Health Update

[Tos92]

Hello all & a very Happy New Year!

Some may have noticed (or may not) that I have not been very active on HU for sometime. For those that may already know my heart history, I had a MINOCA (myocardial infarction in non-obstructed arteries) in Jan 2022 whilst on holiday. I was diagnosed with coronary artery spasms, and a congenital heart defect in the form of a myocardial bridge which was considered the culprit.

I have struggled with a concrete diagnosis and treatment plan since coming back to the U.K. due to it being an under-diagnosed condition and very limited support from my local hospital. I recently went private and saw an INOCA specialist (ischaemia in non-obstructed arteries) after my GP mixed up my referral to be seen on the NHS due to an increase in my symptoms.

It has been the best money I have spent going private to date! The cardiologist almost immediately gave me my diagnoses without testing which he will not pursue at this time due to a spasm already being seen at the site of my bridge. He said that my clinical picture is very clear, and I not only have coronary artery spasms (CAS), but I also have microvascular angina (MVA). I was symptomatic for a 1.5 years prior to the MINOCA, with daily chest pain and upper back pain and now it makes sense having added MVA to the diagnosis of CAS.

The specialist is now working with me to create a treatment plan that will help provide symptomatic relief and I am hopeful after a long time. I will be referred to a colleague of his for future follow-ups and maintenance, as he has now retired from the NHS and only holds a small private clinic for complex cases like mine. He was very empathetic, professional, and knowledgeable which really made a difference.

Needless to say, it is a huge relief. I have been treated by cardiologists that have dismissed my symptoms, made me to believe I was perhaps crazy, or brushed it off as something entirely different that was not cardiac related.

If anyone is in a similar position, I used the below site to locate the specialist, INOCA International. They also have a sister Facebook page which I will also link and they have been tremendously supportive. I am happy to provide the specialists’ details to those who would like to see him via a PM.

inocainternational.com

facebook.com/groups/2879606...

I hope my experience might be helpful to those that are still struggling when it comes to a diagnosis regarding CAS and MVA in the U.K.

Wishing good health to all and I look forward to engaging on the forum again ❤️

[MarmiteB]

thank you for your update, finding the right healthcare professional makes all the difference- especially as a complex case. I was happy to read your story and wish you all the best x

[Gillph in reply to MarmiteB]

I wish you well, I really do. The wait for diagnosis is dreadful and it’s fortunate that you now have one even though you’ve had effectively to pay twice. All the best.

[Tos92 in reply to Gillph]

Thanks Gillph. Yes, fighting for a diagnosis felt like half of the battle and I’m glad that’s over now.

I wish you all the best too.

Tos

[Tos92 in reply to MarmiteB]

Thank you MarmiteB. It really does make a difference!

I hope you are keeping well and wishing you all the best too x

[Blearyeyed]

So nice to hear from you with such positive news.I know you have worked very hard on learning about your condition and getting your diagnosis properly confirmed , it will pay dividends now.

Your experience as a patient , knowledge and caring attitude mean that you are an invaluable source of information and advice on these lesser known conditions and a great asset both in our forum community , but also in the other charity support groups that you generously contribute to.

I hope we will see you pop up often again now the busy period of seeing specialists is mostly settled and keep giving us regular updates of how well the treatments work and what self care you find useful. You are a reassuring and calming voice on this subject and coping with heart issues in general.

As my daughter may have experienced this issue last March and her NHS Cardiology appointments aren't bearing much fruit , as there is little knowledge on these issues or heart conditions in young people in my area, I will definitely be looking at the links you've provided as I'm sure we will need to find our answers privately as well.

Take care and welcome back , hugs , Bee

[Tos92 in reply to Blearyeyed]

Thank you so much for your support Bee! I really enjoy reading your posts and responses.

I know how challenging it can be to be diagnosed with a heart condition whilst still young as we have a few factors against us when it comes to being taken seriously by some health professionals. I really hope things improve for your daughter soon. If you decide to go down the private route, your daughter can ask to be referred to be seen on the NHS after the initial consultation for future treatment and follow up which may help reduce the waiting times and commence an earlier treatment plan for her.

❤️

[Fanfab1]

hello it’s great news that you’ve had a definitive diagnosis as that is a major achievement and so positive for mental health and that you will be treated / supported going forward. Even if we continue to experience problems knowing what’s going on and being supported is key.

