Greetings to all,
I've been reading this Forum extensively and have been incredibly blessed by the numerous insightful and helpful posts. Before asking some questions, I thought I would share my journey with 15 years of Afib across three continents and probably more than a dozen different doctors. Inspired by the testimonials of Conference Session 61, I will attempt to follow that format, so my story might hopefully be helpful to others.
FIRST TIME AF
I remember my first episode in Germany in 1993 at a period of my life when I was working 12 hour night shifts in medical homecare. It happened out of the blue in the evening in a relaxing environment, and I had no clue what it could be. I just felt my heart beating unbelievably fast and irregular; I became dizzy and lightheaded and had to sit down on the floor, as I thought I might pass out. This lasted for about an hour, when suddenly the heart beat went back to normal. At the time, I was experiencing increased stress, as I was just preparing to get married. Three to four night shifts a week made it difficult to maintain a proper routine, which also affected my nutrition. Initially I was not very concerned; I was happy that it had stopped and did not consult a doctor about it, as everything seemed to be OK for a few months.
BURNING HEART
One day, after the night shift, I suddenly woke up with incredible pain in the heart region and a very slow, but regular pulse. As I was alone in the apartment and thought I was having a heart attack, I called the emergency services. I was treated on location with some cardiac medications for suspicion of a cardiac incident due to the Bradycardia and brought to the hospital with an ambulance. There they found nothing wrong with my heart, but diagnosed Esophagitis due to Gastroesophageal reflux disease (GERD). After a few weeks of taking Ranitidine (or a similar H2 receptor blocker) everything seemed fine again. About six months later, during our honeymoon, I had a similar episode of Esophagitis in Singapore, which was confirmed through an Endoscopy(Esophagogastroduodenoscopy). I was put on Ranitidine again for 30 days and the GERD appeared to be cured.
AF RETURNS WITH A VENGENCE
In the Philippines, during our first year of marriage, I was finally diagnosed with Paroxysmal Atrial Fibrillation after having recurrent episodes a few times a year. The episodes usually occured while lying in bed early morning and lasted up to two hours. My heart rate rose to 180; I could not even sit up, as I felt like passing out. It was very scary, especially for my precious wife who was thinking, she was loosing me. The cardiologist prescribed Digoxin for heart rate control and Calcium Channel Blockers supposedly for prevention. The Verapamil was completely ineffective in stopping or preventing AF, even after taking it for many months. They also tried Diltiazem which was just as ineffective, and which gave me more side effects. -- Years later I found out, that Calcium Channel Blockers alone are useless for preventing or converting AF. I never took the Digoxin for more than a couple of months as I could not tolerate its side effects (feeling down and without energy). Only recently did I find out from reading the studies referenced in articles on this board, that Digoxin is completely contraindicated and useless for prevention of AF. Nevertheless, every cardiologist (except one) who treated me included Digoxin as part of their treatment protocol. Especially after realizing, that my AF is vagally mediated, I now explicitly refuse Digoxin, if it is offered to me.
HEART BLOCK IN THE ICU
In the following 12 years I was treated by various cardiologists in the Philippines and in Germany. The AF recurred about four times a year. Sometimes, if I did not convert after a few hours at home, I was treated in the ICU. Usually they used Amiodarone for pharmacological cardioversion and Lanoxin for rate control. After reading about the dangerous toxic effect of Amiodarone on many essential organs, I refused to continue to take it after being sent home. One ICU visit was especially bad: I had been in Afib for about 12 hours, and treated with IV Amiodarone loading doses among others. In the middle of the night the ICU nurse awoke me as she was trying to inject something into the IV. This was somehow incredibly painful. I have a very low threshold for pain have frequently passed out from the most minor of injuries since childhood. The sudden pain caused not just syncope, but it caused some sort of shock reaction in my body. Apparently a heart stopping ventricular arrhythmia was triggered. The heart monitor flatlined for almost a minute, which my wife reported to me afterwards. The emergency personnel prepared to resuscitate me with a defibrillator using electric shock. Just as they readied the paddles, I woke up, looking at a startled group of emergency nurses and my worried wife. I eventually converted to sinus rhythm after 19 hours and went back to work teaching a 3-week seminar the day after. I thank God for giving me a new lease on life.
