Microvascular angina

[Rosiejim1]

Hi, I have microvascular angina diagnosed a couple of years ago and as it's not stentable and standard meds don't work for me I was referred to the pain clinic. I have had 4 stellate ganglion blocks over the last year. The first one relieved my pain totally for 7 weeks but I'm finding that they are now not helping as much. Has anybody else experienced this? Are there alternative treatments out there? My cardiologist discharged me once I was under the care of the pain team too. How do I know my condition hasn't changed without some sort of back up? Sorry for the rant but I have pain almost all the time now and at 56 I obviously am concerned for my future 😓

[Kristin1812 Heart Star]

That must be v difficult, if the Drs seem to now be just focussing on pain control. Does that mean they’ve tried all the possible meds for your heart? Do you get angina on exertion, or unstable angina.... just anytime, regardless of what you’re doing?

The reason I ask is that I have had HAs and lots of stents, and meds seem to help the angina on exertion. But I also have microvascular disease, causing unstable angina

This, too, has gradually improved a lot with a package of pills, v regular exercise, improving the healthy heart muscle, and better pacing. I still get real ‘wipe outs’ if I do too much. It can take a day to recover.

I also have wondered why they tried a ganglion block, so thanks for explaining that to me! Unfortunately, in my case, it didn’t help.

[Rosiejim1 in reply to Kristin1812]

Hi Kristin,

My pain comes on at any time. On exertion yes, watching tv yes, very cold weather, emotion, stress, after eating, lack of sleep ......these are all triggers to name a few.

I walk about a mile a day with my dogs, sometimes more. There are days when I am totally wiped out and can do very little however. In a way I wish there was something that could have been stented when I had my Anglo.

I am thinking of maybe paying privately to see a sympathetic cardiologist but I can't really afford this. Hope you are well

[Milkfairy Heart Star]

Hi

I also live with Microvascular and coronary artery spasms. It is a challenging condition and you do need to be under the supervision of a Cardiologist. This is by no means ' just ' a pain condition.

There is growing evidence to show that our risks of heart attacks and heart failure are increased. Calcium blockers, Statins, antiplatelet therapy , ACE Inibitors and ARB's are sometmies recommended too. But not beta blockers for those of us with coronary artery spasms as they make the spasms worse....and no cocaine!!

There is very little evidence to support the use of Ganglion blocks or Spinal cord stimulators. They may reduce the pain but they are not treating the possible lack of blood supply to the heart muscle.

I suggest you asked to be referred back to a cardiologist with a sympathetic understanding of this problem.

I have also attached some updated info on the BHF website about MVA and an article about Prof Colin Berry's research.

I hope it helps. Our condition is challenging to live with and difficult to treat but there are other statergies that you can try. I attended an 8 week Pain Management course which I found really helpful. I still live with a great deal of pain in my life but the way in which I emotionally respond to my pain has changed.

bhf.org.uk/publications/hea...

bhf.org.uk/heart-matters-ma...

bhf.org.uk/heart-matters-ma...

[Rosiejim1 in reply to Milkfairy]

Thanks for your response. It's really helpful. I have tried a lot of cardiac meds but the side effects were dreadful, sometimes worse than my chest pain. Statins are a problem for me as I have nerve damage in both legs following spinal surgery 3 years ago and th3 statins caused horrendous leg pains and cramps. The link to Colin berry is very interesting. I think my cardiologist discharged me as he just didn't know what to do for me as I didn't 'fit 'like the rest of his patients. Ie meds didn't help, ers.

I really don't know how to find a sympathetic cardiologist

[Milkfairy Heart Star in reply to Rosiejim1]

I am sorry that you have had difficulty finding the support and care you need.

Perhaps ask your GP to refer you back to a cardiologist, take a copy of the BHF leaflet about Microvascular angina.

Then ask the cardio what is their understanding of Microvascular dysfunction and angina. If they say not much ask if they are willing to work with you to find a more suitable treatment and monitoring of your condition or refer you to one of their colleagues.

Then if necessary a gentle firm reminder to them that there is no dignity being in pain. Any lack of respect by your pain not being acknowledged can be followed up by a letter to PALS.

You do need to be an advocate for yourself.

[Hidden]

Hi sorry to hear about your problems

My advice would be go back to your GP and ask for a referral to a cardiologist who specialises an Microvascular Angina and talk to your GP about Ranolazine (see my post Refractory Angina) in medical terms its a relatively new drug and I`ve found that there are a lot of doctors even in A&E departments who do`nt know about it.

P.S. you can check for a cardiologist yourself by looking at your local health website and looking for their cardiologists and their specialites

Hope this helps.

[Rosiejim1]

Hi, I've been on ranolazine for a while now. I'm not overly convinced it helps until I miss a dose! I will try to find a cardiologist as you have suggested as my gp thinks my condition is basically just caused by anxiety......der...... I'm anxious because nobody seems to understand what it feels like to have chest pain all the time, let alone how to treat it. Thanks for your reply....it is appreciated

[JonathanH]

Hi Rosie,

I recently diagnosed myself as possibly having microvascular angina (MVA) and, since my local cardiologist seems not to believe in it, I did some research and found a Dr Robin Roberts (alexander-house.co.uk/index... who seems to specialise in the disorder and offer a treatment called external counterpulsation (ECP) that seems to offer a good chance of significant improvement. The treatment involves rapid inflation and deflation of inflatable cuffs timed according to one's heart. It sounds wacky but is approved by the FDA and peer-review papers confirms that it works - even stimulating the production of growth factors and progenitor cells that seems to cause growth of new blood vessels. Dr Roberts agreed that I probably have MVA and I am currently negotiating a start date for treatment (35 one-hour sessions).

