I’m mad and must post this before I explode. Today alone I’ve answered a dozen e-mails or comments from folks suffering with atrial fibrillation around the same theme—their clueless doctors!
Now don’t get me wrong, there are so many good doctors out there. And the doctors to those folks who e-mailed me are probably very good, too. The problem is that most of our doctors don’t truly understand what afib does to us. And part of it may be that we don’t communicate it so that they will understand. So it’s time for us to stand up and tell them exactly what afib does to us.
Afib takes a huge toll, not just physical, but emotional and financial as well. Not just on us, but on our families, too. Here are just a few of those things.
- Huge medical bills from all those trips to the emergency room, tests, and procedures.
- No medical insurance–once you have afib, you can’t get medical insurance. If you can get it, you can’t afford it because it’s too expensive. (Try $1,600-$2,500 per month and more just for a family of 3.)
- Losing time from work, which means lost income.
- Losing your job, or even having to change careers.
- Losing cars, houses, life-savings, retirement savings, everything!
In my case, my family had to travel with me as they couldn’t let me out of their sight for fear I’d have blood clots and a stroke while off by myself (due to blood clots and a near-stroke with my very first afib episode). Now that’s expensive!
But we don’t talk about the financial impact—it’s just too embarrassing. We have to change that. If doctors don’t know this, they will just diddle around, experimenting, figuring that they will eventually find a treatment that works while we deal with meds with nasty side effects that make us feel like crap, meds that quickly stop working, or being on Coumadin and looking like we’re battered. We’re the ones suffering, and our doctors just don’t realize what it’s doing to us. Give us an afib cure already!
And while they’re fiddling, Rome is burning. Afib begets afib–the longer you have it, the worse it gets, and the harder it becomes to solve. I hear from so many people that just can’t get it solved because they have had it for so long.
As a patient, I tell my doctors that I want to know all of my options so I can make the decision. And I want to research all the pros and cons and talk with others before I do. As my doctor, you should expect no less from me than to be an informed patient. Help me to be so.
I see many folks just going around their doctors and self-referring to surgeons and EPs (electrophysiologists are cardiologists that specialize in heart rhythms) looking for an atrial fibrillation cure. They shouldn’t have to. Our doctors need to work with us as a team to help us solve this problem. We have to help them truly understand how afib affects us and what it is doing to our families as well.
Life is too short to live it in afib.
So, what about you? What have you experienced? Does your doctor really understand and help you solve this problem?
I am a doctor myself. I had a heart attack one year ago and started to get paroxysmal afib. I entirely agree with every word you said. I am suffering just as you are, and my doctors do not seem to appreciate our dilemma.
WHY do doctors NOT believe in blood thinner alternatives like vitamin E and some herbs. Let us try them and test our blood. Not pound the table and scream at us that we HAVE to take the blood thinners. I’m soooo discusted with the entire medical profession. All they want to do is push pills like drug dealers.
Michele,
Blood thinners have been proven effective in clinical trials and Vitamin E and herbs have not. There are no blood tests to prove that Vitamin E and herbs work to prevent strokes. Doctors only trust evidence-based medicine.
Ali,
Thanks for your comments. I’m so sorry you’re struggling with afib.
As a doctor, do you have any thoughts on why doctors don’t understand what we’re going through,or where this problem comes from (med school training perhaps)? Do you have any suggestions regarding solving this dilemma?
One afib patient remarked that if she had one wish, it would be to be cured of her afib. If she had two wishes, the second would be for doctors to experience afib just once so they could walk in our shoes. That would sure change how doctors treat afib.
Mellanie
I just came back from my sister’s funeral. She died of a stroke caused by afib (she was not anti-coagulated, they counted on the medication working as it had for a couple of months, it stopped working, afib, clot, stroke, coma, death). She had been told, and told me “afib does not kill”. Yes? I went to an internist who said to me “afib is no problem, you just take a couple of pills in the morning and you are okay” Yes?
Clueless is a kind description. Ignorance is not only killing us, but also robbing us of quality of life.
Judy,
Amen! “Ignorance is not only killing us, but also robbing us of quality of life.” Well said!
I am so sorry for you and your family. Words fail at conveying my sympathy for your loss.
That’s why I’m blogging – I want to get out opinions that can help. We are needlessly losing loved ones because their doctors are telling them that afib won’t kill them. It’s just flat wrong!
Afib itself doesn’t kill, but the things that afib causes, such as strokes and congestive heart failure, truly can, and do, kill. As your family can attest.
Please keep sharing your story – it can help others. Thanks.
Mellanie
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The cardiologist I was seeing right after being diagnosed with afib was absolutely adamant that afib was not just bad for the heart but for the entire body because of the reduced blood flow. He wanted me to keep trying different rhythm meds until we would find one that worked. Failing that, he said, he would rather see me with an AV node ablation and a pacemaker than in afib.
Now, since an AV node ablation would have put me into permanent afib, I have to believe that this doctor was totally ignorant. Clueless would be too kind a word.
Also a comment to “afib doesn’t kill.” In the hospital after my mini maze I experienced some very bad afib episodes. The first one was particularly violent and frightening. I was lying there, telling myself out loud over and over that “afib doesn’t kill” because it sure felt like I could die at any minute. A nurse overheard me and said “You’re wrong, afib CAN kill.” I answered “well, yes, from a stroke,” to which she replied that there was another way, namely that during an arrhythmia a heart sometimes just stops.
Scary!
HAVING SUFFERED WITH AF FOR 17 YEARS AND HAVE HAD 5 SHOCKS…ABLATION 3 YEARS AGO AND YES ITS BACK!!JUST HAD ANOTHER SHOCK 2 WKS AGO…FINGERS CROSSED, NOT OPTIMISTIC!!!DRS HAVE NOT GOT A CLUE…CONSULTANTS JUST WANT TO KEEP CHUCKING PILLS DOWN YOU AND TO BE GUITE HONEST THEY DONT WORK…DROP YOUR BP AND MAY SLOW YOUR H.RATE DOWN BUT THATS IT!! WHERE DO I GO FROM HERE IF AND WHEN IT COMES BACK.DRS DO NOT KNOW HOW BAD THIS CONDITION IS FOR THE PATIENT …THEY SAY!! ITS A BLOODY NUISANCE…THATS PUTTING IT LIGHTLY.CHRISTINE
Gudrun,
That is scary! So much for the belief that afib won’t kill you.
I’m sorry you had such bad episodes right after surgery while the heart was trying to heal, but am glad you came through it so well.
May you be afib-free forever!
Hugs,
Mellanie
Christine,
I’m sorry you’re suffering so much, and have for so long.
You’re right – doctors just don’t understand what it does to us. It’s far more than a nuisance!
Here’s hoping we can find you a cure!
Mellanie
Hi,
Aorta Valve replaced and a Full Maze Procedure 26 months ago, the Valve replacement worked fine apart from two extraOP’s for fluid but the Maze Procedure was a complete failure and all the Cardio says is “Oh it won’t kill you( I am on Warfarin) but now I am in Permanent A/f and sometimes I feel like just doing my self in because who can I turn to?
The tried me on all of the poisen pills,Cardioversions, none of them worked but always made me feel like crap.
It cost me $42.000 for the maze which was mot claimable with my insurance company and what gets me is the surgeon said that he had a 80 to 90 % success rate for the Maze “Yeah Right”???
Kevin
Dear Mellanie,
At least you are honest an upfront , The Cardios are “Stumped” they don’t know what to do !
Kevin
Kevin,
I’m so very sorry for what you’ve gone through. My heart goes out to you.
I’m so distressed about your failed Maze, and after all the money you spent on it, too! Was it a “cut-and-sew” maze, or did they use an ablation device?
And they say there are no other options? Heartbreaking!
Mellanie
hi!,
My dad was advised by a doctor (electro physiologist) to have AV node ablation followed by Biventricular or dual chamber pacemaker implantation. He was recently cardioverted for Af and had mild blood clot in the brain adn was treated for that. Now i am confused whether to go in for the AV node ablation or is there any way out of it…. He is not on any anti arrythmia drugs ebcause he has both tachycardia and bradicardia. Has anyone here had complete AV node ablation…. It is psychologically very distressing to destroy the AV node and be pacemaker dependednt for the rest of the life… responses appreciated..
