Multaq Anyone Else Take It (Page 29)

Okay I will start off by saying this drug scares me because it has not been out for very long. I have Afrial Fib which is not behaving I can be 70 beats one min and regular and the next I will be at 190 and in atrial fib and flutter. this is my last chance at a med I have tried all the others I usually end up in the ER two or three times a week. I have had one ablation so far. If anyone else takes it please let me know what it is like. I am starting it on Tuesday.

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Trapper, you've said it all. Enjoy your guilty pleasures!

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a couple of clarifications: I never said no alcohol. Alcohol in moderation is usually tolerable by most a-fibbers. God knows I love my beers and wines. Alcohol in moderation is not a heart stimulant or irritant, but illegal drugs, prescription stimulants, caffeine, decongestants and MSG certainly are. I try to stay away from sugars and sweetners, but for other reasons. And I do believe in getting plenty of potassium, calcium, magnesium and zinc.

If I didn't have all the scar tissue problems in my left atrium and pulmonary veins from previous ablations, I would be certainly be taking dofetilide (Tikosyn). I do believe it is the safest and best antiarrhythmic for people who do not have long QT syndrome. But not many hospitals, Cardiologists and EPs are trained and registered to prescribe and start you on it, as is specially required, so dofetilide (Tikosyn) usually gets no mention or endorsement by local heart specialists. If you make the startup without problems, it is very safe. A-fibbers should know that, because dofetilide is the most effective antiarrhythmic other than amiodarone, but without all the negative side effects of most other antiarrhythmics. I am not in the business and own no stake, but want a-fibbers to know this.

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Hi Steve. I speak with my tongue planted firmly in my cheek after years of conflicting advice. As we all see from this message board, people are SO different in their responses to meds, surgery and "guilty pleasures". I was not refering to you in my comment about no alcohol. A mere 20 minutes of internet search will reveal a dozen different opinions, from equally reputable sources, regarding what to do or not do, or what to eat and not eat. Even physicians in the same practice can give completely different opinions as to what to do or not do. Once within 20 minutes, I had one cardiologist tell me to strictly avoid exercise, and another tell me to get lots of vigorous exercise.

The other day when the big overblown red meat scare was butchered (pardon the pun) by the news media, I read a report that many Americans are missing some vital amino acids and other nutrients by avoiding red meats for "their health".

I consider many statistically based "reports" nonsense. Statistically, you could say that the rise in afib worldwide is caused by global warming, and conversely, you can also show by statistics that global warming is caused by the rise in afib cases. Sure this is pure nonsense, but some of the conclusions based on statistics I've seen cause me to just shake my head in wonder at the stretch needed to make the cause/effect connection.

Do what works for you! There are things i used to enjoy that I've given up because of personal preference and research, and I feel that is best thing for me - but that's just for me.

It amazes me that my wife eats cereal and milk and feels energized for the day, yet I eat cereal and milk and immediately feel so tired I want to go back to sleep. We metabolize carbs very differently.

I've wondered about MSG or other similar triggers myself. One for me might be chocolate. There are lots of things I would need to add back into my diet to see if I would get a trigger. I eat a pretty plain, mostly vegs and fish/chicken diet now, so one day I might start adding things back in to see if I get a trigger. Don't know if i want to chance it or not.

Thanks for the tip about Tikosyn. I'll ask my ecp about it if I should need afib help again. Sorry you've had such a rough go of it with meds.

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Trapper: i agree on that. It is strange that I do like dark chocolate and it seems to have no effect on my heart. And the doctors all tell you to avoid it. I can not tell any difference between eating dark chocolate every day and skipping it for a few days. Y'all can tell I am an addict as i buy it in 3 lb bags of Giradelli 60% Dark Chacolate Chips from Sams. It last me a while but I do proabably buy one a month. Life and my decaf coffee seem to be a lot better with it ;-)

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I am on Multaq after being on Amiodorone following a Cardiac Ablation on Mar 1, 2012. Amiodorone. I had 9 side effects including shortness of breath. I told my EP. He switched to Multaq. No side effects but it is not working for me. A fIb episodes every 2-2.5 days . note: it is better than the deadly amiodorone which failed to control me with episdes every 1-2 days. I wonder if there is anything else I can take.

