Takotsubo cardiomyopathy/Broken heart syndrome

[GreenGarden19]

Hi there, I'm new here after my cardiologist says I've potentially had Takotsubo syndrome. Has anyone else had this at all and did you recover well? In particular anyone who was diagnosed a while ago, have you had repeat episodes or any further issues? I'm reading conflicting peer reviewed medical papers that say you will make a full recovery but others saying you may go on to have heart issues to due to muscle damage, blood clots etc.. Thank you.

[BeKind28-]

Hello

I am sorry to read your diagnosis and I have read on here of people been diagnosed in the past with this and have gone on to make a good recovery

I think we are all individuals though and recovery can be different for each one but try and focus on the positive outcome and be reassured they will keep a close eye on you

I hope those that have had this diagnosis will come across your post and be able to share their experiences with you x

[GreenGarden19 in reply to BeKind28-]

Thank you so much for your reply. As I'm sure you understand I'm very anxious about it, having anxiety anyway does not help and this has taken it to another level. I'll try and find some replies on other chats.x

[BeKind28- in reply to GreenGarden19]

Hello

Yes I do understand the anxieties and after my heart attacks and triple bypass my anxiety to has gone to another level so I get how that feels to

I hope you find some posts there are some on here somewhere or maybe if not you could post again sometimes if lots of people post quickly then posts drop down and not everyone spots them so always worth doing another one and hope someone that has the same notices it x

[GreenGarden19 in reply to BeKind28-]

Thank you for your advice on posting. Once I've seen my cardiologist again I might do another post. I hope your health is ok at the moment. In the meantime I'm thinking of going a CBT course, specifically by a cardiac psychologist, hopefully will help.

[BeKind28- in reply to GreenGarden19]

Hello

I suffered with anxiety before my heart attacks and Bypass operation and I have to say since I do struggle

I am speaking to a phycologist at the moment and I think you considering a CBT course would be a really good idea as I say what do we have to lose by trying these things

I hope you do another post after you have seen your Cardiologist again it would be nice to see how you get on x

[GreenGarden19 in reply to BeKind28-]

I will of course do another post, hopefully might help someone else too. I did have an echocardiogram with a wonderful doctor who really put me at ease, actually I've been lucky with most of the GP's/docs so that has really helped in knowing I'll be looked after but still an awful underlying sense of unease. It's only been a matter of weeks though. Thank you again for your replies.x

[BeKind28- in reply to GreenGarden19]

Hello

It is nice to hear you have had some lovely Doctors it can make a big difference in helping us cope

Most of us wjat ever heart issue we have I think have that sense of unease and it is normal until we gain our confidence back everything is going to be ok and you will be ok x

[Milkfairy Heart Star]

Hello,

Many years ago I was thought to have had a Takostubo syndrome event.

I was later diagnosed with another rare heart condition, vasospastic angina.

There is another member fishonabike who has a lived experience of Takostubo syndrome and hopefully she will respond to your post.

In the meantime if you are on Facebook there is a really good support group you might like to join.

facebook.com/groups/Takotsu...

There is also these websites that you may find helpful too.

takotsubo.net/people-with-t...

cardiomyopathy.org/about-ca...

[GreenGarden19 in reply to Milkfairy]

Hi Milkfairy, Thank you for your reply and the links, I've come across the Facebook group whilst researching, alas I'm not on Facebook but might join just for this.

I wonder if my CT angiogram will pick up anything differently to what the cardiologist thinks it is. I've had weird goings on with the heart for a few years but nothing like recent episode. There were a couple of bits picked up on ECG - slight ST lateral depression and inferior TWI, all mean nothing to me.

Thank you again!

[Milkfairy Heart Star in reply to GreenGarden19]

A CT angiogram can detect pernament blockages of the coronary arteries.

Tests such as a Cardiac perfusion MRI or echocardiogram can be helpful to diagnose Takostubo syndrome.

You can also have chest pain or breathlessness without blocked coronary arteries due to microvascular or vasospastic angina.

My vasospastic angina is due to transient constrictions of my coronary arteries. I often have ST depressions and T wave inversions on my ECGs when I have severe episodes of coronary vasospasms.

Microvascular angina is thought to be due to the inability of the small blood vessels of the heart not working properly.

It might help keeping a diary of your symptoms and discussing with your Cardiologist whether microvascular or vasospastic angina maybe causing your symptoms.

These types of angina are often overlooked and effect women more often than men.

It can be difficult to tell a Takostubo syndrome event from a severe episode of coronary vasospasms.

The BHF has this information about microvascular and vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

[GreenGarden19 in reply to Milkfairy]

Good idea on keeping a diary, I've got my blood pressure readings in a spreadsheet so can add symptoms as well. Thank you for the links, I'll take a look at those in the morning and I'll definitely speak to cardiologist about them. I do wonder if I'm having spasms as sometimes I get a little 'jump' in my chest mainly at night.

Fingers crossed all will be sorted/properly diagnosed.

[Gilldy]

Hi - 16 years ago I had a sudden cardiac arrest which was thought to be taketsubo. I had a lot of complications at the time and not as much was known about taketsubo then so I never got a definite diagnosis. Since then I had a stroke 8 years ago from which I made a full recovery.

Two weeks since now I had a second taketsubo event. This was a relatively mild heart attack. I've had an echocardiogram and an angiogram which both point to a taketsubo event but I'm waiting for a cardiac MRI on 2nd May to be sure. There's the possibility of microvascular angina either. It says on my discharge letter that the diagnosis is either taketsubo or minoca. (Wonder if they've spelt it wrong as its supposed to stand for myocardial infarction no cardiac occlusion I think)

I am apparently that rare person who has had more than one event.

I would say that the worse part of all this has been anxiety. It pushes my blood pressure up which makes me more anxious.

I would advise anyone in this situation to acknowledge they have anxiety (I wouldn't believe it) and get it treated.

[GreenGarden19 in reply to Gilldy]

Hi Gilldy, apologies for late reply, I've only come back on here today, had a few episodes of severe palpitations in-between trying to do my day job so not been online much. I'm sorry to hear you are having repeat episodes, it's all very worrying. I'm currently seeing a counsellor (6 sessions in) for a lifetime of deep seated anxiety due to trauma. I've been burying it for nearly 48 years and look where it has got me wishing you a speedy recovery.