by Carolyn Thomas ♥ @HeartSisters
Heart disease is a strange animal indeed. Our very first symptoms can range from mild shortness of breath on exertion to sudden death – and almost every possible symptom in between. My own were those of the textbook Hollywood Heart Attack (crushing central chest pain, nausea, sweating, and pain down my left arm) – yet I was sent home by Emergency Department staff with a misdiagnosis of indigestion – feeling very, very embarrassed for having made such a fuss over nothing. It took two weeks to be finally correctly diagnosed with myocardial infarction (heart attack) caused by a 95% blockage of my Left Anterior Descending Coronary artery. And it took several more months – and another trip back to hospital – to figure out what was causing ongoing distressing symptoms that were ultimately diagnosed as Inoperable Coronary Microvascular Disease (MVD) or dysfunction of the smaller coronary arteries.
But MVD is very tricky to diagnose because most standard coronary artery disease diagnostic tests – the kind that work so well at identifying big fat blockages in our larger arteries – may not be capable of catching it.
The characteristics of MVD include:
- A build-up of plaque that spreads evenly throughout the walls of the small arteries. So while there may be no obvious blockages, blood flow to the heart is still reduced. (MVD is also called Non-Obstructive Coronary Artery Disease).
- Vessels that don’t expand or dilate properly during physical or emotional stress.
- Vessels that spasm (contract) abnormally.
Treatment goals for MVD are three-fold: stop it from getting worse, improve quality of life by relieving symptoms, and prevent a heart attack.
Standard invasive treatments for coronary heart disease – like angioplasty, stenting and bypass surgery – are not used to treat coronary MVD. Instead, treatment focuses on reducing risk through managing underlying conditions.
Unlike coronary artery disease in which angina symptoms are often brought on during exertion, symptoms of MVD are often first noticed during routine daily activities and times of mental stress.
A questionnaire called the Duke Activity Status Index may be useful. Developed by Duke University cardiologist Dr. Mark A. Hlatky (and published in the American Journal of Cardiology), this questionnaire can measure our functional capacity by correlating simple daily activities with peak oxygen uptake required to complete these activities. It offers information about how well blood is flowing through our coronary arteries, and also helps doctors select appropriate next steps.
Duke Activity Status Index
|Can you take care of yourself (eating, dressing, bathing, etc.)?||0.8|
|Can you walk around your house?||0.5|
|Can you walk a block or two on level ground?||0.8|
|Can you climb a flight of stairs or walk up a hill?||1.6|
|Can you run a short distance?||2.3|
|Can you do light work around the house (washing dishes, etc.)?||0.8|
|Can you do moderate work around the house (sweeping, carrying groceries, etc.)?||1.0|
|Can you do heavy work around the house (scrubbing floors, moving heavy furniture, etc.)?||2.3|
|Can you do yard work (raking leaves, pushing a mower, etc.)?||1.3|
|Can you have sexual relations?||1.5|
|Can you participate in moderate recreational activities (golf, dancing, etc.)?||1.7|
|Can you participate in strenuous sports (swimming, singles tennis, skiing, etc.)?||2.1|
|Circle the points for a question only if you can answer “Yes, with no difficulty”. Add up the circled points. The lower the score, the greater the risk. Total scores of 4.7 or below are considered higher risk.|
If I had been administered this Duke Activity Status Index at the beginning of my earliest symptoms, my score would have been relatively respectable at 6.8 points. In between debilitating bouts of these increasingly frightening cardiac symptoms, I spent two full weeks taking care of my daily needs (eating, dressing, bathing). I could walk around the house. I could cook meals and do the dishes afterwards. I could drive. I could go to work, attend meetings, make decisions, complete deadline projects, participate in important phone calls. I could even get on a plane and fly across the country to Ottawa for my mother’s 80th birthday weekend. By then, I was definitely having a profoundly more difficult time each passing day in keeping up the pretense that everything was “Fine, just fine!” while popping antacids for my “acid reflux” diagnosis, trying to cope with increasingly frequent attacks of cardiac symptoms, closer and closer together.
I was in fact experiencing what Irish researchers have described as the “slow onset myocardial infarction“, a reality that their studies identified in over 60% of heart attack survivors. Unlike that high-drama Hollywood Heart Attack we often imagine, people suffering slow-onset symptoms can wait dangerously longer than they should (believing symptoms to be “nothing serious” because they don’t match their expectations of what a “real” heart attack looks like). In fast-onset heart attacks, however, patients do seek emergency help faster because severe symptoms convince them that “this IS serious!”
