Post-heart attack: why we feel worse before we feel better

by Carolyn Thomas     @HeartSisters

Discharge from the hospital is a highly difficult time for both patients and families, who are often under-supported. Our study found that the levels of the stress hormone cortisol in heart attack patients increased sharply after hospital discharge – and they can stay elevated for months.” 

The study that Dr. Doreen Rabi described to me may help to answer the question that so many of my Heart Sisters readers have been asking for years: Why do I feel worse after my heart attack before I start to feel better?   .     .    .    

I asked myself the same question after being discharged from the hospital following my own heart attack. Shouldn’t I feel relieved and grateful now because the blocked coronary artery that caused my heart attack had been magically re-vascularized? Wasn’t I “fixed”?

Instead, I felt frail and scared. Every twinge in my chest left me reeling:  Is this something? Is it nothing? Should I call 911?  I became convinced I would die in my sleep. In fact, every night, week after week, I silently tidied the apartment before bedtime so that when my corpse was found the next morning, at least it would be found in a nice clean place.

I was a wreck. And I knew that I’d already put my family and close friends through so much worry. I didn’t want any of them to worry even more about me, so at the same time I was internally screaming, I was also trying to practice happy-face smiling when in their presence. I didn’t know it at the time, but this not-uncommon patient decision was what psychologists call emotional labour.

And it’s not good for us!

Dr. Rabi’s initial message to me was a Twitter response to a blog post I’d written about how the medical profession has abandoned the historically important concept of convalescence (that’s the  period of recuperation care between the time we leave the hospital and the time we are truly recovered). She agreed that this post-discharge period can be  fraught with unexpected issues, even for heart patients whose cardiac events have been successfully treated.  See also: The hospital discharge race: is sooner always better?

Dr. Rabi is Head of the University of Calgary’s Division of Endocrinology & Metabolism, and a full professor in the Departments of Medicine, Community Health and Cardiac Sciences. Even more importantly to me, Dr. R. has a keen interest in women’s heart health specifically. (1)

In the study she mentioned, published in the European Journal of Preventive Cardiology,(2) Dr. Rabi and her colleagues evaluated repeat samples for the stress hormone cortisol in 309 heart patients aged 18–55 years, starting within 48 hours of their hospital admission. Patients were also followed up one, six, and 12 months after their cardiac events. This was “one of few studies that looked at post-hospital discharge levels” of this stress hormone.

Cortisol is an important hormone produced in our adrenal glands. But too much of it can wreak havoc on the body, causing an increase in heart rate, blood pressure and blood glucose as part of our fight-or-flight response, along with other distressing symptoms.

The cortisol study’s findings were striking:  about one-third of these heart patients showed “persistently elevated cortisol levels, which are associated with the type of inflammation that contributes to coronary artery disease.”

You might imagine that the most stress-inducing part of any cardiac event would actually be during the middle of a heart attack.  So I asked Dr. Rabi why our cortisol levels tend to increase sharply AFTER we’re already discharged from the hospital, and here’s how she answered:

“I can only speculate here, but my sense is that there are two things at play.

“The first is that having a cardiac event is inherently frightening. The care received by most patients in acute coronary care units is excellent and intensive. People feel well-monitored and supported. Being surrounded by people who manage heart disease every day provides some sense of reassurance and safety, so leaving that safe environment to be on your own can be daunting.

“The second piece we need to acknowledge is that a cardiac event like a heart attack introduces a huge number of changes to one’s life, including restrictions on activities, new medications and often new dependencies. These are all uncomfortable changes that are often not fully realized by the patient or their family members – until they are back at home and feel the acute tension between who they were before this new diagnosis and the new person they are now.”

Dr. Rabi added:

“This study suggests that the transition for some patients (particularly those with a history of smoking, peripheral vascular disease and those with chronically elevated blood glucose levels) is a prolonged stress.”

She offered one specific challenge in this area: in general, our baseline cortisol test results are not often available.

“This is important: people who experience chronic stress may have persistently elevated cortisol, and so may have a blunted response to extreme stress – like a heart attack.” 

She also cited previous studies (for example, one by Dr. Colleen Norris and her colleagues at the University of Alberta) that identified a difference between men and women who had undergone cardiac catheterizations: women tend to have higher levels of this stress hormone than their male counterparts do. (3)

A 2016 research study Dr. Rabi mentioned (Dr. Petr Kala and colleagues from the Czech Republic) tracked symptoms of depression and anxiety in heart patients from 24 hours post-cardiac event to one year post-event.(4) 

“These researchers found that symptoms were highest immediately after a cardiac event, and were the lowest at the time of discharge. Symptoms then increased again once patients were back home, hitting a second peak at six months.”

Coincidentally, and echoing the findings of the Czech study, six months after surviving a misdiagnosed heart attack, my GP  would have said that I had “recovered” from that cardiac event, but my troubles were not over. For example:

  • my ongoing cardiac symptoms had been subsequently diagnosed as coronary microvascular disease
  • I had failed my half-time return-to-work trial
  • I lost my job
  • I’d been forced to apply for longterm disability benefits
  • I was crying for long periods every day
  • I had to literally beg my (now former) GP for a referral to see a psychotherapist.