FLECAINIDE PIP
My cardiologists finally settled on Flecainide (Tambocor) for prevention and treatment of my AF, as they found no structural heart disease. The minimal Aortic Valve Regurgitation, which they found was not considered to be a cause for AF and was not considered a contraindication for Flecainide. My blood pressure was normal and has usually been around 120/80. For many years I successfully used the Pill-in-the-Pocket (PIP) approach to convert to NSR within about 1 to 8 hours. I usually took about 200 to 300 mg within 15 minutes after the start of AF. The effect of Flecainide on heart rate and conversion was sometimes quite violent. My AF heart rate was usually close to 160 bpm and Flecainide rather increased than decreased that rate. When reaching sufficient blood levels of Flecainide after about 2 hours, I could feel the rhythms change viciously as the heart tried to convert, but did not quite get there. I would break out into sweats, almost passing out, while lying down. I had to literally crawl to the toilet, as my blood pressure went down to around 90/50. Usually a few minutes before conversion to NSR, it felt the absolute worst.
One cardiologist recommended taking a Digoxin loading dose (500 - 1000 mcg) about an hour prior to taking Flecainide, in order to control the heart rate better. I used this approach for a few years, and while preventing the worst side-effects, the episodes tended to last longer and the heart rate was still pretty high. This was probably due to the relatively slow increase in blood levels of Digoxin as compared to the faster pharmacokinetics of Flecainide. For any episode lasting longer than 30 minutes I went to the hospital emergency room for observation of the PIP treatment. This was pre-arranged with my very supportive Filippino cardiologist, who would visit me there and send me home after converting to NSR, usually after a few hours. This saved me from ending up in the ICU as before and worked quite well for a number of years, until my cardiologist died of a heart attack. The frequency of severe and minor episodes of AF seems to have increased in the last two years to about six minor episodes and about two severe ones per year.
FIRST ELECTROCARDIOVERSION
In Germany, in the middle of 2007, I had another episode of AF and went to the emergency room for observation. I initially converted to NSR after an hour, but returned to AF just as they were about to send me home. The doctor insisted on treating me there and I ended up in the ICU once again. He did not like it that I had already taken Flecainide 300 mg and wanted to put something else in the IV (I think he wanted to give another antiarrhythmic drug). I protested, as I was concerned about unpredictable interactions of taking them at the same time. He relented and agreed to continue to treat me with oral Flecainide, as they didn't want to give it by IV. He added a high Digoxin loading dose by IV, as he was concerned about my fast heart rate. I should have protested this also, but did not really know enough to suggest another alternative for rate control. This was a big mistake, as it led to the longest episode of AF I had had up to that time. Instead of converting in less than 24 hours as I did dozens of times in the previous 14 years, the treatment continued unsuccessfully for 36 hours without converting to NSR. They eventually decided on an electrocardioversion which was successful.
TERRIBLE BETA-BLOCKER
Upon release I was prescribed Flecainide 200 mg per day and a beta-blocker, Nebivolol (5 or 10 mg per day) in divided doses. The cardiologist's rationale was, that the PIP approach was not working reliably enough, and that the beta blocker should provide sufficient rate control and additional prevention potential. I had never been on such a high daily dose of Flecainide in my life. In previous years I had been on no more than 100 mg/day for prevention of AF, but did not see a significant difference in the frequency of episodes, so I had always gone back to the PIP approach. The addition of the Beta-Blocker was of further concern and I questioned the doctor regarding its side-effects, especially considering my medical history:
I have had mild to moderate Asthma since 1989, which started suddenly at a period of my life as my mother was dying from cancer, causing me great anxiety. The Asthma is kept in check with about 500 mcg Fluticason Inhaler (a corticosteroid) and 25 to 50 mcg of Salmeterol (a beta2-adrenergic receptor agonist) per day. I still wonder, if years of these drugs contributed to the development of LAF. All other cardiologists had previously said that beta-blockers are contraindicated for Asthmatics. Now this new drug, Nebivolol, was supposed to be more cardio-selective and was supposed to have the lowest side-effect profile of all beta-blockers on the market. Even though I did not experience any exacerbations of my Asthma, the other side-effects of this combination were the worst of any drugs I had ever taken in my life. I could hardly function and it got worse after a few weeks of taking them. I started to get insomnia, felt chronically fatigued, on the verge of depression and my libido was affected. While being on Digoxin years before already felt like being slowly poisoned, the Flecainide/Nebivolol combination felt like it was slowly zapping all life and energy from my body. Not having AF was little consolation. The doctor did not think the side-effects could be caused by this, but I suspected otherwise. I recognized the effects of the higher dose Flecainide from my previous PIP treatments, which usually brought me down just for a day or two. But the addition of a beta-blocker potentiated its effects on me while adding various new symptoms. In consultation with another doctor I slowly lowered the dosage of Flecainide to 100 mg/day and of Nebivolol to 1/4th of the prescribed dose. It prevented my AF, but after a few months I realized, that I still felt like I was living in a foggy daze. I finally decided to discontinue even the 1/4th tablet of Nebivolol. Surprisingly after about a week my life went back to normal and all of the side-effects disappeared. I believe that I'm especially sensitive to beta-blockers even at this very low dosage.
