I am telling my afib story in the hope that others may learn and derive comfort and hope from my long
experience with afib and from the fact that I am still here, living a normal life, after many years of paroxysmal afib.
My afib story begins in the very distant past, perhaps even before I was born, in the genetic makeup of my ancestors.
Although it has not been proven, as far as I know, that afib can be connected to genetic heritage, the fact that four out
of my five immediate family members have or had afib suggests to me a strong correlation with genetic makeup. My father
experienced lifelong episodes of paroxysmal afib along with other heart problems; my mother also suffered from lifelong episodes
of palpitations, diagnosed finally late in life; my older brother has been in permanent afib for at least twenty to thirty
years; and I have experienced paroxysmal afib for at least twenty-two years.
My afib experience possibly began in childhood when I experienced episodes of rapid pulse. Although I complained
about this, my problem was never documented or diagnosed because doctors never witnessed my symptoms and apparently found
it difficult to believe that a child could be having the problems I described. At about age thirteen, I developed
Graves' disease, a thyroid condition which can cause excessive secretion of thyroid hormone, followed by inadequate and finally
no secretion of thyroid hormone. In my case, this process happened gradually over a period of years until at age twenty-four I
was diagnosed by my doctor brother who happened to notice one day that my eyes were protruding. This condition, called
exophthalmus, is a result of a thyroid problem, especially of Graves' disease. The endocrinologist to whom my brother
referred me hypothesized on the basis of childhood pictures of me that I had probably developed Graves' disease at about
age thirteen because it was at that age that the exophthalmus first appeared. I began thyroid hormone replacement
therapy immediately after diagnosis, beginning with Proloid; followed later by Cytomel, a T3 hormone; and Synthroid, a T4
hormone. Because my thyroid gland died a natural death, I now secrete no thyroid and must take Levoxyl for the
rest of my life. I have included the story of my thyroid problem here because both hyperthyroid (excessive) and
hypothyroid (inadequate) thyroid hormone secretion can be a common cause of atrial fibrillation. In
my case, a connection between thyroid and afib has not been proven, but I do know that I began to experience
severe problems with short bursts of palpitations and tachycardia (rapid pulse) as a teenager when my thyroid disease also
ostensibly began.
As I moved from my teen-age years into my twenties, the exophthalmus began to recede with thyroid therapy, and no
one connected with thyroid the short episodes of heart symptoms that I was experiencing. These intensified
until on one occasion in my twenties 911 was called because it seemed that I was having a heart attack. By the time
the medics arrived, my only symptoms were extremely rapid pulse, caused by the fact that I was hyperventilating, or so they
said. In retrospect, I believe that I was experiencing a short episode of afib before the medics arrived but had converted
to normal sinus rhythm by the time they saw me. They diagnosed my problem as a panic attack because of the hyperventilation
and the numbness in my extremities caused by hyperventilation. (Hyperventilation and panic attacks are closely connected
to afib because they can be triggered by afib episodes and show the same symptoms in many cases as an afib episode.)
On that occasion, if I was experiencing a panic attack, I believe it was triggered by the terrifying symptoms of afib, which
lasted for only minutes. I continued to experience these short episodes of heart symptoms, lasting no more than a few
minutes as I learned to prevent the hyperventilation that invariably would lead to prolonging the symptoms that made me feel
as if I were about to faint. On only one occasion in my entire life did I actually faint from the symptoms,
and that fainting episode was in a dentist's office. Shortly after I received a larger than usual dose of
Novocaine, I fainted and was unconscious for several minutes. (I subsequently learned the the fainting was probably
caused by Epinephrine, a form of adrenaline, in the Novocaine. Epinephrine can cause tachycardia. After learning
that, I had all dental work done without anesthetic!) Finally I saw a doctor about these episodes, but he
had no help to offer other than the suggestion that I should see a psychiatrist! I declined to do that and continued
to put up with these short bursts of heart symptoms.
After many of these short, undiagnosed episodes, I had my first definitely recognizable episode of afib almost exactly
twenty-one years ago while I was riding my bike after dark in a nearby deserted park. Out of the darkness, a dog suddenly
appeared and bit me on the ankle, causing me to fall from my bike. When the dog's owner appeared and reached inside
of his jacket as if to extract a gun, I jumped on my bike and pedaled as fast as I could to get away from the whole situation.
