any suggestions

It's been a while since I have written. For the past year I have been in afib all the time and can't convert; I also have sick sinus syndrome. I have not converted despite several months on Amiodorone (200mg qid) and a cardiovert (OUCH!). Have been on the following: Toprol, verap., coreg(minimal dose) and now on cardizem 240 LA; I will stay w/coumadin as the risk w/out it is far too great. I have been to 4 cardiologists -- one being the local chief of 'this' and head of 'that' who seemed well studied and well targeted-- and here's the result: Laser surgery would end the afib and I already have a dual chamber pacemaker, but there's no way my insurance will cover that. I have 3 medicines to choose from (in order from least side effects) Cardizem, Amiodorone & Betapace. Given the afib, sss & consistent episodes my heart remains enlarged and at this rate I've got a fairly limited lifespan.
I do the potassium/magnesium routine, do protein shakes, no caffeine etc. I spend most of my time exhausted and have maybe 2 good days a week where I'm productive. Life is very different -- I'm 48 and was in reasonably good physical condition; I look like I'm in good shape, but I could take a nap any minute. I've been thru Lars' book and found reducing my stress reduced the severity of episodes and made the dietary adjustments. Yep, I have a stressful job, but cannot afford to quit, take a salary reduction and disability would send my family into the poorhouse (read street). The awful depression has been quelled by Zoloft most nicely.
Any other suggestions/avenues.

Where do you live, 48 is young for many of us, and I decided to not give up and find a doctor who would fight for me and get me back to normal. Don't give up keep up the fight and you can win.

even with AF all the time, a cure is possible.

babb

Sam,

I can't tell you how saddened I am to hear of your situation. Could you provide some more info. Can you tell us why the pacemakers were installed, what type of heart disease you may have and exactly what type of laser surgery they are talking about.

I don't know your background, have you determined the status of your AF. Are you LAF or do you have a contributing factor that would take you out of this category? If you are LAF or perhaps even if not, which it doesn't appear to be due to your Pacemaker and enlarged heart (is it CHF?), have you determined if you have tendancy toward the vagal side or the adrenergic side?

I have seen you post some about nutrition, so I will assume you have some knowledge of it. How is your eating beside that...do you avoid the glutamates, sugars and trans fats? This of course could be a large cause of your problems.

Dr. Pauling, Rath and Patrick Holford, have as close to "iron clad" proof as you can get about the importance of Vitamin C, especially in your situation.

High blood pressure, Diabetes, High Cholesterol or any glycemia problems?

How is your aerobic state with your pacemaker, what are the restricitons?

Fran and Jackie are excellent sources of diet and nutrition and the experts on it around here, no doubt they might be able to guide you in some way or another....also there are so many others, that you may already know, that will be sure to help if they can. I have read this site for about a year and have only been active in the last few months and will try to give you any help I might be able to render, if possible.

Take care and I'll keep you my thoughts and prayers,

Joe

Sam
Sorry to hear of your predicament .I really admire your ability to work through it all. I find my occasional bouts bad enough. You are obviously a fighter try and find a way arround the money issue for the opp. I know Fran cured her AF by diet and her heart recovered. People have already said the body is an amazing if finely balanced price of engineering, it can repair itself. I don’t think we will ever understand how it all interacts but there is nothing like trying. Like myself in our forties we are still young everything is possible.
Chris H

Well thx for the responses, here's some more info:
The sick sinus synd. was the reason for the pacer implant--heart rate dropped into the 30s and wouldn't wake up, plus the afib on top was making me feel like I ready to sleep in the morgue. I have low blood pressure, always have, excellent cholesterol levels and shy away from sugar in most everything. OK, so I really did have a handful of bon-bons but that's it. No soda, no refined snacks, eat a candy bar about 2-3 times a year (Zero bars are my weakness). I was diagnosed w/afib in '99 but remained asymptomatic until last year when all hell broke loose. A heart cath revealed that I in fine fettle artery-wise as well. I have a Dr who feels my symptoms are exactly like hemochromatosis, but I keep checking out negative for that.
I'm a vegitarian and have been for 25 years -- I'm 6'3" and 230lbs, so I'm no light weight. I used to tip the scales at 215-220 and felt a bit better but these last 10 lbs won't come off. I eat a lot of fish, soy protein, salads every day , a moderate amount of bread --typically fresh. I do a vitamin B complex burst in the morning: liquid right into a protein drink, soy powder, soy milk no sugar. If I have sugar I may use pure maple syrup or honey.
With the Sick Sinus my heart rate may jump to 150-180 and then I'm gasping. At other times, the pacer keeps me @60. I really have a hard time with elevating my heart rate, especially doing minor yard work or home maintenance, it just seems to go out of control.
I know, this is getting really long..
The laser surgery I heard about is a procedure that sounds like a total ablation, section by section thru the entire atrial.... I believe there's something in yesterday's Wall St Journal about it. In that the procedure is unrealistic, I didn't pursue that with the specialist-- that Dr said he didn't know of too many places offering that type of procedure, Havard he mentioned, but didn't mention Cleveland Clinic.
I have a few weeks before I get referred back to another cardio, but those around here will monitor, not aggressively treat. It's like they're all baffled by it so they give this ailment short shrift.
SD

