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Vasospastic Angina

Battle2020 profile image
42 Replies

Hi , I have just been diagnosed with Vasospasmic Angina. Im 58yr old man otherwise healthy and until this day I have a very active life.

I feel I've been to hell and back. I was sent home from the Jubilee Hospital in Glasgow with virtually no info about tbe condition , a prescription of diliazem (200) and GTN spray.

I have obviously researched the net which has provided me with mixed info about my condition hence I now seek to speek with people who suffer from the same condition.

Im not sure my new meds are doing much as I'm constantly suffering smas and the horrendous after effects so it would be great to know what other options are available.

I just really need help with managing this condition with a view to getting my life back .

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Battle2020
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42 Replies
Manhattan1 profile image
Manhattan1

your best person on here for info is Milkfairy ... hope she doesn’t mind me putting her name forward lol

Battle2020 profile image
Battle2020 in reply toManhattan1

Thanks for this

Fluffybee profile image
Fluffybee

Hi,

I’ve had lots of tests with clear coronary arteries, chest, arm and neck pain on exercise and doing nothing.

Breathlessness, I’m trying to get a bit further each day.

It was suspected I had coronary artery spasms and micro vascular dysfunction, I’ve got my cardiologist phone call tomorrow summing everything up but was told previously I had micro vascular dysfunction.

I have GTN spray which helps a lot ‘most’ of the time, and 3 other meds to help.

Do you mind me asking what your symptoms are and what tests were done to diagnose you, 😁

Battle2020 profile image
Battle2020 in reply toFluffybee

Hi, this all happened when I was driving when I experienced what I describe as a shutting down feeling . Very sudden and very violent . Took me to the brink of collapse . After the attack I had a feeling of total exhaustion and felt extremely scared - I actually thought I was dying. I recovered from the first attack and put it down to very stressful workday and lack of nourishment, but it happened again about 4 weeks later . The circumstances were identical , but this time I had several attacks and again the feeling was the same - a sudden overwhelming feeling travelling from chest area all the way up.

Ambulance was called and ended up i Ayr hospital and then the Jubilee. I had one angiogram that spotted a restriction of the main atery on the left side of the heart and I was told that I needed a stent fitted so 2nd angiogram was arranged for the following day. This time the they went into the arteries to take pics begore fitting the stents etc ,but noticed that the arteries were all good and my heart is in good condition too. What they did notice was my arteries were going g into spasm and quickly diagnosed vasospastic Angina hence no stents were fitted or required . I was released tbe following day with meds and brief explanation of my condition - nothing else.

I have been taking diliazem for 6 days , but still experiencing loads of spams - some quite big ones, which scare the life out of me. I now also find that I get a tightness or dull ache in the chest area particularly following a spasm.

I really believe that during a spasm I might not make it . They say stress is a major contributer and I'm the world's worst , but its hard not get stressed and anxious as you sit waiting for the next spasm.

I also have a very bruised artery due to 2 angios . This cause great pain.

I have terrible trouble sleeping too.

I just need help and someone to listen to me so that I can get the orrect help/ advice .

Milkfairy profile image
MilkfairyHeart Star in reply toBattle2020

Hello Battle2020

Welcome to the forum.

I have lived with vasospastic angina for over 8 years.

I know how frightening the pain from a coronary artery vasospasm can be.

I told my Cardiologist it feels like being in labour ( I have 3 children)

My Vasospastic angina was diagnosed during an angiogram using a chemical acetylcholine to provoke my spasms which it did!

I had spasms in my coronary arteries and smaller vessels.

They had to give me morphine for the pain.

After a severe episode of angina I feel as though a horse has kicked me in the chest and my heart feels bruised.

I have problems sleeping too as I get most of my spasms at rest in the night.

The BHF has this information about Vasospastic angina which was written with input by an expert patient by experience and a leading researcher into Microvascular and vasospastic angina Prof Colin Berry who is based at Golden Jubilee in Glasgow.

bhf.org.uk/informationsuppo...

Have you got a follow up appointment?

As it can take time to find the best combination of medication that will help you best. I suggest you keep a diary and try and see if you can spot the triggers of your angina.

Mine are the cold, emotional and mental stress.

Learning to manage your stress is very important.

I have various strategies that help me but talk to your GP or explore some others that you feel may help you.

I practice meditation, self hypnosis, yoga and Tai Chi.

I also use breathing and relaxation techniques.

As with any other long term condition it take time to learn to live your life with vasospastic angina.

