So i finally saw a cardiologist who took the necessary time to explain what I had and reassure me. He said I had coronary spasms that occur at night and are unrelated to lifestyle and caused very small damage to my heart (Minoca). He also said with my current meds it won’t happen again, and that my heart and arteries are healthy.
Apparently my breathing problems come from inactivity for almost 3 months and anxiety.
Still no news from the rehab centre and I don’t want to wait as it could take a few weeks with the upcoming holidays etc.
I’m interested in your experience and advice on getting better. Im trying to focus on health and not so much on the past, diagnosis etc. I really need to increase my strength and energy levels.
Thanks 🙏
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Healing_Heart
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I am glad to hear that you had a positive consultation.
I have lived with coronary vasospasms, vasospastic angina for over 11 years. I am as my Cardiologist says ' maxed out' on my medication.
My vasospastic angina doesn't respond well to medication and I have just returned from my latest hospital stay, following treatment to stabilise my unstable symptoms.
Vasospastic angina is rare and in my experience, sadly very few Cardiologist have much experience in caring for us as a group of patients. The Cardiologist's comments to you reflect their lack of knowledge of the condition.
Perhaps seek out a Cardiologist who has more experience and greater knowledge about microvascular and vasospastic angina who can offer you further appropriate testing.
Breathlessness is a symptom more often associated with microvascular angina.
I have posted the BHF website information about vasospastic angina previously.
The information includes a link to a Facebook support group which you may find helpful.
There is also this patient group formed by four patients with over 50 years combined experience of living with microvascular dysfunction and coronary vasospasms. They are supported by 30 world leading Cardiologists.
Regarding cardiac rehab. It's important that the staff understand vasospastic angina.
Most people living with vasospastic angina are able to exercise.
However if you do too much you may experience delayed chest pain at rest later.
I completed my stress echo with flying colours. I then experienced chest pain afterwards and had to wait in the department for my chest pain to settle before going home.
I had more symptoms in the night later.
I worked individually with a physiotherapist and I do a very slow long warm up, keep my heartrate at a certain level, then do a long slow cool down.
I kept a detailed log and gradually increased what I could do physically.
I manage my stress, I found Mindfulness Meditation, Tai Chi and yoga help as well as walking my dog 3 miles every day.
I keep warm as the cold is my major trigger for coronary vasospasms.
It's a bizarre condition. I walked up several hills in the Lake District this summer yet landed up in hospital due to the dramatic drop in air pressure due to a recent storm triggering my coronary vasospasms.
Thanks a lot Milkfairy. I’ll have a look at the resources you shared later as now I need to deal with anxiety..
My cardio was positive and for now I’d like to believe him. He explained all the reasons how everything pointed towards what I have. I’ve understood it must be quite rare as it is even rarer than Myocarditis which was the first diagnosis.
Id never had this before, and so far the only trigger has been eating after fasting. The meds are working really well on my high blood pressure. I’ve also asked for a nitro spray just in case I wake up again in pain.
Yes, I will start getting chest pain whilst eating or just after eating. I can't over eat which is a good thing. This is known as post prandial angina.
Caffeine, artificial sweetners and chorizo sausages will trigger my vasospasms.
thanks again for all the info. Still no reply from the rehab centre but what you say about warming up/cooling down before and after exercise makes sense. Reading that you walk and even hike gives me hope.
What you said about the change in weather also resonates. I had breathing problems in the evening a long time ago when living in the south of France, in Winter/beginning of Spring. I had all sorts of tests done and doctors found nothing. I also had one when going skiing, at night. Now I think I already had this condition. I’ve also had a flutter and ended up in hospital many times in my life - although not for some years. In other words, I’ve always known somehow my heart was sensitive to stress, but I do believe things took a turn at menopause.
Have you ever had to use your nitro spray? What happened when you went to hospital last summer?
Last question: I have been prescribed statins, do you take any? I wonder if I need any since all this isn’t related to cholesterol.
GTN/ nitro spray can help stop a coronary vasospasm in it's tracks so is an important medication for treating vasospastic angina.
If you haven't used it before, I suggest you sit down first before using it.
It can make you feel light headed and dizzy. You can also have a headache afterwards when you use it at first.
I don't personally use GTN spray, it works and then I experience worse rebound coronary vasospasms.
Coronary vasospasms are thought to be partially due to the lining of the blood vessels not working properly, endothelial dysfunction.
Endothelial dysfunction leads to obstructive disease, permanent blockages of the coronary arteries.
Having obstructive coronary artery disease and vasospastic angina is not good news.
Statins also reduce inflammation and stabilise even small areas of plaque which can break off or erode forming a blood clot which can lead to a heart attack.
I take Rosuvastatin 10mgs which keeps my cholesterol low enough to keep my Cardiologist happy.
Unfortunately I am badly affected by my vasospastic angina. Despite the input from some of the world leading experts in caring for patients living with vasospastic angina, I still experience frequent episodes of chest pain. I am on very high doses of several different medications.
When my symptoms become more frequent and severe I go into hospital where I am given an IV infusion of GTN. I am usually in hospital for about 8 to 10 days.
I usually end up in hospital once or twice a year.
I have a written careplan to guide the staff how to look after me.
This is me though, my vasospastic is 'brittle' as my Cardiologist has said, however hopefully with the right combination of medication , you learning your triggers of angina and managing your stress, your symptoms will be well managed.
I’m really sorry to hear about all what you need to cope with, it sounds like you’ve had to learn a lot to keep things under control, which is truly impressive. I have to admit too that all this isn’t to reassure me 🫤. I feel new to this and still in denial I guess - 2,5 months ago I thought I was 100% healthy and weirdly enough, my cardiologist told me again that my heart is healthy.
So at this stage, I’m not sure what to expect next. I think I should ask the cardiologist to write a letter with info about my condition in case I end up in E/A.
Today, I spent the afternoon at some friends for the kids bday party, and walked 2500 steps in total (against 800 last week)… and I’m feeling exhausted! The good news though is I started breathing normally while there (which goes in favor of my shortness of breath being partly due to anxiety).
Feeling this exhausted worries me a bit. I’m seriously wondering how long it’s going to take before I’m able to lead a normal-ish life🙄.
i am glad to hear that you have had a more helpful appointment with a cardiologist
Milkfairy has a lot of experience with this condition and offers really helpful advice and information - i support their suggestion that you should try to find a consultant with more relevant experience who can take on your care and monitoring - i also feel that a support group which focuses on INOCA/MINOCA and similar issues would be helpful for you
this is a field which is only now being explored and most cardiologists have little or understanding of it and can easily give inappropriate advice without meaning to do that - specialists are few, so support from other people with these conditions is really important to help you learn to live with this
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Just back from Echocardiogram
New to heart problems 
Back to being scared - AVR
My consultant withheld information about my heart from me. I've just found out information I didn't know from my Surgeon after my Surgery.
SEVERE AORTIC STENOSIS
