The wildly beating heart, fatigue and other debilitating symptoms are well known to the many millions of people impacted by atrial fibrillation. Some of those who have afib may have no outward symptoms, but are still at risk of serious and long-term damage to the heart.
Symptoms or not, rate control is the common treatment of choice, especially from those healthcare providers who are not well versed in afib treatment options. But this treatment sort of suspends afib patients in a “waiting and watching” middle ground, stuck in limbo with a diminished quality of life and an increased risk of stroke.
Yet, the doctors prescribing rate control for afib are just following the guidelines. Rate control medications (typically beta blockers) work by slowing down the heartbeat, but often leave patients in afib. So while rate control may not put patients at risk today, they may suffer the effects years later. What’s worse, though, is that the underlying problem of afib isn’t addressed.
Emerging research shows that allowing patients to stay on rate control could have some long-term, serious consequences. The irregular heartbeats can cause remodeling and fibrosis of the heart, and new research has correlated this afib-related fibrosis with stroke. Even on rate control medications, afib patients may have an elevated risk of stroke because rate control allows the haywire circuitry of the heart to continue causing damage. In addition, a recent study published in the Journal of the American College of Cardiology found that rate control treatment didn’t seem to improve quality of life for afib patients.
Patients often don’t realize why they are taking rate control medication and may not understand that the drugs won’t stop the afib. Some patients may not be able to comprehend the seriousness of their condition because of the brain fog and short-term memory loss that many patients experience on rate control medications. While doctors usually see these medications as benign, patients often experience an energy-sapping, zombie-like feeling while on the drugs. Rate control drugs can decrease the quality of life as much as afib itself.
Elderly patients may have it even worse because the rate control medications often make these patients feel so tired that they can’t walk up stairs or play with grandchildren. Because of this constant fatigue, they may give up exercising and become inactive, allowing their health and quality of life to continually diminish.
And for patients who are paroxysmal, going in and out of afib frequently, rate control just may leave the heart rate too slow when they are not in afib, making them feel miserable.
So, it’s time for new thinking about afib treatments. We need to go beyond the current recommended guidelines. Medicine has discovered better afib treatment alternatives, including catheter and surgical ablation procedures that can restore patients to normal sinus rhythm and prevent debilitating strokes.
By 2050, up to 16 million people in the US alone will have afib. We can’t afford the cost and human toll of continuing to watch and wait.
While medicine MAY HAVE discovered better afib treatment alternatives, it is very important for cardiologists to work together with other specialists to look at the total picture of the patient. My understanding is there is also research out there that shows that people with central sleep apnea and afib have a very high
failure rate with ablations, no small issue. Research dollars going to prevention seem key as opposed to trying to fix the problem after the fact.
I’m curious about long-term studies that show that people that have had ablations live longer and are healthier. I haven’t seen any what I would consider large studies showing that.
The CABANA study is underway, and is a huge, and very expensive, 5-year study that will tell us a lot about the results from catheter ablation. But we don’t have much long-term data yet.
Untreated sleep apnea is a reason that both cardioversions and catheter ablations fail (there’s lots of research on this at our http://stopafib.org site). The impact of treated sleep apnea on cardioversions and catheter ablations has not been studied, as far as I know; but logic indicates that treating it should yield better results, and anecdotally that is what many patients say has happened with them. We do know that treating sleep apnea is less likely to reverse afib, but can decrease afib burden.
Prevention is very important, and there are tons of prevention dollars currently going to heart disease and other conditions (such as the community transformation grants in the recent healthcare legislation). Preventing heart disease is truly a key to preventing afib as at least 70%-80% of afib is related to underlying heart disease.
My Wife went through a Catheter Ablation, at the suggestion of her Cardiologist.She was sent to a “Specialist” in Van Nuys for the procedure.
In her case, the procedure was a “bust”. A small whole was made in her heart wall, and she spent months, having fluid cleared from her chest via taps. She was completely miserable and would not consider another attempt. Everyone involved was sorry; but that did not help her very much. She is working with her various medicines for control.
Just wanted to make the point that the Ablation Procedures do not always work
as advertised.
Donald L. Mallick
@donaldmallick Don, I agree that they don’t always work, and sometimes they go very wrong, like in your wife’s case. I’m truly sorry about what ya’ll have been through. Unfortunately, everything medical–drugs and procedures–has some adverse events. She is not strictly on rate control medications now and being left in afib all the time, and that was the point of the article. I should have called out rhythm medications in the piece, but kind of presumed that was a given. I’m just very concerned about those who are left in afib long term because we are starting to learn about the ramifications of doing so.
Warmest regards to you both,
Mellanie
@mellanie @donaldmallick
Mellanie: I’m interested in the following remark in your response to Donald Mallick: I should have called out rhythm medications in the piece, but kind of presumed that was a given. I am unclear what you are suggesting by this. Are rhythm medications (propafenone) also undesirable, in your opinion?
