Emotionally Struggling with sick sinus syndrome

Hey team, 

As talked about in a prior post, I had a dual chamber pacemaker installed in July, I'm 44 and pretty healthy to say the least. 20 years in the army, runner, weight lifter, 6'5" 205. I started feeling my pauses when I was around 24 yuears old. It took cardiologists (several) years to figure it out...I was diagnosed with being dramatic, too much caffeine, too much alcohol (never drank either more than my peers), anxiety. Finally in 2019, a cardiologist got smart and installed a loop recorder, and the sinus node pauses were discovered, relief...but scary. 

Post install, I still feel pauses come on. However, now, unlike before...I don't feel diszzy, nor do I pass out. I stil feel uncomfortable, and post episode...I feel tired and emotionally drained, then I get on the web and google "sinus node pauses pacemaker". It's all doom and gloom. which, send me into depression. It basically says its only going to get worse, my pacemaker is just there to make my quality of life better, and not a cure and life expectancy is not long. 

Anyway, just ranting...if anyone wants to share their experience with their pacemaker via sinus node pauses and pacemaker issues, feel free to attempt to cheer me up. 

Hope you all are well. 

cheers, Michael 

instagram: Miichael_ramage


9 Comments

"life expectancy is not long"?

by AgentX86 - 2021-11-23 01:33:18

Really?  What makes you say that?  SSS certainly does get worse over time but that's why you have a pacemaker.  As your sinus node gets more wonky, your pacemaker just keeps on tickin'. With your pacemaker you can have a full life with a few very minor restrictions, countable on probably one hand, that few of us have any interest in anyway.

You want product reviews?  OK, I had eight-second asystoles (no electrical activity at all) with near syncope.  On Friday at 3:00AM my heart monitor picked up an 8-second asystole, I was woken up by a call form the monitoring service suggesting that I get to the ER, like soon. 

I had a PM Monday morning.  At the same time, my EP "fixed" my flutter problem and I was overnight in the hospital (big deal).  The following day I was back at work.  Fast forward almost four years, and I'm walking 10mi almost every day. 

Your life will be what you want to make out of it. You'll all but forget your pacemaker soon enough.

 

Listen to AgentX86!

by MinimeJer05 - 2021-11-23 09:39:06

Michael,

I'm sorry to hear that you are experiencing all of this. It's hard to remain positive and hopeful when you feel like everything but.

I would encourage you to listen to AgentX86 in the point that many people have lived with what you are living with and have been able to continue living a mostly normal life. The way I see it is that we can all embrace the crappy feelings and really sink into depression and sadness and just accept that death is around the corner or we can simply ignore it and keep pushing forward.

I know, easier said than done, but it really is the only way to move forward in life and to be able to keep on living. 

Whenever my symptoms get worse and I start feeling uncomfortable, I immediately think "this is it", "this is how I am going to go out" and then I am reminded (by members here and friends) that I am just experiencing discomfort and that it WILL pass and that people with the same issues as me (mechanical valve, PM implant, vision/motion issues) have gone on to live full and healthy lives.

There are so many members on here that are pushing 70-90 years old with multiple PM implants and heart conditions and yet they are on here telling us about their bike rides and marathon running -- focus on those people and try to remind yourself that someday that is going to be you.

I sincerely hope that things turn around and get better for you. Just remember, we aren't alone on here and this isn't what is going to define who you are!

Take care

Jer

Feelings vs facts

by Persephone - 2021-11-23 14:10:06

Hi Hyper - I could have written your post (albeit not as young nor ever in the kind of shape you're in :) almost 4 yrs ago when I found myself in the ER and then the next day found myself with a PM.  Anyway, I decided to seek counseling because I didn't understand wtf had just happened and didn't have much in the way of communication from the medical practice.  The counseling was so helpful - one of the primary takeaways was don't consult Dr. Google. I know that sounds like a very simple message, but combined with the overall experience had a significant impact for me. 

PacemakerClub is so much more helpful than any other sites I've seen out there.  Medical literature is available, too, if one wants to make the effort to interpret it. 

You knew that something wasn't right for quite a long time before receiving the help you needed, which adds to the weight of the matter.  I hope you consider at least a brief period of counseling to help you get on your path forward.  Wishing you the best.

Reply to all

by Hyperfocussed - 2021-11-23 17:04:23

Thank you guys so much for the responses. It helps to know I'm not alone. 
 

have any of you been through, or had any experiences that sound similar to mine episodes post PM install? 
 

Thank you guys! 

Similar stuff

by TLee - 2021-11-23 20:02:21

I was diagnosed with a-fib, had procedures to attempt to correct that (including cryoablation), ended up feeling worse. I began to experience presyncope episodes, the longest being 4 seconds, but they were happening pretty often. I could not drive or go anywhere alone, plus they were very scary! 