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Dear Busycloud,
My heart really goes out to you. Every other day -- and that, AFTER an ablation? Holy cow.
When I was in the CICU, nothing worked BUT amiodarone. My b/p is too low to take meds every day, so I'm on Flecainide and Metoprol AS NEEDED.
Just for the sake of your sanity you might want to consider finding a good yoga instructor for deep breathing and calming postures. It's not a cure, but it's good for your soul. Wishing you well...

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What seems to have worked for me is twofold:

I take magnesium supplements. Before my cardioversion, they calmed the afib down - didn't eliminate it, but I could tell a definite change in the character of it. I also made a dramatic change in my diet to help eliminate any esophageal and stomach problems causing bloating and reflux.

After the cardioversion, I was on Multaq and continued the magnesium and dietary changes. Since, I've dropped back on the Multaq dosage, and have now stopped it altogether, and continue in NSR.

Magnesium deficiency is generally not tested for, yet some research studies I've read say low magnesium is one of the prime causes of afib in many people.

As is obvious from many people's experiences here, what works for some does not work for others.

Steve, on a different note, I thought of you this weekend when a story popped up on Yahoo news about how dark chocolate has a very positive effect on heart health, similar to statins.

My chocolate trigger seems to come more from the reflux potential of it. My afib episodes had always seems to have been tied to reflux and stomach upsets and bloating, and vagally induced. Fortunately, that has all calmed down, hence my reluctance to start back on chocolate or other things that trigger the reflux or other stomach issues.

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Oh my lord, I must be psychic

iceagenow.info/2012/03/study-blames-obesity-rising-co2-levels

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God Bless you all, here is my story:
I'm 49 female non-smoker recently diagnosed with dialted cardiomyopathy, left bundle branch block, high BP, AFIB with a EF of 45 April 3, 2012. Symptoms: I first had heart flutters not fast just a slow flutter went to my family doctor had a EKG which showed there was something wrong with my heart. I went to see a cardiologist in Northern KY who had me wear a heart monitor and take a Echo exam. I really did not think much of what was going on because we were laying people off at work and I was extremly stressed out so I figured the heart palps/flutters were normal due to anxiety. On my return visit to the cardio doctor he sat down starting reading my results and said my EF had not failing very much from 2003, that is when my left bundle branch block was first diagnosed I had been taking no medications for my left bundle branch block. He also told me I had dilated cardiomyopathy, high BP and AFIB. I sat there still not knowing what he was talking about except for the high BP, he gave me prescriptions for 4 meds and told me to look up my illness up on google online. He also said you will need to start walking and cut back on salt and I could have a beer every once in awhile. I still did not think very much of this even waited a day to have my prescriptions filled. Went and had the prescriptions filled with little care or fear.
Pharmacist said as I was driving away I hope you feel better, wow I never felt bad what was he talking about. Still I just went on cluless to what I really was diagnosed with. Then it happened I started looking up my diagnosis online....OMG what a mistake I freaked out, there is so much misleading information on the internet. I was even more streesed out thinking am I going to die will I have to go on disability what about health insurance what about my horses and dogs can I sit in the hot tub can I ride my horses? If my job finds out they may let me go next time? Well I have cried everyday since April 3 and today is the 18th. I have a full time job and I'm the director of the department. Thank God he has been with me, there are days I can barely go to work the meds made me feel tired, bloated,sick, and make my chest feel full. On top of this my ears are ringing at times like crazy keeping me up at night and making it hard for me to concentrate driving let alone performing at work. So far so good I don't think anyone at work has noticed any change in me. Personally I feel like my joy is gone. I have decided to get a second opinion my neighbor was a coreg sales rep and she insisted I go see a cardiologist she knows in Cincinnati Ohio. Well today I called and the cardiologist actaully called me back personally and made an appointment. I do not know how this will turn out and I'm very hopeful that I at least get a full explanation of what I have and if the meds are right for me or not. I suggest everyone get a second opinion if nothing else to prepare you to be able to face this head on and not have to rely on the internet for questions that nobody seems to know how to answer. I have read these posts here and there are so many questions but very few answers. I will repost after my appointment on Monday at 4:30. I wish everyone who reads this peace and grace.