@yoyomar @donaldmallick
No, I meant that I should have mentioned rhythm medications as an option for getting out of afib and into rhythm. The point is that I believe, based on the latest research and the impact rate control has, that we need to get people out of afib and into normal sinus rhythm. Sorry for the confusion. Thanks for asking for clarity.
I was recently diagnosed with afib. I had an ablation six years ago for PSVT. At that time, the doctor was not certain if I had afib or if he had caused it. As I was having what I thought was palpitations again, I wore a holter monitor in Dec. It shows I have chronic afib. It usually lasts for less than a minute but there have been times it has lasted for hours. I usually take an extra Diltiazem when this happens. It takes about two hours to kick in though and when it does my heart rate goes back to normal. The doctor now wants me to take Multaq (heart rhythm med) which causes liver damage and liver failure. Also, a blood thinner and a cholesterol med. From what I am reading here, once an ablation is done for the afib, and if successful it is better than meds. I am on Medicare and suspect I have to take drugs and fail before I can have an ablation. I am raising two grandchildren and cannot imagine being in a fog and fatigued worse than I am. I understand the undyling afib must be corrected or my risk or stroke is very high. What is the answer? Take the meds, feel awful, destroy my liver, or just take my chances. I don’t know what to do. Thanks
I hadn’t been to a doctor in 10 years so my wife insisted I have a complete checkup since I was turning 70. I knew all the doctor would find was elevated blood pressure. Boy was I wrong. I knew I had problems by the look on his face when he listened to my heart. My wife commented that I snored and stopped breathing for up a minute. My lab work indicated my PSA was elevated.
A sleep study confirmed severe sleep apnea. A RESMED S9 and pillow mask solved the sleep apnea. My wife was absolutely thrilled. Very quiet white noise replaced my snoring and lack of breathing.
A prostate biopsy confirmed cancer. Advanced radiation therapy is now available in Austin, TX, The treatment was actually fun and I looked forward to going every day. My PSA is still going down and I am about 11 months out from the end of the radiation.
My third problem, AFIB, did not prove to be as easy to defeat.
I was referred to an EP Cardiologist who went through the usual steps. It was determined that I have been in AFIB continuously for about 5 years. My only symptom was fatigue which I always thought was due to the stroke I had when I was 55 years old which affected my balance.
I had 4 cardioversions that each lasted less than a minute. Rate control brought me down to acceptable numbers and I was told that this is where I will stay. I asked about Catheter Ablation and was told It was too risky for me. I was old and being in rhythm would not increase my quality of life.
Thanks to Mellanie I knew better and sought out the best EP group in Austin. I found them and a doctor who said I was a good candidatre for an ablation but it would not be easy.
I am 4 days out from my ablation. The fatigue fog is gone, I feel great, St. Davids hospital in Austin is fabulous. Thanks to Mellanie and stopafib.org I had the knowledge not to accept standard guidelines and accept my fate.
Being in sinus rhythm does make a difference in how one feels.
Barry
@barrypatton Barry, Thank you so much for sharing your story. I hope you’ll stay in sinus rhythm always.
I agree with this article. My afib started when I was 49 and got very bad at 57. I went on rate and rhythm medication and my quality of life went downhill. I would have preferred a medical procedure but my EP said I needed to fail the medical approach first. When I went on the highest dose of flecainide for the last year I was an emotional zombie and had no zest for life. My EP agreed that I failed the medicine because of my side effects and I had a TTmaze and then left atrial ablation for flutter. Afib/flutter is gone and I have my life back and I take no meds. I feel like the medical approach cost me two years of life that I could have had if I had gone straight to a medical procedure. I caution everyone, however, to shop around, only go to the best, and not listen to all the non-doctor “experts” on message boards. I kept going to doctors until I found the one that I knew was the best and had a proven success record. Being young (relatively) and very healthy saved me when I was taking the meds, I can’t imagine the effect they would have had on me if I was 75. I think that insurance companies need to change their policy and have the doctor decide what is the best approach for each individual.
@dsdoane I could not agree with you more. It should be up to doctors and patients to decide what is best, which is generally also the most cost effective over the long term. I’m so glad you have found a solution, and sorry you lost time fooling around with meds that didn’t work for you. I hope you’ll be afib-free forever.
I agree. I am 36 years old. I had a catheter ablation 1 1/2 years ago. Prior to that, I was on flecainide, coumadin, and Ativan (assuming anxiety threw me into Afib). My quality of life was terrible prior to that because of the Afib alone. I went undiagnosed with paroxymal Afib for about 3 1/2 years before I had a particularly bad attack at work. When I called and described my symptoms to my PCP’s nurse, she told me I was having symptoms of a heart attack and needed to go to the ER. It wasn’t a heart attack, but Afib. Once I met with the cardiologist and he described the typical treatment meds, I thought, “GREAT!” I finally know what this is and it is going to stop. It didn’t stop. My qualify of life just became worse, and I gained 35 MORE pounds. I gained weight prior to beginning the meds because I was so exhausted and became completely inactive then the meds made it worse. Luckily, I only remained on the meds for just under a year before the ablation procedure. I’m free of medications. I recently started to have occasional palpitations/flutters, but they are gone before I even realize it and I have none of the fatigue, dizziness or headaches. I will be following up with my cardiologist regarding the recent flutters, and I understand that there is a chance that a 2nd ablation may be necessary, that was explained prior to the first procedure. But, I will gladly undergo a second procedure before ever going back on the medications.
