Hello, I have recently joined this community and would like to ask a question please?
I have had numerous episodes of problems with my heart which started after a very nasty dose of covid followed by a severe kidney infection but the angiogram did not reveal anything. However, the horrendous nuclear heart scan did reveal some damage to the outer wall of the heart and my GP tells me that I have also been diagnosed with microvascular angina.
I am now taking ranolazine which initially made an amazing difference eliminating most of the pain and breathlessness and I felt incredibly well for a couple of months. Then after another mild dose of covid just before Christmas I have gone down hill despite the ranolazine dose being increased.
10 days ago I collapsed with chest pain, going in and out of consciousness and breathlessness. As we were on holiday I was taken to the local hospital who were great and wrote to my GP saying I needed a very urgent appointment with my consultant.
The urgent appointment has come through for mid May and as normal follow up appointments with Cardio in this area are at least a year behind the due date that's good.
I am getting so much pain and I am totally exhausted despite maximum dose of ranolazine, isosorbide and aspirin plus frequent use of the GTN spray. I feel I need to find someone to help me who specialises in microvascular angina (and actually I am not really sure how this was diagnosed! ) and I have no idea where to start. Whenever any medic mentions microvascular angina they pull a face and just mumble that it used to be called Syndrome X but they know nothing about it!
Any help and advice on where I start to get help would be greatly appreciated.
Written by
Penguin60
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I just saw your post and I really feel for you. Considering you posted months ago, I hope you are in better shape now. However, I just wanted to let you know that Dr Roberts, a private cardiologist specialising in microvascular angina (with branches in London) helped me:
My angina attacks stopped after the third week of ECP therapy; I can do many normal activities again with confidence ( like travelling by public transport) and have been exercising every day. The longest walk so far has been just over 10km ( one month after finishing the treatment). I would love to be able to work again as I am only 52 and used to have a very active life style.
I have always been a supporter of the NHS but my experience was quite traumatic so that I was forced to go private. I was not able to work or take public transport on the medication that I was given by the cardiac team at St George's after my heart attack but did not feel taken seriously at all. When I had to go to A&E one night after a third angina attack that evening with awful pain, they released me after 9 hours ( despite raised troponin levels) saying I need to relax more and not be so anxious!!! Like I take a taxi with the help of my husband to a busy A&E to sit for hours in a crowded room unable to rest properly - because of anxiety! Experiences like this have opened my eyes to how female patients are perceived and that our pain is not taken seriously. I have had three children and have always worked hard with few sick days and then you are dismissed like that?!?!? St George's did all the standard tests after my heart attack but gave me no individual treatment plan for Microvascular angina ( the diagnosis I was given in writing when I left hospital after the heart attack). The phone appointments from St George's are months apart. In fact, I just had a letter through the door with a changed diagnosis to Takotsubo cardiomyopathy! This is completely ignoring the fact that I had angina attacks for months and my private cardiologist is trying to find out why they have suddenly changed the diagnosis. If I did not have the support of Dr Roberts, I would be in a very dark, desperate place, I believe. Yes, private treatments without health insurance are expensive but what choice is there if you in debilitating pain and without hope?
As I said earlier, I hope you have received effective support by now and, if not, I am here should you have more questions regarding the ECP therapy. I am very hesitant to give any advice as I am not medically trained but I just want to share/contribute my experience.
I am glad you have found some relief from your microvascular angina.
Just a thought about Enhanced External Counter Pulsation (EECP) a non-invasive treatment that is thought to improve blood flow to the heart.
The treatment isn't approved by the National Institute of Clinical Excellence, NICE as there is few large scale studies to suggest it is effective. There are as far as I am aware nowhere in the UK that offers EECP through the NHS.
EECP is offered as a treatment in the US and Europe.
The treatment can be arduous, weekly hour long treatments for 35 weeks.
The treatment doesn't necessarily give pernament relief of angina and can need repeating.
It is very expensive if you don't have health insurance. Not all health insurers will pay for the treatment.
I researched EECP many years ago before my angina was correctly diagnosed as being vasospastic angina following a specialised functional angiogram in 2014.
I live with debilitating symptoms and end up in hospital once or twice a year to be treated with IV GTN to stabilise my coronary vasospasms.
I agree finding a Cardiologist to support you is so important.
I have a great Cardiologist. I also have a careplan to guide the staff how to care for me when I arrive at A&E and then admitted.
Having an accurate diagnosis is also essential so you can be offered the best combination of medication that will work best for you as an individual.
I suggest you contact the Patient Advisory Liaison Service PALS of the hospital to ask for an explanation as to why your diagnosis has been changed.
You may be interested in this recently published consensus document from the British Cardiovascular Society about women accessing cardiovascular care and treatments.
It includes a section on angina / ischaemia non obstructive coronary arteries ANOCA/INOCA.
The document acknowledges that women living with microvascular and vasospastic angina can have difficulty accessing appropriate testing and treatment.
Ok. Clearly my experience differs from what you have read and I have no wish to go into a long discussion on this. I did 50 hrs in which I was completely relaxed chatting to my therapist or listening to classical music. Yes, I did sleep a lot after the daily two hr treatment which I did not see as a bad thing at all as my Angina pain stopped after three weeks.
I was not looking for any advice about my NHS doctors as it is all in hand via my private cardiologist.
Finally, many areas of our lives are political - our food, education, health, even our deaths etc. It is naive to think that because something is not ( yet) recognised, it isn’t of value. Anyone who has ever moved to another country knows how significant cultural influences are.
Sorry to hear about your experience. I have only seen this post now and I am hoping you have received some help since this.
You will find that when discussing microvascular angina or Vasospastic angina, also known as INOCA/ANOCA (ischaemia/angina in non-obstructed arteries) most medics don’t have sufficient knowledge about these conditions. However, there are several groups that are working to improve this and increase awareness and access to treatment. There is a patient support group which has a lot of information on cardiologists who specialise in these conditions which you might be interested in joining. The link is below.
Furthermore, it sounds like you would receive better or more expert care perhaps from a specialist considering your current situation and not knowing how your diagnosis of microvascular angina came about. Have you had specific testing for microvascular angina? There are a few ways to test for this with some being a stress MRI with adenosine and another being a functional angiogram with acetylcholine. The latter is not widely available but access to this is improving. These tests can evaluate the function of your small blood vessels.
Microvascular angina is mostly the inability of the small blood vessels being unable to stay dilated in response to exercise. Other factors however, can also play a role such as stress and the weather. This can trigger chest pain, breathlessness, and tightness.
If you see this message, please feel free to PM me and I can recommend you a specialist in microvascular angina if this is something you are still interested in.
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Microvascular angina
Microvascular angina 
Angina 
MICROVASCULAR ANGINA
Microvascular Angina