Ramesh,
I’m sorry your Dad has afib. Please don’t let him have an AV node ablation until you’ve read our blog post on:
AV Node Ablation: Why You Shouldn’t Have It
http://atrialfibrillationblog.com/av-node-ablation-why-you-shouldnt-have-it/
For other atrial fibrillation treatment options your Dad might want to consider, please read these two sections of StopAfib.org:
Find out about atrial fibrillation treatments:
http://www.stopafib.org/managed.cfm
Find out about atrial fibrillation cures:
http://www.stopafib.org/cured.cfm
To find out more about diet and atrial fibrillation, check out the Lone Atrial Fibrillation Forum in our Afib Forums Links, or here: http://www.afibbers.org/toboards.htm
If you have more questions, just let us know.
Mellanie
Hi Mellanie,
My maze was done while my heart was open to do the Aorta valve replacement, I think they used a curved iron to burn lesions around my heart but I am not sure.
kevin
Kevin,
Again, I’m so sorry. I’d love to know more about where this was done, but I know that is very personal information.
If you’d like to share more info privately, you can e-mail us at:
http://www.stopafib.org/contact.cfm
Thanks.
Mellanie
Had mini maze done on Dec 3, 2007. Cut phrenic nerve to right diaphragm. Lost 55% of lung capacity standing, 80% laying down. Can do no physical activity. Sleep with breathing machine. Has crippled my life. A nightmare for me and my wife.
Hi Mellanie
Here is an interesting one for you to ponder, yesterday morning early about 5.30am I got up and had a cup of tea and read the paper but before I did this I took my usual 50mg Atenolol and my 5 mg Cilazipril along with my Omega 3, after about 15 minuets I felt a little strange and went and checked my BP with was very low and I had gone back into NSR but my pulse was 48 and my BP was 88/57 ! And I remember that the night before going to bed I had taken an extra 50 Mg Atenolol before retiring as I was jumping around a bit and my GP had always said to adjust the Atenolol as I needed to , this meant I had had 50mg at my usual at 5pm the night before , then the extra before retiring and then another 50mg in the morning and what I think has happened is my Heart decided it was time to go back into NSR for a time just as I had taken this extra pill but the interesting thing is that it must have been a coincidence that I converted during the night .
I am still in NSR and I rang my GP who told me not to take my normal 50mg Atenolol last night and I only had a 25mg this morning but all day yesterday I had very low BP and a very upset stomach like Dyspepsia and I am still like it today and still in NSR .
I don’t know how long this NSR will last , the last time was in April and it lasted 3 days with the same upset stomach,when I am in Permanent A/F I do not suffer this stomach upset which is odd don’t you think? Is it showing that Yes I can self convert or is it something to do with the maze 26 months ago ?
My BP at the moment is 117/73 and my pulse is 48 to 50 bpm , I do get the odd missed beats as I did in April but why the upset stomach only in NSR ???
What do you think? ……………..
P.S…….Gone back into A/fib and it is strong and driving me nuts, the Cardio sent me a letter stating that I could not have an ablation as I had already had the Maze and he said I just have to live with A/fib and I should be able to adjust with it , “Yeah Right” , he needs to experience it himself and then he might sing a different tune ???
Regards……….kevin
Drugs drugs and more drugs, stay on Warfin to stop you having a stroke and thats it. Told my Dr im coming off all drugs after my 5th shock not worked and feel much better wIth out them. Still in AF BUT CERTAINLY NO WORSE when im on drugs. BP returned to normal and don’t feel dizzy. Thats 2 wks ago…going to see consultant july 23rd …Watch this space. Christine UK
Kevin,
It does sound like having a higher dose of atenolol in your system caused you to convert to NSR, and when that was depleted, you went back to afib. The medication could be responsible for the stomach distress – we all respond differently.
“Just live with it” is not a helpful answer from any doctor, and getting that response by letter rather than personally is really sad. It sounds like it’s time to find another doctor, preferably an electrophysiologisit that can help you work through the issues and find a solution.
Unless your situation is unusual, you generally can have catheter ablation after maze surgery. I’ll be glad to discuss this further offline.
Mellanie
Christine,
I understand your frustration over drugs that don’t appear to work.
You are staying on the warfarin, aren’t you? I would be concerned about coming off warfarin unless you have zero risk of stroke. That’s especially true if you’re not on any other meds.
So what new info did the consultant visit on July 23 yield?
Mellanie
The comment posted by Dave Samuel on July 10 just broke my heart.
Here’s what he said:
“Had mini maze done on Dec 3, 2007. Cut phrenic nerve to right diaphragm. Lost 55% of lung capacity standing, 80% laying down. Can do no physical activity. Sleep with breathing machine. Has crippled my life. A nightmare for me and my wife.”
Dave and I have been talking by e-mail since, and he graciously shared some thoughts that can help others. Here are the comments he agreed to let me post:
“My message to people planning to have the mini maze procedure for atrial fib…check out the surgeons.”
“If they are only using one surgeon, make sure he has years of experience doing the mini maze, because it is a complicated procedure. And also make sure he/she has an experienced assistant. If they are using two surgeons, all the better.”
“I took the word of my arrhythmia doctor and only after did I learn that not only was there just one surgeon and no assistant, but the one surgeon did not have that much experience doing the mini maze alone. In the end, that mistake will cost me my life.”
“The procedure is a good one, and sometimes the only option, but be cautious on who does the surgery. Find out (1) if they have lots of experience, and (2) do they use two surgeons or at the very least, one surgeon and one experienced assistant.”
Dr Dave Samuel
But there is wonderful new news – he is considering surgery that may greatly improve the situation.
Dave, you’ll be in our thoughts for a successful surgery.
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Wow! This is exactly how I feel! I am 27 years old I developed A-Fib when I was 21, I was 4 months pregnant with our son. I have been tossed around to so many cardiologist that told me I am to young to have this and they don’t know how to help me! I have been on all the meds none of them work I have been poked and prodded to the point I feel like a glorified guinea pig. My A-fib has gotten to the point where I cannot work due to my A-fib occuring more and more often.
Thus leaving my husband to be the only provider for our family of three, not so good, have you seen the gas prices? We have had to live with family and then try to venture back out on our own and then nope back again with family. Our finances are and have been in the negative for quite sometime, I hate having these problems because I cannot provide a life for my son.
I came across the Electrophysiologist I use back in 2003. Of course it was here try this pill….a month later ok that doesn’t work here lets try this one….alright two months later that doesn’t work here try this one. This went on for years. I kept going in and out of the hospital with my a-fib “episodes” and our bills kept racking up by the tens of thousands of dollars. I honestly didn’t get a chance to be a momma. If I wasn’t in a-fib then yeah I felt like crap from the meds. Finally this past year my Electrophysiologist recomended me to see a cardiothoracic surgeon to have the mini maze procedure performed. Which is where the doctors go into your heart through your sides and create scar tissue between the chambers of your heart so the “miss fired” electrical impulses won’t send your heart in an arriythmia.
Well the last week of July of this year, I agreed and went in to have it done. About two hours into the surgery, the surgery was aborted due to the fact they found a blood clot inside my heart. Now I should be dead. All those doctors who told me that I am too young, you shouldn’t have these problems I don’t know how to help you here take this pill. They all wrote me off and couldn’t care less if I died, but I have a little man who cares if I live or die. This is a horrible problem to have you do not know for one when you are going to go into a-fib so you always have that fear but two your heart might be beating but you are not living.
My blood clot is now gone and I am scheduled again to have my surgery on October the 20th. So please offer up prayers, I want to live I want to be young I want to be a mom!
My email is [email protected] if anyone wants to chat or know more or just want to vent, feel free to email me!
Lauren,
I’m so sorry. I’m sitting here in tears reading your story.
When someone so young has afib, it’s often related to lots of exercise or to a family history of afib. Does either apply? I know a number of young women who have had heart attacks during pregnancy, but not afib. It is unusual.
I’m so sorry that your mini-maze had to be aborted due to a clot, but it’s good that they found the clot in time.
I really feel sorry for doctors, too, because they don’t understand what afib does to their patients, and they feel at a loss to help us find a cure. They are following the protocols, but if they truly understood the impact, you wonder if they would be more aggressive in treating us and in pushing for changes to the protocols. As patients, we have to advocate for changes to solve our afib problem more quickly. Sorry, enough of my soapbox.
You’ll definitely be in my thoughts and prayers on Oct. 20. I’ll send you an e-mail to get more details.
Hopefully soon afib will be only a distant memory.
Warmest wishes,
Mellanie
I found that ONE culprit that would give me afib… MSG. It’s everywhere and it’s so hard to avoid, but MSG is a killer and there’s dozens of names for it. BEWARE!