@KerryMurg Congratulations for finding your solution. Thanks for sharing your story with us.
@KerryMurg Congratulations! I am 30 years older than you and can not imagine going through all of that at your age. I am now having more Afib problems and after reading how meds affect people think an ablation would be better.
Have had a-fib for approx 10 yrs (am 74.) I just had ablation#2. Both ablations were done at very prominent AF Clinics, Immediately after ablation #2 my a-fib went permanent and breathing is awful. How does a-fib go permanent by having an ablation? I can understand no improvement, but permanent? Anyone have a similar experience?
Can you recommend a doctor to perform an ablation for afib on me? I live near Concord,NC.
I live in Mooresville,N.C. I have had Afib for five years and it has gotten really bad in the last month…Been to the doc three times in three weeks,I am on mess for it but I have had48 hours of peace(normal heart beats) in the last month!!!!! Just searching to find out what else I can do!!!
I am 39 and had an ablation done about 7 months ago. After the ablation I had to have a pacemaker implanted. I have been on medicine and was taken off and then put back on and now the doctor just called and said I need to come in next week to have my heart shocked to try to get the rhythm corrected. (My monitor for the pacemaker sent over transmissions showing I am still in A-fib.) I am alittle confused right now. The medicine I was taking at first wasn’t controlling the A-fib so she did the ablation, the ablation didn’t work and then the pacemaker had to be implanted and now that isn’t working or it’s working but not correcting the A-fib its correcting the slow heart beat from the ablation? The ablation caused my heart to beat too slow and that is why the pacemaker was needed – so I am guessing the pacemaker has nothing to do with the A-fib? The doctor said that after the shock treatment I will go on a rhythmic medicine to keep my heart rhythm corrected. Now that I have said what I know I need someone to explain all that to me if you can. So does that mean I really never needed the pacemaker?
Thanks – Any information would be so helpful.
Thanks for sharing your story. You may also be interested in sharing on our StopAfib.org Discussion Forum. To get to the StopAfib.org Discussion Forum, to go: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25.
Melissa
Hello I am 39 year old male and. Was diagnosed with Afib about 11 months ago. I went to the doctor to have a mole removed and my doctor discovered I had a resting heart rate of 150. The following week I was sent for a Echocardiogram to see if I had any heart valve issued. The test showded that I had no structual damage to the heart but that due to the high heart rate my heart and suffered a loss in pump fuction. I believe someone my age is supposed to be anywhere from 51-57 percent of pump fuction. I was at 47 percent. Basically my heart was tired from 150 beats per minute for however long a period of time. The interesting thing for me is I did not experience in palpataions or any real symtoms other than fatigue. I figured the fatigue was related to the fact that I was 290 pounds at the time. Anyway to slow down my heart rate my doc subscrided atenollol. After being on that for 6 weeks I returned for a follow up echo and told my pump function returned to normal. A average resting heart rate for me is 40-60 bpm. After my 2nd echo my doc said that my afib was gone, he thought it was I had stopped drinking and had lost a lot of weight. I went about 4 months without drinking and lost 70 pounds with daily exercise. Unfortunetly a routine follow up with my primary showed I was back in afib. Confused by this my primary refererred me to a electrophyologist whos primary focus is on the electrical part of the heart. At this point im excited to see this guy and fix my problem. Before my appointment I did my resesrch, finding that cathater ablation can possibly cure afib. So I go to the apponitment and he tells me that since I dont have high blood pressure, no heart disease , no diabetes, and no prior stroke that I very unlikely to have a stroke. But with that said I have a 1-3% higher risk of stroke compared to someone my age that was completely healthy.
His recomendation was that my risk was not high enough to consider the ablation at this time. My response was no, I want to do it. My Thinking is that if the ablation is sucessful even if for only a couple years, during that time my risk for stroke is back to normal. His response was that cathater abation is for symtoms only, to improve daily life, but does not limit or reduce your risk of stroke if you have afib. So basically my condition can not be cured and will more likely get worse. My afib comes and goes. Its weird but only after being put on the attenollol did I notice the strange heart beats peridically. Even when my heart rate was at 150 resting I felt nothing. Somy docs treatment program is 1 50 mg attenollol which is a betta blocker and 1 asprin a day. So im in this grey area of waiting for things to get worse. Sucks!! I have no support and have yet to find someone my age with this problem. It would really help to talk with someone thats around my age about afib. .
My last communication with my cardioligist was he told me to wait for technology to improve.
