Takotsubo Cardiomyopathy

[Quaddie]

had a small heart attack while on holiday in Turkey on 26/09/23. Hospitalised for 6 days on drip as had low sodium/potassium levels. Had an angiogram, No stents required, found muscular bridge and mitral valve regurgitation, given medication.Upon return to UK Hospitalised after a week with chest pain admitted through A&E fir 10 days had scans x-ray and MRI heart scan st St Thomas sent hime with "likely diagnosis of Takosubo Cardiomyopathy. Waiting fir outpatients follow up. Another visit to A& E ladt week more chest pain. No guidance given on discharge had to investigate myself via Google, BHA website. Does anyone else have this condition? Thank you

[Scotland45]

I was told about this condition today, so have just started to read about it.

[fishonabike in reply to Scotland45]

you might be interested in my comments below - you say you have been told about the condition, but if you were diagnosed yesterday i hope you are being encouraged to rest

[Scotland45 in reply to fishonabike]

Thank you for replying, it was not diagnosed, it was suggested, I lost my husband very suddenly in May, I was having chest pains before this however. The cardiac nurse mentioned it, they are going to do a stress test and I am awaiting the appointment.

[fishonabike]

Hello Quaddie, i had a Takotsubo episode 9 years ago, this is not a common condition so most cardiologists have little experience of it

There is a helpful website Takotsubo.net, with good info about the condition and a helpful FAQ. I am also a member of a Facebook Takotsubo Support Group, with members from all over the world, where people can share their experience and get support, unlike some fb groups it is very supportive and well moderated.

Also another british heart charity devoted to cardiomyopathy in the uk ( i daren't name it in case this post is removed) has regular online live support groups, the next one is on monday 27th Nov, you might find it useful

i hope that you were told to rest after your episode, your heart has experienced a trauma and this will have caused inflammation which reduces the effectiveness of your heart muscle until it recovers - this takes time and can leave you feeling exhausted and short of breath at at times - recovery can take longer than the doctors predict

[Milkfairy Heart Star in reply to fishonabike]

I have posted the link to the information on Cardiomyopathy UK's website about Takostubo syndrome/ Cardiomyopathy without problems in the past.

Quaddie here's the link

cardiomyopathy.org/about-ca...

[Quaddie in reply to Milkfairy]

Thank you

[Quaddie in reply to fishonabike]

Thank you for this information I wasn't given any info at all on my discharge from hospital 3 weeks ago

[fishonabike in reply to Quaddie]

that's fairly usual i gather - has not changed much since my episode 9 yrs ago when the nursing staff hadn't heard of it and there was no info at all in hospital

[Danceawaytheblues]

Hi Quaddie, I have had two episodes of Takostubo, one in 2002 and one in 2020. I am now 78 and enjoying every day as it come`s. The first few months after my episodes were a little daunting for me, but I saw a gradual improvement daily. Gentle exercise and lots of TLC in the beginning. Hitting the shops today for some Christmas shopping , remember it`s not all bad news. Take care and best wishes to you. Marianne. x

[Quaddie in reply to Danceawaytheblues]

Thank you thats reassuring, did you get after pain, eg twinges slight pain in heart area that's what worries me?

[fishonabike in reply to Quaddie]

some people do have twinges or periods of chest pain afterwards - the advice is always to seek medicak advice if these persist for 10 minutes or more, get worse and/or accompany shortness of breath

it is now recognised that some people with Takotsubo also have underlying microvascular issues - so if the occasional pains continue keep a note of their frequency, what you are doing when they start, what helps, wht brings them on etc and tell your cardiolgist/GP at your next visit

most people recover well, but rest and a gradual return to physical activity seem to be helpful

this condition was only recognised fairly recently, so there is not yet widely accepted specific treatment or recomendations for cardiac rehab - that's why the support of others with experience of the condition can be so helpful

if you are London based you might be ablt to request referral to the Royal Brompton where there is at least one senior cardiology consultant with recognsied expertise in Takotsubo and related issues

[Quaddie in reply to fishonabike]

Thank you that's useful to know.

