Re: Chronic Afib

October 13, 2001

In a message dated 10/13/2001 5:22:22 PM Pacific Daylight Time,

diann@... writes:

<< , I know you have shared your experience and your brother's experience

and I thank you for that. I know we have a few other 'chronic' afibbers on

the list. I would love to hear how it was for you.

>>

Diann,

I don't think you should give up on returning to sinus yet. Maybe you

remember that last July I was in afib for ten days while I was taking

Amoxicillin after a root canal. Because that ten day session was my longest

to date, like you I was fearful (actually convinced) that this was it: that I

would never convert to sinus. Like you I was extremely depressed and upset

during those ten days. I did convert, though, and went back on my regular

" schedule " of every 11-14 days until now. As I mentioned in a previous post,

I have now been in sinus for 19 days for no apparent reason. This is my

longest sinus session since last December when I had been in sinus since the

previous September. I haven't done anything differently except that I have

been more upset and worried because of the war. Such is the nature of this

capricious affliction: once you think you understand it, afib plays an

unpredictable trick on you.

My brother tells me, as I've mentioned before here, that more than twenty

years ago, on the way to permanent afib, he would stay in afib for months at

a time and then convert to sinus and stay in sinus for months at a time. He,

of course, was taking no medication as you and I are doing. I think the fact

that we are taking medication is keeping us from permanent afib.

Also, I don't know how many years you've had afib, but my new cardiologist

recently told me that he doesn't think I am necessarily headed for permanent

afib. He said that he believes after eighteen years of afib I would be in

permanent afib by now if I were going to be. This idea may apply to you if

you have had afib for years. However, that thought leads back to

medication. In my opinion, I would be in permanent afib by now, as my

brother was by my age, if it weren't for my faithful friends: Atenolol and

Verapamil. Maybe the Digoxin would work better for you with Atenolol? My

brother takes Digoxin with 25 m.g. Atenolol every day, and most of the time

he doesn't know he's in afib since beginning that medication.

Another thought is that if you don't have any other serious heart problem,

you might ask your doc about Flecainide, which my cardiologist says is better

for women than Sotalol. He said that would be my next med if the Atenolol

and Verapamil stop working. Obviously these meds work differently for

different people, but the Atenolol and possibly Flecainide might be worth a

try for you since the Sotalol is not working.

You said that you had overexerted and were exhausted the day you went into

afib. I have found that I, too, will go into afib when I push myself to the

point of exhaustion. That is one almost sure trigger for me. Also, I used

to be a real night owl, frequently staying up until the wee hours working on

projects, but I find that losing sleep also can be a trigger. Consequently,

I now curb my natural tendency toward not knowing when to quit at night and

set a limit for myself. My previous cardiologist confirmed the connection

between losing sleep and afib. He said sleep loss definitely worsens afib,

and I believe him. When you go back into sinus, you might be wise to set

limits for yourself which prevent exhaustion. Also, I have read that

depression has a negative effect on the heart, and I believe this because my

second longest afib session of eight days occurred at a time when I was

extremely depressed about an event in my life. I'm convinced that the

depression prolonged the afib because I returned to sinus when the depression

was supplanted by excitement over a happy development. I know how hard it is

to avoid depression when you think you are facing imminent permanent or

chronic afib. I've been there. However, if you could try to focus on

rewarding activities and happy thoughts, that might help, too. I'm really

sorry for you because, as I said, I understand your worry. I've been in your

position and probably will be again. Worry is a fact of life for an afibber,

but thinking positively can really help. My brother is living proof of that.

His neighbors are always commenting on what an active lifestyle he leads,

and they don't even know he's in afib because his positive thinking keeps him

going past the point where most people would be exhausted. Those neighbors

would really be amazed if they knew he has a heart problem. I try to emulate

his attitude and lifestyle, but it's hard for me to be as positive and

disciplined as he is.

Keep us posted on how you're doing. I wish you the best.

in Seattle

October 14, 2001

Diann,

Really sorry to hear you're having such a rough time:(

Makes me feel ashamed of my complaining and of

being scared.

And also thanks for your story about you and your

brother...kinda sets my mind at ease knowing that people

live though very long sustained Afib periods..

A question for you and ...

Are your heartrates going through the roof when in those Afib

periodes, as in over 200 at times, and do you both have that

mamal/fish flopping in the chest sensation?

Take care

Willem

_________________________________________________________

October 14, 2001

In a message dated 10/14/2001 10:59:55 AM Pacific Daylight Time,

wsa30@... writes:

<< A question for you and ...

