I’m 36 years old. Mom of 2 precious children (7 and 5 years of age). I was an extremely active elementary school teacher but I am currently on disability since being sidelined by chronic angina in 2015. I am writing to share my story about living with coronary microvascular disease. It is notoriously difficult to diagnose and even more difficult to treat and unfortunately I have experience with both aforementioned.
I was diagnosed via symptoms in 2016 after finally finding a cardiologist in Canada who has a special interest in CMVD. This diagnosis came after two years of being dismissed, mistreated and turned away by doctors and specialists. I have no history of diabetes, hypertension, obesity or CAD. I do; however, have a family history of early heart attacks and a history of high stress.
I experience daily chronic angina (radiates to arms, shoulder blades, jaw, wrists and sometimes teeth), palpitations, shortness of breath, crippling fatigue, dizziness, near syncope, headaches and various other diffuse aches and pains. My symptoms began after an extremely complicated and traumatic pregnancy in 2013. Initially, my symptoms were exercise intolerance (which was a red flag considering how conditioned I was), fatigue and serious anxiety. Then I would experience periods of diffuse chest discomfort and fatigue. These symptoms would come in waves, lasting for weeks then disappearing for months. Eventually the time between episodes became shorter and shorter. Every time I would present to a doctor or an emergency room, my symptoms were always deemed benign after cardiac workup showed nothing of significance. Then one day in September 2015, the chest pain came and it never left.
My angina and related symptoms can present at rest, during exertion, times of emotional stress and even by projecting my voice; however, the most troublesome symptom I deal with is what I refer to as “the delayed effect”. The delayed effect happens when I have over done it and not paced myself, not scheduled in the required rest stops or have done an activity that I know will cause symptoms (folding laundry, singing, vacuuming, etc). I will experience some discomfort during an activity but if I have overdone it, my symptoms will escalate hours after the activity has been completed and stay present for hours, days and even weeks later. I refer to it as a bad “flare” or “cycle”. All of this makes it difficult for me to gauge what is a safe activity for me and what is not until it’s too late.
Diagnosis has been an arduous road for me. As we are becoming more and more aware about the flaws in our tests for cardiovascular disease (especially how they relate to women’s heart health), I am hoping that by sharing my story and advocating for women’s heart health, fewer women will have to endure the years of dismissal, brow beating and disbelief that I endured (and still do at times). It is absolutely critical for women to advocate for themselves and ensure concerning symptoms are not dismissed EVEN in the face of negative test results.
My diagnosis was based primarily on symptoms as none of my cardiac work up has shown anything “significant”. That being said, I do present with ST elevation in lateral leads on ECG when my pain is bad, I have a mildly enlarged heart, my left atrium is moderately enlarged and I have borderline high indexed biventricular diastolic volumes. At at 36, I consider those findings significant but apparently I’m the only one. As I mentioned, I was very active, so many of my findings are attributed to many years of exercise and a well conditioned heart.
My life has become quite limited and accommodations need to be made for almost every aspect of my every day life. I obviously can’t do things I once loved to do like running or any type of cardio workouts, no bike rides, swimming or skating with my kids. Walking outside can be tricky as I cannot walk uphills, in cold, in wind or heat.
Not only can I no longer work, but I cannot even volunteer in my children’s classrooms for fear I will overdo it; or simply cannot commit due to the unpredictability of the disease. I miss out on the little things in life like singing with my kids, playing with them, baking with them and all the other little things people take for granted.
I am a huge liability. Professionally,socially, physically and emotionally. I’ve seen many relationships fizzle and die because of my inability to commit. My marriage struggles and many of my family members are unsure of what to think when I look “ok”.
I’m currently taking 180 mg of Diltiazem and wear a .4-.6mg Nitro transdermal patch. Both of which do little to nothing to quell my symptoms. My BP and HR are low at baseline so a lot of the “go to” meds have been problematic for me. I’ve spent thousands of dollars on alternative treatments and functional medicine doctors only to be no further ahead. Ativan appears to work for me and relax my vessels enough to sometimes help me get out of a bad cycle of pain. Other than that, I have not found anything that helps to ameliorate my quality of life.
To thrive with a disease like this, I have found I must be very aware of, not only my physical self, but also my emotional self and ensure I am staying as positive as I possibly can. In doing so, from my couch, I have become a heart warrior and an advocate for women and heart disease, especially for women with coronary microvascular disease who tend to be more at risk for being under diagnosed and under-treated.
Thank you for sharing your story. As a woman with CMVD, I’ve experienced much of what you write about – the dismissal by doctors, the lack of understanding by friends and family ( I look fine), the immobilizing chest pain, the grinding fatigue, the inability to enjoy activities that I used to do, and even the delayed response after overdoing it. I hope that better treatments are discovered for this disabling condition. Best wishes to you.
