Misdiagnosed: women’s coronary microvascular and spasm pain

~ Carolyn Thomas

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:

UPDATE November 2019:  Diagnostic tools used to identify coronary microvascular dysfunction

UPDATE March 2021: International Heart Spasm Alliance website

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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 originally published May 8, 2014

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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.  See also: Mast Attack by microbiologist Dr. Lisa Klimas who has written on Mast Cell Diseases and Kounis Syndrome.

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

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

 

See also:

UPDATE November 2019: Diagnostic tools used to identify coronary microvascular dysfunction

My Love-Hate Relationship With my Little Black Box

“I Rang the Bell Again. No One Came.”

How Women Can Have Heart Attacks Without Having Any Blocked Arteries

Coronary Microvascular Disease: a “Trash Basket Diagnosis”?

No Blockages: Living with Non-Obstructive Heart Disease

When Thyroid Problems Masquerade as Heart Disease

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MUST WATCH VIDEOS:

Conference speakers (11 expert presentations, about 20-25 minutes each) attending the 2019 INOCA “Meeting of the Minds  meeting on non-obstructive coronary artery disease in London, England in this fantastic series of videos.

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NOTE FROM CAROLYN:   I wrote more about non-obstructive disorders like coronary microvascular disease in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).

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Published by Carolyn Thomas

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

  2. I just experienced my 3rd heart attack due to small vessel disease. The first two involved one vessel. This last one involved 3. I had one angioplasty and some heart damage because the other two vessels were completely blocked with blood clots and it took hours for medications to open them.

    I am on a Nitro patch and 6 other medications. I was 55 at the time of my first heart attack and 60 now.

    I went through early menopause at 32.

    Liked by 1 person

    1. Third heart attack due to small vessel disease – so much for the common medical reassurance that microvascular disease is “not dangerous”. Thanks for sharing your experience here, Edyie!

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  3. Carolyn, thank you for suggesting that I consult my pharmacist. You’re right – they are an often overlooked resource. As I am on 15 medications, I seem to be there every other day getting a refill and they know me well! I will definitely take the time to talk to them. Thanks again and thanks for the link.

    Liked by 1 person

  4. It was helpful to read everything that was posted here. After being diagnosed with anxiety by a male cardiologist, I sought a second opinion at a women’s heart center in New York City and received a diagnosis of coronary artery spasms and was put on the proper medication.

    The doctor said that they no longer test for it with ergomine testing because it can result in death, but because I have migraines and due to my history, this diagnosis is probable. She also said that it’s possible that albuterol which I use a lot for my chronic obstructive asthma can provoke a spasm, but she didn’t tell me to stop. I also read that sumatriptin injections which I use as an abortive medication for my migraines is contraindicated, so I have to ask my neurologist about that.

    I feel relieved that I finally got to the bottom of this, but concerned about all these chronic illnesses on top of one another, and the fact that these medications seem to be contraindicated.

    Liked by 1 person

    1. Andrea, yours sound like a ‘good news, bad news’ story: good news that you have a diagnosis, but bad news to discover that some of your meds might no longer be appropriate.

      On top of consulting with your neurologist and other specialists, I’d also suggest making an appointment with your local pharmacist to discuss medications and contraindications. These health care professionals are often-overlooked resources, and know far more about drugs that many physicians do – not only the effects of individual drugs, but also about drug-drug interactions that can affect your health. Best of luck to you…

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  5. Hi everyone – well, last week I had another trip to the ER with them sending me away. I woke up early, got ready for work, and went to work having chest pain all day long. It was totally different then my normal pains. It felt like I had an elephant sitting on my chest. I had it all day long until I couldn’t take it anymore.

    I left work early to go to urgent care and get an EKG done. My EKG again showed as abnormal with myocardial ischemia and once again I was transported by ambulance to the ER hospital nearby. After all the IV’s, more EKGs showing the same, and blood tests coming back as not having a heart attack, they sent me home. My cardiologist was the one on call; all she said was maybe I should increase my Diltiazem. But that lowers my blood pressure which causes even more symptoms.

    I completely stopped drinking caffeine of any kind and that has helped a lot so far. I know caffeine is a vasoconstrictor even though I only drank one cup in the morning and that was it.

