What's next for my Afib?

[Doree]

What else can I do?  My history....Nov. 1998 Afib thought to be brought on by the Atkins diet which made my potassium plummet.  After medication I converted after about 5 hours and went home with no further treatment.  Two weeks later my mother suddenly passed away and that's when the extreme stress started.  11 months later I had my first anxiety attack and then again 2 months after that.  Jan. 2000 a 2nd Afib.  Went on Digoxin.  Another Afib June 2000 and they added Cardizem.  Another Afib Sept. 2000 and they took me off the Digoxin and Cardizem and put me on Atenelol 50mg. (During Jan. 2000 - August 2000 I was EXTREMELY stressed due to getting my mother's house ready for sale and finding a place for myself.  House sold in June and I moved into new place in August)  June 2001 Afib again and Atenelol increased to 100mg.  Dec. 2001 Afib again (in Florida while on vacation so no change in meds).  Feb. 9, 2002 Afib again and no change in meds.  All of these above instances I was hospitalized and converted myself with Cardazim and Digoxin IV's and it took between 5-16 hours each time.  Then my last instance was Feb. 25, 2002, went to the hospital again, and converted in 1hour.  They have now increased my Atenelol to 150 which I take 75mg twice a day.  I'm really sick of this and very discouraged as to ever finding a way to control/stop this.  I've had stress tests and EKG's and ultrasounds etc..  Can anyone give me any encouragement?  I've just turned 50/female.  I have just started to diet and exercise regularly but building gradually.  I feel great but what can I do next?

[Ricklong]

A related discussion, Please help me! was started.

[eppa2277]

A related discussion, A fib controls my life! was started.

[petebytham]

I have been suffering from Chronic Af for about 7 years. Not sure what started it, still nowhere near sorted in fact has now got worse due to sudden Thyroid Overactivity, following 6 months of not taking Amiodarone!! Never had a prob with the thyroid while I was on the drug for 3 years.
Now back in UK ( never even diagnosed here, diagnosed whilst I was overseas, in a poor Euro Country!!) I have been taken off theamiosarone which initially worked very very well and put me into sinus rythm within 3 weeks of starting it. Now on Digoxin at 250mgs /day and Warfarin..........result feel terrible 24/7
Good site at www. yahoo.com go to groups there is a group called Atrial fibrillation support. It contains 500 members all talkind about there situations and treatment etc

[dickyticker]

also visit   www.heartcenteronline.com/myheartdr

[dickyticker]

I was diagnosed with AF about a month ago.  Not sorted out completely yet.  Feel lost in space.  Waiting another 3 weeks before having echocardiogram (why?).  Holter only showed ectopics.  Feel medication is causing more symptoms than I had before first AF episode.... waking with regular thumping beats during night, experiencing them often during the day.  Told this is due to medication which has been halved .. no different.  At risk of being labelled a pest by cardiologist's staff.

Meantime I found the following sites very informative.  www.aboutatrialfibrillation.com/whatisaf.html  and   www.members.aol.com/mazern/index/htm

[ian989]

Hi
Ima 37 year old male that lives in the UK and stumbled across this site purely by accident.
I started suffering from afib when i was about 29 and was put on sotolol which didnt exactly do me any good , made me feel tired all the time and the only purpose of this drug was to slow the heart rate down..My GP (doctor in plain English ) at the time said that there was nothing to worry about as i was too young to have anything wrong with my heart.
I came off of sotolol and went onto flecanide , starting at 50mg twice a day , now on 100mg twice a day , i still get flutters and god are they uncomfortable ..fells like someones thumping my chest very hard on occassions , but after a while they become managable and they sort themselves out .Mt doctor seems reluctant to recommend any kind of other treatment at all , and after all these years of having afib i know absolutely nothing about it , my doctors seem to know even less and are extremely vague . Perhaps some kind soul could email me some info or even point me in the direction of any web sites that might be of more help to me.

[ian989]

Hi
Ima 37 year old male that lives in the UK and stumbled across this site purely by accident.
I started suffering from afib when i was about 29 and was put on sotolol which didnt exactly do me any good , made me feel tired all the time and the only purpose of this drug was to slow the heart rate down..My GP (doctor in plain English ) at the time said that there was nothing to worry about as i was too young to have anything wrong with my heart.
I came off of sotolol and went onto flecanide , starting at 50mg twice a day , now on 100mg twice a day , i still get flutters and god are they uncomfortable ..fells like someones thumping my chest very hard on occassions , but after a while they become managable and they sort themselves out .Mt doctor seems reluctant to recommend any kind of other treatment at all , and after all these years of having afib i know absolutely nothing about it , my doctors seem to know even less and are extremely vague . Perhaps some kind soul could email me some info or even point me in the direction of any web sites that might be of more help to me.

