Many people who have been diagnosed with Takotsubo syndrome (TTS) report receiving very little (if any) information about TTS in hospital and many describe a sense of abandonment following hospital discharge. In some cases, clinicians have not heard of TTS. For a couple of first-hand accounts of the impact of TTS on a person’s life after the diagnosis, read Laura’s story and Ellen’s story.
In a small study comparing women with TTS and women with acute coronary syndrome (heart attack and unstable angina), women with TTS were found to be significantly:
To effectively support people with TTS, clinicians need to learn more about the condition and dispel some of the misconceptions they may hold about TTS.
Takotsubo syndrome is a NOT a rare condition
TTS was not recognised until 1990. Recognition of the syndrome was poor for some time after that, but as awareness has improved, the number of cases reported has grown exponentially. It has been estimated that the prevalence of TTS is approximately 2% (up to 10% if only women are considered) of all patients presenting with suspected acute coronary syndrome.2
Takotsubo syndrome is NOT a benign condition
Case series and international registries report TTS complication rates of 20%-34.5% and a mortality rate that is comparable to that of ST-segment elevation myocardial infarction (STEMI).3 Templin et al. reported the rate of major adverse cardiac and cerebrovascular events as 9.9% per patient-year, stroke or transient ischemic attack 1.7% per patient-year, and the rate of death 5.6% per patient-year during long-term follow up.4
Takotsubo syndrome is NOT confined to elderly females
TTS occurs most commonly in females over 50 years of age, but has been reported in men, younger women, children and neonates.
Emotional stress/distress is NOT the only trigger for Takotsubo syndrome
Physical triggers for TTS are increasingly reported. Of 1750 patients in the International Takotsubo (InterTak) Registry, physical triggers were more frequently present than emotional triggers (36.0% vs. 27.7%), 7.8% of patients had both triggers, and 28.5% had no identified trigger. Emotional triggers were more common among women, whereas physical triggers were more prevalent among men.4
The Takotsubo Wall feature on this website has self-reported data for TTS. The sample consists of 98% women and it is a younger cohort than normally reported (mean 58.22; median 59, range 21-87 years) which reflects an age group that is more comfortable with internet use. The lower number of males in this cohort compared with commonly reported figures likely accounts for the lower percentage of physical triggers that are more common in males. It may also be influenced by the lower number of elderly women in the cohort who may be more likely to have illness as a physical trigger.
At July 5th 2021 there were 608 entries with the breakdown as follows:
In cases where the stressor was uncertain, there may have been a combination of physical and emotional stress and either or the combination of both could have triggered TTS. In the setting of physical illness, emotional stress due to illness cannot be entirely discounted as a trigger.
Chronic stress, anxiety and depression are conditions that have been associated with the development of TTS.4 Studies have found that many people with a stress-related cause of TTS lived in stressful circumstances long before the onset of TTS.5,6
Key Point The popular use of the term ‘broken heart syndrome’ and the characterisation of TTS as a condition associated with lost love or loss of a loved one is also not helpful in TTS being recognised as a serious condition that has many triggers other than emotionally stressful events. Many women with TTS believe that their condition is not taken seriously by clinicians (and the community in general) because of perceived stigma attached to emotional stress, anxiety or other mental health conditions in women.7 Experiences shared by members of the Takotsubo Support Group suggest that these beliefs are not unfounded, and this needs to change. Whether the trigger for TTS is an emotional or physical stressor, TTS is potentially a life-threatening condition with potential for ongoing debilitating symptoms and TTS recurrence.
NOT all people with Takotsubo syndrome recover within a few weeks or months
It is often assumed by clinicians that echocardiographic evidence of a return to low normal left ventricular ejection fraction (LVEF) soon after acute TTS represents a return to normal function. Consequently symptoms of extreme fatigue, breathlessness, chest pain or palpitations experienced by people in the weeks/months following the acute episode of TTS are often dismissed as anxiety. Scally and colleagues8 have recently shown that TTS is associated with long-lasting clinical and functional changes characterised by impaired cardiac energetic status and reduced maximal oxygen consumption on exercise because of significant cardiac limitation. Patients with prior TTS have persistent limiting symptoms and reduced exercise
capacity associated with long term structural and metabolic alterations in the myocardium that progresses to a persistent heart failure phenotype. The study authors conclude that patients should be counselled regarding the long term symptomatic consequences of TTS.8
Presentations to Emergency Services
A recently published retrospective observational study9 of 61, 412 patients with TTS found that approximately 12% of patients with TTS were readmitted to hospital within 30 days of the acute event. More than half of all readmissions (64.5%) occurred within the first 2 weeks. 10 People with TTS are often told that it is a benign condition from which they will recover in a short time. For some people, this is the case, but for many, ongoing symptoms of chest pain, breathlessness, debilitating fatigue and palpitations compound fear, anxiety and uncertainty.
