The “handlebar gripping” cardiac symptom

by Carolyn Thomas       @HeartSisters

When the Emergency Department physician misdiagnosed my “widow maker” heart attack as acid reflux, I actually felt relieved at first.  I’d much rather have indigestion than heart disease, thank you very much. His confident misdiagnosis meant I was temporarily willing to ignore the obvious cardiac symptoms that had propelled me to Emergency that morning: central chest pain, nausea, sweating and pain down my left arm.

Even I knew that arm pain is NOT a symptom of acid reflux, yet somehow that first plausible answer seemed preferable to the far more serious real answer I would receive much later.      .      .

Helen Akinc, a Heart Sisters blog reader in Winston Salem, North Carolina, contacted me recently about a similar  experience she’d had – which turns out to be remarkably common among female heart patients: the tendency to accept the first plausible explanation for symptoms – even when it’s quite wrong.

Her own story illustrates this so well: (NOTE: for definitions* of some of the cardiology terms Helen uses, scroll down to the bottom of this page):

“For months – yes, months! – I have noticed that my left arm and shoulder started hurting about 30 minutes into my bike ride (or my rowing workout).

“My immediate reaction was I must be holding the handlebars too tightly with my left hand’ – and same thing for the rowing machine.

“Imagine my surprise when I took a walk in my hilly neighborhood and the same symptoms happened.

“No handlebars!

“So then I recognized those symptoms as probably being cardiac – and yes, now I have been diagnosed with coronary microvascular disease. (which had been suspected before).

“I know you’ve written about referred pain in women’s heart disease (arm, shoulder, neck, back, throat or  jaw), so I knew the cardiac connection – but since handlebar gripping was easy and plausible, I went with that cause.”

“I kind of wondered why I was always exhausted for several hours after each episode – but now I know.  I think some of us may have a built-in proclivity to go with the easiest and most convenient explanation.”

What Helen was describing is called minimizing, which is a predictable response whenever we try to ignore puzzling symptoms:

  • if we are afraid to take them seriously
  • if we hope they might just go away
  • if we don’t recognize them as being heart-related

Women’s cardiac symptoms can also come and go during longer periods of feeling “normal” between symptomatic episodes – just as Helen experienced when she wasn’t biking or rowing.

If symptoms do go away, then everything seems “fine”.  If they return, we just wait for them to go away again.  And sometimes women report “slow onset” cardiac events (instead of the dramatically misleading chest-clutching-falling-down-unconscious scenario we see pictured in the media). But these scenarios can be very dangerous because we tend to delay seeking appropriate treatment.

But unlike women who may try to talk themselves out of a cardiac possibility when puzzling new symptoms strike, Helen actually had good reason to suspect heart disease FIRST instead of last:  she was already a heart patient.

Back in her 20s, she’d been diagnosed with high blood pressure during her pregnancy (and we now know that women who experience hypertensive complications in pregnancy are at 2-3 times greater risk of developing heart disease than women who don’t have a history of pregnancy complications).

Helen did develop a serious heart rhythm disorder that was treated with a cardiac ablation* procedure. This provided her some relief for about nine months;  she then underwent a second ablation. But something went terribly wrong, as Helen explained:

