Takotsubo Cardiomyopathy: At first... - British Heart Fou...

British Heart Foundation

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Takotsubo Cardiomyopathy

CraftyGirl72
CraftyGirl72

At first appointment with my Cardiologist at end of April it was suggested my recent Heart Failure was caused by stress. I am not surprised as I had previously been diagnosed with acute stress, anxiety etc when I have had tingling fingers/arm and chest pain. I have run on pure adrenaline for decades... caring for those around me to detriment of my own health.

During my recent pre op assessment for the requested Angiogram (they want to double check to make sure) and planned second Echo the nurse actually used the words "takotsubo cardiomyopathy". Not shocked as I did have major heartbreak at end of 2017 and symptoms got increasingly worse till picked up at a previous pre op assessment in February (op now postponed indefinitely).

I have been told to relax, chill, try to rest my mind and body but not happening... my mum passed away at beginning of May adding to my stress levels.

I am being kept in after Angio on 25th as no one to check on me and to make sure I have the test, I don't really want it done as I no longer care about the outcome.

I am off all medications as all the side effects from 3 different meds made me so ill, something I am not while un-medicated.

Does anyone have any experience with takotsubo cardiomyopathy?

Everything I read suggests a short recovery period after an acute attack but I am still experiencing the tingling, palpitations, chest pain and breathlessness on a regular basis.

My heart is still breaking over losing my love, my health and then my mum so can't see it recovering ever.

15 Replies

Hi CraftyGirl. I remember reading about this condition in Heart Matters magazine, but that is about as far as my knowledge goes. Presume you've seen the article, but here's the link anyway - bhf.org.uk/heart-matters-ma... (There's a link to more general info at the bottom of that article too.)

Are you receiving any counselling or other help for the way you are feeling? If not, I would make arranging that a priority. I felt similarly hopeless following my heart failure diagnosis. For me, it was the shock of losing my health, the stress of having a premature baby in a different hospital to me and being utterly miserable to find out I couldn't have any more children. I struggled for a couple of years and often felt there was no point in trying to get better (physically or mentally) as I would never be happy again anyway. Speaking to a psychologist (slowly but surely) really helped, as did giving myself lots of time to think things through and learning to talk to friends and family about how I was feeling. Six years on and I am really genuinely happy. Nobody's circumstances are comparable, of course, and I know it's hard to look outside your own thoughts and sadness when you feel so low, but I hope my experience might offer you a glimmer of motivation to keep trying. I would have sworn I KNEW there was no hope for me, but I couldn't feel any more different than I do now.

Please do find somebody to talk to about the way you are feeling. I'm sure the BHF Helpline would be able to recommend a good course of action for you if you called them - 0330 330 3311, during office hours.

Thinking of you x

I have been in counselling since the break up in December, it hasn't helped at all. More things just keep piling up. I told my counsellor last Tuesday I wasn't coming back as it hadn't helped at all. His response was to book me in for 11am today... not going, I am wasting his time, and my money, money I don't have. He did give some sessions for free but think that was out of pity knowing he couldn't help but fear of letting me go.

Mental health had organised a referral in September it starts next week... 9 months too late...

After a breakdown two weeks back different counselling was offered but they stuffed up apt and I missed it last week after initial assessment.

My heart being broken on top of accumulated stress was the final straw. I can't even grieve for mum as I have nothing left in me to give.

I lost my family when they wouldn't help me with mum, my friends when they couldn't understand why I still love the man that broke me. I am on my own 24/7 with no one understanding me,

Heart Failure is way down my list of problems! I think I have read this already but thank you.

Glad you got your happiness back. x

laura_dropstitch
laura_dropstitchHeart Star in reply to CraftyGirl72

Please reconsider giving up on the counselling, or at least find a replacement that might help. I had the same doubts when I was speaking to a psychologist, it seemed pointless because it couldn't change the circumstances that were making me so unhappy, but things were slowly (painfully slowly) sorting themselves out in my mind, I think, I just couldn't feel it at the time. I hope your mental health referral helps in some way, even though it is so far after the fact. Stay in touch x

I wish I could just give you a hug and take some of that stress away.

I can feel it in your words.

You sound like a wonderful caring thoughtfull lady

And I can completely sympathise and understand how frustrating it all is for you.

Im at my wits end with things at the moment and only came out of councilling 6minths ago for something else only to now be hit with heart issues.

X

CraftyGirl72
CraftyGirl72 in reply to Rob6868

Thank you, a hug would help right now. That is was I miss most from my broken relationship... when things got too much a healing hug went a long way. Unfortunately he caused lots of my stress and ultimately I left breaking my own heart.

I get myself in stress mode because I can't say no to helping people... but absolutely no one helps when I need it, gave up asking in end.

Go speak to your doc, hopefully you will get offered more counselling when you explain your heart issues are affecting you.

Take care. x

Stress makes things worse. The stress hormones cause a rise in blood glucose to enable the fight or flight response. This then has to be tempered by a release of insulin. If you are insulin resistant your body releases higher than normal amounts of insulin, and this excess of insulin causes the accumulation of visceral fat, the disruption of blood lipids so you get high vldl cholesterol, low HDL etc. The excess in insulin also increases blood volume, as does an excess of carbohydrate; 1g carbohydrate retains 4g water. Then insulin has a sibling hormone, insulin-like growth factor (IGF-1) that causes growth of the endothelial lining of arteries. Higher blood volume in effectively narrowed arteries means the danger of raised blood pressure.

So these things all work together to jeopardise health, as of course does smoking that thickens the blood and inhibits repair, but if you get your insulin levels under control you can improve your body's capability of coping with stress. See my reply on this post healthunlocked.com/bhf/post...