I pushed myself to the extreme physically, but I was also nearly hysterical with fear. After I managed to escape the
dog and his owner, I became aware as I pedaled home that I was having very strange sensations in my chest. I rested
for the next 24 hours but the sensations of imminent explosion in my chest continued through the sleepless night. That
was my first experience with the "mammal in the chest" sensations, a description used by many afibbers to define the sensations of
movement and flopping in the chest, caused by afib. That first absolutely identifiable afib episode was definitely
caused by stress and would undoubtedly be classified as adrenergic afib. I did not go to an emergency room or doctor
because my older brother told me that he had been experiencing the same sensations and survived, but neither of us had any
idea of what our problem was.
For the next five years, I experienced about three or four of these then mysterious episodes per year, with each lasting
from ten to twenty-four hours. However, I soon discovered that terror wasn't the only cause of those strange chest symptoms.
I also found out that certain foods and beverages could cause those strange sensations, and what I didn't know at that time
was that the sensations (afib) that resulted from eating and drinking were vagal rather than adrenergic afib. My first
identifiable experience with vagal afib occurred on a day when I was hiking in the woods and eating many not quite ripe,
wild blackberries. Suddenly I was stricken with sensations of very rapid heartbeat and flopping or movement in
my chest. I was quite afraid, but the fear came after the highly acidic blackberries and, therefore, probably did not
cause the afib. That episode lasted for about 24 hours, and I was also in agony with stomach pains during that 24 hours.
I didn't know, of course, that I had afib, and that the afib was probably caused by the vasovagal stimulation of the vagus
nerve due to the highly acidic content of the berries. My next afib episode was also caused by high acidic content,
this time in the form of a prepared iced tea mix with lemon. I drank several glasses of this and offered some to
my brother, who was in permanent afib at the time, but we didn't know that. The result was that I again developed afib,
and my brother also had what he described as "palpitations" and severe stomach upset. Strangely enough, at this time
both my brother and I thought that the problem was primarily with the stomach, not the heart. I didn't know about afib
and had no idea that various foods and drinks could trigger a heart problem.
However, during those first five years after the dog in the park episode, I had about fifteen to twenty episodes brought
on mostly by foods and drinks. On one occasion, I drank coffee before exercising and then went into afib while exercising.
On another occasion, I ate a very greasy muffin offered to me by a friend, and the result was afib. I gradually began
to see a pattern and started avoiding certain foods, but although I at first thought the problem was primarily
with my stomach, I began to realize that the problem was my heart. During that period I only had one afib episode besides
the first one that was actually caused by stress and, therefore, was adrenergic. During those first two years,
my afib was quite tolerable, but as time went on I became increasingly agitated with each episode, especially when the episodes
struck at night, because I was sure that I was going to die when I finally realized that the problem was with my heart and
not my stomach. I developed the pattern of being afraid to move while I was having an afib episode, would sit around
crying and moping, and was unable to sleep at night during an episode because of the symptoms and because I was sure
that death was near. To allay my fear, I acquired the habit of calling my brother on the phone for reassurance
and also so that someone would know if I died. Because my brother had experienced the same symptoms since his
teenage years, he was able to convince me that I would live; and his words had a great calming effect on me. Quite often
I converted to sinus rhythm while having those phone conversations with my long-suffering and reassuring brother.
Then after five years of this pattern, I started a new job and found myself in an extremely stressful work situation.
After about two months in this stressful situation, I began to have episodes of extreme dizziness and weakness which occurred
with increasing frequency. Whenever I saw my primary care physician about this, my heart was behaving perfectly; and
an EKG in the lab revealed no problems. Because she suspected that my episodes were due to a heart rhythm disturbance, my
doctor directed me to wear a Holter monitor (portable electronic heart monitoring device) for several days. That
Holter monitor recorded no afib but did record frequent episodes of tachycardia (extremely rapid heart beat) up to 240 beats
per minute. My doctor was extremely concerned about this primarily because these tachycardia episodes could cause me
to faint while driving or at another inopportune time. For this reason, she prescribed a beta blocker, called Atenolol,
to be taken in one small dose of 25 m.g. daily. This really helped with the tachycardia, but did not prevent an increasing
number of afib episodes. Although I didn't know that they were afib episodes, I could distinguish these ten to
24 hour episodes from tachycardia, and gradually began to recognize that they were often associated with a particularly stressful
situation or with something I had eaten or had drunk. Thus started the process of identifying my own personal afib triggers.