There are quite a few of us on the forum living with either Microvascular and or vasospastic angina these are also known as Non obstructive coronary artery disease NOCAD or angina/ Ischaemia non obstructive coronary arteries.

I am sure they will be along soon to share their experiences with you.

Battle2020 profile image
Battle2020 in reply toMilkfairy

Hi Milkfairy , thanks for the speedy response . Only 6 days out of hospital and 6 days on diliazem , perhaps im expecting these tabs to cure me , but I'm not even sure they are doing much or perhaps I'm expecting too much too soon from them. I have haven't got a follow-up yet.

I presume that you can never get rid of the spasms then?

My fear is that I'll have a huge spasm and die . I really struggle with this.

Ive have suffer from stress and anxiety all my.life ,but managed to camouflage it until recently. Its hard not to stress or get anxious when you think that every pain might be your last .

I will certainly seek help for this anxiety and the stress.

I have strted to look for triggers and I too find that the nights are by far the worst .

Thansk again for your response.

Milkfairy profile image
MilkfairyHeart Star in reply toBattle2020

Some people with the right treatment do very well.

The most important thing is that your vasospastic angina has been recognised and you are receiving some treatment.

You didn't have a heart attack.

Diltizem helps stop coronary vasospasms.

With good treatment and taking care of yourself including a heart healthy diet and reducing your stress along with exercise will help.

Perhaps ask your GP to refer you to someone such as a psychologist to help you manage your fear and anxiety.

Please don't feel you are alone there are many of us on the forum who have shared your experiences....were still here alive and kicking 😊

Battle2020 profile image
Battle2020 in reply toMilkfairy

Thank you . Really appreciated

daisypainters profile image
daisypainters in reply toMilkfairy

Hi Milkfairy! Thank you. This is a very helpful post. I have had this test and had the cleanest arteries they have ever seen in a woman who is almost 50 (followed by tons of questions about my diet...) however, my arteries and smaller vessels shut down immediately. You are right - this is the only test that can diagnose this condition. I haven’t had much information since - my first meds helped a bit but didn’t stop the heart episodes and it took 6 months for it to go back for a phone appt with my gp. My new meds work better at rest and normal life - until it gets cold or I walk a bit fast or walk uphill. If you have any good books or resources please send them my way. Two things that have helped lower my blood pressure and keep it close to normal - a total salt audit (even curry powder has salt in it!) and rosemary aromatherapy oil in an oil burner - can lower my body by 10 points in a few minutes. Good after zoom calls. I feel the same as you - but for daytime spasms I feel it in my right elbow then hands or sometimes in my left big toe.. then I know I have gone way too far. Then it feels like a heavy adult is standing on my chest. Then I get really tired for a day or so. Sometimes I will just fall asleep and no one can wake me. My consultant gave me the meds, told me to learn pacing (ie stop if I start to get signals) and good luck - and that there isn’t much info out there. Oh - and to keep my hands and feet warm at all times.

Fluffybee profile image
Fluffybee in reply toBattle2020

I must admit that Milkfairy is certainly the most knowledgeable about this as she’s got both!!!!!

I’m sure she’ll be on here shortly to help. Before then have a look on the BHF website, it talks about it on there, you can also ring and speak to an actual cardiac specialist nurse who are brilliant and very knowledgeable, number on their website if you just put BHF .

Good luck, anytime you want to talk I’m here, I know what you’re going through, so do most of us, you’re definitely not alone, don’t ever feel you are, we’re a good bunch with lots of knowledge and kindness and help and supports, speak soon 😄

Battle2020 profile image
Battle2020 in reply toFluffybee

Thank you for kind words of support. Think I have a bit of a journey ahead of me

Smileyian profile image
Smileyian

Hi Battle2020. I was recently also diagnosed with this condition and angiogram showed minor stenosis in 2 arteries of 48 -50 pct but good blood flow and excellent FFR. Told no stents required below 70pct. I have B.Fumerate and a GTN spray but seldom use due to very short pain episodes. Symptoms vary enormously from person. My sister who is 75 has had Variant Angina since she was 53. Milkfairy is the go to expert on here and can eloquently explain the 3 or 4 types of Angina. It can very often be well controlled but different bodies present differing severity of symptoms.

Battle2020 profile image
Battle2020 in reply toSmileyian

Thanks. Mine was diagnosed during my 2nd angiogram - not sure of the detail tho.

Gizzimos profile image
Gizzimos

HiI have had 4 NSTEMI’s in last 3 years, have been diagnosed with CAS & Vasospastic angina & prinzmetals angina. (Just to day, I am also a senior nurse in the nhs).