But after I somehow survived that cross-country return flight home to the West Coast from Ottawa and returned once again to that Emergency Department, my Activity Status score would have been a dangerous 2.9 on the Duke scale.
A great deal remains to be learned about MVD, especially in women.
There are some basic strategies that you can use to help arrive at an accurate diagnosis and the best possible medical care.
For example, because the Duke Scale looks at physical tasks only instead of emotional stressors, it can miss the considerable link between psychosocial triggers that can make MVD symptoms far worse.
Cardiologist Dr. Puja K. Mehta, director of the Non-Invasive Vascular Function Research Lab at the Barbra Streisand Women’s Heart Center in Los Angeles, explains:
“We know that women who have chest pain and reduced oxygen to the heart – in the absence of ‘male-pattern’ obstructive coronary artery disease – may experience microvascular dysfunction during times of emotional distress even though their heart rates stay relatively low.
“More specifically, we hypothesize that emotional stress may trigger microvascular dysfunction and lead to heart attacks and other cardiac problems in women.”
Listen to your body and believe in your instincts. If you feel strongly that something is wrong but your doctor can’t find a problem, get a second opinion. Find a specialist who is familiar with Coronary Microvascular Disease. Ask questions. If you don’t fully understand the answers, ask more questions until you do.
Meanwhile, here are some other diagnostic tests for identifying coronary microvascular disease according to the useful medical site, Second Opinion:
- Adenosine Coronary Flow Reserve and Acetylcholine Endothelial Function Test with Cardiac Magnetic Resonance Imaging (MRI)
This is a pharmacological stress test. During the two-step test, the drug adenosine, which causes the small vessels of the heart to dilate, is injected into one of the coronary arteries and the amount of blood flow is measured. Next, the drug acetylcholine, which causes dilation in the large arteries, is injected and the amount of blood flow is again measured. The superior resolution of magnetic resonance imaging is used to get images of the beating heart and to look at its structure and function. MRIs can show poor blood supply to the innermost areas of the heart and can detect changes in the small coronary blood vessels. If either test shows decreased blood flow to the heart muscle, a diagnosis of microvascular disease can be made.
- Dipyridamole Positron Emission Tomography (PET)
This cardiac PET scan also shows how much blood flow the heart receives at rest and under stress. During the first stage, fluorodeoxyglucose is administered while the patient is at rest. The images that are produced from this first PET scan are checked with a second PET scan after the patient is administered dipyridamole, a drug that produces an effect in the body similar to the effects of strenuous exercise.
Doppler Wire Coronary Angiogram
The most definitive test for microvascular disease is a special type of coronary angiogram used to measure coronary artery flow reserve or coronary reactivity. It involves threading an ultra-thin wire with blood-flow sensors at the tip deep into a coronary artery (called cardiac catheterization). Blood flow in the artery is then measured before and after injections of one or more medications to cause the microvessels to dilate. The smaller the change in pressure and flow, the stiffer the vessels. This test is done only at a small number of cardiac centres. Cardiac catheterization procedures are invasive and expensive, but the risks of doing them have to be weighed against the risks of not being accurately diagnosed.
Resources: Second Opinion, Coronary Microvascular Disease
- Misdiagnosed: women’s coronary microvascular and spasm pain
- Coronary Microvascular Disease: a “trash basket diagnosis”?
- My love-hate relationship with my little black box
- How does it really feel to have a heart attack? Women survivors tell their stories
- The new country called Heart Disease
- How women can have heart attacks without having any blocked arteries
- His and hers heart attacks
15 thoughts on “When routine tasks trigger heart symptoms”
I had the angiogram challenge with acetylcholine and adenosine. The adenosine caused no changes. The acetylcholine brought on chest pain and restricted blood flow. My cardio said I did not have coronary microvascular disease, but I had endothelial dysfunction in the main coronary arteries. Treatment with long and short term nitro, Ranexa, BP meds is the same as with MVD. Curious as you stated that a reaction to ‘either’ test indicates CMVD.
PS Like your story, this all began after a STEMI LAD and stenting.
