FAQs

About TTS

Throughout history, there have been stories that have linked emotional stress or an emotional event with abnormalities in the way the heart functions.  These abnormalities range from the heart beating faster, a sensation of the heart pounding, chest pain, abnormal heart rhythm and sudden death. Takotsubo syndrome (TTS) has likely always existed, but we have only recently recognised it.  We have heard stories of “dying of a broken heart” or being “scared to death” but these stories have been considered more of a myth than truth.  Stories, and even publications describing the signs and symptoms that we see in TTS have been available for many years.

With the development of new medical imaging techniques, it has become possible to see more of what is happening in the living heart, and several new cardiac conditions have been easier to recognise.  TTS is one of these.

TTS was first recognised in 1990 by Japanese researchers.  This discovery was published in Japanese language journals, so it took another 10 years for TTS to be recognised and accepted in Western countries.

Everyone experiences some degree of stress during their lifetime, but not everyone has an episode of TTS. People respond differently to stress, and it would appear that our bodies also respond differently to the physiological changes that occur in response to stress.

Researchers have for a long time suspected that there is a brain and heart interaction that has a role in the development of TTS. A recent small but promising study by Swiss researchers showed that compared with people with no history of TTS, people with TTS have altered function in areas of the brain that control emotions and the autonomic nervous system (responsible for heart rate and the ‘fight or flight’ response).

Although this does not provide a complete answer, and it is not certain whether these  altered functions are a cause or effect of TTS, it is an important piece of the puzzle and provides a direction for further research

Recovery from TTS

Many people report extreme fatigue that may last for a few days to months after the acute episode of TTS. Often, the cardiologist will tell them that their heart has returned to normal shape and function.

In most cases the test that is used to judge whether the heart has returned to normal is the echocardiogram. The heart is deemed to have returned to normal if it appears to be a normal shape and the ejection fraction (EF) is greater than 50-55%.

However, EF is only an approximate measure of heart function because a standard echocardiogram does not show all the motions of the heart. An echocardiogram shows how well the heart empties when the left ventricle contracts, but it does not show the twisting motion like ‘wringing out’ which helps the efficiency of emptying. In TTS this motion is impaired and this may persist for some months following the acute episode of TTS.

Specialised magnetic resonance imaging (MRI) studies have shown that there is oedema (fluid and swelling) in the heart muscle affected by TTS at 3 months after the event. This ties in with blood tests that have detected inflammation. Oedema and inflammation can affect how well the heart works.

Some people will have raised levels of a marker of heart failure (NTproBNP) for many months after TTS.   Not all cardiologists offer this test which can help to explain some continuing symptoms.

Health professionals need to understand that a ‘normal’ ejection fraction does not mean that the heart function has recovered completely. They also need to understand that there are more tests available which can help to understand ongoing symptoms so that patients can get the right treatment. Sometimes we have to gently point the way for them.

Recovery time is different for everyone. Some people recover very quickly whilst some report feeling unwell for many months after the acute episode of Takotsubo Syndrome (TTS). For people with other underlying medical conditions, this may also result in delayed recovery and this can impact on quality of life.

Cardiac rehabilitation (CR) is most commonly offered to patients after an acute coronary syndrome (heart attack/angina) due to cardiovascular disease (CVD). For this group of people, CR has been shown to decrease rates of death and disablement and improve quality of life. The goals of CR include:

  1. establishing a plan to help you regain strength,
  2. preventing your condition from worsening,
  3. reducing your risk of future heart problems, and
  4. improving your health and quality of life.

The main components of CR are secondary prevention strategies (actions to reduce the risk of a further cardiac event by minimising the impact of cardiac risk factors) and an exercise program, but currently there is no evidence about benefits of CR for people with TTS.

CR is sometimes offered to people with other cardiac conditions (including Takotsubo Syndrome) in some institutions.

There are some reasons why CR may be of help for people with TTS, and reasons why some aspects of CR would not be of direct benefit.

The secondary prevention role of CR is to help people reduce risk of CVD recurrence by addressing CVD risk factors.  CVD occurs due to atherosclerosis (which causes blockages in the arteries of the heart that can lead to a heart attack). Risk factors associated with the development of atherosclerosis are advanced age, family history of CVD under 65 years of age, smoking, high blood pressure, high cholesterol, diabetes, obesity,  and stress (including anxiety and depression). With the exception of psychological stress, there is currently no evidence of an association between these traditional risk factors for cardiovascular disease and TTS, but reducing the risk of CVD improves overall health. It is also important to be aware that some people with TTS may also have CVD.

The exercise component of CR may help people with CR to gain confidence in undertaking physical activities, and exercise is also a great way of reducing stress. The experience of members of the Takotsubo Support Group (TSG) shows that some find the exercise program is helpful, and others find that it makes their symptoms worse. It is likely that this depends upon how advanced they are in their recovery from TTS and timing of the CR program after the TTS event.

CR could be tailored to meet the needs of people with TTS, providing that the health professionals involved  have a good understanding of TTS.  CR could help people with TTS receive up-to-date and accurate information about their condition. Currently this is often not offered and increases stress and anxiety for people with TTS.

Research is needed to ascertain the benefit (or otherwise) of the exercise-based component of CR for people with TTS.

If you are  offered CR it might be a good idea to ask:

  • whether it is designed to meet your specific needs or if it is a general programme for people with a range of different heart conditions
  • whether or not you can start CR when you feel ready to do so.

In some countries the availability of CR is variable and it is not offered to all patients with heart complaints. Unfortunately, in countries where insurance is needed to pay for medical treatment, CR for TTS is not always covered.

To date there is no research to guide much information or research evidence to guide recovery strategies after a Takotsubo event. The experience of members of the Facebook Takotsubo Support Group (TSG)  suggests that the following points may be helpful.

During the early days rest is very important. Limit your activity and avoid pushing yourself. Returning to your normal activities should be guided by how you feel. If you get tired, then you should rest and gradually build up your activity as you can.

You may feel afraid to return to your normal activities. By building your activities gradually, as guided by your levels of fatigue, you could avoid the “boom and bust cycle” which can feel like failure. Building on success is more encouraging.

If you do start to feel disinterested or abnormally afraid of activities, it may be that you have an element of depression or anxiety, and you should see your doctor about this. It is not unusual after TTS to feel this.

Join the Facebook Takotsubo Support Group (TSG). Hearing about the experiences of others and getting their advice and encouragement can really help.

See the page on this website about stress and relaxation.

Thanks to Eva Cantin for her contribution and editing in this section.