Increase or change in meds

[Fluffybee]

This change in meds has nothing to do with my recent trip to A&E as the letter was written before I went in !!!! It was due to a phone call I’d made about 3 weeks earlier to a cardiac nurse at the hospital who has now spoken to the same registrar who doesn’t know what spasms to do with the heart are !!!!!

Anyway I’ve been asked to go on or increase, as the names different, Diltiazem at 240mg, asking me if that’s what I want to do !!!!! He’s copied me in from a letter from my Gp so I’ll see what comes from that.

Surely if A&E had checked my cardiology notes they’d have seen that was happening and told me then 😡😡😡😡

[Bingo88]

Obviously the left hand Doesn't know what the right hand is doing love It really is a worry And a waste of time. Take care Brian

[Fluffybee in reply to Bingo88]

My Gp just emailed me asking what happened at A&E the other night when he sent me in by ambulance so now waiting for a message back. Hope he doesn’t ring as that bloomin wobbly chin of mine has returned!!!!!!

[Milkfairy Heart Star]

Fluffybee

I share your frustrations.

You have to manage your own care sometimes when you have a poorly recognised condition.

A&E don't always look at your main hospital records.

I have an Admission plan for this reason.

Diltiziem is the usual treatment for Vasospastic angina.

[Ecki in reply to Milkfairy]

What's an admission plan?

[Milkfairy Heart Star in reply to Ecki]

As I live with a rare form of angina my Cardiologist with the Pain Team and my input have written guidelines about how I should be cared for when I need to go into hospital.

It gives my diagnosis, instructions about my treatment and the need to be admitted to a Cardiac ward.

My symptoms can look like a heart attack so it avoids unnecessary interventions like an angiogram.

There is also coordinate my care where with your GP you can write down your wishes about how you would like to be cared for when you are admitted to hospital.

coordinatemycare.co.uk/

[Fluffybee in reply to Milkfairy]

I’m going to sort that out today, thanks Milkfairy 😊

[Ninjanoo]

Oh hun! Makes you wonder why we bother when it seems we have to be the ones doing the educating!!

I've been given Amlopidine as a last chance saloon but am getting itchy skin - again!! Already tried diltiazem and Verapamil and unfortunately had same reaction along with swollen ankles so had to stop taking them. Been told to see if it settles and if this doesnt work GP considering putting me back on beta blockers???? The beta blockers that I was weaned off of because they are contraindicative to vasospastic angina! Work that one out!!!

I feel your pain and frustrations!!! 🤬🤬🤬😭😭

Oh and work have told me I need to consider my employment options just to add to things!

Why is our condition so misunderstood????

Rant over!!!!

[Milkfairy Heart Star in reply to Ninjanoo]

Everyone we require a group hug and let's altogether shout very loudly 🗣

Isn't it about time medics knew more about Microvascular and vasospastic angina🤬

😳😫☹

[dunestar in reply to Milkfairy]

Yes, lots of group hugs and lots of shouting. Some days I am optimistic that things are changing but then when I hear Fluffybee's story it's hard not to get depressed.

[Fluffybee in reply to dunestar]

Dunestar

I’m so sorry I’ve been depressing, I only meant to have a rant, I’m usually a positive person, just wanted to say how I felt, so sorry if I’ve made you feel bad !!

[dunestar in reply to Fluffybee]

No, no don't worry Fluffybee! It's not you who is depressing me but the situation where a registrar doesn't know what vasospastic angina is. I do believe we are moving forward in our quest to get our conditions more widely recognised in the health service but from time to time there are bumps in the road.

[Sunshinebrew]

So frustrating for you, but they have increased the meds so this may make a difference hopefully

Are you feeling any better?

Don't worry about being emotional it's very understandable

X

[Fluffybee in reply to Sunshinebrew]

Yes hopeful they could make the difference I need.

Still feel the same but luckily it’s intermittent, I have used my GTN spray a few times today, I leave it until I really have to use it or maybe I should use it earlier, who knows 🙄

[Fluffybee]

Thank you for your rant 🤗 what’s happening at work, are they saying you’ve got to make decisions on reducing hours etc, all comes at once doesn’t it.

