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 in reply to Milkfairy]

Hi I have just seen my cardiologist this evening and he has taken me off aspirin and put me on clopidogrel instead. The reason for this is, that he says something else is going on in my body and I have some gastro issues so it's kinder to the body. Have you had any bad experiences with clopidogrel???

[Milkfairy Heart Star in reply to Prettywoman29]

I have been taking clopidogrel for over 10 years.I have some spectacular bruises from time to time and I bleed for longer when I cut myself.

I was prescribed Lansoprazole a couple of years ago which helped with my gastric issues.

If you are still having periods it can make your periods heavier.

Did you see my post about the ANOCA patient survey being carried out?

healthunlocked.com/bhf/post....

[Prettywoman29 in reply to Milkfairy]

Thank you so much for your reply. That does make me feel a bit better about changing to clopidogrel. I was thinking about what my cardiologist was saying and I did some research. Have you heard, or know anything about Kounis Syndrome?Oh i didn't see your post about the survey but I'm more than happy to have a look at it, anything that helps is fantastic.

I do have moderate long segment stenosis in RCA so could I still do the survey???

[Milkfairy Heart Star in reply to Prettywoman29]

Kounis syndrome is a rare cause of coronary vasospasms. It's an extreme allergic reaction some people have to certain substances eg aspirin and antibiotics.

I have always been prescribed clopidogrel rather than aspirin for this reason.

Thanks for looking at the survey.

It's okay for you to take the survey, as some people have both obstructive and non obstructive coronary artery disease.

[Prettywoman29 in reply to Milkfairy]

Thank you so much for replying. So am I understanding right that if you have kounis syndrome and it was controlled that coronary vasospasm would go? Sorry to bombard you but you really are knowledgeable?

[Milkfairy Heart Star in reply to Prettywoman29]

I am afraid I can't give you an answer to your question.

I am aware of individuals with Kounis syndrome who just have a one off episode of coronary vasospasms, while others have ongoing coronary vasospasms. Some people also have mast cell activation syndrome.

If you are on Facebook, it might be worth joining this group. It has nearly 5,000 worldwide members some of whom have Kounis syndrome or mast cell activation syndrome.

facebook.com/groups/6267594...

[Prettywoman29 in reply to Milkfairy]

Thank you for that, i have never heard of mast cell activation syndrome?Also I am now taking my isosorbide monitrate at 4pm instead of the morning now to see if it helps with the pains at night? When do you take yours?

[Milkfairy Heart Star in reply to Prettywoman29]

I take 60mgs isosorbide mononitrate at 6pm and 11pm.20 mgs nitrate patches at 6pm.

Diltiazem 360mgs, Nicorandil 30mgs at 8am and 8pm.

Lansoprazole at 8am.

Rosuvastatin 10mgs, Clopidogrel and Ivabradine 2.5mgs at 11pm.

Oxygen overnight.

Vasospastic angina can be challenging to treat and live with.

Some people do well once they find the best combination of medication for them.

Others continue to have chestpain.

How are you getting on with managing your triggers?

Mine are the cold, drop in air pressure during storms, mental, emotional and physical stress.

[Prettywoman29 in reply to Milkfairy]

Wow you are on a cocktail of medication. I'm not sure if i have had side affects from the isosorbide mononitrate. I was previously on 120mg then was reduced to 60mg when they added the Amlodipine. Now I have gone back up to 120mg and instead of taking them at 11.30am I'm now taking them at 4pm. Yesterday was my first day of change and I felt lightheaded, sick and faint and my blood pressure went down to 81/50 then 120/73 quickly. It eventually subsided then tonight at about the same time I had the same feelings but I had bad pain in my chest and in the top of my back. It was awful. That too eventually subsided but both times it was a horrible experience. I was on 120mg before and did not have issues like this?? I am going to carry on with it and hope it improves. I am now off aspirin and waiting for my new prescription so I can start my new medication. Did you have any of these issues??

[Milkfairy Heart Star in reply to Prettywoman29]

I split my 120mgs of Isosorbide mononitrate into two doses.60mgs at 6pm and 11pm.

I also don't take my Diltiazem at the sametime as my isosorbide mononitrate. I take my Diltiazem at 8am and 8pm.

This way I avoid a big drop in my blood pressure.

[Prettywoman29 in reply to Milkfairy]

Thank you for your reply. I wanted to split the dose of my isosorbide mononitrate but my cardiologist said there had to be a 12 hour gap between as you can become immune to it?I definitely feel it's better taking it at 4pm but the side affects at the moment are pretty awful but I'm hoping they will subside soon.

My triggers are cold, heat, stress and sometimes I have no idea why.

[Milkfairy Heart Star in reply to Prettywoman29]

The evidence is to have an interval of about 8 hours free from nitrates to help prevent building up a tolerance to nitrates

I take my last dose of Isosorbide mononitrate at 11pm, next 6pm the following day.

I put 20mg patches on at 6pm, remove them at 8am the following morning.

My sense is that those of us with vasospastic angina don't seem to build up a tolerance of nitrates.

I reprogramme my system by reducing my ISMN in the summer when I am less symptomatic. At least to 30mgs ISMN once a day and no patches.

I then gradually build up to winter doses.

[Prettywoman29 in reply to Milkfairy]

That makes so much sense to me. I am just waiting for blood works to come back now

[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.

[Andy5S]

hi , I also have vasospasm angina which has been rugged last couple years. Been playing with medications entire time trying to find what works. I have settled from the more severe but still feel daily tightness and discomfort where I can go about 3 days without needing to take nitro. I take lots of other common meds for this condition.

Something I learned is that there is an emotional/psychological component to this condition that also can really wear on you sometimes. I suspect any chronic condition where you frequently feel pain will cause this. It’s important to have support and sometimes additional medication is needed for anxiety. Everyone is different but this can be tough at times to cope.

I am curious, in your case, would you say symptoms are daily? (Like intermittent throughout the day) and what severity is your chest pain?

Andy

[Prettywoman29]

Hi Andy5S, Milkfairy is much better to help you with advice and info as she is so knowledgeable, but I thought I would reply with my experiences.I was only diagnosed a little over a year ago so I am very much at the point where my cardiologist is still trying to find the right medications that work for me. I have had quite a few A&E admissions and constantly feel a pressure in my chest. The evenings are the worst, with palpitations, heart racing, chest pain and my blood pressure goes low, 81/50 and then high quickly which makes me feel rough. It's been very debilitating. I absolutely dread the night times. I have a few things going on so I totally understand it's hard to get the medication right and not every gp or consultant are as compassionate or understanding. I do fear that this is going to be a very long road 😔