takotsubo cardiomyopathy

[Barryjp]

hi I was diagnosed with this in early December now on medication waiting for rehab

I would be interested in hearing anyone else’s story with this condition as currently my progress is slow

Thank you

[Silvertail]

Hi. I have had four diagnosed episodes of TTS, first one in 2012 when I was 72, and fourth in 2022 but am stable on medication and living a normal life at the moment. I have an echocardiogram and cardiologist appointment yearly unless any worries. First two were from severe emotional distress having to get my daughter away from a DV situation and last two from physical stress after bad falls. You can recover completely from this and have only one episode, or occasionally more episodes, but sometimes you can be left with problems. Your heart usually returns to proper shape fairly quickly, but it sometimes takes longer to recover your energy and previous health than doctors would have you believe. You need to rest and not push yourself. I had microvascular disease and a PFO and atrial aneurysm before TTS and have been left with LBBB, moderate mitral regurgitation, mild tricuspid regurgitation and some hypokinesis since, but the cardiologists don't seem to bother about these, just tell me to keep on taking the medication and come back next year! 😊 There is an excellent Takotsubo Support Group on Facebook. It has a Files section, with heaps of verified information and you will find excellent support from members. facebook.com/groups/1699802.... Wishing you all the best for a complete return to good health. 🌺

[PorridgeForMe]

Hello Barry - I hope it is OK to refer to you in this way.

I was diagnosed with Dilated Cardiomyopathy (DCM) over 12 years ago.

I believe that the early symptoms of DCM are very similar to Takotsubo.

Are the doctors totally convinced that you have takotsubo and not DCM.

In the early days it probably does not matter that much as the medication is much the same for both conditions.

But I think that is important to know which one it is - as the "recovery" period and pathway is different for each one.

In my case my the symptoms of the DCM did subside very quickly - but it took about 15 months before the hospital HF nurse team signed me off.

And I think I could say that at the age (now) of 77 (going on 78) I am still on a recovery route. Every few years the medics come up new drugs.

To be honest - I would say that if you were diagnosed just a few weeks ago (December 2024?) then you might well find that in the first few months of 2025 progress will be slow.

Just follow the doctors advice - and do not try to do too much at first.

If you have any further questions just ask.

Anyway - I hope these comments from me help.

A Happy New Year from Mike.

[fishonabike in reply to PorridgeForMe]

There are a few points here which I would like to pick up on

The symptoms of acute onset DCM can be similar to Takotsubo Syndrome (TTS), but the symptoms of TTS is usually more similar to myocardial infarct (MI) or other Acute Cardiac Syndromes (ACS)

Also DCM is usually seen as a chronic (long-term) condition whereas TTS is mostly acute (short-term) as most people recover and do not have ongoing issues as a result

It used to be thought that everyone recovered fully from TTS, with no ongoing issues, but this is now known not to be the case

The medication for TTS is much the same as for DCM because at the moment ther is not evidence based, agreed treatment protocol - so TTS treatment is often the same as for ACS or whatever the treating Cardiologist seems appropriate, and sometimes these standard protocols are not appropriate, depending on whether or not complication require different treatment

Furthermore many doctors do not realise that the recovery process after TTS may be very slow and gradual, so they advise a rapid return to activity, which patients often find impossible - many would be better advised to take things gently and be guided by how they feel, probably more like recovery after acute onset DCM

[PorridgeForMe in reply to fishonabike]

Hello,

Yes - I agree with everything you say.

I like this paragraph...

"Furthermore many doctors do not realise that the recovery process after TTS may be very slow and gradual, so they advise a rapid return to activity, which patients often find impossible - many would be better advised to take things gently and be guided by how they feel, probably more like recovery after acute onset DCM".

I think that all HF and Cardiomyopathy patients should take up (or return to) exercise at their own pace.

And I like the phrase you use - "acute onset DCM". I have not seen it before.

I think it could be very well used to describe what happened to me back in 2012 - at the end of the February I could cycle 13(+) miles along routes involving steep hills.

But by Mid-April I was finding stairs difficult. I was diagnosed with DCM at the start of the June. And put on ACEI/BB medication.

Within a few weeks I was feeling a lot better - but it was not until late 2013 that I got back on my bike. I was then able to tackle steep hills again.

There is still a lot of debate amongst cardiologists about exactly what DCM is. And whether it is a form of HF or just some sort of syndrome that can, in some people, cause one of the forms of HF such as HFrEF or HFpEF.

Have you watched the You Tube videos from Dr Brian Halliday?

And have you come across this...

academic.oup.com/eurheartj/...

I like the use of this wording...

"In particular, it is recognized that many patients have a long preclinical phase

characterized by few if any symptoms and minor cardiac abnormalities

that fall outside current disease definitions."

For many decades before I was diagnosed with DCM in June 2012 I knew that something was not quite right. But I was always sent away by the medics - they said that they could not find anything wrong.

Anyway - that is where I have got to in my understanding of DCM - do you have anything to add to what you have already said?

Must finish now - it is time for me to take one of my pills,

Mike.

[fishonabike in reply to PorridgeForMe]

I know more about TTS than DCM because I had an episode of TTS - but there is still a lot to be discovered about both conditions - there is also a lot of overlap between various conditions but this is often ignored by medics who have to stick to their protocols (grrrrrrr😠)

TTS was only recognised as a distinct condition in Japan in the early 1990s, it took 10 years for the info to reach the west, so it is still a relatively new condition although it has been happening forever.

I am glad for you that treatment has helped and that you are taking an active interest in your own and other conditions. A group like this benefits from having lots of "expert patients" with a range of conditions.🙂🌺

[fishonabike]

I had Takotsubo 10 years ago and, like Silvertail am a member of the Facebook support group.

I recovered well, despite an early complication, but would advise a very gentle return to normal activity levels.

Rehab is helpful but the exercise/activity part needs to be tailored to you needs as recovery is different to recovery after a heart attack - the damage to the heart is different

I would suggest you also join the Facebook group for more specific support. There is also a good website Takotsubo.net, which has information and stories from people who have had takotsubo.

Please take it gently as recovery is often much slower than the doctors predict, also I hope you are not driving unless your Ejection Fraction has been shown to be above 40%. (A DVLA condition for driving). You may not even have been told about this, most of us aren't in the UK. Your GP should have access to that info.