Unplanned hospital visit - MVD - next steps?

[Divasong]

I ended up in hospital on Thursday on my birthday! Had a black out at home along with usual chest pain. Had another angiogram to check my new stent put in last November was ok. All good & arteries not clogged. Through a process of elimination they told me they thought i had MVD and Vasospastic Angina back in late summer. Now they think its 'just' MVD as there are no attacks at night... I'm pushing for an mri for diagnosis of the MVD so at least I know for sure. Unfortunately the waves of squeezing keep coming every day. They are talking about the ganglian block again but i don't think thats for me. Put on Nicorandil to join the other whole host of meds i am on! Any advice from MVD sufferers as to what next steps should be from your experience? Not much more they can do regarding meds it seems. Thanks and hope you are all well.

[Sunnie2day]

The queue in my area (NE Scotland) for the definitive diagnostic (angiogram with acetylcholine provocation) is so long my cardiologist says 'Let's presume you have microvascular angina but not vasospastic owing to the great response you're having to the low-dose beta blocker plus aspirin.' Vasospastic angina is worsened by beta blockers so it has been ruled out in my case.

My diagnosis on paper is 'presumed MVA' and I've been put at the very back of the queue for the diagnostic owing to how well I am responding to the medication. My cardiologist says if my symptoms take a turn for the worse he'll fast-track me into that specialised angio but for now (nearly two years running so far!) I'm 'good to go'.

I have made some lifestyle adjustments taking into account of the need for controlling my other heart conditions as well as the MVA (see my profile if you've several minutes going spare) - I have worked out what my 'triggers' are after dedicated logging of BP, heart rate, ox-sats, body temperature and when-where-how much GTN I need to knock the angina down.

As a consequence of that logging, I know I need to avoid emotional stress, and most importantly I need to avoid hot and humid conditions. I have hygrometers and room temperature thermometers in every room, I also have dehumidifiers and oscillating fans at the ready in every room.

Some MVA folks are like me - heat and humidity are our triggers. But most find their 'trigger' is cold. I love winter, the colder the better but other MVA patients dread winter and long for spring and summer.

Start a log and be scrupulous about logging details like when you have the pain and what works for you to alleviate the symptoms. After about two months (usually 3-4 for best results working out triggers) you should begin to see a pattern and will be able to make the changes to your lifestyle to keep the condition under control.

I'm on Bisoprolol 1.25mg+300mg aspirin once a day (I take it in the morning) and for me it has been life-changing. I can walk uphill again and if it weren't for my dodgy knees I'd be taking stairs two-at-a-time again.

Every one is different and will require different types of beta blockers and other meds so logging is essential to make it easier for the cardiologist to determine any medication adjustments.

[Divasong in reply to Sunnie2day]

Thanks Sunnie2day. I was taken off bisoprolol & gtn spray doesn't do anything for me I'm afraid. I have 2 kids under 8,one has special needs & I'm his full time carer so there isn't much time for self care I'm afraid. I can't get the squeezing pains under control despite all the meds & have them every day - quality of life is pretty rubbish. I'm on aspirin for life.

[Sunnie2day in reply to Divasong]

Hopefully Milkfairy (Heart Star and our resident microvascular dysfunction super star) will be popping in soon to give you much better information and tips - but I will say it is my understanding MVA responds extremely well to beta blocker therapy - however vasospastic angina is made worse by beta blockers.

When 'they' said 'MVD' did they flesh that out to define 'MVD' as 'microvascular dysfunction' or did they call it microvascular angina?

The difference is important, you need clarity on that soon as and it sounds to my uneducated ears as though you need to be fast-tracked for the specialised angiogram (angio with acetylcholine provocation) to determine which microvascular dysfunction you have.

The sooner they know which it is, the sooner they can start working out a proper medications and life-style regime you need.

[Sunnie2day]

I take it every morning with my Bisoprolol and also have another 600mg I can take as needed (rarely but during summer I do take that prn dose more often as the aching lingers after the GTN stops the acute pain).

I have regular checks to ensure the aspirin isn't causing me any trouble (blood gases and it's not pleasant) and I have the 'what to watch for' list of aspirin side effects posted on my fridge-freezer as a reminder. But I've been on high dose aspirin prn since the late 90s (pericarditis turned to recurrent) and have been found to be unusually tolerant of high dose aspirin.

ETA: I have several heart conditions, starting with childhood incurred Rheumatic Heart Syndrome (RHS), a 'trivial' scarring on my aortic valve thanks to the RHS, the mildest case ever Rheumatoid Arthritis (brought on by the rheumatic fever that left me with the 'gift' of RHS), recurrent pericarditis (thought to be a consequence of Dengue Fever Stage2) with pericardial scarring-thickening-effusion. Aspirin seems to be effective for me but everyone is different, no-one should be taking aspirin at any dose on a regular basis without proper medical supervision.

[Sunnie2day]

Do you take the aspirin as needed, or is it something you take regularly with your other medications?

[Sunnie2day]

Thank-you for replying. That's a quite reasonable prn dose, good on yer!

[Sunnie2day]

Basically it means 'as needed'. PRN fully translates as 'pro re nata', Latin for 'when required' - lol, they worked out long ago it was easier to say PRN means 'as needed' and leave it at that 😁

[Milkfairy Heart Star]

Hello Divasong

Belated Happy Birthday. I am sorry to hear that it wasn't the best for you this year.

I was offered a Ganglion Stellate block and Spinal cord stimulator many many years ago when they thought I had Microvascular dysfunction....told me I was living with benign pain perception problem not real angina.

I asked for a second opinion as I told them I thought it was unethical to treat a patient's pain in such an invasive manner without knowing how the pain was caused.

I sought out a Cardiologist who carried out the appropriate testing which lead to my ' objective' diagnosis as my Cardiologist says rather than a presumed one of vasospastic angina.

Sunnie has give you some brilliant information already including why getting the correct diagnosis is important.

I suggest you ask your Cardiologist to refer you to the researchers carrying out research into the diagnosis and possible treatment of microvascular dysfunction.

The PRIZE trial is being carried out in 2 centres in London, Oxford, Cambridge, Blackpool and Glasgow.

More centres may well pick it up as well.

clinicaltrials.gov/ct2/show...

The other study which is just about to start is at St Thomas's hospital.

isrctn.com/ISRCTN94728379

If you can't travel ask your Cardiologist to get in touch with the teams running the trials for further advice.

Keep pushing for a Cardiac MRI.

If no joy ask to be referred elsewhere.

Stress is a big trigger for many of us living with Microvascular and vasospastic angina.

I took the difficult decision to retire early from a very stressful profession.

You can't ' retire' from your family responsibilities. Have you any other avenues of support?

Is your GP or Health visitor able to sign post you to any local charities or other resources to help you?

If you need some more research information just give me a shout.

Be prepared to be persistent and to keep advocating for yourself.