Vasopastic Angina

[Sprit]

Hi

I was recently diagnosed with vasopastic angina. Ism really terrified as I have not been offered good medical support and follow up . Please can some with same condition contact me. Very grateful

[Manhattan1]

your best person for info is Milkfairy

[Sunnie2day]

Milkfairy really is your 'go-to' here on the forum for vasospastic angina and she'll likely be along soon to give you some excellent tips and links to more information.

Meanwhile, consider contacting the BHF Heart Helpline nurses. The following link is to their info page with all their current contact details including opening hours on the phone line:

bhf.org.uk/informationsuppo...

[Sprit in reply to Sunnie2day]

Thanks

[Milkfairy Heart Star]

Hello Sprit

Welcome to the forum.

I have lived with Vasospastic angina for 8 years.

I am fortunate that I have access to some Cardiologists experienced in caring for patients with Microvascular and vasospastic angina.

These conditions are known as Ischemia non obstructive coronary arteries (INOCA)

How has your Vasospastic angina been diagnosed?

Can I ask why you feel you are not getting good support?

It is a less common type of angina and many Cardiologists are not experienced in caring for patients with this condition. Sometimes it is necessary to seek a second opinion from a specialist into Microvascular and vasospastic angina.

The BHF has some information about Vasospastic angina.

bhf.org.uk/informationsuppo...

There are a few of us about on the forum who live with either Microvascular and or Vasospastic angina. I am sure they will be along too to share their experiences with you too.

[Sprit in reply to Milkfairy]

Thank you. Do You take take GTN regularly?

I have had angiogram, echo cardio gram and Thorasic CT scan .

I am on Isosobride mononitrate, aspirin and Bidoporol. I also take Ramapril for hypertension. Waiting for 24 hour ECG.

I need practical advice how to lead a normal life with this condition .

Take care and stay safe

[Milkfairy Heart Star in reply to Sprit]

Hi Sprit

I acknowledge just how bewildering and lonely you can feel at first. Unfortunately there are too few Cardiologists or GPs who have the knowledge to recognise and treat Microvascular and vasospastic angina appropriately.

Has your Cardioligist explained why you have been prescribed a beta blocker?

They are not usually recommended if you have vasospastic angina and NICE (National Institute of Clinical Excellence) in their guidelines say they are contraindicated .

Though they are helpful for patients with microvascular angina.

bnf.nice.org.uk/treatment-s...

The usual treatment for Vasospastic angina which is also known as Prinzmetal/ variant angina or Coronary artery spasm is with Calcium Channel blockers such as Diltiziem or Amlopdine followed by isosorbide mononitrate extended release tablets and niconrandil. Also GTN sublingual spray.

I suggest you discuss this with your Cardiologist if you do not have a Cardiologist ask your GP to refer to Cardiologist who has some understanding of both microvascular and Vasospastic angina.

Microvascular and vasospastic are complex conditions and it can take sometime to find the best combination of medication to help treat your symptoms best.

There has been some recent research which you might find helpful which you can share with your GP and Cardiologist.

eurointervention.pcronline....

I suggest you keep a diary of your symptoms.

See if you can spot any trends or triggers.

Mine are the cold, emotional and physical stress.

Exercise, diet and all the usual lifestyle changes as recommended by the BHF for all heart patients is important.

Learning to manage your stress and anxiety is vital.

I attended a pain management programme and see a pain psychologist.

I use various strategies such as Cognitive behavioural therapy, mindfulness meditation, breathing and relaxation techniques.

I attend Tai Chi and yoga classes.

Where in the UK are you based?

Please don't feel you are alone there several forum members here who live with Microvascular and vasospastic angina. We all find a way of living with this condition....honest😊

[Sprit in reply to Milkfairy]

Thank you for getting back to me.

I just finished the 24 hour ECG. I tend to have left shoulder , shoulder blade pain with left arm n pins and needles.

Should I take the GTN or pain killer.

I got a letter from the Hospital cardiac nurse two days ago asking the GP to increase my Bidiporol to 2.5

I told my GP that it was contraindicated. She was surprised. She advised to stay on 1.25 and that she correspond with the cardiologist.

I continue have pounding heart beat in the night in my throat and left ear.

I have an appointment now to see a cardiologist on 8/10/30. Long wait.

I am totally confused and scared.

I live in Sidcup Kent. Does your cardiologist do private practice.

I need to see a cardiologist who knows about Vaso plastic angina.

Talk tome when you have the time

Thank you for your support it has been very valuable.

Take care and stay safe

[Milkfairy Heart Star in reply to Sprit]

If you have GTN spray use it to help with your pain.

If your pain doesn't improve you need to go to A&E.

Take a printout of the BHF information I sent you. I would also send the link to your GP too.

Vasospastic angina is poorly understood and recognised. I have a written Admi mission protocol to help the staff to look after me

It is unfortunate that your GP and the Cardiac nurse are both unaware that beta blockers should not be given to patients with Vasospastic angina.

My Cardiologist doesn't do private practice he gives his time to research however I will message you with some suggestions.

I have lived with vasospastic angina for 8 years and it took a while to get my diagnosis confirmed by appropriate testing.

