) I

had a car accident after passing out at the wheel. In the ER I

reorted the pounding in my chest before blacking out and I had an ECG

and various tests including a brain scan, but by that time the

pounding had stopped so AF wasnt diagnosed. After a break of about 5

yrs I started to experience the odd episode of what I thought were

just palpitations but they always went after a short period of time

and I did nothing about them (like most people I assumed that I was

too young for anything to be wrong with my heart!)

I had a similar episode to that which preceded the accident

(thankfully not at the wheel this time) just before christmas and was

taken to hospital in AF which lasted 5 hours. The shock of the

suggestion by the Dr that I have the paddles put to my chest did the

trick and it stopped! Initially put on Sotolol which made me feel

like sh*t, now on propafenone (which are only marginally better) and

busy trying to understand what this all means. I never had anything

wrong with me in my life before so this has come as a big shock.

Also, I am a bit of a health freak, vegetarian, low or no fat etc.

After years refusing medicine including the contraceptive pill and

antibiotics to remedy mild infections etc, the prospect of taking

medicines for the rest of my life is way scary.

Two weeks since the latest attack I am now scared to go back in the

gym or go swimming. Anybody have any tips on returning to exercise? I

never used a heart monitor in the gym before, perhaps I should get

one...or is that being too paranoid? The meds make me feel so tired I

am not sure how long I would last on an exercise bike without nodding

off!

[Guest guest]

This is in no way a suggestion that you come off any medication. It

is only some information that you can do some more research on.

There is a surgical procedure called the Maze Procedure which is open

heart surgery, but it does have about a 95 cure rate for atrial

fibrillation.

I was cured of a lifetime of AF on April 10 98, by the Maze. It is a

very good option for people who are tired of the AF or medication for

it and want a cure.

If you want more information on the procedure you can go to the Maze

message board at http://www.mddietofutah.com/wwwboard/index.html

Or look in the Bookmark page of this site, under the Nonpharmacologic

Treatments section and click on the MAZE ALUMNI

Best wishes for a good New Year.

[Guest guest]

Welcome AF Newbie:

I had a history of permanent Afib and was finally put on Dofetilide

and have been in NSR now for fifteen (15) months. Although I am

slightly older that you <g>, I was an extremely active individual,

hiking, camping and most of all dancing! When my Afib started, I

thought it was the end and I would never be able to do all the things

I loved so dearly. But I started out slowly at the gym - and Ellen's

back <g>. Initially, I wore a Heart Monitor while working out - but

it scared the h*ll out of me - and that didn't last too long...so out

it went!

Before Dofetilide, I was on Sotolol and I was sick. Although it does

take a little time for any med to adjust to your system, Dofetilide

had absolutely no side effects whatsoever. I have had six

unsuccessful Cardioversions and over a dozen trips to the Emergency

Room during the year 2000. Many of the trips were in the middle of

the night and quite often alone and on the verge of passing out.

Like you, in all my years, and there are many, I was never ill, nor

did I take any medication - now I have ten pills a day....YUKE! I

hate it...but its the lesser of two evils.

The one thing that got me through this lousy ailment is the knowledge

that its not life threatening. We will all survive. Its just a

matter of finding the right physician, the right medication, the

proper exercise and relaxation, and most of all a good frame of mind

and lots of support from family and friends.

Hang in there - you are in good company here. And just maybe the year

2002 will bring us a wee bit closer to a Cure (other than Maze)!

Ellen

68 NC

**************************

> I have recently been diagnosed with AF. About 14 yrs ago (aged 28).

(snip) I have the paddles put to my chest did the trick and it

stopped! Initially put on Sotolol which made me feel like sh*t, now

on propafenone. (snip) I never had anything wrong with me in my life

before so this has come as a big shock. (snip)I am now scared to go

back in the gym or go swimming. Anybody have any tips on returning to

exercise? I never used a heart monitor in the gym before, perhaps I

should get one...or is that being too paranoid? The meds make me feel

so tired (snip)

*************************

[Guest guest]

Good Morning Jack and Happy New Year:

I think our messages to AF Newbie crossed in the mail. I am so glad

you're here. You create just the proper balance to our group.

