by 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 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”, 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, women are twice as likely to have a second heart attack in the six years following the first compared to our male counterparts.(1) No wonder sobering stats like this can drive the freshly-diagnosed heart patient to an exhausting and fearful state of acute hypervigilance.
Many of us have experienced short-lived hypervigilance 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 either vague or severe symptoms that a second heart attack must be imminent. I felt a cold, low-grade terror on a daily basis.”
Because of frequent bouts of refractory angina, shortness of breath and crushing fatigue that accompanied my secondary diagnosis of Coronary Microvascular Disease, almost every day (sometimes several times a day) – I would often abruptly stop what I was doing, clutch my chest, and ask myself:
“Is this something? Is it nothing? Should I call 911?”
This kind of hypervigilance not only feels exhausting, but it’s a biological state of increased alertness that in itself can be harmful to the body if it becomes chronic. And hypervigilance can also happen even when there is NOT a real, physical danger. Many heart patients can relate to what Len Gould, a cardiac psychologist (and a heart patient himself) likes to say:
“Before a heart attack, every chest pain is just indigestion. Afterwards, every chest pain is another heart attack!”
Dr. Kevin Gilmartin is the author of a book that helped me get through this.(2) His book is called Emotional Survival for Law Enforcement, lent to me by my probation officer-daughter, Larissa. (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, describes hypervigilance as a common physiological response that’s inherently useful. It’s basically meant to help increase our odds of survival by enabling the brain to perceive potential threats before we get hurt.
So if you’re out in the woods being tracked by wolves, for example, hypervigilance is a good thing.
But he also says that there are some early warning behavioural signs that hypervigilance is affecting your normal life:
- increasing 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 former hobbies or recreational activities
That last sign is significant, and it can exist among patients living with chronic illness, too.
Dr. Gilmartin describes it as what’s been lost from a person’s life. For example:
- “I usta be a runner.”
- “I usta entertain friends and family.”
- “I usta garden.”
This “I usta” Syndrome is a generalized effect of hypervigilance. Enjoyable activities that previously defined the complete human being can be lost, as Dr. Gilmartin describes:
“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.”
He now advises his former law enforcement colleagues to be careful in how they identify themselves. Instead of saying, “I’m a police officer”, for example, he suggests: “I work as a police officer.” There’s a subtle but very important difference in those words.
The advice applies to us heart patients, too – especially when we’re feeling anxious about this new role. Instead of identifying ourselves as “I’m a patient”, try thinking, “I’m a ______ (fill in the blank generously: woman, Mum, sister, daughter, knitter, dancer, gardener, reader, writer, bridge player) who also happens to be diagnosed with heart disease.”
It reminds us that a diagnosis does not have to define us – which can be hard for a hypervigilant person to believe, especially for the freshly-diagnosed.
The promising news, says Dr. Gilmartin, is that we can actually learn how to become better at becoming emotional survivors – no matter where we are right now. For more on his work, see Are You a Victim or a Survivor?“
One way to start if you’re feeling stuck in a hypervigilant state is to seek counseling help from a psychotherapist, pastor, or peer counselor, as Ana Gotter wrote in HealthLine. Through such therapy, you may learn new ways to cope with episodes of hypervigilance and anxiety, including these strategies:
- Be still and take slow, deep breaths.
- Search for objective evidence in a situation before reacting.
- Pause before reacting.
- Acknowledge fears or strong emotions, but don’t give in to them.
- Be mindful.
- Set boundaries with others and yourself.
♥
1. Radovanovic D et al.” Gender differences in management and outcomes in patients with acute coronary syndromes”. Heart. 2007 Nov; 93(11):1369-75.
2. Kevin M. Gilmartin. Emotional Survival for Law Enforcement. E-S Press. 2002.
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Q: Do you have your own “I usta” list that has evolved due to hypervigilance?
NOTE FROM CAROLYN: A version of this post originally ran here in June, 2014. I included more about hypervigilance among heart patients in my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for it at your 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 30% off the list price).
