Fluffybee

[Fluffybee]

Hi,

I'm using this site for the first time and just wanted to say hello.

I've just been diagnosed with prinzmetal angina or variant angina.

I've got questions to ask anyone who has the same as me, also if anyone who'd like to say hi 😀

[Maisie2014]

Hello Fluffybee. Rory but don’t know anything about angina. I’m more your heart attack and stent fitted February 2019. Welcome.

[Fluffybee in reply to Maisie2014]

Thanks for sending a message it's really nice to know someone's out there.

Sorry you've been through so much, hope you're ok now ?

[Maisie2014]

I’m getting there thank you. There are lots of people on here who are very supportive. Take care.

[Milkfairy Heart Star]

Hi Fluffybee

Welcome to the forum

I have lived with Coronary vasospastic angina for 8 years. I have vasospasms in my small vessels microvascular angina and large vessels coronary artery spasms.

Vasospastic angina is the term now more commonly used to describe coronary artery spasms, Printzmetal or variant angina.

Are you based in the UK?

The BHF have this information about Vasospastic angina

bhf.org.uk/informationsuppo...

[Alessa69 in reply to Milkfairy]

Thank you for that helpful link Milkfairy ! I have PAF & Vasospastic Angina .... Took me an awful long time to get diagnosed , as my very respected EP was intent on looking for CAD for many years........ Why is it so hard to get Vasospastic and Microvascular Angina diagnosed?

This site and AF Association site have been a lifeline for me this last 2 years

Fluffy Bee , you will find lots of help here , and onnAF Association site 💓

[Fluffybee in reply to Alessa69]

Hi there 😀

I cannot believe I've found this site, it's quite lonely as I'm sure you know when there's no diagnosis for a long time, think you're going crazy or as one doctor said thinks I'm depressed !!!

The last letter I had said I have variant angina and micro vascular angina, just had my

Amlodipine increased and seems to be helping. Do you mind me asking if the meds you're taking has made all your pain and in my case heavy chest go away ?

[Fluffybee in reply to Milkfairy]

Yes I am based in the UK, thanks for the link 😀

[Milkfairy Heart Star in reply to Fluffybee]

Hi Fluffybee

The BHF have this information about MVA

bhf.org.uk/informationsuppo...

How has your Microvascular and vasospastic angina been diagnosed?

My specialist is researching into microvascular dysfunction at St Thomas' hospital

ahajournals.org/doi/10.1161...

[Fluffybee in reply to Milkfairy]

Hi milk fairy

I've had an ecg that showed when I had chest pain the signal wasn't getting through to my heart, if I've got that explanation right, angiogram which showed the coronary arteries to be completely clear, ultrasound which showed the bottom of my heart wasn't squeezing properly, the cardiologist said with all the scans and ECG symptoms and a stress test its variant angina and the other symptoms etc was micro vascular angina. Sorry I keep using different words for the condition, but still in a muddle with all the new informion

How was yours diagnosed ?

[Milkfairy Heart Star in reply to Fluffybee]

Unfortunately microvascular and vasospastic angina are poorly understood and recognised.

It is encouraging that your Cardiologist has considered microvascular and or vasospastic angina.

There are various theories about the causes of microvascular angina

One is thought to be an inability of the small blood vessels to dilate in response to exercise- microvascular dysfunction.

Some of the newer Cardiac MRI can detect this type of MVA.

Another type of MVA is due to vasospasms in the small vessels.

Vasospastic angina is when the large blood vessels coronary arteries go into temporary spasm. Usually the chest pain comes in clusters at rest and at night or early morning.

It takes trial and error to find the best medication that will help you best. There is no one size fits all.

I had a very specialised angiogram when they injected acetylcholine into my coronary blood vessels. Acetylcholine makes normal blood vessels dilate and relax. Mine didn't my coronary arteries and microvessels all went into spasm.

It takes time to adapt and find what your particular triggers for your angina are.

Mine are the cold, emotional and mental stress.

There are quite a few of us on the forum with either MVA and or Vasospastic angina

We all have a different experience and treatments. I am sure they will be along to share their experiences with you too.

[Fluffybee in reply to Milkfairy]

Thank you for posting that it was really informative.

Sorry I’ve still got lots of questions to get more information from anyone who actually lives with vasospastic angina and or microvascular angina.

Hope you don’t mind me asking over the time you’ve had this have the medications made a really big difference or even gone ?

