Dr. Visser, a Dutch cardiologist, has treated thousands of chronic fatigue syndrome (ME/CFS) patients over the years, and now focuses exclusively on them. In his next series of video’s from the Dutch ME/CFS Association he talks about some of the sometimes disturbing heart symptoms he finds in chronic fatigue syndrome.
Many symptoms are more painful, but few are as disturbing psychologically as having something possibly going wrong with your ticker. I’ve been to the doctor/emergency room twice over the past three decades checking on heart issues and now they’re back again, so I’m very interested in what Dr. Visser, a cardiologist, has to say.
He began with the problem of a faster than normal heartbeat at rest – something that’s been well documented in chronic fatigue syndrome. For myself, I notice sometimes when I lie down I can hear my heart pounding, which is a sound that is not all conducive to resting :).
Healthy peoples heartbeat speed at rest can range from 50 bpm (beats per minute) to 70/80 bpm but when you get above 100 bpm, you’re definitely in the pathologically abnormal range – and that’s what shows up in some people with chronic fatigue syndrome. What we have is a population that as a group has higher – and sometimes much higher – than normal heartbeat rates at rest.
His eyes widening a bit, Visser explained that high heart beat rate at rest occurs not only during the daytime but also when people with ME/CFS are really resting (or are supposed to be really resting) – i.e., when they’re dead asleep.
What’s happening? The heart rhythm is controlled by two cranial nerves, a stimulating nerve (nervus sympathicus) and an inhibitory nerve (nervus vagus). Both are firing simultaneously; when the nervus sympathicus or ‘stress nerve’ fires more frequently than the nervus vagus, your heart rate rises.
Two heart-related things appear to be going wrong in chronic fatigue syndrome; one, the ‘stress nerve’ is firing more quickly than it should be, and two, the vagus nerve is firing less quickly. Put those two problems together and you have a heart that doesn’t get the rest it should. Clearly, if the heart is not resting, the body’s not resting either.
That’s just the first reason your heart rate may not slow down to normal, though. It turns out that stress hormones in the blood (catecholamines) also regulate our heartbeats, and studies suggest some ME/CFS patients have higher levels of catecholamines in their blood.
That’s not all: A third, and perhaps the most interesting, potential cause is the low blood volume in ME/CFS patients. This is something Dr. Visser has documented in his own patients. Less blood means less blood flowing to the heart. If your heart isn’t as full of blood as it should be, it will compensate by beating faster in order to get more blood out. Your heart may be pumping faster simply because it’s trying to pump all the blood that your tissues require.
Last, your heart could be beating faster than normal at rest due to immune system activation.
Treating Increased Heart Rate
A trip to the doctor can determine if anemia, a hyperactive thyroid, or simple nervousness is causing your increased heart rate. If none of those is the cause, you can assume the increased heart rate you’re experiencing is a part of having chronic fatigue syndrome. In fact, telling yourself this problem is simply a part of having ME/CFS can be helpful. If your heartbeat is not too high or bothersome, this is what Dr. Visser recommends.
Dr. Visser on Heart Racing at Rest and Chronic Fatigue Syndrome (ME/CFS)
Beta-adrenergic blockers such as Metoprolol, calcium channel blockers like Verapamil, and the new drug Ivabradine can be helpful if your problem is more serious. But Dr. Visser cautions if you have low blood volume, and you take these drugs, you’ll actually diminish blood flows to your organs, muscles, and brain. If your heart rate is increased to compensate for the lowered amount of blood your heart is receiving, then lowering it will reduce the volume of blood it’s pumping out. If, on the other hand, your increased heart rate is driven by an over-active sympathetic nerve activity, then these drugs can work just fine.
- Dr. Visser didn’t mention ways to increase blood volume – you can find some here/See Dr. DeMeirleir on Low Blood Volume here.
Dr. Visser on Heart Arrythmias and Chronic Fatigue Syndrome (ME/CFS)
Cardiac arrhythmias are vastly more disturbing than increased heartbeat rates. In an arrhythmia your heart feels like it stops beating, holds, then releases, sometimes in a flurry of beats. You may also notice a kind of fluttering sensation in your chest. (The fluttery feeling is probably from “extra” heartbeats occurring rapidly one after the other.)
Arrhythmias result from an improper electrical activation of the heart, and because of that, electrocardiograms or ECGs are often used to diagnose them.
Dr. Visser went through several types of arrhythmias, and then addressed the big question:
“Do Arrhythmias Occur Frequently in ME/CFS?”
He noted that his patient population – a mostly younger one, you may remember from an earlier blog – often observes skipping beats, racing heartbeats, etc., and these arrhythmias are showing up on ECGs as well. In fact, Dr. Visser said that people with ME/CFS tend to have somewhat more arrhythmias than his cardiac patients!. Not everyone one has them. Some people have them and others don’t, and the same applies to healthy people. (In the first videos Visser emphasized he does not find heart damage in ME/CFS.)
A System on Alert
Visser noted that the hearts of both healthy people and people with ME/CFS tend to skip beats frequently. The difference, amazingly enough, is that healthy people apparently don’t feel their skipped beats, while people with ME/CFS do.
In my case, twice in the past year I’ve been, for some reason, very aware of my heart beat. That hasn’t happened, for decades, but all of a sudden, during a period when my health has actually been improving, my heart beat has become very evident to me. I can hear it skipping around and pounding away when I lie down. Sometimes it seems like it’s jiggling away like a bowl of jello. It’s aggravating and anxiety producing, and it’s associated with dizziness at times. Am I listening to my heart too much?
Dr. Visser on Heart Arrrhythmias in Chronic Fatigue Syndrome
I think something has altered physiologically, but Visser believes that in our quest to not overdo it – and become symptomatic – that ME/CFS patients closely watch their bodies, and because of that, we’re very attuned to their hearts perturbations. Without really being aware of it most of the time, I know that I tend to watch my body like a hawk.
Various things could cause this increased body attentiveness , the prime culprit probably being a sensory nervous system that’s run amok, and is pounding the brain with sensory data. Visser’s idea is similar to the theory that the interoceptive processes in the brain (centered in the insula) are, for whatever reason, interpreting the signals from the body as dangerous. Abnormal insula activity has been found in ME/CFS, fibromyalgia and other co-morbid disorders and one study has found evidence that increased awareness of the heartbeat is present in ME/CFS. We should take note, though, that the insula also regulates autonomic nervous system activity (see below).
People with ME/CFS also do have more arrthymias than normal, and next Visser suggests why this may be so in ME/CFS.
Visser believes the imbalance between the sympathetic nerve and the vagus nerve mentioned in a previous video is probably causing the increased number of arrhythmias he’s found in ME/CFS.
As with the other cardiac symptoms mentioned thus far, treatment options depend on how bad and bothersome the arrhythmias are. Really bothersome arrhythmias should be checked out using an ECG, but Dr. Visser said that if your heart is otherwise healthy, the arrhythmia itself would do little harm. The heart, in fact, can tolerate a large number of aberrant electrical signals – which is what arrhythmias are – without “being damaged by them in the least”. A simple reassurance that your ticker is not going downhill fast can be a major stress reliever.
Drugs (beta blockers, calcium channel blockers, and others) can treat really bothersome arrhythmias, but these drugs do cause side effects in some people.
Lastly, he said some (apparently rare) arrhythmias can be dangerous, but he didn’t give any sign that he typically sees them in his chronic fatigue syndrome patients.
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