HAWTHORN (Crataegus)
I substituted the beta-blocker with 450 mg of Hawthorn (Crataegutt WS 1442), which is a herbal treatment commonly prescribed in Germany for its beneficial cardiac effects. I had taken Hawthorn on-and-off over the years in conjunction with other supplements and realized, that I should have continued it more faithfully. There is some evidence of its anti-arrhythmic qualities and it is considered to have the same benefits as ACE inhibitors, without having any side effects. (see also [
tinyurl.com]) Personally, I believe, that Hawthorn has a synergetic effect on preventing AF when I take it in combination with Flecainide. It also seems to shorten episodes and make the process of converting back to NSR less violent.
VIRUS INFECTIONS & DEHYDRATION
Over the years my main identifiable trigger for AF has been the common cold. I seem to catch any cold virus going around the world, even if it passes by on an empty airplane 10 miles away. I used to have about eight virus infections per year, lasting one to two weeks. The AF always came, after the body had fought off the virus and I was almost feeling well, usually one day after the cough and colds had subsided. I could sense the warning signals when waking up very relaxed and feeling healthy, while at the same time all the nerves in my hands and feet felt kind of passive (not numb, but less sensitive). That's when the heart often started to play up with a series of bumps (probably PACs or PVCs). If I could not stop them in the first few seconds, I would go into AF for the following hours.
An additional trigger for me, especially in the tropical climate here is dehydration. I perspire well above average and loose easily two liters of water through my skin in an active day. This then makes me feel incredibly fatigued for hours and increases the likelihood of AF. I've tried to make up for that with oral rehydration fluids, drinks like Gatorade and mineral supplements.
FLECAINIDE CAUSES ATRIAL FLUTTER
Since the end of last year a changing pattern of the AF emerged. After taking about 300 mg of Flecainide to attempt a conversion to NSR the rhythm changed from AF to Supraventricular Tachycardia (Atrial Flutter) within a couple of hours. This appeared to be much more resistant to pharmacological cardioversion than the AF. The Atrial Flutter was either at 120 or at 240 bpm regular, which was of great concern to the Cardiologist. I was able to change the heart rate from 240 to 120 doing carotid sinus massage, which was nice to observe on the heart monitor, but it did not last and returned to 240 shortly after I stopped. The rate slowly went down after Verapamil and Amiodarone, but it did not convert to NSR. After 24 hrs in AF, I had to undergo TEE and Electrocardioversion , which was successful.
Since January I was put on 200 mg Flecainide / day plus a calcium channel blocker, Verapamil 120 mg /day for rate control. It worked quite well to prevent AF, but I could not tolerate the side effects at that dosage. I would often wake up in the middle of the night with the feeling of a racing heart, even though the heart rate was normal. My whole body often felt like it was overcharged with electricity. I had trouble concentrating, carbohydrate cravings, anxiety and loss of energy. After slowly adjusting the dosage to 100mg Flec and 90 mg Verapamil / day the side effects lessened, and became at least somewhat bearable.
PASSING OUT DUE TO CAROTID SINUS MASSAGE
Everything seemed fine, when another episode hit me in July, again due to virus infections. Taken at home, the 300 mg Flecainide PIP did not convert me back to sinus, so I went to sleep, hoping I would wake up in NSR. To my dismay, the rhythm had changed from AF to Atrial Flutter at 110 bpm. At least the verapamil was working to control the rate, but I was desperate to get back to NSR. I did carotid massage on my neck, hoping it would help, as it had sometimes helped in the past to get back to normal. This time, it really went wrong, as I had somehow affected the heart rhythm to become worse. I passed out and felt like I was dying; it was a really strange experience, which deeply affected me. I woke up after maybe a minute or maybe a couple of minutes later shouting out and praying for Jesus to help me. My wife had woken up and was praying for me and getting cold water to keep me conscious. I blacked out again, but regained consciousness after about half a minute. It took thirty minutes before I became stable enough to handle the extremely bumpy ride in a Philippine ambulance, as it felt more like riding on a flatbed truck. Eight hours later I was successfully electrocardioverted. In the aftermath my heart felt less stable and more prone to PACs, which have usually been precursors to AF for me. A month later time an episode was triggered by lying on the right side (not the left!). This episode of AF lasted about an hour which went from AF to Atrial Flutter and then amazingly converted to NSR; which was truly an answer to prayer.
