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The Afib Experience

Welcome Sunset

My Experience with Atrial Fibrillation

Living With and Adjusting to Atrial Fibrillation

Red Rose, Growing

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.




The afib experience described here is that of one person. Because everyone experiences afib differently and requires different medical treatment, the information on this page is not meant to be an endorsement for everybody of any one treatment or approach to coping with afib. Only a doctor can advise an individual afib patient on the necessity of visiting an emergency room during afib, avoiding certain triggers, undergoing a certain procedure, or taking specific medications. No information given on this site is intended to be medical advice. "One size does not fit all" afibbers.  To get further information,  to make comments on this Website, or just to let me know you visited, please use the form below, writing your name, e-mail address, and any comments or questions.

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