Findings from the federally funded Women’s Ischemia Syndrome Evaluation (WISE) study — a landmark investigation into ischemic heart disease (meaning reduced blood supply to the heart muscle) – are helping us to understand that, as the Harvard Women’s Health Watch puts it: heart disease – like cancer – is not one, but several disorders.
While I was at Mayo Clinic shortly after my heart attack, I also learned that at least two of these disorders are far more commonly seen in women than in men’s “Hollywood heart attacks”. These two heart conditions involve the smallest of the heart’s blood vessels in coronary microvascular disease (MVD) as well as non-obstructive issues like coronary artery spasm (CAS).
For example, these also happen to be the diagnoses delivered to an Australian woman who suffered a serious heart attack at age 51 - despite having no identifiable cardiac risk factors.
It took her a year after surviving that heart attack before she was finally appropriately diagnosed with a coronary artery spasm disorder sometimes known as Prinzmetal’s variant angina, and then another two years before she received a further diagnosis of coronary microvascular disease (MVD) – missed because most standard cardiac tests are designed to identify only obstructive heart disease in major coronary arteries.
Frustrated with the lack of awareness of these conditions by many of the medical staff that she had encountered during this time, she set out to gather a solid list of credible journal references about these under-appreciated conditions in women to share with other women, and with her health care providers. She explained:
“At my last visit to our local hospital, I suspected that all the nurses were treating me as if I had an anxiety disorder, even though my medical chart clearly indicated Prinzmetal’s variant angina. Some staff were very gentle and some were extremely rude. Some ignored my requests for chest pain relief and some were helpful.
“Overall, it was a really bad experience. I decided that I would have to do something about it. So after cooling down, I put together some very relevent material for ‘the powers that be’ in the hope that the hospital staff may actually be educated about coronary artery spasm (CAS) and microvascular disease (MVD).
“To be honest, I hold out little hope that anything will change, but at least I can say to myself that I have made a genuine effort to better my situation.”
To help her better her situation – and especially that of other women whose debilitating symptoms may have been blown off by uninformed medical staff because of “normal” cardiac test results – I asked for her permission to republish her comprehensive resource list here.
If you (like this Australian survivor and I both experienced) had “normal” cardiac test results during what turned out to be a heart attack, please print off her resource list below and share it with your friendly neighbourhood physicians and nurses:
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Negative Stress Test Does Not Rule Out MVD - American Heart Association: Circulation: Cardiovascular Interventions
“The presence of a negative non-invasive stress test does not rule out coronary vasomotor dysfunction (MVD) in symptomatic patients with non-obstructive coronary artery disease.”
Andrew Cassar, M.D., M.R.C.P.(U.K.), Panithaya Chareonthaitawee, M.D., F.A.C.C., Charanjit S. Rihal, M.D., F.A.C.C., Abhiram Prasad, M.D., F.R.C.P., F.A.C.C., Ryan J. Lennon, M.S., Lilach O. Lerman, M.D., Ph.D., and Amir Lerman, M.D., F.A.C.C.
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Standard Tests Don’t Detect Microvascular Disease - Harvard Women’s Health Watch
“Heart disease, like cancer, is not one, but several disorders. Discoveries from the WISE study suggest that many women have a form of Heart disease called coronary microvascular dysfunction (MVD) that isn’t detected by standard diagnostic procedures and thus goes unrecognised and untreated.”
“The research, led by Dr. Noel Bairey Merz at Cedars-Sinai Medical Center in Los Angeles, is laying the groundwork for better ways to evaluate and treat women with heart disease.”
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Coronary Microvascular Disease Can Cause Serious Problems - Mayo Clinic
“Because small vessel disease can make it harder for the heart to pump blood to the rest of the body, small vessel disease can cause serious problems if left untreated, such as coronary artery spasm, heart attack, sudden cardiac death,
heart failure.”