Richie,
Thanks for the info about MSG being a problem for you. I’ve heard that often.
Mellanie
I have been in perm A/Fib now for approx 2 years after having a failed full Maze Procedure 3 years ago,.
In April last year I had a bout of NSR for 3 days and again in July last year for about the same period but apart from that being in Perm A/fib it is bearable and all I take is 25 mg Atenolol night and morning plus the usual Warfarin (Mechanical Aorta)replaced 3 years ago at the time of the Failed Maze.
Now yesterday 12th Feb 09 3am I went back in to NSR ? and I sometimes wonder if “One Day”?? the maze scars around my heart may work ?
My BP is good 120/80 but pulse is between 44bpm and 54 bpm this morning at 6am .
I have found that it is a waste of time notifing my Cardio / GP ect as they really do not have any answers and I would expect that I will probably go back into A/Fib in about 2 to 3 days , my heart is sound with no other underlying heart problems .
Has anybody else had the phenonemon ? while it’s great to be back in NSR I don’t trust what is going on and I am expecting to go back to A/F anytime.
My valve is fine and that does not give me any problems .
As I am writing this letter at 6.30 am my pulse is still slow 53BPm with the odd missed beat and my BP is 104/72 .Interesting that the last two times this has happened I get a gripey stomach while in NSR ?
I look forward to getting some feedback from members…………..
Regards…Kevin
Hi Mellanie
Here is an interest to ponder, I was in NSR for 36 hours in which time I had a very upset stomach , low pulse, low BP , feeling lousey had a silent Migraine Aura my stomach felt bloated and I felt very agitated,I stopped my Atenolol which was a mild dose anyway and I just took a 1mg Clonazepam to calm myself.
I went back into A/fib at 6.30pm last night and it was a rough ride, very rough A/fib so I took a seditive and went to bed with 2 x 50 mg Atenolol and I have woken up this morning back in Mild permanent A/fib and I feel so much better .
All of the time yesterday my pulse was extremely low (42 to 52) and BP as low as 93/63 so how do you explain that to the Cardio’s ? I have tried to tell them in the past how I feel and they just say things like , Oh just take some Digoxin or Sotolol or Ameoderone ?? whixh are all poisons and why take Digoxin when I have got such a low pulse at the time?? .
They really do not know these EP’s / GP’s / Cardio’s etc.,
I will never ever take any of their poisons .
I was not in permanent prior to the Maze and the surgeon assured me that he had a 90% success rate?”Yeah Right” $42,000 later it failed but he got his money and now he will not reply to my letters or phone calls ! so what does that tell you?
I feel so much better in Permanent A/Fib and I live a realativley normal life with very few drugs …….Your Comments Mellanie ?
Regards………Kevin
I am 52 and have a-fib. I also have Brady Cartia and a pacemaker that “sometimes” helps with my a-fib.
I have been on coumadin for 4 years now and have been on numerous a-fib blockers. On Sat had a bad one my bp was 210/145 with 120 pulse. I stayed in it for 1 1/2 hours. Now they want to put me in the hospital for 3 to 4 days to start me on sotalol.. how long should you wait having those symptoms b4 going to the hospital? i usually will have them for 20 minutes or so then they stop…. how high is too high? Dr. wants you to go everytime some say just live with it.. i also have diabetes, arthritis etc. i take insuline shots 4 times per day and about 13 meds.. But with all my other sicknesses this is the worst one.. My brady cartia is completely undercontrol with my pacemaker. I took a sulfa drug (didnt know i was alergic) and had to have the papemaker… i had steven-johnston syndrome and was lucky to be alive. The a-fib is one that not only makes you go nuts but for days after it I am so tired and weak it is crazy.
any info would be greatly appreiated.
Dear Kevin,
I’ve been on the road so much for Heart Month speeches of late, and just don’t like to drag along my computer for all those flights, so I’m late in replying.
I’m so sorry that you continue to have challenges following your failed surgery. At least you feel good in permanent afib. Is your heart still strong? I hope that one day soon a solution will come for you. You will continue to be in my thoughts and prayers.
Mellanie
Debbie,
I’m sorry for all your challenges.
You need to follow your doctor’s guidance as to when to go to the ER (or get a different doctor). Some doctors say 12 hours, others 24, and still others 48, but some say to go immediately. It’s mainly about clot and stroke risk, and no one can really say that you won’t have a stroke right away. I had a near stroke immediately, but then I was never stable on Coumadin (genetic reasons). If you’re stable on Coumadin, you’re at less risk. Everyone is different – that’s why you need to get guidance from your doctor. No one else’s “rules” are right for you.
Are you working with an electrophysiologist (doctor that specializes in heart rhythms)? If not, that might help. Good luck.
Mellanie
can you be cardioverted with stents
Amy,
I have never heard that you can’t be cardioverted with a stent. It seems reasonable to figure that you can be.
Folks, do you know otherwise? If so, please post.
Mellanie
Melanie: My husband had a bad heart attack 8 yrs ago and was diagnosed with CHF and a very low EF (15%). He was in heavy AFIB at that time and it was terrible. He has been in and out of AFIB ever since. A recent heart attack (Feb 7) and a stroke a few weeks later (March 9). Left him with an EF of 10% and (in the doctor’s words) a very, very weak heart. He told me that my husband has about a year’s worth of heart left.
The stroke left no bad physical effects, but left him with Aphasia, which makes it difficult to communicate.
The doc put him on Amiodarone, then told him to go and have his lungs, eyes, thyroid and liver checked.
Eye doc told him his vision had decreased to 8 times as bad as they were before (was 20/50 with glasses – now 20/400 with glasses), gave him a shot in the eye (said it was bleeding), and put up a $6,000.00 bill. Wants him to come in once a month for these expensive things. We can’t afford it.
Now he has the CHF, Diabetes, Aphasia and AFIB. Cardioversions X2 – neither successful. Third attempt showed a blood clot in the heart. Cardiologist scheduler called and set up a TEE and possible cardioversion for May 4.
Recent (May 1) visit to Cardiologist was puzzling.
He listened to the heart (no EKG this time), pushed on the stomach, asked a couple of questions.
When I mentioned the scheduled TEE, the doctor put his head down, stared at his computer keyboard and said “You don’t have to have this procedure if you don’t want to.” We thought that was good news at first, but, now we’re scratching our heads, asking is this a good thing or a bad thing?
Could it mean that something was worse, or that he was through with any meaningful treatment?
We sit here day after day (I can’t leave him alone for fear of blood clots/strokes), looking out the window – we’re only 66 – we should be out having “old folks” fun.
What are your thoughts????
I am 27, diagnosed with a-fib @ beginning of May after being admitted to the hospital w/ persistant A-FIB. i know i’ve had this since i was a young teen. always short of breath, played sports and worked out just as hard as the other kids but i never felt good. year after year i’d mention something and was told it happens to everyone. fast forward to my second pregnancy in 2006, told OB/GYN about my heart, said it was just the extra blood from the pregnancy. a year later tried to work out, almost passed out heart was pounding so hard. might i mention i was diagnosed with a thyroid disease (autoimmune hashimoto’s). put me on thyroid meds, threw my heart for a loop, still the doctors wouldn’t check it. stopped thyroid meds. up until this year was having a-fib episodes at least once a week. had episode that last 3 days and felt like i would die any minute, finally went to ER. saw doctor after doctor really were just interested in seeing the screen and being amazed that i lived so long with this. was put on flecainide and torprol XL, release with diagnosis of a-fib, valve regurgitation, and be seen in a few months. meds made me sick, changed them 3 times, back on the same stuff. a-fib as soon as i miss a dose. doctors keep saying “this wont kill you, stay on meds, no surgery for you”. i have two kids, a demanding job and want a normal life. feels like a death sentence to me.
Hi,
I’m new here, but it is interesting reading all these comments.
I was hospitalized in July for Afib. To my knowledge this had never happened before. I was going through some very stressful situations. I was caring for my elderly mom ( and still am ). Trying to fight my insurance company for dropping me and a few others that I will not get into here. Suffice to say, I was under a lot of stress, and not getting much exercise. Normally I was quite active.
I was in the hospital for three days. Most of that time, for monitoring my meds. I was put on Flecainide 50mg twice daily, with Dilziatem 120mg, and a full aspirin. I continued to see the hospital assigned cardiologist after my release.
