Sick Sinus Syndrome

I have recently been diagnosed with asymptamatic SSS. My longest recorded pause was 2.6 seconds.

The doctor told me that if the pauses last longer than 5+ seconds he would recommend a PM. I was wondering what time period I might be looking at? I know my SSS is going to get worse and everybody is going to be different, but is it going to take months or years?

I've been keeping track of my pauses with a great new app I have and so far I haven't exceeded 2 seconds. But I want to stay 1 step ahead of the game and nip it in the bud. I don't want to wait until I pass out.


11 Comments

crystal ball

by Tracey_E - 2021-05-17 21:56:13

Got one? Because some people go years without progressing, with others it happens very quickly. There's really no way to tell but you have a great attitude (many will want to procrastinate) and the app is a terrific idea. All you can really do is keep an eye on it for now. 

SSS

by AgentX86 - 2021-05-17 23:04:23

I had several Holter monitor tests (about every six months).  My cardiologist told me that I'd had many pauses up to 3-seconds.  I went that way for a couple of years, then it got worse.  I'd been hospitalized for near-syncope but they couldn't find anything so sent me home with an event monitor.  On the third night I had a 6.5 second pause.  I got a call at 3:00AM from the monitoring company telling me to get to the ER now. I already had an appointment that morning with my EP so went and camped out in his office.

The bottom line is that it may be some time or not so much time.  Who knows? It will get worse, though.  That's the way these things work.

The 5-second dividing line is what my cardiologist told me too.

Be guided by your symptoms

by Gemita - 2021-05-18 03:27:01

Silverfox,

I would be guided by your symptoms alone, not by the length of a pause.  If you get increasingly fatigued, start having more dizziness or presyncope feelings, or symptoms like breathlessness, weakness, I would go back to your doctors and discuss the possibility of getting the pacemaker sooner rather than later. Your symptoms alone will tell you when it is time for a pacemaker and "asymptomatic" may become "symptomatic" quickly and you will know all about it.

I had to prove I was "symptomatic" by longer term event monitoring which  confirmed intermittent irregularity of my heart rhythm, pausing, slowing of pulse, as a direct cause for my worsening symptoms. I believe this is the best way of determining when you are getting closer to needing a pacemaker rather than relying on length of pause alone seen on an App.  In the meantime, I would also keep a diary note of any adverse symptoms when your App clearly records the pausing, as evidence of your condition worsening.

Each health authority in every country will have their own guidelines for the need to implant a pacemaker, but worsening symptoms alone can tip the balance in our favour.  It did in my case.  Because of the variable, intermittent nature of SSS, it may be difficult to correlate any symptoms with pausing but this is what you may need to do if you want to get a pacemaker sooner rather than later, to try to prevent a syncopal episode.  For example I was very sensitive to even short duration pauses and slowing of my heart rate.

It took my doctors many years to determine that my pausing, slowing pulse was causing extreme weakness, fatigue, breathlessness, pre and actual syncopal episodes.  I wouldn’t wish these symptoms on anyone.  Good luck

 

 

The stages of SSS

by IAN MC - 2021-05-18 05:56:18

Typically cardiac pauses associated with SSS will , over time, go through 3 stages :-

- very brief pauses with absolutely no symptoms

- slightly longer pauses acccompanied by the feeling that you're going to faint but you don't actually pass out. This is known as " Pre-Syncope" . It may be accompanied by palpitations, blurred vision, dizziness , you certainly would have a strong feeling that something bad is about to happen !

- thirdly , a cardiac pause which is long enough to cause " Syncope" i.e. you faint but you do regain consciousness

I went through the second stage  for about 3 yrs with the pre-syncope episodes slowly becoming more frequent.

Foolishly ( in retrospect ) I waited for stage 3 before having a pacemaker. I still shudder when I think of  the risks I exposed myself to ( and other people in some cases ) in the 3 yrs of warning symptoms.

I think you are taking a very sensible approach and there is no way I would have had a PM  at the pre-symptom stage but at the very first signs of pre-syncope I would be asking for  a pacemaker.

You may of course be lucky and your SSS may never worsen at all.

On the other hand , the very first time you experience pre-syncope the pause may be long enough to lead to a  faint ( syncope ).SSS doesn't follow a set of rules.

Best of luck !

Ian

Thank you

by Silverfox - 2021-05-18 07:58:15

Thank you for all your comments. They are extremely helpful and have given me a lot of things to contemplate.

SSS

by Loretta - 2021-05-18 12:26:52

SSS, 58yo

Reading the above posts ,I appeared to be in stage two with the " increasingly fatigued, start having more dizziness or presyncope feelings, or symptoms like breathlessness, weakness" which is what brought me to ER in the first place .  I was recovering from a mild case of covid a few weeks before this hit,so I thought I had a relapse. Not the case.