See also:
The familiar self, the unfamiliar self and the recovery of self
Post-heart attack: why we feel worse before we feel better
How a heart attack can trigger PTSD
The loss of self in chronic illness is what really hurts
Squishing, burning and implanting your heart troubles away
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
Heart Sisters 
This post really resonates with me. I’ve got severe valve disease that is causing enlargement of my left atrium. I’m in a watchful waiting stage and expect that at some point, as things progress, I will have a second open heart surgery and a valve replacement. It’s weird to be in a spot where I’m too severe to have a second valve repair, but not yet severe enough to have my valve replaced.
My next echo is in three months and I find myself constantly thinking about what the results will be. I’m scared to use any sick days or vacation days at work, just in case I need another open heart surgery. Of course going over a year without a break is tough..
I keep having to remind myself that I am okay right now. Making a list of the things I can do helps me focus on how I am functioning well. I can garden, clear brush on our new property, play with my dog, go swimming, biking and use my treadmill every day. I can work an almost full time job, help my aging parents.
I very well may have a second heart surgery sooner rather than later, but mentally making myself out to be worse off right now than I am is counterproductive.
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Thanks so much for sharing your experience here, Karen. As I was reading your comment, it struck me that you are already in solution-mode, despite being in the middle of this surreal waiting game (too sick for Plan A, not yet sick enough for Plan B) which is crazy-making! Being able to take a small step back and self-assess what you are still quite capable of doing despite your overwhelming medical situation is a wonderful skill to have at your stage. I’m not a physician so of course cannot comment specifically on your valve diagnosis, but there’s one thing that leaped right off the screen at me:
You have been carefully banking your sick days/vacation days for a YEAR!!??!! Going all that time without a break is not only “tough”, it is not good for your precious heart. Please do yourself a big favour and make a decision to take at least one vacation day during the next three months before your next echo appointment. Just one day. On that vacation day plan to do only activities that fill your heart with joy and peace (no errands, no tasks around the house – just deliberate joy, joy, joy!) Just one day.
Your body really needs this, and you deserve it! Best of luck to you…
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I know, a year sounds crazy. During that time we moved to a larger city out of a rural area to be closer to better work for my husband and medical care for me. I have a couple other chronic health conditions that I also need to plan for. Once I have 6 weeks of vacation/sick days in the bank, then I plan to slow down… you’re right though, a day or two off would be a good idea.
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After years of chest pains and 4 heart attacks, I finally got the real culprit of my problems: hyperparathyroidism.
The calcium started elevating over 20 years ago but it was never high enough for any of my drs to “worry” about until finally osteoporosis and arrhythmia got me to an endocrinologist that put all my symptoms together and realized I had almost all of them!
Just got surgery a week ago: they found 3 tumors over producing hormones that caused the “moderate” calcium elevation.
Have a serious look at this, read and pressure your drs if your level is over 10 and you had an attack.
Sorry, I forgot to tell you: I do not have any occlusions, no arterial plaque and yes my cholesterol is elevated, I had muscle pain, I was tired most of the time, had constipation, IBS, GERD, headaches, migraines, and almost all the symptoms related to high calcium and were all missed.
Open the site for :The Norman Parathyroid Clinic in Tampa if things look familiar to you.
https://www.parathyroid.com/parathyroid-surgery.
Do not let any dr dismiss your PTH (parathyroid hormone level without having and endocrinologist do a full follow up for at least one year.
Looking forward to my recovery and I will keep you posted of my changes, so far first week my muscle aches are gone after the first day, I still have RA but the pain is very different.
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Maria, thanks for pointing out an often-missed culprit. Mayo Clinic experts say that “complications of hyperparathyroidism are primarily related to the long-term effect of too little calcium in your bones and too much calcium circulating in your bloodstream”, and although the exact cause-and-effect link is unclear, it seems that high calcium levels can be associated with cardiovascular risk factors like high blood pressure and certain types of heart disease.
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Newbie here, but your book has helped me immensely already. Having just been diagnosed with possible artery blockage and awaiting cardiac catheterization on the 18th, every twinge or shortness of breath or dizziness I feel, I think to myself oh lord, here it comes.
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Hello jukasmom – waiting is definitely the worst, isn’t it? Once you have a clear diagnosis, even if it’s very serious, then at least you’ll have a better chance of having a definite treatment plan. Glad you found my book helpful, and best of luck to you on the 18th…
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I fit into this category in many ways. first, as a NED (No Evidence of Disease) Breast Cancer patient, I keep waiting for something to take me back to the chemo room. Every ache I think, “It’s in my bones!”