He administered a chemical stress test ( only because he gives no other kind ) which showed some possible blockage. He changed my meds slightly. Giving me Meteropol 25mg in place of the Dilziatem. He kept me on the Flecainide even though there was a possibility of blockage.
It is now three months later. I have had no serious side effects from the meds. My Meteropol was halved, after my heartbeat got very slow. Now it averages around sixty bpm.
I was told to exercise. I walk at least two or three miles a day, and also ride my bike at least three times a week, usually around sixteen miles at a time. I have no shortness of breath or other symptoms. I have not had any recurrence of afib since starting the meds. In other words I feel absolutely fine.
I am not overweight. Was otherwise healthy before as well. I have stopped drinking, and almost all caffeine ( have always been a chocoholic ) so I have an occaisonal piece of chocolate. Reading these posts scares me. Since I have been feeling fine, now I expect that I’m going to drop dead or something. I guess I could sit at home worrying, but I choose not to. What I want, is for someone to find a cure for this damned disease! I am much too active, to be a slave to pills for the rest of my life. I had planned on traveling mostly to third world countries. Now that’s on hold indefinitely! I like to have a glass of wine with my spaghetti! That likewise is out. How do you all live like this?
Hi,
I was told that A=fib can not kill me , that it can give me a stroke and i had no idea it could make my heart stop… i had my first A-fib when i was 28, followed by now panic attacks and my life never the same.. i am 46 and had another attack that ended me in the hospital on dec, 5th 2009, lasting 18 hours .. heart beating at 200 to 220 when i went in the meds got it down some tell it converted.. now back when i first had it they told me it was stress.. and never placed me on nothing nor did they thin my blood for it.. that first one lasted 8 or so hours.. course now they say i am a great canadate to have that oblation thing done.. and i was considering it.. but now reading all this i am scared to death.. i now sence the last attack take meds.. the fib sence on the meds tries to come on everyday now.. where as b4 the meds i didnt get it as much just flops now and then and more so everyday witht he flops.. in this last year.. how please someone tell me how do i deal with this anxity and horrid fear of death this has left me with.. i dont even leave the house now.. there has to be help for me domeplace..
thanks . Renee
Hi – I told my doctors 2 years ago to keep the drugs and went in search of other solutions. First, I did a total cleansing diet…that alone was a big help. I stopped caffiene intake ( most of my friends can’t believe it, but I tell them if you’ve ever had afib, you’d do whtever necessary to stop it)as well as MSG and also went gluten free for a while. Additionally, I take L-theanine ( a sort of anti-caffiene, derived from Green tea) and Magnesium Glycenate, the most absorbable /bio-available form of Magnesium. With these two supplements and a conscious effort to reduce stress, I have been able to control the afib to a large degree. Also in my arsenal: Cocculus indicus – a homeopathic treatment (said usually to be for motion sickness), Tagamet – an over the counter acid reducer and for me, a last resort if I get too enthusiastic over some Spaghetti and Meatballs etc.; Aspirin – not with the Tagamet, but if I need reassurance that I won’t stroke out. All in all, much better than drugs or ablation. Best to all! Jeff
Hi there to everyone who has posted a comment on this site. I am a 31 year old female living in London that has experienced chest pain and heart palpitations since I can remember. I went to see my local GP when I was 21 and this is where this road started and has not ended. I have been under a private cardiologist for 8 years. I have had every test you can think of structurely for the heart and they have all come back normal. I have supra-ventricular ectopic beats, bigenemy and trigenemy.
I am still waiting to get a diagnosis as to whether I am experiencing A-Fib but my life has not been the same since I was admitted into hospital with what the doctors thought was a “panic attack”. I came over all hot in the car and had a sensation as if I was going to pass out. Felt immediately that I was on my way out and so weak that I just didn’t care if I was.
I was rushed to hospital where these “waves” kept coming over me. The doctor looked and me and said that I was having a panic attack. The next thing my HR shot up to 220 BPM and I was taken into resus with a very worried looking doctor telling me that I was in aetrial flutter!
3 weeks later I found out I was pregnant and put it all down to that. Since then I have been experiencing a buzzing sensation in my chest every night and every morning. Even during the night in which I am not getting any sleep. My heart is bouncing all around the place and I feel like I am losing my mind. I am standing my my daughters cot of a night thinking will this be the last time that I will see her.
The worst thing is; my family now all believe that it is panic attacks when I know it is not so I am so isolated with it all.
I know none of us are doctors but does this sound like a-fib to you?
This will make you laugh, when I told my GP what my heart was doing in terms of the buzzing, she said it was my nerves!!!! If only!
Sorry this has been so long. Got so much more to write but would be great to get a reply. Some of your stories have had me in tears. Maybe I don’t have so much to worry about?
Catherine,
I’m sorry. Unfortunately, too many doctors chalk our symptoms up to panic attacks when that is not it at all. That’s especially true for women patients. Are they having you wear a heart monitor to figure out what kind of heart rhythms you’re experiencing? How can they know if they don’t do that?
Several women lately have told me that they were experiencing buzzing or vibrating in their chest. That could be afib, or it could be atrial flutter. Flutter tends to be regular and fast, whereas afib is irregular, kind of like having a fish flopping around in your chest, or bouncing around as you mentioned. Both are very annoying, and both can put you at risk for blood clots, if you’re susceptible. It sounds like you may have afib.
Being pregnant puts a strain on your heart, so I hope they will figure this out quickly for you. Hopefully they will have you wear a heart monitor.
Once you find out what kind of rhythm you have, you may want to see an electrophysiologist. That’s a cardiologist that specializes in heart rhythms.
It’s unusual to have to deal with afib during pregnancy, but we’ve heard of a number of cases. Therefore, we have created a discussion forum for discussing afib and pregnancy, which you’ll find here: http://forum.stopafib.org/index.php?showforum=19 There are no discussions there yet, but feel free to start one. You’ll need to register first to create a discussion.
Good luck.
Mellanie
I have had atial fib since I was 27 years old I am now 38. It has been hell! I am on Inderal LA twice a day 80mg a pop. I really think it has something to do with all the chemicals that are in the foods. MSG is a big one, diet pops, breads, potato chips,and such. I think the body cant handle these foriegn substances. I think also our body builds these toxins up in our systems and goes haywire. I think this is wear cancer comes from also. I dont think this starts from the heart at all I think its a gastro problem. I also notice when I have alot of acid in my stomach or I am sick to my stomach artrial fib and palpations come on easier Vagal Nerve irritation maybe. I dunno but I know this is strange but when I feel them coming on I drink Pepto Bismal and sometimes baking soda and it has prevented it from happening. I have had it once in three years and that was becasue I was hungover bad! If I wasnt out drinking heavily that night I could have probably continued my streak of good fortune!
How do you know the difference between Rapid heart beat associated with anxiety attacks and a fib?
Hi I am 31 weeks pregnant and this week have felt really unwell I had called my docter to book an emergency appointment as my breathing was getting worse and my heart beat was high and erregular when resting I also felt I was going to pass out .After seeing my docter he told me I had an erregular heart beat it would beat miss beats and then race. He said this was common in pregnancy and if I was not pregnant he would research this further with beta blockers etc when I tryed to explain how thease affected me he told me to think positive every time I get them and that Im not gonna die which I think is a rather strange comment to be made and that was it he took my blood pressure then said he would return to do another blood pressure check and never did . any comments would be welcomed
LISTEN!!!!! I HAVE HAD AFIB ON AND OFF FOR 25 YEARS, I FOUND THE CAUSE!!! MSG’S IN OUR FOOD!!!!!! PLEASE TRY AN MSG FREE DIET .
I have been in and out of a fib for thirteen years.I have been converted about twice a year the last few years. my DOC is is getting rude with me and is sending me to some other docters to try and help me.He (my doc)got upset with me because I couldn”t take some new medicen that I got sick and told me it was in my head. I;m getting so disgusted and scared I just dont know what to do anymore.i truly wish they could find a permant solution for me and everyone suffering with this horrible healh problem.
Hello IM BAck again..cardioversion lasted 18 mths..few small blips, but its now back with horns.
Back to square 1 once again. Heart rate 196 bpm blood pressure 90/40 up my beta blocker feel sick, faint/dizzy but still have to work live on my own,
Can’t claim anything told i can walk 100yds !! this bloody condition stinks so do Drs clueless!! awaiting consultant appt could take mths.
What do we do to make a difference, we need to get on TV to talk about this condition.
So Ablation failed, 9 cardioversions, drugs never work for me..whats left Mellanie ?? Christine
Hi, back again here with more questions my doctor will not answer. What is it with these doctors!