Hi Art, I’m sorry to hear of the struggles you’ve been having with afib. You definitely aren’t alone in having afib at your young age; we’ve known too many people who have it or have had it at such a young age, or even younger. You may be interested in sharing your story on our discussion forum. To get to teh StopAfib.org Discussion Forum, go to: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25. Additionally, people on our forum would probably be more than willing to share their experiences with you, and what they would do in your shoes.
Melissa
hi
i have had af for about 15 years. in that time i’ve been on beta blockers and aspirin, i still am. i had an ablation last december, it didn’t work, with a 30% success rate, not surprising. i did a bit of research on the net and came across a surgeon, dr sanjiv narayan, an english surgeon working in the us, who had developed an ablation procedure with an 86% success rate, and another big positive is that you’re anaesthetised for only 20 minutes or so compared to the several hours of the other ablative procedure. i’ve followed it up and yesterday was accepted for the new procedure. it is very new and may not be available to you yet, depends where you live. worth a look. http://www.stopafib.org/newsitem.cfm/NEWSID/410/atrial-fibrillation-FIRM-catheter-ablation/Dr-Sanjiv-Narayan-video-on-focal-beats-rotors
Ant,
Thanks for sharing your story about going forward with the FIRM ablation. We would be interested to hear how things go for you. Would you be willing to share your story on our discussion forum and keep us updated to your progress with the FIRM? If so, to get to the StopAfib.org Discussion Forum, go to: http://forum.stopafib.org. To post or ask questions, you’ll need to register if you have not already. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25. Thanks! And good luck with your ablation!
Melissa
Great information sharing Blog site. I plan to research your information on “FIRM ablation procedure”. Thank you.
I was officially diagnosed with AF 2 years ago. Let’s just say I’ve been through the mill and in general disgusted with the medical community’s lack of knowledge about this condition. Finally, I found the one bright light…Dr. Narayan. He performed my FIRM ablation 3 weeks ago. Although we have to wait 3 months to know if it was successful, I have hope.
My mother, 81, diagnosed with afib feb this year. The doctors keep trying to adjust the med doses to get it under control, but the side affects are terrible and continually change. Now she shows many
symptoms of liver disease. Ablation was never mentioned as an option. I was planning on looking for 2nd opinions on my own when I came across your article. We are North of Chicago. A Chicago or Milwaukee location would work well. Do you know of any. What are the reasons that would make my mother not a candidate for this?
Hi John,
Often, doctors don’t do ablations on those over 80 unless the patient is extremely healthy. It is usually judged on a case-by-case basis. Please join us on our discussion forum where you can share more and we can help you identify options. To get to the StopAfib.org Discussion Forum, go to: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25.
Melissa
I am concerned about the general acceptance of AF in medicine. I had chronic heart failure, which included ongoing AF. I have done all I can – no drinking, no smoking, excellent diet, right in the middle of normal BMI, exercise an hour a day but still get 2 or 3 day episodes every 2 to 4 weeks. When I have an expisode, if I even bother to go to the Doctor’s, I get and ECG, have a brief chat, nothing is done and I am sent on my way. I am not on medication as it makes my heart tooo slow. I have been on a waiting list for 18 month for ablation but keep getting pushed by “urgent cases”. The carers are OK with an episode going on for weeks or months.
I work full time, in a very demanding, stressfull role. Yet, even when my heart is trying to escape out my throat, I am still expected to front up for work, concentrate all day. If I had a sore back and did physical work, I would get 3/4 of my salary until it was fixed. As I do mental work, I would get nothing even though my cognative ability is impaired during episodes. If there was not the possibility of it being fixed by the ablation I would give up and live a comfortable life, focused on managing the condition. I would not have to worry about long term finances etc as I will have no memory and dementia in 10 years if nothing is done anyway.
The incidence of this condition is very significant in the population. I believe that Health Care Practioners need to develop stronger protocols for dealing with AF agressively, not just see how it goes on this medication, or learn to live with it, or have ablation but as a low priority ellective surgery.
It makes financial sense as well. My mother had what she called “heart flutters” for 15 years and ended up with complete short term memory failure. May not be associated, but a good chance it is. Instead of say spending $20,000 on treatment protocol for the “heart flutters”, the system will now have to pay $80,000 a year to look after her.
Barney,
It seems that your doctor is not at all helpful (which is not the norm), so you may want to consider a second opinion or even changing doctors completely.
You are not on rate or rhythm control medication, but are you on a blood thinner to prevent a stroke? Having heart failure and afib simultaneously increases your risk of stroke.
In your mother’s case, her heart flutters could have been afib, and untreated afib can result in dementia. You may want to tell your doctor that you need something done right away so that that does not happen to you, too.
Good luck to you in getting something done.
