SSS caused by other disorders

Is it foolish of me to want to know what caused my SSS? I know that I should be happy that the pacemaker is there to keep my heart rate within a safe range, but can't help but feel like there is some kind of underlying condition causing it. I have had somewhat strange medical occurrences since childhood, and keep wondering if it all ties together somehow.


14 Comments

Causes of SSS (Sick Sinus Syndrome)

by Gemita - 2021-06-27 05:26:39

MAE11,

No it is perfectly normal to keep asking why.  We wouldn’t be human if we didn’t.  This is something that we all do initially until one day we realise that there is sometimes no simple answer, or there may be several reasons contributing to the need for a pacemaker and searching for the actual cause may be futile, leading to anxiety and other health conditions.  Sometimes acceptance is the only treatment that can bring us some relief (and of course our pacemakers!), but initially we all need to go through a period of asking “why”.

I can look back and see illnesses like a serious infection (both viral and bacterial), cancer, inflammatory disease and stress events like a bereavement or medical procedure that might have triggered my initial electrical disturbances, but I cannot say with absolute certainty what caused it and nor can my doctors, despite all my initial investigations.  Sometimes SSS (Sick Sinus Syndrome) starts for no apparent reason, even the ageing process can cause it and we cannot prevent this, can we?  Or we might be young, healthy and fit when we develop SSS.  Of course some obvious treatable causes should be ruled out first before you go down the pacemaker route, but I am sure your doctors would have done this.  I recall reading from your previous post that your heart pausing episodes were dangerously long, so whatever the cause, the pacemaker is the best fix to keep you safe.

SSS is an electrical disturbance in our heart’s natural pacemaker (the sinus node, located in our right upper heart chamber, called the right atrium)  This electrical disturbance causes it to malfunction until it is no longer able to generate normal heartbeats at a normal heart rate.  The sinus node can also become damaged by scar tissue (which can form with an arrhythmia, inflammatory condition, or other health condition).

I developed SSS many years ago when my heart started racing, then slowing for no apparent reason.  Many rhythm disorders were seen on my heart investigations, but no structural heart disease was found to have caused this problem which was baffling.  I was diagnosed with tachy brady syndrome (part of SSS) and advised to get a pacemaker especially when they detected long pausing, slow and fast heart rhythms sometimes leading to syncope.  My rhythm disturbances caused breathlessness and chest discomfort. 

It is important that our doctors initially check for any obvious signs of a cause and treat these first where possible.  If the problem still exists once all causes have been ruled out or treated, it may be time to correct the problem with a pacemaker and then to try to move on for our own peace of mind.  You are not alone on your pacemaker journey.  We are all here to try to support you whenever you need help.  I wish you a safe and happy journey ahead

Thank you Gemita!

by Mae11 - 2021-06-27 15:09:27

Thank you so much Gemita for your kind and very knowledgable words!

I had an array of bloodwork done prior, including CBC, CMP, thyroid panel, and magnesium. A few of the results were slightly askew, which I think keeps the questions coming. I also had an echo, which showed no structural abnormalities.

I am young, active, and fit. I have three beautiful young kids, and feel there has been such a change in the kind of mother I was, to what I am now. I felt like I was in the prime of my life, then BAM! I have felt like an 80 year old since April. Horrible fatigue, weakness, dizziness that is nearly constant some days. I have also had tingling in my extremities and strange splotchy skin.

They also found a spot in my thalamus, indicative of a lacunar infarct. I have had strange clotting tendencies in the past, so I'm not sure if those tie together. 

I was diagnosed with RSD as a child, which is a form of autonomic dysfunction, and had to have some form of spinal blocks.

I have also always passed out with any form of illness/fever.

Maybe it is like I have always said, and I am just medically weird. But some part of me thinks that it all ties together in some strange way.

Thanks again for your thoughts on this! I keep telling myself one day at a time.

 

Reflex Sympathetic Dystrophy

by Gemita - 2021-06-27 16:12:20

Mae11, RSD - Reflex Sympathetic Dystrophy?  I know it well.  I was diagnosed with this disorder in 2009 following a nasty fall and wrist fracture, right arm.  My nervous system went into overdrive attacking my right hand, wrist, shoulder and was spreading fast.  My entire hand and arm was red, inflamed and incredibly painful (burning) for months.  I couldn’t understand what was happening.  I also received a nerve block and was put on Pregabalin (Lyrica) which worked its magic.  