I was a little perturbed at getting the pacemaker, because I thought it would be just another shot-in-the-dark, not very effective procedure (Note: Some of the other procedures that I underwent work great for other people!). Sure enough, I felt pretty awful for the first couple of months & was not a happy camper. As I recovered from the procedure, & medications were added that I could not  have tolerated without the device, I began to feel a difference. Now I feel really good most of the time. I'm getting more exercise, and that helps me both physically & mentally. I can pretty much do whatever I want, whenever I want. 

However, I do sometimes get brief feelings of dizziness, light-headedness or shortness of breath similar to what you describe (not the same as nearly losing consciousness, thank goodness). I sort of look at it as a positive thing. I am more in touch with my body than I have ever been, thanks to all that I've experienced. It will tell me when I'm OK to continue an activity, when I should maybe take a breather, even remind me of somethng I want to ask my doctor about.

As I learn more about this experience, and a lot of it I've learned here, I am more able to figure out what may causing me discomfort, and see that it is usually somethng very easy to address. My blood pressure can drop due to taking a beta blocker, so I try to keep tabs on that. I am doing better about staying hydrated, which is very important. Even though I have fewer, shorter episodes of a-fib, I know that it happens on occasion. Inconvenient, yes, but I know it passes.

I am "lucky" enough to be dealing with pulmonary disease as well, and visit a forum dealing with that. Both have similar messages: Do all you can for yourself, including taking advantage of the near-miracles that medical science has to offer, and you can have a long, full life. I know about gloom & doom--I picked out the spot in the house where I wanted my hospital bed parked! But I am nearly 1 year with the pacemaker & not planning on slowing down any time soon! It's easy to say, Don't worry; but really, Don't worry! Best of luck

T-Lee

by Hyperfocussed - 2021-11-23 23:24:42

Thanks brother, love reading the positive stuff! Thanks for writing such a in-depth response. I really appreciate it friend. 

SSS / sinus bradycardia

by ar_vin - 2021-11-24 00:27:03

SSS Is probably the most trivial of conditions to "fix" with a pacemaker.

To the OP:

Please take some time to get yourself educated about your condition and your PM.

Ask questions of your EP, your device techs, etc, ask questions here, research the device implanted in you. You live in a world where all of this information is literally available at your fingertips.

And DON"T LISTEN TO ALL THE complicated stuff others here post! You say all you have is a diagnosis of SSS nothing more. Now you could keep imagining all the doom and gloom scenarios you want but that's not what afflicts you. You likely felt crappy for years because your SSS was not corrected - I have no idea why! SSS is trivially easy to find and to fix!

What you felt all those years is all in the past - your PM has fixed your SSS. Now go life your life and stop dwelling on the past!

Now if you have some other undiagnosed condition that's something for your EP to figure out. Ask him or her directly.

One other thing: too many young folks like you never have their PM settings adjusted to your lifestyle. Go research that and get it figured out. It's not uncommon for someone in your situation to develop chronotropic incompetence (your heart rate doesn't rise to support vigorous activities like running, bicycling etc) Again this is easy to identify and fix.

Posting a sob story is not going to help you - take responsibility for learning about your condition and figure how best to move forward.

You appear to be young and otherwise healthy - count your blessings!

Happy Thanksgiving!

 

 

Get the facts.

by Gotrhythm - 2021-11-24 11:23:22

Here's a fact you need to know. People with pacemakers have about the same life expectancy as people their age who don't have pacemakers. In my case that's around 10 years. In your case, that's 40 or more years. 

Here's another fact. Over time SSS doesn't get better, and does get worse. The good news is, the pacemaker works exactly the same whether it paces 10% of the time or 100%, and there is no difference in how you feel. In other words, the SSS gets worse but you don't die of it.

I have SSS and before the pacemaker had 4-6 second pauses. Since the pacemaker I still have PVCs, and sometimes I have had so many PVCs in a row that they could make me feel bad. You are definitly not alone. And, the EP was able to make adjustments to my pacemaker so that I have fewer PVCs and feel better.

Who knows what's going on with you? How you feel is real, but you don't know what's causing it. There's a lot of good information on the internet and a lot of bad. The hardest thing is to figure out what applies to you. 

Talk to your cardiologist (ideally a cardiologist who is also an EP) about how you are feeling. We can make guesses about PVCs, but only your doctor can tell you exactly what's going on with you and figure out what to do.

 

 

Got rhythm

by Hyperfocussed - 2021-11-24 12:18:50

Thank you for the insight! 

I do get PVCs on occasion, and those are pretty easy to deal with, been getting them since I was 15 years old. I was also getting 4-6 second pauses as well, sometimes 8 seconds. With those longer pauses, I would fall out and wake up confused.

There was a moment right before a sinus node pause (pre pacer), I could feel the moment right before it was about to take place. When I felt that, I knew trouble was coming. Now, I stilll feel the symptoms coming along. However, I'm not passing out. I can feel my heart rhythm kick back in after my pause starts. I obviously can't feel my pacemaker work, but I feel the heart rhythm change for sure. That new sensation/ feeling is a bit foreign, but I'm getting used to it. 

Thank you so much for your note! 

-Michael 

You know you're wired when...

Your device acts like a police scanner.

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