    I am still having pains but not as bad. I have good days, bad days and horrible days. I think if I continue to have such pain, I am going to have to get the reactivity testing. The only place that does it here is in Dallas, but I am willing to do it so I can find out exactly what is going on. I really need to know.

    Liked by 1 person

    2. Hi Renee,

      I am on Diltiazem too — it helps with my shortness of breath so much (I have low blood pressure too). So, when I have symptoms — this is a choice: to be short of breath & in pain and with normal BP, or to have everything opposite. What a game…

      Do you have any other symptoms except pain? I think it’s a good idea to ask your GP for cardiac MRI referral. I am sure they did not check your blood twice at ER. I mean, they had to check it for Troponin if only every 6 hours about three times to rule out a MI. Also, it is necessary to do a BNP blood test. I bet they did not do this too in your case. You can ask a referral for these tests too. Also, the doctors will see any signs of past heart events on your cardiac MRI even if the ER “rules it out”. MRI can show scars, heart muscle damage and injury.

      Mio

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      1. Thank you so much! I did not know about the MRI – I will definitely ask for that. You are right also, they only checked my blood one time and sent me away – it’s very frustrating.

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    3. So I found out there isn’t a place here in Texas to do the reactivity testing. I did have an apt with my cardiologist yesterday and I was able to get an event monitor for 2 weeks so hopefully this will show what is really going on. My dr swore to me that all my pains couldn’t possibly be heart related and that there was no way I could have a heart attack because there is no blockage at all. I really hope she is right. I have recently given up caffeine completely and my symptoms have decreased a lot which is good. I still have pains just not as severe as before. But this disease always surprises me. I am trying to lower my stress level and my pcp put me on paxil once a day. I hope it helps. Recently I have had some new symptoms appear in my sleep. My heart flutters like I have butterflies in my chest it wakes me up out of my sleep. It’s only happened twice but still it scared me.

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      1. Renee –

        I have read your posts. It sounds like you are having microvascular ischemia which is a diagnosis that is very often missed and not every physician is aware of. When patients present with chest pain the focus is on MACROVASCULAR ISCHEMIA which shows up easily and clearly on an angiogram.

        Microvascular ischemia cannot been seen on angiography. Often, if the patient has chest pains and the angiogram is negative, then heart disease is often dismissed as the cause and the focus shifts to something else like anxiety or chest wall pain.

        Recently there has been more focus on microvascular disease and cardiac Syndrome X which, as another reader pointed out, requires reactivity testing for correct diagnosis. Microvascular ischemia can cause heart failure, heart attacks, sudden death and arrhythmia. Your flutter is most likely caused by paroxysmal atrial fibrillation, a heart rhythm abnormality that can come and go every so often. Another indicator that you have heart disease.

        The treatment for microvascular angina is often unsatisfactory. The pain can last for hours or days. The best drugs are beta blockers and calcium blockers but only those that lower the heart rate like diltiazem. Any cardiac drug that increases the heart rate will likely trigger chest
        pain including nitroglycerin.

        The bare truth is, microvascular ischemia gets no attention because there is no money in it (yet). Stents cannot be used as treatment. Pharmaceutical companies are more interested in large vessel disease because a single stent can cost over $10,000. The companies (and some doctors) follow the money and not the patient. Sometimes a patient has to take matters into their own hands . The doctor that reassured you that it is not your heart despite the EKG changes, needs to go back to school.

        Good luck and I hope this was helpful.
        Dr. John

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        1. Dr. John, that’s a pretty distressing assessment that medicine is not incentivized (financially) to take MVD seriously.

          Just curious: what diagnostic tool would you recommend for Renee and others like her who have NO ACCESS to reactivity testing?

          It’s virtually impossible (and not recommended!) for you to make any kind of definitive medical diagnosis online based only on a blog reader’s comment.

          One point re your nitro comment (“will likely trigger chest pain”): the opposite is true in my own case (severe refractory angina due to MVD). Short-term nitro spray is my best friend, would never, ever leave home without it. In extreme cases of chest pain, time-limited nitro drip in hospital has also been successful for some MVD patients. Dr. Bairey Merz at Cedars Sinai in L.A. routinely recommends nitro for her MVD patients.

