Six months and going backwards

This is my first posting and is rather long winded. I apologize but I’m at a lost on what to do next. Ever since the installation of my pacemaker, it seems my health is deteriorating quickly.
I am 48 years old and have been athletic and very fit for the majority of my like. (Ideal body weight, no smoke, or drink) I have had yearly physicals, for the last 15 years and was told I was the picture of health. Until last September 2009 that is,
I passed out Sept. 2009 and was run through the following tests:
- Stress Test & Stress Echo
I passed both test with flying colors.
The doctor told me that he felt it was a vasovagal syncope but wanted me to wear a halter monitor for 3 weeks.
During the third week, I passed out again, and was told my heart stopped for six seconds. I was immediately called and told I needed a pacemaker. Trusting the doctor, I went in the following morning for my pacemaker install.
For the most part things appeared to be going well until an A-Fib attack in March 2010, which required hospitalization to get under control. They currently have me on 50mg of Flecainide (twice a day) and Diltiazem 120mg once a day. Since being on the medication I am tired all the time.
At my check-up last week, I explained that since the A-Fib attack I have been experiencing light-headedness, tired, with a feeling of pressure at the very top of my chest, directly in the center. The doctor had me take another Echocardiogram after which had me take a Bubble Echocardiogram. Upon completion of the tests he tells me I have a hole in my heart allowing oxygenated blood to get into the left side of my heart. He then goes on to tell me the left side of my heart has enlarged. Asking him to explain, he quickly says, either your paced side has gotten lazy or the hole in your heart is creating the problems.
He has now ordered a Tran esophageal Echo to determine the existent of the hole.
Has anyone else experienced this? Could the pacemaker have caused these new problems?
Any console would be most appreciated,
Many thanks,

7 Comments

AF and left heart enlargement

by golden_snitch - 2010-04-13 01:04:01

Hey there,

it's really hard to say because if you do have that hole in your heart (I'd guess it's between the atriums, a so-called atrial septal defect) this can be the cause of arrhythmia, especially Afib, and heart failure, too. Even though you have so far lead a perfectly normal and active life, this can be a long-term complication.

Do you know how much your are being paced? If you used to pass out only occasionally, you should have a very low pacing percentage. However, if the percentage in the ventricle is high, it could be the case that the pacer is pacing although it doesn't really have to, and studies have shown that this (or better: right ventricular pacing in general) can lead to heart failure and Afib. That the pacer paces in the ventricle although you have a stable rhythm most of the time, often is a problem of settings, for example when the AV-delay (the time an electrical signal from the atrium needs or is allowed to need to reach the ventricles) is programmed too shortly. So it would be important to find out about pacing percentages and settings.

Hope this helps a bit.
Best wishes
Inga

Time To Go Forward

by SMITTY - 2010-04-13 03:04:10


Hello MJF,

Welcome to the Pacemaker Club.

First, I think your passing out is a classic symptom doctors look for to decide if a person could benefit from a pacemaker. I can understand your puzzlement of "why me" when you have enjoyed such good health and physical condition apparently all of your life. Passing out is a symptom of vasovagal syncope. A document from Mayo Clinic describes the cause and result of vasovagal syncope as "Your heart rate slows, and the blood vessels in your legs widen. This allows blood to pool in your legs, which lowers your blood pressure. This drop in blood pressure and slowed heart rate quickly cause diminished blood flow to your brain, and you faint." So, as many others have done, you got a pacemaker to solve the problem.

In my estimation your problem is one of those that pick no favorites. Like a person having to get glasses, or hearing aids, when they are near perfect physical specimens. In this case you got a pacemaker to stop your heart rate from dropping to a low level which was resulting in the vasovagal syncope.

The only thing I will say with reasonable certainty is that the pacemaker is not the cause of your current problems. About the only thing a pacemaker can do is fill in for your heart's natural pacemaker when it fails to keep your heart beating as it should. Now for the disclaimer. If a pacemaker does not have the proper settings for a particular person, all sorts of heart rhythm problems can occur.

As for the hole in your heart, I don't see any way for a pacemaker to be responsible for that. Since our heart has 4 chambers, right and left upper (atrial) and right and left lower (ventricles) which all contain oxygenated blood, I do not have a clear picture of where the hole may be, not that it matters if I do, or do not, know that. I have heard of the heart wall being punctured by the tip of a pacemaker lead. This can happen when the lead is attached to the heart wall; of it may happen later as a result of the constant flexing of the heart wall in contact with the PM lead. If you are not familiar with how leads are held in place within the heart, they are attached to the heart wall by either a barb, similar to the one on a fish hook, or a tiny cork screw like tip. I have no idea why the different types are used, and in fact in the case of my two leads one has a cork screw tip and the other has a barb.