I had some pretty intense hand therapy but didn’t recover the full range of movement and cannot bend all my fingers fully, although I am using the hand well now, but for any sewing, playing the piano, it can be disabling.  Whenever I face a stressful event my nervous system works hard to attack me and I have to be very firm with myself not to get tense, stressed, to ignore mild pain and not to imagine the worse is happening and my RSD is spreading elsewhere.  It doesn’t always progress and it can be contained and go into remission for many years.

You have faced implant surgery and this is intense stress for us RSD sufferers.  I am not surprised you are fatigued, weak, dizzy, have tingling and skin changes.  This could well be the RSD at work but I still come to the same conclusion, your heart needed a pacemaker, just like mine did and we had to go through this ordeal for our own well being and safety. I also note that you have a lead problem which could also be responsible for some of your symptoms.

Yes one step at a time.  You will get better.  It is still early days with healing.  The worst thing we can do with RSD (now ?CRPS - Chronic Regional Pain Syndrome) is to focus on our problems.  This may just worsen our symptoms, our fears.  I am assuming you have no arrhythmias (like tachycardia, atrial flutter or atrial fibrillation) or even benign ectopics because these can cause symptoms of fatigue, weakness, dizziness and these can occur while we are healing.  My arrhythmias got worse immediately following the implant but then improved.  Now I am in a much better position with my pacemaker.  I don’t know how I managed without it.  

Take good care of yourself and of the children.  I am 72, hubby is 82.  We have two sons, six grandchildren and one beautiful great grandchild.  They are our joy when our spirits are down.

Wow!

by Mae11 - 2021-06-27 16:48:45

Wow! What a coincidence for us to have the same conditions! Have you ever thought that the ANS somehow caused the SSS? I have thought alot about this since the ANS controls heart rate, BP, etc.

As far as other arrhythmia, I have not been told anything other than by the original cardiologist before the EP. He saw a few PVCs within a short time while I was having an in office EKG.

This all started while doing my morning drop off duty at the school. I got very weak all of a sudden, dizzy, my vision went blurry, and my legs felt like jello. I thought for sure that I must be sick and about to have one of my fainting episodes. They took me inside and called the nurse down. She said that I was skipping every fourth to sixth beat consistently for about two minutes. The principle took me to the hospital, but by then my heart rate was back to normal.

After my first pause of 8 seconds, I was referred to the EP. At my appointment he said he was sent an incomplete report but was having it sent straight to his office then. He went over the report that night and saw several pauses, the longest being 15 seconds. Prior to the pause, it was about 130.He also said that my BPM was dropping into the 30s at times. I was baffled by this as I have always had a somewhat high HR, even at rest.

I'm not too thrilled with my EP, though he is supposed to be one of the better ones in my area. I was given very little information prior to my implant, not even a diagnosis.That is partially my fault I suppose, as I was in shock and didn't ask many questions. I had a doctor knows best mentality, and only after having time for it to sink in had a plethora of questions.

Sorry for all of that, but felt a more in depth description would help. Thank you so much again Gemita. It feels so good knowing that there are people like yourself and on this site that understand and are there for guidance!

 

Not partially your fault!

by Persephone - 2021-06-27 18:04:33

Keep asking questions of your medical team, Mae.  When you were experiencing brain fog from your condition, you could not have been expected to know what to ask.  I understand the doc-knows-best mentality that's been pounded into a lot of us... we have to advocate for ourselves and keep putting ourselves first.

Thank you Persephone

by Mae11 - 2021-06-27 18:19:42

I appreciate the understanding! I will be doing exactly that from now on. I want to have an understanding of what exactly my condition is, but have not really gotten alot of help with that from my EP.  He is a very intelligent man, and almost made me feel stupid the few questions I have asked. The most valuable information I have gotten has been from my own internet research and this site! I am only 30 years old and will have to deal with this the rest of my life, so after my lead revision another EP may be my best bet.