[Milkfairy Heart Star in reply to Fluffybee]

Hi Fluffybee

We are all individuals and respond to medication differently.

I am unfortunately badly effected and my Cardiologist has said I am at the extreme end of the spectrum.

However I hope this will not be your situation. So please don't feel this is how things will turn out for you.

Beta blockers are contraindicated if you have vasospastic angina as they can make your vasospasms worse.

Whilst beta blockers can help with people with MVA due to microvascular dysfunction.

I ended up in hospital once after being prescribed beta blockers as they made my vasospasms worse

I am lots of different medications none ' work' just help manage my angina. I also need to go into hospital from time to time for treatment with IV GTN.

What helps me most is how I mentally approach my condition. I acknowledge the sense of disbelief and bewilderment when you are first diagnosed.

Be patient and kind with yourself it takes time to adjust.

I exercise as much as I can it improves the function of your blood vessels

I follow a Mediterranean diet

I maintain my weight my BMI is 21

I manage my stress and anxiety through Mindfulness meditation, Tai Chi and yoga.

I use breathing and relaxation techniques to manage my angina episodes.

I do not use GTN spray as it helps but I then get worse rebound pain.

In the winter I wear many many layers of clothes and I have special thermal vests and leggings . I wear silver lined gloves from the Raynauds society to keep my hands warm.

I always cover my nose with a snood when going out to stop breathing in cold air which will set of my vasospasms.

It is a complex condition and there can be alot of guess work with trial and error to find the right combination of medication and life style choices that work best for you.

[Fluffybee in reply to Milkfairy]

Hi Milkfairy

Just thought I’d ask how you are ?

[Fluffybee in reply to Milkfairy]

Hi Milkfairy

One of those days today 🙄 I knew it would be as if had a heavy chest and ache and couldn’t get my breath a couple of times during the night then as soon as I got up it still went on so GTN spray a couple of times, it’s just a day/night of lots of symptoms.

Do you get any pain heavy ness etc during the day sometimes ?

[Milkfairy Heart Star in reply to Fluffybee]

Hi Fluffybee

Thank you for asking after me that was very kind. I have had a good day for me. However I have still had angina on and off all day a few episodes worse than others. Though I haven't needed to rest in the afternoon.

I do get very tired in fact the fatigue can be a killer.

Hopefully you will have a better day tomorrow. It can be a case of learning to take each day as it comes and pacing yourself.

[Fluffybee in reply to Milkfairy]

I was going to ask if that complete exhaustion was part of it, i used to spend ages in the garden take my dog for a walk and do a physical job all week and have 7 people in the house, I cannot even put a couple of plants in without feeling so worn out.

Is that a typical thing, or maybe I’ve just become lazy being at home, mind you my dog loves me being here with her 😄

Hope you have a better day tomorrow, fingers crossed

[Milkfairy Heart Star in reply to Fluffybee]

Yes I would say that as you say complete exhaustion is part of the condition.

It sometimes feels like a steam roller has gone over me. I feel so tired I could cry.

Not having any stamina or energy is challenging

[Fluffybee in reply to Milkfairy]

So sorry you feel so bad, but I understand completely as I feel the same most of the time, it affects you in many different ways doesn’t it.

This really is bad timing as one of my daughters has just become pregnant with twins !!!!! I’m going to struggle to help like I want to and been desperate for grandchildren for ages then this comes along, I’m sure there’s plenty to do with most things so I’ll help in some way

[stillaboveground]

Hello Fluffybee, welcome to the forum, sorry I can't answer much about your problems personalty, but some of the amazing people on this forum will be able to help you. I am here just for support at this time. Take care, keep safe. Ruth

[Fluffybee in reply to stillaboveground]

Hi there,

Really nice to hear from you and a few more people already 😀 it's really put a smile on my face to know there's people to chat to and them to me if I can help in anyway.

Keep safe as well

[Sunnie2day]

Welcome! Love your screenname

I have recently been diagnosed with 'Angina with normal coronaries' (I also have a few other heart conditions, all well controlled with medication and lifestyle) and after the pandemic will be investigated for microvascular angina (MVA). My angina seems to be responding very well to Bisoprolol 1.25mg+300mg aspirin every morning and the occasional GTN spritz and really I'd be content to continue on with the diagnosis of angina with normal coronaries - but my cardiologist has taken the decision (rightly, he has my full confidence) once the pandemic is over I should have a bit more investigation to rule out MVA.

