Things might be looking up?

[Captain_Birdseye]

Just an update...

Following a flare up of suspected pericarditis (Following myocarditis) recently I was put back on colchicine about 4 weeks ago.

The pain is less frequent, and less severe. I'm sleeping much better, and I can sit back on the sofa and lie on my back in bed - if only for a short while.

I've an appointment to get a 14 day ECG and an echo coming up too.

I'm starting to feel much more positive about the upcoming holiday, and more confident I'll be able to get travel insurance!

I've one week left of rehab and the nurse and physio have told me I'm looking better and more confident in myself...

So feeling much more positive!

I've made this separate post for anyone searching for myocarditis or pericarditis later on... there's a lot of questions for these conditions but not always answers or follow ups so just to keep the story going 🙂

[Hidden]

Hello

This is great news

I do hope you will able to get travel insurance and go on Holiday

I am sure by posting this that it will help anyone that finds themselves in a similar position

Hope the rest of your tests go well and please let us know how you get on x

[Captain_Birdseye in reply to Hidden]

Thanks BK, hopefully some sunshine this weekend will help the mood too 😁 xx

[Hidden in reply to Captain_Birdseye]

Hello

Same here or I would even settle it been dry and no rain but I agree it does help how we feel so lets hope it is a nice weekend and the sun and we can at least get in our gardens x

[Etzel]

Fingers crossed on your pericarditis, I had that many years back a couple of weeks after my MI and wouldn't wish it on my worst enemy. Way worse than the heart attack ever was.

[Captain_Birdseye in reply to Etzel]

I think as others have said, it is quite a unique pain, isn't it... definitely wouldn't wish it on anyone else.

I know there's some members have it come back quite often, I can only imagine how exhausting that must be.

[OpenMind1]

It's so good to read your update. We have very similar stories and I'm having a particularly tough time atm. I'm on holiday, having a really sedate one visiting National Trust properties and pretty little towns, but I've been feeling awful.. hit a wall of exhaustion in tge afternoon and my chest is constant sore with regular twinges of sharper pain.. not debilitating but it just makes me feel so vulnerable and aware my heart's not well. I suddenly feel so aware of my mortality ... sorry .. me, me, me... i really hope you keep growing in confidence and strength. I've not thought cardiac rehab was for the likes of us.. how did you access it? I'm also looking into paying for time with a consultant and tests (looks like there's a 3 month wait for an echo my consultant wanted me to have in March). Any tips or recommendations. Huge thanks and very best wishes. X

[Kristin1812 Heart Star in reply to OpenMind1]

OpenMind. Do seriously consider rehab……it got me moving three times, and seems to help nearly everyone…..your comment just caught my eye!

[Captain_Birdseye in reply to OpenMind1]

Hey!

You're right, normally the rehab is for post heart attack/surgery - but I was able to find the email address of the lady who runs our local one, she contacted my consultant and they agreed it would be a good thing to do to build up the confidence to exercise as my anxiety (must rest, rest, rest) kept me sedentary for so long.

Use this link to find your local cardiac rehab cardiac-rehabilitation.net/...

Click on the one you want to go yo and it should have the page with the email address for who to contact.

I really do recommend it, for building the confidence if nothing else, and you feel ready to move again... it's quite slow paced and you build up over the weeks until you're released back to the wild!

It's such an awful pain, like you say, not debilitating but exhausting as you're hyper aware, anxious, and probably not sleeping well. Then it's a nightmare to get comfortable so other aches and pains show up.

Are you taking anything for it now apart from otc painkillers?

The consultant I spoke to cost about £200 (was just before my pmi kicked in) and he wrote to my nhs GP to put me back on colchicine for 6 months, and I had the prescription within days. Within a week to 10 days I was starting to feel the difference. There can be some horrid side effects though so always worth weighing up. Colchicine didn't feel like it helped the myocarditis but I have noticed it with the pericarditis.

Disclaimer ti say obviously this is just my own experience of course!

