cardiomyopathy/ heart attack / stroke

[KateS24]

Hi, had a stroke in march and found I had a mini heart attack and found a condition Takasubo Cardiomyopathy. Nearly 6 months on and on several lots of medication. hard to explain but I have recently been experiencing the feeling of a racing heart and needing to take deep breaths as feel like I’m not breathing correctly I’ve found myself taking a gasp when I’m falling to sleep. This isn’t all day but happened last night and currently now after eating my tea!? Not due to see the heat consultant for another month

[Danceawaytheblues]

Hi KateS24, I am sorry to hear that you have had a stroke and mini heart attack. I have had two episodes of Takasubo Cardiomyopathy and can only speak from my experience. My first one was mild in 2002, however the one I had in 2020 was more serious. It took about 4 months before I felt able to do things again, and now I am doing ok. I am hoping to celebrate my 80th birthday next June. I hope that you get the answer`s that you need. Maybe have a chat with someone at your GP surgery. Best wishes Marianne.

[KateS24 in reply to Danceawaytheblues]

Thank you glad to hear your doing better! And will be celebrating your birthday…. I’ve just turned 35 and hoping this is my one and only !! But never know what could be a symptom or a normal problem as I never thought a mild head ach was Infact a blood clot on the brain

[fishonabike]

hi Kate, I am sorry to hear that you are experiencing this now

unfortunately issues like this are more common after Takotsubo than many cardiologists realise - by now you probably know that this is not a common condition, this means that most cardiologists see very few people with it and knowledge about it is still building

I had an episode 10 yrs ago and have been a member of an online support group for many of those years - we have many members who have issues like yours, but it can be difficult to get the right attention for them

I suggest that you keep notes on how often this happens, how long it lasts, what helps or makes it worse and what you were doing at the time - take your pulse and BP during the episode (if you have a BP monitor) and afterwards - this might show if there is any pattern and will give you some evidence to report at your appointment

By the way it is more accurate to take you pulse manually as you will also be able to feel if it is regular

but if these episodes get worse and you are struggling to breathe or have chest pain fir 10mins or more call 111 or 999

also I suggest that you join the Facebook Takotsubo Support Group, it is well moderated, very supportive and caring - we also try to keep up with current research and have a section with relevant medical reports and info

others here have also had Takotsubo so you can always ask more questions here too

[KateS24 in reply to fishonabike]

Thank you! I am only 35 and thought I just had anxiety! Turns out stress has caused this and I do not want it to happen again! I have just joined that Facebook group thank you!

I have been keeping an eye on my Bp at home thanks for the advice

[fishonabike in reply to KateS24]

a racing heart beat can be caused by stress - have you tried breathing exercises/techniques to help you through these episodes? e.g. bhf.org.uk/informationsuppo...

[Qualipop]

That feeling is EXACTLY how I felt when I was given ticagrelor. I know I was breathing ok; my sats were perfect. It just felt as if I couldn't get a deep breath. It's a known side effect. I got the medication changed to clopidogrel. Sorry I haven't checked your bio to see what you are taking but that description really jumped out at me because was identical to me. IT was so distressing I actually stopped taking it because my GP wouldn't change it. The cardiologist was furious but I just couldn't stand it any longer.

[KateS24 in reply to Qualipop]

Ahh thank you, I am on Warfarin. But this is a new issue I have noticed and been on the medication 6months . As I previously didn’t know I had any conditions I thought it was anxiety until I ended up in hospital/ I am only 34 and worried how I will get on with a normal life

[Qualipop in reply to KateS24]

It's a shame it isn't just a simple meds reaction. I struggled to explain how it felt when ticagrelor did exactly that and your description described it perfectly which is why I commented. I do wish you luck getting suitable treatment.