I keep coming back to add more... I think I must bore people with always talking about my health just now, but its so helpful to get things written out...
My previous posts will show my background in more detail (and have had some very useful and kind replies, thank you!)... but briefly, a couple of months ago I was diagnosed with myocarditis, all scans (ECG, echo, CT and MRI) have all been very reassuring and point to good heart health, however I am still experiencing some symptoms (chest pain and pins and needles mainly) and have been since the start (about 8 weeks ago). So all advice points to plenty of rest, which I've tried to adhere to!
Following the good news of the scan results, cardiologist recommended coming off all medication except colchicine. So I did this 2 days ago after clarifying with a GP, coming off clopidogrel, aspirin, Bisoprolol, atorvostatin and Ramipril. No need to wean off.
Last night I was sitting watching tv when i suddenly came over dizzy amd started sweating. I noticed my Heart rate had jumped from 80 to 140bpm and my blood pressure was 138/81 - higher than normal. I got a slight tingling in my left hand and felt a mild chest pain. I decided to go to A&E - obviously very worried.
It was a long wait (10 hours) - but my symptoms subsided and troponin levels were less than 5, so all good. Doctor is confident its not "cardiac" as such, and has recommended staying off the medication and more time off work. I was feeling reassured, and a bit silly.
Now I'm home again, on my own as partner has work and I have the tingling and chest pain that has been an intermittent companion for the last few weeks... and I'm sitting worried about it again. I worry over feeling my heart rate go up (real or imagined) and every niggle, twinge, tingling and pain regardless of where in the body it is.
Rational Captain knows its most likely a combination of the myocarditis recovery, too much stress (work) and my body getting back to its normal rhythm after stopping meds. I've also been advised colchicine can cause chest pain and tingling - has anyone experienced this??
The anxiety is very real! I'm no stranger to anxiety, but this feels more niche!
Thanks for reading... it's really helpful to have this space!
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Captain_Birdseye
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When we fear something whatever that is then the feelings we feel more the thoughts we think more about what they are and so on
Reassurance stops this for a while but then those thoughts and feelings come back again
We do have a rational side which is frustrating as in your post you can write down exactly what the chances are that is happening your body adjusting to coming of the meds but then that anxiety side takes over and wipes out those rational thoughts
Of course been home alone at the moment will not be helping leaving you more time to focus on what you can feel
Have you tried any meditation ?
While you are on your own you could go on You Tube and take a look
I have not mastered the art of it as yet as it is not easy but those that have they give great feedback how much it helps them
Your confidence over time will get better and keep hold of that thought when you feel the fear they have told me I have good heart health
They have told you that you need rest take advantage and put your feet up x
An interesting take on religious prayer/meditation... I'm not religious and I have good grounding practices so I'm not too concerned about most points raised here.
I agree with some of the message though, like many things in life, some can take it too far. Some throw themselves into meditation thinking it's the be all and end all. Some groups/leaders promote potentially dangerous ideas, or take advantage of people in a vulnerable state.
Most of us use meditation as a tool in our arsenal, along with other pursuits like walking/exercise, reading, whatever helps us relax. But it's like everything else - care needs to be taken, and if at any point one feels unsafe, stop.
I do hope the feelings pass soon... I need ti become a lot more patient with myself though!
Pre-plague I attended a weekly meditation class for a few years to help with anxiety, unfortunately I've fallen out the habit... but now might be a good opportunity to bring it back into my life again! Especially under doctor's advice to rest 😉
I also use the loona app sometimes, I've found this really helpful to get the brain ready for sleep! X
i can empathise with this , my last episode of myocarditis was april last year & i still have pain & random weird symptoms all the time . You def arent alone . The thing that annoys me is the suggestion that very low troponin according to multiple ED drs & cardiologists means you cant be having pain, in my own experience thats just not reality & they will say its non cardiac until the cows come home . Unfortunately with myocarditis they will go by the text book & not what the actual human being is going through . I was given colchicine & ibuprofen for 3 months . I also have myself worried half to death xxx
I'm so sorry to hear you're going through this, it can be such a lonely experience sometimes, and I'm really grateful that others are willing to share their experiences here, it does ease the burden a little.
I'm in a very fortunate position where my doctor believes I'm in pain and is talking to the cardiologist about pain management. Just because the scans are clear doesn't mean you're not hurting.
Have you spoken to different doctors, or asked about pain management that doesn't involve analgesics?
ive tried everything for the last 4 years ,my gp is brilliant i have to say . I cant take ibuprofen or anything along that line, i just use paracetamol & hot water bottles front & back along with propping myself up with pillows at night . The key is to rest even when you feel well enough to do the opposite, take as much time off work as you can ,look after yourself xx
hi am on all the tablets tou have been taken off apart from the colchicine i wwas on ramipril soon as had heart attack and on for a while but i sstartwd getting stomach pains and trouble breath my blood pressure was was afdected going too low so i had to come off ramipril for a while as it rurned out from test fluid on the lungs so put on water tablets . I am back on ramipril minus the colchicine and am doin ok now but am on a low dose at rhe beginning i was feeling dizzy and tingling fingers thats when they took me off it first time but being back on a lower dose and not taking colchicine anymore am doing ok so far it is just my blood pressure i got to keep eye on as it tends to go like 92 over 74 which is low for me . So i have to keep having it checked and blood test done . How long have you been on colchicine .