[racedriver]

I was recently diagnosed with atrial fibrillation @ age 61, and active with low colesterol, and no other problems. I feel fine, but had pulse of 130 and 40% factor. My cardiologist did echo EKG, thalium EKG, heart cath, and concluded that the drugs (digoxin and tiazac had slowed the pulse to a normal level (70), and that I should be on Coumidin, and prepare for electrical cardioversion. OKAY OKAY, a long introduction.

The reason for long introduction, is that the cardiologist is now saying maybe we should NOT do electrical cardioversion, and mentioned some recent studies. I checked for recent studies and found a very interesting one. On March 23, 2002 at Atlanta the results of a massive study were released....actually two studies that agreed. One study (AFFIRM) had 4,060 patients, and the other was called "RACE", with fewer participants. They concluded that controlling heart rate was as least as effective as controlling heart rhythm in patients with persistent AFib. At 3 1/2 year follow up there were actually fewer deaths in the heart rate group than in the group where rhythm was controlled.

I read results at cardiologyonline.com/Studies.

Don't know if it applies to you, but suggest you read the official reports.  It seems that a lot of cardiologist may need to change their recommendations favoring rhythm control, or at least rethink the issue and realize that controlling the heart rate can be a primary treatment method in some cases.

I'm still racing, I hope you can keep doing what you enjoy,

racedriver

[Jane123]

Hello Everyone, and thank you (literally) from the bottom of my heart. It is so encouraging to read your posts and know I'm not alone.

I had an atrial fibrillation episode recently that lasted for about 20 seconds, it really scared me. I have never had one that lasted that long. I have had about four or five much shorter ones over the past two years. This episode may have been brought on by lack of sleep, and too much physical exertion and alcohol the night before.

Here's my question though: the risk of stroke is what scares me the most (now that after reading your posts I don't think the a-fib will kill me).  Am I in fact at risk for stroke having had these episodes, although somewhat minor, for a couple years??? I am 40. What do I do next?

[MarTer]

To anyone considering an Amiodarone product (Cordarone or Pacerone) I recommend extreme caution.  My wife of 30 years (age-53)has a history of heart defects and surgery.  Three years ago she was put on cordarone to control her A-Fib, which it did not do effectively.  Last summer she underwent her 3rd cardioversion to correct the a-fib, then in the fall she began to have severe pulmonary problems.
Considering her history of 3 open heart surgeries, Marty has been relatively healthy.  The amiodarone has caused a pulmonary toxicity resulting in pulmonary fibrosis and will likely be the cause of her early death, rather than her heart.
From what I have found on the web relating to amiodarone, one may actually be better to take their chances with the a-fib, which is the position my wife is in now in addition to fighting to stop the progression of the pulmonary fibrosis caused by the drug which stays in your system from a few to several months, continuing to do damage to the lungs.
Amiodarone is a very dangerous drug, research it before you even consider taking either cordarone or pacerone.

[Stubborn]

My first time here (or on any chat/exchange group)

First I want to say Thank you for being here.
Second, I'd like to share my experience, in case someone else can profit from what has just happened to me.
Started being treated for High Blood Pressure Sept.'01 with
monthly or bi-monthly visits.
Did fine through the Christmas Holidays, then into Jan '02, came
down with a dose of diarrhea, left work, rested and eliminated
until early evening. Ate Mashed Potatoes with extra salt.
Next day stayed home until time to go to previously scheduled
Dr.s appointment. Dr. didn't like B/P reading so added
hydrochlorothiazide 12.5mg. I protested that I didn't need a diuretic, but was ignored.  More fool me!  I should have stopped
before I began. Took the 12.5mg dosage for 1 month.  Never feeling really bad, but not feeling very good either. Just before
next appointment I ran out of meds and my Dr. phoned a prescription into my pharmacy which combined my Rx for Prinivil
with the a doubled dosage of Hydrochlorothiazide, ie 25mg. Took
1 dosage, then the next morning had horrible heaviness in/over
breastbone,trouble breathing, biceps felt like each one weighed 50lbs or more, veins in forearms throbbed.  Got through it. Went to work.
Called Dr.s Office.  "Hydrochlorothiazide most unlikely to
cause such a response". That was Feb.13, 02. Friday the 14th
was a previously scheduled Dr.s appt.  Dr. Concerned, but still
"that is very unlikely to have caused such an episode". Had an EKG, fast but OK. Directed me to make an appt. for a Stress Test. Dr. gave me an Rx that broke the two components apart.  The next day I halved the hydrochlorothiazide. Checked with my pharmacist about "how soom can I back off this medication?" A: Immediately!
Have not injested any since; however the damage was done.
The slow dehydration, and then extra jolt had a negative effect on my electrolytes, at this point only suspected by me.  Following my Dr.s directions, I called a cardioligist, made an appointment for consultation, approximately Feb. 26th. Another EKG. Another OK. But scheduled for Stress Test. March 7th.  Never say Cardiologist. He was away on an emergency. Went in for Stress Test March 7th 12:30PM.  Got thru the injection of radioactive isotope. Drank the water. Had the pictures. Waited.  Went into the treadmill room.. got hooked up.  Tech say's "Anyone ever tell you, you have Atrial Fibrillation? A: NO.  what do I know about it.  I'm 55 yrs old, have been in the hospital to be born and to give birth 36 yrs. ago.  I don't get sick. I've had more trouble since Sept. '01 than ever before.
Finally.  I ended up in the hospital(released Sat. March 9th), because it was Afib with Heart Rate at 170 per minute.  Now I'm on Digoxin, diltiazem (this dosage has been increased), Coumadin (which isn't doing much-dosage has been increased once-get it checked again next week and then do follow up with cardiologist).  Have had an appt. with my primary care Dr. (the one where it all started) and this Dr. says "Heart Rhythm is Good, Steady, No blurps".  Can't prove it by me.  I can feel the strain, get odd "Sore Muscle" aches, both center and right,need rest, but afraid to go to sleep.  I'm telling all you this because when I stumbled on this website, it was such a relief to find others who are experiencing similar distrubances. And every time I think about the whole situation, I either get frightend or I get REALLY ANGRY.  Now I just wait it out.  But I will be better informed and more stubborn.Thank You.    