“During the ablation, my heart was punctured, resulting in acute cardiac tamponade*, two cardiac arrests, and emergency open heart surgery to repair the tear. That surgery took place on a Wednesday and on Friday midday I came home.
Long before then, Helen had also had personal experience having her cardiac issues dismissed. Her family doctor, for example, listened to her heart one day, and interpreted the EKG he’d just taken as “okay”. After he left the room, the nurse lingered, took Helen aside, and told her:
.
“I could lose my job for telling you this, but that is not normal. You need to see a cardiologist. I’ve worked in the ER, that’s not normal, get it checked out.”
Helen did make an appointment with a cardiologist, who correctly diagnosed her heart rhythm issues. Much later, she happened to run into that nurse in the hospital:
.
“I thanked her for alerting me, and told her what had happened. But had she not taken a chance and told me, I don’t know where I’d be at this point.”
And yet when she was experiencing pain (for months) in her left arm and shoulder that was brought on by exertion/went away with rest – which is pretty much your basic definition of angina* – her understandable impulse was, as she now describes it in hindsight, to blame her symptoms on those handlebars.
.
Helen adds that most of her symptoms were “never really over the top; they seemed vague and nondescript.”
.
This is important because it’s surprisingly typical of how women may describe their cardiac symptoms: “Not that bad.”
.
Many women, in fact, can continue to walk, talk, think, go to work, drive a car, and walk into the Emergency Department on our own steam – even in mid-heart attack. So no wonder we doubt the severity of our own symptoms.
.
Helen’s story is a cautionary tale for women who would prefer to believe the less scary of all diagnostic possibilities:
.
“In many ways, I’m a very typical woman heart  patient, because nothing has been straightforward.
.
“But my cardiac history now makes people pay attention. And I pay attention, too, and I ask lots of questions. What’s most fortunate is that I have a really good cardiologist who listens and pays attention, too. He is much more receptive to my ideas and questions than many doctors that I’ve seen.”
Remember this:  you know your body. You KNOW when something is “just not right”.  Listen to that little voice inside. Ask yourself what you would do if this odd symptom were happening to your daughter or your sister or your Mum or any other woman you care about – and then take exactly the steps to seek the help for yourself that you would expect for them.
.
Please, take care and stay safe. . .
.
  • Cardiac Ablation:  A procedure performed by an Electrophysiologist (EP), a cardiologist with specialized training in treating heart rhythm problems. It typically uses catheters — long, flexible tubes inserted through an artery  and threaded up to the heart — to correct structural problems in the heart that are causing an arrhythmia (heart rhythm problem). Cardiac ablation works by scarring the tissue in your heart that is triggering an abnormal heart rhythm.
  • PVC – Premature Ventricular Contraction:  An early or extra heartbeat that happens when the heart’s lower chambers (the ventricles) contract too soon, out of sequence with the normal heartbeat.
  • Cardiac Tamponade:  Extreme pressure on the heart that occurs when blood or fluid builds up in the space between the heart muscle (myocardium) and the outer covering sac of the heart (pericardium).
  • * Angina:  A condition marked by distressing symptoms anywhere between nose and navel that come on with exertion and go away with rest, caused by inadequate blood supply to the heart muscle.
  • For more medical definitions, visit Carolyn’s Patient-Friendly Jargon-Free Glossary of cardiology abbreviations, acronyms and weird confusing terms.

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Q:  Have you ever had an experience like Helen’s in which you believed a less scary option before your final correct diagnosis?

Image: Rudy & Peter Skitterians, Pixabay

NOTE from CAROLYN:  The entire patient-friendly, jargon-free cardiology glossary (all 8,000+ words!) is also part of my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017).  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 the code HTWN to save 20% off the list price).

See also:

-Skin in the game: taking women’s cardiac misdiagnosis seriously

Same heart attack, same misdiagnosis – but one big difference

My medical diagnosis means more to me than to you

How we adapt after a heart attack depends on what we believe the diagnosis means

Looking for meaning in a meaningless diagnosis

19 thoughts on “The “handlebar gripping” cardiac symptom

    1. I want to thank you for publishing symptoms of a heart attack in women.

      I have been suffering from dual arm ache for weeks now and I’d been taking magnesium thinking the ache was the result of a deficiency. However, this matched with the fatigue and sleeplessness caused me to make an appointment to see my doctor who thought something was a bit off.

      I am seeing a cardiologist next week. Thank you.

      Liked by 1 person

      1. Glad you made that appointment, Sorby. Right now, it’s a mystery – may be heart related, may not be – but at least you listened to that gut feeling that something does not feel right to you. Please let us know after next week’s appointment if you do get an answer!

        Best of luck, take care and stay safe… ♥

        Like

  1. My angina occurs at rest, usually around 3am.The vice-like pain across my back to my chest wakes me from a deep sleep.After presenting my self diagnosis to a team doctor at Michigan State University Health Team, she laughed at me and said “you don’t have angina”.