I have seriously struggled with treatment over the 2.5 years, many healthcare professionals don’t seem to recognise or treat the condition with the seriousness it deserves. Many HCP’s see the ECG’s as fairly “normal” and no rise in the Troponin blood tests!

I’m under the care of professor Peter Collins at the Royal Bromptom whom since I have been in the care of has been a great advocate and has informed my local medics that this is a serious but treatable condition.

Indifferent... I don’t stress, etc... but I have always done yoga & meditation.

There is an amazing support group on Facebook that I recommend...so knowledgeable and supportive. I highly recommend joining for support.

It’s called” Microvascular Angina, Coronary Artery Spasm(vasospastic), & CMVD Community”.

Milkfairy profile image
MilkfairyHeart Star in reply toGizzimos

There is also a specific Facebook people for people Vasospastic angina

facebook.com/groups/6267594...

Out of interest how was your Vasospastic angina diagnosed?

The Royal Brompton hospital at present does not carry out angiograms with acetylcholine to confirm a diagnosis of vasospastic angina.

The latest guidelines from the European Cardiovascular Society recommends testing during an angiogram for Microvascular dysfunction and vasospastic angina.

eurointervention.pcronline....

Otherwise it is suggested diagnosis and this is perhaps why some healthcare professionals have a problem with understanding Microvascular dysfunction and vasospastic angina.

There is also a guideline in the forum rules that suggests we should not name doctors and their Institutions.

Not everyone may have a positive experience of an individual doctor or hospital.

The BHF and Medical Research Council have also funded the PRIZE study into a possible treatment fir Microvascular angina. Unfortunately any of us living with Vasospastic angina are excluded.

The centres with an interest and expertise in caring for patients with Microvascular and vasospastic angina are listed.

clinicaltrials.gov/ct2/show...

The Royal Brompton is not taking part in this study.

Battle2020 profile image
Battle2020 in reply toMilkfairy

It was diagnosed during my second angiogram but had been picked up on a couple of ECG' s that something wasn't quite right. Seems like I'm just at the start of a very long journey. I just don't want to feel that im about to die everything I have a spasm

Gizzimos profile image
Gizzimos in reply toMilkfairy

HiMine was seen on 2 angiograms with a cardiac interventionalist

Sorry I’ll try to edit the hosp & names

Milkfairy profile image
MilkfairyHeart Star in reply toGizzimos

@Gizzimos

You might like to have a look at lettingoffsteam's very helpful post about Prof Angela Maas ' book. Prof Maas is leading expert in women's heart health and non obstructive coronary artery disease.

healthunlocked.com/bhf/post....

I suggest you discuss with your Cardiologist about the evidence that women are more likely to die from Cardiovascular disease rather than breast cancer.

You may be surprised by their response.

Grandma63 profile image
Grandma63

Your anxiety is understandable. I went through something similar myself. It is an awful lot to deal with especially when most family and friends have no clue what you’re talking about. My advice would be to ask to be referred to an occupational therapist. I was lucky enough to be referred to one locally who helped me enormously when I was going through a bad time with my angina/spasms. The other thing is, most people seem to have periods when the spasms are bad but then for no apparent reason they ease off, sometimes for months and months. This can be a difficult condition to live with but you will learn what is best for you. Good Luck and believe me I know how hard this might be for you at the moment, try not to worry. 😊

Battle2020 profile image
Battle2020 in reply toGrandma63

Thank you. It is very hard and I am struggling

Fluffybee profile image
Fluffybee in reply toBattle2020

You are not alone Battle2020 there’s several people on here who are very knowledgeable on this subject and have either one or both conditions.

There’s always someone on here to listen to you and be there for you anytime.!!

Thinking of you and all you've been through ,has you can see everyone on this site is extremely supportive and encouraging,with a great wealth of experience..and knowledge......,.they have been of great help to me .....you are certainly not alone and follow up post hospital visit s can be poor at times.........if you feel the problem is more the angina attacks are not well controlled? That this is what is concerning you the most.......then have plan of action.....,.speak with g.p......,ask if there is more or better way of optimal drug combinations that could improve or prophylactically stop the vasospastic angina that best fits you.You will no doubt be better under a consultant who like Milkfairy suggested who has not only knowledge but an understanding,so you get the best care.