To make a very long story short,my wife had Afib for years and they couldn’t figure out what it was. Finally 2 years ago a NP got involved in a hospital stay and actually gave it a name,Atrial Fibrilation. Now we had a name and were told it could be treated. Well after more doctors,meds tests and god knows what else she was still not feeling well but kept getting the usual excuses and non existent concern from the doctors. The NP tried but obviously the doctors were above her. My wife came home from an appt on june 18,2013 and said I don’t feel right but the usual doctor add more aspirin,all the tests were good reasoning. Afib carries one of the biggest risks of blood clots because of what it is and does.She had just been checked and all was supposedly ok. Her Chadds score was low,no need for alarm.On june 25,a major stroke hit her out of nowhere and bolcked the main corotoid artery to the left side of her brain.It all happened within 15 seconds. She was rushed to the hospital and the doctors there had found evidence that damage had been done before in TIA’s and mini strokes that the other doctors had not picked up on.This had been going on for a long time untreated properly.After all the doctor visits,different doctors test and everything else this was the outcome. The NP was right,but the doctors knew it all.On june 30th at 5:pm we discontinued the respirator. Her chances were little to none,1% of 1 % of 1% of walking,talking,eating dressing and doing anything on her own,along with 1-2 years of rehab the doctors said. .At 8:57 my wife,best friend,and wonderful mother to 2 bio and 7 adopted children passed away.So I guess my point to any who are dealing with Afib is ,don’t wait,if you are getting nowhere with your doctor,get loud.speak up,change doctors do whatever you need to so you can have a chance at life that my wife unfortunately now doesn’t have.She had finally decided to change doctors and was to have an appt with a new one but never made it. On friday of that week she was to see the cardiologist for a follow up but had the stroke on tuesday. The cardiologist has since called to offer his condolences,and to let me know they did everything they could and that she wasn’t a high risk,the chadds score said so.I told him to take his chadds score and do you know what with it as well as a few other things I won’t say.God bless all who have Afib,whatever you do don’t wait. My wifes life and mine changed in a matter of 15 seconds with no warning at all and life as I knew it was gone. We had been together for 43 years and married almost 40,,sept 16 2013 would have been 40years.Don’t let Afib change yours,do what you can whil you can. Paul
Paul,
I’m so sorry for your devastating loss. Thank you for sharing your story; I hope it will motivate others to take control of their healthcare and seek a different opinion if the first opinion isn’t helpful.
Melissa
Mr. Silva, I am truly sorry for your families loss. I am sure her health was an area of concern for sometime and still the medical system failed her. I can only imagine the upside down fog your family must be living in. I’ve been trying to prepare my family and myself for the potential stroke or heart attack by making my will, preparing church services, military burial…etc.
My family and I have been going through similar issues for sometime. It seems every six months or so I am in the ER, the doctors say nothing of concern detected beside high blood pressure and low pulse(around 43). Earlier this year I was told it was Dysautonomia and POTS. I thought the skipped beats were just PVC or PAC, I’ve been told not to worry by doctors, but last week I went to ER and for the second time in five years I had a confirmed A Fib. I was told my Chadd score was low.
I was asked to take flecainide but I am not convinced or have confidence in all the doctors I’ve been visited. I went to two cardiologist just to make sure everyone was on the same page now before I begin these new med.
After reading your post I am going to schedule and appt. with my electrophysiologist, but more importantly I will continue to make everyday with my wife (of 28 years), children, extend family and dog count.
Paul, once again thanking for sharing your heartfelt post. I will share your pot with others.
God Bless,
Yuri
Hello – I write for my 87 yr. old mother who has a-fib for a few years now. She has a pacemaker too to keep her heartbeat from going below 60 beats a minute. Her rate used to go so low she would pass out. She is on many meds now including teekycin (sp) and eliquis as a blood thinner. My mother admitted she has episodes every day. Sometimes it lasts for several hours a day, and other times only a half hour or so. I have read that this is a progressive condition. She usually gets a back ache after an episode, but we cant’ really get too much information as to why she gets the back ache. She has to lie down for a few hours after that happens.
I guess my question is this: She is 87 now and has had a-fib for 10 yrs. or more. How much can the heart take and where does this condition go after suffering with this for so long? The doctor says her heart is strong, but I know she is suffering almost every day. She does NOT eat anything that may trigger an episode, but still it happens. She also takes metropolol, digoxin, and a few other meds for the heart.
The doctor never mentions abalation or anything like that. He’s never mentioned any other heart disease with her. She does have hypertension and takes meds for that. He does an EKG and she’s had stress tests. He says her pacemaker works 91% of the time. That’s about all I know now. Where does this condition go after all these years of suffering?
Hi Sue, Thank you for sharing your mother’s story. Unfortunately, it’s a story we hear too often. You may be interested in joining the discussion over at our StopAfib.org Discussion Forum: http://forum.stopafib.org. To post or ask questions, you’ll need to register. Instructions for registering and getting started are here: http://forum.stopafib.org/index.php?showforum=25. Our community may be able to steer you in a helpful direction.
Melissa
My husband was in afib one year and felt terrible got out of breath every day he had a cardioversion whafter 2weeks he was back in afib ok so he had another conversion and was put in amioderone and he was allergic to it the doctor called said abnormal lunge xray stop amioderone. Ok he stopped it now his heart is I. And out of afib I don’t know what’s next .