After about five years in this job and one more stint with the Holter monitor, which again revealed no problem with my heart,
my afib episodes grew more frequent and symptomatic. Finally, in desperation during one particularly bad episode, I
went to my doctor's lab on my own inititiative and asked for an EKG. That EKG showed a definite diagnosis of afib, and
my doctors and I finally knew what my mysterious heart problem was.
At that point, about twelve years after my recognizable afib episodes had started, my PCP suggested that I should
see a cardiologist since my afib episodes were worsening dramatically. The cardiologist gave me numerous tests, including
an echocardiogram and a stress echo. all of which revealed that my heart is disease-free and structurally very sound.
The stress echo showed that I was in the eighty-five percentile of fitness for women my age, and had no reason to restrict
exercise in any way. In fact, exercise seemed beneficial, since I often converted from afib to sinus during or
after exercise. Yet another Holter monitor test at that time again showed no signs of any heart abnormality, including
afib or tachycardia.
As my afib continued to increase in frequency, duration, and intensity, my Atenolol dose was increased to 50 m.g. and when
I had my first four day afib episode, to 100 m.g. I also began to take the brand name Tenormin form of the generic drug
Atenolol because it was my perception that Tenormin was more effective in preventing episodes although my doctor and pharmacist
assured me that the two drugs are exactly the same. (A pulmonary specialist had warned that I should not take more
than 50 m.g. of Tenormin since I am an asthmatic and beta blockers are known to affect asthmatics adversely. However, Tenormin
has not caused asthma problems for me, another example of the differences we all exhibit.) For three years after
I began to see the cardiologist, I desperately sought solutions to the increasing afib episodes by paying attention to activities,
foods, and drinks that commonly preceded my afib episodes. In this way I was able to avoid some afib episodes by changing
my lifestyle and diet, but neither the medication nor the lifestyle changes were enough to completely prevent afib or even
lessen the frequency. At this time my cardiologist offered me a sinus node ablation, but I rejected that because he
told me that my EKG's would still show afib, it would be irreversible, and I would have to wear a pacemaker for the rest of
my life. The only apparent benefit that I could see in the ablation would be removal of symptoms, but not of the afib
itself. When I had my first eight day afib epsiode, my cardiologist put me on Coumadin for three weeks in preparation
for a cardioversion, a procedure which would electrically convert me from afib to sinus. His strategy was to convert
me and then put me on Sotalol, a beta blocker with electrophysiological properties, hoping that the Sotalol would keep me
in sinus rhythm. After researching Sotalol and learning of some of its potential dangers, I rejected the Sotalol.
My doctor was not happy with this rejection, but he accepted it, saying he wouldn't "throw me out in the street." Fortunately
before the necessary, preparatory three week period on Coumadin had elapsed, I converted on my own back to sinus.
The cardioversion never occurred, and I continued to take 100 m.g. of Tenormin daily as my only afib medication.
After that initial eight day afib episode, I continued to have six, eight, and ten day afib episodes which began to
fall into a "schedule" of once every 11-14 days. Also, I began to notice that the afib symptoms were becoming more distressing
and disruptive of my life. With virtually every afib episode, I was experiencing extreme dizziness and feelings of imminent
fainting. I often had very short episodes in which my vision was disturbed by the appearance of reality growing dim
and gray, and sometimes I felt as if a pressure was building in my head. These symptoms were very disturbing and impossible
to ignore. Finally, on one especially bad day when I could no longer function at work due to the dizziness, I left work
early and dangerously drove myself home, stopping on the side of the freeway frequently because I felt as if I were
about to faint. When I arrived home after that risky trip, I called my cardiologist, who said to visit him immediately,
and then called my brother, who offered to drive me to my cardiologist. During that office call, my cardiologist raised
my Tenormin dose to 150 m.g. daily, started me on Coumadin 5 m.g., and for the first time added Verapamil 240 m.g.
daily to the Tenormin. He also ordered me to stay home from work the next day because he didn't want me to drive until
we could see how the drugs would affect me. Within a few hours of beginning the Verapamil, I converted to sinus and
felt normal. I started with the short acting form of Verapamil, but my doctor soon switched me to the long acting, time
release form. Because I did not do as well on the time release version of Verapamil, I asked to be switched back to
the short acting form, which I have taken consistently three times daily along with Tenormin. This combination has worked
very well for me and has controlled my afib to the point that I usually have no or few symptoms when I am in afib, although
these two meds did not ever completely prevent afib for me. I continued to have episodes of varying lengths about
every 11-14 days and continued to have worsening stomach problems which seemed to trigger my afib..
