Member Profiles

JAN

I was diagnosed with Paroxysmal Atrial Fibrillation originally at age 35, in 1975 when my cardiologist told me I could make the mini-fib episodes go away by drawing a deep breath. It worked for a few years, but by about 1985 I started having episodes that would not stop with a breath.

The first big one continued for more than 24 hours and after about 18 hours I went to my doctor. He prescribed Digoxin and after a few hours the fibrillation converted to normal sinus rhythm. The episodes occurred frequently - at least weekly - until I was sent to a cardiology group for a stress test and Thallium 201 stress test. A doctor prescribed a beta blocker which did not change the weekly frequency of episodes, and had numerous side effects. I went back to the cardiology group after a few months and one of the doctors told me they weren't prescribing a heavy enough dosage and she increased it. Still nothing.

I moved to New York City where a wonderful cardiologist was honest - at least - and told me there simply was no known control for atrial fibrillation other than medication (this was 1994) and he prescribed Norpace plus Coumadin. And I continued to have weekly episodes lasting anywhere from 12 hours to 36 hours. The episodes were lengthening. ( was age 54 by this time.)

Finally, in 1996 I got out of New York and moved to the mountains of California where I figured I'd relax and perhaps the fibrillation episodes might change. I found a cardiologist who changed my medicine, prescribing Sotalol - and the ubiquitous Coumadin, of course. The Sotalol had one interesting feature: all my side effects went away. I can't point to any with Sotalol. As to the fibrillation episodes...they started out at least weekly and my cardiologist pointed out that nobody knows what triggers the onset of episodes, but that they may be psychological, or physical.

I reflected and realized that nobody had ever taken a thorough blood test while I was fibrillating to match against a non-fibrillation blood test to see if anything physical was elevated in my blood. I doubt it's psychological - certainly not stress, or relaxation since it occurs in both situations. It HAS to be physical but I cannot convince my doctor to look any further. I feel like I'm being told, "here! Take this and come back in a year!" and all the research I've been able to look at involves ablation procedures, or finding out how the myocytes react during fibrillation - but it doesn't appear anyone's looking into what brings on the episodes. It's frustrating.
And despite drug costs of over $500 a month now - add lipitor and other reactions to stroke possibility - I still have fibrillation episodes at least weekly, although sometimes up to 2 weeks of freedom (if I carefully assure I take my Sotalol on an empty stomach). A doctor from Finland told me that if I take Sotalol and then drink milk, I might as well not have taken that dosage. Evidently the calcium in milk affects the medicine????? Dunno.

While I appreciate all the research and medical methods of getting rid of atrial fibrillation, I personally would rather see some research into fixing whatever brings on the episodes. Something has to start it. What??

Regards,

Jan




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