Hi, I’m sorry to hear about your husband. You may be interested in joining us over at our Patient Discussion Forum to post your comment and concerns. It is a great space to get insights and support from others who have been there. Here is where you can find instructions on getting started.
Here’s what I think. Re: Atrial Fibrillation (and after two catheter ablations which did nothing, I’m still not an expert) BUT I personally believe – and thus far nobody has actually taken me on – that research into a “cure” for atrial fibrillation will never produce that cure. These days, researchers are paid far too much to sacrifice their jobs by finding cures (and I say this knowing a good friend who has been a medical researcher for several decades working on a cure for a far simpler disease.). After two (TWO!) catheter ablation wastes-of-time consisting of hours spent on an operating table, I have come to realize that the medical research community would be FOOLS to find a cure for A/F.. Think of the surgeons who would then be without the mega-bucks jobs! This means those with something like chronic A/F have only the choice of ineffective pills (i.e. some hope) or taking the risk of a stroke…or worse. When will things change? When will researchers only be WELL rewarded once they’ve found an effective cure, and not before?
I am approaching 75 and had a successful ablation 3 years ago. I was on Tikosyn before the procedure that got me out of afib for 4-5 days, then back in for 3-4. It took about 3 months for the electrical blocking scars to form, but after they did, I have been in normal sinus ever since, with zero episodes of afib. I was in constant afib for more than 7 years, but it turned out to not be permanent. I also have sleep apnea and have been sleeping with a CPAP every night and do not take Tikosen. I now do a heavy workout (2 1/2 hrs), 3 times a w eek, with a 45 minute stationary walk raising my heart rate to 145 (85%, training for age 45).
I had an angioplasti (no stent) at 50, a heart attack at 60, a stroke at 64 (untreated afib) and an angioplasti (with stent) to cure claudication in right leg.
Don’t give up. I am healthier at nearly 75 than I was at 50.
Hi Terry,
Thank you for sharing your story and we are glad to hear that you are so healthy now. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php?act=idxhttp://forum.stopafib.org/index.php?act=idxhttp://forum.stopafib.org/index.php?act=idxhttp://forum.stopafib.org/index.php?act=idx) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story there, and you may also learn a lot from others who have already shared their experience.
Thanks for the hope…I have had Afib for five years..I t has really gotten worst in the last two months..out of the last three weeks I have had 48 hours of relief..i can’t even walk to the car without getting out of breath!!l. I am searching the web to may find some help..
I had catheter ablation last year and it was the worst thing that ever happened to me. Ever. I suffered from post-traumatic stress disorder for a while and I still am depressed today, a year later, because surgery without anesthesia feels like a torture chamber. Worse: The afib returned, along with other types of arrhythmias actually. I now wish I just stuck to medications.
I agree that living with afib is not easy. I also join you to call for an alternative cure. But it repulses me to see that you tag “catheter ablation” in your article -as if it is the proposed solution. It is not. It doesn’t help and it adds insult to injury.
I’m 42 yes old and was diagnosed with paroxysmal tachycardia in 2010. I was in and out the hospital every week before my diagnosis, the doctor changed and combined meds and still no changes so i stopped taking them after a bad episode 2012 and i was doing fine until i got the pneumonia in 2013 but it wasn’t as bad like before. May 2nd 2014 I noticed that my heart started skipping beats and I went to the hospital my heart rate was in the 40’s and the doctor said it was from the flecainide that I was prescribed to control my heart rate, didn’t bother to ask me if I was taking my meds and send me home…May 5th 2014 while taking a bath my heart starting fluttering and skipping beats I almost fainted I ran out the bathroom naked and screamed out for my son and he helped me get dressed and rushed me to the hospital…I had a heart failure was asked by the doctor in the ER if anyone has ever told me that I had a heart failure before I said no only a few mild heart attacks but they didn’t know when they occur.. So he said well he just did and if they ever mentioned a pacemaker seeing that I have been coming to the ER only a weekly to monthly basis…I said no…was admitted in hospital did a 3D Echo and a 24 hr holter monitor exam…now my heart is beating slow and they said my heart is fighting itself… They can’t give me nothing to speed it up and slow it down…my cardiologist said “. Your heart is fine…I listened and viewed the echo exam” and this the same doctor that diagnosed me in 2010 and gave me the results for the skipping a beat results and still wants me to take the flecainide…to this day I haven’t taking those meds and as I sit and write this my heart is skipping beats for the pass 3 weeks now. I am exhausted I can’t sleep because I wake up grasping for air. I need help plenty help.
Hi, Charisse,
I’m sorry to hear about your experience. You may be interested in seeking a second opinion if you’re not feeling better. Also, you may be interested in sharing your story in our afib discussion forum where you may get insight from other patients. You can get started here. Wishing you sinus rhythm!
Melissa
My mother developed AFIB immediately after she was prescribed Azithromycin for a lung infection despite FDA warnings in 2013 about it causing arrythmias especially in the elderly. My guess is the mycins are causing AFIB in millions of people. Great racket if true. Give millions AFIB then treat millions for AFIB.