Yes what a coincidence !

by Gemita - 2021-06-27 18:41:38

Mae11, yes what were the chances of finding another RSD sufferer on the Pacemaker Club?  My body is so often doing strange things, like throwing sudden temperatue changes, blood pressure and heart rate changes, especially during swallowing.  I know there is far more going on than just my SSS but which came first?  I can believe my autonomic nervous system can trigger electrical disturbances and cause swings in blood pressure/heart rate too.  

Regarding the possibility of arrhythmias, it is sometimes a long and frustrating process to capture a significant event.  I had arrhythmia, blood pressure and heart rate monitoring regularly and yet they couldn’t catch my arrhythmia or syncope during the periods of monitoring.  I was eventually offered an implant monitor (Reveal Linq) which stayed in place 24/7 for 3+ years which steadily gave them the info they needed to diagnose SSS (tachy/brady syndrome) and confirm the intermittent syncope/pauses.  This quickly led to my dual chamber pacemaker.  I have never looked back and my symptoms and quality of life have improved immensely. 

Yes I also had difficulty with my first EP/Cardiologist who was rather unkind and didn’t seem to believe the full range of symptoms I could experience until some evidence emerged on my Reveal Linq implant monitor.  It wasn’t just the isolated symptom of a sudden heart rate or blood pressure drop which troubled me.  It was the sudden crashing followed by the sudden surging of both heart rate and blood pressure, combined with sudden symptoms of hypothermia, breathlessness,  weakness, overwhelming tiredness, flu like symptoms which were difficult to explain. 

Fortunately I was offered autonomic testing with a solid/liquid food challenge which finally confirmed the intermittent swallowing problems I experienced, triggering symptoms of arrhythmia/syncope.  I was so relieved to finally get confirmation of this problem.  Not always easy to control but my pacemaker is immensely helpful by keeping my heart rate steady and higher.  It is set at 70 bpm night and day.

As Persephone says, keep asking questions and I hope you find a good, sensitive doctor to work with.  It will make all the difference.  I am still trying to have a better patient/doctor relationship with my current EP/cardiologist, but as I understand my condition more, I am getting better at asking the appropriate questions and it makes a real difference.  Pacemakers and electrical disturbances are so complex and I sometimes feel our doctors aren’t prepared to even attempt to discuss our condition with us, assuming we would not understand or it would take too long for them to explain for instance, what was seen on our monitoring reports.  While you learn all about your SSS, you can educate your doctor about your condition and the difficulties you encounter on a daily basis. 

I will say goodnight to you and to Persephone now.  We have time to communicate again and you can always private message me if you need support.  Good luck for your lead relocation.

Doctor making you feel stupid

by AgentX86 - 2021-06-27 20:13:35

While this should never happen, we're all human.  It's possible that he thinks he's giving the information you need/want and it's just not getting communicated.  You really need to have two-way communication with your medical staff.  I've found that the more you understand about your condition, the more they're willing to talk to you about it.  I think there are two reasons for this.  First, most have no interest in learning and subscribe to your "doctor knows best" theory.  The doctor isn't about to force anything and is going to go along.  The second is that without some shared knowledge, communication is difficult.  If you understand your condidion and the hardware inside you, you negate both of these problems.  You show interest and can communicate. 

If you learn everything you need to know and still don't get satisfaction, fire your EP and move on.  He's not the one to keep you alive and well. 

"Informed consent" requires that you know what's happening and about to happen to you.  Understanding will relieve a hugh portion of the anxiety of all of this, as well.

I'm trying

by Mae11 - 2021-06-27 21:18:51

Thank you AgentX86! All of this makes sense, but still feel that at least a diagnosis should have been given. I'm trying my best to educate myself, but up until Monday of this week I didn't even have a name of the condition. I had however, done a good bit of research knowing that they placed a dual chamber. This all is new and a learning curve. I have only known my EP for about 3 weeks, and only met him once before surgery. I may grow to love him, who knows.

"I'm trying"

by AgentX86 - 2021-06-27 22:50:36

Yes, you obviously are.  You're here asking questions.  You've been reading about your condiiton on the Internet (just be careful of hypochondria).  All good.

The one suggest that may help you more than any other:  Get a copy of all documentation from your visits and particularly your pacemaker settings from the device clinic.  You are entitled to all information.  There are manuals on the manufacturer's web site to help decode the settings and there are several here who can help.  Being in control will make your journey much less traumatic. Knowledge  is power.

