AF Association
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My AF history

I think it’s the time for me to tell my story, so I don’t to look like an intruder in this forum. I had my very first episode of AF during a hard fought tennis match (since I was an assiduous tennis player for many years). At that time, I had just turned forty years old and was in top physical form. The AF attack only lasted a few hours and I felt fine afterwards, but It came back again after another hard match a few weeks later. Then, I realized that strenuous physical execise would bring it it and from then on, I tried to avoid over exerting myself physically. This kept the AF away for a few years in spite of my being a tea, coffee drinker and a wine lover. As I got older the triggers of AF got more varied, strong coffee and severe mental or physical strees would bring it. By the way, all this time I was without any medication. After I had a more severe AF episode 5 years after the first one, I was hospitalized for a comprehensive heart examination, that included catheterization of the coronaries. All the test were negative except for PAF. Since my AF episodes were still very infrequent and only lasted a few hours, I was not given any medicines. 20 years later I had a severe attack after drinking some cocktails before dinner. I was hospitalized for another exhaustive cardiovascular work up, which was also negative except for AF. Thisi time I was prescribed a beta blocker and one Aspirin a day. Seven years later, the surgeon performed the Cox Maze procedure on my heart and told me I was “cured”, but this cure only lasted seven year, because one morning I woke up with AF, but this time I noticed a big difference, instead of a fast irregular pulse, the heartbeats were very slow, and they would not increase even with excercise. The attack disappeared spontaneously after a few days. One year later, the AF came back after a restless night and severe emotional stress caused by a serious financial loss. This time it would not go away and had cardioversion for the first time. Unfortunately the AF only went away for 24 hours. Then, I was referred to the EF for an ablation, but he said that it was too dangerous because of my advanced age, and also because my heart had too many scars from the previous maze procedure. Instead he implanted a pacemaker, because I was having definite signs of a sick sinus disease because of my very slow pulse. For the AF, he prescribed Tikosyn or Defetilide, an antiarrhythmic drug. So far, for the last six months since having the pacemaker implanted and taking the Dofetilide, I feel great with no AF at all and full of energy like never before. Incidentaly, I had the sleep study done recently, and I was diagnosed with severe sleep apnoea, which might have played an important role in my AF disease all these past decades, but I was unaware of it. I will tell you, that my fantastic improvement is also due to my having wonderful nights of restful sleep with the help of the C-Pap machine. As a final statement to asure people that AF doesn’t kill, I will turn 85 in a couple of months and have been dealing with AF for more than half of my life, and AF hasn’t killed me yet.

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Reassuring to hear how the pacemaker has worked after all that has gone before.

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Actually, the pacemaker was not implanted to help my AF, but to replace my old natural pacemaker that had started to malfunction from old age, and was causing my heart to beat too slow. All anti-arrhythmic drugs slow down the pulse and cannot be prescribed if it is already slow, because you can have very serious consequences, including death. So, in order for my doctor to be able to prescribe the anti-arrhythmic drug, he had to protect me from developing a more dangerous slow pulse caused by Dofetilide. The pacemaker will not allow my heartbeat to fall below 70. So far, Dofetilide is keeping my AF away. If I didn’t have a pacemaker, I wouldn’t be able to take any anti-arrhythmic drug.

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Very very fortunate for you, they started me on Tikosyn, first dose converted me to NSR and the second dose caused a cardiac arrest. My heart rate was in the 30’s previous to being given the drug. That rate was caused by propafenone previously given. My normal rate had always been 48-52.

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They made a gross mistake, Tikosin should not have been given if your heartbeat was that low, because Tikosyn will slow down the pulse even further until your your heart stops. If the bradycardia is the result of sick sinus syndrome, a pacemaker should be implanted first, to make sure the heartbeat won’t drop to dangerous levels. Tikosin is a very effective anti arrhythmic drug, if used with caution.

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Yes, my daughter is a cardiac nurse at a different hospital. She said I was very lucky not to have ended up on life support, in addition I had previously been out of the room unmonitored having a mri on a different floor. I was only back in my room 10 minutes or so when the arrest happened. My heart rate was too low to be started on that drug😵

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Tikosyn is a wonderful drug if used with the proper precautions. No other rhythm control medicine compares in effectiviness. But it can be lethal if used carelessly. That is why its use is not widespread. It replaced ablation in my case.

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Awesome!!!!! Flecainide worked great for me but caused vtach on stress test. They took it away. 😯

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Unfortunately, all rhythm control drugs have dangerous side effects. You will probable become a good candidate for ablation.