Just curious the bridge is not part of diagnosis other than spasm at that site, was the cardiologist of the view the bridge is definitely not the cause or does not contribute to your issues?

I hope your treatment and support plan lets you get your life back to some sort of normality!

❤️

[Tos92 in reply to Fanfab1]

Hi Fanfab1,

Yes, having a definitive diagnosis is such a relief. Although I’m not enthusiastic about the MVA side of things in addition to the CAS, I welcome the diagnosis after a long time of being in pain.

No, the cardiologist is in agreement and of the view that the bridge is contributing to the CAS as I had very low risk of developing cardiac problems due to no significant family history, and being otherwise fit and healthy. Therefore, with the spasm being seen at the site of the bridge during my angio after the MINOCA, that is now considered as part of the cause and supports the CAS diagnosis.

I will continue to update where possible with the hope it can help others. I hope you are keeping well ❤️

[Milkfairy Heart Star]

Good to hear you have a diagnosis from whom I presume was Prof K, whom I know well, I saw him for many years before he retired from the NHS. He was the Cardiologist who aranged my angiogram with acetylcholine in 2014 which confirmed my diagnosis. I had been presumed to have microvascular dysfunction before this testing.

I will never forget the relief I felt when I was told by the Cardiologist performing my angiogram that they knew why I was having my chest pain.

I hope you will be able to work with your Cardiologist to find the best combination of medication to help you best as an individual.

[Crystal614]

That's great news to finally get a diagnosis. I know not all cardiologists are the same but some really do need to listen to their patients and take what they say more seriously. For some of us we go round in circles trying to get the right answers and constantly hitting a brick wall, it can be so frustrating. Wishing you all the best x

[Tos92 in reply to Crystal614]

Thanks Crystal. I hope you are continuing to do well on your cocktail of meds x

[Crystal614 in reply to Tos92]

I am struggling at the moment. Been having worsening chest pain either during or after exercise. Was seen in hospital just before Christmas after becoming unwell at GP surgery, GP had to call an ambulance for me. Waiting for a Nuclear scan (perfusion) there are a few things cardiologist needs to look for. To check to see if I require any stents done and also to see if there is evidence of a possible HA that may have happened a few months ago. I have a history of "electrical" problems, ( I have a pacemaker) so we don't know if there is a connection with this or if disease is causing current problems. x

[Tos92 in reply to Crystal614]

I am sorry to hear this Crystal. It really can be an awful disease to have at times. How was your MVA diagnosed?

What types of medication have you trialled for the MVA? I remember you said that you were taking Trimetazidine a while back. The U.K. equivalent to that would be Ranolazine as I’ve just recently found out. I was on Ranolazine in Sept 2022 with suspected MVA but I could not tolerate the side effects to which a slightly ignorant cardiologist told me, it couldn’t be MVA however, my recent diagnosis has proved otherwise.

I understand you have other heart issues apart from the MVA which maybe causing your current symptoms however, have you ever tried Nicorandil? It is commonly prescribed in MVA and I wonder if it would provide you with some relief as I’ve heard good feedback on its use from both patients and INOCA cardiologists.

Please keep us updated and good luck for the upcoming test x

[Crystal614 in reply to Tos92]

I originally had a CT coronary angiogram. Which was normal. Chest pain continued so I went on to have an angiogram. Normal again. For about 2 years I was back and forwards to my GP trying different medication. I was prescribed a GTN spray which helped then I went onto Isosorbide Mononitrate. My GP became increasingly concerned about my chest pain and he felt I had Microvascular disease. He wrote back to cardiology that's when I was put on Trimetazidine to see how I responded to it. There was a huge improvement and I have done really well on it. But things started to get worse. I then went onto Monomil XL- another improvement for about 10 months. Then a Nitrate patch added did ok for a further 6 months or so. Then went downhill. Been seen in hospital a few times. I spoke with my cardiologist (who has now left) he said that this is MVA, other doctors have said the same and that I have angina. They think I have some disease in small vessels. Tried to get MRI stress perfusion done. Request was declined, this was at another hospital . Because of the "pacemaker in situ it will limit diagnostic image quality". I think I know what is causing current pain and it is linked to Microvascular disease as my previous cardiologist told me. But I need to be 100% certain it's not an electrical problem adding to this which is why other specialists have been brought in on this. I know about Nicorandil, I've not tried it yet! and thank you. I will keep you updated.