This condition which I’ve never heard of until now is just so complicated, when trained medical Dr’s don’t know what you’re talking about or understand it, I feel it makes me sound like a complete fool, so ‘anxiety’ seems to fit the diagnosis nicely for them.

🙄

[Ninjanoo]

My SSP has stopped so HR are now saying make a decision you're either coming back or not. Explained to GP what's happening and got told I'm not fit to go back when I cant function at home let alone try and add work into the equation. She's signed me off for another 2 months while they try and get me on something that helps and see if there's an improvement. Have had an Occy Health assessment back in July so they're not being kept in the dark they know exactly what's wrong - speak to my Line Manager weekly to keep them updated.

Doesnt help when cardiologist says it's nothing to do with your heart although has diagnosed coronary artery spasm himself (he did the flippin angiogram!) and is still trying to blame oesophageal spasms for what's happening when it isn't!

You would think the amount of people on the forum with this condition that the medical profession would be a bit more sympathetic/empathetic about it rather than dismiss you because you're otherwise healthy.

Dont feel bad about having a wobbly chin mine's been wobbling for a fortnight or more!! 😊😊❤ Thankfully have a dog but think I'm even managing to depress him now the way he's been looking at me lately!!!

[Milkfairy Heart Star in reply to Ninjanoo]

When I took ill health retirement I was given permanent incapacity.

My manager was stunned as they had never known anybody get this before. Her comment

'Oh this heart condition of yours is serious then!'

We are unicorns in fairyland for some Cardiologists they can't quite see beyond the blockages

🦄🧚‍♀️

[Fluffybee in reply to Milkfairy]

Do you know what Milkfairy, right now I wish I was in fairyland, and the non believers of this heart condition are unicorns who nobody believes in !!!!!!!

My wonderful Gp has prescribed me some oromorph to take when my chest gets really bad. I’ll probably hardly use it but it’s nice to know it’s there. 😊

[Ninjanoo in reply to Milkfairy]

My GP was talking about medical retirement back in July but since then had 3 sick notes instead. Income Protection doesnt cover me as I dont fit their criteria and according to them my condition isn't incapacitating therefore no reason why I cant return to work and carry out my job role.

Being amongst unicorns and in fairyland sounds most appealing right now ❤

[Fluffybee in reply to Ninjanoo]

Group going hug brilliant idea, thanks Milkfairy 🤗

Oh what a situation, everyone’s full of broken promises, what are you going to do? Have you tried talking to your Gp again to see if he can help you more.

If you want you can always private message me ? Those unicorns are calling me louder by the minute 😄

[Milkfairy Heart Star in reply to Fluffybee]

Anybody got some spoons?

[Fluffybee in reply to Milkfairy]

How many would you like, I may have to scratch about a bit ???

[Fluffybee in reply to Milkfairy]

Are you ok ??? 🤗

[Milkfairy Heart Star in reply to Fluffybee]

Winters coming🥶

[Fluffybee in reply to Milkfairy]

I know, not good, I’ll save you up some spoons, keep warm wrap up, now off to bed, luckily thought of my electric blanket to turn on to snuggle up in 😇

[Sunnie2day in reply to Milkfairy]

I've been thinking about you and Fluffybee as I watch and feel autumn coming in with the 'promise' of winter on its heels - I know the cold weather makes your cruel combination of MVA and VA worse. I'll be thinking of you straight through to spring and wishing you both warm winters!

[Fluffybee in reply to Sunnie2day]

Thank you Sunnie2day it’s my first winter I know what’s been causing the pain, so knowing that I’ll be more organised with clothing etc.

How are you getting on ? 😊

[Sunnie2day in reply to Fluffybee]

Honestly I'm more than a little embarrassed to even say I have microvascular angina despite my cardiologist now calling it that in all correspondence and discussions - mine is very nicely controlled with the minimum of medications and minor readjustment of lifestyle, and I love-love-love winter as it is the one time of year the presumed MVA doesn't play up.