I am still taking the same medications I started in july 2009. I went to one other heart center that Mellanie mentioned in Tampa. They said my doctor had me on the right meds ( flecainide 50mg x 2, metoprolol 12.5mg, and 325mg Aspirin plus Simvastatin 20mg ) and that I should just keep it that way as long as I can. Since I do not have insurance they ruled out an ablation. They said ” procedures are getting better every day, and the longer you wait, they can only get better” that was their way of saying. Well, since you can’t afford to pay us, oh well!
I worry that the flecainide will kill me, since blockage was never ruled out. I never had a catheterization for the same reason I haven’t had an ablation. No insurance. I do agree, things can only get better with time. I just hope my heart holds out. I still do not know what the danger is with CAD and Flecainide. I can’t find any information about it, and my doc obviously if he knows, won’t tell me.
Ken,
Here are a couple of resources that may help:
1) Here’s what it says in the 2006 AHA/ACC/ESC Guidelines for Managing Atrial Fibrillation (http://content.onlinejacc.org/cgi/content/full/38/4/1266):
“Flecainide administered orally or intravenously was effective for pharmacological cardioversion of recent-onset AF in placebo-controlled trials. It has not been evaluated extensively in patients with persistent AF, but available information suggests lower efficacy in this setting. Limited data suggest that flecainide may be more effective for conversion of AF than of atrial flutter. A response usually occurs within 3 h after oral administration and 1 h after intravenous administration. Arrhythmias, including atrial flutter with rapid ventricular rates and bradycardia after conversion, are relatively frequent adverse effects. Transient hypotension and mild neurological side effects may also occur. Overall, adverse reactions have been reported slightly more frequently with flecainide than with propafenone, and these drugs should be given cautiously or avoided entirely in patients with underlying organic heart disease involving abnormal ventricular function (206–208,210,220,229–233).”
2) Here is another article that may help:
http://clinicalevidence.bmj.com/ceweb/conditions/cvd/0210/0210_I5.jsp
Mellanie
After leaving a stressful and burnout job in 1999, I retired and moved to Maine. In 2000, I went to a free clinic for a BP check up and found I had AFib. Over the next 6 or 7 years, the occasional episode of AFib turned into full time AFib. I hated having it, and I hated taking cumadin. My cardiologist said I should just live with it, and it wouldn’t kill me. I could not believe that, because a heart that isn’t working as it is supposed to, is working too hard.
My sister sent me a newsletter from a clinic near her about a doctor who was doing ablation procedures with good results on AFib. I was very excited because that was the first I’d heard that there was any hope for getting rid of AFib. I looked on the Internet and saw some articles about one doctor in Brooklyn, N.Y. who specialized in, and did research on AFib. After reading many articles by, and about him and his surgery, I emailed him and asked if I could be a subject of his research and have the surgery. We communicated by email for some time, then I had the surgery in March of 2008. It was a kind of microwave ablation done by inserting the wands and a camera between the ribs and ablating the outside of the heart on both sides. It was several months before my heart stayed in normal rhythm and it has remained there to this day. I am so happy that I did this, against my cardiologist’s wishes by the way. The recovery to normal health took months to acheive, but I would do it again in a NY minute, knowing what I know now. The feeling of well being, and the fact of no more cumadin are well worth it.
By the way, about 6 months after the procedure, I went for a follow up visit to my cardiologist saying that I thought I should stop taking cumadin because my heart was in normal rhythm, and I don’t need it anymore. He was very skeptical and said he was going to do an EKG right then and there. When it was done and he got the results, he was amazed, and said, in a tone of wonder, “Your EKG is normal!”. So I have been in normal rhythm, and off cumadin for the last two years.
I do not understand why the cardiologist was so uncooperative with the idea of my having this procedure done, although I understand there is a kind of rivalry between the cardiologists and the surgeons. My surgeon is a Harvard grad, very skilled, and passionate about his research on AFib. He also is not arrogant and did not take Arrogance 101 in medical school. I am so happy I found him, and would recommend him highly to people who want more information about this procedure. If anyone wants information about this doctor, I can be emailed at [email protected]. Good luck.
Stephanie,
Congratulations on your great results, and for being afib free. You’re an inspiration to all who want to get rid of their afib.
Mellanie
Hi Christine here
Still a sufferer of AF 9 cardioversions, Drugs, Ablation( failed) more drugs, more problems with stomach( bloating, more drugs.
The only drugs i take now will always be warfarin don’t want a stroke,
Drs tell me i’ll never come off the rat poison!!. Back in AF on a beta blocker which seems to be the only drug that i can tolerate. This week just went back to SR so cancelled DC and consultant appt leave it open for the poor AF suffers that have no idea about this horrible condition. Keep smiling Christine
Christine,
I’m so sorry about what you’re still going through. Have they considered the replacement for warfarin, called dabigatran, as an option for you? It’s more expensive, but easier to use.
Mellanie
Not sure if this info will help anyone, but just as a possible what if cause….
In the past 3 months I got in the habit of wearing my Google Android in my left breast shirt pocket.
Within one to two weeks of starting this practice, I started with A-Fib episodes (never had before).
In approx. 45 days I experienced 6 (six) episodes.
I started wearing my phone away from the heart, I wear it on the opposite hip side ( on my belt ).
Thank God Its been 3 weeks with no episodes.
I asked my cardiologist if it could be possible, and he said yes it possibly could. The heart reacts to electrical impulses.
Keep these new powerful cell phones away from the heart !!
I will keep you posted with any further progress….
Ed,
Thanks for sharing your experience.
Mellanie
hello back in AF again so back down for cardioversion again, god its evil..attacks you when you least expect it xChristine
hello back in AF again so back down for cardioversion again, god its evil..attacks you when you least expect it xChristine
Christine,
I’m so sorry. Good luck.
Mellanie
I know what you mean. Had palpitations for years then started getting these attacks 5 years ago off and on different than the normal benign palpitations. Went through 4 cardiologists all gave me 24 hour monitor I asked for the 30 day one but they all thought i did not need it . always told nothing wrong its just stress lay off the caffeine problem was i was never stressed. all insisted it was only mild benign palps and i am healthy no one took me serious because they could not catch the episodes every time i wore the stupid 24 hour monitor i was not having one. went to hospital a few times they would keep me till it passed and refer me to another cardiologist. to make matters worse when the cardiologist tried to get my hospital records he could never get his hands on them. So again they had nothing to go on finally the cardiologist i have had for a year was out of office when I had my next attack they told me to come in and get checked by the time I got there it passed and I was only having the benign palps again but the nurse practitioner decided to order me the 2 week monitor 1 week later while wearing it at 3 in the morning I had an attack lasted 45 minits I hit the record button and 3 days later I get a phone call from my cardiologist wanting to see me right away turns out they saw abnormal heart rhythm atrial fibulation finally 5 years later they found the arrhythmia I am mad I had to fight for the 30 day monitor afib is nothing to play around with and needs early treatment to avoid it becoming permanent and causing stroke I am only 48 years old Know they want me to have a stress test and echo I am on a beta blocker and baby asprine. People you have to be your own health advocate stay on top of the doctors dont let them tell you it is in your head. My doctor is suddenly bending over backwards since The monitor caught it .This is something I get 2 times a month sometimes a few months go by and I am find then other times It can happen 2 a week longest episode I had lasted 8 hours that was when I went to hospital over a year ago.only finally diagnosed 3 days ago I will let you know how everything goes. Does anyone know the best treatment for afib?
Amy,
I’m sorry you’ve had such challenges.
Unfortunately, there is no “best treatment for afib”. We’re all different, and respond differently to medications and procedures. The best thing to do is to find a specialist, an electrophysiologist (that’s a cardiologist that specializes in heart rhythms), and start working on possible treatments. Some people prefer medications, which is the normal first step, but if that doesn’t work, procedures are an option as well. Some people prefer to move quickly to procedures if medications fail.
Good luck.
Mellanie
I know what you mean, I am sitting here having palpitations pretty strong for the last 3 days. I had a 24 hour monitor last week, I had no palpitations worth worrying about a few days before I was pretty bad had them so bad my nurse that was doing my infusion had a Dr. check me out and I flunked the ekg he did.i was so dizzy and had brain fog so bad and confusion, glad I had a ride in. felt really good , best in a long time for about 5 days now I am on the sofa worried about how bad I feel, I don’t feel like talking to my Dr. cause I feel like it is a waste of time, they will make me go in the hospital and say you are fine.I am 72 never had any cardio related surgery.my np said I can’t have the ablation, and I was so confused while I was there , I don’t know what she gave as a reason.
