Takotsubo cardiomyopathy

[Cymrucurious]

So .... I was minding my own business when my heart broke ... literally!

My cardio rehab nurse pointed me in the direct of the group for moral support and online friends in a similar situation. ... so hi I hope I'm in the right place?

Wondered if there's any other folks out there who share my diagnosis of takotsubo or broken heart syndrome?

Its certainly been a very humbling and frightening experience, I've been very fortunate but the whole experience has shaken me up,

( I have a brain injury that contributes towards my confusion)

So the whole experience has certainly made me count my blessings, to live a more considered lifestyle and has generally been a huge eye opener!

I've enjoyed reading other posts in the group and looking forward to joining ...

Wishing you all well x

[Tos92]

Hi Cymrucurious

Welcome to the forum :).

I do not have this particular heart condition; however, there are others on this forum that do and I hope they can help and be of some support to you.

It is scary being diagnosed with a heart condition out of the blue, as I was in a similar position with my diagnosis over a year ago and still find it hard to come to terms with on some days.

However, you may find that people on this forum make having a heart condition slightly better to cope with when being faced with dealing with it alone.

All the best. Tos x

[Cymrucurious in reply to Tos92]

Thank you for the welcome Tos I'ts good to have this forum to share experiences and support each other ... good to hear from you

Hope today is a good day x

[Milkfairy Heart Star]

Hello,

Hopefully fishonabike will be along to share their experiences of living with Takostubo syndrome/ Cardiomyopathy with you.

In the meantime if you are on Facebook, there is a very supportive group which you might like to join.

facebook.com/groups/Takotsu...

Cardiomyopathy UK has some information too.

cardiomyopathy.org/about-ca...

[Ramilia]

Hi Cymrucurious

I'm sorry you've suffered a Takotsubo event. Despite it being described as a relatively rare condition, there are actually a fair number of us! I know, though, that you will be feeling lost and confused at the moment, and probably fatigued, and perhaps suffering from disconcerting chest twinges, and if you are on the usual array of medication (or on none), you are probably wondering what that is all about.

Well, there is help out there, not only on this forum, but on the links Milkfairy has given you. fishonabike , who Milkfairy mentioned, is extremely knowledgeable about Takotsubo.

I hope you start to recover soon.

[Milkfairy Heart Star in reply to Ramilia]

Ramilia I am so glad you replied to Cymrucurious

I was trying to remember your profile name.I'll remember for next time 😊

[Cee-Cee1]

I'm afraid I don't have any experience with Takotsubo syndrome Cymrucurious, aside from information I've gained from reading posts on the forum, so can't help with that but I'm sure someone with more experience will be along soon. Just wanted to send you a warm welcome - this is a great site to belong too I've found everyone on the forum to be so friendly and helpful, Carol

[Hidden]

Dear You,

A warm welcome to the forum, I hope it will be as supportive and informative to you as it has been to me and many many others.

The main thing we can help you with is to show and tell you that you are not alone.

Takotsubo { Thank goodness } is beginning to be fully recognised by up and coming Cardiologists and their teams.

This was not so not so many years ago.

There are a few sufferers on here that hopefully will give you their in site on how they live this syndrome .

My heart is broken by other means, but it can still feel for you and your journey.

Take care and please keep us informed

[fishonabike]

Hello and I hope you are making a steady recovery after your episode of Takotsubo - it often come as a bolt from the blue and leaves many shocked and confused - I can understand your need to find others to share this with - my own episode was almost 9 years ago and i was very pleased to find online support as no-one i knew had even heard of the condition

The good news, as others have pointed out, is that there is a lovely supportive Facebook group you can join - members there all have experience of this condition and try to keep up with current information and research - you would be made very welcome - i hope you find your way there soon

the other good news is that most people recover well, although medical support for those with ongoing issues or complications is patchy - most doctors (including cardiologists) know little about the condition as it is fairly uncommon

You mention a cardio rehab nurse, so you are lucky as many are not offered this type of support after Takotsubo - I hope that you are getting helpful advice and support from that source

There is also a website for people affected by Takotsubo as well as professionals - Takotsubo.net: takotsubo.net/

[CEDAR0902]

I suffered with or suffer from Takotsubo cardiomyopathy. In 2021 I had endless stressful events, 2 house moves, my mum passed away, my partner was diagnosed with heart disease and the bolt straight into my heart was that my daughter was raped by 2 scroats..I'm just about to start on entresto following a further echocardiogram and ecg, bloods etc.. The cardiologist explained it all to me and the stress triggered it all. I'm not too bad now. Thought it was a panic attack initially..I even told the paramedics that when I was en route to the hospital..

[Cymrucurious]

Gosh ... im blown away, huge thanks to each and every one of you for taking the time and care to reply so comprehensively... absolutely beyond my expectation!

I will read and digest all the fantastic messages, it might take me a while 🤣

I'm so grateful for this support and wish you all a healthy Monday x

[Silvertail]

Hi there Cymrucurious. I'm sorry to hear you are in the tako club. It's a shock at first, but most people recover well from it in a short time. Some still have symptom for longer. I have had takotsubo four times since 2012, all from severe stress - twice from emotional stress over having to get my daughter out of a DV situation, and the last two after physical stress - really bad falls on my face. My cardiomyopathy is stable now thanks to medication so I hope you will be the same. We need to live less stressful lives - easy to say, but not so easy to follow, is it? If you are offered cardiac rehab, do take it on. It helps your confidence to realise that you can exercise, etc. My best wishes for a complete recovery for you. xx

[Cymrucurious in reply to Silvertail]

I'm so grateful to read your story and for your kind words Silvertail ... I pray that you never have another takotsubo experience ... ever I've been fortunate with regular cardiac rehab and general follow up support / medication reviews .. it's a postcode lottery I gather.

I'm well on the road to recovery now thankfully nearly three months on, we are so very appreciative of the dedicated Drs and nurses involved in my care

Today was a good day xxx

[Silvertail in reply to Cymrucurious]

I'm happy to read that you are recovering well. Doctors are getting more and more knowledgeable about TTS now. When I had my first, my GP had never heard of it.. Thankfully, the cardiologists did. xx

[Walkswim]

My GP suggested I might have stress heart or takusubo - but have not had an extreme broken heart incident but more ongoing stressors - waiting for more discussion