Sam,

I have reviewed some of the literatue as it pertains to your syndrome and have found some information that may be of interest to you.

Cardizem is a Calcium Channel Blocker and Amidarone and Betapace are both Anti-Arrythmics. Toprol is a beta-blocker and verapamil is also a Calcium Channel Blocker.

Type IV drugs such as cardizem widen the blood vessels and may decrease the heart's pumping strength. They are often used to treat high blood pressure, but usually are not prescribed for people with heart failure or other structural damage to the heart. Because you don't have hypertension, this drug may cause you to have a good drop in overall systolic/diastolic levels.

Interesting is that SSS is usually a bradycardia type of SA malfunction, which would explain your lack of being able to get up to speed on yard work, but the sudden jumps are not characterestic of such SSS. This seems to be more charactereistic of the straight forward diagonosis of bradycardia-tachcardia syndrome.

There is a chance that some antiarrhythmic drugs (and other types of drugs) may cause new heart rhythm problems, or make existing ones worse. If you have an arrhythmia, it is important to consult with an electrophysiologist or other physician who is an expert in heart rhythm disorders and the medications available to treat them. More than 80 marketed drugs, including some that are not used for heart problems, have been found to block potassium channels, prolong the QT interval (the time it takes the heart to recharge after each beat) and induce a fatal heart rhythm called torsades de pointes in some individuals.

Usually beta blockers are prescribed for SSS when tachcardia seems to be the problem. The blood thinners are presribed when somebody in SSS also has AF for obvious clotting concerns.

The presence of a dual chamber pacemaker is supposed to stop the afib from occuring. In the largest clinical trial of pacemakers conducted in the U.S., researchers found that patients with Sick Sinus Syndrome benefit from dual chamber pacemakers. They are less likely to develop atrial fibrillation or mild forms of heart failure compared to people who are treated with single-chamber pacemakers. You may want to check if your pacemaker is a RATE responsive type, this type has shown to be more natural in heart rate variability resonse. Not all are, this might help you out quite a bit as far as doing day to day things.


BETAPACE AFTM (sotalol hydrochloride) is contraindicated in patients with sinus bradycardia (< 50 bpm during waking hours), sick sinus syndrome or second and third degree AV block (unless a functioning pacemaker is present), congenital or acquired long QT syndromes, baseline QT interval > 450 msec, cardiogenic shock, uncontrolled heart failure, hypokalemia (< 4 mEq/L), creatinine clearance < 40 mL/min, bronchial asthma and previous evidence of hypersensitivity to sotalol. I would be careful about this one, put you do have a pacemaker so it is an option.

I have found a good site that may help you as a reference for your journey with this. Your condtion is unique and you should spend the time to find out how each drug will effect you, as should all of us! Take the time, no one has more interest in your well being thatn YOU!

Please SEE the link below for a good medical resource on SSS:

Joe

[www.naspe-patients.org]

To: J. Pisano
Some of what you say alludes me, but here's where I'm at as far as I know for sure.
The pacer I have is dual, but I can't tolerate both sides so it's running as a single chamber, however, it is rate responsive. The SSS is have is bradycardia-tachcardia syndrome that's been confirmed on 3 different tests. The cardizem appears to help in keeping my BP in place and nicely average. The episodes of an event may be short-lived, but the after effects seem prolonged. Wouldn't you know I've been on a monitor a couple of times and I have episodes of a rapid & irreg beat along w/chronic afib while I've been on 3 different meds.
There is no EP specialist in this area who really can treat more than what I've been thru in my insurance plan and there's no way I can do 10% of out-of-pocket. I'm dead-ended regarding medical care for now.
About 1-3 times a month I've taken a small dose of a synthetic opiate -- Lortab or morphine -- and it not only snaps the episode it erases discomfort/anxiety, and I seem restored to some energy for several days afterwards. I'm very wary of how effective it is, but the potential for addiction is way too high. My primary is extremely wary about prescribing any opiates for anything other than significant pain, but have you heard of that medication having adverse effects at the rate I have been taking?
SD

Sam,

Just out of curiosity, how is your thyroid? Low, high, normal?