MayoClinic.com, Small Vessel Disease
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Coronary Microvascular Disease is Difficult to Diagnose - PBS Second Opinion transcripts
“Coronary microvascular disease is an elusive disease. It doesn’t show up on many standard tests. MVD is a disease that’s just as dangerous as coronary artery disease, and it increases the risk of heart attacks and heart failure. The characteristics of microvascular dysfunction include:
no obvious blockages but blood flow to the heart is still low;
vessels that don’t expand or dilate properly during physical or emotional stress; vessels that spasm abnormally.“Diagnosis remains the biggest hurdle for people with coronary MVD.”
Louis J. Papa, MD, FACP, Kathy Kastan, LCSW, MAEd Kim Kachmann-Geltz, Noel Bairey Merz, MD, Matthew Burg, PhD, Gladys Velarde, MD
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Coronary Artery Spasm without ST-Segment elevation - Journal of the American College of Cardiology
“It should be emphasized that most patients with CAS (Coronary Artery Spasm) do not have ST-segment elevation when seen in the emergency department or office with chest pain.
“The important clinical point is that absence of ST-segment elevation during chest pain should not exclude CAS; the reference standard for CAS is visualization during angiography.”
Carl J. Pepine, MD, MACC Professor of Medicine, Division of Cardiovascular Medicine, University of Florida College of Medicine in Gainesville, Florida.
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Vasospastic Angina and Coronary Microvascular Spasm - Journal of the American College of Cardiology
“Coronary microvascular spasm causes myocardial ischemia in patients with vasospastic angina. The result suggests that coronary microvascular disease may also contribute to angina in patients with “vasospastic angina (CAS).”
Hongtao Sun, MD; Masahiro Mohri, MD, PhD; Hiroaki Shimokawa, MD, PhD; Makoto Usui, MD; Lemmy Urakami, MD; Akira Takeshita, MD, PhD
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Coronary Artery Spasm and Coronary Microvascular Spasm - Cardiovascular Sciences Research Centre
“Microvascular angina affects a large number of people. These patients have typical chest pain and some evidence for myocardial ischemia, but the coronary arteries are absolutely clean. Many of these patients are considered to have non-cardiac problems, who are then ‘reassured’ that there is nothing wrong with the heart. They are sent back home with the same problem that they came with.
“It is an important condition to be taking into consideration. There is a connection between coronary artery spasm and microvascular angina, particularly when the microvascular angina patients develop coronary microvascular spasm.”
Professor Juan Carlos Kaski, Head of the Cardiovascular Sciences Research Centre and the Microvascular Angina Clinic, St. George’s University of London, U.K.
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The ACOVA Study: Abnormal COronary VAsomotion in patients with stable angina and unobstructed coronary arteries - Journal of the American College of Cardiology
“Nearly 50% of patients undergoing diagnostic angiography for assessment of stable angina had angiographically normal or near normal coronary arteriograms. The ACH test triggered epicardial or microvascular coronary spasm in nearly two-thirds of these patients.”
Ong P, Athanasiadis A, Borgulya G, Mahrholdt H, Kaski JC, Sechtem U. Robert-Bosch-Krankenhaus, Department of Cardiology, Stuttgart, Germany.
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Coronary Artery Spasms Often Occur At Rest - Mayo Clinic
“A coronary artery spasm is a brief, temporary tightening (contraction) of the muscles in an artery wall in your heart. This can narrow and decrease or even prevent blood flow to part of the heart muscle. If the spasm lasts long enough, it can lead to chest pain (angina) and possibly a heart attack (myocardial infarction). These spasms may also be referred to as Prinzmetal’s angina or variant angina. Unlike typical angina, which usually occurs with physical activity, coronary artery spasms often occur at rest.
“Only about 2 percent of angina cases are Prinzmetal’s angina. Coronary artery spasms are more common in people with risk factors for heart disease, but the spasms also happen in people who have no risk factors. Coronary artery spasms can also occur in people who have conditions that affect their immune systems, such as lupus.”