I am really fortunate that I am able to afford EECP privately as it seems there are few NHS centres and that it is difficult to obtain the treatment on the NHS. Dr Roberts said that treatment is available for in Bradford (I live in Yorkshire) for patients who satisfy strict criteria. I also found this statement on a website eecp4all.com/faq.html:

"Q: Is the EECP® Therapy available on the NHS & covered by private insurance companies?

A: Yes. NHS approves EECP® treatments for the patients who meet the NHS Criteria. Most medical private insurance companies cover the treatment cost."

I will report back on how my EECP works out but my current view is that anybody with MVA should fight with all their might to obtain the treatment.

[MARYFRED in reply to JonathanH]

Hello JonathanH I am replying to your post of 5 months ago and wonder if you managed to get EECP treatment and if it helped with your MVA. I am awaiting an MRI with dye infusion and in the meantime my Consultant has taken me off all medication which I feel may be "dicing with death" but he is the expert. Very best wishes

[JonathanH in reply to MARYFRED]

Hello MaryFred,

It's lovely to hear from you. Who is your consultant: does he have actual expertise in MVA? Surely if you need to come off your medication for the MRI scan, you can come off it just a day or two before, so it seems odd to take you off it for a long period. I don't know that you are dicing with death but taking you off medication must be increasing your suffering. I don't know that Consultants necessarily are experts: certainly patients are dissatisfied with many cardiologists.

I had a first course of EECP in May and I start a top-up course on Monday. So the answer is that it transformed my life for the better but still left me symptomatic with good and bad phases. As it happens, I relapsed about 2 weeks ago after a period when I felt on top of the world, and I have not been so good since then - but still better than pre-EECP. The worst feature of the past 2 weeks or so is that I have reverted to a condition where angina and shortness of breath keep me awake almost every night from about 1 a.m. to about 4 a.m.

I often felt very unwell before my first EECP course, and my activities were very limited, as in turn was my social life. Life was frankly miserable. As well as obvious cardiac ischemia symptoms such as angina and shortness of breath, I had other things going wrong, including

- GI tract function (delayed transit, bloating, gastro-oesophageal discomfort);

- unpleasant sensations including tingling-ish sensations, dull and sharp pains in various parts of the body;

- headaches

- dizziness;

- occasionally slight visual disturbance

- occasionally an unpleasant change in my spatial sense of myself.

It was the "other" symptoms (not angina and shortness of breath) that cumulatively made me feel particularly horrible and the EECP went a long way to abolishing these, in particular my GIT function is very good. I have had oesophageal problems for decades because of a hiatus hernia and my oesophagus has been more comfortable than for ages, but has slightly deteriorated in the current relapse. The angina and SOB was greatly ameliorated and I was able to resume ordinary activities, albeit with limitations and with episodes of worse health. Pre-EECP, just making a cup of tea was a struggle in my worst periods and I have not been anything like that post-EECP.

What has EECP done for me? It has transformed my life from misery to enjoyment.

I have learned that, while EECP has been life-transformative for me, it does not work for everybody, though it appears to fail completely only for a small minority. There are also patients who have discontinued because EECP initially worsens symptoms: one patient who went through a time of worsened symptoms advised that you have to "tough it out", which she did and subsequently benefited. Amongst those patients who do benefit from EECP, it is unpredictable how many hours of treatment they will require and how long they will keep well before they need a top up. Dr Roberts mentioned one patient (I think with "conventional" CAD) who comes back for a top-up every other year and an MVA patient who relapsed a few months after the first treatment course and then (like me) had a second course, since when she has been well for 10 years.

Well, I have had to give some caveats but EECP has been fantastic for me in enabling me to live a reasonably normal and enjoyable life, rather than living in misery and semi-house arrest. It doesn't bear thinking about how awful my life might have been without EECP (though I would then have hunted harder for effective medication options) and I am optimistic that my approaching top-up course will also be really helpful. In fact, I can't wait for it to start! Unfortunately, if you don't have insurance that covers EECP or lots of money, then it will be very difficult to access because it is not NICE-approved. And the only way to discover if EECP works for you, of course, is to try it.

Kindest regards

Jonathan

[kel55 in reply to JonathanH]

Hi, sorry for comming to this party late on, l hope your all stillabout. l have MVD with CAS and have a radio frequency stelate ganglion blocks in place at the moment after having two medical blocks. The BHF is not the place for usbecause they see it as a side show to atheroscloris, they toldme this to my face! l will carry on next post

[JonathanH in reply to kel55]

Do carry on. I am appalled at the BHF. Have you been introduced to the secret Facebook group Heart Whisperers for the likes of us?

[kel55 in reply to JonathanH]

that post was months ago? l was just scroling through and the post was shaded so l pressed it and it posted? Whats heart whispers?