Not sure this is the right community but wasn’t sure which to go to for advice.
I have had a heart ultrasound done which came back normal findings, and had an event recorder given to me for 4 weeks. I did notice on my findings that the T waves were dropping instead of going up..
Had a letter on Saturday saying they have found Monomorphic Ventricular Ectopic Beats and ‘in view of this’ wanting to do an exercise stress test for exercise induced arrhythmias including cardiac Ischemia.
Has anyone else had Ventricular ectopics and had this done, if so what was the outcome ?
Thanks in advance, advice on here is all that’s keeping my mind and hope going at the moment so Is much appreciated
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Kezmaz
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What are your symptoms, please? I have had irregular T-waves and ventricular ectopics but don't want to offer any comments without knowing what is happening to you.
Symptom wise daily I feel constantly light headed most days, mainly when I stand from sitting (BP is fine though) or move around, I feel like I keep having to take deep breaths in to feel like I’m actually getting air I’m my lungs and overall just feel exhausted.
I will then randomly have the bad ‘funny episodes’ where i will suddenly go really hot then freezing cold, clammy, feel very disorientated, fast thudding in my chest, pins & needles , my body feels so lifeless that it’s an effort to get words out.. sometimes I will spasm mainly in my left side (this has only happened twice) which causes my legs to shake. This is happening pretty regular just lately... I’ve had 2 flu’s so I don’t know if that’s upset anything.
The bad episodes have all been, apart from 1 time, while I’ve been laying in bed.
On the event recorder my heart was going from from resting 55bpm to 130bpm just by standing up and walking 5 meters to my kitchen, this is where I would almost faint over and over. It was then pointed out that my T waves were dropping quite a bit which may be due to lack of oxygen apparently ?
Overall I’m just really not feeling great at all.. although I’m trying hard not to let it, it’s controlling my life at the moment.
Obviously I am not a doctor and obviously I can't diagnose you - so everything that follows may be 100% wrong and please rely on medical advice.
I have microvascular angina and your description of ischemic T-wave abnormalities and ectopics was evocative of some of my experiences. Some of your further description is also evocative of my experiences of MVA, namely:
- bad episodes in bed, my bad episodes very reliably occurring most often between 1am and 2am;
- feeling short of breath during attacks, struggling somehow to breath and to speak - hard to explain in full but accurately described as a "changed sensation of breathing" (do you get this?)
- shaking, especially of my legs
- pins and needles
- funny episodes
- viral infections seem to cause subsequent MVA flare-ups.
I would be interested to know if you have any gastrointestinal or oesophageal disturbances going on, as these are associated with my MVA.
Looking at this Kezmaz, there is an uncanny resemblance between your symptoms and mine. I fear that you may have MVA, which is really unwelcome.
I need to find time to write to you at greater length and point you to the MVA info on the BHF website. I hope also that wonderful Milkfairy, another MVA sufferer will chip in as she knows a lot.
I should add that there is a condition known as vasospastic angina or previously "Prinzmetal's disease" that is kind-of related to MVA and may co-exist with it.
Firstly thank you so much for taking the time to reply, and in such detail.
Everything you have explained down to every detail is exactly what I have been experiencing. The ‘changed sensation of breathing’ is a very good way of describing it. It’s almost as though there just isn’t enough oxygen in the air all of a sudden.
Something I hadn’t mentioned was the constant feeling of fullness I have, it’s as though I have just eaten a 5 course meal all of the time. I have absolutely no appetite and when I do make the effort to eat i can only manage a third of what my previous portions were a year ago.. although this may be completely irrelevant it’s also something that is concerning me at the moment and I have lost 4 stone since September (I was classed medically overweight prior to this but wouldn’t have considered myself to be)
I guess time and experiences has helped as I have slowly trained myself to now stay calm during which is definitely helping, but I am still scared for my life each time.
May I ask, are you now on any medication to treat/prevent MVA and if so is this helping?
Our symptoms are so similar, it is hard to believe that we don't share a very similar disease.
I have had a lot of oesophageal and gastrointestinal problems associated with my MVA. The reason may be that microvascular disease is systemic, but also there are neurological interactions between heart and at least oesophagus via the vagus nerve (I have done hours of research) and it may be that, or it may be something else. My GI problems have included delayed transit constipation, bloating, soreness, sometimes nausea. However, I did not lose much weight. Of course, it is possible that microvascular disease has taken a different cause in you. But, as you know, weight loss is a symptom of cancer, and that possibility should surely be investigated....?
As to medication, my local cardiologist (while saying he didn't know what was wrong with me but would treat my symptoms), doubled from 5mg to 10mg my daily dose of amlodipine, a drug that I was on for blood pressure. Within days, the severity of my night time attacks lessened, to my huge relief. The symptoms previously had been so bad that on several occasions we dialled 999 (which turned out to be useful because the paramedics will take an ECG during or very shortly after an attack), but after the doubling of the amlodipine, I have almost never dialled 999.
