Misdiagnosed: women’s coronary microvascular and spasm pain

by Carolyn Thomas  ♥  @HeartSisters

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 are coronary microvascular disease (MVD) and 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 coronary artery tests are designed to identify only obstructive heart disease in major coronary arteries.

CAROLYN’S NOTE: After my heart attack in 2008, I too was subsequently diagnosed with MVD following a second trip to the cath lab ruled out “stent failure” (gotta love that terminology!)  See also:  My Love-Hate Relationship With my Little Black Box

Frustrated with the lack of awareness of these conditions by many of the medical staff that she had encountered during this time, the Australian woman 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.  As 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 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 Spasm–Induced Non–ST‐Segment Elevation Acute Coronary Syndrome – Journal of the American Heart Association

The study showed frequent involvement of coronary spasm in the pathogenesis of Non-ST Elevation Myocardial Infarction- Acute Coronary Syndrome (NSTE-ACS).  Variant angina was observed in one third of patients with spasm‐induced NSTE‐ACS. Compared with the obstructive group, patients of the spasm group were younger and were less likely to be hypertensive or to have dyslipidemia, diabetes, or previous myocardial infarction. Coronary spasm should be considered even in patients with fewer coronary risk factors and non-obstructive coronary arteries.”

Koichi Kaikita et al. J Am Heart Assoc. 2014; 3: e000795

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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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* Diagnosing non-obstructive coronary artery disease:  If a physician is not familiar with coronary artery spasm or coronary microvascular disease, it’s often unlikely that additional cardiac tests will be ordered once conventional EKGs, stress tests or cardiac enzyme blood tests are interpreted as “normal” in the Emergency Department. Coronary Artery Spasm is explained by Mayo Clinic cardiologists as a temporary tightening (contraction) of the muscles in a coronary artery wall in your heart. This can narrow and decrease or even prevent blood flow to part of the heart muscle. Unfortunately, spasm disorders are often missed using conventional cardiac diagnostic tools like cardiac catheterization (angiogram) – unless accompanied by what’s known as “provocative testing” to try to provoke a spasm during the procedure using a type of medication or hyperventilation.  Unlike typical angina, which usually occurs with physical activity, coronary artery spasms often occur at rest.  Similarly, diagnosing Coronary Microvascular Disease is difficult using standard cardiac diagnostics that are designed to identify large blockages in large coronary arteries. Dr. Noel Bairey Merz believes that the best current diagnostic test for detecting MVD may be something called coronary reactivity testing. This angiogram-like test lasts 60-90 minutes and allows doctors to see how very small vessels supplying the heart respond to different “challenges” from medications.

UPDATE:  Coronary vasospasm disorders have also been found to be caused by a rare allergic reaction called Kounis Syndrome, treated with corticosteroids and antihistamines.

There may also be a line between hypothyroid issues and spasm disorders. Learn how this heart patient tracked down the culprit here


Q:  Have you had “normal” cardiac test results despite what turned out to be a serious heart issue?

See also:

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117 thoughts on “Misdiagnosed: women’s coronary microvascular and spasm pain

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  2. You have got it in a nut shell, I have CAS & MVD for the past three years. In Australia it is not so common but I was diagnosed by Prof Chris Zeitz and Prof John Beltrame. I am in good hands and I am on a cocktail of medication which is helping to control it all.

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      1. Medications I am currently taking are as follows: in morning, Ivabradinen 7.5mg, Nifedipine 30mg, Amlodipine 2.5mg, Pregabalin 75mg, Sertraline 100mg, Aspirin every second day, 7.5mg meloxicam-ga, in the evening, Ivabradinen 7.5mg, , Nifedipine 60mg, Amlodipine 2.5mg, Pregabalin 75mg, Levlen 30mg, vitamin D 1000ium, Loratadine, Nitro Dur 10 patch when needed.

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    1. Please tell me what the cocktail is? Been going thru this since 2008. So tired of all the Doctors and Nurses thinking I am crazy.

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      1. See Sue’s November 20th reply (above) for a list of her meds. Remember that these happen to work for Sue – may not be appropriate for you or me or anybody else. Best of luck to you, April…

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  3. My wife has similar issues going on and the incidence rate seems to be increasing. We are located In South Arkansas. Does anyone know of a doctor experienced in Prinzmetals, small artery disease, and artery spasms somewhere near Shreveport La, Little Rock Ar, Dallas Texas, Houston, or even Oklahoma City? Any suggestions would be appreciated.