          Nitro and my TENS therapy allow me to function with MVD (TENS recommended by both my cardiologist and my Pain Specialist at our local heart hospital (who did a fellowship in Sweden studying coronary microvascular disease – luckily for me!)

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          1. Microvascular ischemia can be very unpredictable both in terns of symptoms and response to therapy. So I am not surprised that in your case nirto works. In general, anything that causes an increase in the heart rate, ( which results in an increase in oxygen consumption by the heart) will worsen the ischemic pain. This is the exact opposite for MACROVASCULAR ISCHEMIA where nitro is of course , very helpful. Some people have both microvascular and macrovascular ischemia ( having one does not exclude one from having the other as well). This is another reason Nitro may be helpful . And yes, I agree that TENS therapy can help but i am opposed to spinal cord stimulation as a treatment, because this simply masks the pain and does nothing to improve the ischemia which ultimately is the cause of the pain. My opinion is that spinal cord stimulation can be dangerous because the ischemia is present and do harm to the myocarddium but yet the patient does not senses this. The pain is there to remind the patient that there is a problem here and to ” dumb the pain simply defeats the purpose. The pain serves as an early warning system for the ischemia and the SCS removes this warning. It is like turning off an airplane’s altitude warning system when flying near Mount Everest. Ok, enough said, i wish you the best.

            My comment was for Renee.

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            1. I understand that your comment was for Renee. But since this is my blog, I feel compelled to quickly interject whenever anybody (doctor or not) offers my readers here an online medical diagnosis.

              I can also add (as a patient who does live with the daily pain of refractory angina that has not responded to beta/calcium channel blockers or standard cardiac meds prescribed for MVD) that “masking the pain” is what all pain patients desperately seek.

              If there actually were in fact a way to address the ischemia that originally causes the pain, then of course we would be thrilled to try that option. But in the meantime, we must take what we can get simply in order to function – and for my cardiologist and pain specialist that may well include a SCS implant some day should my TENS/nitro combination fail to offer adequate relief.

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        2. I have had a few other people tell me they think I have MVD as well. I did order an event monitor and I wore it for a week. I am going to get my results this friday and I will let you all know what they show. I did have a few flutter episodes while I was wearing it as well as my heart rate jumping to 120 bpm just sitting on the couch. I am hoping this will show my Dr that it is my heart and not all in my head. I have also been put on anti-anxiety meds to lower my stress levels because they are a huge trigger for my spasms.

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          1. Hi Renee – right now, it’s impossible to know for sure what your diagnosis is. It may be microvascular disease – or it may not. MVD is not picked up via EKG, so your Holter monitor (while it may capture flutter and pulse variations) would not likely help to identify MVD. Best of luck on Friday…

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            1. Thanks Carolyn. My main thing why I wanted the event monitor was to see if I am always in an ischemic state or only when I am having the attacks. The Dr’s seem to think I am constantly ischemic but that was not always the case before all this started happening to me. My EKG’s used to be totally normal.

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              1. I got my results today and good news! I am not always ischemic. It seems to be only when I am having bad attacks. My results showed I have Sinus Bradycardia (slow heart rate) and PVCs (Premature Ventricular Contractions) but otherwise, it looked good. My Doctor increased my Diltiazem to 180mg instead of 120mg and she referred me to UT Southwestern Medical Center in Dallas for further testing. She still swears there is no way I can have a heart attack from this. I asked about the Microvascular Disease; she said if it is that, there is no way to test for it so she still has me as a diagnosis of Vasospastic Angina. I am hoping I can get some better answers from UT Southwestern since they have more experience with this.

                Liked by 1 person

                1. Great news about your referral for further tests at Southwestern, Renee! – one step closer to solving the mystery. Meanwhile, you might also be interested in learning more about your PVCs: e.g. “In an overwhelming majority of patients, especially those with a structurally normal heart, PVCs are benign. The word benign means the extra beats do not indicate heart disease or predict sudden demise.”