These are the meds :

Multaq 400mg 2x a day
Pradaxa 75 mg 2x a day
Lisinopril 2.5 mg 1x a day
Bystolic 2.5 mg 1x a day

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Hi Deb from Cincinnati,

You seem all upset about this and no wonder, you do need a doctor who will explain these things, what you have, and what it is, how did it came about and is it easily controlled with meds, instead of you looking up these things on internet.

Multag I would not touch with a ten foot pole - that is probably making you tired and bloated - I was allergic to Lisinopril and had to stop that, right now I am taking HCTZ as a diuretic, Pradaxa is a relatively new blood thinner, at the moment I am on Coumadin.and the 4th one Bystolic I am not familiar with at all - internet mentioned it is also used for hypertension.

Good thing you are going for a second opinion - make sure you have all your questions on paper - one good idea would also be to have your friend go along, sometimes two sets of ears is better than one.

Good Luck to you. You are so young to have these sort of problems.

I have written on occasion on this blog - I will be watching your comments.

Have a good evening. An do not worry, easier said than done!! If you worry and are anxious your heart just will beat faster and faster..

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Thanks Tootsi and yes I will post my results, I see the cardiologidt thru Good Sam in CIncinnati on Monday I need to know so I can deal with and try to get my joy back. The unknown scares me so...

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Deb in Cinnci...I was shocked that the cardiologist told you to go home and look it all up on google. That is a cardiologist you DON'T want. What you should look up on google is his credentials, and the bio or rap on ANY cardiologist you see. DEFINITELY get a second opinion, and definitely research THAT physician, too. Google is only your backup to further inform yourself so that you can ask your cardiologist a lot of questions!

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You are correct I'm going to a different cardio today 4-23-2012 Amazing how a Dr. can send you home with four drugs that knock you on your butt and mess with your mind without giving a heads up
I'll post after I find the facts. Thanks so much

Deb

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Second opinions count if you are not sure and have a gut feeling that something is not right go on your instict. I had my appoitment with my second opinion cardiologist at Good Sam in Cincinnati. This doctor told me the medicine I was on bystolic was dangerous because no studies had been done on folks like me with my condition, this drug had side effects of damaging the liver. He is switching me to Coreq today. I also discovered that with the right medication I can improve on my EF and possibly eliminate some of the medications. Another major discovery I found out yesterday after my new doctor is able to read the Echo I may only have to take baby aspirin instead of pradaxa.
All this is a far cry from being told from my first cardiologist that I would be on all four drugs from my original post for the rest of my life. My new cardiologist told me my worry is not accurate I need to relax and enjoy my life. I can sit in the hot tub no more than 10 mins, ride my horses, continue to work, and live. I know the good lord had a hand in all this leading to my friend Shelly who lead me to my new cardiologist and I'm so grateful. I will post my progress as it comes. Good luck to all out there you are in my prayers.

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Good wishes to you, Deb.

If you do wish to read some more on the internet that is probably about as accurate and balanced as possible, I recommend Dr John Mandrola's blog at
drjohnm.org

By the way, he is in Louisville.