This condition is not widely understood by many so it is good you have a diagnosis.......be confident in that.,...to start........talk to go about management and keeping a diary of triggers has mentioned can help them and you to identify them. You can take to g.p and consultant ,

All I can say is it is not easy ajusting to a new reality of any chronic condition but you will find over time that you will.........talking here is a very excellent start in that process, educating yourself and those around you,and find knowledgeable and understanding consultant and getting g.p working together .....,...I am sure you will eventually find a combination of therapeutic medication and lifestyle accomplishments......,.. ways to relax ....I like yoga meditation ....knitting reading painting swimming! Taking time to yourself out of a busy life or any stressful life events..,......such has just having this diagnosis and still being symptomatic! .......or just sitting by a warm fire with favourite tea! .But information is your best armary against anxiety you will see.

Good luck and the very best wishes, just start with getting condition well managed, make plan for that with your doctor's and bhf has a very good helpline for chat for advice.......,..you will get there and the anxiety will be less and keep talking and let us know how you get on .......this anxiety is only natural ..........but in time I have no doubts you will learn to live with or manage this too...........just give yourself time understanding and try something you enjoy to aid relaxation........and take yourself out of your situation for a while as it is alot to cope with and adjust to ...............it can be anything mine is swimming yoga meditation knitting painting list goes on!

Keep with this amazing bunch of people on this site and the bhf who pointed me in their direction and you'll find a way to not only manage your condition ,which may need changing over time or monitoring ,with knowleldgeable consultant but you'll be confident in your understanding of what is happening and feel you are more in control .........this is something you ll learn over time I have no doubt ☺️

Wishing you all the very best wishes

Battle2020 profile image
Battle2020 in reply toWildswimmingLady1

Thank you. Everyone on here has been very supportive and offering lots of good advice .If I could get the symptoms to ease then I might find it better to cope.

Just complicate things my radial artery was badly bruised during my angiograms which is causing me horrendous pain and limits the use of my right hand .Struggling with this too.

Goosh , bless you, sounds like a really tough time! I'm very sorry to hear about that........I am sure you are apsolutely right about getting better management is the key.......... Dealing with complications of your investigations ,......seems so unfair on top of diagnosis.

I'm really rooting for you........ sending all good wishes take it easy.......and don't forget to ask those around you to help n be supportive....... people family friends usually like to be useful ......I know asking is probably the last thing you want to do.........but sometimes it's good for all of us! Those asking and those helping!-)

All the best wishes

Battle2020 profile image
Battle2020 in reply toWildswimmingLady1

Thank you so much . You are all very kind

Milkfairy profile image
MilkfairyHeart Star

I feel we need a group hug and session on the yoga mat!

I am a big fan of yoga too in particular yoga nidra total body relaxation and alternate nostril breathing for the really painful episodes of spasms.

🤗🧘‍♀️🧘‍♂️

WildswimmingLady1 profile image
WildswimmingLady1 in reply toMilkfairy

That sounds great count me in! -)

Cheekyvimto124 profile image
Cheekyvimto124

I have that condition and take a long acting nitro called Isosorbide mononitrate and a calcium channel blocker called Amlodopine, , was previously on a beta blocker but this was stopped as can make the condition worse

Battle2020 profile image
Battle2020 in reply toCheekyvimto124

Im currently on Diltiazm - only been on it a week tho. Hope you're doing ok

Fluffybee profile image
Fluffybee in reply toCheekyvimto124

Hi Cheekyvimto124

I’m on the same meds as you for the same... isosorbide mono nitrate, Amlodipine, but on top the GTN spray, told to keep taking Bisoprolol and Atorvastatin.

I questioned the Bisoprolol at my recent phone consult but said to stay on it !!!!!!! Not sure what to do as by what I’ve read Bisoprolol doesn’t help at all with micro vascular angina, but he said he doesn’t know much about it at all and now being referred to a specialist somewhere in the country.

Hope you’re doing well on your meds?

What symptoms do you have with your micro vascular angina or coronary artery spasms? Thanks 😊

Milkfairy profile image
MilkfairyHeart Star in reply toFluffybee

Fluffybee Beta blockers are contraindicated for those living with vasospastic angina.

Beta blockers can help with those living with Microvascular angina caused by Microvascular dysfunction.

I hope you get to be seen by a specialist soon.

Fluffybee profile image
Fluffybee in reply toMilkfairy

Thank you, yes that’s what I’ve been concerned about as I’ve seen by your posts that it doesn’t help but the consultant insists I keep taking it, so a specialist cannot come soon enough.

I was going to ask to, not sure if I have before if not I apologise, but with this/these conditions can you get that heavy chest feeling and a slight ache in between the main spasms as I do and not sure it’s related, I know you cannot say as we cannot say for definite but just have you heard of,or get yourself those symptoms, I didn’t get the chance to sit down much yesterday and didn’t feel to good at the time but silly me kept going, and think I’m paying for it now.

