Chronotropic Incompetence: how are you managing it?

@johnwburns Very interesting, I'll look into that website.

So, what does this mean for you @johnwburns? Obviously, it is has a huge impact on your daily life, especially such an abrupt onset. What is the course of action? Can it be ameliorated?

Thanks for asking. It hasn't been 100% root caused yet. That will take a hotter and another stress test. Outside chance that its ischemic which would be easier to remedy. Per the cardiologist it can only be ameliorated via a pacemaker. The usual things can help slow deterioration, like weight loss and exercise. I am struggling with the notion of a pacemaker, more than I did with cancer, probably because the symptoms I have are sudden onset and have a clear impact, plain old worn out. Pacemaker implantation is routine these days but if there are complications, like infection, they need to go in. Like everything else at this stage, its a hangman's choice.

Here is a prognosis breakdown:

The thing that I was trying to bring out by posting this topic is that the onset of symptoms can be sudden and easily mistaken for other issues. Apparently the node wears but functions until it reaches a tipping point. The process is driven by the natural pacemaker tissue becoming fibrotic.

I went for the checkup expecting bad news about my aortic stenosis or aneurysm. Both are fine but my left ventricular diastolic function is significantly compromised, Mayo grade 2/4, and then there's this sick sinus deal. Goes to show, you won't hear the one that get's you. :). I had 2 echocardiograms in Portland at a major clinic and both missed the left ventricular issues. Mayo caught it. Why? Probably better equipment and a better doctor reading the results. Regional clinics? No thanks.

Jim

I should have added that one of the possible causes of chronotropic incompetence along with sick sinus syndrome is subclinical hypothyroidism. Thyroid disease, hypo or hyper, can mimic a lot of things and in this case, hypo should be excluded as part of the workup for bradycardia.

This is probably more technical than most people care for but better more detail than less is my perspective, rightly or wrongly.

Hello Mayo Connect. First time posting — Thank You for the wonderful 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

Hello @mayo33 and welcome to Mayo Connect~

I am so pleased to see all of the healthy lifestyle changes you have made in the recent past. You must be very pleased with your progress. How are you feeling now?

If you care to share more, how is your Sinus Node Dysfunction being treated? Are there specific meds that are helpful to you?

Oh no. It looks like my post got cut off. I’m a noob. Here is the full post:

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). 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 system 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?

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 he previous weeks I only felt the bradycardia as a result of exercise.

I am not on any meds for the sss. Should I be?

Thanks for the additional information, @mayo33. I'm not personally familiar with SSS, so I'm not sure about meds. However, I did find an explanation from Mayo's website regarding this disorder. Please read the following link below:

Here is a quote from the article listed above about the different types of SSS:

"Types of sick sinus syndrome and their causes include:

Sinoatrial block. Electrical signals move too slowly through the sinus node, causing an abnormally slow heart rate.

Sinus arrest. The sinus node activity pauses, causing skipped beats.

Bradycardia-tachycardia syndrome. The heart rate alternates between abnormally fast and slow rhythms, usually with a long pause (asystole) between heartbeats.

What makes the sinus node misfire? Diseases and conditions that cause scarring or damage to your heart's electrical system can be the reason. Scar tissue from a previous heart surgery also can be the cause, particularly in children. Rarely, the cause can be genetic.

Sick sinus syndrome can be unmasked by medications, such as calcium channel blockers or beta blockers used to treat high blood pressure, or by other conditions causing the heartbeat to be slower or faster than normal. In most cases, the sinus node doesn't work properly because of age-related wear and tear to the heart muscle.

Risk factors Sick sinus syndrome can occur at all ages, even infancy. Because it usually develops over many years, it's most common in people over age 65. In rare cases, sick sinus syndrome can be associated with certain conditions such as muscular dystrophy and other diseases that may affect the heart.

Complications When your heart's natural pacemaker isn't working properly, your heart can't perform as efficiently as it should. This can lead to:
Atrial fibrillation, a chaotic rhythm of the upper chambers of the heart, Heart failure, Stroke, Cardiac arrest."

@mayo33, This does appear to be a rare disorder and while the article does not mention meds, it does mention that a pacemaker is often used to correct the problem. Have any of your cardiologists mentioned a pacemaker as a possibility down the road?

I'm curious, you had a Stress Echo, what was your maximum heart rate during the test. Heart rate, from my reading yesterday, and some prior knowledge, is controlled by the Sympathetic Nervous System AND release of Catecholamines to increase the rate, and the Parasympathetic Nervous System (Vagus Nerve) to decrease the heart rate after a fight or flight situation. The Vagal influence on the heart can be profound. One site lists this:

Potential symptoms of damage to the vagus nerve include:

Difficulty speaking or loss of voice, a voice that is hoarse or wheezy, trouble drinking liquids, loss of the gag reflex, pain in the ear, unusual heart rate, abnormal blood pressure, decreased production of stomach acid, nausea or vomiting, abdominal bloating or pain.

Remember, but Potential Symptoms cause Heart Rate Issues and Pain in the Ear, so there's a possible tie, research on the Mayo Site for more.

Researching your issue, I found this on Scientific American

Can Eating a Sandwich Stop Your Heart?
In a word: Yes. The question is, why? Hint: nerve signals are blocked.

A woman with syncope caused by swallowing while eating a sandwich. They tested everything, looked for seizures, etc., but not until they gave her a Holter Monitor to wear at home did they discover the real reason. Swallowing stimulates the Vagus Nerve, it's fed back to the heart, and briefly interrupts her heart beat.

So, this might be a possibility, Vagus Nerve dysfunction, and a Holter Monitor might be a way for them to record what's going on. Just a thought, I'm not a professional, but I've been plagued with PVCs since I was 15, over 45 years ago, and I read a lot.

Hi @soliloquized

I started going down the same way you are thinking last night. My highest heart rate on the stress echo was around 100 - then they pulled me off the machine to ultrasound and all the techs freaked out like I was going to have an MCI right there. One cardiologist was convinced it was a block, until they did the angiogram and found no blockage.
Last night I found a condition called Roemheld Syndrome. This is pretty obscure, but my history is very consistent with the symptoms and consistent to what you describe above. About 2 months before I got tinnitus, I had a wheezing productive cough (I still have it). My pcp regards it as GERD acting up, but I’ve been on Prilosec for 20 years and never had it this bad. It is Like there is more pressure on my stomach. My wife was also in a bad accident causing 8-10 weeks of extreme stress for me around the same time also gained about ten pounds and stomach/chest felt tight/bloated. Then the tinnitus then the vertigo attack then the heart arythmia issues and bradycardia. The description of Roemheld Syndrome is stomach or GI pressure on the vagus nerve that then causes GERD, tinnitus, vertigo, bradycardia or tachycardia and other symptoms. Could be caused also by hiatal hernia.
I found this because I noticed a pattern in my heart rate yesterday where I get bad bradycardia after a meal, especially when wearing a tight belt or tight clothes. Today I had very small meals and I didn’t get the drop I got yesterday afterwards. I’m not sure if this is just my blood going to my gut after a meal (Postprandial Hyperemia) or something more like Roemheld. ??
I’m scheduled for a heart rate monitor next week, for two weeks. I should be able to test this hypothesis easy enough with different size meals and different/tighter clothes and see how it correlates on the monitor vs on my watch.