Martha Grogan, M.D. Mayo Clinic cardiologist
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Joan Jahnke Shares Her Story - Emory University
“Joan Jahnke, a patient of Dr. Habib Samady (Professor of Medicine at Emory University School of Medicine and Director of Interventional Cardiology at the Emory Heart and Vascular Centre), shares her journey through cardiac microvascular endothelial dysfuntion with vasospastic angina:
“A big frustration with many MVD patients is that our complaints and symptoms often bring us to an urgent or emergent care setting where none of our signs show on any EKG, echocardiogram, ultrasound or treadmill stress tests.
“We look well, present with chest pain and shortness of breath – perhaps anxious – but the tests are generally negative, even the cardiac enzymes. We repeatedly return seeking help, knowing that it is our heart, but we repeatedly fail the best current technology tests.”
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Q: Have you had “normal” cardiac test results despite what turned out to be a serious heart issue?
See also:
- My Love-Hate Relationship With my Little Black Box
- How Women Can Have Heart Attacks Without Having Any Blocked Arteries
- Coronary Microvascular Disease: a “Trash Basket Diagnosis”?
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This article has been an eye opener. Thank you so much. I have suffered for so long. Seen so many doctors that I can’t even count them all. All saying the same thing, giving that look like I’m crazy or having me feeling like I am. Was just recently diagnosed. I finally have answers.
Wow I felt so alone for so so long
Glad you found this helpful, Pam. It’s a relief to finally get an accurate diagnosis, and even more of a relief to know you’re not alone (or crazy!)
How can I share a link for this page to facebook?
Hi Debbie and thanks so much for your comments. There are two ways to post a link to this on Facebook: you could copy the URL at the top of the page http://myheartsisters.org/2012/08/15/microvascular-and-spasm-disorders/ and just paste it onto your Facebook page. But even easier is just to click on the Facebook icon at the very bottom of the article under “Share This” and that should work.
Thank you for this great article and all the info. So MANY women need to know that Heart disease and heart attacks can be vastly different in women. So many women go undiagnosed each year because they and their primary care physicians lack this kind of information!!
I just had a right and a left heart cath Tuesday and it came back all clear. As soon as he said he was done and I was about to be wheeled out of the cath lab, the pain hit me again and I was crying on the table. The nurse asked me was I okay, and I told her I was in pain and it was a 7 on a scale of 10.
He came in and said he didn’t see anything while performing the caths and that he can reassure me I did not have Coronary Artery Disease and would not drop over of a heart attack. I asked him could it be vasospasms and he again said he didn’t see any indication while performing both caths. He took me off of Toprol XL and put me on Verapamil.
I’ve had all the testing I know of, and this chest pain is not changing with Toprol or Verapamil. I’m scared to death about having a heart attack if the spasms don’t let up.
This is going on for a month, and nothing is taking away this pain. I’m about to get a 2nd and 3rd opinion because this chest pain at rest and not on exertion is beyond concerning to me. Why don’t these doctors listen? WHY?
I’m scared to death. I know my body, and I know something is not right. I shouldn’t be having chest pains that make me grab my chest or chest pains that travel to my shoulder, elbows, fingers and back and the insides of both arms. That’s not normal.
I’m scared and I’m sick of everyone not taking my concerns seriously…even my family. I never complain about being ill…but when I do, it’s always been proven to be something major that I wind up in the hospital for weeks at a time. So I know this chest pain, that is momentarily relieved with nitroglycerin is more than meets the eye.
I’ve had anxiety and panic attacks…this is not the same. I don’t have a racing heart and shortness of breath at the same time. I’m short of breath, and only get a racing heart when I’m exerting myself. And the chest pain is not GI…that came back normal again during my endoscopy, and 50 million tests 2 weeks ago when I was admitted to the hospital with the pain not getting better.