An excellent account of Microvascular Angina and it’s debilitating nature!
I have had Coronary Artery Spasm (Prontzmetals variant) for many years now and have recently had the added diagnoses of Coronary Microvascular disease and microvascular angina confirmed by Coronary MRI scan with Adrnidine.
CMVD and MVA are both very under-recognised, under-diagnosed and under-treated conditions. Sadly neither conditions are quick fixes either so some of the traditional interventional cardiologists don’t like dealing with them.
That said, the conditions are often thought of as benign but research has shown this is not the case so treatment for and management of the condition to prevent it from escalating, wherever possible, with rapid and effective care available when it does, is very important.
I am very blessed in that I have been cared for by the world specialist in these conditions and have learned a great deal from him but I am very aware that these conditions are still being ignored and dismissed as benign by some of the less up to date Cardiologusts.
Research suggests that Coronary Angiograms can view only around 10% of the Coronary tree, Micrivascular angina can affect any combination of the remaining 90% and can affect one area or many areas of the microvasculature – no wonder perhaps that it can be so disabling.
The microcirculation is only comparatively recently coming into view – literally – so many conditions – like Microvascular Angina – are now able to be seen on specific tests and can now be visualised and documented.
Medicine is primarily a science so now that technology can actually see and quantify the problems of the heart’s microcirculation, perhaps more studies will be done and recognition, dusgnosis and treatment of these vonditions will improve.
There are a couple of excellent Facebook support groups for these conditions -they are well frequented and managed and that might be of help to anyone else with these conditions and particularly to those newly diagnosed and looking for information and answers
B,
I feel your pain, I was diagnosed 35 and my children were 7 and 5. Almost seventeen years later I am still living with the spasms. I have had several heart attacks and a right coronary artery dissection during a catherization while spasms were occurring. The wire caught and tore about it 75% of my artery thus, I needed bypass. As the years go by just like you the time with no episodes grow shorter. I used to only have spasm in January then it was just two or three months of winter. This year I have not had a month where there have not been spasms. I am on diltiazem 180 2x a day, nitro as needed as well as several others.
I hope for your better health as well as empathy and support from your family and friends.
I run a support group on Facebook if you belong. The name is Prinzmetal Angina support group, you are more than welcome to join. We have almost 800 very caring and supportive members.
Lots of love and prayers sent your way
I too have dealt with this going on two years and have been on multiple medications and none were working. After my latest heart catherization in June, 2018, which came back clear, I was placed on Ranexa and I can finally say that I feel better than I have since this all started. It has pretty much completely relieved me of the angina. I know everyone is different and not all medications work for everyone but wanted to share this so you could speak with your cardiologist about it if you desire
It’s been two years since my heart attack. One year since I was put on Ranexa and it was a life altering medication for me. I suffered for over a year with debilitating spasms. I too have CMVD and Vasospasm’s I cannot take nitrogen because of migraines but the Ranexa has also helped with the migraines.
I am going through this as well, I have to agree with you on the renexa it has done so much for me. I’m on several other medications as well and I have had some flare ups but nothing like I was.
Heart Sister,
I was just turning 41 with kids ages 4 & 9. Active. No physiological reason was the stance for 9 mo. Yet symptoms don’t lie. How we feel is part of the clues when the pesky micros don’t exactly scream their presence on typical testing!!
Keep discussing. Our. Heart sisters (and brothers) will benefit as clinical awareness broadens through our paralleled experiential knowledge helps bridge gaps in diagnosis and management.
I posted your patient perspective on our public Facebook info page… Non-Obstructive CAD: Coronary Micrivascular Dysfunction & Spasms. It helps to spread the word and gain a foothold in how others look at invisible illnesses.
Thank you for advocating for us all!
❤️Annette Pompa
Thank you. I have been suffering with the same symptoms and feel I have been underdiagnosed. Your disorder describes my problems too.
Recently I called my cardiologist to report increasing episodes of angina symptoms, I was told they were most likely anxiety and to take a valium. It did not relieve the radiating pain of course but I didn’t want another unnecessary trip to the ER so I just did my best to ignore it and try to relax. A new symptom has also started as well; struggling to catch my breath.
After two weeks of misery I decided to ask for an EKG. They sent me to the ER for blood work, etc. The results came back normal and didn’t show a heart attack. They increased my diltiazem and told me to stop taking metoprolol then go see my cardiologist. I do have RBBB, pvc’s, pac’s, and other benign rhythm issues, along with “spastic” angina. My family history has early death from heart attacks.
I have an upcoming appointment with the cardiologist but do not want to be dismissed again. I have yet to be tested for blockages, and have only had the typical stress test, holter monitor, and echocardiogram after 5 years of suffering.