Milkfairy is going to be your best guide through your first winter but I can lob in a wee tip: 180s brand ear warmers. They 'mount' from the back and give the most delicious ear covering - cosy comfy warm doesn't begin to describe it. Be sure to get the actual 180s brand, though, there are very disappointing knock-offs out there. The 180s branded ones feature a head size adjustable back band+cushy wadding and Thinsulate insulation to ensure that comfort and warmth - the knock-offs are 'one size fits all' (hahahahaha!) and you can feel the wires on your ears.

Here's a link to the 180s page on Amazon so you can explore the brand:

amazon.co.uk/Earmuffs-180s-...

[Fluffybee in reply to Sunnie2day]

😂😂😂😂😂😂😂😂 you make me laugh, not sure you’d make a good sales woman for the product 😂😂😂 I want to get some now just to see what they’re like, sound really comfy.

I’m really pleased you’re feeling well with your micro vascular angina, just hope you can get your consultant to stop changing his mind 😡

[Sunnie2day in reply to Fluffybee]

Really, he is amazing now we've established a good working relationship. I quite like him. He listens, looks up things (for example, my recurrent pericarditis is more likely down to a nasty bout of Dengue Fever rather than my Rheumatic Heart Syndrome, he said he'd never heard of Dengue leading to recurrent pericarditis but he looked it up and had the grace to tell me he was wrong and I was correct ).

And while at first he was scratching his head at the angiogram result of clear arteries, he buckled down and did his research, coming back with the presumed MVA and putting me on the list for the definitive diagnostic (angio with acetylcholine provocation).

Bonus: as I'm responding so well to the medication regime, he's happy for me to keep being knocked to the back of the very long queue for that test. There are people with far worse cases who should rightly be at the very top of that long queue, they can't be treated without a definite diagnosis and in the meantime are really suffering. I'm fine, so, no rush!

[Ninjanoo in reply to Milkfairy]

Spoons?? Was thinking more along the lines of ladles! 😊

[Ninjanoo in reply to Fluffybee]

I'm thinking of running away to live in a shack on a remote island although knowing my luck I'll arrive in time for hurricane season!!! 🤪

Think GP will catch up with me next week to see how new meds are going so will broach the subject again. 🙄

[Fluffybee in reply to Ninjanoo]

That’s terrible, ‘snap’ our chins will be exhausted wobbling away like that, I know how you’re feeling I’m sure everyone has been here at some point especially with the coronary artery spasms and micro vascular angina I just cannot understand why it’s not so well recognised, and it’s a serious condition.

It makes me so angry when Dr’s go back on things or say one thing and the letter you and your Gp receive says something different or leaves key words out that we think are really important to help with being off sick etc.

Just really angry and round up at the moment about it all, sooooo frustrating.

My dog knows something is wrong but she gives the most delicious cuddles, we’re all here for you and know where you’re coming from so never feel alone 🤗

[Ninjanoo in reply to Fluffybee]

Aww bless you - same goes for you too 😊

Best thing I ever did was to stumble across and join this forum 🤗🤗

I know there's people suffering with a lot worse conditions than me (honestly I'm not normally this whingey!) but it's more the frustration of getting across to medical staff just how debilitating it is. And like you say they say one thing to you and when they send the letter to the GP it's completely different!

Heyho! I really hope the diltiazem makes you feel a lot better and you find things improve.

As Milkfairy said earlier group hugs ❤

[Denva]

Diltiazem has been wonderful for me. Almost instant improvement. You won’t know yourself. Take care

[Fluffybee in reply to Denva]

Hi Denva

I’m already on a lower dose of Viazam which is apparently the same one but a different name but doubling it with everything crossed it makes all the difference 🤞🏻

[stillaboveground]

Hi Fluffybee it gets me that they ask you what you want to do, we go to the experts for them to tell us what we need to do. If we all new what is best we wouldn't need them at all. Hope things are better for you soon. Take care and keep safe. Ruth