Are your heartrates going through the roof when in those Afib

periodes, as in over 200 at times, and do you both have that

mamal/fish flopping in the chest sensation?

>>

Willem,

I no longer have the really fast heartrates or the mammal flopping sensations

because I am taking medication which slows and stabilizes the heart beat:

Atenolol 150 m.g. and Verapamil 240 m.g.daily. However, for the first five

years before I started any meds, my heart rate was frequently 160-170 at rest

and sometimes 240 or higher with moderate activity. My afib did at that time

and still does usually start with the tachycardia. The only difference is

now that my top rate is usually around 160 as opposed to 240 without meds. I

started taking Atenolol 25 m.g, daily in 1989 because a Holter monitor

recorded my sinus heart rate at 240 b.p.m., and my doctor was afraid that I

would faint. At that time my doc thought that I had sick sinus syndrome, a

possibly genetic abnormality in the sinus node, the heart's natural

pacemaker. As I said before, my doc didn't know that I had afib until I went

for an ECG while I was having an afib session. She didn't change my med or

dosage after the discovery of afib until three years ago because the Atenolol

25 m.g. dose was controlling the afib which I only had about two to four

times a year. After I started the med, the afib was not much of a problem

because it was so infrequent. Before the Atenolol, the afib was an extremely

frightening experience complete with wildly fast heart rates, mammals, fish,

and all the other sensations you are all too familiar with. I was sure I was

dying every time it struck me. It never lasted more than 24 hours in those

days, but my life came to a stop when afib hit. I was usually afraid to move

and sat around crying and nursing panic attacks. Because the attacks would

usually strike in the evening, I would usually call a friend or my brother

for comfort because I was so afraid of being alone and dying during the

night. (Ironically, my brother had afib at that time, also, but he didn't

know it. He had experienced similar symptoms, of course, but neither of us

knew what the symptoms meant. The fact that he had survived those symptoms

was my only comfort.) So you see that you are not alone. Your reaction to

afib is very common. The difference between you and me is that you know what

it is, but I didn't know in the beginning.

Three years ago my meds had to be increased because the afib changed pattern,

striking more frequently and lasting longer. Also, I had intensified

feelings of dizziness and imminent fainting. I have never actually fainted

except one time after having novocain but have been very close numerous

times. Now I am doing quite well, as I see it, because the afib really

doesn't manifest many symptoms except when it begins with the fast sinus

tachycardia. I am able to carry on with my normal active life, thanks to the

medication, and almost never get upset over afib. When I feel the beginning

of an afib session, I am mildly disappointed but nothing changes in my life.

I would much rather not have afib, but I have to take my pulse periodically

to see if I am still in afib because the symptoms are nonexistent most of the

time. I'm sure the absence of symptoms is due in great part to the fact

that I no longer get upset. When I was having panic attacks, they just

intensified the afib symptoms by making the heart rate faster, I'm sure. Of

course, the example of my older brother who has had afib for most of his life

has really helped a great deal. By now I figure that if he and I have

survived this long, it's unlikely that afib alone will kill us.

I think that you could achieve the stability that I am experiencing with afib

by finding the right medication for you. Because meds act differently on

different individuals, your medication really has to be fitted to you. If

none of the meds work, then, of course, the next step is considering ablation

or surgery. For some people, it seems that none of the meds work or they

cause side effects such as fatigue, systemic problems, vision loss, etc.,

that make life miserable. I am very fortunate that two relatively harmless

meds make my life normal. (In the beginning, however, the Atenolol and

Verapamil caused extreme fatigue, and each time the dose was raised the

fatigue returned. As I have become accustomed to the meds, the fatigue

left.) Some people can't tolerate Atenolol or Verapamil at all. It's just

very individual, but even without meds, as long as your blood is

anticoagulated by Coumadin, death from afib is extremely unlikely. I do hope

that you can find a med that works for you as well as Atenolol and Verapamil

work for me. If not, there are always the alternatives of ablation and Maze

surgery to consider. Don't despair. Just keep looking for the right

solution.

Best wishes,

in Seattle (my twentieth day in sinus!)

October 14, 2001

Hi, ,

You mentioned that the fatigue that your meds caused vanished in

time. My main objection to toprol is that it is hard to do things

when I am taking it, because of the shortness of breath and my pulse

rate goes up to 100 on even mild exertion, so I creep around to avoid

stressing my heart and so going into frequent extra beats or afib.

Did you have this type of problem as well as the fatigue? If so, how

long did it take for it to go away?

