Takotsubo Cardiomyopathy

[Lucksy17]

hi, this is my first post. I’ve just been discharged from hospital and diagnosed with Takotsubo Cardiomyopathy. I’ve been under immense work related stress the past 1.5yr. Consultant has stopped my HRY and Duloxetine 60mg cold turkey. He had introduced two new drugs called bisoprolol 2.5mg an ramipril 2.5mg. I honestly feel like crap. Dizzy, confused, chills, brain zaps, dry cough. My chest still feels tight! I’m judt struggling to process everything. Please reassure me this gets better. Thanks for reading

[Weetabixie]

Hi, sorry to hear what your going through. The only thing rings a bell with me is the antidepressant Duloxetine, I couldn't tolerate them, but sudden withdrawal certainly from venlefaxine etc causes those shocks/zaps. Dizziness I found I was getting little bits of dizziness from Bisoprolol I contact my gp and she halved my dosage and that helped a lot with that. I think she called it "syncope" at the time. Regardless I would contact your gp tomorrow regarding the sudden cold turkey on your medication depending on how long you've been taking them they should be tapered off not suddenly stopped, however that is just from my personal experience and what I have told at the time. I'm pretty sure the leaflets will say this also. Hrt I can't comment on as I am not allowed it with various other health conditions but I should think there could be side effects from that stopping also but with certain heart conditions it isn't allowed I think.This is a really helpful forum and hopefully someone else with better knowledge of your condition will post to you.

[Lucksy17 in reply to Weetabixie]

Thanks for your reply. Just a lot to take in and process

[BeKind28-]

Hello

Things will get better

Changing medications can always make you feel worse before they make you feel better and take a while to adjust

You really need to try and rest and look after yourself and at some stage look at your work situation as you have said you have found it stressful so maybe there is a way you can lessen the stress hopefully as that will help with your Diagnosis

I will put you a link that will take you to the BHF page that tells you some information about your condition and hopefully might help

Let us know how you get on x

bhf.org.uk/informationsuppo...

[Lucksy17 in reply to BeKind28-]

Thank you very much

[BeKind28- in reply to Lucksy17]

Just give yourself time and be kind to yourself you are going to be ok x

[Weetabixie]

Ps, things will get better, give yourself time if you can to let everything sink in. It's a real shock right now for you.

[Lucksy17]

I would have to agree with you. Never did I think this would have happened to me! Im trying to take the positives out of the situation that someone was trying to tell me about my work

[Milkfairy Heart Star]

Hello,

Welcome to the forum.

I hope that fishonabike will see your post, she has a lived experience of Takostubo syndrome.

Takostubo syndrome is a rare heart condition and there is sadly little research to say how patients should be treated following a TTS event.

There is a fantastic Facebook group which you may wish to join.

facebook.com/groups/Takotsu...

Also this website has some information that may help.

takotsubo.net/home/useful-l...

I live with another rare heart condition which is only just being recognised and treatment options being investigated.

I was suspected of having Takostubo syndrome until my vasospastic angina was diagnosed.

I acknowledge your frustrations and bewilderment.

I have been prescribed medication or experienced sudden withdrawal of treatments which have made my coronary vasospasms much worse.

Simply because the Cardiologist didn't understand vasospastic angina.

It is disappointing that the Cardiologist has withdrawn your HRT and Duloxetine so abruptly.

It might be worth asking your Cardiologist to contact a specialist who understands Takostubo syndrome more fully or you can ask to be referred to a specialist yourself for a second opinion about your ongoing treatment.

[ChrisdocCattrall]

Hello Lucksy17, I agree with Bekind28 and others who have posted, suggesting you rest, and take time for this shock to sink in. I experienced the same type of heart attack out of the blue two years ago at age 73. I am a six time world record holder competitive swimmer and I still compete in Masters. The shock for me was the most difficult to come to terms with. It took several months. I am sure if you follow your doctors’ advice you will be just fine. You just dodged a bullet so to speak, so try to be thankful. BTW, I am competing again and feel wonderful. Good luck to you 😀

[Lucksy17 in reply to ChrisdocCattrall]

Ack good luck in your next competition 🐽

[roughquest]

Change your job before it finishes you off!

Rampril does make you feel lethargic in the beginning, you could also ask if you could change cor Candesartan or similar if the feeling battered persists.

[Lucksy17 in reply to roughquest]

Hi, think I have worked my last day in my job., sad after 25 years working there but my health is way more important

[Silvertail]

Yes it does get better, but you might feel not right for a while. The medication can affect you until you get used to it. eg dizziness, fatigue etc. My cardiologist tells his patients to try to push through it because the benefits are worth it. I take my bisoprolol at night so it affects me less, however my body is used to it by now.

You should rest a lot in the early days.

[Lucksy17 in reply to Silvertail]

Hi thanks for your reply. I do take it at night time. Hopefully things will settle soon

[AmandaLouise77]

My cardiologist told me to take the Bisoprolol in the evening to lessen the side effects. It's really improved my energy levels doing that.