I worry that maybe I am making a big deal out of nothing but I feel like it is more that they think it’s anxiety and that I exaggerate because I am a middle aged woman who otherwise is perfectly healthy, except for a bad back. I have no quality of life with my flare-ups either. We sit and are lucky to do that some days.
So I want to ask for an angiogram and any tests that will reveal narrowing or blockages. How do I convince my cardiologist to do more testing who does not feel I am at risk of an impending heart attack, even though he did diagnose the angina? That would at least give me something to work with and not feel like I am batcrap crazy. My family is dying from being underdiagnosed and I don’t want to be another casualty. I have a life to live, grandkids to play with, things to do and places to go. Right now none of that is possible.
I can’t help but feel like I am a liability as well, with nothing to contribute economically, so why should they try to keep me alive. That is so unfair but that is what it looks like, that I have no value so let me die soon. With my insurance and living in a remote area I have very few choices for doctors.
What can we do to get the care we need in a broken healthcare system?
I too have had this debilitating disease since 2009 a few weeks after back surgery….I was trying to get my strength back & walk up our steep hill when my first symptoms began with pain in my chest. I’d had A ruptured disc 5L & constant pain in my Sciatica. After the surgery, I was so concerned I wouldn’t get back to the work I love- I’m a COTA & work with children with disabilities.
After constant angina in my chest, left arm, jaw, and B/P all over the place I had 4 trips to the ER. Sent home with no findings & made to feel it was in my head & I was taking up time from someone who really needed help.
I had a heart cath. (Negative) & sent home at 11:00 pm that night told it might be CMVD but not sure & only an Cardiac MRI would confirm.
I was given many medications to try & none helped. I couldn’t walk to the next room I had such extreme fatigue. I had to rest after taking bites of food. It sounds crazy but it’s vety real & frightening- not to mention humiliating when treated so poorly by hospital staff, nurses & Doctors. Even family wonders when you don’t look terrible.
I found on the Internet that Cleveland Clinic could do an MRI of the heart. We live in Ky & my husband drove us 9 hrs to get there. It was with the best decision we made. The Drs are amazing there & treat you so well- every person we encountered did. The MRI of the heart with Adenosine found I wasn’t getting oxygen to the middle of my heart due to Cardiac Microvascular Disease. Finally confirmed, I was given Ranexa & Imdur ….that helped & I got to get back to a more normal life. I still take them twice a day- Ranexa 1000 mg & Imdur 120 mg x 2.
Greateful to have found what helps. I can work part time. I do yoga several times a week & it keeps my B/p down.
I hope this helps someone. Thanks for sharing. I continue to have occasional angina & cant tolerate extreme heat or cold…Ryaunads Syndrome pops up then. All in all I’m doing so much better than I was 9 yrs ago. Don’t know how long it will last.
Thank you so much for your story Stacy, sounds very similar to my own story. It seems like its a daily battle living and functioning with MVD.
Im so sorry to learn of others who walk a similar path. That being said, we MUST be trailblazers here. We MUST insist that what we experience is REAL and harbors RISKS. There are so many non contentious and sometimes down right ignorant medical professionals out there. If we don’t speak up and make our voices heard, nothing will change. I encourage you to share my story, talk about my story and heck…even print it off and take it to appointments with you if you are one of the many being not heard.
If you struggle in silence, hop on Facebook and type in Non-Obstructive CAD: Coronary Micrivascular Dysfunction & Spasms. Check out the info posted. Send a Message to the page if you are in need of like minded suppport. We see you. We hear you. We believe you. 😘
Ten years of symptoms and five years hunting for an expert. Untreated I moved into Heart Failure with Preserved Ejection Fraction. I am the bookend to her story. Untreated. Seen as malingering.
Me too, HFpEF/Diastolic Dysfunction. Now IV NTG no longer accessible for cycles I cannot break at home- so overall decreased QOL, but try to remain as positive as I can. I LOOK GOOD, all docs say, not how I truly feel. Lost my career, and spend a good deal of time “couch surfing” now.
Thanks for sharing your story. How long it takes to diagnose such rare conditions is what is so frustrating. I have a immunological disorder. Very low Igm and Iga. I suspect the immune system disorder has something to do with the trigger of this. I began to suffer symptoms of chest pain a few years ago. It seems that you are ignored if it is unseen eg if you look fine and a test is negative. Treating people with respect and understanding is vital in getting to the bottom of any health condition. I hope that more research can be done to support the people who suffer CMVD and CHD as I have already lost my dear sister to this disease. I believe there are many passionate Doctors who are good listeners, it will be important to us all to create awareness of this unseen disease process so that improved treatment begins to occur in hospital settings around the world.