Presentations to emergency departments (EDs) with ongoing or new symptoms following a TTS event often result in an unsatisfactory experience. In some cases, ambulance and ED personnel have never heard of TTS, or if they have, they do not view it as a serious condition. In other cases, people are dismissed as just being anxious. There are many accounts from members of the Takotsubo Support Group (TSG) that detail these experiences and the impact that it has had on them.
Takotsubo syndrome is NOT a single occurrence for many people
Some people do get recurrent TTS, and rarely these are multiple recurrences. Recurrence rates have been estimated to be between 1 and 11.4%,11 but the follow up times have been variable. Fear of recurrence, particularly for those who have had a cardiac arrest or other complications, is a source of anxiety for people with TTS, especially given that there is no preventive therapy and the unpredictable nature of causality.
1Schubert, S. C., Kucia, A., & Hofmeyer, A. (2018). The Gap in Meeting the Educational and Support Needs of Women with Takotsubo Syndrome Compared to Women with an Acute Coronary Syndrome. Contemporary Issues in Education Research, 11(4), 133-144. https://files.eric.ed.gov/fulltext/EJ1193205.pdf
2Akashi, Y. J., Nef, H. M., & Lyon, A. R. (2015). Epidemiology and pathophysiology of Takotsubo syndrome. Nature Reviews Cardiology, 12(7), 387-397. https://www.nature.com/articles/nrcardio.2015.39
3Redfors, B., Vedad, R., Angerås, O., Råmunddal, T., Petursson, P., Haraldsson, I., Ali, A., Dworeck, C., Odenstedt, J., Ioaness, D. and Libungan, B., 2015. Redfors, B., Vedad, R., Angerås, O., Råmunddal, T., Petursson, P., Haraldsson, I., … & Omerovic, E. (2015). Mortality in takotsubo syndrome is similar to mortality in myocardial infarction—a report from the SWEDEHEART registry. International Journal of Cardiology, 185, 282-289. https://doi.org/10.1016/j.ijcard.2015.03.162
4Templin, C., Ghadri, J. R., Diekmann, J., Napp, L. C., Bataiosu, D. R., Jaguszewski, M., … & Lüscher, T. F. (2015). Clinical features and outcomes of takotsubo (stress) cardiomyopathy. New England Journal of Medicine, 373(10), 929-938. https://www.nejm.org/doi/full/10.1056/nejmoa1406761
5Wallström, S., Ulin, K., Määttä, S., Omerovic, E., & Ekman, I. (2016). Impact of long-term stress in Takotsubo syndrome: Experience of patients. European Journal of Cardiovascular Nursing, 15(7), 522-528. https://doi.org/10.1177/1474515115618568
6Delmas, C., Lairez, O., Mulin, E., Delmas, T., Boudou, N., Dumonteil, N., … & Carrié, D. (2012). Anxiodepressive Disorders and Chronic Psychological Stress Are Associated With Tako-Tsubo Cardiomyopathy–New Physiopathological Hypothesis–. Circulation Journal, CJ-12.https://www.jstage.jst.go.jp/article/circj/advpub/0/advpub_CJ-12-0759/_pdf
7Curragh, C., Rein, M., & Green, G. (2020). Takotsubo syndrome: voices to be heard. European Journal of Cardiovascular Nursing, 19(1), pp. 4–7. https://doi.org/10.1177/1474515119886078
8Scally, C., Rudd, A., Mezincescu, A., Wilson, H., Srivanasan, J., Horgan, G., … & Dawson, D. K. (2018). Persistent long-term structural, functional, and metabolic changes after stress-induced (Takotsubo) cardiomyopathy. Circulation, 137(10), 1039-1048.https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.117.031841
9Smilowitz, N. R., Hausvater, A., & Reynolds, H. R. (2019). Hospital readmission following takotsubo syndrome. European Heart Journal-Quality of Care and Clinical Outcomes, 5(2), 114-120.
10Kato, K., & Templin, C. (2019). Escape from the takotsubo octopus trap: liberation often temporary and readmission rates high., European Heart Journal – Quality of Care and Clinical Outcomes, 5(2), pp. 88–89, https://doi.org/10.1093/ehjqcco/qcy059
11El‐Battrawy, I., Santoro, F., Stiermaier, T., Möller, C., Guastafierro, F., Novo, G., … & Akin, I. (2019). Incidence and clinical impact of recurrent takotsubo syndrome: results from the GEIST registry. Journal of the American Heart Association, 8(9), e010753.https://www.ahajournals.org/doi/full/10.1161/JAHA.118.010753