Dolores
Hello Dolores – sorry to hear of this litany of distressing symptoms. No wonder you are scared. So much of medicine is simply ruling out what the problem isn’t – but when we continue getting “normal” test results, it makes the mystery that much harder to solve. Verapamil (a calcium channel blocker) is often prescribed for spasm disorders, so if this were caused by coronary spasm, you could expect some relief. If symptoms were caused by coronary microvascular disease, one of the tests that can diagnose MVD is called Adenosine Coronary Flow Reserve and Acetylcholine Endothelial Function Test with Cardiac Magnetic Resonance Imaging (MRI) – have you had one of these? More on this here.
Right now, these frightening symptoms may or may not be heart-related, but you just don’t know for sure yet. Getting a second (or third opinion) seems like a reasonable option for you – good luck and please let us know what you find out!
Hi Carolyn it’s Bruce.
It’s not just women with this disease. I got chest pain 10 years ago worsening at rest radiating to neck, ear, left arm, leg, back mainly when I went to bed. Also cold hands (raynaud) and cold feet. Like everyone else, had every test, angiograms the lot but nothing.
Was prescribed sleeping pills for pain and kept on going. Chest pain got better but I still carried this feeling of an impending heart attack; my heart would start to race and blood pressure would go through the roof but because my weight was normal, I was only 34 and pretty fit, though I did smoke – all this would be put down to anxiety.
This was enough to give you anxiety. I mean you know were the pain is and what your body’s telling you. So by this time my wife had had enough, we had seen that many doctors, the last one a general physician with a psychiatric degree who gave me a thorough examination and agreed that my condition seemed physical. Yes, like I needed to know that.
So I lived with this thing for about ten years without medication living a fairly normal life but having a limit on how far you could push yourself. Scared to do a lot of things like flying or drinking too much or anything that would put undue stress on my heart. You can imagine what my wife’s going through with doctors saying nothing’s wrong test after test, she’s starting to side with them.
So about 4 months ago, my dad had a heart attack and was in hospital for a month. All this stress brought on a few of these heart racing moments one being worse than I’d ever had. I was at Fremantle hospital at the time and admitted myself to E.D. so here we go again: blood tests, ECG and after 10 years – guess what, everything normal, just anxiety,yeh great.
So next few days, I start working again but start running short of breath, at end of day really bad chest pain and left arm. Things get worse, run out of breath at rest. Returning to Fremantle E.D. about five times, even Christmas day I left my 11, 13, 15 year old children crying with their presents in their hands.
Leaving them that morning is one of the worst moments of my life. not being able to enjoy that moment. After about 5 hours at hospital I was lying there waiting for it to cool down, it was 40 degrees and you don’t do well in heat with this thing. The nurse said to me come on, off you go, there’s nothing wrong with you we’re not a hotel you know, with 20 vacant beds next to me and christmas day – thanks. Just another bit of humiliation that comes with this disease.
Seeing specialist, getting all tests including myocardial perfusion scan but nothing. I just lay on the lounge all day now, my quality of life gone. Before this I didn’t stop, my eldest girl says I was a workaholic. She says get up dad and do something..
Symptoms now are spasms in my arteries in my legs, which are now starting all over my body. My heart’s too weak now but I would have liked a diagnosis so my wife and kids could believe how sick I really was. But reading about microvascular disease it makes sense. Can’t believe how they are overlooking these symptoms if they had put me on medication for the symptoms I had 10 years ago I might not be so bad.
But they are still dismissing thousands of cases. Not fighting one disease but two: cardiovascular & humiliation anxiety
Oh Bruce. What a nightmare ride you’ve been on. Please see your physician again and ask for a referral to a cardiologist who is familiar with microvascular disease and spasm disorders. Print off the journal articles noted here to bring with you. Hang in there – Good luck to you on this journey.