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                  2. CAROLYN’S NOTE: This reader’s comment has been deleted because its unsolicited and anonymously submitted online medical advice has now expanded to include criticism of a patient’s physicians (the ones who actually do have access to the patient’s medical records)

                    Dr. John, if you insist on continuing to dispense your unsolicited medical advice online, why not consider starting your own blog under your real name with your professional credentials and liability coverage disclaimer clearly itemized?

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                  3. I had another attack today at breakfast. I was with my family out to eat and all of a sudden I got very sick, my heart was pounding, I started sweating and my chest and left arm were hurting. I had to go home and lay down for a few hours. I still do not feel very well. I have had these symptoms many times before but always dismissed as not having a heart attack. I am going to demand to be kept overnight for observation next time I have to go to the ER.

                    I am also starting to have a weird new symptom of muscle twitches. It comes on randomly it feels like I have pulses in strange places in my body and sometimes my leg will twitch and move a little like jerk real fast. I do not know if this is related to my prinzmetals or not. I have made a list of all my symptoms to give to UT Southwestern when I actually get in there. (Still waiting)

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      2. Everyone, I am so glad I came across these posts! I have been through several heart tests the past several years, and like many of you have said, symptoms of irregular heartbeat and tightening of the chest… But always passed the stress test and no blockages. And I’ve experienced over the past couple of weeks being woken up with my heart fluttering so fast and short of breath that I thought I was having a heart attack!

        I’ve been extremely exhausted and wear out fast during the day. Did anyone else experience clamminess or sweating? I had a pulmonary test done yesterday and now they say my lungs are of someone that’s 10 yrs older than I actually am. Gave me an inhaler to sample. I read the side effects….warning of possible death if you have thyroid or heart problems which I have. Why would my Dr. do that? I have sleep apnea and use a CPAP machine….which could be detrimental to my lungs, but detrimental to my heart if I don’t use it! Up until this year I would consider myself a pretty outgoing active person… But now I don’t have the energy to get done what I want! I know I’m rambling but I’m desperate. I want to feel better! Thanks everyone… Lots of good information. God bless!
        Faye

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  6. Please, I need your advice, somebody living on the West Coast… I have read the article, it is really helpful… But it seems I am in the middle of my “adventures”. My situation is even more hopeless than described in the article. I have abnormal cardiac tests – not normal at all. My ECGs are 3 from 5 like “consider inferior ischemia and ST changes”. My stress test was positive (ST changes). I have cardiac symptoms (classical + awful shortness of breath). My Dad passed from sudden cardiac arrest at the age only 5 years older than I am now. I was diagnosed with myocarditis. And my new cardiologist says that widely known phrase: “This is not your heart. You are too young”. and refuses to consider any possibility of any other cause except massive artery blockage. I was unlucky to experience general angio — and he was happy to kick me out of his office.

    I feel really helpless. I have three delightful kids, and a loving husband. I am successful at work. But my symptoms do not want to go away “by themselves”. I am ready to go out of the country to seek help, even paying for this help.

    Honestly, there is something very wrong. We pay our premiums for the best standard health care. But we do not get it and have to look for it in a different country.

    Please, somebody who has experienced similar situation — I will highly appreciate your advice/thoughts/ideas or even a good word.

    And dear Carolyn — thank you so much for everything you are doing for us.

    Take care and have a wonderful day all!

    Liked by 1 person

    1. I’m sorry you’re experiencing these distressing symptoms (while being dismissed by your new cardiologist as “too young”). I’m not a physician so cannot comment on your specific case. But you do seem to have abnormal diagnostic tests and at least one cardiac diagnosis (myocarditis, an inflammation of the middle layer of the heart wall) which could account for your shortness of breath. While this condition does often clear up on its own, there IS treatment available depending on the underlying cause. The point is: SOMETHING is causing your symptoms, and whether these are heart-related or not, you need to find a doctor who will help you determine what’s causing them, and then come up with a treatment plan. You don’t say what country you’re in; if you’re on the west coast of the U.S., I’d consider getting a referral to the Barbra Streisand Women’s Heart Center at Cedars Sinai Hospital in Los Angeles. If you’re in Canada, the Leslie Diamond Women’s Heart Health Clinic at Vancouver General Hospital would be a place to start to seek a referral (phone 604.875.5389). You need a second opinion. Best of luck to you…

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      1. Dear Carolyn, thank you very much for your answer! I am in Canada. Do you know which tests should be performed to exclude microvascular disease? I have asked my doctor to check it out but he “does not know the names of these tests”. Leslie Diamond Women’s Heart Health Clinic in Vancouver needs a referral from my doctor to see me. It is closed circle…

        Good luck to you too..

