I have lived with arrhythmia (which comes and goes) since 2011 and have managed this condition with medication. In May 2020 quietly sitting i felt very poorly, BP was very high - went to A&E but nothing found. My arrhythmia attacks were far more frequent and again Last Sunday 8th November felt ill and my BP was through the roof. Went to A&E and after an angiogram was diagnosed with takotsubo syndrome. I understand this is quite rare and wanted to know how others have coped with this condition. I have not had a really bad trauma/stress In my life apart from lockdown and my dog being poorly in May. At the moment I am very frightened and extremely low in mood so would appreciate hearing from anyone that has this and how they have coped. I was told I will have a echocardiogram in 6-8 weeks to see if there is any improvement.Read less
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Craftydoll
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Hello. I don’t have your condition but saw your post and that you haven’t had any replies so thought I’d send a reply and say Hi, sorry to hear of how you’re feeling.
Have you discovered the Cardiomyopathy UK website? They have lots of information about your condition. Here’s the link.
I’m sure there are people on here who have experience in this field so I expect they’ll be along soon. In the meantime, the “related posts” heading at the side of the page might help.
Thank you, very kind of you to reply, I will look at these sites. I’ve joined a Facebook support group and have already been told rest, listen to your body, which I may not have done but will now. Bless you and thanks again 💕
I’ve (hopefully) added the link to the November events for Cardiomyopathy UK. The groups are all happening via zoom. There is not one specific to Takatsubo but there are some local social groups happening this month so one might be local to you. The charity might be able to put you in touch with someone with the same condition via peer support.
Hi I too had Takuotsubo when my son died suddenly last July . I had been having lots of different heart rhythms over some time which had got worse this year . Would have seen GP if had been easier !
I know we are all different but since it was identified as small vessel angina (had had chest pains on quite a few occasions prior to that episode ) I am doing much better .
Taking Diltiazem modified release 60mg I take 2 . Which is a small dose I believe.
Had no further ‘funny’ rhythms or chest pain.
I had been admitted with chest pain prior to that on 4 occasions but was fobbed off , in my opinion, calling it muscular 🤫 not so .
Hope you can get some help. I believe the calcium channel blockers seem to be of help in this condition.
I new here , hope I haven’t stepped on anyone’s feet , but they seem so very helpful here .
I am so very very sorry to hear about your sad news. Grief is the price of love and it’s still very recent, although my head won’t even let me go there to how I would feel. Hugs and prayers for your healing.
Thank you for your reply. I know it is still very early days for me but I suspect I had my first episode in May this year but was fobbed off by the hospital. I have intermittent AF for a number of years and the episodes were more frequent. I thought right I’m going to lose weight and get fitter and I did, in September when gyms opened I joined one and did aquacise 2-4 times a week as well as walking my dog. I felt much better, lost weight and had more flexibility but still had more AF episodes and then last Sunday I had the chest pains and very high BP which ended up with a visit to A&E and being told after an angiogram that I had tacotsubo syndrome . I felt lost, still do but I’ve listened to what people say - I joined the Facebook support group and they have given me hope and lots of information Mostly rest rest rest - listen to your body. So thank you very much. 💕😘
Hello, I have just found your post and wondered how you’re getting along? I had my TTS 4 weeks ago at the end of November 2020. It’s very early days still and very frightening as there’s very little information out there apart from a genetic overview. Which Facebook group have you joined? I hoe you’re feeling better on your meds and with rest you are feeling stronger. Xx
Hello henryBateman thank you for your reply - you are only the second on this site that I know that has had this condition. First, the takotsubo support group on Facebook is wonderful and it’s a group that is worldwide, so there is always someone to talk to and answer any questions. There is also a link to lots of information about takotsubo and everyone is so friendly and helpful. I was so frightened at the beginning and I really don’t know what I would have done without their support so please try and reach them and I can assure you they will help. I am now 7 weeks out of my tacotsubo event and first few weeks I rested a lot. Some days up until 4-5 weeks my intention was to get out of bed and face the day only to go back a couple of hours later but now I’m feeling much better. I’ve had one echocardiogram but no results as yet. My first appointment is on 15 January with a cardiologist but I’m wondering with COVID whether this will happen. I’m on BP pills, blood thinners, a beta blocker and a statin. Not sure if I’m going to be staying in this medication as there were no blockages in my arteries and cholesterol was fine.
Apart from the stress of life I didn’t really have a trigger.
If you have trouble findin the Facebook group let me know but I searched takotsubo and it came up - a picture of a red heart on a blue body. Tell them you are new, that you are frightened and would like a better understanding of it all I guarantee you will get help.
