Cardiac syndrome x
Does anyone one have cardiac micro va... - British Heart Fou...
Does anyone one have cardiac micro vascular disease and how do you manage it I’m suffering even on medication
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Henrietta35
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MilkfairyHeart Star
Hello,
Cardiac Syndrome X is an outdated term for Microvascular dysfunction/ angina.
It tends to be used in my experience by Cardiologists who have limited experience or knowledge of the risks associated with Non obstructive coronary artery disease such as Microvascular and vasospastic angina.
Are you seeing a specialist?
How has your microvascular dysfunction/ disease/ angina been diagnosed?
I live coronary vasospasms, I have spasms temporary transient constrictions in my microvessels and coronary arteries.
It can be a challenge to live with and treat. It takes time and patience to find the best combination of medication to help you best.
Even after 9 years, I am rarely pain free despite being on high doses of medication.
I end up in hospital from time to time too.
You may find this website useful it is written by patients for patients. It has a section on coping strategies.
Hi Henrietta35. I'm so sorry you're dealing with this. I was diagnosed with microvascular angina last year at age 39 after a bunch of cardiac testing. I am fortunate in that I don't have the painful spasms some people endure, but I have a really hard time with fatigue and do have regular episodes of chest tightness/discomfort. My cardiologist is trying me on ranolazine -- I can't tolerate beta blockers or other drugs that lower blood pressure because mine is already really low. It seems like most people with this condition have to do a lot of trial and error to find the medications or lifestyle modifications that work for them. It's frustrating, but having a cardiologist who will really partner with you in this is huge.
Another thing I've personally found helpful is being proactive about rest. I used to just push through fatigue to get things done, but then I would have a rebound effect where I'd feel terrible the next day. Now, even if I have a day where I feel really strong and energetic, I still make time to rest (not always easy with a small child!) and that seems to help keep my energy stores level.
Take care of yourself!
Really good advice you give ……I’m just picking out two of your really good ideas …..pacing yourself instead of pushing it’ which took me ages to master!
And secondly, working out a partnership with your Cardiologist. So, so important.
We have a few people here describing rather acrimonious relationships with specialists and it worries me, and seems such a shame, when we really need the benefit of their expertise.
Thanks so much for sharing.
Just a thought, what happens when a patient encounters a Cardiologist who has no expertise or experience of caring for a patient with Microvascular or vasospastic angina?
Hi Milkfairy. I think you have described clearly how you have build a partnership with specialists, who have then become more open to working with you. I also realise that it can take more time with some.I know not all are as open as others, and can get impatient or unhelpful, but so can we!
It’s the partnership word that caught my eye …I have found this so important in getting the best out expert/patient relationships.
It is however a two way process of mutual respect. The clinician acknowledging the expertise of the patient's lived experience of their condition.
It's difficult to establish a relationship with a clinician who is unable to actively listen.
How often as patients are we asked what matters to you?
How can we help you to live the best you can with your heart condition?
Absolutely. Mutual is the word! I’ve worked with lots of Consultants and thankfully the stereotypical arrogant style of non-listener, seems to be fading. Not gone yet!But we, as patients, don’t always help ourselves in finding a way to work together. Your point about being experts on our own experience is well made. They have their expertise and we have ours, and sometimes it pays to assert that,
Indeed!
Yep I have it although I think at the time after an angiogram my Cardio just diagnosed mva because he couldn't come up with anything else ! However since then I've gathered a few more heart problems so no idea which causes which symptoms. I'm on Bisoprolol and have a pacemaker for bradycardia, I do have a gtn spray but not used it for ages as it drops my already low bp to low ! I have started to get a dull central chest ache which could be the angina so will be talking to my Cardio shortly.
Tricky, it's so so so tricky! I have other heart conditions so when the microvascular angina hits I have to sit here for a bit trying to work out which condition is really manifesting.
I have suspected Microvascular dysfunction/angina. I had a telephone review by another cardiologist (not consultant) via NHS and none of my earlier records were available to him so I had to go through it all again. Apart from dealing with the not knowing aspect its really frustrating that there was no history available to him (don't know why) and that after 2 weeks he had not even written up the review notes to forward on to me and my GP. I went privately initially as I couldn't stand the long wait not knowing and so I had an echocardiogram, CT scan and angiogram. Lucky my husband has some insurance! I will look at the research but like some of the guys posting I'm not convinced that those who I have seen already know much about it. I'm waiting to hear about having another test. I'm doing OK on the meds (I was kind of OK before) but I am unsure whether I am on the right ones. I hope these posts help in some way.
I have lived for 9 years with vasospastic angina.
Mine was diagnosed by an angiogram with acetylcholine. Only a few centres in the UK offer this type of testing.
The problem we face as patients is the lack of knowledge of how to diagnose and treat microvascular dysfunction and coronary vasospasms.
It takes an astute Cardiologist at the top of their game with a bucket full of compassion to care for us as a group of patients.
I was diagnosed with microvascular dysfunction after a stress ecg (significant ST depression) and an angiogram showing an issue with the pressure in my heart but clear arteries. I'm on felodipine, rosuvastatin and GTN. Apart from the severe headaches at the start of taking the felodipine, I've no other obvious side effects. I use my GTN all the time, rarely a day I don't use it. I use it as a preventative before I exercise, even a short walk to the local shop. If I'm running I'll often have to use it before, during and after. I've lost 3 stone and with the meds I feel I have good control. I do have days of extreme tiredness so I'll try and rest when I can. I work from home so will have a 10 minute lie on the bed when I need it. I hope you find the right balance of meds and rest
Hello Henrietta35,, I was diagnosed with micro vascular disease a year ago, and have been on Losartan, Diltiazem, Atorvastatin ever since. Weight was an issue and I did lose a lot but sadly gained some this year. I regularly take my bp too and send these to my cardiologist. I try and fit in a long walk a day (about 5000 steps ) but not always😔It’s a constant struggle but I try. And most importantly I try and keep my mind from worrying which is very hard ☺️ I don’t know what meds you’re taking but if you feel they’re not helping you must talk to your doctor/cardiologist.
I too find the fatigue difficult to manage I have found a pattern of chest pain followed by fatigue and exhaustion leaving me unable to do anything for days then followed by feeling better with no pain for a couple of weeks. I find it difficult to rest when I’m fine! With regards to the relationship with cardiologist this is a difficult one I have found that I have been seen or spoken too by different doctors /cardiologist numerous times, and have been under 3 consultant cardiologists since diagnosis. So it is difficult to get continuity, and I’ve felt very dis heartened at times which is why this site is so important. This is where I have gained much knowledge and support. It would be great to have lots of consultants and doctors with expertise in this difficult condition but we’re not there yet.
My MVA is 'presumed' as the queue for the definitive diagnostic (angio with provocation) up here in Scotland is years long - and I keep being put to the back of the queue as whatever it is has responded extremely well to low-dose beta blocker+300mg aspirin once a day. I have other heart conditions and the beta blocker+aspirin+lifestyle adjustments seems to keep the worst under control.
What seems to be the best way for me to manage it all is keeping a detailed daily log of vitals including ox-sats, room and outdoor temperature and humidity levels, when symptoms happen and what seems to resolve the symptoms. I keep mine on the laptop as a spreadsheet but also printed out for daily recording.
I had spasms, pain, debilitating fatigue and an increasingly frequent need to use my sublingual nitroglycerin until my doctor added Ranolazine to my medicines. It did not make me well, but it made daily life better and I was able to resume a modified version of my regular exercise routine which I'd had to discontinue. I wish you the best in finding a balance that works for you.
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