While being monitored ,on my way to being discharged, I had a 3.7 pause which I had no idea I had. I had to stay again with a hr down to 33 while sleeping. 

 My only choice was hr monitor for three months with no driving because of the above symptoms(I was told its the law,Reno Nevada?) or a PM implant the next day.  No driving is impossible ,so I opted for the PM.

If you have any symptoms as noted above I would call cardio back asap. Like stated above, symptoms can hit without warning . I had no idea what was going on and must have had it for  quite awhile before it started affecting me.  

There is a lot to consider. This site has been wonderfull for insight.

Take care,hope all works out well.

the stages of SSS

by AgentX86 - 2021-05-18 19:35:54

A pause of 2.6 seconds isn't really all that concerning.  A two second pause is just one skipped beat at 60bpm. 2.6 seconds is a skipped beat at 46bpm or two at 69bpm (unless I boluxed the arithmetic). Such skipped beats are pretty common, even in normal hearts.  As I said earlier, five seconds and above gets really worrying.  I think (I'm not a doctor) you're getting into the area where it has to be watched closely but it's no reason to panic.

It'll probably get worse (if it's SSS, it never gets better) and you may be in for a PM somewhere down the line.  I disagree with others, though.  This isn't something that you can wait for symptoms to appear.  Most often, these pauses start at night and get much worse at night before they even crop up during the daytime.  While you're sleeping your heart slows and makes pauses more likely.  I didn't have any symptoms until they got to the fiveish second mark because they always happened while I was sleeping.  My cardiologist was watching them with periodic Holter monitors, though. 

Again, I don't buy the "don't worry until you feel it" opinion.  First, if the first time you feel it is when you're at the top of a set of stairs, you could do some serious damage to yourself.  If it happened while behind the wheel, you could do serious damage to someone else.  Driving while in syncope isn't recommended.

Also, SCA is just a (very) long pause.  My brother, who was in perfect health, as far as anyone knew (swam two miles, three days a week) , died of SCA about nine years ago.  He never had any symptoms at all and was, the healthiest in the family.  He had no signs of heart disease, with none of the risk factors (except choosing the wrong parents).

This is something to be watched but at this point nothing to alter your life over.  With your attitude, you'll be fine.  Your cardiologist or EP will watch its progress, if it really is SSS, and decide when a PM is appropriate.  SSS is exactly what PMs are best at.

 

Night Time

by Silverfox - 2021-05-18 19:49:36

Funny but my heart seems to be in perfect sinus rhythm most of the night. Even when I get up for a bathroom break and go back to bed it still seems fine. It's when I get up in the morning that it starts missing beats. Even when I run it's missing beats. 

Because of my Polar heart monitor and the great EKG app I got, I am able to see exactly what my heart is doing. Kind of like wearing a Holter all the time. 

"Missing beats"

by AgentX86 - 2021-05-18 22:44:52

These "missing beats" may also be PVCs.  If so, they're not missing at all, rather an extra beat that interrupts the normal beat.  This "extra" beat is weak so it feels like it's been skipped.  PVCs often happen during exercise and particularly if you're dehydrated at all.  It's also very common for PVCs to happen at rest, when the heart is slow.  Different people, different symptoms.

Pauses tend to happen when the heart is at rest.  When did your EP tell you that the pauses were happening?

 

syncope

by Gemita - 2021-05-19 06:23:07

Silverfox, there are many possible causes for syncope and I have several, some of which are clearly not helped by a pacemaker and my doctors wanted to make sure that I would benefit from a pacemaker before rushing in. 

My doctors are also very conservative and only treat a condition when the patient shows clear signs of troublesome symptoms, since treatment say with medication, ablation, pacemaker do not come totally without risk either.  Without symptoms (without a clear indication of the need to treat), my doctors tend to leave well alone.  That is what I meant by “be guided by your symptoms” rather than by the length of a pause.  

In any event, I believe you would definitely start to notice when any pausing got longer by your symptoms alone, although as others have stated, sometimes we get no warning of impending doom, but that is the same for many health conditions, not just for SSS.  The body is incredibly good at protecting us and compensating until it can no longer do so.

In case anyone wants to read about "pauses" I attach a link

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5642031/

10

by Silverfox - 2021-05-19 08:09:55

My Holter test confirmed my SSS diagnosis. The longest pause happened about an hour after I woke up.

As I mentioned, I have an app that provides me with amazing detail on my heart rate and intervals between beats. I use a Polar H10 monitor with the app. The H10 is considered the best monitor available.

The feedback gives me a great idea of what my heart is doing at rest and during exercise. It also gives me the length of the pauses. 

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