I pray that you feel well soon, I was rock bottom and very scared - well terrified and so emotional but with rest and medication I’m so much better - I’m not completely well but going in the right direction- good luck it will get better. X
Hi there. Thank you for your reply. I think I’m on the Facebook page you mention. It is useful and reassuring to know there are other people with TTS. I’m surprised there are not more people on this site who have had a Takotsubo event. Each person appears to have a very individual recovery path which makes it difficult to put generalisation on recovery. I live hear York in the UK and York hospital was amazing at my acute stage. They said I would return at the end of January for a follow up so will have to see what happens then. I hope the current covid situation doesn’t have too much of an impact on appointments. You are a few weeks ahead of of me. Do you work and will you return if you do? I worked full time so am just wondering how I’ll manage that again! Take care, thank you again for your reply. Xx
Hello again, so glad you found the Facebook group. As you say there are very few people on this health unlock site that have had tacotsubo but I believe these numbers are increasing.
What I was reminded about on the Facebook group is that the people that have completely recovered do not tend to stay - they stay for a few months then after recovery move on. Fortunately there still are a few to tell us about their recovery. At our stage we still need reassurance and tend to look every day, well I do anyway!I live in the uk on the south coast and have now retired but I do look after my young grandchildren a couple of times a week (still do even with covid as my daughter is a school teacher). I’ve had Christmas off but had them from 4 weeks after my episode but to be honest my husband has been the one that’s done the majority of the work. Before my episode I also did aquacise 2-3 times a week but have been advised by a cardio nurse not to do this for the time being.
I really do hope you are one of the lucky ones that recover quickly. I know when I’ve done too much because I get a buzz in my jaw and a fleeting chest pain so I stop and rest - rest seems to be the key. Some people have had 3 months off work. Not sure if this would be possible for you. Please take care don’t go back to work too soon and make sure you rest when you need to.
Morning Craftydoll. Thank you for your reply. I am definitely getting stronger very slowly but struggle to see me working full time with a 2 hour round commute as a leader in a primary school rather like your daughter. The pressure is intense anyway and now with covid it’s even more so. I’m on a range of meds including Bisoprolol which I’ve been reading has some unpleasant side effects. My worry is the medics won’t believe me when I say I’m exhausted after pottering round the house for a bit and sign me fit for work. The Registrar in hospital was lovely but said I’d make a full recovery in no time! Hope you are coping well with the new virus variant in the south and keeping safe. 😀
Hello henrybatemanI wrote a war and peace reply then my phone ran out of batteries so lost the lot!!! 😡
Never mind what I was saying is you must not go back to work before your heart has mended. Rest is the key. As I know from my daughter teaching is hard work, long hours and with the added commute you just won’t cope - I think it is too soon even if you have a straight forward recovery. A lot of doctors/consultants believe takotsubo is transient and recovery quick. So getting someone on your side might be a challenge. There is a doctor at the Royal Brompton Hospital in London called Dr Lyon, you could ask to be referred to him or if finances allow see him privately.
As far as medication is concerned I take a beta blocker called carvedilol 3.125. At the moment I’m ok on this. I did take bisoprolol many years ago for my arrhythmia but I was very depressed while taking it. As soon as I stopped my mood lightened.
I do wish you well for 2021 please keep in touch. Stay safe and rest
Happy New Year. I hope you are enjoying a few quiet days. I’ve just been speaking to a work colleague and could feel my heart tightening! I can’t get out of bed early in a morning as my BP is low and I feel dizzy but don’t want to up my meds because my evening it’s higher anyway. I really don’t want any more meds anyway as I feel I’m on enough. I should have a hospital appointment at the end of January but with this increase in covid I don’t know what will happen. Is your daughter back in school on Monday or is her school closed? It’s a real worry bring in school at the moment, especially with very young children - I teach Reception- as they have no concept of social distance and families will have mixed over Christmas!
Happy new year to you too.I like you, (when talking to my son, who inadvertently stresses-me) felt my chest tightening and had to ask him to stop. So I can sympathise but it’s still early days. Going back to school with all the hype and extra pressure with covid is bound to stress you out so speak to your GP, you should be able to get a phone appointment at the very least.
Hello Henrybateman, how are you feeling - better I hope? I hope you managed to get an appointment with your GP and that you are resting at home. My reply last time was a a lot shorter than it should have been I’m sure I wrote a lot more but somehow half got lost somewhere 😂
I hope you are on the mend it’s all very frightening at first and I really felt so emotional. I’m still scared it might happen again but I’m hopeful to recover, I hope you are too.