Sam:

You seem to eat a lot of soy products, soy, unless it is fermented, really isn't a good thing. I have a link that gives a lot of info on soy [www.soyonlineservice.co.nz]

If you have been reading the BB, you will note that a lot of people feel much more energized on a higher protein diet (meat) vegetables/fruit and some whole grains.

John brings up a good point about your thyroid, a sluggish thyroid can make you feel lousy, it also can cause afib. It will for me if I am over-medicated or under-medicated, soy interferes with thyroid hormone receptors.

I was diagnosed with SSS and have a dual pacer, my problem was when I was in afib and would convert to NSR my heart rate would plument and I would almost black out, the pacer is set at the low rate of 50, I no longer have that problem.

It is a bummer being in afib all the time, however, I know an old gentleman in his 80s' who said that he was in permanent afib since his teens, he said he played tennis, had a stint in the army, raised a family---he said that he very rarely felt his irregular heartbeat, his meds are coumadin and lanoxin, he is still ticking.

Liz

Sam: You said "The pacer I have is dual, but I can't tolerate both sides so it's running as a single chamber"

That shouldn't be. You shouldn't ever "feel" a pacemaker pace. Do you know that the electrodes are in good placement, and that you don't have a ventricular perforation" If the V lead goes all the way through, it will capture your chest wall, causing the contraction of intercostal chest wall muscle. That happened to me, and they eventually had to turn off the V lead and just rely on the atrial electrode. You can only do that if your AV conduction system is intact. So you must have no heart block. An echo would show if you have a ventricular perforation and an honest doctor who will tell you the truth.

Can you post more about your suggested laser surgery? It sounds more like a "maze" procedure, when you say many areas, but that procedure is old and was probably the first procedure attempted for atrial fib. The other possibility is AV node ablation. May be a consideration since you already have a pacemaker and nothing else seems to have worked. I don't usually say that, as it makes you 100% pacemaker dependant, but since it is causing you such distress, perhaps it is something to consider. The underside is your age. At the present time, I believe the life expectancy of lithium pacemaker batteries is about 10 years. That would mean a new pacemaker (battery) every decade. On the upside, perhaps by the time you needed a new battery, they may have a greater life expectancy. Some people who post who have had AV node ablations are not unhappy with them. They feel great and life gets back to normal.

Money should not be a concern when things get that bad. Ten percent? Pay $10.00 a month if that's all you can do. Go see a good EP. Another thing is, if you have been on Amiodorone for months, and see no improvement, then it's time to get off it. It's doing you no good and may be doing you some harm.

Just my two cents.

God Bless You,
Pam

Sam, Pam,

I seem to remember a research article about the placement of a dual mode pacer. If I remember correctly, the placement of the electrodes had almost everything to do with better heart pacement and heart rate control. The article talked of moving the electrodes to different places. I will see if I can find the article, as it may shed some light on this.

I also am not familiar with this blanket lazering technique do you the name?

Joe

Pam,

I found the article it was on medplus.
Here is the link:

[www.medscape.com]

You will have to subsribe to read it, but you will be able to for free as a nurse.

Much of the information is new to me and no doubt you will have a keener eye for detail on this than me, with your experience in this.

It talks much about the placements and the rate control. It is a research that is well done and contains many footnoted references.

I am going to re-read it some time in the next few days.

Joe

Hi Joe, and thanks for the link. I did read it and it was very interesting, but it is more in line for patients with left ventricular failure and talks about the advantages of pacing both ventricles, the left through an epicardial electrode, which is placed through a thoracotomy. So it doesn't really apply to standard lead placement. The optimal location for the ventricular lead is in the intraventricular septum. That way it will stimulate both ventricles, while there is no risk of ventricular wall perforation, as it doesn't come near the ventricular wall. Typically, it may be hard to land it just there. Not too much can go wrong if can get it precisely there. If not, there is about a 1 cm? space in the ventricular wall to get it placed in without perforation.

Thanks, Joe,
Pam