Takotsubo Cardiomyopathy

[Quaddie]

Hi again, I saw a nhs cardio rehab nurse who said she was at a loss where to go with me as I was a takotsubo patient and she normally saw people with stents and pace makers. I was made to feel like it was a psychological illness and therefore needed no follow-up treatment 😒. The nurse did apologise and said she needed to speak with the cardiologist who originally treated me back in October and woukd come back to me later this week.... Wish i could speak to him now too. I am awaiting to do that at my outpatients apt which will be a telephone call on 19th December. That apt was a waste of time despite apologies.

[Silvertail]

When I had my first episode in 2012, my GP had never heard of it. It's so annoying when they make little of it. Mostly you recover from it but also you can die from takotsubo - it's rare, but does happen. You can have permanent damage to your heart. What annoys me most is when they call it 'broken heart syndrome'.

[Rednight]

hi,I have found phone appointments at wast of time in the past.I now ask for face to face and have always been sorted.I would ask your cardiologist he should sort something.

[Quaddie in reply to Rednight]

Cant get hold of him he works between 2/3 hospitals I will try again though via secretaries answerphone thanks

[Shar28]

Hi, have you discovered Cardiomyopathy UK? They’re a brilliant charity who specialise in all types of cardiomyopathy. Their nurse-run helpline is fantastic. Heres the link

cardiomyopathy.org

They can help in all sorts of ways and may be able to point you in the direction of a specialist in your condition.

Best of luck in getting the care you need. .

[Quaddie in reply to Shar28]

Thank you I have now joined.

[fishonabike]

hi Quaddie - i had Takotsubo a few years back and found a wonderful groupo of Facebook which is really helpful - Takotsubo Support Group - they also have a useful website: Takotsubo.net which has good info for people with Takotsubo and medical professionals

unfortunately this is not a common condition, it was only recognised fairly recently and there are no specific evidence-based protocols for treatment, rehab etc - so you can feel a bit out in the cold - i really recommend th facebook group for helpful support though

recovery is usually good but can take much longer than the hospital doctors suggest - i hope you were told to rest as that is important in the earlly stages

how are you feeling generally? please ask if you have any questions, i will try to answer or point you in the direction of helpful info

[Quaddie in reply to fishonabike]

Hi can't recall if I replied to your message above. Thank you I have joined tge on line TSS group and Takosubo Net . As a result if gaining all this useful information and knowledge I'm a lot happier in myself and dealing with things a lot better. It's just tge stress induced breathlessness I need to get under control. It was so bad on Tuesday that I could hardly complete a small slow amount of cardio rehab exercise without resting. My teacher commented I was in a far better place 10 days earlier when he'd seen me before my return to my part time work. . I haven't been sleeping well for around 3 years having 2/3 hours awake time from round 3am. I am hoping things will improve as I gain even more knowledge and see my cardiologist.Thank you and I hope you are keeping well.

[fishonabike in reply to Quaddie]

i am sorry to hear that your return to work has made your breathing issue worse - but i feel that the additional demands this makes on you would explain the increase in your problem - i don't know how recent your episode was but it can take months for the inflammation of your heart muscle to resolve - also some types of damage which can be caused by Takotsubo do not show up on a routine echocardiogram

there is currently no specific guidance for rehab following takotsubo and some people find that the program they are expected to follow brings on more symptoms and leaves them feeling defeated - this is not helpful phsychologically and there is no evidence of whether or not it is physically helpful

I wonder if your rehab has included some breathing exercises you could try when you start to feel under pressure or breathless? are you also making sure that you are getting extra rest after work, not just sleep but downtime as well

[Quaddie in reply to fishonabike]

Thank you, I'll bear all that in mind .