AF Information & Advice For Patients
Overview: I started my Afib journey in 1992 when I was 25 years old. At that time I was into bodybuilding and would occasionally experience runs of Afib in the evenings. I had visited a General Practitioner at that time and had some tests done. Nothing ever came from the tests and the doctor said that there was nothing to worry about. During my 18-year coexistence with this demon it took on many different personalities. It would go from being a nuisance to being totally nonexistent. Over that time I had ventured away form bodybuilding into competitive cycling. No Lance Armstrong by any means, but I rode and raced as hard as I could. During that time, 1996-2009, is when the Afib took a more major role in my life. Again it was never a constant problem but a problem nevertheless. I always felt fortunate that my episodes never seemed to last more that 5-10 minutes, the majority being at the lower end as so many others seem to last so much longer than that. I was also always able to know I was going to have an attack prior to it actually happening. I can’t really describe the sensation or feeling I had but there was definitely a change in my body I could physically feel before the onset of an attack. During the period from 1996-2007 the Afib did little to affect my lifestyle. Very occasionally I would have attacks during rides and events but was always able to recover from them. One thing I noticed was that after an event I could ride as hard and as long as I wanted to and not have to worry about a second attack. This always puzzled me, as everything I ever read about others experiences with this was that they felt very tired and drained. I have two personal acquaintances that have the same affliction and one is able to actually continue with whatever he is doing during an event and the other was not. I can only concur from these to different reactions is that one is in Afib and the other flutter. The other thing I found odd during this time was that my Afib would go dormant for long stretches of time. I went at times as long as a year with no episodes at all. Over that time I also discovered that the more fit I became the fewer issues I would have. I can only assume that it was the efficiency of my heart and muscles that caused this as most of my attacks on the bike were during recovery from hard efforts. I also believe that one of the attributing factors to my Afib was dehydrating and electrolyte deficiency, as my episodes would become more frequent as the season progressed into the hotter summer months and dissipate in the fall. During 1996-2007 I had seen several doctors and two cardiologists, had numerous tests and carried several different types of recording devices, as it was hard to get a record of what was happening. There was only one time that they got a recording under a controlled environment. This was during a stress test early on. The test went fine but they decided to leave me hooked up for a while afterwards. Just as they had decided to unhook me I went in to Afib. My heart rate went from 74 to 234 and all hell broke lose. I guess the nurse had never seen this before and she got all freaked out. The doctor however was very calm and said he could fix me but that was the last I ever heard of that as he was not my regular cardiologist. In more recent years 2008-2009 my Afib had become a totally different animal. The duration of the episodes really did not change that much but they had become more frequent and at times longer. I also started to experience chest pain, which was something I had never experienced in the past. Looking back I also believe that I was starting to experience flutter at this time but have no way of verifying it. I was still able to ride but was not able to recover from an episode as I was before. There were also times that I would have to call for somebody to come pick me up. There is so much more I could write about but I believe that this pretty much gets to the point.
Known Triggers: As my Afib was so inconsistent over the years it was hard to pinpoint what really would and would not trigger an episode. But this is a list of what I believe were some of the more reliable ones.
• MSG – I would often times have an attack after eating Chinese foods, which are notorious for high amounts of MSG.
• Alcohol – Though not a constant, I did frequently have episodes Dehydration – As stated in my overview.
• Electrolyte imbalance – As stated in my overview.
• Stress • Anger/Frustration
• Talking about it – Believe it or not I had many episodes following a discussion about it. Nobody that ever rode with me on a regular basis would ever mention or ask me how I was feeling, as it was sure to trigger an event. • Lack of sleep – I was always more prone to have an attack when fatigued or after a night with little sleep. Nothing better for your Afib than a good 8 hours of sleep.
• Milk – Not sure why but I used to drink a lot of milk but noticed that my episodes became less frequent when I stopped. This was a long time ago but I remember reading at the time about something in milk that I felt could be associated with Afib.
• Caffeine – I am not positive that this was a trigger for me, as it does not seem to be for others. I never did drink coffee or soda so this was an easy one for me to avoid.
Known Deterrents: I was never able to find anything that would help consistently alleviate or eliminate my Afib. I know that there are many that control theirs with supplementation but I was never able to find the right combination.
• http://www.afibbers.org - This is a wealth of information for those with Afib. There are discussions and always somebody out there to give you advice on what is working for them. It is also nice to have others to talk to that are or have experienced what you are going through.
• 800 mg magnesium/day – I was never able to get any relief from this but may afibbers do. I however have continued to take it even after my ablation.