    Four months later I was hospitalized with a diagnosis of Takotsubo Cardiomyopathy also known as stress cardiomyopathy or broken heart syndrome. I continue to have angina even with daily medication.

    Liked by 1 person

    1. Margee, I hate to hear that any healthcare professional “laughs” at any person who is suffering from distressing symptoms – no matter what the cause. I’m not a physician so cannot comment on your continuing angina, but I can tell you generally that something is causing this – you just don’t know yet what that is. Talk to your doctor about tweaking medication dosages or treatments to help you.

      Take care, stay safe… ♥

      Like

  2. I’m a 31 year old female and I have been to the ER several times with chest pains and I feel like no one listens to me!! I know my body!! They are trying to blame it on a psychological problem!! It’s not!! I can’t legibly feel my heart hurt with pain in my left arm and face tingling. My BP was 183/53 last time this happened and my heart rate was 178!! I can’t get help because in order to see a cardiologist I need a referral and my doctor won’t give me one!! I have the minimal amount of medical insurance and can’t see a different doctor!!

    Like

    1. Hello Britney – it would be surprising to me if people whose symptoms are dismissed or not taken seriously did NOT have “a psychological problem” – because that dismissal is of course psychologically distressing. I cannot tell you if your symptom are or are not heart-related. Right now, there are a number of known reasons for chest pain to consider (read this list) – meanwhile consider starting a Symptom Journal, e.g. record the date/time of each symptom, describe the symptom and what you were doing/thinking/feeling/eating in the hour or two leading up to the onset of the symptom. Often a pattern can begin to emerge in this journal that may help your doctor arrive at a diagnosis.

      Good luck, take care and stay safe… ♥

      Like

  3. This was very informative! Really causes one to think. I’ve had a history of atrial fibrillation since I was 35, I am now 69. I have had only one ablation, but I am constantly being advised to have another because I have had so many episodes since the ablation in 2015.

    I have noticed as I’ve gotten older, I now experience pain from time to time that I didn’t used to have, and also more PVCs, and doing this past year seconds of VTach from time to time.

    Always studying, striving to learn to become aware of what other options there are for me at this point in my life.

    Thanks again, I really appreciate this info.

    Liked by 2 people

    1. Hello Sister Carolyn (spelled correctly, I see!)

      Thanks for your nice note, although I’m sorry that you’ve been experiencing more symptoms lately. Please make an appointment with your cardiologist to discuss these issues, if you haven’t already.

      Turns out that it’s not at all uncommon for AFib patients to have more than one ablation procedure. Please read Dr. John Mandrola’s excellent post called 13 Things To Know About Atrial Fibrillation. Dr. Mandrola is an electrophysiologist (a cardiologist who treats heart rhythm problems like AFib, and also an experienced “ablation-ist” and – best qualification of all! – he has been diagnosed with AFib himself). He writes a lot about the pros and cons of doing cardiac ablations. A must-read for anybody living with any kind of arrhythmia.

      Take care, stay safe… ♥

      Like

    2. Sister Carolyn,
      I want to clarify something important. My first ablation was in 2009, the second in 2011. A couple of years ago my regular cardiologist referred me to an electrophysiologist b/c I was having some worrisome rhythms. The electrophysiologist explained that there have been significant advances in the equipment and safeguards used during ablations, resulting in much, much fewer accidents.

      For me, the electrophysiologist predicted I might need a third ablation down the road. Talking with my cardiologist and family doctor, our strategy is to try to manage with medication, not out of fear regarding safety of procedure but because I and my system (not to mention my family and friends) really can’t go thru that level of stress.

      I think ablations are amazing and felt markedly better after the first one. When the puncture happened, in March 2011, I was 58 and was told that both the odds of a puncture and the odds of surviving it were miniscule. I experienced both.

