Atrial Fibrillation and Clueless Doctors

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

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

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.

Amy before you find out the best treatment the doctors need to find the cause of your afib.

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?

Christine,

I'm so sorry. Good luck.

Mellanie

hello back in AF again so back down for cardioversion again, god its evil..attacks you when you least expect it xChristine

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....

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

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 deariedot@yahoo.com. Good luck.

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.

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

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.

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 .

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

How do you know the difference between Rapid heart beat associated with anxiety attacks and a fib?

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!

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

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?

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,
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'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?

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.

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????

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

can you be cardioverted with stents

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

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

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.

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 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

Richie,

Thanks for the info about MSG being a problem for you. I've heard that often.

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!

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

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 Andyjacsmom@gmail.com if anyone wants to chat or know more or just want to vent, feel free to email me!

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.

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

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

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

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

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.

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