        Liked by 1 person

        1. I just sent you an email about this, too. You can ask your doctor to refer you to the Leslie Diamond Centre in Vancouver. While you’re talking to him, tell him that the MVD test he’s wondering about is called Coronary Reactivity Testing, as Dr. Noel Bairey Merz at Cedars Sinai mentions in this article. This test is available at Vancouver General Hospital (so far the only hospital in Canada that performs it). Good luck…

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  7. When I received this email and began reading, tears started to fill my eyes. It felt like you were talking about me. I have Spontaneous Coronary Artery Dissection (SCAD) and constant angina symptoms.

    If I’m going to be somewhat active, I have to take nitroglycerin just to get thru the task. I had to push my primary for a second opinion from a cardiologist because the 1st one wrote me off with not having coronary-caused chest pain. The 2nd doctor admits to having no experience regarding SCAD but is willing to help me. Out of the blue the 1st cardiologist calls 2 months later to tell me I may have Coronary Microvascular Disease (MVD), then asks what do I want to do???? Um Get well!!!! Duh..lol to keep my sanity…

    So after changing my primary, I’m waiting on following up appts for treatment plans. I ordered copies of my angio and CT pet scan. Angio shows small curly veins in and near circumflex where my cardiac-caused tear was and LDA. Pet scan determined I have a 0 calcium score, a PDA (patent ductus arteriosus) and a possible tear in my RCA that could not be ruled out… It was diagnosed as a smudge. The PDA never mentioned. Received raves for the calcium score and scolded because I wasn’t as elated as the doc was…

    I’m 51 years old and quality of life has just deteriorated. I am so grateful for you, Carolyn. For having the courage to bring this issue out. I will be putting together a report for my primary and cardiologist and hope they accept it and read it. Maybe it will help someone that comes along after me with same issue.

    Liked by 1 person

    1. Thanks Mary – it’s hard to be “elated” even in the face of zero calcium scores when one lives with “constant angina symptoms”. I too live with refractory angina, and your preventive nitro dosage is exactly what I do as well. I met a woman at Mayo Clinic who had been a competitive tennis player before her heart attack – she’s the one who first encouraged me to stop thinking of my nitro spray as a remedy only AFTER the chest pain has become unbearable! She stops halfway through each tennis game for a nitro spray, waits five minutes, then she can complete the second half. Planning ahead. Pioneer cardiologist Dr. Bernard Lown says the same thing. Good luck with your report for your doctors – an important start!

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  8. What a relief to find this article and these comments!! I had to cry like a baby. Have been living with severe s/s for over 15 years . . . been to ER multiple times with all the same unkind treatment: after multiple heart meds, anti-anxiety meds, anti-depressant meds (none of which worked, but indeed much worse off), I gave up . . . have finally diagnosed myself!! Undoubtedly MVD . . .

    Now onto the unrelenting search for the right MD and relief . . . thank all of you for the suggestions.

    Liked by 1 person

    2. I am on statins, high cholesterol, 57 years old, CT angio shows blockage is mild. After years of ER visits, the chest pain I am told is not from heart, only happens at rest…wake up with chest pain in the mornings, I can hardly move for about 20 minutes. Could I have this, how does the spasm feel? My upper chest hurts to move, if I don’t move a muscle or breath deep, it is okay; if I try to get up, it hurts. Does this sound like the MVD? Have had chest pains for years….first time this year upon waking…they say my stress test was false positive./ iDEAS./

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      1. Eva, I’m not a physician so cannot comment specifically on your situation – except to say generally that chest pain due to coronary artery spasms or small vessel disease often does occur at rest unlike the more frequently seen obstructive coronary artery blockages (pain on exertion, relief with rest). Please get a second opinion.