Sounds like you've been through the works with this, I'm so sorry! It's incredible how drugs act differently in different bodies, and how each cocktail can change things!
I had some issues with ramipril so I'm not sorry to see the back off it. The colchicine I've been on for maybe 9 weeks now.
It's funny you replied this just as I was reading up on coming off Bisoprolol! I honestly think this is the main source of what I'd been feeling, I was on 5mg, so a fairly high dose to just stop! I actually did what I'd never advise anyone to do without seeking advice, and I took half a dose this morning... I'm starting to notice the effect now, and I do feel better.
I'm going to go to the pharmacist on monday to see what they advise before going back to my GP, as she said there wouldn't be a problem.
anxiety is real and it is very hard to get rid of. I have tried many things and currently have been on fluoxetine since 2008. However, and this experience has made me very weary of any tablets. I went through a patch last year and was intending to come off. Flouoxetine But the medical profession try to up you one notch. So went from 20mg to 40mg. But i was getting headaches so after a month decided on my own back to go back to 20mg. Thinking thats fine. Well three days later i got double vision and ended up in a and e. They could not find anything obviouse and sent me home. So i went back to 40mg. Then this time i discussed with doctor and i slowly weaned back to 20mg. This is when it all get more interesting.( Not really ) in february this year i had a dizzy spell and collapsed. Did not pass out. But came around after a few minutes had a cup of tea and a bit of toast and the nurse at work took my blood pressure. It was high so she let me go home. I wanted to get to the bottom of this so ended up at doctors and ended up on calcium channel blockers that was fine. So i continued for a few days and felt not too bad, but it had put wind up me so in the end. Being an engineer i said that i wanted to know if my issue of anxiety and depression was electrical or mechanical. Because blood test had all come back normal. But i had never had an ecg. Thats when the fun started. Had ecg ended up at a nd e and thats when they found my epsteins anomoly. Birth defect. And now that has sent the anxiety to new levels. Iam currently trying hypnotherapy and have manged to see a psychologist on nhs. But again it is me that needs to remove these thoughts , try to look at the positives and live. But it is hard. It really is. But by having the ecg it has found an issue. Good or bad at least iam being looked after and monitored. But my mind goes from one extreme to another. Now on blood pressure tablets of lisinopril and spironolactone. The blood pressure has come down but now having lower blood makes me weary when standing up too quickly. It is one journey that would not want on my worst enemy.
What a nightmare, I know what you mean, I wouldn't wish this on anyone.
I used to have a manager whose only solution was that I stopped worrying, and cheered up... wish I'd thought of that myself, thanks! 🙄
It's good to see you're recognising the condition and getting support where you need it! I came off anxiety medication years ago and I've been trying to manage it myself with some success... but this heart journey has added an extra wee nugget in to the mix!
thanks for the reply. Yes it is a nightmare. The trouble is i talk to lots of people. And i suppose iam trying to get confidence back to be able to live a normal life that i once knew. Bit like a child seeking reassurance. I phone my cardiac nurses to try and get feedback, the positives i get is iam on the right medication. Iam being looked at and monitored. And iam in a better place than i was before February. But i do find that iam going around in a big circle. I need to try and break that circle. To move forward i have to start doing stuff to take my mind off the heart issue. But i have suffered anxiety as i said for many years before, knowing about my congenital heart disease is the icing on the cake. One thing that i was told to try and put me at some ease. Was the folfollowing. What size feet are you i said 7. Would like them to be a size 10. No i said happy as iam. Same with my heart disease i was born with it and survived with it for 56 years. Done lots and had a good life so would you change it? Well i would like to change it but as i was born with it, that is what makes me me . See this is where it gets hard. I suppose i would love to have not been born with it but thats what i got and i have got to keep moving forward. And thats the bit iam trying to do is move forward.
I’m a bit behind and so apologise if you’ve already mentioned this elsewhere, and it’s obviously not the main thread of your posts but….you said your cholesterol was high and the hospital was checking for FH but in the meantime you were on a statin.
Did you get the results of that?
Why were you taken off the statin ?( I would have thought it won’t have had time to lower your cholesterol and you would need it long term should you have a genetic tendency )
You also mentioned you felt that you thought you should try lifestyle/dietary changes-is this helping?
I hope that you are feeling more in control of your health, mental and physical. These things are very scary to begin with but with more knowledge and understanding comes an ability to exert influence over lifestyle and choices.
Input always welcome 😊 My genetic screening came back clear thankfully so my thyroid is bring investigated as a potential cause for the high cholesterol reading (underactive thyroid diagnosed 15 years ago) - while I've been treated for T4, we don't routinely treat T3 on the UK.
The statin was stopped because my arteries are clear, so there are no cholesterol blockages to stabalise. Despite this I'm still needing to lose weight etc so this has been a kick up the bum for me and I'll continue with it... unfortunately I still can't exercise at the moment so will work on that later.
I'm taking each day as it comes for now as the pain and discomfort are unpredictable. Trying to mix rest with being gently active, as this takes my mind off it a bit.
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