Just need to talk to someone that might understand. Sorry about the long story

[LSCE]

Hello, first time posting but read everyday since registering after my first heart attack Nov 2020. I'm 58 and to date have had 2 documented heart attacks (probably more like 3 -4). No significant obstruction found on the 2 angiograms I've had, normal Echo and MRI after my first HA. Normal 7 day ECG X 2. Put on the usual post MI meds other then beta blocker after first HA but the severe chest pain kept happening every day early morning. 4 days later after 4 episode in 24 hours I went to A&E, despite raised Trop' no further investigations and discharged on Isosorbide Mononitrate 60mg. This stopped the pain for 4 months, then severe angina started up again, relieved with GTN so soldiered on . Until 1 major episode, diagnosed with minor HA again clear angio'. Suspected vasospasm, started Nifedipine and this helped but haven't really had a day when not felt something's wrong. Get mild angina and quite aggressive intermittent sort of chest pain / tightening sometimes flutters. Varies day to day. Major angina attack Dec with breathless, sweating, parlor didn't call 999 as settled about 7 mins and after GTN x 2. Didn't 999 as the review with reg' 4 days prior felt like I was being told off because I keep explaining symptoms and was hoping to ask for further investigation, microvascular mentioned but told this is not life threatening, as things are stable, it's a case of managing with meds and I'm on the right treatment, increase Nifedipine. Don't know why I'm writing this on here I just feel the medics don't understand. I know I've got to learn to live with this but no one tells you what to expect . I'd like to feel okay at least for a day. I've done all the things I can re: lifestyle change, diet, weight loss, exercise, reduced working hours. Sorry to go on but I feel better for having posted.

[Hidden]

Dear LSCE

A big welcome to the forum and to the help it has on offer for you.

Well no one could read your post without understanding that you have had a right old time of it all, and no wonder have ended up with the worries that you are suffering with.

And no one could blame you , for those worries , as you don’t seem to be getting the answers that you need.

I’m sorry to tell you that those answers can only come from your Dr or heart team as most on here are not medically trained.

But having said that a few have the ailments that you have and maybe are able to help you with more with information.

I really feel for you as you seem to be trying so hard to change a few things in your lifestyle to help your illness.

I’m glad that you feel a little better by writing your post, we are always here to read them and help when we can.

Push harder for your answers, that is a horrible feeling to think that you are being told off when all your doing is trying to explain yourself.

The medical profession can be blunt { like the rest of us } sometimes, try not to take it personally.

Good luck with everything, you are in my thoughts.

[LSCE in reply to Hidden]

Dear Blue1958,

Thank you for your reply. I understand the answers need to come from the Dr's but all I get is that they don't know. I've suspected early on this was coronary artery spasm and / or microvascular. There's no plan to investigate / confirm these and initially when consultant said let's just try and treat as such I agreed no unnecessary intervention. I completely understand the NHS and secondary care are under immense pressures and there are people who need more imminent / urgent care. Just needed to vent really, pathetic I know. Thanks again.

[Hidden in reply to LSCE]

Far from pathetic but very human, take care

[Hidden in reply to LSCE]

Hello I couldn’t help but feel for you and totally understand your anxiety and frustration. I still don’t know my heart function grade or whatever they call it. And I do feel that sometimes ( when I’m finally seen by cardiologist) I’m not listened to. I think you have to ask to be referred to someone who knows far more about your condition as someone else has mentioned here. This is your health and your life so I’d ask GP for a referral. Don’t reproach yourself for being concerned it’s to be expected. I do hope things improve for you and you get the answers and treatment you need. 🌹

[LSCE in reply to Hidden]

Hello,.

Thank you for your reply, understanding and kind words of support. I think you are right as all others have advised on here seek a specialist opinion. I just feel I don't want to offend consultant I'm under at a centre of excellence but it's health. Take care and again thanks for that advice

[Milkfairy Heart Star]

Hello LSCE,

I am sorry you are facing such a challenge to access the care you need.

In 2012, I was admitted to hospital with a suspected heart attack, however because my coronary arteries are clear I was told incorrectly that I couldn't have angina or a heart attack.

I then sought out a Cardiologist who knew about non obstructive coronary artery disease NOCAD.

Microvascular dysfunction and vasospastic angina.

I had an angiogram with acetylcholine which is only available in a few centres in the UK.

This showed I have temporary transient, constrictions in my microvessels and coronary arteries.

Unfortunately the understanding of Microvascular and vasospastic angina is not widespread in the Cardiology world. It is getting better.

I did, at first feel, that I wasn't believed. I was made to feel my pain was all in my head.

I describe my really bad episodes like being in labour in my heart. The pain is totally debilitating usually occurring when I am at rest.

Microvascular angina and vasospastic angina are serious heart conditions and increase your risks of a heart attack, stroke, heart failure and major cardiac events.

It can take time to find the best combination of medication that will work best for you.

I suggest you ask to be referred to a Cardiologist who has some understanding of Microvascular and vasospastic angina.

I now have a supportive Cardiologist. I can email him when necessary for advice.

I have an admission plan to guide the staff how to care for me when I am admitted.

I also have support from the Pain Management Team.

Microvascular and vasospastic angina can be bewildering conditions to live with, especially when those you look to for support unfortunately don't have the appropriate knowledge to help you.