      If I were faced with the choice between high risk of stroke and minuscule risk of perforation, I would do whatever necessary to avoid that stroke. But you need to talk with your doctors and loved ones. If you decide to go for another ablation it is important to have it done by a physician who does many of these procedures and to be in a major medical facility with a high level trauma team. That can make a big difference if something goes awry. Good luck!

      Liked by 1 person

      1. Hi again Helen – cannot agree more with your suggestion that we should always request a physician who is VERY experienced in doing ablation procedures. Studies suggest, for example, that “patients who had an AFib ablation procedure performed by a physician who performed the procedure <25 times per year were twice as likely to have a complication compared to ablations performed by a physician with significantly more experience." Not surprisingly, as this article suggests, the link between experience and outcomes has been shown in many fields of medicine.

        P.S. Also why you would NOT want somebody like Dr. Oz (who apparently claims to spend one day a week in the O.R. at New York-Presbyterian Hospital doing cardiothoracic surgery when he's not working on his TV show) doing your own surgery…

        Liked by 1 person

  4. I agree. Strokes are to be mightily feared… my mother and many of her sisters all had strokes, which ultimately led to their deaths.

    That’s one reason I’m aghast when people talk about their hypertension but complain about taking medicine. I’ve also noticed that there is a significant difference between what GPs and cardiologists tolerate in blood pressure levels, regardless of what the current “official” cutoff is.

    But I think the handlebar gripping phenomenon is applicable to hypertension as well… because doctors as well as patients are apt to blame a high reading on “white coat” syndrome, or being stressed. or whatever.

    My current cardiologist who is a living saint told me once, “I don’t care if you are stressed or rushed or whatever, your blood pressure is too high” and he doubled the dose of meds.

    I think it often goes back to the same phenomenon of attributing a worrisome symptom to the first most convenient explanation. Maybe we need to start questioning our automatic answers. Although, I do need to emphasize and underscore the concern regarding awareness of women’s heart health. I know several women who have had heart attacks. One of them fought her doctor as she was highly resistant to BP meds for years. One had to convince the docs to check her heart enzymes. One had a really good doctor who paid attention. One died after she was sent home with “indigestion”.

    Instead of going with the first answer that might fit, maybe we need to adopt a pattern of identifying all that might be possible and consider what makes the most sense.

    Liked by 1 person

    1. Thanks for weighing in here, Helen – and thanks also for being the inspiration behind this post in the first place!

      I think that the reason high blood pressure is called the ‘silent killer’ is that if we faithfully take our blood pressure medications exactly as prescribed, we’ll feel fine. If we decide we don’t want to take our blood pressure meds anymore and stop them, we’ll feel fine. Right up until our stroke or our heart attack or aortic aneurysm or kidney failure or vascular dementia or retinopathy or sexual dysfunction or whatever other body part is being quietly damaged due to untreated high blood pressure, typically without any symptoms for years.

      It’s not even about taking drugs – we know that there have been remarkable improvements with the DASH diet for example (Dietary Approaches to Stop Hypertension, developed in 1992 by the National Institutes of Health) which focuses on eating less salt, plus eating more foods high in potassium, calcium, magnesium – shown to help lower BP.

      We know why women so often attribute their cardiac symptoms to non-cardiac causes (as you and I both did), but you’re so right about women also having to fight to have their symptoms taken seriously. Neither is a good way to get appropriately treated!

      Implicit biasis alive and well in cardiology, sadly – “You’re far too young to be having a heart attack” is what almost every woman still hears from the medical team if she’s having a heart attack caused by SCAD (Spontaneous Coronary Artery Dissection) which hits mostly younger women with few if any cardiac risk factors. But one of my male readers was also told the same thing during his non-SCAD heart attack – the Emerg. doc took one look at him (40-ish, muscular, super fit) and dismissed his textbook cardiac symptoms and his inconclusive diagnostic tests as ‘false positives’ based entirely on how the guy looked. As you say, wiser to go back to a blank slate with each patient – assuming it’s even possible to set aside implicit bias…

      Speaking of doctors, how lucky you are to have a “living saint” for your cardiologist!

