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AHAMike, December 18,  2018  12:16am EST

Sinus Node Dysfunction 49yo

Hi everyone. First timer. I just joined the club. Thank you for the amazing forum.

I am late 40’s male moderately overweight and recently diagnosed with Sinus Node Dysfunction (SSS or Chronotropic Incompetence). I had no meaningful medical history until 3 months ago when I started experiencing  tinnitus in both ears. Then six weeks ago I had a vertigo attack (3 hours - horrific) and the next day the ENT diagnosed it as Menier’s Disease (some loss of hearing in left ear). After that diagnosis, I put myself on an aggressive program of daily exercise (running 1-3 miles a day) and diet (very low sodium less than 500mg, no extra sugars, no caffeine, alcohol was already out). A few weeks into the program I added supplements Vinpocetine and Gingko Biloba, as well as a multivitamin at the suggestion of support groups. 
Then two weeks ago, I went for my normal 3 mile run in the morning, but I couldn’t run. My heart rate couldn’t get above 130 without me feeling faint and my chest/shoulders tightening up. The next day I tried to run again and couldn’t go above 120. Within a four days I couldn’t get my heart rate above 100, so I went to see my doc who sent me to the ER and the Cardiologists. I got a full work-up. Stress test echo, blood work, MRI of head/neck/heart, and then an angiogram. I also had follow-ups with a heart rhythm specialist (cardiac electrophysiology). No blockages. At this point, their best guess is Sinus Node Dysfunction. I’m scheduled to go on a two week monitor starting next week to get more data. 
My Apple Watch has been fantastic at capturing my heart data and now even ECG data over the last six months. It is clear that my resting heart rate dropped 10-15 points when I added Vinpocetine and Gingko, but I have been off of them for 10 days and no rebound. My resting heart rate (calculated on the watch) is around 48-50. My Sinus rhythm looks normal at rest, but once I get my heart to around 85-90bpm it freaks out (my medical term) and the Apple Watch can no longer count beats. 
I trust that my cardiologists are on the right path with the monitor as the next step, but I also have a nagging feeling that there is something more systemic or root cause going on, since I got tinnitus, a vertigo attack, and the sinus dysfunction, all within a few months of each other. The head MRI ruled out something major in the brain. I am also going in for a sleep study to rule out sleep apnea (I do snore a lot). Also getting back to the dentist. Also considering an anti-viral, as that seems to help a lot of people with Tinnitus. My blood work is all clean, although there is some elevation of my ALT liver enzyme. I feel like I am in a race to find or rule out other possible underlying causes that might be correctable before too much damage is done or I concede to a pace maker. Does this group have any other suggestions on other potential causes or paths I should be exploring? Are there meds that help?

Additional note: today was worse. This afternoon after lunch I was sitting in a long meeting and started to feel unwell/faint. My Apple Watch then alerted me to a low heart rate for ten minutes (41bpm). I got up walked around and go some tea and felt better.  Then this evening after dinner I felt the same way. My hr was 42, but I could lay down and I felt better. In the previous weeks I only felt the bradycardia as a result of exercise. Now I’m getting very low HR at rest. 

2 Replies
  • AHAASAKatie
    AHAASAKatie, December 20,  2018  8:42am EST

    Good morning, I am so sorry that you are having to manage all of this. I can share the most recent science we have on treating Sinus Node issues with you  Societies Publish New Guidance for the Treatment of Slow, Irregular Heartbeats . Please let us know the results of your tests and how we can help support you through this time. Best Katie 

  • AHAMike
    AHAMike, January 19,  2019  2:07pm EST

    Katie, thank you for the SND guidance. That was incredibly helpful, very thorough, and very current. 

    After six weeks of investigation, ZioPatch monitoring, and a dozen other tests, I finally got a diagnosis. I have CPVT (Catecholaminergic polymorphic ventricular tachycardia). My cardiac MRI and the angiogram show a very healthy heart, no blockage, and nothing abnormal with the muscle. I have ventricular tachycardia with exercise or extertion and I also have a very low resting heart rate (low 40’s with dips to 30-35 and 5 second pauses at times). CPVT is also indicated by a mutation of the RYR2 gene and I have multiple mutations consistent with CPVT alleles in my DNA. I am getting ready for an ICD and also meds (beta blockers?), but I have been trying to find more good information on CPVT — very little information seems to exist. Does anyone know who in the country is the best expert on CPVT?

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