by Carolyn Thomas ♥ @HeartSisters
“It’s 2 a.m. and I think I might be having a heart attack. Right now I have a tight chest and pain in my left arm and in my elbow that comes and goes; early this week, I was having pain in my left and right legs. What should I do?”
♥
“I’m sitting in bed and have been up for hours. For four days, I have been having upper right back pain up to the neck. I cannot turn my head left. Tonight I have pain in my elbow and a tingling all the way down my right arm and to my fingers. I’m only 29 and a healthy weight. I need some answers. Do I need to go to the ER?”
♥
“I have most of these symptoms. My mom thinks I’m fine. I really think she doesn’t understand. I can be heading to a heart attack any day soon. And I’m only 14, almost 15 in a couple of days.”
These represent just a tiny sampling of the symptom questions that my blog readers often send me. My response to each of these is virtually always some variation of this statement:
“I’m not a physician, so I cannot advise you on your specific symptoms. Please discuss them with your doctor.
In some posts about heart attack symptoms (the ones most often likely to elicit those 2 a.m. pleas for help), I’ve decided to disable the comment feature entirely because I simply can’t bear responding with the trite “I’m not a physician…”
What I know about my readers is that it must be desperation that drives a person to reach out to a perfect stranger like me online, often in the middle of the dark night (when I’m fast asleep, halfway around the world, unlikely to even read their words for many hours). What each one is asking me for is reassurance. You’re fine. You’re not having a heart attack. Go back to sleep.
But what I do not and cannot know is anything at all about them. How could they expect me, a mere heart patient myself, to provide an answer to the plea, “What should I do?”
It’s sometimes tempting to outright dismiss a symptom described by a very young woman who tells me it hurts to turn her head to the left. Isn’t that complaint clearly non-cardiac in nature? Wouldn’t it be reasonable for me to respond: “It’s probably not your heart!”?
When I first went to Mayo Clinic in 2008 to attend the WomenHeart Science and Leadership Symposium for Women With Heart Disease, I met 45 other female heart patients taking this training, ranging in age from 31 to 71. Until that day, I’d never been in a room with that many women living with heart disease.
One of the women at Mayo revealed that her only heart attack symptom had been a persistent cough.
Another whose only symptom had been that her lips turned numb.
Yet even knowing this, I can’t possibly be suggesting here or during my women’s heart health presentations to any woman experiencing bizarre symptoms like a cough or lip numbness that she ought to rush down to the local Emergency Department JUST IN CASE she’s having a heart attack!
The often-surprising reality is that since 2008, I’ve heard countless descriptions from real-life heart attack survivors whose initial cardiac symptoms seemed equally bizarre.
And despite the insistence of some cardiac researchers who claim that men and women experience identical heart attack symptoms (especially chest pain), the lived experience of real female patients can appear to be much different. Women’s atypical cardiac symptoms have taught us that truth is often stranger than the most far-fetched hypothetical symptom when it comes to women and heart disease. See also: Researchers Openly Mock the ‘Myth’ of Women’s Unique Heart Attack Symptoms
While chest pain is indeed the most common heart attack symptom reported by both men and women, up to 40% of women report no chest symptoms at all in mid-heart attack. That means no chest pain, no pressure, no squeezing, no tightness, no fullness, no heaviness, no twinge, no burning, no bubbles, no squeaks. Nothing. Nada. Zero.
But ironically, it’s been estimated that even among those who are admitted to hospital with what does indeed appear at first to be heart-related chest pain, 85% of those turn out to be non-cardiac after all. That’s an awful lot of people going to Emergency and spending time in hospital beds who don’t have heart disease.
The important thing is to maximize appropriate care for people who do in fact have heart disease (no matter what their symptoms are), while minimizing unnecessary care for those who don’t.
It might help here to explain, dear reader, that there is indeed such a thing as catastrophizing, as I wrote about here.
You’ve met catastrophizers in your own life. I’ve met them. We all have: those who are preoccupied with even the most minor of medical complaints. These are the one-uppers in life: “You think YOU’VE got pain? Let me tell you about MY pain!” My friend Dave in Santa Barbara refers to casual conversations dominated by this kind of preoccupation as “the organ recital”.
There’s also a recognized anxiety disorder called cardiophobia. According to researcher Dr. Georg Eifert, writing in the journal Behavioral Research Therapy, this is defined as:
“An anxiety disorder characterized by repeated complaints of chest pain, heart palpitations, and other sensations accompanied by intense fears of having a heart attack and of dying.”
He adds that in order to reduce anxiety, people with cardiophobia “seek continuous reassurance, make excessive use of medical facilities, and avoid activities believed to elicit symptoms”.
I have to tell you that it’s distressing for me to read comments from readers if I think they might be catastrophizers or cardiophobic.