Then I had a stroke in March and am on Lipitor which causes aches, so now I have twice as much pain to consider being a symptom of bone cancer. I have to remind myself to just ENJOY LIFE. This post was great. Thank you!
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Hello Linda – first breast cancer and then a stroke. You’ve officially reached your lifetime quota of medical crises! 😉 It’s not surprising at all that every ache looms like a scary new threat at this point. Best of luck to you as you figure it all out, day by day…
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I don’t think I ever — during almost 3 decades of cardiac nursing — actually ever talked to my patients before discharge about this common phenomenon that we could have/should have anticipated. During most of those years, our attitude was ‘now you’re fixed, go home and be happy that we fixed you!’ much like Linda probably heard too in the cancer ward. No big deal-No drama-Get over it.
But now I believe my colleagues and I could have done so much more to help our heart pts simply by a few moments of chat about what might lie ahead at home. Referring them to a cardiac support group, in person or online, is a must. Let women know that there are helpful resources out there, that they are NOT alone.
Your blog and more recently your terrific book serve a similar purpose Carolyn. You have gone before, lived it, struggled to figure it all out, and then written about it – but what makes it unique among resources is that you tend to do this with the addition of current scientific data. Thank you!!
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I appreciate your comment and your kind words about my blog and book, RN. Thanks also for the plug for cardiac support groups. These can be very helpful especially in the early days and weeks when we have far more questions than answers. I discovered the WomenHeart online group at Inspire – open 24/7, I could ask all my questions, or just lurk and read for hours what other women had been through, and now with over 38,000 women all over the world who are also living with heart disease. Highly recommended!
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Of course, dear Carolyn, you are once again writing about me.
I spend a great deal of time saying aloud or thinking this is it: “I’m having another heart attack”. It seems I am always on alert, waiting for it. I have wasted 5 1/2 years thinking I’m about to have the next one. I know better. I meditate, I take deep breaths, I practice self talk- all that should work. Still, that fearful brain is just waiting to prove itself right.
It is certainly PTSD- that once closeness to death never completely goes away and little triggers brings back that dreadful fear. It is, in my view, what we survivors have as an albatross around our necks.
Keeping busy, but not overwhelmingly busy, being with friends, not always focusing on health, BREATHING, and smiling to trick the brain are just a few things I do. Sometimes it works.
xo
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Hello Barbara – hypervigilance is clearly associated with PTSD, and many heart patients are affected with PTSD (some studies suggest up to 30% of heart attack survivors suffer this) so it’s not surprising that so many also appear to be hypervigilant – and no wonder!
“Tricking the brain” is a good description of how we get through it…
Thanks for sharing that perspective…
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Hi Carolyn,
Thank you for this important post. I can relate to multiple aspects. As a person who had a stroke 3 months ago and lives alone, I too remain hypervigilant for warning signs of a second stroke. Following the first stroke, the neurologist told me she didn’t know what specifically caused the first one as I don’t have any of the traditional risk factors. Additionally, the initial warning sign I had for the first stroke was vertigo, which is one that is not listed on the FAST acronym (Face, Arm, Speech, Time). Now on short-term disability from work, I’m fighting the “I usta” syndrome.
I want to add that mental illness is also a disorder where people tend to define others by their diagnosis. How often have you heard someone say offhandedly “Oh, he’s the schizophrenic over there,” or “She’s the borderline screaming in the corner.”
What we should be saying is “Paul is a talented artist and a good friend. He was diagnosed with schizophrenia four years ago.”
Take the time to say a couple of extra words. It’s good for everyone.
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Thanks so much for weighing in here, Andrea. You are in very early days yet (barely three months post-stroke) and you’re likely still trying to make sense out of something that makes no sense. It’s a day-by-day recuperation, and not just physical…
I’m so glad you brought up the important point about words. We see the same feedback from people diagnosed with epilepsy (not “epileptics”) or asthma (not “asthmatics”). I think describing somebody by their medical diagnosis serves to further dehumanize and distance them. Words do matter!
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