Dr. Rabi suggests that women experience more chronic stress that impairs our physiology, and then we experience more anxiety, depression, lower quality of life, and more isolation compared to our male counterparts, post-cardiac event. She adds:

“What we likely need to further investigate is not whether the high cortisol is a problem, but whether the chronic stress that prevents women from mounting a normal stress response is the problem.”

Take care. Stay safe. . .

1. Pelletier R, Khan NA, Rabi DM, Cox J, et al. “Sex Versus Gender-Related Characteristics: Which Predicts Outcome After Acute Coronary Syndrome in the Young?” Journal of the American  College of Cardiology.  2016; 67(2):127-135.
2. Tang AR, Rabi DM, Lavoie KL, Bacon SL, Pilote L, Kline GA. “Prolonged hypothalamic-pituitary-adrenal axis activation after acute coronary syndrome in the GENESIS-PRAXY cohort.” European Journal of Preventive Cardiology. 2018; 25(1):65-72.
3. Norris CM et al. “Gender as a determinant of responses to a self-screening questionnaire on anxiety and depression by patients with coronary artery disease.” Gend Med. 2009; 6(3):479-487.
4. Kala P et al. “Depression and Anxiety after Acute Myocardial Infarction Treated by Primary PCI.” PLoS One. April 2016; 11(4):e0152367.
Image:  Goran Horvat, Pixabay

A big hug and a sincere “Thank you!” to Dr. Doreen for taking time out of her extremely busy life to answer my questions for this article.

Q:  Did you feel worse before you started feeling better after your cardiac event? 


NOTE FROM CAROLYN:  I wrote much more about becoming a patient in my book, A Woman’s Guide to Living with Heart Disease  (Johns Hopkins University Press, 2017). You can find this book:

  • at your nearest library branch
  • at all bookstores (please support your local independent bookshops)
  • order it online (paperback, hardcover or e-book) at Amazon
  • order it directly from Johns Hopkins University Press (and use the code HTWN to save 30% off the list price when you order)

See also:

-The cure myth

-The loss of self in chronic illness is what really hurts

-Stressed: who, me?

-How runaway stress hurts your heart – and your brain

– You can watch Dr. Doreen Rabi in the powerful and short (22 minutes) documentary film A Typical Heart.  She’s one of the eight medical experts who joined seven heart patients (including me) interviewed for this film about “the deadly disparity in diagnosis, treatment and outcomes between male and female heart patients”.


10 thoughts on “Post-heart attack: why we feel worse before we feel better

  1. Hi Carolyn —

    Your posts on what it is like to *live with* heart disease post-MI have been so reassuring to me. I spent months after my first MI (at age 51) experiencing profoundly destabilizing symptoms — I was rehospitalized 4 times in the following 6 months, but none of the non-angiogram tests came back abnormal, so the MDs sent me home with a “stress” diagnosis and began to not so subtly indicate that they thought I was emotionally overwrought. I was! and there was no help offered, just judgment for what I think they perceived as me wasting their time.

    I changed health insurance companies (something we can do here in the US if you work for a big enough company). My new cardiologist sent me for an angiogram as soon as we could schedule it. I had a 98% blockage in a 2nd coronary artery and had a stent placed. I consider this a .5 heart attack — no clear damage to my heart, but months of debilitating symptoms prior to the stent.

    I noticed that within about 3 hours after the stent placement that this chronic sense of malaise I had felt dissipated. I mentioned that to my cardiologist and he said that what likely happened was that my body was upping the release of adrenaline in order to try and force blood through my worsening arterial blockage. Once the blockage went away, the body could ratchet down the adrenaline/cortisol.

    We are a complicated inter-connected set of mind-body reactions. I appreciate you posting about post-MI stress levels. I’ve worked for many years with people with cancer and at the end of life. The “whole person” support for heart disease patients is grossly underdeveloped compared to what I have seen in these other arenas.

    Liked by 1 person

    1. Thank you for sharing your perspective, Taryn. In my experience, once a woman has a “stress” diagnosis on her medical chart, her chances of a future corrected diagnosis – even with “profoundly destabilizing” symptoms leading to your “.5 heart attack” – go way down. I wonder if you’d been a man presenting with your exact same symptoms, would you have been dismissed as just being “stressed”…?

      You are so right – we are a complicated interconnected mind-body combo! I worked in palliative care for many years and often saw how that “whole person” support you mentioned is fully embedded in the practice of good end-of-life care. We have a long way to go in cardiology, which is also why I appreciate Dr. Rabi’s work so much!

      Take care, stay safe… ♥

      Liked by 1 person

  2. I had my 3rd MI one year ago. According to my count it was my 4th. The last two were Microvascular blockages.

    Recovery from this last one was grueling and terrifying. Cardiac rehab and amazing talk therapy helped me, along with anxiety meds. I was against them but my female team of providers thought it was worth a trial. Huge success.