But if I’m tempted to dismiss their fears outright, aren’t I doing precisely what so many medical professionals are already doing to far too many women? We know, after all, that women are still being under-diagnosed in mid-heart attack (and shockingly, under-treated even when appropriately diagnosed) compared to our male counterparts. For the latest confirmation of this reality, read the scientific statement from the American Heart Association, or Cardiac Gender Bias: We Need Less TALK and More WALK
Yet simply by mentioning atypical heart attack symptoms here, am I unwittingly feeding the misplaced fears of catastrophizers and cardiophobes, those fears of being in imminent danger of dying any minute now from a heart attack? I may suspect that, at any given moment, many of these symptom descriptions are, in fact, not at all heart-related based on what I’ve learned so far about cardiovascular disease at Mayo Clinic and elsewhere – but I should never be the person to decide this.
How would you respond if you were in my hospital booties? Would you feel compelled to share what you’re really thinking, such as:
“Don’t worry – that pain in your legs is NOT likely a heart attack sign!”
A response like this, as you can imagine by now, could be right – or could be very wrong.
Whenever I raise awareness here by telling the public of the inherent factors that affect women’s chances of being accurately diagnosed, there’s a small possibility that some of my readers may become irrationally convinced that they, too, are experiencing a heart attack.
This possibility, however, doesn’t mean such public warnings aren’t both necessary and important. Going online to seek more information is a perfectly normal and predictable behaviour choice – whether we’re buying a new washing machine or wondering if those weird symptoms could mean a heart attack. There are credible online sites providing trustworthy information in all searches, and there are other sites that don’t deserve our trust. See also: Health Information Online: How To Tell the Trash from the Truth
The challenge for all seekers is to gain enough background information from credible resources to go out and ultimately make the best informed decisions. Many regions also provide a free 24-hour help line you can call (like our own 811 Health Link telephone service here in British Columbia where we can ask questions of a nurse, pharmacist, dietician or other health care professional). Find out if there’s a similar service where you live.
If it’s the middle of the night (or any time of the day), and your symptoms are frightening enough to make you ask for my opinion on what you should do next, please resist that urge and instead seek immediate medical help from a trained health care provider.
In short, let me repeat my site’s Heart Sisters disclaimer here:
“I am not a physician, nurse or member of the medical profession. The information on this site isn’t intended as a substitute for professional medical advice. Please consult your doctor for specific help with your own health.”
♥
NOTE FROM CAROLYN: I wrote much more about cardiac symptoms (all kinds!) in Chapter 1 of my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local 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 JHUP code HTWN to save 20% off the list price).
.
Q: Is this site’s disclaimer enough to keep readers from asking for medical opinion?
See also:
- 2016 American Heart Association’s Scientific Statement on Women’s Heart Attacks
- What is Causing My Chest Pain?
- Oneupmanship: You Think YOU Have Pain?
- Cardiac Gender Bias: We Need Less TALK and More WALK
- Catastrophizing: Why We Feel Sicker Than We Actually Are
- 85% of Hospital Admissions for Chest Pain are NOT Heart Attack
- “How Does It Really Feel To Have A Heart Attack? Women Survivors Tell Their Stories”
- The Myth of the “Hollywood Heart Attack” for Women
- The Chest Pain of Angina Comes in Four Flavours
- When Chest Pain is “Just” Costochondritis
.
Heart Sisters 
Thank you for putting this out there. I agree with your opinion and I hope more people would come to agree with this as well.
LikeLike
Carolyn, you are between a rock and a boulder.
They are so well researched and written, it seems reasonable that people might turn to you.
Your blog posts are always about NOT seconding guessing yourself but seeking out medical attention. I think your disclaimer is perfect and appropriate (I might add something along the line of “if you QUESTION or SUSPECT you are having symptoms get medical attention” – and I, too, would turn off the comments).
P.S. Maybe put the disclaimer at the top and/or the side-bar?
LikeLiked by 1 person
Hello Judy-Judith and thanks for your thoughtful response. I like your rewording suggestion “if you QUESTION or SUSPECT you are having symptoms, get medical attention”. I do warn my women’s heart health presentation audiences, however, that – after I’ve spent 90 minutes scaring the daylights out of them with all of these bizarre atypical heart attack signs – I do NOT want them all to march en masse down to the Emergency Department together to report their sore shoulders or buzzing elbows because I’ve convinced them they could each be having a heart attack!
LikeLiked by 1 person
Carolyn, thank you for posting on this subject. Being in the same Mayo Clinic class with you in 2008 was such an eye-opener for me and so many others.
Even now, after 8 years of educating women, we have to be cautious about what we say. It would be easy to “spook” people with too much info. But, info is necessary, both to allay fears and to funnel people in the right direction to get good, credible information. I tell people I talk to to make notes at the time of symptoms and to take those notes to their physician to ask their questions. Be honest and tell all pertinent information to your doctor. He/She needs to know.
I enjoy reading your posts and continuing to learn about our subjects.
LikeLiked by 1 person
Thanks so much for weighing in here, Sharen. I love your suggestion about making notes when symptoms hit (I like to recommend the same thing: suggest they keep a symptom journal to take to their doctors, including what was going on during the few hours leading up to each episode: what were they eating, feeling/ doing?). And you’re so right, we do have to be eternally cautious about what we say to others.