• Potassium – I have found that since my ablation I occasionally have PAC’s, although the more time that elapses the less frequent they become. This seems to straighten them out right away.
• Taurine –
The Ablation: I had my ablation done in August of 2009 at UPMC Shadyside Cardiovascular Institute, Pittsburgh PA, and have been in NSR ever since. The decision to do this seemed a long time coming but again until recent years the Afib was never really a showstopper. Not only that, but with so many advances in the procedure of the years waiting, was the best option. In June of 2009 my Afib had reached a point where everybody in my life said it was time for me to see my cardiologist. They had been trying to persuade me for nearly a year and I also felt it was time. (I will speak of the importance of good cardiologist later). It had been a couple of years since I had been to see him and I had described the latest turn that my Afib had taken. We discussed options that I may have along with setting me up an appointment with an EP. He also gave me a portable event monitor to carry with me and told me to continue as I was but to ease off some activities. I had an appointment with the EP in early July. I must say I was a little apprehensive as everything I had read on ablation is that you should have it done by somebody that has done hundreds of the procedures and on a regular basis. When my EP walked through the door I knew there was no way that he could have the type of experienced others had suggested but after speaking with him he seemed very confident and knowledgeable. I also had a friend that had this same group do his ablation a couple of year’s prior with great success. So we discussed my options; ablation or meds, and decided that since I had been dealing with this for so many years that the ablation was the way to go. So we scheduled for late September. In the meantime he told me that I could continue to ride but at perhaps a lower level. As the weeks until my ablation went by my Afib became even worse. It got to a point where I gave up cycling altogether, as I could not even ride easy without having an episode either during or after a ride. I also did not realize that I was also starting to experience regular bouts of flutter. A few weeks went by and my EP called to say that there was a change on the schedule and that I could get in to have my ablation done a month sooner, which was very exciting and stressful. This is a major surgery and I felt was mentally prepared for September but not August. I was however glad to get an earlier date to get it over with. Now I can’t exactly remember the time frame for the next part but it was getting close to being a few weeks until my ablation. I was scheduled for a stress test and some other tests before the procedure. The stress test was 1 week prior so it was at least a week or two before that that my heart went into constant flutter. Now I am not sure if it was 24/7 but it was for the majority of the time. Now I did not know that it was flutter at the time. That was determined during the stress test. The day of the stress test my heart was still racing off and on; I did not expect for it to be a problem, but it was. I was unable to do a normal walking test and had to do a drug-induced stress test. That was one of the most unpleasant experiences of my life. I have pushed myself to the brink many times on the bike but never had I felt that bad. This is where they realized that I was in flutter, which is weird as flutter had never presented itself in the past. My heart rate was a pretty constant 150 bpm. The doctor put me on Metoprolol 25mg/day at this time. As the days progressed to my ablation the flutter became more persistent so they increased this dose to 50mg/day. The flutter was more annoying than anything. I felt pretty good but was really hyped up and was not sleeping more that a couple of hours a day. I lived this way up until I was admitted into the hospital the day before the ablation. Once I was admitted to the hospital they gave me drugs that slowed my heart rate down to a more manageable rate. The pre-op testing was really no big deal. I guess the worst test was the TTI. This is where they insert a probe into your esophagus to look for clots behind the heart. This seems to be a big deal for some people but it was not nearly as bad as others made it out to be. The ablation itself went well. There was a positive energy in the room during the pre-op and I maintained my sense of humor with my EP as well as all the staff that would be involved with my procedure. My procedure took ten hours. They did a flutter ablation as well as AV node.
