Takutsobu heart event: Its a year since... - British Heart Fou...

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Takutsobu heart event

Siamesechris profile image
11 Replies

Its a year since Takutsobu hit me, after an emotional event, and I spent a week in hospital. For months I was totally exhausted, couldnt walk far, slept during the day for several hours...couldnt even read a book . I am still very easily tired, unable to walk far , and my brain doesnt work properly. Any little problem can cause panic. Today I updated 2 Building Society passbooks then panicked when I got home because I couldnt remember where I had sent 2 debits....and the harder I looked at the books , the bigger the panic ! I can be out enjoying the day then suddenly I feel all my energy drain away till I am limp and tearful and can barely make it back to the car. I really struggle to put one foot in front of the other! Everything drains out of my head and my body, I just want to go home to safety

Remembering anything important is almost impossible, I have paper reminders all over the house- and forget to look ! When I do look, I forget quickly. I am not half the 73 year old that I was and I am scared, really really scared....I am not me any more

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Siamesechris profile image
Siamesechris
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11 Replies

Hello :-)

You sound really low and I am so sorry to read how you are feeling

I had heart attacks and Bypasses not the condition you have but it has left me in so many ways feeling very similar to some of the things you are feeling like feeling upset , frightened , stressed , forgetful , not as much energy and not the person I once was

I am just 60 and feel so much older nowadays but I think these emotions and fears do not help

Also with your condition some factors can be stress and emotional upset that can bring on these events and make you feel worse so the more you feel this way I can imagine becomes a vicious circle

Maybe as I have been told by members that have been so kind and helpful instead of focusing what has changed , how I feel now to try and accept things and to find the new me and whatever that is embrace it and stop looking back but forward

I know it is not easy I am still trying to take that advice as to me it makes sense but take a day at a time and maybe even start a journal not listing the negative things but any little positives that have happened in the day no matter how small so when you are feeling low you can read them as sometimes when we feel so overpowered we can miss these small positives but they are a good thing to be reminded of :-)

I hope you can rest and relax this evening and be kind to yourself :-) x

Siamesechris profile image
Siamesechris in reply to

thankyou for your kind words

in reply to Siamesechris

:-) x

Milkfairy profile image
MilkfairyHeart Star

Hello,

I haven't experienced an episode of Takostubo syndrome but it was one of the conditions that I was thought to have until my correct diagnosis was confirmed.

I am really sorry you don't feel yourself. That's something I recognise too!

There is a very good Facebook group which you might find helpful.

facebook.com/groups/Takotsu...

Cardiomyopathy UK has some information and a helpline

cardiomyopathy.org/about-ca...

Also hopefully fishonabike will be along to share their lived experience of Takostubo syndrome with you soon.

Siamesechris profile image
Siamesechris in reply to Milkfairy

Fishon abike? giggles x

Silvertail profile image
Silvertail

With takotsubo cardiomyopathy the pumping motion of the ventricle usually resolves in a few days, however you can feel not yourself for quite a while. Also the medications can make you feel dizzy, and very weak until your body gets used to them. I've had four events, first two were caused by severe emotional stress when I had to get my daughter from a domestic violence situation. The second two had a physical cause - after falling on concrete and hitting and cutting my face. My first one happened when I was 72 and I have managed to get myself almost back to scratch each time, but still feel exhausted at times. I do have other comorbidities, idiopathic cardiomyopathy etc, though. I hope you start to feel better soon.

Siamesechris profile image
Siamesechris in reply to Silvertail

thankyou x

Siamesechris profile image
Siamesechris in reply to Silvertail

so do I..its a year next week and I still struggle for energy

fishonabike profile image
fishonabike

hello, like you I had an episode of Takotsubo - i can identify with the fatigue and slow recovery

Takotsubo is an uncommon condition which was only recently recognised, so it is still not fully understood - but it has sometimes been linked with Transient Global Amnesia - if this is the case for you it could explain your memory issues

I am a member of the Facebook Takotsubo Support Group mentioned by Milkfairy and suggest that you join for the support and information you will find there. We have at least one other member who had memory problems after her episode i recall this being very distressing for her - she has resumed many of her previous activities and is not less present in the group.

Many of us experience a variety of after-effects, but unfortunatley, our doctors have little information about what to expect as the data is still being gathered, meanwhile our experience is "anecdotal evidence" although real and life changing for us.

Maybe your local health service offers a Memory Clinic? Your GP should be able to refer you for assessment.

Lizzy-loo profile image
Lizzy-loo

Hello there :)

I'm so sorry that you're feeling the way you do, and for everything you've been through.

While I've not experienced a Takutsobu event, I have been through one of the things known to cause them - the death of a spouse :(

You didn't mention what emotional event you'd been through that lead to the Takutsobu event but I just wanted to reassure you (if that's the right word!) that all the things you're going through and feeling can also be down to grief and grieving. Grief brain is a very real thing, I've experienced all the things you're going through and I know how scary it can be to suddenly be a version of yourself that you don't recognise and doesn't feel anywhere near as competent as the you you used to be.

The only thing that has helped me is time. It's almost 3 years now since my husband died and while my memory isn't quite back to its former glory, it is massively better than it was in the first 18-24 months post loss. In the meantime, be as kind as you can be to yourself and try and forgive yourself for any of the things that you forget or miss xx

Siamesechris profile image
Siamesechris in reply to Lizzy-loo

thankyou for your kind words.

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