Last but not least. The medications you named can cause some of your current problems. The flecainide was probably prescribed to purposely slow your heart rate and let the pacemaker maintain a minimum and suitable constant rate. The diltiazem (which I have been taking for 25 years) is for the control of arrhythmia and to control blood pressure. While I have never taken flecainide, I have had other arrhythmia control medications and FOR ME it as been a case of the cure was worse than the illness. The diltiazem has been a problem when the dose I was taking was not what I needed. But that is one for your doctor to decide.

I know I have not answered any questions for you, but I will repeat that I do not think the pacemaker is a player in your problems, unless the settings are total out of kilter. There one thing I would suggest that you keep in mind, is that if you don't get the results you need shortly, consider seeing another doctor. Doctors are like most of us, when the solution to a problem is not obvious we can develop tunnel vision and continue to be puzzled as to why what we are doing is not working.

Good luck

Smitty

Hole in heart

by ElectricFrank - 2010-04-13 04:04:24

There is one remote possibility that the hole is related to the pacemaker, or more correctly the leads. We have all heard of cases where a hole was punched in the outer heart wall causing a major medical emergency. I'm only speculating, but it is possible that when they installed the leads they punched a hole in the septum, which wouldn't be as obvious.

As for the original problem of passing out, it seems that being in good physical shape isn't much help in preventing an electrical conduction problem. An infection can mess up the heart even for those that do every thing right.

My father used to say that "If you eat right, exercise right, avoid smoking and drink, you won't live longer..it just seems longer".

I see you are an engineer. As one myself I suggest approaching this whole thing from an engineers standpoint. Be sure you have a doc who understands the electrical system of the heart. Most cardiologists are good plumber, but poor electricians. They tend to throw meds at everything and haven't a clue when it comes to programming a pacer.

I am an electronic engineer. I only have my pacer working well because I built my own ECG, downloaded the technical manual on the pacer, refused to take meds, and specified the settings I wanted.

One last suggestion. If things don't work out you might try the Cleveland Heart Clinic. I have only heard good about it and you aren't too far from them.

frank

Thanks

by MJFeenstra - 2010-04-13 04:04:48

Thanks so very much for all your comments. You have supplied more usable info than my doctor.

Thanks again,

Obsolete meds

by ElectricFrank - 2010-04-14 01:04:35

That's a common problem. A doc will put you on a med to try to solve a problem. They when it doesn't work and they go to a pacer no one thinks to stop the med. The result is a bunch of unnecessary and nasty side effects.

frank

heart holes

by riodog - 2010-04-14 12:04:31

At the age of 67 I went to UCSF and they closed a hole in my heart that I'd been born with. They used an Amplatzer ASD Occluder which looks like a small umbrella. The Dr. went up thru the groin and I got to see them open it to close the hole. I had had some heart problems before that and my EF had been dropping significantly. It did a good job with my EF going up to 55. Then in 2009 my EF was down to 20 and I was implanted with a Medtronic Consulta CRT-D in an emergency procedure. After nearly a year of feeling bad, I got my Dr. to take me off amidarone and it has been a relvelation to feel so much better. For me that medication was toxic. You might want to check your meds for side effects. They can affect so many things. My Dr. has promised if I need that kind of med again he will not put me back on it. My symptoms were extreme fatigue, SOB, dizziness etc. etc.
Just another thing to check on. Good luck.

gretchen

Can relate...meds!

by Heidiglassmeyer - 2010-06-07 08:06:34

Hi!
I know this is an old post but I am new to the club and reading posts. Hopfully your issue was resolved. I had a similar situation 3 months with PM. My EP told me 2 mo. after placement that I now had afib? That issue was never identified after wearing an implanted monitor for 6 mo. He placed me on Flecainide 50 mg to start. 5 days later I could not get out of bed without feeling faint and dizzy. I went in and found out they had not made the adjustment to my settings to account for the meds! Go figure! After the adjustment and an increased dose of Flecainide I am feeling better but still have some issues. As far as the hole in your heart, hopefully they have figured that out by now. Best of luck to you!

Heidi

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