[Tos92 in reply to Crystal614]

I suspect I’ll be on a similar journey soon in terms of trialling meds which I absolutely hate. But I’m willing to give anything a go, even if it provides temporary relief before adjusting the meds again. I’m not sure if your previous cardiologist was a specialist in MVA but if not, I can tell you from first hand experience it really does make a difference when you have a physician which has expertise on your condition. I wonder if you would also benefit from seeking out a cardiologist in MVA who could better guide your treatment plan and care?

I was going to suggest that a stress MRI can show problems with the micro vessels however, the pacemaker probably won’t allow for a definitive diagnosis as you mentioned yourself.

Take care and I really hope your next update is positive.

[Crystal614 in reply to Tos92]

I have the name of a specialist from the inocainternational web site. I have a previous letter from a cardiologist that states a MIBI scan cannot fully rule out Microvascular disease and I think you are probably right about the pacemaker. I'm not entirely sure any scan can fully rule out MVA as I have had this conversation before with doctors and have it in previous correspondence even about an MRI. It either shows up or it doesn't. I also told doctors at the hospital that I am suspicious that there may be spasms going on in the vessels anyway, as I cannot tolerate high doses of beta blockers makes the pain worse, I have to stay on a low dose because of taking Flecainide for SVT. You take care of yourself as well. Update you when I can.

[Tos92 in reply to Crystal614]

I’m in agreement with you that perhaps any type of scan or other types of testing may not completely rule out MVA however, they can help provide an indication. From my meeting with the cardiologist the other day, he did say that the hospital he used to work at have specialised technology which can see disease in the smaller micro vessels after a Stress MRI or MIBI has been conducted. But, I don’t think this technology is widespread unfortunately and only a limited amount of hospitals would have it in the U.K. which is a shame.

Take care and hopefully speak soon.

[Valentina98]

Hey Tos

I'm pleased you've got a diagnosis and a treatment plan. It sounds like you've definitely gone the right way going private.

Sounds like you've got a great support network but we're here whenever you need

V x

[Tos92 in reply to Valentina98]

Hi V,

Thanks again for the support. I know I have already said this, but congrats again on becoming a soon to be mum! I can’t wait to hear about the gender reveal if you decide to have one. X

[Valentina98 in reply to Tos92]

Nope not having a gender reveal. I'm being old fashioned and will find out the sex when the baby arrives. ☺️😊

[Yumz199725 in reply to Valentina98]

Aww I didn't know you was having a baby aw congratulations x 🎊❤️

[Valentina98 in reply to Yumz199725]

I only posted it on here the other day 😊

[Yumz199725 in reply to Valentina98]

Oh sorry I didn't see x

[Valentina98 in reply to Yumz199725]

It's okay ❤️

[Yumz199725]

Aww hun I wondered why I hadn't heard from you x so glad you finally have a diagnosis!! 👏👏🙌🥰. I hope your new treatment plan works well for you ❤️

[Tos92 in reply to Yumz199725]

Thanks Yumz. Yes, fingers crossed things finally fall into place. Hope you are keeping well x

[Yumz199725 in reply to Tos92]

Yeah I really hope it does fall into place have they got you on any new medication?. Yeah I'm trying my best to keep well in this dodgy cold weather, I have been ill 3 times in past 2 months. And cold weather seriously messing with my asthma must of had my blue inhaler like 4 times today! I have an unexpected telephone appointment with my consultant next week aswell and an asthma review which I'm glad about. X

[Tos92 in reply to Yumz199725]

Yes, I’ll be trialling new medication. Hopefully it helps. I know you’ve been poorly, the weather has been particularly bad where I am. I’m currently undergoing investigations for asthma as well. I hope the tests come back negative. That’s good news that you will be having the telephone appointment and asthma review. It’s really important to stay on top of symptoms, especially in this weather x

[Yumz199725 in reply to Tos92]

Thanks hun. Aw I really hope you aren't asthmatic ontop of everything else. My asthma is playing up so bad just can't breath properly sooooo breathless it's awful especially when I try and sleep I've taken my blue about 10 times in the past few days 😔vans it's not helping 💔☹️. X let me know how your tests go 😘