[MIchaelP]

I have wrestled with intermittent a-fib for 2 years. My cardiologist started me with coumadin and digoxin. I was already taking atenolol since having a mild heart attack 5 years ago. I had a real hard time with the atenolol, except on very low doses. The side effect was that I was getting depressed and generally feeling lousy. I am now on very low doses of digoxin and atenolol, recently started on amiodarone, and stopped the coumadin. I also had the ablation procedure, and it was only partially successful. Then I developed a reaction to the coumadin in the form of spontaneous hematomas. This new regime seems to be working well. I beleive aggressive treatment and follow up testing is the way to go. Also, depression is very common with a-fib, since it can dominate your life and be very frustrating to deal with. Good luck!

[Lyn2]

It seems that everyone responds differently to the treatment for a-fib.  I was put on tambacor and sotalol, rhythmol, dofetilide and finally amiodarone.  Amiodarone has been the only one that has worked for me.  I don't think your doctor would suggest that as a first option, and neither would I.  Though it works well to control a-fib, it has many possible side-effects.  Try the others first.  At this point you have alot of options.  You are certainly not at the end of the rope with choices.  Good luck.

[debra21784]

It's a nasty disorder to have ,have it and would love to give it away.Been on all the antiarrythmicsincluding flecinide and amnioderone finally went to the ablatation process.It's quick,only an out patient procedure and home after a couple of hours.What concerns me though is are you being given any anticouglant meds,even Asprin? Atrial fib is a big risk factor for stroke.My stroke occurre at age 47 after having a fib off and on for two years.If you haven't already seen a cardiologist, find one who will treat you aggressively and not just tell you you only need to worry about a-fib if you are over 65 (that's what mine did and I had a stroke at 47)If you don't have a cardiologist contact your major teaching /research centers in your area that are doing work in arrythmias and see some one,have a complete work up and even an electrophysology study.
Don't waste time,it's a serious disorder but treatable.

[CCF-M.D.-CRC]

Dear Doree,

Probably the next step for someone with increasing episodes of atrial fibrillation is to try an antiarrhythmic medication.  This is different from the first line medications (calcium channel blockers such as Cardizem, digoxin, and beta-blockers such as Atenolol) you have been taking thus far.  These medications only control the rate of the heart when you go into afib and do not prevent you from having an episode.  

Antiarrhythmic drugs that are commonly used include flecanide, propafenone and sotolol.  If these fail then third line agents such as amiodarone or dofetilide can be tried.  If medical management is not controlling the afib then a procedure called an ablation can be very successful (if done in the right centers) in curing afib.

You probably need to see a cardiologist if you haven't already been seeing one.  If he is unfamiliar with these drugs you can ask him to refer you to an electrophysiologist who is a specialist in rhythm disorders.

[Richard W.]

I think the good doctor has given some excellent advice.  I went through six years of the type of meds you are currently on and my cardiologist finally put me on Sotalol and my life is now normal.  My current internist has discussed the ablation route to permanently rid me of the malady and I am considering it.   But I may leave well enough alone and stay on the meds.  Other than remembering to take it twice a day I seldom give it further thought.  Prior to going on Sotalol I was 53 hours in a-fib. I don't want to go through that again.

[Barbara Teran]

Dear Doree,
  I was where you are about 15 months ago. I decided I wanted "my life" back. I am now on Tambacor, ( a very small amount which works for me), and I have my life back. Living with atrial fibs is stressful enough as it is. I highly suggest your talking to your doctor and seeing about using one of these drugs. I had to go into the hospital for 30 hours to make sure my body was OK with the medication. After I took my pills at the hospital, I have been fine. Every day at 2 PM like clockwork, I take 75 mgs. of Tambacor and thus far, I am doing really well. I am so thankful. If you need to email me, do so at ***@****. I would be glad to help if I can. Take care. Barbara