My best advice, with which many don't agree, is look forward. "Where do I want to go and how do I get there."   How you got here really isn't important.

Here you are and there is nothing you can do about it.  There is something that you can do about tomorrow, however.

Thank you!

by Mae11 - 2021-06-27 23:18:33

I will definitely be asking for the reports. I go in for a lead revision this Tuesday because it was stimulating my diaphragm. They told me this was happening when the pacemaker was having to kick in, and I was feeling it quite a lot. When I went to the clinic, they turned my threshold (I'm assuming that is my minimum BPM?) down quite a bit so I'm not sure how much it is actually pacing at this point. This is my new norm, so I'm definitely ready to embrace it and move forward with life!

(Capture) threshold

by AgentX86 - 2021-06-28 00:50:49

"Capture threshold" is the minimum voltage where the pacemaker is able to get the heart to beat (technically, the opposite is true too - the setting where the pacemaker can sense the heart beat).  This is different from person to person and the particular lead placement.  The the pacemaker is programmed, or automatically adds a margin on top of this to make sure the heart "capture" is consistent. 

Since the pacemaker is also pacing your diaphragm, they've lowered the pacing voltage to prevent this pacing of the diaphragm.  Doing this also reduces the margin between the capture threshold and the voltage actually used.  My guess is that they're going to do with the lead revision is relocate the lead such that the threshold is lower and they can return the threshold, keeping this reduced voltage safely.  They may also move the lead such that it doesn't pace the diaphragm but the idea is the same.  They've lowered your capture margin and want to get it back.  This revision his good for you, too, since a higher capture voltage means a higher pacing voltage and reduced battery life.

These are more questions for your EP or someone on the staff.  The nurses or pacemaker techs should be able to explain these terms. 

Keep up the questions, though.  It is important that you're armed with the facts.  It's not as daunting of a task as you might think now.  You don't need to know everything about everything, just what's important for your situation.

Knowing enough

by Gotrhythm - 2021-06-28 13:30:16

I started to answer your post yesterday, then realised I didn't really have anything to add, and deleted it.

Give yourself a break. It's a steep learning curve and daunting, but according to a nurse I spoke with once, many people go around not knowing anything--not even whether they have a pacemaker or defibrillator/pacemaker. So if you know you have a dual chamber pacemaker, you are already ahead of many!

I sympathize with how difficult it can be to ask questions and get answers from cardiologists. AgentX86 is right. They shouldn't be that way--but too frequently they are. You can't assume they'll tell you what you need to know. You are going to need to learn how to ask questions, and that's hard because you don't know enough to know what you should ask.

Here's a lovely little cheat I found--Youtube! Type in pacemaker animation. Watch the little movie with voice-over again and again until it sinks in and you're comfortable. Then check out animations of the heart's electrical system. Learning the fundamentals of reading an EKG is good too. Once you have an overview of what the pacemaker is doing, everything will make more sense. You can find a video that will show just about any medical/anatomy question you can ask.

AgentX86 is right about something else too. The more you already understand, the better answers you will get when you ask questions, and frankly, the more respect you will get. More respect means when you tell them there's a problem, you'll be taken more seriously.

Another suggestion is to read every single Pacemaker Club post, whether it seems to pertain to you or not. It will give you context, a background, a scale the will make you a little more objective. You'll find out what people worry about needlessly, and what they don't worry about but should. And you'll begin understanding what you should be asking your doctor. For instance, until I came to TPC and read other people's posts, I knew nothing about settings. But being able to talk intelligently about settings to my cardiologist was the key to finally having a pacemaker that did more than keep me alive. It now gives me a life worth living.

And speaking of settings, the minimum BPM below which your pacemaker will not let your heart go, is usually called the base rate or sometimes resting rate.

Finally you can always come back here with your questions. AgentX is very knowledgeable about the technical side of pacemakers, any there's ususally someone with some experience in any area.

 

 

 

Careful of the rabbit hole!

by asully - 2021-07-01 22:21:15

Asking questions and wanting answers is normal.  However, I can tell you from my expierience sometimes the more you know the more you dig and learn and stress.  Learn what makes you comfortable and knowledgeable but don't stress.  Don't become a Pubmed nut like me!

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