[Lucksy17]

hi Amanda, thanks for your reply. I take mine in the evening. Hopefully the side effects settle soon

[fishonabike]

Hello Lucksy, I believe i have recently seen you post about your recent diagnosis in another group connected to Takotsubo

yes it does get better, in fact most people recover well - but it can be slow and take much longr than the doctors predict

at the moment there is no clear evidence about the effect of Hormone Replacement Therapy on this condition - some doctors seem to think it imposes greater risks and some consider it beneficial - so in the end i feel we should be allowed to make our own decisions after gathering as much information as we can (but that is a personal opinion and not medical advice)

also there are some medications which are known to trigger Takotsubo episodes, there is some information abouth this here: takotsubo.net/drugs-that-ma... - but there are usually alternatives which a doctor can prescribe

i saw my GP as soon as possible after discharge from hopsital, they can switch your medication to alternatives if these cause you unpleasant side effects - e.g. Ramipril (an ACE inhibitor) can cause a nasty dry cough, Bisoprolol (a beta-blocker) can leave you feeling fatigued, woozy and affect your breathing if you have an existing lung condition - switching the timing of your medication can also inluence any side effects without reducing their effect as long as you stick to a regular time slot

i hope you are resting and letting you heart recover

[Lucksy17 in reply to fishonabike]

Hi, I think trying to come to terms with what happened is difficult. I may look into alternative herbal remedies to HRT for the foreseeable future.

[fishonabike in reply to Lucksy17]

or try to see someone who has a more detailed undertanding of the effects of HRT on the whole body - sometimes the benefits for you outweigh the statistical risks - you are an individual not a statistic, but many doctors have to be guided by the stats!

[Milkfairy Heart Star in reply to Lucksy17]

fishonabike makes a good point.

There is unfortunately conflicting studies about the role of HRT in women's heart and general health and well being.

My Cardiologist referred me to a Menopause specialist to discuss HRT.

I made a shared decision with my Cardiologist and Gynaecologist about whether the benefits of taking HRT out weighed the risks of HRT.

[MikeThePike in reply to fishonabike]

That link you provided is an excellent website. I don't have this condition but many thanks for sharing that link.

[Danceawaytheblues]

Hi Lucksy17, sorry to hear about your recent diagnosis with Takosubo Cardiomopathy. I totally understand how you are feeling and just want to say, hang on in there as it does get better with time and medication. I had my first `attack` in 2002 which was mild and I just got on with things. I had another `attack` in 2020 which was a lot more intense. After 4 days I was discharge from hospital with a leaflet and some medication. (It was during C days.) I am now 78 (79 later this year), I keep telling everyone `I am going to be 80 next year) lol😄😄😄. I felt dreadful when I first came home, breathing was difficult, I had no appetite and just wanted to sleep. Fast forward and I am doing well. I enjoy walks, still do all my housework (including windows) and dance to 60`s music, love my exercise bike and enjoy every day. There is light at the end of the tunnel and I wish you better soon. Best wishes Marianne.

[Lucksy17 in reply to Danceawaytheblues]

Hi Marianne, I’m glad to hear you’re doing well. I will get there, I’m just impatient. Definitely need to re access my job, it has absolutely been the reason this happened. I have a fantastic husband, two an amazing daughters who mean more to me than a job.

[fishonabike in reply to Danceawaytheblues]

i am a member of another online group for people with Takotsubo - in almost 10 yrs you are the first person to mention being given a leaflet about Takotsubo!!!!!!! most people who join the group get nothing, no info and no useful advice

i hope your leaflet was helpful, do you know the source?

[Danceawaytheblues in reply to fishonabike]

Hi fishonabike, I have just looked at the information that I received on discharge from the hospital. The leaflets that I was given only mentioned AF and HF. As you sadly guessed nothing about Takotsubo. Apologies if I misled you, maybe someone needs to write a leaflet for those who have experienced Takotsubo. Best wishes Marianne.

[fishonabike in reply to Danceawaytheblues]

unfortunately Takotsubo is not a common condition so leaflets are few and far between!!! there is good informaion available but we have to find it ourselves and the usual starting point is online - doctors tell us not to use google, but they often use it themselves for this condition as most of them have never heard of it!

for future reference Takotsubo.net has reliable info and the wikipedia entry is pretty good - BHF and Cardiomyopathy UK also have info but hey tend to avoid mentioning that long-term consequences are a real possiblitity and that there is no agreed treatment protocol

[Snowdropg]

I am 53, was on HRT and taken off it over night which is just awful. At the moment with all the ongoing symptoms, I’m desperate to go back on it.

It looks as though I have had an MI and Takotsubo Cardiomyopathy after extreme stress over a prolonged period, divorce, selling my family home, doing 2 jobs etc, it all got too much and then bingo out of nowhere the chest and back pain was just crippling, but I have no blocked coronary arteries. After 10 days in hospital back in October and at Papworth Royal Hospital , I still am waiting for a firm diagnosis and am on about 10 meds a day which make me feel unbelievably fatigued.