Have a great 2002 - talk to you soon!

Ellen

68 NC

**************************

(smip)There is a surgical procedure called the Maze Procedure (snip)

I was cured of a lifetime of AF on April 10 98, by the Maze. (snip)

If you want more information on the procedure you can go to the Maze

message board at http://www.mddietofutah.com/wwwboard/index.html

Or look in the Bookmark page of this site, under the Nonpharmacologic

Treatments section and click on the MAZE ALUMNI

****************************

[Guest guest]

on Tue, 1 Jan 2002 at 13:08:07, makepieces wrote

:

> aged 28) I had a car accident after passing out at the wheel. In the

> ER I reorted the pounding in my chest before blacking out

>(like most people I assumed that I was

>too young for anything to be wrong with my heart!)

>

>I had a similar episode to that which preceded the accident

>(thankfully not at the wheel this time) just before christmas and was

>taken to hospital in AF which lasted 5 hours.

As you are : 1. young (i.e. compared to the class of AF patients

typically 65+), 2. your AF seems to occur around the same time as (I

presume) fainting/syncope, also 3. you would seem to be a fairly fit

individual, I think there is a statistical probability of you having the

" vagally-mediated " form of AF. Check my site out and see if it means

anything to you. http://www.vagalafibportal.fsnet.co.uk/

>the prospect of taking

>medicines for the rest of my life is way scary.

I also felt the same when my AF started. This is of course fine - to

start with - and *maybe* for a long time, depending on the course of the

condition for you as an individual. BUT: if your AF starts occurring

more often, I would now counsel making sure you find a treatment which

*stops* the AF attacks also covered under my site. The current wisdom

on AF treatment is that it needs to be pro-actively managed so as to

avoid the phenomenon of AF " begetting " more AF.

Flecainide seems to be the most likely med to help with vagal AF. AF

meds are, for some people, a " direct hit " , and you get sorted out

straight away - hopefully you might be one of these. For others, you

and your doctor end up on a real trial-and-error search (mostly error!).

After Flecainide, I would suggest asking for what I would term a " trial "

on disopyramide (it is not often prescribed early enough as it is

thought of as an " old " medication, and asking for a " trial " can get

around that prejudice). Dofetilide is another to try - I am not sure if

is particularly for vagal AF - but you can only get this at certain

approved hospitals.

You tried sotalol - it is also not so good for vagal AF. Also

propafenone is known to suffer what are euphemistically called

" therapeutic failures " with vagal AF.

Hope this helps

Best of health to all,

Vicky

London, UK, 1954 model

http://www.vagalafibportal.fsnet.co.uk/

" Recapture Hearing Your True Heart Melody " - R.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

[Guest guest]

Hi there

A few weeks ago I asked on this board if anyone else had passed out

with an AF attack. But no-one did (or they didn't answer). So it was

great (sorry) to see your post. My first episode was when I was 22. I

am 41 now. I have not been allowed to drive since.

When I pass out it seems I convulse. Like you it was the seizures (or

pass out) and brain scans etc that they focussed on. It was not till

10 years later they said I had AF (even though I told them my heart

was involved with the seizures). So I thought for 10 years I was

having 'panic attacks'. They try to say that me passing out and

having AF are not connected. But I know they are.

I srongly suspect a vagal component in my AF. It sounds that you have

this too. I hope you have better luck than me in trying to get your

problem understood. I have had to do it all myself. And this board

and other AF sites have helped me immensley.

You might want to check out aspartame and MSG as triggers (or as a

cause - I stongly believe the latter) for your symptoms. I have cut

them out of my diet over a year and am going from strength to

strength. These neurotoxins attack the hypothalamus (a part of the

brain that regulates autonomic nervous system function). This is

where the vagus nerve is affected. For more information go to www.

dorway.com

IT explains how these neurotoxins can cause our symptoms.

Fran

> I have recently been diagnosed with AF. About 14 yrs ago (aged 28)

I

> had a car accident after passing out at the wheel. In the ER I

> reorted the pounding in my chest before blacking out and I had an

ECG

> and various tests including a brain scan, but by that time the

> pounding had stopped so AF wasnt diagnosed. After a break of about

5

> yrs I started to experience the odd episode of what I thought were

> just palpitations but they always went after a short period of time

> and I did nothing about them (like most people I assumed that I was

> too young for anything to be wrong with my heart!)