Then I learned from another person online that it was possible to eliminate afib by eliminating dairy products from the
diet. This man had completely eliminated his afib by stopping the use of milk, cheese, and, as he put it, "any
product of the mammary gland of cows." He encouraged me to try the experiment, and because I was scheduled for stomach
tests which required giving up milk and dairy foods for nine days, I stopped using all forms of dairy with the idea of just
continuing the stoppage even after the stomach tests were concluded. (Those tests showed that I am not lactose intolerant
and showed absolutely no physical problem with my digestive tract.) However, I experienced even more severe
stomach problems after stopping the milk products "cold turkey" and on the advice of another online friend, I went back to
eating small amounts of dairy foods, which I then gradually tapered off over a period of three weeks until I was completely
dairy-free. Since that time, August 2001, I have ingested not a molecule of any kind of dairy product, as far as
I know.
At first my afib improved for about three months after dropping dairy, but then in the fourth month afib episodes gradually
began to increase in frequency and length until I was in afib 50 percent of the time in January and February 2001. I
was ready to give up on the whole dairy experiment, but the man who had told me about this encouraged me to stay with it because
he, too, had gone through a period of worsening afib for about seven months after stopping dairy products. Then his
afib completely disappeared and has never returned. With this encouragement, I stayed with the dairy experiment through
very bad times in which many old problems from the past seemed to resurface and in which my afib seemed to steadily grow worse.
Then in April 2002, I only had two afib episodes, in May, 2002, I had only one afib episode, and in June 2002, I had no afib
episodes. Nine months after I gave up dairy products, my afib virtually disappeared. Since that time, I have had
an average of about four to six episodes per year, and this is certainly better than the schedule of afib every two weeks, which
I had been following. I continue to follow other lifestyle and diet changes that I had made before giving up dairy even
though none of those had worked to prevent afib before I gave up dairy products. Because I continue to believe
that lifestyle is important in managing afib, I recently changed jobs and now have a less stressful job. I think
that the lifestyle and diet changes I have made work together in controlling afib, but it was giving up dairy products that
made the critical difference for me. At this point afib is no longer a serious problem for me.
Update December 2008
Although it is still true that afib is no longer a serious problem for me, some changes have occurred over the past three
years since I wrote the above history of my afib experience. During 2005, my afib episodes increased in frequency and
duration to the point that I was having one or two episodes per week during most of 2006. I was also having increased
problems with ectopic beats like PVC's and PAC's which began to lead invariably to afib episodes. Then on November 26,
2006, shortly after eating dinner, I started the afib episode that has never ended as far as I know. My afib has
been permanent rather than paroxysmal since that November day, and permanent afib has brought some changes to my life.
Most of the changes have been welcome. Life in permanent afib has actually been easier for me than life with paroxysmal
(intermittent) afib. I no longer worry about afib triggers and can thus live a more normal lifestyle although I still
avoid dairy products, alcohol, and other common afib triggers for general health reasons. With my doctor's approval
I now enjoy a cup of coffee for breakfast, a pleasure I had to forego when my afib was paroxysmal. Also, I am far less
aware of my heart's irregularity and most of the time don't even think about afib because I have absolutely no afib symptoms.
I feel quite as normal as I previously felt in sinus rhythm.
Of course, this normality is largely due to my treatment for afib, which consists of the same drugs which I have been taking
long term when my afib was paroxysmal. However, the difference is that I can now take less medication because I no longer
have symptoms that need to be controlled. I am taking 75 m.g. of Atenolol daily, half of my previous 150 m.g. daily,
and 240 m.g. of Verapamil, 80 m.g. less than my dose for paroxysmal afib. I have been doing very well on these lower
doses. I also take Coumadin, but my doctor now accepts an INR of 2.0 as safe because the risk of stroke is smaller while
in permanent afib than it is with paroxysmal afib. When converting from afib to sinus, there is a greater possibility
for a clot to be thrown out than when one is in afib all the time.
One of the greatest advantages of being in permanent afib is that I no longer have to spend every day worrying about avoiding
triggers and staying out of permanent afib as I previously did. Now that I'm in permanent afib, I have realized that
at least for me it is preferable to paroxysmal afib. Because I have had such an easy time with permanent afib, I chose
to continue the rate control method of treatment and opted to avoid antiarrhythmic drugs, cardioversion, and possible ablation.
If I were to have extreme symptoms which might make life unbearable, I might consider a procedure or alternative drugs, but
I have been doing very well. I see no reason to make changes. Life in permanent afib is good.
