Takotsubo

[Louvi]

Good evening. I am new here, and was wondering if anyone has or has Takotsubo.

[Silvertail]

Yes, I've had four diagnosed episodes. Possibly other small ones. How can I help?

[Louvi in reply to Silvertail]

Wow four. My two are exactly one year apart. I had the angiogram on Thursday to rule out a heart attack again, which was the same result as last September, all clear. The cardiologist who did the angiogram told me I should take anxiety tablets and go on HRT. I was in Epsom Hospital, but had to be taken to king’s college for the angiogram. Back in Epsom I was discharged yesterday 6th. And my cardiologist does not agree with the anxiety tablets and HRT. I am confused with the difference of opinions between the Doctors. And my cardiologist said he is very concerned as it is not common to have Takotsubo more then once. So I am intrigued to hear you have had it four times. I also went to my Gp about three times over the last couple of months as I didn’t feel right, and asked if it could be the Takotsubo, but my doctors didn’t seem to know anything about the condition. Also as soon as my heart went back to normal size last time I was taken of all medication apart from candesartan. About six weeks after. So I would be interested to know of your experience with recovery. Thank you

[Silvertail in reply to Louvi]

Happily, takotsubo seems to be well-known here in Brisbane. In fact, my husband's cardiologist has takotsubo stated as one of his interests in his bio. Incidentally he has also worked at the Royal Brompton Hospital in England so would know Dr Lyon.

Beginning in 2012 my first two were caused by severe emotional stress/worry - my daughter's DV situation coming to a head -, then the next two after severe falls when I landed with my face on concrete (don't ask me why I don't put my hands out to save myself ???). Last one was 2022. I have recovered reasonably well after each, although I do have some residual problems so am on medication for life. I am recalled for yearly echos and BP monitored by GP. Previously, I have often had TTS-like episodes when I have had to perform music/speak in public. I would develop severe chest pain which subsided shortly afterwards, therefore did not seek medical help.

As fishonabike says, there is a great Takotsubo Support Group on FB with heaps of information in the files.

[Louvi in reply to Silvertail]

Thank you so much for taken the time for me. As I am feeling a bit low at the moment. I will go onto Facebook and look. I pray you have no more episodes and have a happy healthy future. Much love and best wishes to you and your family.

[Silvertail in reply to Louvi]

Thank you so much, Louvi, and I wish the same for you. 💖🌺

[Chembris24]

My mother had it 2 years ago. Recovery was very good. What would you like to know?

[Milkfairy Heart Star]

Hello,

Welcome to the forum.

I don't have a direct lived experience of Takostubo syndrome. I was suspected of having the condition many years ago.

I was later diagnosed with another rare heart condition.

Hopefully fishonabike will be along as she is very knowledgeable.

In the meantime you might find some more information from Cardiomyopathy UK

cardiomyopathy.org/about-ca...

They hold online support sessions for people with Takostubo syndrome

cardiomyopathy.org/takotsub...

This group was established by several patients with a lived experience of Takostubo syndrome.

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

If you are on Facebook you might like to join their Facebook group

facebook.com/groups/Takotsu...

[Louvi in reply to Milkfairy]

Thank you

[fishonabike]

I have had one episode of Takotsubo and am a member of the facebook group mentioned by Milkfairy - there is also a website takotsubo.net/ which has helpful info for people affected by Takotsubo and professionals

if there is anything specific you want to ask just ask here or join the facebook group (it is for members only and the moderators are very supportive)

[Louvi in reply to fishonabike]

Thank you

[fishonabike in reply to Louvi]

many cardiologists have seen very few people with Takotsubo, some have seen none - but they seem to find it difficult to admit that they know little or nothing about it - many claim to be au fait, but are woefully out of date - i strongly recommend joining a specialist group or asking questions here of the members who have experience of he condition, at least you will get first hand experience from us and some of us are very well informed