      Take care, stay safe…♥

      Like

      1. I too have a living saint cardiologist. Just FRIDAY, I sent him an email about having some fluid retention issues after a trip to a higher altitude. He left a message that he was on call all weekend and that if it didn’t resolve with the extra lasix I had already taken to contact him immediately.

        He has always been available and listens closely to my take on symptoms because he says I am remarkably tuned into my own body. He’s retiring in 4 years and I will be hard pressed to find a replacement.:-(

        Liked by 1 person

        1. Wow. That is TWO living saint cardiologists today!! A new record.

          Just being able to email your doc with a valid concern and then to get a response would be a fantasy dream come true for many heart patients out there!

          Hope that fluid retention settled down over the weekend, Jill.

          Like

  5. Like Helen, I now have so many cardiac diagnoses in my medical history that if I show up with any suspicious complaint I get cardiac attention immediately.

    However, 10 years ago, my only diagnosis was HOCM (Hypertrophic Obstructive Cardiomyopathy) This disease, even when on the right medications, can cause intermittent chest pain, arrhythmias and fatigue.

    One week in November 2011, I was recovering from a cold which required treatment for my asthma with steroids and Albuterol nebulizers. Like any good nurse, I didn’t miss a day at my job in quality assurance. I even brought my portable nebulizer to work. I was feeling pretty punk and just having mild annoying chest pain, not unusual for HOCM.

    One night the chest pain was really bothering me so I took some extra medication for it. In the morning I checked my BP at home and it was 85/50, unusual for me but I thought it was the extra medication. I wasn’t dizzy so I went to work.

    About 2 pm my co-workers staged an intervention ….the words were “You look terrible, you are absolutely grey, you need to go see a doctor“.

    I thought, that’s probably a good idea, tomorrow is Thanksgiving and if I get sicker I won’t be able to see anyone. I walked to the doctor’s office, 2 blocks from the hospital where I worked. As soon as they saw my EKG they gave me a baby aspirin and called an ambulance to go Two blocks back to the ER.

    I was put on the time clock to get to the cath lab. I was not having ANY chest pain at the time but EKG and cardiac enzymes were very suspicious.

    It turns out that my coronary arteries were mostly clear( Only 30% Blockage in 2) but my left ventricle had blown up like a balloon, had a giant clot sitting in it and my cardiac output was only 30%. What I had was an attack of Stress Cardiomyopathy (Takotsubo Syndrome). I spent Thanksgiving in the hospital, and was lucky that it did not progress and went home on anticoagulants.

    The toughness and resilience that we super women like to claim can indeed get us into deadly trouble.

    Thanks Carolyn for your ongoing efforts to wake up the public and health care communities to women’s heart disease!

    Blessings!

    Liked by 2 people

    1. Good grief, Jill. Luckily, your astute coworkers staged an intervention, and also lucky that you agreed to follow their advice (especially given that it was Thanksgiving coming up: one of my readers told me that she once had alarming cardiac symptoms on Christmas Eve; when her son intervened and told her she had to call 911 right away, she refused, explaining, “I have 12 people coming for Christmas dinner tomorrow! I can’t go to the HOSPITAL now!!!” )

      You probably felt as terrible as you looked that day, but (as women tend to do!) you dragged yourself to work anyway and chalked up your worsening symptoms to your meds.

      Take care, stay safe! ♥

      Like

      1. Of course I asked to watch the screen during my cardiac Cath LOL… what scared me the most was seeing that giant clot sitting in my left ventricle and knowing the very real possibility that a piece could break off and cause a stroke.

        I think I fear a stroke even more than I do a heart attack.
        I thought they would just suck that clot out! But no, alas, they just send you home on blood thinners and it eventually just goes away.

        Liked by 1 person

        1. I’m with you, Jill. Both diagnoses are cardiovascular events, and both are frightening when they happen, but there’s something about having a stroke that I fear, too. Maybe it’s because I’ve already survived a heart attack – fear of the unknown?

          Like

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