Takatsubo Cardiomyopathy

[Dottydotcat]

I have recently been diagnosed with Takatsubo Cardiomyopathy and would like to hear from others with their recovery experiences please?

[Milkfairy Heart Star]

Hi Dottydotcat

Welcome.

Takostubo Cardiomyopathy/ syndrome is an unrecognised condition so it's good to hear that yours has been diagnosed.

The BHF have this information. Prof Dana Dawson is a BHF funded researcher into the condition and keeps a register of patients.

Pethaps suggest your Cardiology team get in touch with her?

bhf.org.uk/informationsuppo...

Cardiomyopathy UK also has some information.

cardiomyopathy.org/takotsub...

I hope this helps. I live with another poorly understood and recognised heart condition that has parallels with Takostubo syndrome and I am at higher risk of experiencing Takostubo syndrome.

There are a few others on the forum who live with Takostubo syndrome and I am sure they will be along to share their experiences.

[Dottydotcat in reply to Milkfairy]

Thankyou milk Fairy

[Magwa64]

Hi Dottydotcat,

I had this condition 2 years ago, l take a beta blocker but lead a normal life. I count myself blessed to have recovered so well as l spent a week on life support. The staff at the Freeman hospital in Newcastle were amazing and I was told it was the first case they had seen in five years.

Best wishes for your full recovery.

[Dottydotcat in reply to Magwa64]

It's comforting to hear of your good recovery. My GP says I'm only the third case he's come across during his long career. I am on about 6 different medications but am hopefull that I will be able to come off all of them. Mine came after a number of stressful events culminating in the sudden death of my Mother. How did you manage your recovery? Any tips?

[Magwa64 in reply to Dottydotcat]

Sorry to hear about your mother sudden death, they are a big miss.

I had to retire from my job which l loved, it took me a while to come to terms with that but now realise it’s possibly the best thing to have happened . I love walking, l look after my granddaughter one day a week, she’s adorable. I’ve joined the WI , primarily for travel insurance l couldn’t otherwise have afforded having the medical condition. I love the WI, have met some great people and join in so many events.

I still have some palpitations and occasional dizzy spells but I try to stay positive, I am still here and every day is a bonus .

Good luck

[allotmentlover]

Hi Dottydotcat

I was diagnosed at the beginning of July with Reverse Takotsubo Cardiomyopathy. I am making a slow recovery. I'm on Eplerenone and Clopidogril at present as I was experiencing side effects from the statins and ACE inhibitors and Angiotensin Inhibitors. Doctors have talked about adding a beta blocker when I see them again next week. But otherwise I feel well. Milkfairy provided links for me to look at which have proved helpful. I hope all goes well for you. Regards Allotmentlover

[Dottydotcat]

It is good to hear that you are feeling well and recovering be it slowly. I have visited the web sites suggested by Milkfairy which were helpful. I was admitted at the beginning of July and thought to have had a heart attack but had to wait 2 weeks for Angiogram ( due to additional infection ) when the diagnosis was made. I am taking a statin, Ticagrelor, Lansoprozole, Ramapril, Bisaprolol and Aspirin. I have had some side effects due to low Blood Pressure and pulse causing me to feel light headed. I also have occasional bouts of gasping for breath when resting but these are getting less. The doctors plan an MRI scan in a few weeks though due demand for service will be a few months. Am feeling well though somewhat apprehensive not doing much but would like to do a lot more. I do wish you a full recovery Allotmentlover, keep safe. Kind Regards Dottydotcat

[allotmentlover]

I had an angiogram on admission which showed the diagnosis. I know what you mean about being apprehensive. I have an allotment and I went last Sunday for the first time since my discharge. I managed to harvest some produce and till the soil. I did everything slowly because if I exert myself I still have some breathlessness. I am starting to feel more confident about doing more, mainly housework and gardening in short spells. I was told while in hospital that it can take some months for the heart to recover and taking Ramipril or Candesartan, Eplerenone, Statin and a beta blocker will give my heart the best chance of recovering. Unfortunately, both Ramipril and Candesartan not only dropped my b/p down to 98/40, I developed a cough and wheeze, Atorvastin upset my IBS, so I only take Clopidogril and Eplerenone (I felt worse on the treatment than I did when I was admitted). I have an appointment for next week to see what to add in. I have my cardiac mri scan in two weeks time which will show if I have any residual damage. It's good to know there are others with this condition. I hope you continue to improve. Take Care Allotmentlover