Thank you for this awesome website. 💜
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Hi Stephanie – so glad you found my website. The acetylcholine challenge test you had is considered the gold standard for measuring endothelial function. That info in my post about this angio challenge comes directly from the excellent medical site Second Opinion from PBS and the University of Rochester Medical Center. As cardiologist Dr. Noel Bairey-Merz (who chairs the massive WISE study of women’s ischemic heart disease) says during the (highly recommended!) panel discussion video on this site: “Too many times this is dismissed as a nothing”. She also calls this “female pattern heart disease”. Best of luck to you…
Great video! Thank you for the link. I guess my question is still can one have endothelial dysfunctional of the main coronary arteries but normal function of the micro vessels? It is my understanding that the ED in my main coronary arteries is my source for the chest pain and that the adenosine showed my micros to be normal. I had really bad pain with the acetylcholine and no pain or response with the adenosine. Hence my cardio said yes to ED and no to CMVD. She is treating me with meds the same as if I had CMVD. She is head of the women’s heart clinic at Stanford.
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Hi again Stephanie – I’m not a physician, but my own observation (as a person who had both a textbook heart attack caused by an occluded LAD and who was then later diagnosed with MVD) is that it’s very possible to have two for the price of one form of cardiovascular disease! Is your cardio Dr. Tremmel? If so, she has a terrific reputation as a researcher and I would trust everything she says! She is also the doctor of my blog reader Mary (see her comment below). 🙂
Yep. Jennifer Tremmel. She is cardiologist #6 and I’m sticking with her. LOL
Interesting that we both had the 100% blocked LAD and then the chronic angina. Dr T says there is a disproportionately elevated number of women who walk away from stenting with the added onset of endothelial dysfunction. I had chest pain on and off for 2 years before my STEMI so it’s possible that I already had this problem and the heart attack and possibly the stenting also exacerbated it. Dr. T said that if you have a reaction to the Adenosine then it’s CMVD. If you react only to the Acetylcholine (like me) then it is ED alone. A reaction to both equals CMVD and ED.
I suppose I find it odd that not many people mention ED alone without CMVD. Perhaps that is just because CMVD is assumed when a patient responds well to nitro but has not actually been tested with these two drugs? It is all the same chest pain affected by emotional and physical stress but wouldn’t it be beneficial to the study and treatment of both these disorders to actually know if one had ED, CMVD or both?
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I agree! I think it would be beneficial to actually know if we had ED, MVD or both or none of the above! More beneficial, however, is:
1. not having our significant cardiac symptoms dismissed (a few weeks after my MI, I went in for a repeat angio for suspected “stent failure”, but when my LAD was “clean as a whistle”, the interventionalist wrote the words “Non-Cardiac” on my chart. I was devastated – I knew something was terribly wrong, but I feared I’d have to now fight for a diagnosis if a real life cardiologist had written that in my medical files!
2. coming up with an actual treatment plan that addresses debilitating symptoms.
Coincidentally, the pain specialist at our hospital’s regional Pain Clinic had done a research fellowship in Sweden some years earlier specifically to study coronary microvascular disease – he and my wonderful cardiologist (NOT the guy from that second trip to the cath lab) had been interns together after med school so were ‘old buddies’ from way back, hence my cardio’s suggestion after the second cath to refer me to his friend to see if he could help me. I now see him regularly at the Pain Clinic.
You and I have something else in common, Stephanie: we are very lucky geographically to be close to informed professionals who know this diagnostic subject so well. Many of my blog readers are not so lucky and suffer for a long time before a correct diagnosis is reached.
Ha! Deja Vu again! My 2nd angio was after I passed out from pain and exertion. They thought, based on a stress echo, that my stent might be narrowing…NOPE…you’re fine go home! FINE?? I did contact ALL of my past cardios after my ED diagnosis. I wrote very nice letters and updated them on my diagnostic journey. Some were humbled and wide-eyed, others were unresponsive to receiving the news. Dr. T. is a 7 hour drive so I only see her 3 times a year and I have a local cardio and he was most respectful of the challenge angio results. I asked him if he had any other patients like me. He said that he strongly suspected he did and that he treats them for symptoms, but he has never seen test results like those I presented from Stanford.
This test as well as less invasive tests must become much more readily available to utilize in the process of identifying and treating patients with this disease.
I can honestly say that the worst moments in this whole journey were not the days of unrelenting pain but the anguish of hopelessness and dismissal by the cardio “establishment.” I am not a doctor but I am and always will be the proverbial expert on how I feel.
