Hypervigilance: waiting for that second heart attack

~ Carolyn Thomas

binocularsby Carolyn Thomas   ♥   @HeartSisters

Until I had a heart attack, I didn’t know that one of the biggest risk factors for having a cardiac event like mine is having already had one. Heart disease, a chronic and progressive diagnosis, is the gift that just keeps on giving. And as I wrote here, one of the Big Lessons for me has been that, although my doctors can “squish blockages, burn rogue electrical circuits, and implant lifesaving devices” all they like, their heroic efforts do NOT address what originally caused this damage to my coronary arteries in the first place – likely decades before my heart attack struck.  See also: The Cure Myth

In fact, we know that women are significantly more likely than our male counterparts to die within the first year following a heart attack, according to the National Institutes of Health.

No wonder sobering stats like these can drive the freshly-diagnosed female heart patient to an exhausting and fearful state of acute hypervigilance.

I was reminded of this while reading a book that my probation officer-daughter Larissa lent me called Emotional Survival for Law Enforcement by Dr. Kevin Gilmartin, PhD.(1)  Stay with me, dear reader – this connection actually makes more sense than you might suspect . . .   

Dr. Gilmartin, who spent 20 years in law enforcement before becoming a behavioural scientist, was in town recently to lead one of his Emotional Survival workshops for those working in the field. But his definitions of hypervigilance will sound remarkably familiar to most heart attack survivors, too.

First, he describes the inherent usefulness of this physiological response, which is basically meant to help increase our odds of survival by enabling the brain to perceive potential threats before they hurt us.

So if you’re out in the woods being tracked by wolves, for example, hypervigilance is a good thing. For example, it can mean:

  • viewing the world from a threat-based perspective
  • a mindset that sees unfolding events as potentially hazardous
  • increased awareness of all data available in the environment

But these also describe what I and many other patients have experienced after returning home from hospital following our first cardiac event, as I wrote here:

”   I was both fatigued and anxious at the same time, convinced by ongoing chest pain and shortness of breath that a second heart attack must be imminent.  I felt a cold, low-grade terror on a daily basis.”

Although I no longer live with that same cold, low-grade daily terror, I realized as I was reading Dr. Gilmartin’s book that I still tend to spend far more time in that hypervigilant state than is healthy for me. I suspect that my friends living with cancer, IBS, and many other diagnoses may experience this, too.

Because of frequent bouts of refractory angina, shortness of breath and crushing fatigue that accompany my current diagnosis of Inoperable Coronary Microvascular Disease, almost every day (sometimes several times a day) – I abruptly stop what I’m doing, clutch my chest, and ask myself:

“Is this something? Is it nothing? Should I call 911?”

This kind of relentless hypervigilance not only feels exhausting, it’s a biological state that in itself can be harmful to the body if it becomes chronic. 

As Dr. Gilmartin explains:

”   The increased level of alertness and awareness of the surrounding environment produces an increased functioning of the sympathetic branch of the autonomic nervous system that controls all of the body’s internal organs and automatic functions.”

These include pulse, respiration, body temperature, blood pressure and other key functions that affect not only our heart health, but our day-to-day decisions.

Dr. Gilmartin has dubbed this phenomenon the “Hypervigilance Biological Rollercoaster®“ and offers these early warning behavioural signs that you may be falling victim to its effects:

  •  desire for social isolation
  • unwillingness to engage in conversations or activities that aren’t related to the “war stories” of your own experiences
  • reduced interaction with friends and acquaintances
  • procrastination in decision-making
  • the “I usta” Syndrome – loss of interest in hobbies or recreational activities

That last item is significant, and although listed in Dr. Gilmartin’s work specifically as a common fallout from working in law enforcement, it will also feel familiar to people living with chronic illness, too.

Dr. Gilmartin describes it as a syndrome that describes what’s been lost from an individual’s life. He says that law enforcement officers typically use the “I usta…” response to inquiries about their own personal lives. For example:

  • “I usta jog.”
  • “I usta see old friends.”
  • “I usta keep my house picked up and tidy.”
  • “I usta do crafts.”
  • “I usta garden.”

This “I usta” syndrome is the generalized effect of that hypervigilance rollercoaster. All the activities that previously defined the complete human being can now be lost, as Dr. Gilmartin offers in his book:

   “But if these other parts of life are lost, a new person emerges, many times a new person without the balancing strengths of multiple dimensions, activities, or roles in life to draw upon for personal perspective and understanding.

