Takotsubo Cardiomyopathy

[Lesmis85]

Does anybody have this condition? I was diagnosed with it very recently although I've suspected having it for many years. The meds control my blood pressure, which was spiking more and more frequently to over 200 systolic, and I'm not so breathless but I still feel unwell quite frequently, presumably due to adrenalin rushes. This can happen in social situations as well as worrying events.

Please can anyone suggest anything I can do to help relieve the unpleasant symptoms of Takotsubo cardiomyopathy such as panic, malaise and lack of energy.

[Silvertail]

Yes I've four episodes that I know of. Two from severed emotional stress and two after physical stress (falling on my face on concrete.) Despite being on maximum heart failure it didn't prevent the last two.

[Shuaholic]

Hello, yes I too have Takosubo cardiomyopathy, diagnosed 3 years ago due to a very painful divorce. I am on Bisoprolol and Ramipril, and these meds are keeping my high blood pressure stable and keeping me going in general. I run (al be it slowly) as my de-stress mechanism but after seeing your age it’s not possible for you but can you still get out to walk? You need to try and find something that you get totally engrossed in to ease you out of your panic attacks etc,. I am sorry I haven’t got any other help to offer and wish you luck. Stay safe. X

[Danceawaytheblues]

Hi Lesmis85, I have had two episodes of Takosubo one in 2002 (mild) and a more severe one in 2022. I am now 78 and doing ok. There are times when I get very tired, but I guess as you get older that`s to be expected. I still love going for walks and have an exercise bike which I use every day. I just take one day at a time. Best wishes to you. Marianne.

[fishonabike]

I just wrote you a long answer with lots of information, but left the page to get some info and the whole thing disappeared!

Anyway, i am a member of a very helpful Facebook support group for people with Takotsubo, there is always someone there - we also have a very informative website at Takotsubo.net (takotsubo.net/information/a... i suggest you go and look at the info there soon)

Cardiomyopathy UK also have an online support group which meets occasionally, the next meeting is in November, more info here

cardiomyopathy.org/takotsub...

Takotsubo Cardiomyopathy is a fairly uncommon condition which was only recently identifed (although it has been around for ever). There are very few cardiologists with extensive experience of the condition and no agreed treatment protocols, so most cardiologists treat the symptoms but cannot treat the root cause which is unknown.

Takotsubo can be triggered by a number of underlying conditions or events, most people recover from an episode well, but some can be left with ongoing damage and a few people have repeat episodes. If this happens it is important to investigate further for underlying conditions.

You don't say much about how you were diagnosed, did you have an episode which meant you ended up in hospital? it is very difficult to diagnose Takotsubo long after it happened and your symptoms sound as thoughthey could be caused by a number of other conditions which could trigger a Takotsubo episode, so i feel it would help you to find out more and get better support from a cardiologist and GP.