>

> I had a similar episode to that which preceded the accident

> (thankfully not at the wheel this time) just before christmas and

was

> taken to hospital in AF which lasted 5 hours. The shock of the

> suggestion by the Dr that I have the paddles put to my chest did

the

> trick and it stopped! Initially put on Sotolol which made me feel

> like sh*t, now on propafenone (which are only marginally better)

and

> busy trying to understand what this all means. I never had anything

> wrong with me in my life before so this has come as a big shock.

> Also, I am a bit of a health freak, vegetarian, low or no fat etc.

> After years refusing medicine including the contraceptive pill and

> antibiotics to remedy mild infections etc, the prospect of taking

> medicines for the rest of my life is way scary.

>

> Two weeks since the latest attack I am now scared to go back in the

> gym or go swimming. Anybody have any tips on returning to exercise?

I

> never used a heart monitor in the gym before, perhaps I should get

> one...or is that being too paranoid? The meds make me feel so tired

I

> am not sure how long I would last on an exercise bike without

nodding

> off!

[Guest guest]

Hi,

Thankyou (and others) for your helpful replies.

I did note that you suggested that this condition is not life

threatening and that may for most cases be true, in as much as you're

not likely to die directly from the condition itself through heart

failure etc. However, my Doctor states that due to the severity of

the attacks I have had and

the frequency of the episodes I have, I have a serious risk of

stroke. He, (like one of your members sorry cant recall his/her name)

distinguishes " episodes " - the erratic heartbeat, feeling of

impending doom, being able to see your heart beating from the

movements in your chest etc.. from " attacks " where the episode is so

bad that the inefficiency of your heart causes you to feel dizzy and

pass out because. My Doctor says it is these " attacks " which are so

dangerous, as whilst the heart is pumping so inefficiently, there is

a high risk of a clot forming which is then pushed up towards your

brain. He also says that the number of " attacks " as opposed to

episodes will increase with age and having had a bad attack so young

(28)I will have more if uncontrolled. It is for this reason he states

that I will be on drugs for life.

[Guest guest]

Try not to worry about being on tablets for life. I started AF when I

was 21 and it took 10 years for the Doctors to recognise what was

going on. I am 41 now nearly 42. As I passed out with it on numerous

occasions (6 times a week to begin with) they labled me as epileptic.

Then when I was in a bad AF attack whilst getting BP done once I was

diagnosed. For the last 11 years I took tablets thinking they were

for life. It seems now that I have found the cause of my AF and have

taken steps to eliminate it. Because of that I am now drug free and

feeling great(for the time being).

What I am trying to say is that you never know. There are

advancements going on in the medical world everyday. Whilst it is

true that some people get worse, there are many who don't. And your

Dr should not be so doom and gloom about it. Try not to look at it as

a life sentence. It is an inconvenience, a very frightening one. I

have suffered near death experiences whilst my body has collapsed

with it. But so far, by cutting my triggers out I have not passed out

for a year. You can be proactive in managing it. And that in itself

can help you accept it and live with it. We all get down about it.

But a positive outlook really helps.

Has your Dr not mentioned Ablation or anything. That might help. It

seems to have helped many here. My Docs wouldn't consider it as they

say I am too young, and that is me at 41!!

And by the way, whilst I am in AF all the time, I have not suffered a

full scale attack for some time. So it is not true that the severity

will increase as you get older. That is taken from statistics. And we

all know there are three kinds of lies. Lies, damned lies and

statistics.

Hope that helps and good luck

Fran

> Hi,

>

> Thankyou (and others) for your helpful replies.

