Miss you guys....Fran / Jackie and ?

I know you two have been posting for some time....I have not visited site in months....

I was first diagnosed about four years ago....had hospitalization to get back into rythmia.....

since then I have had three top cardiologists walk out of the room when I have questioned the drugs they are prescribing me....I am not rude or attacking, just inquisitive, and they say "just take the medicine!" and walk out....
I am 46 years young and don't want to take medicine for 40 more years....I self weaned myself down to 1/6 the the dosage they said to take and only down to two now....i haven't had but one episode in last two years because i cut dosages down to every three days....
I am on 25mg of Metropolol and 50mg of Tambicor once a day.....small dosages....but I just read where Tambicor should not be given to chronic AF patients....

have you heard this and does any one have any new findings about medicines or ? that are working?....
since I have not been on in months....are we any closer to finding cause or cure for this?
Thanks for you input and diligence
Doug

Doug

Its always wrong to advise someone not to take their meds. I take it that you have researched your own condition very thoroughly and know that you have no underlying problems. If the answer is yes then you should do what feels best for you. At the same time making sure you get good nutrition so your body is in tip top condition.

My own cardio and Dr's are not interested in me now either. Since I stopped meds they have made it abundantly clear I am on my own. Dr's have a protocol they have to follow and deviating from it can lead them open to all sorts of legal problems. From this I think it means that whilst you could have a reaction to one of the antiarrhythmics your Dr will be covered and need not fear any reproach from you or family as he is working with a set protocol. If your Dr said it was OK to stop your meds and something happened then he could be shown to be working against policy and your family or youself could have legal reproach. If you were not taking your meds against his wishes and something happens he is covered as he has warned you. In effect he has severed links with you.

Sadly - many of the Dr's don't realise just how awful the side effects of these meds can be. And from my own perspective the side effects were worse than the AF. Instead of helping you to get better they just seem to want to mask your symptoms and will try every pill and cocktail in a bid to do it. Even if it doesn't work after 20 years they (in my experience) wonder why you have not learned to live with it yet - as if the fault is with you.

Read up all you can - give your body a fighting chance with good nutrition. If you begin to feel better - then it is my understanding you are getting better...

Fran

Thankyou for your insight and frankness.....you hit it on the head....I am frustrated and the doctors do make you feel as though you are the problem....

I take it by your non response to question number two (are there any advances or cures for AF) that there hasn't been any since my last visit to site...?
thanks

Doug,

I can empathise with you completely. My first cardiologist did not want to be asked questions. He said "LAF is a nuisance" and I now realize he meant it was a nuisance for him! The three drugs he had me on at various times from Oct./02 - Jan./03 made the a-fib a great deal worse than it ever was before I was diagnosed, but he did not seem to believe it. When I was in ER for my 6th cardioversion (in 8 months!) I found out he had dismissed me as a patient: he did not think I followed instructions, never mind that the instructions were harmful.

In September our family GP found me to a new cardiologist who is a real treasure. He talked with, not at, me for 45 minutes and answered all my questions. He even answered a message I left for him a few days later. The first cardio never answered any phone calls.

The moral here is: if you keep searcing, eventually you will find someone who will actually help you.

Keep well! RK

Doug - Welcome Back,

There are several here that upped their dosage of Mg. glycinate to around 800mg per day, and saw fantastic results. Pls. visit the conference room for a very interesting discussion.

Richard

Doug:

In your post, this jumped out at me:

"I am on 25mg of Metropolol and 50mg of Tambicor once a day.....small dosages....but I just read where Tambicor should not be given to chronic AF patients...."

Are you 46 years old with chronic afib? That's pretty young to have chronic afib (ie: 24/7). Especially in the absence of underlying heart disease. Are you sure it isn't paroxysmal? (rapid onset and self conversion after some time)? If you have chronic afib, to continue to take an antiarrhythmic drug is worthless and harmful. If the drug doesn't keep you in NSR, at least to some extent, then you are right not to take it.

As far as the doctors are concerned, as Fran said, that for them to say "yes, OK" to your doing something illadvised, would suggest some culpability on their part. If you do something that is against their judgement, or not common and recommended protocol, they will always write in your chart "Patient is noncompliant". They do that to protect themselves.

Pam

You should be aware that Pappone's recent paper strongly suggests that ablation is now the preferred treatment for highly recurrent or chronic afib not drugs. His ablation data backs this up convincingly.
Any doctors who still maintain drugs are the "front-line" treatment are out of date.

Yypo...I agree. Ablation has been around long enough now and gets improved daily. If you can afford it and you are a candidate for the procedure , I do believe it is the only cure. Good nutrition just makes sense as a way of life etc. but all the vitamins
health food and drastic meds are just not going to totally take the afib away. It is true that if you disagree with your doc and go off meds and against what THEY advise...they will write you off. Covering their butts. However there are alot of doctors out there and alot of good cardiologists that can make the difference for someone that has chronic AFIB.

A note about trying different drugs: I am 56 and have been in and out of A-fib for 5 years, I think onset was related to menopause. I have worked in healthcare for 35 years and so I looked for a physician who would be open-minded (if there is such a creature) and listen to me. My cardiologist started me on Atenolol with coumadin, and this seemed to work for a while with A-fib monthly, but gradually my episodes worked up to weekly episodes, lasting for 2.5 - 3 days, quite a chunk out of a week. It got so that I was terrified of going to bed because my A-fib always fired off about 1 - 3 hours after I laid down (always on my right side, my left side precipitated A-fib routinely). I tried different approaches gleaned from this website (replaced mercury fillings, no alcohol, cheese, etc.) but could never find a trigger besides my position.

I have had to go to ER for drug conversion two times and I have had two hospitalizations. I go to ER as a last resort (when I start to black out) because of the cost. I have "good" insurance but an ED visit costs me $100+ out-of-pocket, or more if I have the misfortune to be in an area with a non-participating hospital. My overnight hospitalizations cost me more than $2000. A result of the second hospitalization was that my medication was changed from Atenolol to Amiodarone, of course my INRs went ballistic.

After my last encounter in ED, I asked my physician to refer me to an EP. I had an adeno stress test, it showed no underlying coronary disease, so I felt I might be an ablation candidate. The cardiologist made one last attempt the week before I saw the EP at controlling my A-Fib by replacing my Atenolol with Toprol but no luck.

I saw the EP 5 days later, he stopped the Toprol & put me on Cardizem .. I thought the world was going to end. My heart rate slowed to 40 - 55 BPM and my BP was so low that I could not stand, working was a real challenge. I gave this regimen a 7 day trial, and then asked the EP to review my meds. He stopped the Cardizem and put me back on half the Toprol dose I took before. In addition, he started me on Flecainide.

I am happy to report that I have gone 35 days with NO A-fib, a record for me. Also, I feel human again with this drug regimen. I even drank a margarita on my birthday! The atenolol and the amiodarone made me feel like I had a "governor" on my heart rate. Even when I needed my heart to speed up, like when climbing a hill, it could not respond. I now can shop, run around all day at work and make my bed without having to sit down every 10 minutes.

Anyway, I am going to ride this as long as I can and see if I can avoid ablation. I wanted to let folks know that maybe there is a "cocktail" out there that might work for them. My hope is to taper off on the Flecainide and dump the coumadin eventually.

Thanks for all the good information,
M