I too got A-Fib from arithomycen and predisone 20 mg a day for 10 with no tapering!!!!!!
I’ve had every med there is and my BPM is 139, nothing brings it down. I’m going to stay on eliquis and take 2 aspirin a day. Done with the drugs that do nothing!
Hi, after having my mitral valve repaired in 09, and then replaced in April of 2014, I’ve developed atrial fibrillation. I’ve been converted once, and I’m on the beta blocker metoprolol 100mg 2x/day. My cardiologist is a superstar. I’m also on warfarin, it hasnt stabilized yet. Today, it came in at 1.9. My question is I’ve been going in and out of afib all week. Does this warrant a trip to the er? And usually, I wouldn’t pay it any mind because its something I’m learning to live with. But with and PT so low, I’m wondering if I’m more at risk. Anyway, thanks. 🙂 Oh, I’m 31F.
Bekki, you may want to ask your question in our afib patient discussion forum. There you’ll learn from others who have been managing their afib, and perhaps you’ll get more insight about how to proceed for yourself.
Melissa
Please, for those of tou who have found good DRs, can you please add their names and locations?
Im 52, had afib off and on since my early 20s. Usualy brought on by relationship stress combined with standing from a resting position. I think it occurs during heavy exhale and internal pressure in abdomen when getting up. I also get raised heart beat rate when waking up from a nap as if i had been startled. Never painful events but i can feel the falump bump in the center of mt abdomen and just below my sternum. I am terribly aware of whats going oncincthat region all the time. If i have a gas bubble, i check my pulse. Im cautious getting up alwsys and add extra breaths before. Strange that it doesnt happen during exercise. Only when reclined snd getting up. Im on cartia 180 time released. But im not sure if it is really work8ng. Amneodarone was awful for me. Major mood swings which contributed to the loss of the best job ive ever had. Poor quality Obama care insurance prevents me from seeing my cardiologist. No money since loss of job. Just Cartia and hoping AF does not come back. I feel that i dont have mych time left.
Warren, Please come join the discussions on our discussion forum to see if folks may have ideas that can help. The forum is at http://forum.stopafib.org – you’ll need to register in order to post and reply. Mellanie
Hello. II’m, almost 82 and have had afib for years. Metropolol worked for a long time but now I am in afib all the time. I’m scheduled for an ablation in three weeks. I hope that works because I’m at my wits end. Worse that at my wits end – if the ablation doesn’t work I don’t want to live like this.
Joan, I’m sorry to hear it’s got you at your wits end. You may be interested in seeing if our patient discussion forum can offer you any insight. Good luck with your ablation.
Melissa
At age 70, my heart went into AFib, I was considered to be a candidate for Sudden Cardiac Arrest. Cardiologist performed several cardio-versions to no avail. Following day he installed an ICD and my heart went into SR almost immediately. At 75, the batteries in the ICD were approaching the end of life and my ICD was replaced. At 78, my heart went into AFib again and I went through a cryogenic ablation procedure that was successful for about one month. Then my heart went into AFib again and my electro-physiologist did another ablation using RF. Again my heart went into normal SR. Three months later my heart went into Atrial Flutter. Was hospitalized for four days and put on Tikosyn. Went back into normal SR. At age 79, the ICD batteries were approaching their end of life and a third ICD was installed. Heart has been in normal SR for the last 18 months. I still walk a minimum of 2 miles per day, drink a minimum amount of coffee, take Metroporol, Lisinapril, Tikosyn and Eliquis. Eat healthy, My ejection fraction has improved from 32% to 59%. The only supplements I take are Vitamin D3 (Alzheimer’s Prevention) Vitamin B12 (sub lingual) I wear a Fit Bit 24/7 so am very conscious of my Heart Rate. I have notice that over the last six months, my resting HR has dropped from 68 into the 50’s and some mornings it hovers at 48 BPM. I live in Oklahoma, but have had all my heart procedures done at St.Thomas Heart Hospital in Nashville, TN. I highly recommend Dr. James H.Baker III, Cardiologist/Electro-physiologist. Dr. Baker has performed hundreds of cryogenic ablations and was a pioneer in the procedure. According to my PCP, there are only 3 places to have an ablation procedure. Cleveland Clinic, Mayo Clinic or St. Thomas Heart Hospital.
Hi Myron,
Thank you for sharing your afib story. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story there and share with others what helped you.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate.
I’ve found that electronics with EMFs bring on AF, including computer use, particularly prior to bedtime. Likewise, hot baths prior to bedtime can trigger AF. Conversely, Neurontin tends to calm it. Good luck (to all of us!
has anyone developed afib due to an underactive thyroid, and being left in a hypothyroid state?
Hi Ruth,
Thank you for sharing your questions and concerns regarding your afib and the correlation with your thyroid. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story there, and you may also learn a lot from others who have already shared their experience. I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope. There are many resources on living with afib that you might find helpful. Best of luck to you! We wish you sinus rhythm.