Now that I am cross fingers back in sinus, I am once again casting a

jaundiced eye at my meds. Something, whether it is the higher dose

of toprol, the digoxin, or the coumadin, has increased my tinnitus to

the point where I notice it even in noisy environments. I'm going to

ask the doc if I really need the digoxin constantly; if it is just

for tachy rate control, perhaps I could take it when needed. And she

did say she doesn't think I will have to be on coumadin permanently.

Has anyone else had tinnitus from coumadin or digoxin? Something, I

think the coumadin because it coincides with when I am taking two

pills of that a day, is also making my mouth taste wierd. I thought

it might be causing bleeding there, but I don't see any signs of that.

I sure would liek to take something that would do a better job of

suppressing the extra beats, tho. Having one every 15-20 minutes

really gets wearing on my nerves.

Trudy

October 15, 2001

says: Pfizer will only allow Dofetilide to be prescribed when at

least three other meds has failed, one of these must be Amiodarone.

Yikes, that's bad news I can't imagine taking a damaging med like

amiodarone voluntarily, and dofetilide seems so promising.

October 16, 2001

In a message dated 10/15/2001 1:17:13 AM Pacific Daylight Time,

trudyjh@... writes:

<< Hmm, it has just occurred to me, maybe there is a vagal vs adrenergic

difference here. I am very very careful not to push thru the 100 bpm

barrier when walking, because pushing past my limit puts me into freq

extra beats per minute or afib. But since you have vagal, that is

maybe not a problem for you.

>>

Trudy,

You may have struck the reason behind my success with Atenolol. On the other

hand, I may just have weird chemistry because I have noticed another major

inconsistency regarding my Atenolol use. I have had asthma all of my life,

and Atenolol is supposed to aggravate or cause asthma. My doctors were very

concerned about this when I began the drug, but I have had very little

trouble with asthma in the past ten years. In fact, any asthma attacks have

been related to a virus and were easily controlled by using a steroid inhaler

for a couple of weeks when I was getting over the cold or whatever. I don't

understand why my asthma has not been worsened by Atenolol and neither do my

doctors.

I do have both adrenergic and vagal afib, but vagal is predominant. I never

have the kind of adrenergic afib that is caused by exercise, but I do

sometimes have an afib episode (adrenergic) that is directly related to

stress. I can exercise as much as I want. Exercise actually helps me return

to sinus sometimes, and it has never, to my knowledge, caused an afib episode

for me. Perhaps this peculiarity is the reason that Atenolol works for me.

It really shouldn't work because of the asthma and primarily vagal afib. I

guess it just proves that we are all different and can't know if a treatment

will be effective unless we try it. Without Atenolol I wouldn't be able to

exercise at all because I would be troubled with the severe dizziness which

was successfully eliminated by the increased dose of Atenolol.

in Seattle

(now in sinus for 22 days! I can't figure out the cause of this unusually

long stretch of sinus, but I'm enjoying it! I'm hoping that perhaps my

dairy-free existence for the past three months is finally paying off as it

did for Angus. He said it would get worse before it got better. Hopefully

I'm experiencing the " better " part now.

October 25, 2001

>When I told this same story (re my own condition) to my Cardio he

>explained that the heart itself makes what he called " endogenous

>digoxin-like substances " which help it to cope better. AIUI, these

>will help when there is not much of a load on the heart, but not so

>much when there is a load.

and Vicky thank you for sharing. I have been too depressed

about it all to respond to any of my emails for the past few days.

The afib is still going on, day 26 today. I am now taking 240mg of

verapamil SR (slow release) and 250mcg of digoxin. But I am still

having the slow beats at night. And sometimes racing in the day.

I had an exercise echo on Tuesday. They wanted to measure the

gradient of my mitral valve under stress. This will indicate to the

cardiologist whether or not a valve replacement would help me. They

did an echo before the test. The resting gradient was 6. My heart

rate was around 90. I could manage only 6 minutes of exercise, got

to what must be the completion of level 2 on the walking machine. My

heart was beating at 210 beats per minute by that stage. I thought I

would pass out. My legs were beginning to collapse and I had a

terrible pain in my chest. They did another echo straight away and

while my heart was still going at 200+ the gradient was above 16.

They did a couple more measurements and decided the average was 16.

I don't yet know much about gradients. I see the cardiologist again

next Thursday. Hopefully he will explain a bit more.

It has taken two days to get over the test. Wednesday and Thursday

this week I was breathless even walking from the bedroom to the

kitchen and soooo exhausted. I had to have many naps during the

day. Today feels a bit better. But the breathlessness is still

there. It is still morning here. I am sure something will get

organised regards my health and eventually it will be managed. But

in the mean time I am so depressed.