Amy before you find out the best treatment the doctors need to find the cause of your afib.
ABLATION IS NOT FOR EVERYONE. THERE IS A CUT OFF AGE OF 70 AND YOU MUST HAVE A PRISTINE HEART, NO STINTS ETC . HOW DISAPPOINYED I WAS.
Margaret,
That’s unusual as many doctors will do catheter ablation up to age 75 or 80. And I know folks with stents who have had ablations. Maybe it was where your stents are located.
Have you considered surgery (surgical ablation) instead? Generally age 80 is the cut-off, though some surgeons evaluate on a case-by-case basis and have done surgery on those a few years past 80 if they were very healthy. And stents are not generally an issue either. Even pacemakers aren’t an issue.
Mellanie
Contrary to Melanie’s opinion to Amy, above (which frankly surprises me, since she was cured by the same procedure that cured me 7-years ago) there IS a “best treatment” for lone Afib (the kind that affacts 85% of Afib sufferers)! It is called the Wolf Mini-maze, which not only eliminates Afib for an average of 90% of sufferers in one minimally-invasive surgical procedure, but it removes the source of heart induced stroke potential (the left atrial appendage) thus eliminating the need for Coumadin regardless of whether you have any further Afib episodes, and also eliminates need for anti-arrhytmic and heart rate prescriptions! I had Afib for 13 years and encountered three ER-required Congestive Heart Failure and ultimately resulted in an ejection fraction of as low as 15% before the mini-maze and can and do testify about the life-changing results that have kept me Afib free for 7 years. I successfully survived 9 clueless cardiologists/electro-physiologists that erroneously stated that Afib WAS NOT life-threatening, or were in denial that I had anything to be concerned about.
My impression of cardiologists is that most are more concerned about having life-long patients (profit sources) rather than curing the ailment once and for all.
A simple test for their competence is to ask them for a referral or ask them about what they think about the mini-maze cure. If they start bad mouthing it, then tell them like I did, that you are going elsewhere to get honest answers, because you don’t need their referral anyway!
–Chuck
Chuck,
While mini maze was the right choice for you, and it was the right choice for me, it may not be the right choice for Amy. It is not the right choice for everyone, which is especially true for those with persistent and longstanding persistent afib.
I am not a medical professional, so I cannot evaluate Amy’s medical history and whether mini maze is the best treatment for her. Lone afib is only about 15% of afibbers (NOT 85%–that 85% is those with underlying heart disease).
Lone afib is more common in men than women. Women are at much greater risk of stroke, often due to underlying heart disease that is not easily diagnosed in women (stress tests find 2/3 of heart disease in men, but only 1/3 of heart disease in women). So it’s not appropriate for us to tell her what is the best FOR HER since we do not know her co-morbidities. I cannot agree that mini maze is definitely the “best treatment for her”. We do not know that, and my personal experience is that mini maze success rates seem to be higher in men than women. Most of the failures I’ve seen have been in women.
Also, today many mini maze surgeons will not do the procedure on those with paroxysmal afib unless they are referred by an EP for the procedure as they believe that trying an ablation first is the correct approach. Thus, they only do those with persistent afib or with enlarged left atria or other conditions that make catheter ablation less appealing.
I understand your zeal for the procedure that cured you, and I have a lot of zeal for it, too. But I also know that it is not the right answer for everyone. I am not a medical professional, and thus while I can provide facts, I cannot offer medical advice.
Mellanie
Dear Mellanie: You are doing a terrific job and maybe this is what Godcalled you do, a real lifesaver. I wrote a long time ago. I had heart murmur as teen and probably is congenital. At age l7 I found heart murmur, told to slow down.At age 60 had titanium aortic valve put in and mitral tied up better. Now at 83 I am considered congestive heart failure. Enlarged atrium which they said would make an ablation worthless. Gave me a pacemaker with defib. and stent in one of heart arteries. Took me off amiodarone and left me on coumodin which I weekly test at home. Some talk aboutfuture stem cells in the future if I am hear. I have no rapid heart beats and low blood pressure. Take several heart medicines, see cardiol. monthly. Had low platelet problem which now seems to have improved with prednisone. But my heart dr. gives me the attitude, we have done all we can. Just exercise, diet, take pills, and “wait it out”. I keep searching for more answers and read about the research going on. But I keep asking, am I missing something? I am up every day, walk fine on level, and have mild apnea (Oxy. at nite).
I know my age is against me. As my ef falls maybe I can get an extra pump if I could survive surgery. I read about all the studies in the world as AFib is increasing in all the world. But USA is last to allow anythhing new.
Thank God you are so good in what you find. Can you suggest any other avenues for me.with mky long time afib.??? I read about the OHIO Univ. hosp with the dr. who does 5 box. Which sources seem to be on the cutting edge that I an tune in to. I keep a positive hope that I might make it to 90 years .
You need not publish this long comment or use it as you will. I know your work is helping so many and I pray God will give you strength to live long.. I can understand now drs. are do busy with l5 min. appointments that I dont know that they just want to go with the status quo. I get several heart hosps. publications but you seem to be on the cutting edge.. …—austin coe
Austin,
Thanks for the kind words, especially comparing our information with that from heart hospitals.
Stem cells are a bit down the road, and unlikely to help us for a while.
Enlarged atria are more of a problem for ablations than for surgery. And a pacemaker generally isn’t an issue for surgery either. Surgery has been known to reverse congestive heart failure, increasing ejection fractions to near or above normal, so a pump would be unneeded. The only issue I see is that some surgeons won’t do surgery over 80, but some will, on a case by case basis, depending on the health of the patient. It’s worth checking into.
My sense is that the 5-box surgery is not the right choice since you had valve surgery earlier. You’d probably need the open-heart version of afib surgery because you probably have scar tissue from the earlier surgery. So you’d want to find a surgeon who specializes in open-heart afib surgery (maze III or maze IV) and have a discussion about your overall health to see if it is possible.
Good luck.
Mellanie
I am glad I found this blog, now maybe I can learn more about my afib and what to expect or not expect.
I had no clue I had afib, none whatsoever, it reared it’s ugly head when I was 1200 miles from home working although I did not know at the time what it was, I just knew something wasn’t right as the only thing that was affected was my breathing and overall strength.It was 6 days later when I got home I decided to go to the emergency room, my wait was only about 15 minutes and when they took me in the back (just a short walk) my heart rate had climbed to 160. I spent 4 hours in the ER before being moved to ICU where is stayed for 2 and a half days before being moved to a regular room.During my stay at the hospital I was diagnosed with hyperthyroidism which may very well be the reason for my afib, although they will not do a cath until that is taken care of. They are worried that the iodine used in the cath will set things off and I could possibly end up in cardiac arrest. It wasn’t until my 5th day in the hospital that they were able to bring my heart rate down below 100.I can honestly say I am now getting used to the lovenox shots, which I administer at home for now, I am taking coumadin, methimazole, lisinopril, carvedilol, digoxin, and my least favorite lasix.I went in the hospital on may 11 2012 and came out on the 18th, it took me almost 6 days to finally get the doctor to slow down and really explain to me what was going on. I guess my getting frustrated and expressing the frustrations to my nurses finally made him realize I was not a mushroom, he then sat down ad we had a talk but some questions still went unanswered.
So I mentioned before that I was 1200 miles from home when the episode hit, I am a truck driver, not for the time being though as the cardiologist said no driving for me, not even my personal vehicle. Being a truck driver I was already at risk for other health issues (blood clots in the legs) but never really thought something like this would happen and I would be sitting at home saying what am I going to do now.I know the thyroid issue must be taken care of in order for them to do a cath to check for small clots not seen or found on the ct scan or echo but other than driving how do you think afib and thyroidism might be keeping me out of work? I have missed no work in over 10 years and I am already about go to stir crazy from being home and it’s only been 4 days not counting my hospital stay.
Just one more note about work, the cardiologist doesn’t seem to have an answer when I ask him about returning to work even if it means a change of jobs…which I really hate to do but, would if I really need to.
Your thoughts?
James K.
I am glad I found this blog, now maybe I can learn more about my afib and what to expect or not expect.