I have just completed cardiac rehabilitation though, and moving on to stage 4 which has been my life saver. Have you been offered any rehabilitation? It is fantastic for your confidence and getting you back on track .

It’s tough, try to stay positive.

[Lucksy17 in reply to Snowdropg]

Hi I’m sorry to hear this for you. No I haven’t been offered rehabilitation, may I ask how I go about that?

[Snowdropg in reply to Lucksy17]

I think I automatically was offered it as I’m also being treated for an MI , although my 2nd echocardiogram is now normal, which suggests Takotsubo. The cardiac team at the hospital referred me and it’s fantastic to restore your confidence, with professionals present .

[fishonabike in reply to Lucksy17]

Rehab is not automatically offered after Takotsubo in the UK - there is currently no research based evidence that it is effective (🤦‍♀️) so we often have to fight for it - but if you are offered some try to make sure that it is tailored to your needs as it is often designed for post- heart attack/MI and the recovery process is different after Takotsubo

[Qualipop in reply to Lucksy17]

It c an take 3 to 4 weeks b efore you are contacted about rehab but if you hear nothing phone cardiology and ask. It's a gym based excise class supervised by cardiac nurses.

[fishonabike in reply to Snowdropg]

sorry too hear this - have you heard about the online Facebook group for people with Takotsubo? Takotsubo Support Group - and as Milkfairy suggests, ask to be referred to an HRT specialist

[Lucksy17 in reply to fishonabike]

Hi, yeah I have just recently joined a fb group

[Snowdropg in reply to fishonabike]

I hadn’t heard about the support group, thank you so much I will join it. It can be very lonely and isolating dealing with these conditions as little is known about them . Thank you ❤️

[fishonabike in reply to Snowdropg]

see you there!

[Lucksy17 in reply to Snowdropg]

I totally relate to feeling isolated and lonely, it’s a scary time. I’m really thankful to read everyone’s story. Onwards and w

[Snowdropg in reply to Lucksy17]

I know the cardiac team at Peterborough hospital had Takotsubo referrals , so I would push for that. I’m Gillian btw, it does get easier, initially I could barely walk around the block without awful chest pain. Now I’m feeling v fit ! Ditched alcohol too

[Lucksy17 in reply to Snowdropg]

I always loved a glass or three of wine but haven’t touched a drop in a two weeks. To be honest the thought of it makes me feel ill, long may it continue

[enitsirhc]

Bisoporal takes a while to adjust to. Try taking it at night. I find that I felt less tired although I take it morning and evening now!

[Qualipop]

That sounds to me like the Ramipril cough; it's well known. If it's unbearable talk to your doctor. Bisopralol dropped my BP and heart rate so low I couldn't function and had to have it changed. You need to give them a few weeks to see if side effects wear off but then talk to your doctor.

[Lucksy17]

yeah the cough had just appeared. It’s not keeping me awake it’s just annoying

[Simcoxh]

Hi there sorry to here you feel rubbish ..I have AF and sometimes the side effects of the medication is actually worse than the cause ..perhaps see if the consultant can have a look again at your medication ..I have had to change mine over the years,because of the different side effects ...

[Octopus29]

Hi. I also had Takutsubo in 2022 and am still recovering. Some people recover really quickly. I found bisoprolol and ramipril hard at first, but my body got used to them after a week or so. The key thing is to rest, rest and then rest some more. Your heart needs time to recover from its trauma. I can see that someone has signposted you to the Facebook group and Takutsubo.net. The Facebook group has some wonderful people who will share their similar experiences and answer your questions. Good wishes for your recovery.

[Lucksy17 in reply to Octopus29]

Thank you for your reply.,

[Ceorl]

Hello Lucksy,

I'm sorry to read about your condition, I hope the advice you're receiving on here is helping and that things improve soon. Can you describe how the 'brain zaps' feel for you please? I have been experiencing something I had no term for until I read that and it seems like it may fit! Thanks in advance.

[Lucksy17 in reply to Ceorl]

It feels like a shock in my brain! A quick,jolt that feels weird. Although it happens very quickly

[Ennasti]

Why did they stop the HRT? Your hormonal response to the sudden cessation, and the fact you’re not getting a hormone top-up would cause a reaction let alone anything else they’ve done. Not unless you’ve been on it for some years and it was time to come off? Still, I thought it should be gradually reduced, not cold turkey. I’m on HRT and have no problems with it and being on a beta blocker or ace inhibitor so surely it’s not because of the change of cardiac drugs?

[Supermum1234]

I found a brilliant site called takotsubo.net they have an associated fb page which is sensibly run . It is aimed for patients and medics . I have found it very supportive and informative as I left hosp with no info on what is normal recovery or what I should be doing . My event was nov 23