Morning, it’s lovely sunny day here. Can’t believe the world and especially the UK is in such a sorry state! Thank you for both your messages. I’m so sorry, I didn’t realise I hadn’t replied to your last one. I must confess I’m a little worried about my memory. My long term memory is fine but I just don’t retain short term stuff, like replying to you. This is the second time it’s struck me. The previous one was when a colleague messaged me to say Happy NY. I had completely forgotten about her when I had been messaging people. I don’t trust myself with my meds so I have a system to make sure I take them but not twice! It’s becoming a bit of a concern. I think I need to make an appointment as you say with the GP. There’s no talk of me returning to work. My Heart Failure Nurse said on Monday it’s still early days so she wouldn’t be advising my return. I was also wondering about counselling. That may help me to get things straight in my head. It’s all very confusing. Sorry to natter on, you’ve just caught me in a thinking mood!Has your daughter returned to work? It’s a very unsettling time. Are you still looking after the grandchildren. That can be exhausting for you.
How are you feeling both physically and mentally at the moment? The FB group seem very active at the moment. Are you in their Coffee Lounge as well? I have also joined the Cardiomyopathy UK group. They’re having a virtual coffee afternoon on Friday which I’ve joined - if I remember to join!!
Enjoy the sun, if it’s with you today. Take care and keep safe, away from the nasty virus. Just message me if I don’t reply, it’s not on purpose! Xx
Hello again - first of all it’s raining here and very cold so enjoy the sun while you have it 😃Please don’t worry about not replying I thought my first message was short (I’m sure I wrote more but edited it) so I don’t believe you received it all and I was worried that I had offended you!!
As far as your memory goes my head was full of cotton wool for ages and I believe this is a symptom. So try not to worry. Lots of people mention this on Facebook site.
I take my meds twice a day. First lot as soon as I wake and the second I put an alarm on my phone, hopefully that could work for you.
Daughter went back Monday - now it’s on line teaching not ideal and she’s not happy but we still have her youngest twice a week.
Now the counselling was also mentioned to me because of the stress implications. It is an option but one that’s for the future maybe.
How do I feel? Mentally I’m frightened it will happen again! Physically I feel better but still have that buzz in my jaw which I’m concerned about. As I said I have arrhythmia and I was seeing the GP about this when my episode happened. So I do worry what will happen if I have another arrhythmia attack!! Terrifying! I have a cardiologist appointment 15 January so that will be something to ask.
I will join the cardiomyopathy group and I have joined the coffee lounge - I believe there is another linked to stress relief.
Please take care, your cardio nurse sounds informed I don’t think mine is!!
Stay safe from this horrid virus and take it a day at a time. Look after yourself.
Hello. How are today? Thought I’d send you a photo of the view from our lounge of the late afternoon sunshine. It’s such a lovely view and changes with the seasons. I’ve already written a long message then had to go to do a job and lost it all!! Ahhh.
I’ve had some heart/chest discomfort last night and today so feeling a bit fed up. If I’m really still it settles a bit. Hoping it will just go by itself. Good you’ve got an appointment. Do let me know how it goes and if you’re happy with it’s outcome. I’ve just received one for 16th February. My husband will be at work so my brother will take me I’ll see if he can come in as I’ll forget what I want to say and then their replies! My head is all over the place with my memory and trying to say the right words. I hope that too improves. I can’t work with my head like this!
How’s your daughter getting on? They say at my school, they’ve got over half the children in. It’s crazy!
Hello Helen Beautiful views you have from your lounge window. Thank you for sharing.
Sorry to hear you had some chest discomfort today. Funnily enough I haven’t had a wonderful day either, nothing I can put my finger on just strange headache and now I can’t sleep. I have a lot of muscle pain but I’m going to ask the cardiologist about the statins, as I was told my arteries were clear so I think I’m only on them as a temporary measure to support my heart while it heals but I think the side effects are not good.
You are a few weeks behind me, I believe your TTS was end of November wasn’t it, so still early days with the head still full of cotton wool!! I’m going to take a list of questions to ask when I go to see cardiologist and write down the answers (if I get any)! That’s if it goes ahead I feel it might be a phone appointment as covid is not good here. I do hope I either have a echocardiogram or MRI I want to know if there is any damage.
I think I feel off today because our friend and best man has covid and is in hospital. We have been told he has had 2 mini strokes because of it. He has the same problem as me afib and covid has done this to him. I feel so sad.
My daughter is live teaching on line and is finding it quite exhausting. But at least she is working and safe so must be thankful. One of her boys is at nursery full time he is 4 .5 so we don’t have him - we look after the 1 year old. He’s at nursery 2 days and we look after him 2 days (unfortunately we have to wear masks when we have him) not sure how protected we are. The nursery is full so cannot take him more days so I can’t let her down. He’s a dear little soul so easy going and a joy to be around. We both love it but in normal times I’d be taking him to story time at the library or a music group that he belongs to but these places are closed and not likely to open for a very long time. He’s happy to go in the pushchair for dog walks or play with his duplo. As long as he has food when hungry and he’s warm he’s happy.
Well must try and get some sleep. Take care hope you feel better soon.
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