Amlodipine is a calcium channel blocker and a London cardiologist later prescribed a second CCB, diltiazem, which further helped.
GTN spray (aka nitroglycerine) which customarily eases angina is counterproductive in me, i.e. its immediate reaction is to increase my chest pain etc. This is typical of one group of MVA patients - but there are other MVA sufferers who respond positively to GTN. Have you tried it? There are also other ways of delivering nitrate, including GTN patches and various nitrate-releasing tablets. I don't do any of them.
What really really helped me was a treatment called external counterpulsation (ECP). It is a crime that this is barely available on the NHS - there is I believe one NHS ECP unit in the country in Bradford and there is just one private provider, I believe. ECP is not NICE approved and there have been no good studies on its use to treat MVA (as opposed to angina more generally). You would find it exceptionally hard to persuade your hard-pressed ccg (if you live in England) to fund ECP.
I must state next that I know for a fact that ECP does not help all MVA sufferers but the private provider, Dr Roberts, said that he obtained "close to a 100% response" with MVA patients. Curiously, the most profound and enduring result of the ECP was a dramatic improvement in my gastrointestinal health. However, it has done much for my angina: I had a top-up course of ECP about 5-6 weeks ago and, after a week's delay, felt fabulously well and fit (whilst still slightly symptomatic), in fact I felt so well that I could have danced for joy. My adorable young grandson gave me gastric flu last week and that has prompted a minor MVA flare-up, which is a bit dismaying.
So, I have had my ECP treatment at Dr Roberts' clinic in London, which is hardly convenient to my home in North Yorkshire. His treatment is very expensive (about £10k for a standard course of 35 hours) and a standard course takes either an hour a day over 7 weeks (35 working days) or, after an initial ramp-up, 2 hours a day over a bit under 4 weeks. So, to undertake the treatment with Dr Roberts, you need health insurance or a deep pocket as well as the possibility of attending his clinic daily over a period of about 4 or 7 weeks. And after all that, you don't know how your body will respond ......
Before ECP, I sometimes felt dreadfully, dreadfully ill with this debilitating disease. I often felt under house arrest with very restricted activities and very restricted (i.e. almost non-existent) social life. Life was a miserable existence: my body full of pains and unpleasant sensations, light-headedness, shortness of breath and even a horrible false sense of the space my body occupied. The drugs helped take the edge off the worst of the angina and shortness of breath symptoms but the ECP gave me my life back - with limitations and almost always with at least a bit of an angina niggle.
You of course might find drugs a great help. From what I have read, calcium channel blockers and especially diltiazem are the normal first line drugs of choice for MVA. Perhaps they will help you enormously. The literature recommends beta blockers: my experience here is that metoprolol would ease a severe acute attack and is also very effective at easing palpitations and may help a blood pressure spike but that the chronic baseline symptoms did not seem to be touched by it.
There are other drugs that some MVA sufferers find helpful. One is ranolazine, which I was prescribed but discontinued because it disagreed with me. Another is nicorandil, which I have not tried.
I also take: enalapril, which I have been taking for 20+ years for blood pressure but is supposed to be beneficial for MVA; mini-aspirin (75mg); atorvastatin. Statins by the way inhibit the synthesis of the compounds ubiquinol/ubiquinone and vitamin K2, so (as recommended I believe by the FDA) I take ubiquinol supplement. Vitamin K2 has lots of functions, one being to ensure proper calcium metabolism: a deficiency apparently causes calcification of the arteries. I take supplements containing one form of K2 called MK-7 and eat duck liver which is a rich source of another form of K2 called MK-4. (The "4" and "7" refer to the length of a chemical side chain on the K2 structure).
Oh yes, if you eat sugar and refined carbs, please stop doing so. You are probably damaging your blood vessels.
The literature reports that exercise helps ameliorate MVA symptoms, but that is problematic if you feel too ill to exercise. Nonetheless, I have largely managed to follow a self-imposed regime of walking for at least 30 minutes a day, even if the walk has been a slow struggle.
More to follow about medical options ....
And don't forget to make an appointment with your GP about your weight loss!
Hi, I have ventricular ectopics with MVA and have been advised not to worry about them. Would be good to know what they advise for you and what your symptoms are.
After a 3 day monitor many years ago I was told me palpitations were "Harmless ectopics" and to ignore them. No one ever explained where they come from. I don't have any of your symmptoms.- well I did have until several of my tablets were changed, especially the breathing and speaking problems. That was one specific tablet.
Thankyou for your reply. As far as I recall, it is suggested that some members of NICE and other organisations have a conflict of interests. But it's good that you're conducting your own research, making your own enquiries, and making your own decisions.
Have you any evidence for the 'suggestion' that some members of NICE and other organisations have a conflict of interest?
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