Hi im new on here and would love some help.and support

[Prettywoman29]

I have recently been diagnosed with microvascular and vasospastic angina and moderate blockage to LHA

[Milkfairy Heart Star]

Hello,

Welcome to the forum.

I have lived with vasospastic angina for many years.

Vasospastic angina is a rarer type of angina and still not well understood or recognised by Cardiologists and other healthcare professionals.

I was admitted to hospital in 2012 with a suspected heart attack, however I was incorrectly told I couldn't have angina or a heart attack because my coronary arteries were unobstructed.

My vasospastic angina was later confirmed by a functional angiogram using acetylcholine which confirmed I have coronary vasospasms in my microvessels and coronary arteries.

I have also seen a growing awareness of vasospastic angina amongst healthcare professionals in recent years.

How has your microvascular and vasospastic angina been diagnosed?

It can help to keep a diary to see if you can identify any possible triggers of your angina.

Common triggers are the cold, emotional, mental and physical stress.

My vasospasms will also be triggered by drops in air pressure, caffeine, artificial sweetners, adrenaline and beta blockers.

I pace my activities and manage my stress. I practice Mindfulness meditation, yoga , Tai Chi and breathing and relaxation techniques.

I walk my dog everyday.

I also attended a Pain Management Programme which helped me respond to my pain differently.

It can be process of trial and error to find the best combination of medication that will work best for you as an individual.

The mainstay of treatment offered is calcium channel blockers, long acting nitrates like isosorbide mononitrate and nicorandil.

I am also prescribed clopidogrel for life and a statin.

Beta blockers are not usually recommended as they can make your vasospasms worse.

The BHF has this information about microvascular and vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

The BHF information includes the links to this Facebook support group

facebook.com/groups/6267594...

This website has some further information including coping strategies which may be helpful

internationalheartspasmsall...

My Cardiologist uploaded this recent article onto my careplan and electronic patient records system.

During my last admission many of the staff found it helpful to explain vasospastic angina. An expert patient co authored the article.

journals.sagepub.com/doi/10...

There are quite a few of us on the forum who live with microvascular or/ and vasospastic angina. Hopefully they will be along to share their experiences with you too.

[Prettywoman29 in reply to Milkfairy]

Hi thank you so much for your reply. As like you I had been admitted into hospital a number of times and even though my ecg were not normal and there was an st depression seen, after it settled down I was sent home. I was told that I had a floppy sphincter and that it was silent acid reflux. After a number of admissions I had a great a&e cardiologist who was there and said he wanted to preform the ACH angiography test. After having the test it was confirmed that I have vasospastic angina and microvascular spasms and furring in my left coronary artery. I also have reynaulds and am getting tested for sleep apnea. I am now on medication which have helped with the spasms but not the symptoms. I have found this completely life changing and debilitating. My life has completely changed as I have. The pains everyday and the fatigue are awful. The medication I am on is,Aspirin

Famotidine

Tildiem retard

Ezetimibe

Rosuvastatin

Isosorbide mononitrate

Gtn spray

[Milkfairy Heart Star in reply to Prettywoman29]

I also have Raynauds Phenomenon and migraines both associated with coronary vasospasms.

When I was first diagnosed it was very rare to have an angiogram with acetylcholine, so it's heartening to hear more people are being offered this specialised angiogram.

Where are you based in the UK?

There was very little information about microvascular or vasospastic angina when I was first diagnosed.

I still encounter Cardiologists and other staff who know little about the condition.

I have ECG changes too, ST elevations, depressions and T wave inversions all brushed off as artifacts!

I have a wonderful Cardiologist, I have an admission plan as unfortunately I don't respond well to my medication and end up needing to be admitted.

At first it is bewildering being confronted with this unpredictable condition. I felt my world had been turned upside down too. I was also struggling as I kept being told ' it's not your heart!'

I coped better once I knew why I was having my symptoms.

I am glad you had the good fortune to meet a knowledgeable Cardiologist. It sounds as though they are on the ball.

It took me a while to find mine!

I am on very high doses of Diltiazem, Isosorbide mononitrate and nicorandil.

I am also on Rosuvastatin and clopidogrel. My cholesterol levels treated aggressively to help prevent developing obstructive disease.

I use GTN patches as the GTN spray works, but I then get worse rebound coronary vasospasms.

I also use oxygen at night. I have just been started on Ivabradine to slow my heartrate.

Beta blockers are a no no for us as patients.

Then there's the Lansoprazole!

Have you been offered cardiac rehab or any input from a Clinical Psychologist to help?

Dealing with the psychological impact of frequent pain and the unbelievable tiredness is probably the toughest part of this condition for me.

I sometimes will just hit a break wall of fatigue and need to rest in the afternoons.

Learning to manage your stress and anxiety is important as well.

Hopefully with time you can work with your Cardiologist to find the best combination of medication that works best for you.

It is possible to live well with vasospastic angina, however it can take time to find your way in your new life.

This is a small study about patients experience of living with microvascular and vasospastic angina.

openheart.bmj.com/content/1...

[Prettywoman29]

Thank you so much for replying. It has really helped me. It is hard as you definitely do not get the help or support you need. I have been trying to cope with most symptoms as home as I always feel like I'm pestering the gp's and they don't really understand.

[Prettywoman29]

Sorry to bombard you but do you have a problem drinking water? I try to be healthy and eat well and drink water but I find that drinking water is a struggle and it seems to make me feel quite faint and I get the feeling of drowning. I also feel that I am retaining fluid in the upper part of my legs but not in the lower parts or my ankles which is the usual place. Have you or do you have any of those symptoms?

[Milkfairy Heart Star in reply to Prettywoman29]

I don't have any issues drinking water or any of the other symptoms you describe. The only time I have swollen ankles is in very hot weather or after I have been on a plane.

[AuntyEdna in reply to Prettywoman29]

Hi I have Microvascular Angina and mitral valve regurgitation migraines and other issues.

I can’t add anything more to what Milkfairy has said - she is the oracle on such matters - we are very lucky to have her there for help and advice.

However I do relate to your drinking water conundrum. I feel when I swallow very cold water everything goes into spasm and forgets what it has to do. The problem is solved for me by drinking room temperature water or cooled boiled water or alternating warm boiled water with a cup of tea.

I take my own water everywhere with me because buying water in bottles can be impossible they are always stored in the cold cabinet. Freezing cold water will also set my migraines off.

Not sure if that helps ?

Take care 😊

[Prettywoman29]

Thank you so much for getting back to me. I am glad that I am not alone. I also take my water everywhere with me and like you can only drink room tempreature water.

[Prettywoman29]

Has anyone had a rash appear? I have recently over the last few weeks have a rash appear and it has gradually got a bit bigger. They are not the typical red pin prick rash. I went to the gp and they gave me antihistamine tablets but that did nothing so I am now on a strong steroid cream. I have never had this before and just wondered if anyone else has or has had this before??

[Milkfairy Heart Star in reply to Prettywoman29]

Are you taking a calcium channel blocker? They can cause a skin rash.

[Prettywoman29]

Only the medication I listed???

[Milkfairy Heart Star]

Diltiazem, Verapamil and Amlodipine are the usual calcium channel blockers prescribed to treat coronary vasospasms.

[Prettywoman29]

They tried diltiazem but I could not get on with it.

[Prettywoman29]

They put me on tildiem retard which is a form of calcium channel blocker?Thank you so much for you help you really are knowledgable

[Milkfairy Heart Star in reply to Prettywoman29]

Tildiem retard is a type of diltiazem, a calcium channel blocker.

I have through necessity become an expert over the years, as so little information was available when I was first diagnosed.