>

> I did note that you suggested that this condition is not life

> threatening and that may for most cases be true, in as much as

you're

> not likely to die directly from the condition itself through heart

> failure etc. However, my Doctor states that due to the severity of

> the attacks I have had and

> the frequency of the episodes I have, I have a serious risk of

> stroke. He, (like one of your members sorry cant recall his/her

name)

> distinguishes " episodes " - the erratic heartbeat, feeling of

> impending doom, being able to see your heart beating from the

> movements in your chest etc.. from " attacks " where the episode is

so

> bad that the inefficiency of your heart causes you to feel dizzy

and

> pass out because. My Doctor says it is these " attacks " which are so

> dangerous, as whilst the heart is pumping so inefficiently, there

is

> a high risk of a clot forming which is then pushed up towards your

> brain. He also says that the number of " attacks " as opposed to

> episodes will increase with age and having had a bad attack so

young

> (28)I will have more if uncontrolled. It is for this reason he

states

> that I will be on drugs for life.

[Guest guest]

> He also says that the number of " attacks " as opposed to

> episodes will increase with age and having had a bad attack so young

> (28)I will have more if uncontrolled.

I'm not too sure about this - I think with the use of drugs you can convert

more of your attacks into more bearable episodes. I was 29 when I first got

AF - the frist 6 months were terrible - many of my attacks put me in

hospital for several days. (heart rate 250+ and no oxygen getting round the

body is no fun at all!) The last attack I had that was bad enough for me to

call an ambulance was Dec 1999 - I've stayed out of ER since then. OK, I'm

hardly cured and my AF still isn't under control enough for me to do

anything when I'm in it but it's still miles away from the first 6 months.

I'm strongly of the opinion that the number of bad attacks should get less

as you find the right meds for you. I'm 32 now and the chances of me having

bad attacks when I reach 60 might be high if I was to stick to todays meds.

The chances of me being cured or under control when I'm 60 are higher given

the advances that have been made in recent years. Doing the best you can

with todays technology until something better comes along might mean that

you can at least get rid of the bad attacks.

All the best.

--

D (32, Leeds, UK)

[Guest guest]

Thankyou and Fran for your kind words of encouragement.

Sorry if I gave the impression that I am downhearted about this, it's

just come as a bit of a shock thats all. My Dr is very good too, he

is very direct, which I rather like (I like a Dr to say it how it is)

but he is also very understanding. Because he wants me on meds

permanently (unless there is good reason to come off them) he is

prepared to work hard at ensuring I get the right meds, so dont be

too hard on him (he's cute too *giggle*).

I am back in the gym and swimming and do one or the other almost

daily and I work full time, so I certainly am not letting it affect

my life. I started to wear a heart monitor in the gym and also at

other times to look at what happens during different activities at

different times of the day. It frightened the life out of me at

first! but it has taught me a lot about what my heart does and both

my Doctor and my instructor have helped me plan a good exercise

routine and it quickly taught me never to go from inactive to active

or visa versa too quickly (like getting out of and into bed). I never

had to quit any of the eating triggers as I am a totally boring

eater...vegetarian, no MSG, no caffeine, no e-numbers or additives as

I dont eat any processed food.

I have one question though We fly frequently across the atlantic

and are doing so in a couple of weeks to the Caribbean. I have never

had any episodes flying but the words 'stroke', 'clot' and 'embolism'

often used in discussions re A-Fib are nagging at me with all the

recent publicity about economy class syndrome. Anybody have anything

on this issue to share? Dr says I will be fine and that his advice is

the same as he would give anybody, with or without A-Fib.

[Guest guest]

I understand the shock. I got shell shock. Only because I had had it

for so long and put it down to panic attacks. It was when the Dr said

thats not a panic attack thats from your heart I spent weeks in shock

wondering how they could have missed something so significent. When I

was told it was AF and 'not life threatening' I felt better about it.

Also the fact that I had had so many episodes which caused me to

black out - and I was still here. So I tried to ignore it. I only

joined here a few weeks back.

You will probably be safer flying than most people. The meds you are

taking will see to that. So I wouldn't worry about it. Just enjoy

your holiday. Hey if you do get too scared I'll go instead. I could

do with a holiday. And the Carribean sounds ideal. LOL

Take care

Fran

> Thankyou and Fran for your kind words of encouragement.

>

> Sorry if I gave the impression that I am downhearted about this,

it's

> just come as a bit of a shock thats all. My Dr is very good too, he

> is very direct, which I rather like (I like a Dr to say it how it

is)

> but he is also very understanding. Because he wants me on meds

> permanently (unless there is good reason to come off them) he is

> prepared to work hard at ensuring I get the right meds, so dont be

> too hard on him (he's cute too *giggle*).