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Update
I have been on the meds now for 6 weeks, overcoming the side effects is becoming easier. I have noticed less weakness and I have lost 18 pounds which yes I needed to loose weight for sure. I have changed my diet and been exercising. I still have Afib and the doctor is upping my coreg next visit at the end of June. Good luck to all and try to have hope that was my biggest fear, what was going to happen to me. I'm able now to get my head around my condition and try to be as active as possible to deal with my condition

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Hi Deb from Cincinnati,

Thanks for your update - good luck to you!!

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Deb: My A-Fib for over 20 years (now I have occasional left atrial tachycardia from ablation scar tissue breakdown in my left atrium) and various arrhythmias for 27 years, and for the vast majority of that time took nothing but a full size aspirin a day. Only when needed to prep for a procedure or cardioversion, have i used regular strength warfain (7mg/day for me) or 300mg/day Pradaxa. I have never had a stroke or TIA event and am now 67. I am active, exercise regularly, stay hydrated and watch my diet and supplements. Nowadays, in addition to the 325 mg aspirin, I also take low dose 2.5mg/day warfarin and a Ginko Biloba supplement tab for my DIY stroke prevention. I have no cardiovascular disease so this regimen can work for me. ...not recommending this for everyone but just putting this out here.

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Your story is inspiring thanks for sharing. Episodes of Afib are scary for me. It is really strange I went to the cardio for PVCs. Now with medication I seem to have more PVCs or I'm just more attentive to my condition.
Last night I went out with friends for dinner and had an anxiety attack and could not eat. Geting older is tough but with hope and faith I can get through these trying times.

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Deb: there are lots of different conditions, no doubt, but PVCs are not what I had when in A-Fib. It is a separate arrythmia and usually not too serious unless it gets so frequent that you get faint. Usually I would only get PVCs when in normal sinus rhythm. It feels like a thud followed by a gap between beats (some people call it a missed beat), and then it starts in normal rhythm again. At least thats how mine was. Unless it is debilitating, it is usually not a serious situation. A-fib has its own signature in that it is irregularly changing irregular heart beats. A-Fib constantly changes. A-Fib runs at a slightly elevated rate, like maybe 30-40% faster than normal. but is even hard to take a pulse rate because some beats are strong and some are very weak. You need to be more frequently checking pulse because all these various arrhythmias have a different pulse rate signature. Some may be tachycardias, some A-Fib, some A-Flutter and some PVCs, and some are 'other' that might even fall into the 'sick sinus syndrome' category.
When in normal sinus rhythm I sometimes get what I call a 2-step (I it named after the Cajun and Zydego dance step) where it feels like 2 normal beats followed by a gap or skip, and it keeps on repeating. It will usually go on that way until I cough or if lying in bed, roll over on my left side. That usually ends the 2 step but earlier on in my condition would opften iniate my A-Fib - go figure! Unfortunately, we sense most all oif these arrythmias and have to learn to manage them where we can, and live with them where they are really uncomfortable. Meds have to be 'played with' to find the right levels and combos for you. And that can change over the years. There is no one size fits all. Right now I am trying two different Class Ic sodium channel blockers together (flecainide and propafenone) to try to maximize effectiveness while reducing side effects.
By the way, depression is one side effect of some of these meds, and panic attacks can be created by our minds when we have no knowledge, confidence or faith in what we are doing and are fearing for our futures. Everybody with these issues should understand that this condition requires a journey, and that there is often no quick and sure solution except for perhaps simple SVT which seems to be easily cured by right atrial ablation. We patients have to keep up to date enough to be able to know pretty much what our EPs know. And I would stay away from old-time cardiologists, because the only some of them know are cures are clogged arteries and installation of pacemakers (which I am trying to delay as long as possible, but the need for delaying pacemaker installation is another story).

It should go without saying, but I will say it anyway for those that may be uninformed - if you are looking here at this websire, you need to avoid caffeine most commonly found in coffee and soft drinks, avoid decongestants of any type, and avoid MSG. Avoid lidocane and some other drugs. And obviously we want to avoid stimulants such as various forms of meth, to avoid terminal cardiac arrest.

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