Joan,,Have you been eating chocolate.I don’t care what the drs say..as long as I don’t eat chocolate..i mean none at all..my A Fib is pretty good
Chocolate, dairy products (all) alcohol, caffeine. It is of interest to me that my triggers for paroxysmal are exactly
the same as my triggers for migraine were. Thoughts?
Perhaps because some foods can have “mixed” properties. For example, banana’s have constipating properties on their exterior, but laxative properties in their gel-like innards. Likewise, chocolate has antioxidants & fiber which act as roto-rooter… but also fat content & caffeine-stimulant which might bring on your fibrillations… does that make sense?
Hi Judy,
Thanks for your comment to Linda. Have you visited our patient forum at http://forum.stopafib.org/? I’m sure your advice and input could help a lot of people living with afib.
I’m a 64 year old male that has been diagnosed with paroxysmal afib about 4 years ago. I have been taking Diltiazem in increasing doses since then, and am currently at 240mg once / day. Every now and then, due to stress, drinking soft drinks, or alcohol, and sometimes for no reason at all, my heart goes up to 150 BPM. Most times I can convert it by doing a vasalva technique. Unfortunately, almost 100% of the time now, my heart switches to an irregular heartbeat for varying lengths of time. Has anyone else experienced this?
Hi Phil,
Thank you for sharing your afib story and your symptoms. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate.
I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope. There are many resources on living with afib that you might find helpful. Best of luck to you! We wish you sinus rhythm.
I have a question. My mom is 82; My father has recently passed and now she’s probably going to need a pacemaker for her afib. But she’s telling me she’s not going through that..If she does not get a pacemaker and stays on the eliquist she will still have a high risk of a stroke?
Hi Denise,
Thank you for sharing your afib story and your symptoms. You may be interested in joining our patient discussion forum (http://forum.stopafib.org/index.php) to connect with other patients who collectively have a great amount of knowledge and experience. You may want to post your story and questions there, and you may also learn a lot from others who have already shared their experience.
You’ll need to join to see and participate in the discussion. To do so, go to forum.stopafib.org, and click on the big red button that says, “Sign Up”. Once you sign up by registering your email address, your preferred username, and a password, you’ll receive an email to confirm your interest in joining the forum. Click on the confirmation link in that email, and you are ready to go. You’ll be able to log into the forum, read the discussions, and participate.
I hope that you are able to find others to connect with there that can give you advice, suggestions, and hope. There are many resources on living with afib that you might find helpful. Best of luck to you! We wish you sinus rhythm.
My husband recently died w/ the main factor being arrhythmia…aka A-Fib. I’ve called his cardiologists several times asking why they didn’t opt to do the following..either a:
oblation
pacemaker
debrillator
synchronization
They are not returning my calls.
thank you.
Pamela,
There are hundreds and hundreds of different arrhythmias – do you know for sure that it was afib? What was the actual cause of death? Afib doesn’t typically cause death, though it can cause strokes, heart attacks, even sudden cardiac arrest, that can lead to death.
Defibrillators and pacemakers are not used in the treatment of afib as they are not effective.
It sounds like you need a lot of answers from the doctors. Good luck. I hope you get the answers that you need.
Mellanie
I have had A-fib for ever but have no symptoms except tiredness. Been on metoprolol 100 mg for 15 years.I tried a blood thinner for a few months but did have bleeding and leg pain problems with it, so now on Aspirin and fish oil to help keep my blood thin.. So glad I feel no heart symptoms, I am 73 years old.
Hi Donna,
So glad to hear that you are not having any symptoms except for tiredness. If you see my post to Roxanne below, I recommend to visit our forum (http://forum.stopafib.org) where you can share your story with other patients who might find it helpful and useful – like your experience with the blood thinner and how you are now taking aspirin and fish oil instead.
Thank you so much for sharing. Have a good day!
I had an Afib event 8 years ago and was put on aspirin. I never had one for the next 7 years. This year I had one again, and it lasted a day. Then it went away. Whereas years ago I could feel a flutter in my chest, that no longer happens. I do take blood pressure readings and sometimes my Omron says it detected possible Afib, but mostly it does not detect any. Every time I’ve had a EKG over the past 18 months there has been no problem, and an exam my current doctor did of my heart showed no problems.
But on my last visit (12 months after my first) he recommended that I go on a blood thinner.
I’m not sure why since he first said to just keep my aspirin, and I’ve taken aspirin daily for the past 8 years, a full sized one.
Will Medicare cover my seeking a second opinion and, if you can’t answer that, what is your opinion on going on a drug versus staying on just aspirin.
Hi Michael,
I am sorry, but we are not medical professionals so we cannot give you any medical advice. Medicare plans are all different, so that is not something we can advise on. Furthermore, aspirin has been pulled out of the afib guidelines and is no longer recommended for preventing afib strokes. Perhaps you’d like to consider joining our patient forum so that you can connect with others and ask your questions. It is located at http://forum.stopafib.org/. Please email us at [email protected] if you need any help registering or have more questions.
We wish you good health and sinus rhythm.