I too have chest pain for the last 30 years. I finally got diagnosed with coronary small vessel spasms not small vessel disease. I do not have any heart disease only the spasms in the small vessels. I went thru so many test for so many years. I finally went to the Cleveland Clinic in Cleveland and saw Dr. Heupler, Cardiologist. The Dr. prescribed diltiazem 120 MG C. I took myself off the medicine because too many side effects. I did a lot of research (2 years) and decided to take the fast acting nitro (only when needed) I also take L-Citrulline, L-Arginine, vitamin c, vitamin d, calcium and mag. this seems to work for me. No chest pain at all. I know my vitamin d was very low(9) now it’s up to 60. Good Luck
Thank you, thank you!!! I believe I just experienced this last Sunday! I have been having these ‘events’ for about 5 years and they can be terrifying. It is so disturbing to have spent 8+ hours in the ER (this time) and to have been sent home with the same pain I arrived there with.
I have had stress tests, nuclear stress tests, endoscopy, and numerous other exams. I have been diagnosed with GERD and anxiety and treated like a second class citizen by the local ER. I have worn Holter monitors and been evaluated by cardiologists with no result that suggested heart involvement.
It is so amazing that I found your information on a website! I have an Internist (I ditched my GP) appointment in the morning and I am taking this information with me!
Perfect timing, Ruth! Good luck tomorrow at your doctor’s appointment. Please keep us posted.
What a wonderful compilation. Thanks to our Australian sister and to CT for making yet another outrage into an opportunity to learn and build our own confidence.
I just got a different “non-standard” cardiac diagnosis after years of reported symptoms and abnormal EKGs. Over 6 years ago, a clear angiogram led to reassurance and dismissal of my symptoms; my primary doc and the cardiologist clearly thought I was obstinate and wasting their time. The Gold Standard – yet again. It didn’t help that (by error) ANXIETY was on my medical record.
Come to think of it, maybe I AM obstinate, and for good reason. Yes, it is a wonder that some of us are still here.
Hi Kathleen – let’s hear it for us obstinate types. As we used to say in the early days of feminism: “Uppity Women Unite!”
Hurrah! Excellent references. Although I do not suffer from this disorder I feel you have surely contributed to your karmic bank account in the sky on this one. Perhaps you need to be kicked in the Smart Car-ma rear end more often? Just look at the good it led to!! Beamie
Thanks so much Beamie – but I’m just the messenger; this list came to me from our Australian heart sister who compiled a whack of (credible) resources. Best list I’ve seen yet. PS Still driving and loving my little green car….
Hi Carolyn! Yes, yes, and yes. Prinzmetal angina, coronary spasm, micro vascular disease, MI, wrong diagnoses, dismissiveness at ER, endless “healthy” labwork, imaging, stress tests.
All part of my saga yet I am still here to talk and, at times, rant about it.
JG
It’s amazing that some of us are actually still here. Reminds me of an E.R. story one of the women in my heart health talk audiences told me: she overheard the (male) doctor saying this to the (male) patient behind the curtain in the next bed: “Your blood tests are fine, your EKG is fine – but we’re going to keep you overnight for observation just to make sure it’s not your heart!”
Thus yet another man with cardiac symptoms but “normal” diagnostic tests is kept in hospital to carefully observe, while women in the same boat are booted out the door, feeling embarrassed, misdiagnosed with everything from indigestion to menopause or anxiety. Keep ranting, JetGirl!
That is amazing – thank you! Few times over the past 15 years, after some major stressful periods I would have heart issues and after many tests, hospital stays I would be sent home with no diagnosis!
This year though in May I was finally diagnosed with Small Vessel Disease still not convinced yet because my pain comes on with exertion and with rest, This time around it didn’t go away, it’s here to stay I’m afraid!
Hurray, you finally have a diagnosis! It’s common for MVD to come on during rest. My symptoms flare with stress, too. Always better to know than to be told “it’s nothing”. Take care….