Hang on in there , be strong and be prepared to advocate for yourself.

[Fluffybee]

Hi sprit,

Welcome

I’ve been told I have vasospastic angina and micro vascular angina.

I’m now waiting for a stress MRI to see what’s going on.

My consultant isn’t to bad on knowledge of the condition but his department doesn’t know a thing about it sadly, the registrar ( who literally just took notes then reported back to my consultant) wrote to my GP after my last telephone consultation basically saying I’m at no serious risk with the vasospastic angina so my Gp has followed that advice and doesn’t see the diagnosis as a problem.

I had an abnormal ECG, my ultrasound showed blood not getting through to my heart well and I’ve got completely clear coronary arteries.

Great you’ve come on here, there’s not too many people on here with this condition, but we’re all here for each other, no matter what we’ve got.

Chat anytime 😀

[Sprit in reply to Fluffybee]

Thank you fluffy bee. I feel the same. I have seen three ? Cardiologists . Similar experience. GP just follow hospital recommendations and does not take my emotional stress caused by this seriously .

I feel all alone. Are working with this condition?

Take care .

[Sunnie2day in reply to Sprit]

Don't feel alone, Sprit, you're not, I promise you're not.

[Fluffybee in reply to Sprit]

You’re most definitely not alone 🤗🤗

There’s several lovely people on here with the same condition, they’ll chat to you anytime, everyone is so friendly and helpful on here, I honestly don’t know what I’d have done without them.

I felt very alone and a bit scared

Confused, etc, I spoke to the nurses at BHF, it was a nurse that mentioned about this forum and I’ve not felt lonely since, and feel when I’m worried or upset or even happy and want to share a positive thing that’s happened, someone’s here for me, just so grateful for this.

I do work but have had to cut my hours down drastically as I just cannot do it, I’m exhausted, pain and bring breathless gave me no choice, so lots have changed because of this.

Do you work ?

Just to say again, you’re not alone now 😃

[Healthyheart1]

Hi Sprit, I've got vasospastic angina, it took 18 to 24months of taking, tweaking and changing my meds for me to feel somewhat "normal ". I still get days when I think my god what have I done differently that I should be in so much pain. I had a flare up about 6 weeks ago where I got very breathless and was really struggling, I got a telephone consultation with my doctor, he changed two of my tablets and because there was no change with one of them he changed it back. He said he didn't feel the need to refer me back to the cardiologist. It took 3-4 weeks for me to feel somewhat normal again.

I had covid at the beginning of lockdown but couldn't have a test then, when my angina flared up again I think it was a flare up from the covid. I managed to get a test for antibodies after that time, the results were i had had covid and I had antibodies at the time. The weather has a definite change on my vasospastic angina, it doesn't like hot weather it doesn't like cold weather and any small variation in between. I have not been able to walk far or as fast and exercise makes it worse. I did a spell of pilates before lockdown that I really enjoyed and because of other health problems I have been able to return to having bowen which is an alternative treatment on my body and relaxation as well. I pay for this treatment.

I really hope you get some answers, keep pushing for yourself. Read the information that Milkfairy has sent links to. Please keep us updated with your journey and keep well. Regards Sheena x

[Sprit in reply to Healthyheart1]

Thank you Sheena for sharing your experience. Very helpful. Did you carry on working ? How often do you take GTN ?

Please keep in touch.

Regards

Spirit

[Healthyheart1]

Hi, I was off for 2 weeks with covid, it took me weeks to feel that I had any energy.

I'm still not back to anything like I was before angina. It will have been 3 years in October that it was diagnosed. Had to learn its a different way I have to approach everything I do.

The gtn i don't need as much now, i have learnt my triggers but as soon as the weather turns for autumn I will be using it more. I hope that helps you. Please ask again if I'm not being clear. I did work through this, i work 2 5 hour shifts, I can't manage any more because of other health problems. X Sheena x

[Healthyheart1]

That should be two 5 hour shifts xx

[Moonstone9]

I have microvascular and vasospasm too it was diagnosed years ago and then I had another angiogram recently because it got so much worse.

It's difficult because cardiologists in my area do not understand it and it's difficult to travel to London to see my previous doctor due to the pandemic.

I find exercise my biggest trigger and try to know my limits. But it's tricky like today there were no buses so I walked about a mile and a half and ended up with horrendous angina. And then it often lasts the next day or two as well and can barely make it out to the letter box. So I am basically learning I cannot excercise at all. It's hard because I am like Jack Russel chasing a blowing leaf or a squirrel or something I just want to go and then end up unwell again.

And I guess keep trying the medication. I can't take amlodipine or diltaizem so am trying nicorandil now. Plus gtn and patcheswhat are you taking?.

[Sprit]

Hi Moonstone thank you for getting back to me.

Are feeling better now.

I am on Isosobride long release, GTN spray

Bisoprolol. I also take Ramapril for high blood pressure.

I too have good days an bad days. I haven’t worked out what the trigger is.

I feel quite disabled as I have lost my independence. I am still ofF sick.

Can’t see the light at the end of the tunnel.

My first cardiologist appointment is not until 8/10/20.

Are You working?

Take care