Just your thoughts on it if you don’t mind. Or anyone else with the same condition. 😊

Milkfairy profile image
MilkfairyHeart Star in reply toFluffybee

Hi Fluffybee

I feel as though I have been kicked by a horse in my chest with a heavy painful bruised ache in my heart after a really bad episode of vasospasms.

It's like a permanent imprint of pain.

I would describe my vasospasms like being in labour.

We are all different and from the many other people I have had contact with Microvascular and vasospastic angina I have seen that the angina symptoms can be very similar.

Basically you cannot diagnose Microvascular or vasospastic angina from a person's symptoms alone.

Fluffybee profile image
Fluffybee in reply toMilkfairy

Thank you, I’ve found if I’ve had a particular day when I’ve been doing a lot more than usual and used my GTN spray several times, that day I feel pretty awful but the heavy ache the next day I’m assuming must be because of how I was the day before. But like you say people with these conditions are different. Wiped out today, so feet up and doing..... well not much at all .... lovely 😄

Battle2020 profile image
Battle2020 in reply toFluffybee

Hi , if it helps, I sometimes get dull ache almost like a cramp after bigger spasms. They can be long lasting or short lived- either way they are very uncomfortable and worrying. I have described them like ' being hit by a train". Because its early days for me , I have been taking it easy and taking my time to increase daily activity - seems to help. I have also been out walking my wee dog and building up the the distance every day or so.

Hope this helps you a little .

Battle2020 profile image
Battle2020

I meant to also say that I feel quite exhausted after a bad day if spasms - i think it takes it out of me

Fluffybee profile image
Fluffybee in reply toBattle2020

Definitely takes it out of me, my chest pain isn’t as strong as yours seem to be, more of an ache and something heavy sitting on my chest and pain going down my arms and sometimes my shoulders.

At the time of doing more than usual and the next day but more of a heavy ache the next day.

So pleased I’m seeing an expert but it’s going to be quite some time I imagine with most of us in tier 4 !!!!

Battle2020 profile image
Battle2020

I get the pains you describe too - they vary and Im not sure why. Hope u get seen soon . Just make a nuisance of yourself if you feel your being left too long . It sometimes works :-)

Chiahuahualady profile image
Chiahuahualady

Hi Bartle2020I can totally relate to your anxiety and finding it difficult to cope with .

Like you almost 2 weeks ago I had a severe pain in left arm which woke me and chest pains, i thought i was going to die . I went to A&E and diagnosed with unstable angina and given meds and gtn spray . I've had 2 further attacks i had an angiogram where artery went into spasm and couldn't continue. I've been referred fo a ct artery scan . Consultant thinks it may be vasospastic angina but unsure til investigations are done .

I am a fit ,active 59 year old ,never been I'll in my life ,I feel tired ,lack energy ,feel my mood getting down, due to not being active ,frightened for when next pain may come .

I don't want to worry my family so I try to hide pain.

Like everyone has said ,try to find ways to cope ,yoga meditation , I've found this site so helpful and so supportive in such a short space of time .

I hope you get the help you need ,in some ways its reassuring that other people have experienced similar things and can relate to what you're going through.

Take care and be kind to yourself

Battle2020 profile image
Battle2020

Hi, I had two angiograms, during the first angiogram they told me that I needed a stent or two so preped me for this the following day. During the procedure they told me that my arteries and heart were in good condition and that I was suffering for artery spasms so no stents fitted. That was it , I was discharged the next day with diltiazem tablets and virtually no info about the condition and how to treat . My GP has been okay but has very limited knowledge of the condition. Im really on my own and because of covid ( which i also picked up in hospital) there is no follow-up at all. My meds help,but I still get loads of little spams that I just put up with and have stopped telling my wife when I have them . Like you they worry me and my biggest dilemma is what I can take meds wise without compromising the diltiazem.I am 58 and like you I was very active and lead a pretty healthy lifestyle so no idea why this has happened other that many years of stress and anxiety- mostly workplace . I have since left work before that killed me .

Im now not working and life has ground to halt . Feel let down do t know what the future holds for me . Trying hard not to get depressed, but it is a bit of a struggle .

I wish you all the best for the future and hope that you can get back on track very soon .

Take care .

Milkfairy profile image
MilkfairyHeart Star in reply toBattle2020

Please don't feel there is no hope.

It takes time to learn to live as well as you can with vasospastic angina.

Be patient and kind to yourself.

Battle2020 profile image
Battle2020

Thanks, I am trying and very much appreciate your kind words and support

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