Living with SSS

SSS+CI => suitable PM with RR, tuned for me

by crustyg - 2024-11-05 18:21:39

Short answer is 'No, I don't have episodes'.  Used to be that one flight of domestic stairs and I was hanging onto the bannister at the top to avoid fainting and falling back down the stairs.

At implantation 5.5yrs ago, resting HR was 42BPM, 9months later I charmed my EP-tech into turning my device off for a cervical spine MRI, resting HR 28BPM.  100% paced and no useful SA-node activity at all.  I run (when R hip permits), swim (usually 2-3km per week) and use a road cycle to go up mountains (1500m last Sat in about 2.5hrs), and I am grateful for a helpful and supportive EP-team, medical and technical, and BostonSci reps.  I ski too - more enthusiastic than skillful.  Yoga+Pilates, Bodybalance and Bodypump.  Life's for living.

Swimming is the biggest challenge, but it's better than it was.

The key to an active life with SSS+CI and a PM is to get your device adjusted for your preferred activities.

Hope that helps.

Living with Sick Sinus Syndrome (SSS)

by Gemita - 2024-11-05 18:42:43

Hello Queen, what a great question for Election night.  Yes as a Sick Sinus Syndrome patient, I still have symptoms with a pacemaker.  I have tachycardia/bradycardia syndrome (which affects many of us with sinus node problems).   We need to remember that while the pacemaker can treat the bradycardia part of SSS, it cannot stop the tachycardia part from occurring.

Even with my pacemaker, I still have to take a rate control medication to control the fast heart rates that I sometimes still experience. 

My symptoms from a fast arrhythmia may include breathlessness, some chest pain, some dizzy spells, tiredness and uncomfortable heart palpitations.

Of course those members who only have bradycardia will be fixed with a pacemaker because a pacemaker can treat a slow heart rate, but clearly not a fast one.  Overall though I am in a much better place with my pacemaker.  I used to suffer from syncope and long pauses as well as a low heart rate.  Today my heart rate is mostly steady.

What about you Queen.  Has your SSS been fixed, or do you suffer from both bradycardia and tachycardia symptoms too?

Episodes

by Gotrhythm - 2024-11-06 13:47:22

Mot sure what you mean by "episodes."

The diagnosis of SSS doesn't really describe what the heart might or might not be doing. It just says there's something wrong with the part of your heart, the sinus node, that initiates a heartbeat.

There are problems like slow heartbeat (bradycardia) or long pauses that a pacemaker will definitely relieve. Once your pacemaker settings have been adjusted to your needs, you shouldn't experience them at all. Other problems, like PVCs, or tachycardia--which can produce unpleasant sensations--the pacemaker can't make go away. If you had them before the pacemaker, you'll likely still experience them after.

I have SSS. I had bradycardia, which made climbing stairs difficult, and I was so tired all the time. I had pauses, which would make me feel suddenly weak, as if I was about to pass out. After the pacemaker, climbing stairs was a piece of cake and I had energy to burn. No more weak spells.

But I had PVCs before, and I still have them occasionally. I also have PVT--a kind of tachycardia.

As you can see there's no easy, yes-no answer to your question. The question of symptoms is equally difficult. The fact is that many people will feel one thing, some people will feel something else. You can't diagnose a heart rhythm problem by symptoms alone.

Questions

by piglet22 - 2024-11-06 14:44:14

Hello

Early days yet. It would help if you filled in a bit more information like type and manufacturer of your device. How many leads? It helps where other users might have the same device and number of leads gives an idea of what's going on.

You might have been given an ID card on discharge for your device and that will contain useful information. Pacemaker functions are sometimes coded as in DDDR (Dual chamber pacing with rate response).

In direct answer to your question, yes you can have symptoms associated with rhythm problems even with a pacemaker. Conditions are complex and can change over time. The device has a wide range of settings that can accommodate changes, but some cannot.

Medication can help, but sometimes additional surgery is needed.

On the whole, quality of life is far better with a device than without, but don't be surprised if things change.

As you say, get on with life.