“Without this balance, the short-term day-to-day effects of the hypervigilance roller coasters begin to turn into longterm, more damaging losses.”

I don’t know about you, my heart sisters, but I have an “I usta” list that often seems alarmingly long.

The reality of my ongoing daily cardiac issues has meant that much of my life is divided into what I was able to do “before heart attack” and now “after heart attack”.  No matter how you slice it, the scope of my “after” list remains a much-diminished reality compared to that “before” list.

That’s because debilitating physical symptoms are almost always accompanied by emotional and psychological fallout – an under-appreciated and rarely-acknowledged companion to chronic illness that can indeed make physical suffering feel even worse.

The promising news, according to Dr. Gilmartin, is that we can actually learn how to become emotional survivors no matter where we are right now.

In  “Are You A Victim or a Survivor?“, I share more on what I’ve been learning from the wonderful world of behavioural science on how to help ourselves accomplish this.

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Q:  Do you have an “I usta” list that’s evolved from your own sense of hypervigilance?

NOTE FROM CAROLYN:   I wrote much more about how we adjust to a serious diagnosis 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 the code HTWN to save 20% off the list price).

See also:

How a heart attack can trigger PTSD

Are you a victim or a survivor?

The loss of self in chronic illness is what really hurts

Squishing, burning and implanting your heart troubles away

The cure myth

Where’s the “survivorship” model for heart patients?

The new country called Heart Disease

“Everybody has plans ‘til they get punched in the mouth.”

How we adapt after a heart attack may depend on what we believe this diagnosis means

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  1. Kevin M. Gilmartin, PhD. Emotional Survival for Law Enforcement. E-S Press. 2002.

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Published by Carolyn Thomas

21 thoughts on “Hypervigilance: waiting for that second heart attack”

  1. I had two stents this past Sept and I feel worse as the months go by. Thanks for your articles as I thought it was just me with the fatigue. Had my husband read it so he understood it also.

    Thanks! I signed up for your e-mails.

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    1. Hello Janice and welcome to this site. So glad you found it. If you continue to feel worse over time, do not hesitate to mention this to your physician. Best of luck to you…

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    1. Hello Len – lovely to hear from you! I quote your “before” and “after” observation ALL the time! It is so true!! Happy Holidays to you…

      Note to readers: Len Gould is an Australian psychologist who runs a cardiac rehabilitation program for heart patients – and more importantly, he is himself a heart patient who has undergone open heart surgery. Here’s more from Len: “Too Embarrassed To Call 911 During a Heart Attack?”

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  3. Hi Carolyn,

    I’m not surprised that heart problems produce this kind of trauma, but I’m glad to know the signs in people I will know who have a heart disease history.

    I find I can also apply this to someone I know who was treated for cancer — or anything that has a very real, dangerous risk of recurrence. It seems like a very fine balance — listening to your body, but not conditioning yourself to be afraid or to identify psychosomatic symptoms as pathological ones, related to existing disease.

    I can also kind of relate to hyper-vigilance personally. I have had my VP shunt, a long tube that goes from the brain to belly, to drain excess fluid on the brain, since I was 10 days old. As shunts have a high failure/problem rate, many grown ups around me would worry about me quite easily if I hurt myself or had a headache. It doesn’t help that symptoms of a serious problem can also be symptoms of something totally harmless, unrelated and common. I think I was so rational because I’d always had that condition and I always knew what felt “normal” for me.

    If you have memories of becoming sick and you remember your life before being sick, I imagine that itself can influence hyper-vigilance.

    Ashley

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    1. Hi Ashley
      “It doesn’t help that symptoms of a serious problem can also be symptoms of something totally harmless, unrelated and common…” You have hit the nail on the head with that statement. And I think you’re right about childhood onset conditions in which you’ve grown up with the “new normal” of treatment vs adult onset conditions in which we tend to make constant ‘before and after’ comparisons that reinforce and remind us how bad things have become since “the event”.

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  4. Fibromyalgia can be defined as a state of constant hypervigilance, that is the amygdala (in the brain) is in a chronic state of hyperarousal.

    So combine this with heart disease and you know what I live with on a daily basis. Exhausting!