We are not destined to be governed by our genes if we think outside the recent traditions of our culture.

All the best.

Milkfairy
MilkfairyHeart Star

Hi Crafty Girl,

I acknowledge your sense of hopelessness.

Managing stress as others have already said is so important.

The Heart Matters Magazine had an article on different stratergies that some people have found helpful to manage their stress and their emotional response of depression.

This can be counselling, exercise, support groups or Mindfulness meditation. Yoga can be helpful too. Just getting out and meeting others can help.

There are support groups for those who are bereaved.

Emotional pain hurts just as much as physical pain.

Takosubo cardiomyopathy is thought to be a type of Microvascular dysfunction which like most angina can be made worse by strong emotions as well as the cold.

I hope you find the best way to begin to resolve how you are feeling soon.

bhf.org.uk/heart-matters-ma...

Hi. You have been through so much in such a short period of time and are still in shock. As others have said talking is key in helping your recovery. I have put some links together that may help you to talk things through when you feel the need to speak to someone immediately.

The bereavement trust has a helpline open during the evening

bereavement-trust.org.uk

CRUSE also has a variety of services

cruse.org.uk

MIND also have a helpline as well as an urgent helpline

mind.org.uk/information-sup...

Your GP will be able to help if you don’t want to speak to them then Please please speak to someone such as on the links above.

Sending you love and hugs. Take care and try and take each day at a time.

Love and hugs

Zena x

Thanks but I've done all the talking and asking for help I can. GP several times at breaking point but got no where, have spoken to two counsellors and a few of these phone line places but nothing has helped.

The bereavement is least of my worries to be honest, so much other stuff to deal with I can't even go there.

I really just wanted to see if anyone else had got here with same diagnosis. x

So sad for you x. I was packing for holiday when my Takabuso happened, I have always been a stress head, into hospital with all the requirements of a heart attack until the angiogram and there it was on the screen an elongated left side of my heart trying desperately to push blood int heart. I'm on a cocktail of drugs, and still experiencing pain, I don't think anyone really understands it, do hope you get better soon, and stress, easier said than done. Xx

hi, i don't know how helpful it will be for you to know that you are not alone - lots of people diagnosed with takotsubo do not recover in the way medics predict - there is a facebook support group you can join (there is even a link to it on the BHF information page about Taokotsubo) - you might find it reassuring to share your concerns with others who have the same experience and hear how they are learning to deal with it

most medics and many cardiologists know little about the condition as it was not even in the text books when they trained - but more is emerging, if you know where to look and who to ask - i see Milkfairy referred to the links with Microvascular disease, but there are also other possibilities and complications, knowing more about them and Takotsubo might help you find the treatment you feel you need

In February 2016 I was going through a divorce, dating a man that was abusive emotionally, lost my home and had major health problems, I hen 2 weeks before I had my takotsubo cardiomyopathy I was in a car wreck t-boned on my side my head went through the window I had no complications from it but stress from everything else.. I ended up having to move in with my sister and became very ill with a fever of 105 . The last thing I remember was talking to my boyfriend and fighting with him on the phone .. I never woke up the next day . I had the takotsubo heart failure and had aspirated In my sleep which caused me to get pneumonia And became septic with congestive heart failure on top of it had two strokes I was life lighted to the U of U In salt lake city Utah. Where I was on life-support for three days. When I woke up I didn’t know what happened I was in ICU for three weeks where they couldn’t get my heart to function normally my left side was only working at 30% But the good news was the takotsubo Was Reversible with time but because of all the other stuff I had with it it took me six months to heal from all of it I know it’s been three years and my heart has started to act up again they say that with The heartbreaker heart failure it’s healable but they don’t know the long-term effects of it so now I’m being checked and treated to see if it’s coming back I’ve had a lot of stress and loss in my life again and I’m scared i’m not sure if these are the any of the answers that you want but I do know that relieving stress in your life can help add to take it serious But yes I can’t say you can recover from it I’ve done a lot of therapy and counseling that I think I need to go back and do some more to help with the stress I’m not sure what else I could say but if you have any questions That maybe I could answer or if you just need somebody to talk you’re welcome to message me

I have recently been diagnosed with this. Just wondering if you ever did get any help? I’m still early stages of recovery. I have a feeling it will take longer than the medics predict?

To be honest no.... I am fine though if that helps? I just had to wait it out. Drugs made me so ill when I wasn't before so we opted for diet/exercise and counselling. I run 5K, dance, cycle and do everything for myself after fighting to prove I didn't have residual High BP so did not need meds to fix it.

I have to admit I do get niggling chest pain from time to time in high stress times (First 3 months of Covid Lockdown were fun!) but once you learn to differentiate niggle from serious trouble you can control and prevent it getting worse.

Its more about admitting you are stressed, anxious and deal with that... than the TS.

I would say the 6 weeks that is claimed for healing is nonsense, it took months and months, diagnosed unexpectedly in Jan/Feb and was fine, unmedicated by October. You will be fine and find the old you, just take it easy and give it the time your body needs.

Take care and most of all stay strong, you'll know what's best for you and doctors are only a guide. Good luck. x

Thank you for your reply. I’m certain my problem started in first lockdown but wasn’t noticed!! Then I had full blown episode 2 weeks ago - I was stressed after that I do believe I had a full blown panic attack. I felt that it was dismissed as nothing and I would recover within 6-8 weeks.

Before this I walked my dog twice a day and did between 2-4 aquacise classes a week. So nice to know you have gone back to your fitness program.

I didn’t think I was a stressed person but I’m obviously am. I will look into counselling but for now need to heal. Thank you for taking the time to reply. I’m in the support group too which has frightened me but also answered questions. Take care and stay safe.

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