Sick Sinus Syndrome

Hi, I am new, and while I do not have a pacemaker, I have had sick sinus syndrome for nearly 6 years. Everything looks great with testing and EF, the only new finding was a 3.7 second pause in the middle of the night once during the 14 day monitor. EP says no pacemaker yet, as my average heart rate is 60 and i can increase heart rate with exertion to 85 to 90 percent. I am 55 and had an asd closed 6 years ago with a Maze ablation, which could have caused the sick sinus syndrome.  I have no symptoms, a few pvcs, and occaisional SVT. I would like to put off getting a pacemaker as long as I can. What was the tipping point where your EP said now is the time?  Thanks! 


4 Comments

SSS (Sick Sinus Syndrome)

by Gemita - 2020-07-22 13:25:53

Firstly welcome,  

I know this may seem like an odd response but my EP in the end was very much guided by me as to when the time was right to have a pacemaker!    When my heart rate started crashing to below 30 bpm and my pauses were lengthening (mainly during the night) and I started having faints during the day, I knew it was well time to consider doing something.   But I shouldn't have had to wait so long for treatment.

The initial delay in my diagnosis (tachy/brady syndrome - a symptom of SSS), was because short term monitoring often failed to pick up my problems.  With longer term monitoring (Reveal Linq implant), my doctors were clearly able to see my difficulties and give me a firm diagnosis and recommendations for treatment. 

So my answer would be, when you start feeling poorly from a falling heart rate, or from long pauses, or from breathlessness, fatigue, maybe even pre-syncopal spells, you will know the time is right.  Don't wait for the EP to tell you, you tell the EP when you need help (!) You know your symptoms best and what you can and cannot tolerate.

In the meantime, live your life and be happy

SSS

by IAN MC - 2020-07-22 14:09:53

I have had Sick Sinus Syndrome for at least 11 years and have had a pacemaker for the last 10.   I agree with Gemita that the pacemaker-decision is usually driven by symptoms rather than EP advice.

SSS unfortunately tends to worsen with time in most people , leading to light-headedness and eventually fainting. You may be one of the lucky ones where it doesn't progress.

In my case , I lived with the feeling that I was going to faint for a year or so until it did eventually happen. I am a keen runnner and collapsed at the end of a 10 mile run. Fortunately , fellow running friends caught me before I hit the ground .  Next stage was a ride in  an  ambulance, complete with blue flashing lights and a pacemaker was fitted a few hours later.

I often wonder what the outcome would have been if I had fainted behind the wheel of a car !!

You mention that your heart-rate increases with exercise ... that is another thing to keep your eye on as SSS is often accompanied by " Chronotropic Incompetence " where you find yourself getting breathless after minimal exercise.

You say your "average" heart-rate is 60, I assume you mean your average RESTING heart-rate.... but averages are fairly meaningless . It is how low your resting HR falls that matters. This is what leads to a pacemaker.

If you ever do need a pacemaker, it really is an easy fix for SSS. and I have lived a pretty normal life with my PM friend.

Ian

 

SSS

by AgentX86 - 2020-07-22 21:59:05

Your doctor is right.  SSS generally gets worse over time but a 3.7s pause isn't at that point yet.  My cardiologist wasn't worried at anything under 5s.  My EP said nothing about it but, as expected, it did get worse and I had a near syncope event.  I was hospitalized for a couple of days.  During that time, I'd had a 5s pause, that the nurses missed (thought I was sleeping on the leads, or something).  They sent me home with an event monitor and called me immediately after I had an 8s asystole.  That was a Friday and I had my PM the following Monday (and an AV ablation).

Sick Sinus Syndrome

by Partyproncess - 2020-07-25 14:04:58

Thanks everyone for your very thoughtful responses. You all have such amazing stories. They really made me feel better.  It's nice to know this site and kind people like you exist. 

Overall, I am able to work as a teacher (many hours a day!) I walk (no running, bad knees) and ride my bike. I usually ride about 10 miles 3-4 times each week. I also walk daily. No dizziness or fainting, so maybe I am lucky and the progession will be slow. However, the pauses lead me to believe that things are progressing. Over the last four years my resting heart rate has bounced around from 45-61 back and forth. Usually the lower numbers are when I am more agressive in my workout schedule and the higher number is during the school year when I don't work out as often, but also I never just sit around at school, so maybe that factors into the higher number. Who knows, but for now I feel good and will take Gemita's advice and live my life and be happy! 

Hope everyone stays well! 

 

You know you're wired when...

Born to be Wired is your theme song.

Member Quotes

I've never had a problem with my model.