    Thanks once again, Carolyn.
    Barbara

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    1. Exhausting indeed! I was thinking about you while reading Gilmartin’s book, recalling those early anxious months following your own heart attack. (Readers, find out more about Barbara’s story here). There are so many diagnoses that can strike us with that sense of hypervigilance. My friend who had a seizure in hospital three months ago while having a stroke is home now, but is feeling very afraid every day that she’ll have another seizure – despite the reassurances of her medical team that such an event is actually very unlikely. She continues to improve daily, but it’s distressing for family and friends to observe her worrying day after day about an outcome that will not likely ever occur again. All we can do is just watch and wait and stay hopeful.

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    2. I also have fibromyalgia with neuropathy and what Barbara says is true.

      You have pain almost constantly in some part of your body, with many symptoms being the same as has been described for awareness of heart attack. I get jaw pain, shoulder pain, back pain, weakness in my arms and hands, chest pain, neck pain, and the list goes on. Every pain has me thinking “is this a heart attack?” and the fear is you think it’s fibro and but in the back of your mind you are thinking heart.

      You live constantly with that fear and once I had a heart attack last year, the hypervigilance has stepped up in my life, I’m afraid. I must say, I am very reluctant to mention any of this to my family. Would they think I am imagining it or putting it on?

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      1. Hello again Denise – as you describe, when we have more than one diagnosis, it can be challenging to figure out which one’s responsible for today’s symptoms! Best of luck to you . . .

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  5. Carolyn,

    I am slowly adding back the Usta list – gonna try a TRI in October if I can get the training in. Have applied to the govt to get my flight certs back – can’t be a JetGirl without a jet much longer! The list improves daily! Was never so happy to cut up my disability placard for my car!!! I left the bits along the trek in Spain!

    JG

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  6. Hypervigilance IS exhausting. Add in additional diagnoses (diabetes, surgical menopause) a patient just doesn’t know what to do. Too many symptoms overlap and now I’m never quite sure what is going on or why.

    Thanks for this post today, I’m going to get past the “I usta…” and delve into the “I’m going to…”

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    1. That’s exactly the reaction I had too while reading Dr. Gilmartin’s book, Elizabeth – more focus on what I am able to do, less pining for those “I usta” list items…

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  7. Great article! “I usta” walk and talk at the same time, ride roller coasters, feel the heat, go to the dentist without worrying, etc. none of which I can do after my 3 stents in 2 major arteries. Initially, the hypervigilance was tied to anxiety, panic, and depression, secondary effects that weigh heavily upon cardiac patients and most often untreated.

    Now my life is about modification, finding a way around those things I can no longer do or giving them up altogether and finding new ones to replace them. Yet, the hypervigilance folder remains, moved to the back of the file cabinet for now, ready to be pulled out in case of an event.

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  9. Hi Carolyn, I relate so much to this topic but for me, the ‘I usta’ list was before my heart attack, due to other health issues.

    What I found very annoying after my heart attack, was the health professionals who continually referred to the high risk of another. I know all that and being constantly reminded made my fear more heightened. These days, over a year since my heart attack, I think constantly about my diet, not only for my diabetes, but also for my triglycerides as I can’t get them down. A genetic problem.

    I eat a healthy diet, but it takes over my mind all the time, as my fear increases. The thing is, I hear about or speak to people who have had a heart attack in the past and haven’t had another so it makes me hope I am in that category. One thing that I think about especially when on the news is young people dying. I felt I was too young when I had my heart attack.

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    1. Hello Denise – you are describing hypervigilance to a T: “… it takes over my mind all the time…” but you’ve also hit upon such a good point: even a scary statistic (like 1 in 4) means that 3/4 are still alive and well! But sadly, I think doctors must keep reminding their patients of this reality because far too many of us live in La-La Land denial.

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  10. Oh Carolyn! What a wonderful perspective. You’ve just described my mom since her heart attack and me since my illness a couple of years ago.

    Hypervigiliance is exhausting! In fact, we went camping and fishing a couple of weeks ago because we couldn’t stand being trapped at home anymore. It did us some good even though it took some days to recover.

    Thank you so much for sharing! May I reblog?

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    1. Hi Beth – thanks so much for your comment. Hypervigilance is indeed exhausting. So is camping and fishing – but just way more fun and productive in the end. And yes by all means, feel free to repost this on your site (as long as you include attribution and a link back to the original).

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