[Silvertail]

Yes, I've had four episodes.

[Silvasava]

I have a different type of Cardiomyopathy but had occasion to ring Cardiomyopathy UK yesterday. The nurse I spoke to was very knowledgeable and supportive so can thoroughly recommend.

[Heartfairy]

Hello, I’m sorry to read your story but hopefully you will get to the bottom of what’s going. I had a heart attack last year similar to you as in I didn’t need stenting as the branch of the artery was too small to stent. However, last week I went to A&E with chest pains. I saw a cardiologist last week and he is treating me for Microvascular angina. He said it was difficult to diagnose as the tiny arteries can’t be seen with an angiogram but it was more common in women who had gone through the menopause and basically sent me away with a packet of Ranolazine to try, with no follow up or anything. So what I’m trying to say is when you are seen, perhaps ask about this and go armed with questions and ask for any possible tests to be done. I’m seeing my GP tomorrow so I can ask if I can be referred again to cardiologist and ask if I can be tested again to establish what exactly is going on with my heart although I must admit, I am feeling better since taking the new meds! So perhaps I do have MVA although I haven’t been properly tested for it. Good luck and keep us posted. ❤️🧚🏼‍♀️

[Quaddie in reply to Heartfairy]

Hi any follow up information after seeing your doctor?

[Heartfairy in reply to Quaddie]

Hello Quaddie

Wow - you’ve got a great memory in remembering my story. Well what a time I’ve had since my message to you. Unfortunately I had the sensations and feelings in my chest whilst on the MVA meds so my GP read out the letter from the cardiologist saying he’d discharged me as he thought the symptoms described were gastric and not cardiac so I was told to stop taking the Ranozaline. At the same time we agreed I should stop the codeine I was on due to a slipped disc which was being treated with codeine and Gabapentin. In addition he told me to stop the Clopidogrel (blood thinner) as I’d been on it for a year following the HA and it was now time to stop. Well, the last week has been horrendous, proper cold turkey feelings - agitation, hot sweats, no appetite but can’t stop going to the loo. Spoke to a different GP on Tuesday who said this was “typical” when stopping codeine without weaning! So I’m kind of back to square one. Are the sensations from my tummy or is it anxiety? All I know is now that I’m off three meds, I need to try and turn a corner and move on. Stop being scared of poor health and of dying - this is how extreme everything gets. Just get my back better and aim to get through Christmas and have a happier start to the new year! I’m diarising the sensations to see if there’s any pattern as in what I’ve eaten, have I exerted too quickly, are they at rest and then I’m armed with information.

I hope you’re feeling ok. Have you had anymore episodes or heard anything back from the hospital regarding an appointment. It’s a lot to take in isn’t it when our health situation just changes in a blink. And I think once we get a proper diagnosis we have to trust the treatment but it’s all the unknown and the stuff inbetween. I hope you’re a lot more positive than I am as I’ve really struggled with this whole episode but I wish you well and thank you again for getting in touch. You’ve actually made me smile as it’s nice to know you’re in someone’s thoughts. Lots of love and let me know how you get on ❤️🧚🏼‍♀️

[Quaddie in reply to Heartfairy]

Glad my message cheered you up. I'm in limbo waiting for my outpatients apt with original cardiologist. In the meantime I went to cardio rehab yesterday at a local surgery and was told by Nurse she was at a loss what to do with me as I wasn't a typical heart attack case being a likely Takosubo Cardiomyopathy case. , so frustrating....

Do hope you get your medication or otherwise sorted the NHS is not what it once was which is where the problem lies unfortunately

Take care 😊

[Ladytako]

Did it all get better for you by now I see this was six months ago ?

My situation is like you were back then , hoping alls well with you now . It seems such a scary , lonely , slow journey to get the diagnosis right and the meds