    I respect your point of view. Thank you for your articles. Best,
    Randi Beth Albrechtsen

    Liked by 2 people

    1. Hi Randi – it’s so terrific to read that you finally found relief thanks to cardiac rehab (cannot say enough about how important cardiac rehabilitation is for ALL heart patients!) plus talk therapy and your meds. I think a multi-pronged approach (whatever the choices) often seems to work, and as you found, sometimes the choices we’re offered may not be the ones we think we want – but it may be worth a try when recovery is feeling ‘grueling and terrifying’, isn’t it?

      Take care, stay safe… ♥


  3. Some of the best advice I got post-cardiac event was from you when you said, “Give yourself 6 mos to a year after ANY cardiac intervention to feel somewhat normal”

    I had been beating myself up for weeks… Why wasn’t I okay? After all I did not have a heart attack?

    In 2017, I developed atrial arrhythmias requiring an ablation procedure… Two weeks later I developed weird pains, not in my chest but in my upper back between my shoulder blades. After an emotional phone call with my cardiologist he scheduled a cardiac catheterization in 3 days.

    It turns out I had a 90% lesion in my circumflex artery and I received a stent…. No “heart attack”, no muscle damage, right? But our heart is the center of our Life… just the thought of it not continuing to do its job and keep us alive is STRESSFUL!

    To this day, I still develop a low grade stress response to anything associated with chest pain, back pain, tachycardia….do I need to call the doctor or is this part of my cardiac normal? Is this my normal fatigue? Or is my heart “failing” ?

    The stress response is lessened… but it still pops up the same as if a bear just walked into my bedroom!

    Liked by 1 person

    1. Hello Jill – such a profoundly important point (one that’s still under-estimated among many healthcare professionals): “Our heart is the center of our Life… just the thought of it not continuing to do its job and keep us alive is STRESSFUL!”

      It’s not surprising at all that certain symptoms will trigger immediate feelings of alarm based on your history. I’ve written a lot about cardiac pain (because I still live with so much of it!); particularly interesting to me is how our bodies can “trick the nervous system” into experiencing more (or less!) pain depending on the specific circumstance.

      For example, pain scientists tell us that taking a headache pill that you believe will work on a bad headache means that your sensation of pain actually begins to decrease long before the medication even has time to be absorbed into the bloodstream – because your nervous system is being tricked. And conversely, discovering that this trusty pill bottle is EMPTY when you reach for it may immediately convince your nervous system that the pain is worse.

      It’s like learning to somehow convince yourself that the bear is NOT in your bedroom. More on that here, part of a 3-part series on cardiac pain

      Take care, stay safe… ♥


  4. I was in that raised state of anxiety for well over a year after my STEMI four years ago. I had been diagnosed with having a large gallstone requiring gallbladder removal just a few weeks before the heart attack. I had to wait for 9 months before surgery, so as you can imagine, every pain became an MI in my mind.

    Even after surgery I was in that heightened state, resulting in me having panic attacks, though I told the doctor they couldn’t possibly be. He gave the diagnosis a medical name – dysautonomia – and explained why I felt so dreadful. I was able to go home and research for myself before I could accept the diagnosis and a medication, Gabapentin, which I took for just two weeks before taking myself off it.

    It did the trick and my recovery began. There have been ups and downs, including a total knee replacement 4 months ago but I now have the knowledge to recognise when I’m becoming too stressed and have the tools to help me feel better – mindful activity, exercise, healthy food and relaxation.

    Liked by 1 person

    1. Hello Jane – I cannot even imagine how stressful waiting all those months for surgery AFTER your heart attack must have been for you! You have been through quite a lot in four short years (including your recent knee replacement!)

      I’m so glad you brought up the concept of having tools to help yourself feel better when things get rough. I have often thought that, even though my own ongoing symptoms appear to be remarkably similar to my very earliest (and terrifying) ones, the difference now is that I have a toolbox of things that I’ve learned along the way that can help me get through…

      Take care, stay safe… ♥


  5. Thank you Carolyn. This research on Cortisol is so insightful. I am 10 months post MI, and it has been a difficult journey. I am just starting to be able to do more than one activity a week without many after effects.

    I don’t know how Bernie Sanders did it…we had our attacks around the same time. Luckily, I retired last year so going back to work has not been an issue. I wish more doctors would realize that we don’t all heal at the same rates, now a little more science to confirm it.

    Much gratitude to your site….all the best to you and your readers.

    Liked by 1 person

    1. Thanks for sharing that perspective, Christine. “We don’t all heal at the same rates” is SO true, yet much of what we’re told (if we’re told anything like this before hospital discharge!) seems to be cookie cutter info.

      Many people have found that the one-year anniversary of a cardiac event (what we call our “heart-iversary”) seems to be a turning point in starting to feel more like our old selves. I hope that’s true for you, too.

      Take care, stay safe….♥


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