Cardiologist appointment (update)

[Helly75]

I met with 2 cardiologists this morning. They said I've had multiple episodes of myocarditis over the last 3 years, which would explain my symptoms. I've spent those 3 years not being believed or being told it's a mental health problem & feeling like I'd gone insane. Today for the first time I felt believed validated & listened to. I feel a huge sense of relief! Still feel like poo 😂 & as expected I cried my eyes out!

[Sunnie2day]

What a horrible time you've had trying to get a proper diagnosis! Are they calling it recurrent or relapsing myocarditis? I've had one bout with myocarditis and it was actually worse than my recurrent pericarditis acute flares so you have really my total sympathy for what you've been through with repeat bouts with myocarditis. Once was bad enough for me so I do have some serious compassion for you at the thought of repeat bouts, wowser!

Did they say anything about a treatment plan?

ETA: I would have been sobbing my eyes out meownself, good on yer not fighting the urge to have a proper cry!

[Helly75 in reply to Sunnie2day]

He actually said theres a chance I've had pericarditis aswell ! I was discharged in 2018 being told nothing was wrong,the cardiologist today said that was completely incorrect. So hes said now for sure its recurrent & symptoms can just stay with people. Hes suggested steroids which I declined for now, stopped betablockers & changed to verapamil. You've had a horrible time too ,just so sad the devastation this has caused us 😞

[Sunnie2day in reply to Helly75]

I don't blame you declining the steroids - they do work but the side effects are fiercesome. I'm still trying to lose the weight from taking the steroids for a month back in 1999

Recurrent myocarditis is probably quite like pericarditis with the same ways (more or less) of coping.

If you've not been already, keeping a daily log of heart rate, blood pressure, symptoms appearance/alleviation, and room temperature and humidity level will be quite helpful to you in working out ways to stave off another case.

Also helpful is being scrupulous about avoiding mould, sleeping with your upper body slightly elevated when not feeling 100%, and not sleeping on your left side during times you feel the need to sleep slightly elevated.

[Helly75 in reply to Sunnie2day]

It's just horrendous! I've def noticed I become very unwell in warm surroundings or weather ,cant lay down flat at all or lay on my side ,cant remember when I last had a decent sleep, I've had to stay downstairs on a chair this last few weeks 😡

[Sunnie2day in reply to Helly75]

If you haven't already, invest in an inexpensive battery operated digital hygrometer, I got mine on Amazon for under £10, it has a simple dual feature of room temperature and humidity level and I love that thing. It can be switched from C to F (I use F, a holdover from my years in the US).

Often I'll begin to feel unwell, look over at the hygrometer and am surprised to find the room temperature is reasonably low but the humidity is quite high.

I function best at 72F (22C) and no more than 50% humidity, you'll find your optimum temp and humidity if you start keeping a daily log (it's how I worked mine out).

On top of the recurrent pericarditis I also have 'presumed' microvascular angina and in my case summer is never welcome owing to higher temperatures and much increased humidity. I live for winter, lol!

Forgot to mention in my earlier post, no matter how well you love a long hot shower - give that up. Forever. Same with hot tubs, saunas, and steam baths. There simply is no extractor fan strong enough to pull the humidity of a long steamy shower out of the bathroom, sadly. But giving up the long hot showers has been one of the best things I do to fight off an acute flare.

[Helly75]

I must look into that, even a few minutes in direct sunlight I feel sea sick , I hate summer anyway but even more so now . Everything you're saying is so familiar, I cant use the shower anymore ,even a wee bit of steam & I've had it ,really shallow tepid baths is all I can do now . I like winter too but my whole arthritic skeleton doesnt 🥴

[Nettekin]

Hi helly. I can completely understand your relief at finally being given a diagnosis. The feeling of being believed and understood can be as effective as a💊 sometimes! It seems many people (and usually women) get fobbed off with a label of anxiety or (my personal favourite!) the menopause. I hope now you have a diagnosis you will find effective treatment. All best wishes xx

[Helly75 in reply to Nettekin]

Thank you! It's been a very tough 3 years ,I had my mental health questioned & menopause was brought up several times too lol but I was having none of it . Diagnosis, being listened to & believed doesnt mean cure but its helped me immensely xx

[Qualipop]

I know exactly how you feel. I suffered unbearable back, abdominal and leg pain for 10 years with no help, not even painkillers. I was bedridden for almost a year yet the pain clinic put me on the non urgent list which was over a 12 month wait. I diagnosed myself via Dr Google with absolute certainty but no one would listen. A private consult with a neurosurgeon got pretty close but he person he sent me to disagreed and wouldn't treat. FInally after 10 years I saw a new pain consultant who said "I know exactly what's wrong" and it was just what I'd been saying all along. I cried with relief and hugged him even though by hen it was to late to treat it. Just being listened to and validated really helped me cope ( and a lot of apologies from my GP for not believing me. I Know it wasn't heart but just being told it's NOT all in your head works wonders. Medics really need to listen and believe their patients.

[Helly75 in reply to Qualipop]

It's an absolute nightmare! The same happened to me with other things too ,I have had a neurological condition undiagnosed for years because gp thought I was nuts ,I got in touch with the neurologist privately & he then red flagged me to his nhs clinic. My condition had already progressed by that stage & nobody had told him 😡 so sorry you've went through the same thing x

[Qualipop in reply to Helly75]

JUst what I did; he even admitted me on NHS that same day but even so when passed on to someone else for treatment, they refused to believe the neuro surgeon. Don't you think a lot of it seems like "Oh it's a woman, it must be anxiety or she's over reacting"? or "It's hormones". It really is wrong, especially when it's heart. My GP spent months and months telling me my breathlessness was simply my back muscles in spasm. He apologised after my heart attack but now I have a different GP saying exactly the same now the breathlessness has got really bad again. She suffers from anxiety ( yes I do) so she's over reacting and it's something and nothing. You can actually seethe wheels turning. I can't tell whether it's heart, stomach or spinal muscles- that's his job. I'm sick of hearing "What do you think it is?" Why do you think I came to see you? I DON'T KNOW.

[Helly75 in reply to Qualipop]

It was suggested to me on numerous occasions to take anti depressants or anxiety meds & me being upset & distressed was always focused on first,that just fills me with absolute rage because the reason you've went there /symptoms dont get addressed. I was always able to stand up for myself but it all wore me down to the point I almost gave up . We suffer from anxiety from not being listened to & relentless painful symptoms . Youd wonder how things would have worked out differently if listened to in the first place

[Qualipop in reply to Helly75]

Oh yes I've had that too. YOu are depressed. Yes probably but that's being caused by the pain you are not treating or diagnosing plus constantly having only two things thrown at you for pain; gabapentin and amitriptylene. Beyond that they have no ideas at all. I don't want the pain masking, I want the problem solved.

[Helly75 in reply to Qualipop]

I've tried both of those meds but they dont agree with me ,sometimes side effects arent worth it for me . I feel instead of meds I'd rather know why I'm in pain first & look at treatment after that not the other way round but what would I know 😂😂

[Qualipop in reply to Helly75]

Same here. Amitrip left me like a zombie and Gaba made me seriously suicidal and neither of hem worked at all.

[Gladwyn in reply to Qualipop]

No wonder you suffer from anxiety!

[Gladwyn in reply to Qualipop]

What hell you have been through and that’s shocking! I’m glad for you that finally you were believed. All the best. 😀