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  9. I am in so much turmoil and frustration. Finally diagnosed with coronary pulmonary spasms, without being tested mind you, and put on Adalat 60mg only to have chest pain worsen. Went to ER where all tests came back normal and told to see cardiologist. Very unsure what to do next, still experiencing pain, waiting to hear from the doctor……what tests should I be asking for?

    Liked by 1 person

    1. Hello Caroline – re-read the last paragraph of this post (Diagnosing non-obstructive coronary artery disease) – this may help you decide what diagnostic tests to ask your cardiologist about. I’m not a physician so cannot advise you specifically on your case, but I can tell you in general that if you are being prescribed a drug for symptoms that are getting worse on the drug, you need to go back to whoever prescribed that drug and report this, and discuss a change in drug or dosage until you are appropriately treated. That referral to see a cardiologist sounds like it was good advice from the ER doctor – please follow up and best of luck to you.

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      1. I am 38 yrs old and was recently diagnosed with Vasospastic Angina. I tried for the longest time to get help with my situation. It was getting worse and worse and after numerous trips to the ER only having them say nothing was wrong it was extremely frustrating.

        I was finally able to find a good cardiologist who ran some tests such as the stress and echo which of course was normal and the CT angio also normal. My pain was so bad I had to leave my job for 2 months and I was having pains every 5 minutes. It felt like I was having a heart attack every single day but I wasn’t. After some trial and error of medications and dosages I finally found a plan that works great for me. I am on 120mg long acting Diltiazem which I take once a day for the spasms and I have to take 4 fludrocortisones with 2 salt tablets every day with lots of water. I have hypotension which means my blood pressure is very low this keeps my blood pressure normal. It’s a balancing act because the Diltiazem lowers it and the Fludrocort raises it along with the salt. I also drink a protein shake a day. This has helped me to be virtually almost pain free. I do have the occasional spasm but not nearly as bad as before. I can actually live a normal life now and I am so happy I found a solution for my problem. I hope this helps you.

        Liked by 1 person

      2. Oh thank you so much for taking the time to respond. I am crying as I write this…. I finally heard from my cardiologist and she is simply taking me off the Adalat 60mg with no further medication suggestions, and told me to go to the hospital if the chest pain continues and follow up with family Dr.

        I am back to square one, even though she told me I have coronary artery spasms. I feel so defeated and at a loss….the ER doctors do not know how to treat someone with spasms.

        Thank God you have this website for support and information. I guess I will make an appointment with my regular Dr as the chest spasms are daily.

        Liked by 1 person

        1. Hi Caroline – that’s so discouraging that your cardiologist took you off meds “with no further medication suggestions” for your spasms. Adalat is in a family of drugs called calcium channel blockers; others include Norvasc or Procardia or Caduet among others commonly used for vasospasms – ask your family doctor to discuss the pros and cons of each type. Sometimes, if one drug in a family doesn’t work, another similar-but-different member of the same family might. Other meds used for vasospasm include the long-acting nitrates (a “vasodilator” like nitroglycerin that help to widen blood vessels). Daily chest spasms should NOT be dismissed, ever. Make that appointment with your regular doctor and insist on discussing treatment options to help you. Do NOT give up until you get help in solving this mystery.

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          1. Hi Carolyn,
            I followed up with my regular doctor and I am trying nitroglycerin patches. She is also willing to refer me to a new cardiologist who performs coronary reactivity testing if I can find one here in Ontario. Would you happen to know of any doctors here in Toronto who perform the testing by chance? My current cardiologist says it’s too risky and won’t do the test. She is the one who is guessing that I only have vasospasms…..I’m not prepared to live according to a “guess”.
            Any information is greatly appreciated and insight welcomed.
            Thank you.

            Liked by 1 person

            1. Great news about the nitro patch – I hope that begins to address your symptoms. I’m not familiar with Toronto cardiac diagnostic centres, although you could probably start with either Sunnybrook or the Peter Munk Cardiac Centre. I do think it’s a bit odd that your doctor seems to expect you to track down somebody who does coronary reactivity testing. My guess is that it’s far easier for physicians to get this info about experienced professionals via their own peers than it is for a patient. In any case, best of of luck to you…

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              1. Once again thank you for replying and yes I agree with you, it is odd that I have to find the physician. It is a daunting task and thank you for recommending Sunnybrook or the Peter Munk Centre; I have actually been looking on their websites.

