Re: Re: seizures and AF and a BIG moan

[Guest guest]

In a message dated 12/21/2001 2:28:36 PM Pacific Standard Time,

fross@... writes:

> And when I read of the so different

> treatment you all get it makes me realise how bad it is here. Thanks

> for listening if anyone read this far.

>

Hi Fran,

Well I did read this far. At least now I know my doctors

are far from the worst. You've been through a lot.

Unfortunately I do not have any words of wisdom. Just

take it easy and do what you can for yourself. Hope somehow

you find a better doctor.

Take care,

Best wishes,

Bill Utterback

South San Francisco, CA, USA

[Guest guest]

Fran, you certainly had had a bunch of bum doctors.

Is there nothing you can to - take a train or something

to a city and get some decent care to get you started?

Did the doc who said you should have never been put

on digoxin say why? I am currently taking it myself, but am

somewhat uneasy about it because I keep hearing folks

who have been warned off it by their cardiologists.

I hate that " unfitness " crap. Especially when they test

me and I am taking toprol, which is like having a 50 pound

sack strapped to my shoulders, which they don't believe can

have that effect.

I am just a layperson, of course, but:

you mention tremoring four days after stopping the

sotalol and starting the tambocor. I would be willing to bet

money (well, 25 cents is my limit :-) that what you felt was

not a side effect of the tambocor but rather withdrawal from the

sotalol. It takes awhile for blood levels of medications to drop,

so having a withdrawal effect kick in several days after stopping a

med is totally possible, and tremoring is a common withdrawal

effect. A beta blocker like atenolol can control

tremoring, so it could have suppressed the withdrawal symptoms.

If that's the case, it isn't clear to me if the good effects you

felt when going from solatol to tambacor were due to getting rid

of the solatol or from starting the tambacor. It might be worth

asking a decent doc about trying the solatol again, starting at a

tiny dose, if you feel you need a better med.

You are in an especially tough spot with no docs to choose from.

But there are bum docs everywhere. I remember how frightening it was

when I first developed afib and I knew my current internist and

cardiologost were just not up to snuff. It was a real burden trying to

find good docs when I was scared to death about the afib and had no family

near by to help.

trudy

[Guest guest]

Hi, Fran,

I made a typo in my reply. I was suggesting that maybe the tremoring was a

withdrawal effect of the sotalol, not a side effect of starting the tambocor.

So my idea was maybe your doc would consider trying the tambocor again,

maybe you could start on a tiny dose and see if you had a problem with it.

I have never tried either, but I was taking ativan for awile, and had a

terrible tremoring problem when I stopped taking it. My beta blocker

suppressed the tremoring a lot.

I'm sorry about your sister. That stress and tiredness must be affecting you

a lot.

A number of folks in here have developed afib after huge stresses in their

lives. Maybe the relaxation tapes mentioned in various messages would help

you in general and with afib.

[Guest guest]

In a message dated 12/22/2001 11:45:50 AM Pacific Standard Time,

fross@... writes:

<< Perhaps it would be nice to be totally drug free for a

while, just to see how I really react. Then if the worst comes to the

worst it would be worth a try. >>

Fran, I have been told that Atenolol must be stopped gradually to avoid bad

results. If you do decide to stop any of the drugs, I would have a supply

nearby to take immediately in case you begin suffering intolerable dizziness

or near fainting episodes. It takes an hour to an hour and a half for the

Atenolol to take effect, however. Perhaps you should ask your doctor about

taking a larger dose of Atenolol? My Atenolol dose has gradually been

increased from 25 m.g. to 150 m.g. The last increment to 150 stopped the

dizziness and tachycardia which I was suffering. Not everyone can take such

a high dose, but it works for me, even though I am also an asthmatic. (I

also concurrently take Verapamil.)

After I spent two years resisting my former cardiologist's intense desire to

give me Sotalol, my new cardiologist, fresh out of training, tells me that

Sotalol is not as effective with women as it is with men. I feel vindicated

for my steadfast refusal to take it. He said that Tambocor would be his next

choice for me if the combination of Atenolol and Verapamil stop working for

me.

Regarding digoxin, I believe that the controversy arises from the fact that

there is apparently some evidence that Digoxin can worsen afib in paroxysmal

sufferers like you and me. My former cardiologist told me that it can

promote permanent afib. I don't know if that has ever been proven, but it

seems that some doctors are strong advocates of digoxin while others place it

in the same category as hemlock, which didn't do poor Socrates too much good.

:-) My older brother who has been in permament afib for 20-30 years, exact

time unknown, was totally nonfunctional twelve years ago before he started

taking Digoxin. He couldn't sleep, breathe, eat, or even walk upstairs.

Within two days of starting Digoxin along with Atenolol, he was leading a

normal life with all symptoms eliminated. He has been taking Digoxin along

with Atenolol for 12 years and leads a very normal, active life. Of course,

he is in permanent afib as he was before the Digoxin. My cardiologist said

he wouldn't give me Digoxin when I asked about it because I am still

paroxysmal after eighteen years of afib.

Regarding the stress issue, I believe that long term stress can cause or

activate afib, but it seems to me that the individual's heart must have some

preexisting tendency toward afib. My primary care doctor confirmed that

opinion when she said that she is under extreme stress all of the time, but

her heart doesn't do what my heart does in response. (She does, however,

have a ventricular problem, which is worse.) In the case of my brother and

me, I think we have a genetic tendency toward afib which was activated by

events in our lives. One of those events was a situation such as you are

facing. It was after caring for our dying mother 24 hours a day while

holding full-time jobs that afib worsened in both of us. I understand what

you are facing because I have been in that situation. As you say, the

healthy family members distance themselves from the unpleasantness, and the

burden is left on the shoulders of those who will follow through and do what

has to be done. At the time, my mother's doctor told me that I would pay

with my health for the long hours I was putting in with my mother. Would I

do it again, knowing the outcome? Yes! Someone has to show commitment to a

loved one. For me, there is no choice. It was one year after my mother died

13 years ago that my brother was virtually incapacitated with afib and I had

to start the Atenolol to control tachycardia and irregular beats. Both my

brother and I believe that the year of devoting our total energies to our

mother's care had an adverse effect on our afib. Coincidentally, our other

brother who distanced himself and left the work and anxiety on our shoulders

does not now have afib! In fact, he is the only one in our immediate family

who has not suffered afib to some degree. Since he is an M.D., he probably

knew the possible outcome of getting involved and decided not to participate

except by giving us medical advice over the phone and coming to see her once.

There must be a message there! However, I do not resent his failure to

assume responsibility for our mother's care. Some people apparently do not

have the psychological strength to cope with the extreme agony of caring for

a sick or dying person. Perhaps those of us with a tendency toward afib who

can and do cope with unpleasant situations wind up with afib. Perhaps it's

the price one must pay for a compulsive commitment to others.

Fran, I do hope that you can find someone to share in the care of your

sister. My brother and I agree that neither of us could have done it alone.

Just having someone to give you a bit of relief from time to time would help.

Also, having an understanding person with whom to discuss the situation

really helps, too. You may be sure that I understand what you are going

through and can really sympathize with you. You are already a strong person

to be able to stand up under the pressures you have faced. I am sure that

that strength will allow you to get your afib under control with the right

kind and dose of medication. Since it sounds as if traveling to a place

where better health care is available might just create more stress for you,

probably the best approach would be to ask about a higher dose of Atenolol or

to try the Tambocor.

Best wishes!

in sinus in Seattle