Post Ablation: The procedure went well and I awoke in the intensive care unit. This was the worst part for me. ten hours on my back, on a surgical table and now I had to remain on my back for another twelve. The pain in my back was excruciating. After a while I had a new nurse come on duty. He was very well informed on what I had been through and stated that the most important thing to do was to keep my legs straight so as along as I did that I could lie on my side. What a relief that was. Nothing else major happened that day except wonderful NSR. I was seeing some weird readout on the screen but these; I came to find out were normal. It is called shadowing, I think, and happens when you move around and is not caused by a strange heartbeat. The next couple of days in the hospital were uneventful. I was started on blood thinners but nothing else. I was also stuck in ICU as there was no other beds available elsewhere. After a couple of days, I was moved from ICU to a regular room. During this time, I was not confined to my bed and was encouraged to move and walk around. That evening I was feeling a little out of sorts. I was seeing some weird blips and waves on my monitor, shadowing, and I wish I had known this was normal. I soon went into Afib, which kind of freaked me out at first, but then I remembered reading that this can happen as the heart is irritated. My EP had also opted to not start me on any anti-arrhythmic drugs as per my request. If I could go back I would have requested to be put on this type of drug immediately to help prevent this from happening. I converted on my own in about six hours and that was the last episode I have had since then. They started me on Flecainide 100 mg/day the very next day. I was already taking Metoprolol 25mg/day (they need to be taken together) along with, Warafarin. My stay in the hospital was prolonged due to the fact that my NRI levels would not stabilize. I ended up being in the hospital for 7 days. Once I got home life went pretty much back to normal. I was told I could start to exercise but to take it easy. I started to jog and was walking to work every day. I soon quit jogging as I felt that I might be pushing myself too hard and did not want to foul things up. I had to go every other day to have my blood levels checked. They could not get my dosing right and when they finally did it was time to come off of the blood thinners, which was in December. I however remained on the Flecainide and Metoprolol until April. I was given an event monitor to wear for 1 week to look for any abnormalities. After that I was weaned off of the drugs at my follow up appointment, Flecainide first, then Metoprolol. I took my last Flecainide in April and the last Metropolol in early May. I have had no real problems to speak of. I still do have the occasional PAC/PVC not sure which, but those continue to dissipate with time. I am back to more aggressive cycling but am still limiting my heart rate and gradually allowing myself to push back to my Maximum Heart Rate. One thing I have noticed is that my heart does not respond to effort as quickly as it did before but I am assuming that the heart is learning new pathways or recalibrating. I have also noticed that I have only been able to raise my heart rate incrementally. One week I can only get it to 140 then a week or so later 150 and so on. On the other hand I am able to sustain efforts that would normally fall into line with my normal MHR so I can only assume at this point that I will be able to reach that point again. I have continued to take the magnesium, potassium and Taurine. For the magnesium, I take approximately 800 mg a day. I also use trace mineral drops throughout the day mixed with my water. I use a potassium powder that I sprinkle on my food instead of salt. Not sure of the amount I am getting but many people take 2000 mg a day. I take the Taurine in a capsule form twice a day. This regimen was unable to help me before but I am hoping that it will keep me from having any future difficulties.
Medications: Over the years I was only on a couple of different drugs. I however was never on an antiarrhythmic until after my ablation.
• Digoxin (Rate Control/Beta Blocker) – This was the very first drug I was ever put on. It was the very early stages of my Afib and prescribed by my first Cardiologist. It made me feel horrible and I was unable to get my heart rate up. It also for some reason seemed to make things worse.
• Tiazac - Had no apparent affect on me being able to perform on the bike. Not real clear if it had any affect on the frequency of Afib episodes.
• Metoprolol (Rate control) – Completely eliminated my ability to raise my heart rate. Did little to slow my heart rate prior to my ablation.
• Flecainide (Anti-Arhythmic) – Many people are able to successfully control their Afib with this drug. Must be used in correlation with a rate control such as Metoprolol. When I was on the Flecainide and Metoprolol my resting heart rate would go as low as forty BPM, which is about ten to fifteen beats lower than my normal. It dropped below that a few times but not very often. My blood pressure would also drop to abnormally low levels causing me to be light headed occasionally. I also experience terrible nightmares during this time. Often times waking up only to go back to sleep and pick up where the dream left off.
Choosing a Cardiologist or Electro-Physiologist: I cannot stress enough the importance of choosing a good cardiologist. A good cardiologist will listen to you and fully discuss all options before recommending what he feels is best. Just because he does not do what you think he should do does not mean he is not the right one. They must be willing to listen to everything you say, not start writing prescriptions the moment he walks into the room. He should make you feel comfortable about your situation and make you feel confident in what he is doing in terms of your care. I ditched my first cardiologist, as he would not listen to what I was saying and started writing prescriptions instead of running tests to find out what was really going on. Being younger at the time it was hard to find one that was in tune to my lifestyle. I was fortunate to find one on my second attempt. He was, in my opinion much more qualified and willing to listen than the first. He also immediately ran tests, to find the core problem instead of throwing drugs at it. As far as electro-physiologists go I am unsure. There is much merit in those that say the more procedures performed the better. On the other hand I feel that the best doctors in this field, or any field for that matter, are yet to come. Familiarity can breed indifference and routine which is what I believe you don’t want in a surgeon, as every situation is different. You want somebody that has your best interest at heart. Somebody you feel comfortable with as they will have your life in their hands.