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Geez Louise, I guess I’m luckier than you! I live just six blocks from both my cardiologist and my pain specialist here! A seven hour drive!?! That says something about the lengths (literally) that patients are willing to go for an accurate diagnosis and treatment plan. Good for you for contacting all those former cardios to enlighten them on your actual diagnosis. You did them and their future patients with non-obstructive heart disease a big favour…
And you are SO RIGHT, Stephanie – dismissal by one’s doctors is far worse anguish than any physical/emotional pain.
I was diagnosed with Syndrome X, aka microvascular coronary disorder last year after struggling for six years.
My life has been about giving up one thing after another. I suffer severe chest pain if I carry groceries more than ten feet, if I swing on a swinger, if I sing. This is very difficult and I feel no relief in sight. I am on my third doctor. I hope this comment finds its way to someone else who has MCD so I don’t feel like the only one. Maybe someone knows something that can help. Thank you.
Excellent post, Carolyn! Very comprehensive. A couple of things:
1) Heat or cold can make any of that list happen. In ideal cool (not cold) temps, I can walk that block or two. If I am too hot, either overdressed or if the temperature is too warm, all the symptoms flare up and I get all the CP/SOB (chest pain, shortness of breath). If I were to park in a hot parking lot, walk to the store in a hurry, I’m generally OK by the time I get to the A/C and can lean on the cart in the store. When I come out of the store into hot weather, walk across the lot and get into a hot car, my body cannot adapt fast enough and I get symptoms. Symptoms can bring on a flare or an episode, where it renders me done for the rest of the day. Therefore, a handicapped tag is immensely helpful to keep me close to the store and minimize the exertion before I need it during the shopping trip.
2) Ditto for the emotions that are referred to. An example is hurrying to get to an event or a trip or work, etc. Any (and I mean ANY) stress of getting ready can also trigger vasoconstriction. The endothelial dysfunction that is underlying the disease means the vessel behaves PARADOXICALLY to what a vessel is supposed to do. When it’s supposed to dilate to accommodate stress, exertion or temperature (and even sound, like unpleasant music that annoys you), or noxious fumes like smoking and idling diesel, it constricts – and vice versa. This renders me less or unable to cope with the exertions and emotions and temperatures of everyday life. Emotions are not just high drama like death, divorce or uncooperative teens, work and family. It’s the every day stresses and strains which are almost unconscious to us (and to a degree, uncontrollable) as we go through a day.
This is why we may look fine on that DASI test under perfect conditions, but throw in the intangible factor, such as heat and humidity or cold weather and the answers don’t add up. It is confusing for the patient and the doctor.
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Glad to have your two cents worth here, Mary. I often say that “running late” seems to be a major trigger for my MVD symptoms just as surely as jogging fast up a steep hill might be for stable angina folks. I’ve learned from experience to give myself half an hour minimum for getting to any appointment (even if it’s just a 10-minute walk) UNLESS it’s a particularly hot/cold day, in which case I add several minutes onto that minimum. It’s a full time job just scheduling factors like this!
A treatment for disabling angina symptoms that occur with common daily tasks is external counterpulsation therapy. It is a non invasive treatment of a series of cuffs placed on the legs and buttocks, that sequentially inflates. This pushes the blood to the heart wall and helps to form collateral circulation. I have treated many women with this and most will see an improvement in their DUKE activity scores by two or more points. Many are able to return to exercise which at one time they could not due because of angina symptoms.
If you would like to learn more about ECP therapy read this link.
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Thanks for this info on ECP. A series of these treatments typically continues for 2-3 months. Do you know if health insurance covers the cost of this series? I wrote more about this therapy here.
Another non-invasive method of managing intractable angina is neuromodulation using a portable TENS unit, which I’ve been wearing for treatment of coronary microvascular disease pain symptoms for a few years now.
There are many insurance companies that do cover ECP therapy, Medicare does as well. The treatments are 36 treatments done over 7-9 weeks, each treatment lasts one hour. The fun part for a clinician like me is when a person has had treatment and later has another heart cath, you often see a patchy white appearance on the heart which is the new collateral formation.
Mary, your April 1 reply was so descriptive of my problems with this. I can’t tolerate loudness, have to wear earplugs when at noisy places, bright flashing lights are horrid, and all those other little “annoyances” to most folks amazingly, unfortunately trigger the chest pain.
A neuro Dr. told me I have a hypersensitive nervous system but there is nothing he can do for it 😦 I do find the Ativan somewhat helpful.
Any other suggestions to tone it down? I meditate, nap, take deep breaths, etc. Hypnosis? Have tried acupuncture but no great improvement.