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In flight today to number 1 heart center in US. Cleveland clinic. Jan 05

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You have chosen an excellent facility for a consultation regarding you AF. Please keep us posted about what will happen next.

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My ablation is Jan 05 with Dr Patrick Tchou. Cleveland clinic. You can watch his video on line. Will update how successful. We will see🙃

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Good luck spoiler.

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That’s a long history with AF and it must be a wonderful feeling to get your energy back and feel good after a proper night’s sleep.

Thank you for sharing your experiences and long may you continue to be well.

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Actually my recent complaint about having low energy, was from my natural pacemaker not doing a good job from being too old. After the implanted pacemaker took over the pacemaking chores, my energy has been restored. It has nothing to do with AF, that is being kept away with Dofetilide. I live in the US, I don’t know if Dofetilide is available in UK. It works better than any other anti-arrhithmic drug. However is a drug that requires 3 days of heart monitoring in a hospital while getting the initial doses, since a dose too high could kill you. In addition, it has bad interactions with many medicines and you have to be very careful using it. Nevertheless, it is very effective in keeping AF under control. No other anti-arrhythmic medicine has this level of success. It’s a non invasive alternative to ablation.

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great to hear your story- you've done very well and it's a comfort to us all

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What an intriguing story. 50 years of paroxysmal AF, without progressing to permanent. Cox Maze working for 7 years. No rhythm control until age 84. Highly effective CPAP.

And seemingly without ever taking an anticoagulant.

A lot of lessons in there !

Happy New Year tachp

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Thank you Badger, I omitted to mention that only after the return of the AF 2 years ago, I was placed on an anticoagulant (Eliquis). Prior to that, I was on a baby Aspirin daily. The anti-arrhythmic drug was started only 6 months ago. I never felt disabled by AF and when it came, I would just take it easy and was never afraid, I have never worried about it or become anxious expecting the next episode, practically I was too busy in other more important activities to be checking my pulse obsessibly. I would let it run its course. I was only careful about avoiding the known triggers. I have to admit that I procrastinated for many years doing something about my sleep apnoea, because the idea of sleeping with a mask never appealed to me. Now that I use it, it doesn't bother me at all and regret not having done it 25 years ago, perhaps the AF would have never returned. So, I strongly believe that there is life beyond AF. To me, it’s just a nuisance and feel grateful not to be affected by other medical conditions really bad, that could have sent me to the grave a long time ago. I always considered AF to be a noisy guest in my body, not an enemy that came to get me. Happy New Year to everybody. Cheers !

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Great post, and like you I feel the same, having put up with this condition for many many years, been through the mill, caused a stroke, had breast cancer plus so much stress though the years I am still here, no AF or PAF doesn't kill you, you just find a way to live with it lol. The guy who invented the Pacemaker certainly did us a great service.

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Funnily enough I met the wife of the first cardiologist in UK to use pacing in the summer - lovely lady who told me all about the first pacing which of course was not an implanted one because there wasn’t the batteries to support it. She herself had a pacemaker, lovely lady and a talented painter.

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They are really small today, and really do change lives for the better in most cases, of course there will always be exceptions to the rule but I am so glad I have mine and can now lead a normal life without the stress.

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Truly inspiring post 😄

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Good on you - I do think sleep apnea is well under Diagnosed and well known companion of AF. I rely on my CPAP and have t had night time AF since I started using it 3 years ago,

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thanks for sharing your story. it gives real encouragement

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Can I ask what treatment you had for your apnea

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Sleep apnoea requires the use of a C-Pap machine that forces air into your partially obstructed airway, to ensure proper oxygenation of your brain. You have to be diagnosed first at a Sleep Clinic.

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Apologies if you have previously answered this question. Are you currently prescribed a 'blood thinner' or NOAC? Your response to MERGELWEG's 'SUPPLEMENTS' post prompts me to ask. Thanks.

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Yes Chrysalis, I take Eliquis (Apixaban). Apixaban like any other anticoagulant medicine should not be combined with drugs that also increase the bleeding risk, such as drugs that contain salicylate; this includes many non steroid antiinflamatory over the counter medicines for pain, Pepto Bismol, Magnesium salicylate and others. They say that fish oil and Omega 3 also increase the bleeding risk, but many well conducted studies have failed to demonstrate that the association with Apixaban is dangerous. The many health benefits of fish oil superseed any small risk. Like all drugs, the manufactores have to list by Law, all and everything that might cause some negative interactions with the drug they make, in order to protect themselves from liability. Therefore, not everything they mention, has clinical significance. Of course, you doctor should approve any combinations of drugs. Pharmacists don’t have clinical experienece and they can only repit what the drug manufacturers say.

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