You're very fortunate to have cardiology care aware enough to recognise you have MVA and it's good to read you say your medication seems to be helping. It can be something of a long journey to finding the right combination and dosage to control variant and MVA but it sounds as though your medical team is 'on it', yay!

Again, welcome!

[Fluffybee in reply to Sunnie2day]

Thank you 😃

I’m now on ...amlodipine, atorvastatin, bisoprolol, Isidore-5-mononitrate (chemydur 60xl) and the GTN spray which I use on some days then now the amlodipine has just been increased I even have a day here and there with no spray at all.

I’ve got another phone call consultation in a couple of months due to the virus not seeing him face to face unless things change by then to see what or if anything happens next.

[Sunnie2day in reply to Fluffybee]

Waiting between appointments is a special kind of torture even with a diagnosis and medication regime. In my case the angina investigation moved quickly (only seven months from initial 'wobble' to diagnosis and treatment plan) but between appointment and test dates then waiting for the results consultation appointments, I really did feel as though my life was on hold despite almost immediately feeling better with the beta blocker and aspirin. LOL (but it really wasn't funny), from the first visit to the GP when she put me on the beta blocker to the first test appointment (echocardiogram) I felt so much better I apologised to the tech for taking up her time.

But I knew I was 'not well' and there was serious problem so the waiting was, again, torture. Nearly everyone here says the same thing - the waiting is the worst. Being able to connect online with people who 'get it' is the only way we get through the waits.

So, you're in the right place here - every one of us has 'been there-got the tee shirt' on this heart trouble lark! Any time you feel alone-frustrated-down-worried or have a 'silly question' (no such thing here ), log on and we're here for you.

[Fluffybee in reply to Sunnie2day]

Oh thank you so much, this means so much to be able to talk to someone who actually knows what I’m talking about.

I get the torture between appointments it’s just so long.

I’ve already started on a bad night/day I’ve had chest heaviness and ache more noticeable now I’m awake, had 2 sprays of GTN in some ways I dare not do a third as that means hospital !!!!!

I’ll be fine.

Hope you’re ok 😃

[Sunnie2day in reply to Fluffybee]

You sound a sensible person - if you need that third spray, have it and then make the telephone call. None of us want to go to hospital but all of us say the same thing after we do and the problem is sorted - 'Well I didn't want to but now I'm glad I did!'.

I hope you don't need the third spray and things ease up for you as the morning progresses but again, if you need it, you need it. Your body is trying to tell you something and it's always best to listen to it.

[Fluffybee in reply to Sunnie2day]

I know you’re right 😊 but really feel I’m wasting hospitals time as I’m already on meds and seeing the cardiologist in a couple of months, so think what else can they do, so I’ve been using the spray and testing with fingers crossed 🤨

[Handel]

Hi Fluffybee (what a lovely name).

I can't offer much in the way of help but wish you all the very best. You've got some really knowledgeable and good friends on this forum xxxx

[Fluffybee in reply to Handel]

Thank you for sending me a message, Every one on here have been great with lots of information and I only joined last night. 😃 x

[Handel in reply to Fluffybee]

There are loads of lovely people here who really helped me a lot when my husband was going through a really bad time with his heart.

I seemed to be asking several questions a day and apologised for doing that. I got such lovely responses and was told there are no stupid questions!!

Also some great characters who really make you smile with jokes. You'll no doubt come across these in time.

Keep in touch xxxx

[080311]

Hello, and welcome I haven’t got any information for you about your condition, I have had Aortic valve replaced and bypass. But we are all here to give you a shoulder to lean on if you need it. We are all travelling on the heart road,

Take good care stay safe

Best wishes Pauline

[Fluffybee in reply to 080311]

Thank you 😃

Sorry you’ve been through so much, I hope you’re on the mend now.

Thanks again

[080311 in reply to Fluffybee]

I am fine it’s nearly 4 years since my op, and every day I am grateful to the medical team that gave me my life back.

[Sunshinebrew]

Hello Fluffybee

I have MVA and variant angina also diagnosed 2 years ago and also have 3 stents.

I get a heavy chest with tightness and breathlessness and often feel exhausted. However, I also have many good days and have recently been able to enjoy gardening walking my dog and have become more active. I take medications for angina and this does work once you get the right ones. I wish you well in managing this difficult condition.