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  4. Hi! I’m glad I found this. I feel the need to tell someone what’s happening to me. For a period of over ten years (I’m about to turn 38) I’ve had symptoms like shortness of breath, syncope and dizziness always exhausted but with periods of just extreme fatigue, palpitations, and more recently chest pain but not excruciating pain, more like my chest is being squeezed or a big weight on my chest. What first made me look for medical attention was when I was going through some really stressful situation in my life all of a sudden I just started feeling dizzy but the kind of dizzy that would start with ringing in my ears and then everything goes black. It was hard for me to go up the stairs as I was out of breath and extremely tired just by doing that. Went to the cardiologist and after an echo he said that there was thickening in my heart’s left muscle. That is all he said and he prescribed toprol 20mg to help with the palpitations. After that I didn’t have insurance so I never went back to the cardiologist. Now 5 years later, I found myself helping out in a remodeling project for my church when suddenly I started feeling the squeezing of the chest with some mild pain, shortness of breath dizzy and just an overall feeling sick. Instead of going to the ER I drove home and went to bed. I felt as if I had been hit by a truck and like I had the flu or something like that. It took some weeks for to start feeling somewhat better. Did all I could to get insurance and now my primary doctor, I feel is not taking me serious at all. He finally gave me a referral to a cardiologist. They did a stress test and an echo and they both came out ok. So I started researching my symptoms and came across Microvascular disease and this just described me because my symptoms are not always present, they come and go except for now they kinda have stayed a little longer and the fatigue which is always present. I asked my cardiologist if could rule out microvascular disease and his response was that there’s not a test that exists to rule it out. I found it hard to believe because all the information I’ve come across suggests otherwise. He just dismissed me saying I should live my life as normal as possible. Can anyone help me?

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    1. Hi Susana – I’m not a physician so of course cannot comment on your particular medical diagnosis. I can tell you generally however that the preferred diagnostic tool for correctly identifying coronary microvascular disease (MVD) is called coronary reactivity testing – although diagnosis is always the trickiest part of this condition. Right now, you have no idea whether your symptoms are heart-related or not – it’s entirely possible that they have nothing to do with your heart, especially as you say that you had a 5-year break between symptoms. We also know now that chronic anxiety can duplicate cardiac symptoms and can make all symptoms feel even worse than they are. Try this: start recording your significant episodes in writing, tracking what you were doing/eating/feeling both before and after each one to see if there’s a pattern you can identify and report to your doctor – and then in between these significant episodes, try not to focus on minor symptoms. If you become hyper-vigilant, I guarantee that you WILL find lots to worry about (whether or not they’re heart-related at all). Best of luck to you…

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      1. Carolyn, thank you for replying and your kind advice. My husband and I have decided to do just that. I just want to clarify that that I’ve always had the symptoms, I would simply try to take it easy and I would start feeling a little better in a manner of days. I kept doing this for the past 5 years until that particular episode I had a few months ago. It was so bad that looking back I know that I should’ve gone directly to the hospital and not home. It just shook me in a way that I started seeking help.

        Thank you again. I am convinced that’s exactly what I need to do, keep a record of the significant episodes and try to make some lifestyles changes. I’m determined to live my life as normal as possible even if there are limits to what I can physically do at the moment. I’m done trying to convince doctors of my symptoms. I have faith that the day will come when I no longer will say I’m sick. Isaiah 33:24

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  5. Well it’s Sept 2014 – are y’all still keeping this conversation going? Cause i’m loving it. I’ve had unexplained chest pain for 25 years. I can still remember my first one vividly, terrible. Had every test known to man, best diagnosis, possible prinzmetal angina. Haven’t seen a cardiologist in 5 years, pain is awful. Quit going to the ER. I take a nitro and pray pray pray. Any words of encouragement gladly taken. I’m 65 yrs old now, female and listening very carefully what to do. I have had 25 episodes since Jan 1st, 2014. Today is Sept 15, I keep a log now, sound familar to anyone, mostly during the night.

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    1. Hi Susan – “unexplained chest pain” for 25 years? That’s a long time with no answers. If your diagnosis of Prinzmetal’s angina is correct, there are medications that can help, including your nitro. Another is the “calcium antagonist” family of meds such as Norvasc, Cardizem, etc. It’s time to see a cardiologist, preferably one with experience in treating microvascular or vasospasm issues of the heart. Bring your record of episodes with you to the appointment – and print off this post as well in case your doctor wants to see sources/journal references. As you already know, symptoms tend to become worse with cold, emotional stress, smoking etc. and can come and go in cycles (which is “normal” for a chronic diagnosis like Prinzmetal’s). Best of luck to you…

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  6. Oh my gosh, Carolyn, thank you again. Like you, I am in the “special” group of women who have had the LAD “widow maker” MI, just 95% in my case, with two stents. That was 11 years ago. I had a perfectly normal stress test with nuclear studies six months ago and a heart attack while perfectly relaxed on vacation two weeks ago. Guess what? “Grossly normal coronary arteries” shown in the cath. I’m happy to be alive, truly.