                This whole journey has been exhausting and I can relate to so many of the other women on here. I don’t understand why it’s so hard to get treated with respect as a woman with chronic chest pain who doesn’t “fit” the normal cardiac testing process.

                Thank you for this website and your dedication.

                Here’s hoping that the nitro patch helps!! And that I can find a physician…..I will try but if I can’t, I will tell my doctor that it’s up to her…

                Thanks again!
                Caroline

                Liked by 1 person

                1. Well so far no one has even heard of “reactivity testing” in Toronto….I will keep searching but I am having an angiogram done in the meantime.
                  I’m shaking my head…

                  Caroline

                  Liked by 1 person

                  2. Hi Carolyn,
                    Well I’m updating you on my progress and it isn’t great. I met with a second cardiologist and was told again that nobody does the reactivity testing because the arteries spasm anyways during an angiogram. I never did get an angiogram, I was denied. I was also denied a holter moniter this morning which another cardiologist wants to put on me, but this one didn’t see it necessary.

                    Still having daily chest spasms so my nitro patch was increased to .4. Today the Dr. said double it and if it doesn’t help then your spasms aren’t heart-related. Feeling so frustrated and confused by our healthcare system. Now I really don’t know what or where to go. Will double the dosage of the patch and hopefully respond well…..if I don’t I don’t know what I’m going to do. Any suggestions?

                    REPLY FROM CAROLYN, June 16th, 2:07 pm: Can’t respond in a separate reply to your comment, Caroline – this site allows a max of 10 “nested” replies per comment, so if you respond to this, do so by starting a new comment, okay?

                    Now, here’s my reply: “Oh no!” This is confusing and distressing for you. I do hope that the new nitro dosage does help address your symptoms. If not, please return to your GP – who is like the quarterback of your health care team. If, as the second cardio suggests, this might not be cardiac-related, your GP is the one who will refer you elsewhere for help. Learning to suffer in silence or ignoring symptoms is not an appropriate option. Best of luck to you…

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  10. I was diagnosed with diastolic dysfuntion, with preserved EF with concentric hypertrophy. I was just hospitalised with a lot of pain on my chest, upper and under my breast. My skin is very sore and the pain goes to my back and left arm. It starts Saturday night and early morning. ECG shows nothing. Dr prescribed anti depressants. I don’t know what to do. Will see cardiologist on the 22 of April after waiting for 4 months to see him.

    Liked by 1 person

    1. I’m glad you’re seeing a cardiologist soon to discuss a treatment plan, Fatima, although it’s distressing that you’ve had to wait so long. If your symptoms worsen, do not hesitate to return to Emergency.

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  11. I’m surprised there is no mention of Kounis Syndrome – coronary spasms caused by a mast cell reaction to high histamine foods or aged foods.

    This kind of Prinzmetal’s angina can be controlled (somewhat) by diet (eating low histamine foods to avoid reactions) and by lowering the amount of tyramine in your body – these patients are unable to clear tyramine, which causes adrenaline, in your body, same as patients taking the old antidepressants, MAO inhibitors. Also you will find that coronary spasms/mast cell patients often have a combo of three diseases – hyperadrenegic POTS, mast cell activation disorder and Ehlers Danlos syndrome. Also … every time I’ve gone to the ER with Prinzmetal’s angina, I’ve had blood work that SHOWED HEART ATTACKS. I’m not understanding why most of you didn’t.

    My events are stopped or reduced, often cold, by taking benadryl and atarax (another antihistamine), along with the nitro, which never seems to stop anything but lower the pain. When they are not stopped, I am usually having a hypertensive crisis (part of the hyperadrenegic POTS) contributing to the spasms – so I get on an alpha blocker drip in the cardiac ICU (dangerous drug most hospitals don’t use in the ER) which blocks adrenaline – this stops the hypertension AND the spasms.

    I would urge all of you to google Kounis Syndrome and Mast Cell Activation Disorder relative to your Prinzmetal’s angina.