I had no clue I had afib, none whatsoever, it reared it’s ugly head when I was 1200 miles from home working although I did not know at the time what it was, I just knew something wasn’t right as the only thing that was affected was my breathing and overall strength.It was 6 days later when I got home I decided to go to the emergency room, my wait was only about 15 minutes and when they took me in the back (just a short walk) my heart rate had climbed to 160. I spent 4 hours in the ER before being moved to ICU where is stayed for 2 and a half days before being moved to a regular room.During my stay at the hospital I was diagnosed with hyperthyroidism which may very well be the reason for my afib, although they will not do a cath until that is taken care of. They are worried that the iodine used in the cath will set things off and I could possibly end up in cardiac arrest. It wasn’t until my 5th day in the hospital that they were able to bring my heart rate down below 100.I can honestly say I am now getting used to the lovenox shots, which I administer at home for now, I am taking coumadin, methimazole, lisinopril, carvedilol, digoxin, and my least favorite lasix.I went in the hospital on may 11 2012 and came out on the 18th, it took me almost 6 days to finally get the doctor to slow down and really explain to me what was going on. I guess my getting frustrated and expressing the frustrations to my nurses finally made him realize I was not a mushroom, he then sat down ad we had a talk but some questions still went unanswered.
My hearts ejection fraction is currently 30% but the cardiologist said he thinks this will get better once things get under control.
So I mentioned before that I was 1200 miles from home when the episode hit, I am a truck driver, not for the time being though as the cardiologist said no driving for me, not even my personal vehicle. Being a truck driver I was already at risk for other health issues (blood clots in the legs) but never really thought something like this would happen and I would be sitting at home saying what am I going to do now.I know the thyroid issue must be taken care of in order for them to do a cath to check for small clots not seen or found on the ct scan or echo but other than driving how do you think afib and thyroidism might be keeping me out of work? I have missed no work in over 10 years and I am already about go to stir crazy from being home and it’s only been 4 days not counting my hospital stay.
Just one more note about work, the cardiologist doesn’t seem to have an answer when I ask him about returning to work even if it means a change of jobs…which I really hate to do but, would if I really need to.
Your thoughts?
James K.
James,
I’m so sorry about what you’ve been through.
I would think that they could get your afib sufficiently under control so that you can go back to work. Whether it’s safe for you (and others) for you to drive a truck is not something that I can address as I am not a clinician. But I would think you should be able to go back to some kind of work.
Hyperthyroidism definitely causes afib, and if they can treat that, I wonder if the afib might subside somewhat. And your having such a low ejection fraction (30) makes me wonder if you might have had afib for a while. Are you in afib all the time, or does it come and go? If you’re in it all the time, if they can get you converted out of it, then I wonder if your ejection fraction might rise.
I wish you the best, and that the afib subsides as soon as they get your thyroid issues under control.
Mellanie
@mellanie Hi Melanie,
Thanks for the reply to my post,
As for being in afib all the time it seems I am in afib more often than not but to try and figure the actual amount of time I am in afib I couldn’t even guess.At my doctors appointment on the 21st he acknowledged I was still i afib done another ekg and of course more blood work. They are trying to get my blood INR to 2.0 for the coumadin (no lovenox shots lately) and after that days blood work I was told my INR was too high and to not take the coumadin for a couple of days.That didn’t do much good, had blood work done again yesterday the 25th and the results were my INR was too low and was told to start taking the coumadin again, so far no more mention of the lovenox shots, lol.So on the 29th is a visit to the cardiologist and I am hoping the news will be good, yes, I am hopeful, lol. I also have to have more blood work done on the 29th and I am hoping my INR will be what it should be or pretty near 2.0I have noticed here lately (and I blame the medicine) that with normal activity I seem to tire fairly quickly, the other day I decided to clean my 450 gallon koi pond, scrape algae off the sides and vacuum the bottom as well as drain some of the water and refill it but, by the time I was done it was as if I had just finished running a marathon. I was tired, I was weak and I felt awful. My family even said I didn’t look too good and were upset because they thought I had overdone it on physical activity. I am having a hard time just trying to take it easy, like I said in my earlier post I am not used to not working and just need to be doing something all the time but, anything is better than another 6 days in the hospital.As for the thyroidism, they don’t seem to be too concerned with that at this time, it seems my blood INR level is more important but I will have a talk with the cardiologist on Tuesday about it even though I know what he is going to say before I talk to him.That’s not his field and I need to see an endocrinologist, which I know but what I am trying to find out is when is the time to see one, at what point in the treatment do the doctors say now is the time to concentrate on the thyroid.
Anyway I will stop rambling now, thanks again for the reply, have a great weekend and here’s hoping for good new on Tuesday.James K
James,
Afib makes you tire easily, as do a couple of your medications, so it’s hard to say how much impact each of those things has. You may want to scale back for a while.
I would think that you should be seeing a doctor for the thyroid sooner rather than later.
Their focus on the INR is to help you avoid a stroke. But I’d want to know what they are going to do to stop the afib, sooner rather than later.
Good luck with the cardiologist. You might ask if you should be seeing an electrophysiologist, which is a cardiologist that specializes in heart rhythms.
Good luck to you.
Mellanie
I can’t afford a dr. and was in the hospital last week for afib. I have had irregular heartrate for years but the last time they diagnosed it was the 80’s. I was told it was mitral valve, now I’m told its not. I’m terrified and on ativan cause i’ve been in a panic attack since i left the hospital mainly because I don’t have any way to get treatment. I don’t want to live with this hanging over my head like this. I feel awful.
My husband was diagnosed about 2 years ago and the episodes are getting worse. As if him having this at 33 isn’t bad enough, we have no insurance, no savings left, and his job is threatening to terminate him unless he turns in FMLA paperwork. His cardiologist’s office won’t fill out the paperwork unless he comes in for a $120 out of pocket appointment that we just can’t afford because he has been out of work since his last episode. I feel like no one cares, no one wants to help him get better because we don’t have insurance…
I wish I knew what to do…
OMG i feel your pain in went into AFIB 10 years ago but it converted after 4 hours well 10 years later it happened again just last week took 4 days to convert back i am a nervous wreck every day cant sleep thinking i am going to die in my sleep this is terrible! and like you i was told i had mitral valve prolapse so i was taking antibiotics for teeth cleanings for years was just told i dont have it at all!! I take xanax because i worry everyday i dont want to live this way it has taken over my life!!! they have got to come up with something to cure AFib. my brother who was only 46 has it and had the ablation but he is one of those people that never worries about things. yeah right! it has got to make him just as scared as i am!!
I discovered that my episodes of A-Fib were caused by dehydration. A doctor prescribed “water pills” when I was first diagnosed 3 years ago. He was wrong, very wrong. I am going with plant-based diet, exercise, proper hydration at all times, and small dose of aspirin. No more doctors for me.
Addendum: I know we are a society that worships doctors and medication. But I believe my condition was caused by lifestyle; alcohol, coffee, bad sleep, and worry. I now consume no alcohol, eat vegan, exercise, and I haven’t been to a doctor in years, don’t need them.
We’re you in a fib all the time or randomly
May God Bless each and everyone that has A-Fib.Ihave had it for years,I am 75.I first noticedit after I took Darvon for pain fron the shingles.I took toprol for A-fib which in turn gave me hypothroidism.Now I am on Synthroid.So now on I check the side effects of any medicines.I just went to a Dr,yesterday and he wants to put a loop over my left breast tocheck my A-fib and I am suppose to wear it for a year or two.I don’t know what good that will do because a Dr.has already determined I have A-Fib years ago when I wore a heart monitor for a month.Today I am anervous wreck because I think the DrS.are just guessing
how to treat us,I don’t think any of them know what to.do.May God help us all.Judy
Hey: I’m a 53 year old Canadian who has lived an exemplary and clean lifestyle. I have been a mountain climber for years and a granola bar my whole life. The atrial fib I experience is genetic with 4 out of 8 of us having symptoms and the others are still pretty young.
The medical model doctors here are just as clueless.
I have had a lifetime of Atrial Fib, but as time progressed and my stress levels grew so did my episodes until they just did not stop, 8 years ago they performed an AV vein ablation, since then I have had 5 more scheduled ablations and they have gone through with 4, with 2 of them being badly botched. I now have a pacemaker, and a lot of scar tissue.
I have been on at least 9 beta and calcium channel blockers which resulted in more than a half dozen trips to the emergency room and I have had a multitude of doctors prescribe all kinds of deadly medications, many which I discovered before taking KILL a large percentage of A symptomatic patients, and I am A symptomatic. I have very low blood pressure and have remained in pretty good physical condition because I make a point of walking everyday, even if it is really slowly.