Glad to know I am not alone with my experience of this afib.

Warmest regards to all,

Diann in Sydney

November 2, 2001

Hi, Diann,

If i remember correctly, dofetilide is not an option for you because

pfizer isn't up to speed yet in Australia. Sure wish there was some

way you could try that before open heart surgery. I wonder if a trip

to the US to get started would be possible...

November 3, 2001

In a message dated 11/2/2001 2:56:48 PM Pacific Standard Time,

diann@... writes:

<< thanks again for sharing. My heart is still fibbing away. It

has been a month now. And I am feeling very depressed about it all.

I can only function a few hours a day. And as the exercise echo

indicated I am very exercise intolerant. Can't walk around the house

without being breathless. This is just a little report on my last

cardiology visit. >>

Diann,

I'm so sorry to hear you're going through a difficult time, but I don't think

you should feel that it's permanent. You just haven't found the right form

or combinations of meds for you yet. My brother in permanent afib was having

exactly the same problems as yours 12 years ago before his afib was diagnosed

and properly treated. The key is proper treatment. After he started taking

Digoxin and Atenolol, he was able to eat, sleep, climb stairs, and exercise

normally. If you persist in searching for the right doctor and treatment,

I'm sure you can achieve a more normal life.

I think many of us make a mistake in thinking that whatever is going on with

our afib state at the present will be our permanent status. At least I tend

to do that. When I was in afib for ten days last summer, I resigned myself

to permanent afib only to return to sinus and my previous in and out pattern.

When I'm in sinus I tend to think that this is the time I will never go into

afib again. We afibbers have to be flexible and willing to accept whatever

capricious whims afib inflicts on us because capriciousness and

unpredictability are hallmarks of the affliction. I have been doing very

well lately, in sinus most of the time, but I know that I must be ready to

accept a return to afib with equanimity and optimism rather than depression

that is so easy to fall into.

You asked about my combination of medications. I do take Atenolol 150 m.g.

and Verapamil 240 m.g. daily, and that is working well for me although, as I

stated before, this large dose was VERY difficult to adjust to in the

beginning. Probably this large dose would cause nonexistent blood pressure

in some people, but my blood pressure is normally about 170/80 or lower but

not too low. However, I have always had blood pressure problems

intermittently since I was a teenager, possibly because I tend to be very

high strung, nervous, compulsive about work, and emotional. Probably a

person with a less hyperactive nervous system than mine would not be able to

tolerate such a large dose of medication. However, you might ask your doctor

about trying a lower dose of both meds. I don't know how your medical system

is set up there, but you might, if possible, try consulting another doctor

for new ideas, too. Because everyone is different, I think you just need to

find the treatment that works for you. If you have tried all of the

medication options with no success, then it would be time to seriously

consider the Maze, especially if your quality of life is unacceptable.

However, I would want to feel that I had exhausted the medication

possibilities before undergoing the Maze. Trudy's idea about checking on

Dofetilide is a good one, I think, since so many have had good results from

that. I have decided that I would not have an ablation or Maze surgery until

I have tried Flecainide, my next option, or Dofetilide (if my current meds

stop working).

Best wishes and do continue to let us know how you're doing.

in Seattle

November 26, 2001

In a message dated 11/26/01 4:11:42 AM Pacific Standard Time, diann@...

writes:

> I am so depressed about my situation. The afib continues. It has been 2

> months now. I am now taking 300mg of metoprolol (betaloc) a day and it is

> not doing very much of anything

It's so hard not to be depressed and frustrated about your situation. You

can't do anything about the afib at this time, but you can do something about

how you feel about it. I'm a very spiritual person and I believe that

everything happens for a purpose. We are not being punished or tested. We

come here to learn through life's adversities. When I'm frustrated with a

situation that I cannot control I look for the things I can learn from it.

Don't give up your life to the afib. It's a fact of life that we have it,

but it's not a fact that we have to let it take over our life. As we age we

all have to make modifications on our lifestyles whether we like it or not.

I look at afib as just one of them.

MK in Louisiana

November 26, 2001

i know how you feel and it's easy to say to you to try toblock things out-but

thats not much help. i don't know how long you have had a-fib, have you

discussed other meds with you doctor; have you seen an ep. at some point, when

no meds work at all, you can get something that will regulate the pace-calan-and

you could feel much more comfortable. after 17 yrs of a fib-on and off much of

the time, i still search for a med. that works. i am 66 but not ready to give in

yet. good luck, try to hang in. max

AFIBsupport wrote:

> In a message dated 11/26/01 4:11:42 AM Pacific Standard Time, diann@...