[OpenMind1 in reply to Captain_Birdseye]

Thank you so much for sharing your experiences... it's so helpful to hear how things have been for you. I'm certainly still in the battle between feeling like I should stop fussing and get on with things and accept the pain is what it is.. and feeling like I should jusy stop and give my heart as much rest as I can. How did you decide when it was time to get exercising again? My consultant said 3 weeks of no pain and normal troponin... my trop seems to be sticking at about 30 atm (it was 380's) . I'm still on colchicine... interesting that uou differentiate between the myocarditis and pericarditis.. I've been diagnosed with both but not sure how they each manifest themselves. Really hope you keep getting better and better and have a fab holiday x

[Captain_Birdseye in reply to OpenMind1]

To be honest, in January I started to feel much better (this was 7 months post diagnosis) and felt like it was time to get going again... it was more a gut feeling than anything else, and I wasn't getting a lot of pain. I don't have my troponin checked regularly do I've no other way of knowing. But late Feb/early March I started getting pain again and got worse as the weeks went on.

With the pericarditis the pain is definitely more positional, so at the start I was able to ignore it by leaning forward or moving off my back if I was lying down. It got to the point I wasn't able to lean back at all without my breathing being affected, I got quite heavy in the chest. I was getting up in the night to sleep sitting up on the sofa. I genuinely thought I had heart failure my breathing was so bad. I found the pain could be quite sharp, but it felt like a friction or rubbing pain.

With the myocarditis the pain was more constant and usually dull with occasional sharpness, but I could lie down or sit back no problem, I had a little shortness of breath on exertion but other than that the breathing seemed fine.

You can have both at the same time (myopericarditis), and myocarditis can lead to pericarditis later as well.

[Captain_Birdseye in reply to OpenMind1]

You might find as well that if you feel good for a few days and "overdo it", it might come back to bite you in the toosh later... inflammation is a funny thing

[Kristin1812 Heart Star]

Thats really good to hear. I know a bit of what you’ve been going through and what an amazing pain pericarditis can be. I do remember how hard it was being unable to find any comfy position. So keep up the recovery!

[Captain_Birdseye in reply to Kristin1812]

Thank you, I bought a wedge pillow a few weeks ago and it was a game changer! Are you over it all now?

[Kristin1812 Heart Star in reply to Captain_Birdseye]

Yes! Only the one episode, I was lucky. I hope this is your last.

[HHH2017]

Glad to hear you are feeling a bit better. Hopefully the colchicine will work again. Its such a horrible, frightening condition.

Is there an exercise group you can join after rehab finishes? I continued in a hearties group for 18months and it was a huge support (only stopped due to the closure of 2020).

[Captain_Birdseye in reply to HHH2017]

Thank you, there are other programmes in my area, but most are during office hours unfortunately... there was one I was going to move on to that was more suitable but it's been suspended for a few months due to lack of staff... hopefully it'll come back soon!

[momander]

Hi Captain_ Bird's-eyeI hope you don't mind me teaching out to you. I put a post on this morning regarding taking a small amount of tamarind (0.5 g) with aspirin. The tamarind is part of a "chew" to aid constipation post op ( double cabg) Tos92 said you may be able to help due to your pharmaceutical knowledg I do hope so

Thank you so much

[Captain_Birdseye in reply to momander]

Hi!

Yes I saw Tos's notification pop up...

I'm at work just now so can't give a full response... but short answer is that at the dose you're taking it should be ok for you 🙂

I'll reply to your post with a proper answer later as I can hopefully explain how foods and herbal supplements can impact on pharmaceutical medicines, you might be interested?

[momander in reply to Captain_Birdseye]

Thank you so much!! and YES I am definitely interested!!

[Phily1982]

hi I was just interested in your condition as recently I was diagnosed with myopericarditis.. I’m still waiting on a scan to see the extent of the damage.. I feel fine but I do vape and when I do I get the same feelings in the center of my chest which I never used to get and my anxiety is through the roof with not knowing how I’ve gotta live from now on.. I’m into going gym which helps with my head space but I’m afraid I won’t be able to ever get back to that now.. your thoughts?

[Captain_Birdseye in reply to Phily1982]

Hi Philip,

I believe you'll gey back to the gym in time, but really your heart needs to rest... if you had sprained your ankle, you would keep the weight off it to allow it to heal properly with as little lingering weakness as possible... you need to do the same for your heart, and when you start again build up slowly.

I don't vape myself, but friends that di have mentioned palpitations and racing hearts while doing so, so I would try to avoid this until your condition is under control and managed. Could you try patches instead?

I see you've a main post, I'll jump on later after work and try to answer your questions properly, but have a gander at my previous posts and you'll get a feel for my journey and experience!