Since being diagnosed, life has been tough. Being a single mom with no back up emotionally, financially or physically has been very difficult, Transport Canada has taken away my motorcycle license and my commercial drivers license, which I have to qualify and pay big bucks to get back. I am back on my feet because I never say die and my internet business is doing extremely well.
BUT the best news I could share with you is this—-
Now I am under the care of a Naturopath and I wish I did that years ago. OMG I feel better than I have in years. She has got me on Hawthorn root for he irregular heart beat, so my episodes have dramatically declined, Mistletoe for the scar tissue, and a number of other anti-arithmics’ natural remedies, I am no longer on Digoxin which was the only thing I could take to slow my heart rate, but I do understand that I need to be on the Warfarin until I no longer have any arrhythmias. Omega threes are great for prevention, organic, wild salmon oil is apparently the best.
I also take, blue green algae and wheat grass for support.
What I have learned: Sulphites and MSG are a real no no. Alcohol, especially red wine is a trigger as is caffeine. I do have a cup of coffee every once in a while but it is decaffeinated and organic and not every day. Anything to do with preservatives is not good. Keeping Hydrated is of optimum importance. This is funny because all the physicians I have seen wanted to put my on water pills.
Taurine, Magnesium, Calcium and Potassium are an absolute must, as well as making sure your iron levels are good for women. To get more guidelines check out the German websites, they have had huge success with controlling Atrial Fib.
My advise it to find out what you are sensitive to, even if that just means eliminating everything on your eating list, get back to basics, just juice carrots for a couple of days then slowly add foods to your list. And stay away from all processed food. You will be absolutely amazed at what they put sulphites in. I made soup the other day and there were sulphites in the bullion cubes. Guess how I found out about that.
And see a natural doctor if you can, they treat your whole body and spirit at the same time. My anxiety levels have dropped dramatically and I sleep really well. Our next adventure is to treat the menopause as hormones also affect your heart.
Catherine, would you mind sharing the other natural anti-arithmics you are on? And the name and phone number of your naturopath, if possible, maybe she will do a phone consult with me. Thanks for sharing your more natural approach, the drugs aren’t working very well for me anymore. All the Best, Curt
Hi Curt,
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 your experience with others. You might be able to connect with someone who has gone through something similar.
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.
We wish you sinus rhythm and continuous health!
I hate my AFIB. Dr says I will have it till I die, or maybe AFIB will kill me. I have gotten to the point of just saying “OK, DOC”.
Hi Kay Ann,
Thank you for sharing your story and your thoughts and concerns on your afib and your doctor. 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!
Too many of these cardiologist are too arrogant. They just toss out prescription cocktails without informing us about what they’re prescribing, why they’re prescribing it or asking if we are willing to go thru the severe potential side effects. Too many of them don’t keep current on new and better treatments and medications.Every doctor ,especially one that is expected to be a specialist should be retested for their medical license every 10 yrs to ensure that they maintain current on medical advancements and changes.
And I feel that those doctors that prescribe the last resort medications, like Amiodarone, as the 1st med they perscribe or the dangerous drug digoxin, without closely monitoring the levels are either hoping to increase the level of care their patients need (specially those with good insurance) cause it’s all about the almighty $. Or they simply are too outdated to remain doctors.
Hi Annie,
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’ve had a-fib for a number of years and I’ve been able to identify a few definite triggers–dehydration, over eating, foods that cause a lot of gas, any alcohol in excess, and even a small amount of wine. Wine seems to be the worst offender. I can drink a couple of beers or a mixed drink and be fine but even a half glass of wine can make my heart start to beat faster and erratically. I’ve seen several posts, on this site and others, that talk about sulfites in wine being a primary trigger. I think this is what’s occurring in my case. I may try to find sulfite free wine and see what that does. I don’t think it’s just the alcohol since a beer, a glass of wine, and a mixed drink contain about the same amount of alcohol, so it has to be something in the wine.
Hi Bert,
Thanks for letting us know your experience with triggers, and your suggestion on sulfite-free wine. I think other patients may find your insight helpful as well! Please feel free to share your experience and success with others at our forum, located at http://forum.stopafib.org/index.php. Thanks so much again for your comment.
Hi, just discovered your blog. Am so thankful for your resources and the others who are here. Dare I say it–I think I’m improving and I’m not sure why. I am 63 and have had many a-fib episodes over the past 2 years. Very uncomfortable, very scary. Three months ago I was told by a doctor I must taper off of Klonipin because it is very bad. I had been taking .5 mg every night for more than 20 years. I cut back to .25 mg right away. No picnic, that. And withdrawing caused me such horrible anxiety at times. So…one thing led to another in my search to calm down. GABA was effective, but seemed to provoke my a-fib somewhat. For whatever reason, I decided to switch from Magnesium Glycinate to a mixed magnesium (Glycinate, Taurate, and Malate). I DO NOT KNOW if this is helping me, but since I did this I have been doing better. Just thought I should pass this on.
Hi Robin,
We are so glad that you have found this blog helpful! Great news that you are improving as well. Please see my post below to Jim where I suggest visiting our forum, located at http://forum.stopafib.org/index.php.
There you can connect with other people and get some advice and tips that might help you, as well as share what has worked for you in the past. It’s a great community to meet other patients and share stories and experiences. I hope that you find it helpful! Wishing you sinus rhythm.
There are a couple of studies on PubMed that indicate that klonopin (Clonazepam) will stop afib. I have tried this treatment twice and it worked very well. Better than cardioversion.
Thanks for this blog. Why is it that men get ablation and women get drugs?
Hi B,
You are very welcome for the blog. We hope that it has been helpful to you! As for your question, I do not think that just men get ablations and women get drugs. There are a variety of factors for every patient’s and doctor’s decisions. There is more insight into that in this news story, Women with Atrial Fibrillation Less Likely To Get Catheter Ablation Than Men — And Have More Complications: https://www.stopafib.org/newsitem.cfm/NEWSID/248/
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.
Best of luck to you! We wish you sinus rhythm.
Last year I had 4 hospital visits for severe chest pair and my resting heart rate shooting up between100-120bpm. My resting HR has always been 55-65. And I have what feels like a panic attack that last sometimes for days. And exercise/excitement makes it much worse. It can take days to get my hr down to 85-90 and it feels like my pulse is week. And when the panic feeling does subside a bit ( it never goes away completely) I am exhausted for days after. Every hospital visit was chest x-Ray, brief ekg while resting, and blood work. And everytime they told me I had bad anxiety and panic disorder. And I needed to see my primary care doctor (which I didn’t have at the time) so after waiting 3 months I got a new primary care doctor. He looked over all my hospital results and Sid I had anxiety and sevre panic disorder and prescribed Clonazepam. While I agree I have anxiety I I believe it is a symptom of afib, sleep apnea, or both… So I took the clonazepam 1mg 2 times a day. And it helped me not worry about the problem. It didn’t help the problem. My he was still spiking while resting I was still exhausted all the time both physical and mental. I see a new doctor on may 24. I am going to beg him for a stress test and hopefully a sleep study as well. Imagine if I tested positive for 1 or even both. Then I could stop the bento’s and treat the real problem. But I keep hearing the same thing over and over. “ you are a 33 y/o healthy weight male with healthy blood work”. So they never test me or deter me to a cardiologist. You would think me not wanting to take the bentos would prove to them I’m serious but who know. Hopefully in 5 days I will have some test scheduled or be referred to a cardiologist. I have also been told I have depression which I don’t disagree but again I think it is a symptom of not being able to exercise anymore or work due to the unpredictability of my heart. This has been going on since January 2021 and is just getting worse. And I start to have some horrible thoughts go through my head for the first time in my life. I strongly believe I could never act on them but I hate even having them. I apologize for the rambling and jumping around in the story. I am just so frustrated and it felt good to tell someone/anyone how I feel. Because I don’t mention it to my family, I don’t want them to worry.
Thank you, to anyone for taking the time from their day to read this.
-JMATT
JMatthew,
Thank you for sharing your afib story and your symptoms. I am so sorry you are having such a difficult time. 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.
For more information on afib and afib management, we have many resources available to you.
• News Stories on afib https://www.stopafib.org/afib-news-events/
• Patient Resources at MyAfibExperience.org
• StopAfib.org Library: https://www.stopafib.org/afib-resources/videos/
• Please consider attending our 2023 patient conference! Learn more at GetInRhythm.com.
Best of luck to you! We wish you sinus rhythm.