>

> I am back in the gym and swimming and do one or the other almost

> daily and I work full time, so I certainly am not letting it affect

> my life. I started to wear a heart monitor in the gym and also at

> other times to look at what happens during different activities at

> different times of the day. It frightened the life out of me at

> first! but it has taught me a lot about what my heart does and both

> my Doctor and my instructor have helped me plan a good exercise

> routine and it quickly taught me never to go from inactive to

active

> or visa versa too quickly (like getting out of and into bed). I

never

> had to quit any of the eating triggers as I am a totally boring

> eater...vegetarian, no MSG, no caffeine, no e-numbers or additives

as

> I dont eat any processed food.

>

> I have one question though We fly frequently across the atlantic

> and are doing so in a couple of weeks to the Caribbean. I have

never

> had any episodes flying but the words 'stroke', 'clot'

and 'embolism'

> often used in discussions re A-Fib are nagging at me with all the

> recent publicity about economy class syndrome. Anybody have

anything

> on this issue to share? Dr says I will be fine and that his advice

is

> the same as he would give anybody, with or without A-Fib.

[Guest guest]

>

> I have one question though We fly frequently across the atlantic

> and are doing so in a couple of weeks to the Caribbean. I have never

> had any episodes flying but the words 'stroke', 'clot' and 'embolism'

> often used in discussions re A-Fib are nagging at me with all the

> recent publicity about economy class syndrome. Anybody have anything

> on this issue to share? Dr says I will be fine and that his advice is

> the same as he would give anybody, with or without A-Fib.

I think the issue with deep vein thrombosis on long haul flights is the lack

of movement in the legs for a long time.

The easy fix is to get up and have a walk around whenever you can - and

wriggle your toes every now and again when you are sat down to improve the

circulation. (no doubt you are on warfarin or aspirin which will reduce the

risk also)

all the best

--

D

[Guest guest]

dear ,

As usual i read your post with great interest because I think you

have a good amount of knowledge of afib and a common sense aproach

to handling it. My question this time is; what did you mean when you

said something about " todays meds " ? My main concern right now is the

meds I'm taking. namely Sotatol and cumaden.

Thanks again,

Charlie

[Guest guest]

Dear makepeices,

What meds did your doctor put you on? Im new to afib too.

Thanks,

Charlie

[Guest guest]

At 16:52 6-1-2002 +0000, you wrote:

> > He also says that the number of " attacks " as opposed to

> > episodes will increase with age and having had a bad attack so young

> > (28)I will have more if uncontrolled.

wrote:

>I'm not too sure about this - I think with the use of drugs you can convert

>more of your attacks into more bearable episodes.

I have to agree with here.

I have the vagal lone parox high bpm(240) type...i usually don't mention

this and haven't even monetioned it to my cardio cause he laughed at me

when i mentioned the 240 number..but i'm pretty sure it once got close to

300...but i stopped counting at 240 cause i was seriously scared at that point

....the only attack in which i had my hand on the phone to call an ambulance...

i think that attack was one of the reasons i developed a panic disorder.

Got my first episode when i was around 18 years of age...

31 now and the periodes between episodes are getting longer and longer.

From twice a week when it all started to once every few months right now.

And that's without meds(except for verapamil when in an episode), needless

to say that that's not medical advice:)...i don't take bloodthinners either...

I do take a lot of care with my diet...

So i think that it isn't a rule that things will get worse...

I'm not sure why the periodes in NSR are getting longer..

It's the same for my causin...the more years pass the longer

the periodes in NSR between attacks.

Take care,

Willem

_________________________________________________________

[Guest guest]

> dear ,

> As usual i read your post with great interest because I think you

> have a good amount of knowledge of afib and a common sense aproach

> to handling it. My question this time is; what did you mean when you

> said something about " todays meds " ?