There are several other forum members who live with either Microvascular or vasospastic angina. They, I am sure will be along to share their experiences with you.

Please don't feel you are alone.

The BHF has this information about Microvascular and vasospastic angina.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

You may find this website helpful too.

internationalheartspasmsall...

[LSCE in reply to Milkfairy]

Hi Milkfairy, I sent a reply yesterday but it hasn't appeared on here? Anyway I'll try again. I was hoping to hear from you Milkfairy. So sorry your heart condition wasn't acknowledged and treated at presentation. I can't complain about the immediate care I had after my first and even second heart attack, whisked straight to cathlab, started on meds for suspected plaque rupture, diet, exercise advice etc But the consultant although mentioned Vasospasm at second HA 5 months later and microvascular in letter did say I'm a bit of a mystery. I don't fit the picture of a HA patient. But did have high cholesterol and BP. Anyway I feel like as I haven't had another confirmed HA it's deemed I'm stable. My aim at last telephone consult was to ask for investigation in to MV and Vasospasm but I just got shouted down and I feel like symptoms dismissed. Can I request second opinion from specialist via my GP. Do you think.Id be happy to go privately which I think still requires a referral? Thank you again for your reply and advice always follow your posts.

[LSCE in reply to LSCE]

I've sent 2 replies to you Milkfairy but not appearing on here? Not sure why

[Nannysue1 in reply to LSCE]

Cant help with your problems but really feel for you. I can answer about the question of going privately though. You dont need to have a referral. If I need to see my cardiologist, I make an appointment myself. Hope that helps.

[LSCE in reply to Nannysue1]

Thank you so much for the advice

[LSCE in reply to Milkfairy]

Sorry the last has just appeared. Thank you again

[Milkfairy Heart Star in reply to LSCE]

Hello LSCE,

I can see your response now.

You can indeed ask for a second opinion, I did!

I'll send you a message as the forum guidelines ask us not to name individual doctors.

[LSCE in reply to Milkfairy]

Thank you so much that would be fabulous.

[AuntyEdna]

I feel for you I had a similar experiences over two years - even after a stress echo with Atropine staring a MV / Vasospasm event . Then an unplanned four day hospital admission showing raised tropin and the ward consultant saying I'd had a mild heart attack the cardiologist have said it's not life threatening because my arteries are just under50% blocked. I'm on Ranexa, Diltiazem, Aspirin GTN and Rosuvastatin which keeps me functioning but I still have bad days yesterday was one - it was freezing fog so not surprised. Milkfairy is the expert here couldn't have survived this year without the advice/support . Remember you are not alone there's always someone here for you take care keep safe 🙂

[LSCE]

Hello AunyEdna, Thank you so much for your reply. Sorry it took time for you to get the diagnosis. It's difficult when you feel your not believed. I know I'm not an over anxious, neurotic person. I was full of optimism after my first HA determined to make some positive lifestyle changes and get on with life, treating my HA as a wake up call. I now realise I gotta live with this. Thank you again for replying detailing your journey. It's nice to know I'm not alone in this kind of experience. Take care too

[Sunshinebrew]

Totally sympathise there just aren’t enough cardiologist with knowledge of this type of angina and where they are able to give a possible diagnosis then the treatment is a bit hit and miss.It’s such a debilitating illness and very worrying when you’re in pain and not sure if this could be a heart attack or not.

Im fairly stable at the moment occasional chest pain and breathlessness about once a week but had a good spell of no symptoms during the summer.

It’s taken 4 years though and 3 cardiologists to get here and the cardiologist I am under at the moment isn’t an expert in microvascular vasospasms but he suggested taking me off beta blocker’s and trying calcium channel blocker instead which has helped a lot. I’ve only spoken to him on the phone though and because I was much improved when I last spoke to him I have no further follow up appointments booked but will have to go through my GP if I want/need another appointment. Or if it’s really bad then go to Aand E where they’ll check if I’m having a heart attack and if not send me home!

This has been my experience and I’ve got invaluable support and information from this forum and milkfairy in particular which has helped me to cope. I’ve been told my pain is gastric and the breathless ness is lungs not heart and been told I’m a ‘difficult’ one and made to feel it’s all in my head too so I can understand where your coming from.

I understand the condition myself now so I’ve learned to manage it and I’m lucky it’s not too bad at the moment.

[LSCE in reply to Sunshinebrew]

Hello, thank you for replying it's helpful to liaise with and know others that have similar experiences with diagnosis and treatment. So glad I plucked up the courage to post. I hope you condition stays stable. Can I ask what CCB you are on?

[Sunshinebrew in reply to LSCE]

I’m also on ranolazine, nitrates llansoprazole aspirin and statins and have GTN spray which I only use very occasionally

[Sunshinebrew]

I’m sorry for the negative post! I am able to live with this condition and have many good days.I’ve been taking diltiazem since last March and it replaced Nebivolol the beta blocker I was on. Since this change I started to feel a lot better and was symptom free from June to December last year.

I’ve had some pain and breathlessness recently brought on by stress and cold weather possibly, but I’m still much improved and am able to manage the pain breathlessness and tiredness some days I’m forced to rest.

Generally I’m good

I wish you well and hope you find a treatment that works for you soon too and keep posting let us know how you get on.

Keep positive not always possible I know 😂😊🤗

[LSCE in reply to Sunshinebrew]

Thank you