    And fire the doctors that tell you your Prinzmetal’s angina is nothing – I had a PA tell me that it was no more significant than a broken fingernail – my husband says “Does she have heart damage from this?” The PA said yes. My husband then let her have it! Sadly, she got mad and then tried to release me with BP of 200/120 – I refused to leave but the hospital was little help UNTIL I found a cardio that read my Kounis Syndrome material.

    Now I have a letter from the head of the biggest teaching hospital in my city of 6,000,000, who is now my cardiologist, explaining the condition(s) and appropriate treatment – which does NOT include telling me it is nothing!

    Liked by 1 person

    1. Thanks so much for this reminder, Ellie. Here’s a link to more information about Kounis Syndrome (a paper written by Dr. Nicholas Kounis)

      Dr. Kounis calls this syndrome a “a pan-arterial monster”, and cites potential allergies to a number of things from bee stings to drug-eluting stents (possibly due to the nickel, polymer coating, or the impregnated drugs that applies continuous, persistent, repetitive and chronic inflammatory irritation to the coronary artery). Ironically, even Plavix (clopidogrel) – the antiplatelet drug given to prevent stent thrombosis – has been (rarely) found to itself induce stent thrombosis in Kounis Syndrome patients. I’m adding a link to the resource list on this post, thanks to you.

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  12. I was just diagnosed with this last week. Thank you for the wonderful information.

    I have been complaining for about 4 years. About a month ago, the pains became excruciating. I’ve been to the hospital 4 times thinking I was having a heart attack. Finally had an emergency angiogram, which showed I have beautiful clear arteries.

    I am fifty years old, was running/walking 13-17 miles a week, doing Pilates 2-3 times a week, and I’m a vegetarian. One nurse after the angiogram made me feel so stupid. Your heart is fine! There’s nothing the matter with it.

    It made me feel like I was going crazy! I’ve had a panic attack before and this was nothing like it!

    I’m going back to the hospital to educate them. Telling someone their heart is fine when it’s not can have serious consequences for the patient (and the hospital…ie lawsuit!)

    Thank you for sharing your stories and hope! I believe I was led to this site, so I wouldn’t feel so alone! Thank you ladies and thank you Jesus!

    Liked by 1 person

    1. Four years is a long time to complain without knowing what’s wrong, Jill! So glad you’ve finally been diagnosed correctly. Thanks for your kind words.

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  13. Hi I was recently diagnosed with Vasospastic Angina. I guess it’s also called Prinzmetal’s Angina or Cardiac Syndrome X. I have been reading all your posts and I suffer these exact same symptoms. I went through the stress test, the CT angio, the echo all normal. Only thing that’s ever “abnormal” are all of my EKG’s they show Myocardial Ischemia.

    My PCP basically blew me off saying it was stress and anxiety but I finally found a cardiologist who takes me seriously and probably only because she has 4 other patients with the exact same problem. (makes you think) I am on Diltiazem long acting and fludrocort to keep my blood pressure up. I have extremely low blood pressure and was told to go on a high water intake high sodium diet.

    I have been doing all these things and I was fine for 2 weeks until I had my CT angio last week. Now the spasms are really bad. I don’t understand how they can constantly say it doesn’t affect the heart when it’s causing such severe pain! I have been to the ER twice for this and the same thing they just brushed me off, said I did not have a heart attack and that was that. This is so frustrating I really need to figure out how to stop these spasms. I know cold is a huge trigger for me.

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      1. So sorry to hear of your recent experience, Renee. Please call your cardiologist to report this increase in spasm pain. If she has at least four other patients with the same diagnosis, she’ll likely have more experience than many ER physicians do in managing this condition. Coronary spasm is fairly common during an angiogram but severe pain should not be continuing for two weeks following the procedure. Meanwhile, remember that nitro is your friend. Read this for more info; you might be a candidate for a nitro patch but while your symptoms are this bad, ask your cardiologist about other options; some Prinzmetal’s patients have found relief with an I.V. nitro infusion (done in hospital).

        Liked by 1 person

    2. I spoke with my doctor and the problem was my fludrocort wasn’t high enough so she raised me up to 4 a day; 5 is max. This seems to have helped dramatically. I was only taking 3 before; the difference between 3 and 4 made a huge difference.

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