Hi, I am struggling at the moment with MVA. I get this mostly at rest and sometimes at night in bed. I have been diagnosed for quite a few years with this but it stayed in the back ground, until last December then it really came back with all guns blazing. I had a had few weeks in October after my medication was increased of rest bite from pain. I get quite breathless, hot and sweaty, headache and tightness before the severe pain starts in my chest. It has disrupted my life so much lately. The meds I am on are, Ranalozine 500 twice a day, Isosorbide 120 mg, Amlodopine 5mg, Ramapril and a few others.
I get really low and fed up with this interrupting my daily life, as I get severe pain most days ☹️. I am under my GP who is quite understanding of this condition, the cardiologist is not brilliant.
Sorry for moaning on but is this normal for this condition.
Thanks in advance
Barb 🤪🤪
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Barb959
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I also have good and bad days, and have found that I feel better initially with new medication but the symptoms always come back and are unpredictable happening at rest with no identifiable triggers. I recently started ranolazine to add to isosorbide and amlodipine and was feeling good had no pain or breathlessness for weeks but it's come back again and I'm feeling breathless and exhausted in between chest pain. I'm waiting to see cardiologist again.
I'm trying to stay positive, because it could be worse and I try to focus on what I can do and make the most of the times when I feel ok, I'm not In constant pain and the pain is not severe but my life has changed I've had to take early retirement and sometimes feel like such an invalid it does get me down.
My cardiologist says it's a matter of getting the medication right so I'm hopeful this will happen in time and I can have longer spells of fee!ing good and a better quality of life
I would urge you to see your GP asap because your pain is everyday and severe I think you should be assessed. I had a bad attack of angina in September when the pain was everyday and waking me at night and my GP sent me to A & E and I was diagnosed with artery spasm which is linked to MVA.
It is a difficult condition to manage and live with but severe and constant pain should be assessed by a doctor.
I struggle too. I have vasospastic and microvascular angina. I live with frequent daily episodes of angina at rest that keep me awake at night.
I had a 10 day hospital stay in November for treatment with IV GTN and morphine to get my vasospasms under control. The second hospital admission in 2019.
Living with pain is very tiring and finding the resilience to keep going very challenging.
The angina can be unpredictable and relentless.
I have had the good fortune of seeing some world leading specialists into MVA and vasospastic angina but mine remains largely poorly controlled.
My local Cardiologist and GP are very supportive.
I am on high doses of Diltiaziem which is the usual medication prescribed for vasospastic angina.
Also Nicorandil, Amlodipine, isosorbide mononitrate extended release, nitrate patches, statin and clopidogrel.
I use oxygen at night for my pain.
The balancing act is between my blood pressure, my heart rhythm and heart rate. I am maxed out on most medications.
Other strategies I use are a TENS machine and hot water bottles. Yoga, Tai Chi and Mindfulness meditation. Getting out and volunteering.
I also have access to a Cardiac psychologist and attended a Pain management programme.
Learning to learn with the emotional pain our physical pain causes is very important.
I am looking forward to the summer when I feel better.
I would ask to see a Cardiologist who is willing to work with you to find the best treatment possible that will work for you or is willing to learn. Please don't be told there is nothing they can do. As a group of patients we need support to live as well as possible with this condition.
There is alot more research going on and the awareness of the MVA and Vasospastic angina is growing. Next step is that we need is effective treatment.
Thank you for a informative response, it is great to hear about how this effects people and how they get through it.
My GP mentioned something about a pain clinic in Liverpool, he said we could look into that if the pain continues to be as severe and debilitating.
I do use my bike for exercise I got a stand for it so it’s like an excessive bike now, and I try to get out for walks when it’s not to cold. Role on summer like you say.
I do appreciate your advice and very knowledgable information you pass on,
Great to hear that you are able to exercise. It is really important as it improves the function of the inner lining of the blood vessels the endothelium. Best of all it's free!
I can exercise too, though I have to wear a wet suit when I go swimming because of the cold.
Please don't feel you are alone. There are lots of us with MVA or Vasospastic angina in the forum and we are all here to support each other.
I hope your appointment with your GP goes okay. I would encourage you to go to a Pain management specialist if you can.
I am glad that you have had two helpful replies, including from Milkfairy who has great expertise and has done much to help herself live with the disease.
I suffered from MVA intermittently (then diagnosed) for 10 years until November 2017, since when it has been more or less continuous - but fluctuating massively and unpredictably - except for a one month period of remission. It is an awful disease and, in my experience, drugs help but do not adequately control the symptoms in bad periods. I am very sorry that you have joined this unwelcome club and it is hard to adjust.
It seems to me that MVA is a name for a syndrome covering multiple pathologies, and that individuals can respond entirely differently to drugs and so forth as well as experience the disease differently.
Everybody reacts differently to drugs, therefore: for me, the key drugs are 10mg amlodipine and added 180mg diltiazem. Amlodipine and diltiazem both belong to the same class of drugs - calcium channel blockers - and you are likely to struggle to persuade a doctor to prescribe both but it may be beneficial to have both. I persuaded my cardiologist to add diltiazem to my existing amlodipine after reading from multiple sources that diltiazem is the preferred drug for MVA and learning also that it can be combined with amlodipine. This may not work for you at all.
Does GTN spray provide any relief? It doesn't for me but, fortuitously, I have found that a little red wine or port can take the edge off pain and shortness of breath. Counter-intuitively, I have found that gentle exercise can sometimes help also, presumably because it helps open my blood vessels: just walking around a room might ease your symptoms on occasion. When walking for exercise, I can find it beneficial to undertake a gentle warm-up walk first before trying anything more vigorous.
All that said, I have found a treatment that has been life-transforming for me and reversed the disease symptoms to a considerable extent. This treatment is a non-invasive therapy called external counterpulsation (ECP, also called EECP). Before I underwent ECP treatment, MVA was often a disabling condition for me and I too often found myself in hospital or in an ambulance. I have now been able to resume my previous activities, within limits, and to release to others the NHS resources that I used to take up. What brings me to screaming frustration is that ECP is barely available on the NHS because it is not NICE-approved, as there is no relevant data. I believe there is an NHS unit in Bradford, but your overstretched CCG - if you are in England - will surely not wish to pay for an unapproved treatment. Therefore, if you do not have a deep pocket or private medical insurance, it will be extremely difficult to obtain treatment. I know of one MVA patient who travelled to Turkey to obtain affordable treatment and, like me, subsequently described the treatment as life-transforming.
There are further caveats to add. Firstly, ECP does not work for everyone and there is no information available as to which patients it will help or as to what proportion of patients will be helped, nor as to the extent of the benefit. Anecdotally, though, most MVA patients respond. Secondly, a standard ECP course is 35 hours of treatment and the maximum treatment per day is 2 hours, so a 35 hour course takes about 4 weeks. For very many, the logistical problems will be challenging to say the least.
For light relief, if this link works, it will take you to a folder containing a couple of photos and a video of me undergoing ECP. (Trigger warning: you will see a man in leggings - not a nice sight!):
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