PS Sharen, it was SO great to see you again at Mayo last fall after all those years!!! ♡
LikeLike
If you are not sure, check it out.
I had an artery dissection in November, and my only symptoms were a bit of tightness in the chest and shortness of breath. Since I’d had asthma when I was younger, I thought that it was just a mild asthma attack. I waited A WEEK before I went to my doctor. She did an EKG on me in her office. The EKG did not indicate a heart attack, but she was still concerned. She had her nurse draw some blood for lab tests and sent me home. That night, I got a call from her associate, saying that my troponin levels were elevated, indicting that I’d had, or was having a heart attack — and that I needed to hang up and call 911 immediately.
It was the last thing I ever expected. I am in my late 50’s, normal weight, I exercise, normal cholesterol, good blood pressure, no personal, or family history of coronary artery disease. Friends and family say that I am the last person they would’ve expected to have a heart attack — but I did.
At the cath lab, the diagnosis was that I had a coronary artery dissection, in a smaller branch of a coronary artery. I tell every woman that I know this: if you have an unusual symptom, go to the ER, or your doctor and get it checked! I hate to think about what could have happened to me if I hadn’t done that…or if my primary care physician had not thought to have my blood checked for troponin.
Perhaps now, I’m a bit paranoid. The slightest twinge, and I think, “Oh! Is this another heart attack?” I did go back to the ER once after my discharge — and it wasn’t another heart attack. I still think it’s better to go, and have it turn out to be a false alarm — rather than not go, and it turns out to be a real stroke or heart attack.
LikeLiked by 1 person
Susan, thanks for your story (particularly typical of SCAD – Spontaneous Coronary Artery Dissection – which most often hits a fit, healthy woman with few if any cardiac risk factors). I loved the part of your story where you write: “…the EKG did not indicate a heart attack, but she was still concerned….” Thank goodness for that wise doc who followed her gut instinct to order a cardiac enzyme test!
You’re still in early days yet, so no wonder each twinge still feels alarming. You might be interested in reading more on the very common phenomenon called hypervigilance. As time goes by, that sense of alarm will fade, but for now, you’re very smart to pay attention. Most paramedics I know insist that they always prefer a call that turns out not be serious, rather than the call that never comes that might turn out to be deadly. Best of luck to you…
LikeLiked by 1 person
Carolyn – thank you for this post. In my experience – I had a sister of 45 years of age who was dismissed repeatedly in three visits to the emergency room as well as several doctor visits as being cardiophobic (for want of a better word – this is a good one). Finally, she had a massive stroke, dissecting aorta. She died four weeks later.
My experience with being with her during her pleas for help and also her dying and death inspired me to form a social enterprise (charity) to support women in educating themselves and making decisions for their own self care from the centre of their being and heart. I get asked similar questions as you — I respond the same as you.
Here in the UK we have 24 hour NHS (national health service hotlines) where – if in doubt – people experiencing such concern, pain, worry can phone. You are asked to describe with ‘I’ statements what is going on. The voices of the nurses/health professionals on the other end of the line offer a sound hearing of what you are saying and you can hear yourself say what is happening and they feed it back to you as a confirmation. A sort of witnessing happens in a calm atmosphere (in my opinion). This is what makes for optimal referrals to emergency care in my opinion. In the UK this service is free.
My sister had no such sound advice and listening from a health professional who could really hear her and could also help support her in the emergency room.
I find your writing inspiring on this and also grounded. The more we become response-able in listening to our inner fears, real cries for help and in educating ourselves the better — for us all. Deep within we can trust ourselves — as our hearts beat for us. My sister knew she needed help. I think now that with what actually happened to her — the event was already so far progressed — little could have been done by the medical people then (20 years ago). Her experience though informs my own and I keep her in my heart as I support others and myself in self care and self trust.
LikeLiked by 1 person
Thanks for sharing your personal perspective, Isabella, and especially the tragic case of your sister, whose story continues to inspire your own work. You’re right – it’s impossible to know if she could have survived her medical event even if she’d been immediately seen (given the high mortality rates of aortic dissection), but that doesn’t ever reduce the grief of such a loss. Excellent suggestion to call the medical help line (we have a similar one here on the west coast of Canada where I live).
LikeLike
Thanks for this, Isabella.
The part of your sister’s story that sticks most for me is this: I cannot imagine how she could have tried harder. Three time she went to the ER, and she sought out individual doctors. Over and over again, they dismissed her.
As well as we know that something is wrongwrongwrong, only people with MD after their names can make official diagnoses and order up appropriate treatment. And they failed her, time after time.
It seems that both you and Carolyn find comfort in the fact that this was 20 years ago and that much more is now available. Learning about what has changed and what we can do to help ourselves (and each other) is what this blog represents to me.
Carolyn, it’s a tribute to you and the success of your blog that readers reach out in these circumstances.
LikeLiked by 1 person
Hi Kathleen – thanks so much for adding that additional reassurance for Isabella – and for your kind words.
LikeLike