Pacemaker syndrome?

I was wondering if anyone has been dx with pacemaker syndrome here! In what i have read i am having some of those symptoms! I dont know what to do! I asked my doctor what all the pressure/pain was in my carotid artery in my neck and going up into my head was, and all he could say was he didnt know! And he walked out of the room. All he did was make some changes with my settings, because i was going out of rythem constantly! Still dont feel well! Can anyone help with some advice. Or inform me on pacemaker syndrome.
Thank you
April


3 Comments

Pacemaker Syndrome

by Bub - 2007-10-19 11:10:59

Hi April,

The following on pacemaker syndrome may help. From what you describe as symptoms --- well let's just say your symptoms fit some of the ones described in this article.

Pacemaker Syndrome

What is pacemaker syndrome?

Rarely, pacemakers can make some symptoms better but cause new symptoms. People with pacemakers may no longer have fainting spells, but they feel tired and listless. They notice pounding in the neck or chest, and generally don't feel as good during daily activities as they once did. This is called pacemaker syndrome.

Why does it occur?

The heart's pumping action depends on a number of things. It needs good inflow from the veins, a proper rate of beating, and heart muscle that squeezes well. The heart also needs to squeeze in a proper pattern. Each heartbeat starts with squeezing (contraction) of the upper heart chambers (atria). A short pause is then followed by contraction of the lower heart chambers (ventricles). If the pattern is changed even slightly, the heart doesn't pump efficiently.

Artificial pacemakers may help the ventricles, the atria, or both to contract (squeeze) at the proper time. They are designed to follow the heart's normal rhythm. They can be fine-tuned to maintain the normal pattern of the heartbeat.

However, in some people a pacemaker impulse may travel backward. This may cause the atria to contract at the wrong time. A pacemaker that fires at a constant rate may be just fine for someone at rest but may not work well for exercise. Either of these situations may cause symptoms.

How is it diagnosed?

People with pacemakers help make the diagnosis by telling their doctor about their symptoms. An electrocardiogram (EKG or ECG) or a 24-hour tape recording of the heart's electrical activity may be needed to identify just what's happening. The doctor may find abnormal pulses in the veins of the neck during a physical exam.

How is it treated?

Pacemakers can be programmed to change their pattern. The doctor may change heart rates, strength of impulse, and the small built-in pauses that are part of heart contraction. Most of the symptoms can be made better by changing these settings. Several tries with different settings may be necessary. On rare occasions, the pacemaker may need to be replaced by one that can pace both the atria and ventricles, or by a pacemaker that can respond to exercise by increasing its beating rate.

With the right pacemaker and the right adjustments almost all pacemaker syndromes disappear.

pacemaker syndrome

by luckyloo - 2007-10-21 09:10:24

dear april,

i just posted on this a couple weeks ago. if you do a search here you can reaad about it.

it actually took 1 1/2 years and my getting a new EP to fix the problem. i had this terrible fullness in my face and neck...like i was standing on my head or someone was choking me. it got woirse when i layed down. i'd get these aweful headaches too. i couldn't exercise either. i felt like crap...fluish, tired all the time, out of breath sometimes just talking to people. any type of exertion would make me out of breath. i also had some chest pain too. my pacing percentages were going up also

i was checked for SVC syndrome with a venogram. that can give you the fuillness in your face and neck. it is caused by crowding of the vein from the leads...scar tissue building around the wire etc. that was negative so my old EP just stopped investigating my complaints.

my new EP fixed the problem in 5 minutes. apparently pacemaker syndrome is on the rise. our devices are getting much more advanced and they come with so many features. what fixed my pacemaker syndrome was...i was pacing unnecessarily in my ventricle. he made it so i would onlyt pace in my atrium and only if necessary in my ventricle. my AV delay was lengthened too. my other EP had it on too short so when i had a pause, the device would pace and then my own heart would beat after that, so it was like twice the ventricle work. he also lowered my pacing to only pace if i go below 30 instead of 50. he also turned off the "rate smoothing" feature. sometimes i have different benign arrhythmias that my old EP thought rate smoothing would help. my new EP checked me with a 72 hour holter to make sure i didn't need that function on...i don't.

i cannot tell you how much better i feel! i felt the results instantly!!! if your dr. can't help you or doesn't know much about PM syndrome have him call the device rep in to help him/her. or get a new EP knowledgable in this.

i was told the pressure feeling was caused by the ventricle and atrium fighting eachother which then causes the blood to "backflow" up into the atrium.

keep us posted on what you find out!

luckyloo

Pacemaker syndrome

by amstone - 2012-03-13 08:03:07

I just read your posting regarding pacemaker syndrome. I realize it has being 3-4 years ago. I am new to the forum and had a single lead pacemaker insert in December 2011. I, too, am having some problems with my pacing. I also have POTS. I went for my 2nd pacemaker check today and the technician said I had 3 episodes of pauses and yesterday's report wasn't much better. SAid there were spikes in my heart rate and I'm pacing at 75%. My EP says it's rare but I am having atrial fib. tendencies. The made an adjustment something to do with the smoothing feature. I do have good days and bad days, but I can feel the pacing and it makes me very shaky and sick feeling at times. Just wondering how you are coping after 3-4 year from your posting. Did they get you lined out?

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.