Hi Charlie, thanks for the post - my knowledge isn't as good as I would like

it to be

I said:

" I'm 32 now and the chances of me having bad attacks when I reach 60 might

be high if I was to stick to today's meds. The chances of me being cured or

under control when I'm 60 are higher given the advances that have been made

in recent years. "

I was trying to make the point that by the time I'm 60 a lot of progress

will have been made and many of the drugs we use today will have been

superceded. It's almost inevitable that doctors will look back in the future

and say were we really giving them drug x for AF. I'm not suggesting that

any drug that's old should be looked on with scorn - in many cases the

longer it can stick around the better it may be. I'm sure though, that there

will be better drugs coming out specifically targeted at AF - in the

meantime we have to find what works for us and keep the symptoms to a

minimum to maximise future success.

Sotalol is still a pretty new drug (FDA approved in 1992 and even more

recently for AF - 2000).

Coumadin has been around since 1954 and hasn't really had many rivals until

this year (AstraZeneca's new drug Exanta looks promising)

We are certainly in a better position today than people were 30 years ago

and I've no doubt that in another 30 years peopl will be saying the same

thing.

All the best

--

D

[Guest guest]

>

> Dear makepeices,

> What meds did your doctor put you on? Im new to afib too.

> Thanks,

> Charlie

Hi Charlie,

I was put on Sotolol first and it made me feel like death warmed up

(which was all over Christmas - got me out of all the cooking though

lol). So after a week the doctor changed me to Propefanone, Arythmol

to be precise and I am much better on that. The only side effect I

find is slight ringing in the ears.

Lesley Davies

P.S.Forgive my nickname, I changed my details on a new

Yahoo mail after unwanted hassle with the old address!

[Guest guest]

> >

> > Dear makepeices,

> > What meds did your doctor put you on? Im new to afib too.

> > Thanks,

> > Charlie

>

> Hi Charlie,

> I was put on Sotolol first and it made me feel like death warmed

up

> (which was all over Christmas - got me out of all the cooking

though

> lol). So after a week the doctor changed me to Propefanone,

Arythmol

> to be precise and I am much better on that. The only side effect I

> find is slight ringing in the ears.

>

> Lesley Davies

>

> P.S.Forgive my nickname, I changed my details on a new

> Yahoo mail after unwanted hassle with the old address!

dear ,

I have a funny reaction to the Sotatol. Most of the time I feel ok

on it( not as clearheaded as when I wasnt on any meds) but

sometimes, like yesterday I am totally spaced out on it. In lala

land and I'm studying for a big test on Saturday! The diff with

yesterdays dose was I took it on an empty stomach, even though the

directions asy thats how your supposed to take it to begin with. Oh

well. Thanks for your reply and good luck to you. I'll ask my doc

about the meds your on. mybe they'll work for me too.

Charlie

[Guest guest]

" " verapamil " "

Willem

Can you send some information on this drug. Is it an over the counter

med. I know I have vagal AF. I came off my beta blockers 11 days ago

and so far brilliant. I feel a lot better. I know that if and when I

have an attack I will need to take something. But I really don't want

to take a beta blocker. I have them on hand just in case. I still

have to go tell my GP what I've done. Although they knew I was going

to attempt it. Thanks

Fran

> >I'm not too sure about this - I think with the use of drugs you

can convert

> >more of your attacks into more bearable episodes.

>

>

> I have to agree with here.

> I have the vagal lone parox high bpm(240) type...i usually don't

mention

> this and haven't even monetioned it to my cardio cause he laughed

at me

> when i mentioned the 240 number..but i'm pretty sure it once got

close to

> 300...but i stopped counting at 240 cause i was seriously scared at

that point

> ...the only attack in which i had my hand on the phone to call an

ambulance...

> i think that attack was one of the reasons i developed a panic

disorder.

> Got my first episode when i was around 18 years of age...

> 31 now and the periodes between episodes are getting longer and

longer.

> From twice a week when it all started to once every few months

right now.

>

> And that's without meds(except for verapamil when in an episode),

needless

> to say that that's not medical advice:)...i don't take

bloodthinners either...

> I do take a lot of care with my diet...

>

> So i think that it isn't a rule that things will get worse...

> I'm not sure why the periodes in NSR are getting longer..

> It's the same for my causin...the more years pass the longer

> the periodes in NSR between attacks.

>

> Take care,

> Willem

>

>

>

>

>

> _________________________________________________________

>