    But the docs on vacation, in that small town in Colorado that used to be home, gave me a secondary diagnosis: “anxiety disorder” (gasp, sputter!), based on what!?! They didn’t do a psych eval and completely ignored my husband and me when we tried to tell them I do not have that! And they wouldn’t call my home doctor, who would confirm our claims. One doc suggested maybe some “micro vessel micro spasms,” but in the end they landed on stress induced cardiomyopathy, which still makes no sense. They sent me home from 3 days in the ICU with elevated troponins (3.4) and a bottle of Ranexa and Valium. (What the – huh!?)

    I was so relieved to get home and see my own cardiologist, who looked at all the reports and said, “yep, you had a heart attack.” But the next day, yesterday, I had a “perfectly normal” stress echo. He has no idea why it happened or how I can prevent a recurrence. I was kind of stunned when he denied the existence of microvascular disease. Hello? What?

    So I don’t know where to go next. Mayo? Cleveland? A beach in Hawaii?

    Liked by 1 person

    1. So many thoughts whirling around my head while reading your story, Beth. First, microvascular disease, as I like to say, is not something you “deny the existence of” – like Santa or the tooth fairy. And there’s only one thing more anxiety-producing than having a frickety-frackin’ heart attack – and that’s being told there’s nothing wrong with you but a little anxiety disorder. My prescription: Mayo, Cleveland AND the Hawaiian beach but not necessarily in that order . . .

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  7. Thank you for this article. I too have MVD and CAS. All my tests came back normal but I had a doctor who knew something was wrong. Only problem is she left the practice and I got stuck with a Doc who believed if you didn’t have a blockage you didn’t have a heart problem.

    At one point he told me it was my stomach. I have now switched doctors to someone who believes in MVD and CAS, he just doesn’t seem to know how to treat it if it’s persistent. He has thrown every drug at it and it is still uncontrolled. So at the end of the month I am going to bring up the research about the TENS machine. I dislike those machines but I just really want some relief and I want to be able to play and keep up with my 3 year old this summer. My goal is to be able to be active again, not run a marathon active, but to be able to keep up with my son’s activities and maybe just maybe cut down on the pharmacy worth of meds I take at 35.

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    1. Thanks for sharing your story. It seems odd to have a doctor described as somebody who “believes” in coronary microvascular disease or coronary artery spasm.

      We are not talking about Santa Claus here! These are known cardiovascular conditions that have been studied and reported on in the medical literature – not something about which belief is optional. Good luck to you in your ongoing treatment decisions.

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      1. My new doctor is very good, just stumped. It is my words that he “believed in it.” It’s the one old doctor who didn’t seem to acknowledge the heart condition. I think sometimes it has to do with small town doctors. I now drive 2 hours to a big city and see the head of a cardiac practice at a well known hospital. The doctor who didn’t believe has since been let go from the hospital so at least that’s some good news in case I ever have to go back to that hospital.

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        1. You raise an important issue about reality: the difference between small or rural hospitals that may never/rarely treat certain conditions and big city hospitals that have far more experience in doing so. It’s worth the 2-hour drive.

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        2. Long story short, I am 40 years old, female, former smoker and recovering addict. A few months ago, I started having really bad pains in my chest, while I was just sitting at work, driving, or even sleeping.

          Went to a local doctor in my itty bitty town, and he said I’m having anxiety attacks. I knew that wasn’t the case. This week, I made the hour and a half drive to UT in Knoxville, where the doctor told me I have Prinzmetal’s angina. Not sure what to do, say, think or feel about all this. But, I do know what you mean, Shelley.

          Out here in itty bitty-ville, they chalked it up to a dramatic female. Glad I took the time off work to go to Knoxville.

