Diagnosed possible Takotsubo

[Ladytako]

After discharge from CCU awaiting an MRI as an outpatient to confirm the diagnosis of Takotsubo , I feel so alone and concerned that they have given me an appointment for four months time with the cardiologist and the MRI wait time is long . I had to go to A+E a week after I was discharged as i had sharp pain when breathing deeply and breathless was released after CT show no PE.

I have slow heartbeat bradycardia and am now on Nebivolol beta blocker which has made me feel better during the day but the big dip in blood pressure and pulse when sleeping has caused pain and swelling in my right leg , feeling breathless and tight sensation in central chest.

GP support has been impossible can’t get appt get nurse practitioners or a phone appt and the doc hadn’t heard of Takotsubo and said she can’t say as not a cardiac doctor

In desperation I phoned the cardiac ambulatory clinic and a cardiac nurse was so kind and called me back with a docs advice to stop the beta blocker nebivolol and she will phone again in three days see how that affects me .

I feel nauseous ,heart flutters, weak and I have to return to work soon but think that they have not got my meds or diagnosis right yet

I am eating healthy though I have no appetite and have lost a stone in weight in three weeks I have been doing my cardiac rehab exercises at home and take walks

It’s just so hard to have a condition that is considered a stress related one like it’s all in my head and it’s only an overload of adrenaline , almost like they lost interest and discharged me with no advice or support as soon as the angiogram showed no blocked arteries and my previous stents were good

Echo show heart function at 40%

[Happyrosie]

I’m so sorry you are feeling like this. Breathing exercises might help?

[Milkfairy Heart Star]

Hello, I am sorry you are feeling so abandoned by the system at the moment.

When I was admitted to hospital in 2012 with a suspected heart attack, I was incorrectly told I couldn't have a heart attack or angina. It was also thought I might have had a Takostubo syndrome event.

I wasn't allowed home until I had an MRI scan.

I was prescribed beta blockers being told I was anxious, I didn't have angina. My symptoms got alot worse.

I was admitted to hospital with unstable angina. I later learned that beta blockers should be used with caution if you have vasospastic angina as they can make coronary vasospasms worse.

Following a specialised angiogram, I was diagnosed with vasospastic angina, a rare type of angina that often goes under diagnosed and remains poorly understood by many cardiac nurses and Cardiologists.

I felt bewildered and confused at first. There was very little information about vasospastic angina available at the time.

I sought out a Cardiologist who had the knowledge to care for me.

I connected with other people living with vasospastic angina through various online support groups.

The triggers for my coronary vasospasms are the cold, emotional, mental and physical stress.

I have to pace my activities and find ways to manage my stressors well.

I found Tai Chi, yoga and Mindfulness meditation helpful. I use breathing and relaxation techniques.

I walk my dog everyday.

Coming to terms with a life changing heart event can take time.

You can refer yourself to Talking Therapies through the NHS.

nhs.uk/mental-health/talkin...

This free app Insight Timer has lots of stratergies that may help you.

insighttimer.com/en-gb

Perhaps give the BHF helpline a call and speak with one of the cardiac nurses?

bhf.org.uk/informationsuppo...

Cardiomyopathy UK also has a helpline too.

cardiomyopathy.org/node/617

I acknowledge not knowing why you have had your cardiac event is challenging. I will never forget the feeling of relief when I was told the cause of my symptoms, I had thought I was going mad thinking it was all in my head.

Perhaps try taking one day at a time?

I hope you feel more at ease soon.

[Bluehope81]

Not medical advice and opinions only, Takotsubo is a real physical condition, its not in your head, the stress of whatever has happened (assuming from your post its stress) has changed the muscle fiber structures in your heart.

Generally speaking you should make a good recovery from Takotsubo , no one can tell you exactly how much you will regain, only your specialist will be able to assess your exact prognosis, based on the conditions that lead to the Takostubo and your current parameters.

As far as I can tell after being away from the country for 15 years and now coming back the NHS has infact completely collapsed except for the most important emergencies.

I no longer use or rely on the NHS for my medical needs, I know some wonderful hospitals in China, Hong Kong and Thailand, if anybody wishes to contact me they can.

[REDACTED]

CT's are inexpensive and will be carried out the same day, MRI's are carried out the next day, I also do all my dental work outside of the UK, same places I mentioned before have excellent dentists.

I can say that outside of the UK most people in other countries look down on the NHS it is expensive, and not fit for service, the idea that it is the envy of the world, well that faded along time ago probably in the 1990's.

You should look into meditation and other forms of relaxation and enrichment to help you on your path to recovery. Please continue to push for most up to date treatment you can get from the NHS.

[Ladytako in reply to Bluehope81]

Thank you for your reply . I will look into alternative therapies and relaxation . Not in the position to go abroad unfortunately though you are right there ! the NHS and especially GP services are not what it should be , even though the hospitals are trying their best they have been let down as much as us .

I will keep asking for help the cardiac nurse I spoke to is trying to get my meds adjusted to help so hopefully they will support my heart while it recovers

I really feel that I have a problem with my microvascular system as I was getting breathless a while before my attack but until I get the MRI then maybe they can help me properly

Being treated as though I’ve had a heart attack isnt beneficial especially if like myself you have slow heart rate and beta blockers slow it further

if it is Takotsubo , research in Wales is showing it to possibly be some kind of inflammation and could in future be treated as such in the individual way needed 🙏

[Milkfairy Heart Star in reply to Bluehope81]

Do you have a lived experience of living with or suspected of having a Takostubo event ?

The knowledge about Takostubo cardiomyopathy has moved on.

I hope fishonabike will be along to share her expertise and lived experience of Takostubo Cardiomyopathy