Update - Sorta..

Hello,

I hope this message finds everyone well. I had written a post in the Coping section on June 16, 2023. It was called vasovagal syncope, and pacemaker.

 Just to recap it, I went to a second opinion in June 2023 because my first cardiologist in May 2023 said I needed a pacemaker. The second opinion agreed with him that I also need a pacemaker but between the two, I still felt very much in the dark. All I knew was that I had vasovagal syncope and that when I experienced my episode while on the heart monitor, I had a heart pause. (Turns out I had two back to back that was 10 seconds long. 6.1 seconds and 3.1 separated by one heart beat)
 

Some background. In America, our wonderful healthcare system requires that we have something called a co-pay that we have to do for every doctors visits depending on what type of health insurance you have. My prior health insurance (because I just switched jobs and now have much better insurance for all this) I had a co-pay for the second opinion. Upon paying for this co-pay online I saw notes for the visit of the second opinion. I reviewed the notes and was left very confused, because none of what the doctor wrote in the notes were told to me. 

So, on October 5 I had to follow up with him and I brought up what I saw and questions that I had. I had six questions and I was only able to ask three because he was not very interested in my questions. but it was finally confirmed to me that I have been diagnosed with a complete heart block, sick sinus syndrome, and vasovagal syncope. The entire visit (15 minutes) He was much more interested in telling me about a leadless pacemaker, which I looked up after my first visit with him, and it contains nickel in it, which I have a surface base allergy for. So, he has referred me to an allergist to see if it is a complete allergy inside and out, and if not, will want to go forward with the leadless pacemaker, as it is much lower maintenance, then a lead pacemaker. 
 

I just wanted to post again because there were some people who were so nice and so informative to me who had commented and even private messaged me. And honestly, I still feel very apprehensive about this entire thing. I don't know if it's based upon the doctors and their terrible bedside manner or if I just can't wrap my head about the diagnosis and the fact that I need a pacemaker at my age as stupid as that sounds.

Thanks again for taking the time to read this! 😊

EDIT - Anyone with a leadless peacemaker or share any of my diagnoses and are willing to share their stories,I would greatly appreciate it!

6 Comments

heart block

by akaDM - 2023-10-07 20:01:42

"it was finally confirmed to me that I have been diagnosed with a complete heart block, sick sinus syndrome, and vasovagal syncope"

You're unusually unlucky to have been diagnosed with all three. What's your typical pulse? A complete heart block usually goes with bradycardia and is typically regarded as a medical emergency - and they don't seem to be doing that. Second degree block not so much.

Helpful?

by piglet22 - 2023-10-08 08:18:52

It doesn't sound as though whoever you saw is much interested in sympathetically explaining things to you.

Here's a link that explains some of it, particularly the difference between SSS and CHB

https://www.hopkinsmedicine.org/health/conditions-and-diseases/bradycardia

Vasovagal syncope is a faint or loss of consciousness due to neurological or cardiac problems.

Here's a long link to that

https://www.mayoclinic.org/diseases-conditions/vasovagal-syncope/symptoms-causes/syc-20350527#:~:text=Vasovagal%20syncope%20(vay%2Dzoh%2D,blood%20pressure%20to%20drop%20suddenly.

VVS is basically a vague term for an event before it gets more detailed investigation.

Reply to akaDM & Piglet22

by Millie1065 - 2023-10-08 11:55:21

AkaDM - I'm unlucky person. 😅 I usually track my bpm via my Apple Watch which has alerted me via sleep of low heart rates. But besides that, I don't have an accurate pulse. I just checked my watch data for 9/8 to 10/8 and it ranged from 40-178. (178 probably while on my peloton) Both cardiologists wanted to operate on me ASAP, first wanted the standard pace marker. Second, wants the leadless. It seems to me that the course of events are my triggers activate the VVS which triggers the everything else. This is all information based on my visits and visit notes.

 

Piglet22 - Thank you for the links! I really appreciate being provided with additional information. The cardiologist said my VVS is cardiac. He has not explained the SSS but it's on my chart. He has verbalized that I have a CHB. And I agree. They are not very interested in explaining anything to me but incredibly interested in implanting a pacemaker. I highly recognize that if I didn't push back, I'd have one implanted by now. Which could be a good or bad thing. 

complete heart block

by akaDM - 2023-10-08 14:17:18

If you have complete heart block you are very unlikely to be able to achieve a pulse of 178bpm

I'd suggest that you do regular manual checks of your pulse. Manual because watches etc are often inaccurate

Millie

by piglet22 - 2023-10-09 06:13:25

Glad the links were helpful.

If you are being offered a pacemaker, then it's reasonable to assume that you need one or might need one in the future. CHB can be debilitating without and VVS is not just a nuisance but dangerous.

Don't worry about the age thing. People get problems from before they are born.

I agree with akaDM about measurements. I think DIY measurements are essential, but need to be right.

By all means use the watch as a guide but don't rely on it. Your GP or cardiologist wouldn't use one in the clinic, I hope.

For what it's worth and if I had to choose just one bit of kit, it would be a good quality blood pressure monitor. Apart from the blood pressure which is always useful, I find the pulse rate is more accurate that say an oximeter and mine, an old Omron M10-IT, is very good at picking up arrythmias.

@akaDM

I hit over 200-BPM in June with CHB and pacemaker just after waking up. That was an A&E job.

Piglet22

by Millie1065 - 2023-10-09 19:18:53

Piglet22 - I agree that a pacemaker is the route for me. It has become increasingly more difficult to track all my triggers to avoid fainting. And I am sure by years end, I will be the proud owner of one. 😊 I have two blood pressure cuffs that I purchased after my hospitalization from the episode recorded on the holster monitor. I should use more to keep track of my bpm. Thank you for that advice. I really appreciate it! And yeah. During workouts, I have hit over 200. The thing is that it will rapidly drop once I'm done and I've experienced symptoms and/or have fainted from it. So I try to slow my breathing and lay down afterwards. It works wonders for me..for now.

You know you're wired when...

You can finally prove that you have a heart.

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