          Liked by 1 person

          1. Laura – big city health care is such an important factor in how we’ll be diagnosed/treated. Smaller health centres simply don’t get the traffic in patients with Prinzmetal’s or MVD that big hospitals get (nor do they tend to attract physicians who are experienced in many rare or unusual conditions). This is true in all departments, not only in cardiology. Best of luck to you…

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    2. I too was in the same situation. One day when unable to see my doc, I saw her PA. When I told her how unhappy I was about taking meds and the side effects, she suggested I take the amino acids L-arginine and L-carnitine. Two days later spasms stopped. After researching this on my own I am now taking nitric oxide daily and feel better than I have for years. BP is awesome now too.

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  8. I have had shortness of breath, worsening chest pain, shoulder (front and back), arm (both), clavicle (both), neck and jaw pain worsening since February 2013. Yesterday I was seized by hard chest pain radiating through to my back. I went to the hospital, and they knew I had a “slightly abnormal” lexi-scan, and slightly abnormal EKGs – all of them) so they sent me to a hospital where they had a cath lab. The doctor did a cursory cardiac cath, told me that I had 25% blockage in one of my main arteries, and a small amount in some of the lesser ones.

    “Congratulations! Your heart is fine”.
    They kept me overnight and even though I was still experiencing bad arm (rt side this time), shoulder, and neck pain, the nurse offered me Tylenol. The doctor came in today and asked how I was feeling and I said my symptoms are no different than when I came in here. He said, well, since there is nothing wrong with your heart, it’s probably just anxiety and sent me home. No further testing offered.

    I see my primary on Aug 2, who will actually listen to me and work with me and request a PET scan. I’ve had it with knowing there is something wrong PHYSICALLY with me, but being basically patted on the head and sent on my way.

    Thank you for sharing this information. I never would have known about this without it

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  9. I have had Coronary Spasms since I was 41 diagnosed by doctor then and at that time I did have the ST elevation. Last year was so bad 30+ a day chest pain was referred to Mayo Clinic.

    Mayo is treating for Endothelial dysfunction and Coronary Spasms. The Cardiac group that sent me to Mayo still has 2 doctors that still won’t believe the diagnosis even though the chest pains recreated 3x in cath lab and show the diagnosis.

    I was horrified yesterday when I had a followup after ER with the Cardio nurse in the doctors office to find that the treating physician here disagrees with Mayo now. It is a very big battle to get proper treatment and then to have a doctor flip and say he no longer believes the diagnosis and disagrees with Mayo. So waiting for a call from Mayo with a referral to another group of doctors in my area – may be 1 hour away but at least perhaps I won’t have to deal with doctors that are so far behind the times. I think Cardios should have refresher courses.

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    1. Sadly, I hear stories like yours far too often – it is absolutely appalling. I hope your Mayo doctors will be able to point you in the right direction to new physicians very soon. An hour’s drive is well worth the trouble if it leads you to quality care – but isn’t it a shame that the onus must fall on the patient, rather than on the doctors to educate themselves about this well-documented disorder?

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  10. 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

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  11. 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!!

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  12. 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

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    1. 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!

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      1. 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

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        1. 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.

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          1. THANK YOU!! for your story, it has given me so much relief . . . suffered symptoms for 15+ years; your story is so much mine! Thank you . . .

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        2. Bruce, as another man I can relate to your post so much. The suffering of my family makes me want to cry – not having a ‘legitimate’ diagnosis makes so much in our lives uncertain, and planning for anything difficult or even impossible.

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    2. 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

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      1. I was happy to see what you posted here although it was some time ago. Hope all is still well by taking your supplements. I, too, take all these plus quite a few more, but with these supplements and my daily walks & bike rides I no longer suffer any more spasms. I was diagnosed 6 years ago by having an angiogram. The artery went into spasm during the procedure or I probably wouldn’t have got a proper diagnosis. I, too, didn’t want to be dependent on a bunch of prescriptions, although I do always keep a little vial of nitro with me at all times just in case.

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    3. Dolores, this is late, late to the game, but you should know that many of us have pain, post cath (particularly if it is a provocative cath challenge test meant to make the endothelial dysfunction and vasospam occur). On the table, whilst the cath is inserted, they give you nitro via cath to relax the spasm that does occur. You may not have had that, or your heart may have been irritable due to the test. Also, many of us have post-test pain, particularly when exertion is part of it. It comes after the test, later, after all the observation has stopped!

      It’s normal to know that that the test must stop at some point, but tracking for an extended period post-test would reveal more data, I believe. I hope you have found some better help and are having some progress in treatment.

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  13. 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!

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  14. 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.

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  15. 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

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    1. 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…. 🙂

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  16. 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

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    1. 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!

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      1. 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!

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        1. 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….

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