SUPPLEMENTS & MAGNESIUM PROTOCOL
Therefore, since this last electrocardioversion (my 3rd), I have been seriously considering getting an ablation in Germany, and have discussed this with my Cardiologist/Electrophysiologist, who is recommending the procedure. Before going this route, I want to test out some other options first.
I have adjusted my Flecainide to 50 mg TID (150 mg/day) and continue with the Verapamil SR at 90 mg/day. So far this provides me reasonable prevention of AF with managable side-effects. Vitamin C 2000 to 4000 mg TID helps me to lessen the virus infections. I have been taking some form of magnesium supplements over the past ten years, but had not quite realized until recently how crucial and foundational magnesium is for the maintenance of NSR. I believe I have not been taking enough and not of the right kind. Usually I was taking 200 to 400 mg per day, mostly Magnesium Oxide and often combined with Calcium at a ratio containing twice as much Calcium. I now realize, that this was probably not sufficient to restore intercellular magnesium levels in the heart. Therefore I increased my magnesium intake to 500 - 750 mg / day which is near bowel tolerance especially in combination with the high doses of Vitamin C. I found a chelated form, but cannot find Mg-Glycinate or Mg-Taureate anywhere in this city of two million people. I have added Taurine 3000 mg per day, which seems to help in absorbing the Mg and lessens some of the side effects of the Flecainide/Verapamil. Additionally I have upped my consumption of Potassium containing fruits & vegetables to 5000+ mg/day. I've halved my coffee consumption to 1 mug per day, dropped the Calcium and cut out the Salmeterol. I've continued with the Hawthorn, added Vitamin E400 IU, a Vitamin B50 combination and 200 mcg Selenium. For improved sleep I'm taking a couple of Valerian/Hops capsules every night. I'm planning to try adding L-Arginine and Lysine, if I experience any PAC's, as this appears to be promising.
Getting enough magnesium in the body in a short period of time to replenish intercellular magnesium seems to be the hardest part. I've asked the doctors here and in Germany to add magnesium to my treatment for AF, but they claimed it does not apply despite numerous studies that show its effectiveness. (see 'Magnesium for the Treatment and Prevention of Atrial Tachyarrhythmias' [
www.medscape.com] ) I've tried a couple of IM injections of Mg-Sulfate, but it has been more painful than expected. I'm planning to try Mg-chloride through the skin, if I can find it here in pure form. I might also try weekly IV infusions, as one study indicates: 'Intravenous magnesium sulfate corrects intracellular magnesium (iMg) deficiencies immediately postinfusion.' ( [
www.ncbi.nlm.nih.gov] )
TRIGGERS:
Primary: virus Infections, physical exhaustion, dehydration, lack of sleep
Secondary: more than 3 cups of coffee in a day, more than one glass of wine
AF occurs mostly at night or early morning, always at rest. I consider it vagally mediated, even though I don't have the typical slow resting pulse of most vagal Afibbers. My morning resting pulse is 70 or above.
EFFECTIVENESS OF THE CURRENT PROTOCOL:
For me Flecainide 50 mg BID was not effective in preventing AF. 100 mg BID was effective, but unbearable. Currently 50 mg TID works best for me (no 75 mg tablets are available here). Flecainide without some form of rate control was problematic for me especially in PIP, but even for prevention. I've currently settled on Verapamil for rate control, which appears to be effective.
Whereas the flecainide treatment has been proven to work over the years, my current supplement protocol is quite new and intended to increase the effectiveness of the flecainide (and hopefully replace it one day). In the three weeks since starting the new supplement program I have seen the following changes: 1) no more PVCs, PACs, 2) I survived one virus infection without going into AF, 3) no more sensitivity to lying on the right side, 4) much reduced side effects of the Flecainide/Verapamil combination, 5) better sleep. This is just a preliminary finding regarding the benefits. I will have to observe this for another few months to draw some definitive conclusions.
REVISITING THE GERD
None of my doctors has ever considered a possible connection between the AF and my Esophagitis/GERD 15 years ago. Until yesterday, I never considered a connection either. Reading Session 28 and a number of posts on this board, has stimulated me to investigate this further.
I'm grateful to God for giving me a wonderful family. Me going into AF can be quite stressful for my wife and children, and I hope to be able to find a successful strategy to overcome this thing.
Id appreciate your feedback regarding my story.
Blessings,
Christof