This sounds just like my story. I used to be athletic- a swimmer all my life. Then in my mid 20s I started having pvcs and weird numbness in my left arm after exercise. A few years later, I started to experience shortness of breath and dizziness when lifting heavy objects, going up inclines or after exercise. Doctors said stress/anxiety. I’m now 36 and had to recently quit my job as a teacher. I go through periods of weeks to months where I can’t get out of bed. I’ve been to 5 cardios and had all the testing come back negative. As a result, doctors are very condescending and ask me why I can’t just accept a clean bill of health and move on. I wish I could move at all. I’ve been to a therapist, put on anti-anxiety meds, and I’ve seen a pulmonologist and a neurologist. I’ve tried nitro patches. Nothing works except laying in bed for weeks and waiting to feel slightly less dizzy so I can live my life again.
Thank you so very much for taking the time to write this article. I am new to this disease and am still learning how to manage day by day. I was lucky to get diagnosed by a provocative Cardiac Catherization at the Mayo Clinic in Minn. this past May. Until then I had been in and out of the ER with debilitating chest pain and shortness of breath only to be told my heart looked very healthy on the standard tests. I was told I had anxiety and acid reflux. The problem with this was that I knew it was my heart. It was clear as day. My husband and I decided not to waste any more time with local cardiologists ( University of Pennsylvania, Jefferson ) and head straight to Mayo. Sure enough I was diagnosed with CMVD and Endothelial Dysfunction. Since then I have been working with one of the few experts in this disease to get a cocktail of medicines on board that will be successful, but have not seen much improvement. I know from my heart sisters that this can take time. To say that this disease can be debilitating is an understatement. I struggle to do the most basic things, driving, showering, walking, etc… I have good moments, but need a lot of nitroglycerin to get through the most basic day, along with my other medicines. I too have children 15 and 12 who need their mom. I am hopeful that things will improve but also fearful that they may not. I am 45 and just got a wheelchair. I hope that your article will get the attention it deserves.
Me too, am a male but this sounds all to familiar to me. I’m 38 now but have been dealing with chest pain since my 20’s. Finally found a cardiologist that believes I am experiencing these symptoms and treats me accordingly. He said it could be possible cmvd but my chart says prinzmentals angina. Haven’t pushed for more testing yet as long as he’s treating me properly I’m okay with it.
Hello, I’m a male too, 28 years old and have experienced frequent chest pains and have been diagnosed with irregular heart beats. Cardiologist dismiss my symptoms. What treatment is the Dr. given you if I may ask? Thanks.
I am much like you. I have low BP, Pulse, Cholesterol, etc. Taking heart meds make my blood pressure go too low. Dilitazem helped me a lot but I had severe side effects. I am only able to take nitros. I stopped going to a cardiologist because he doesn’t understand it and we have already tried all the meds. I get my prescriptions from a GP. My condition continues to worsen but all my workups are normal. My EKGs are the only clue that something might be wrong. I have been dismissed too many times and have been laughed at, told this is in my head, and also that this is benign despite the large number of women with this condition who have had heart attacks and are in dyostolic heart failure. Such a frustrating journey and I guess part of the reason I don’t go to a cardiologist is that I have given up. I take my long acting nitros and the short acting when necessary and hope that it is enough “treatment” to avoid heart failure. My prognosis from Cedar Sinai (where I was finally diagnosed by going out of state) was heart failure in 10-15 years if not treated and I am unsure that I am able to treat it enough. My condition continues to worsen. My baseline pain is higher with every “flare up.” I still do a lot but I pay for it and I can’t do as much as i did a year ago. Maybe one would look at me and think I live a pretty normal life but not compared to the person I was and the continued decline, I hope that this condition can be taken more seriously by doctors and medical schools that teach doctors. I think this is much more common and much more dangerous than most give credit for.
I started with symptoms 12 years ago. Wasn’t diagnosed until 3 or 4 years in when my third cardiologist saw spasms on my second cath. Dr #1 said “it is a noncardiac problem but here’s some sublingual nitro. If it helps take it.” This was after positive stress test showing lack of oxygen but cath looking good. Dr #2 said “maybe if you don’t swing your arms when you walk you want have shoulder pain”. This was after another positive stress test showing lack of oxygen which led to some kind of CT with contrast that showed clear arteries. Dr #3 (at a research hospital) did a cath and saw spasms, so he diagnosed me with CMVD and CAS. I got tired of driving two hours just to get meds when nothing is really changing so now Dr #4 is local, and seems to believe the diagnosis. We just play with the meds as needed. He does a stress test every so often which is always positive for ischemia but then amy follow up testing will show clear arteries, so am sent on my way, usually with new or adjusted meds. I am able to work and light exercise most days but have what I believe is cardiac pain daily, different levels. On the bad days I have indescribable fatigue and have trouble doing much of anything. I look fine and most days can fake being fine. I guess I have gotten used to the whole thing.
As I read your post, all I could think was, you are me!! And the fatigue is right up there with the pain. I could tolerate one or the other but not both together.
I haven’t been diagnosed yet, but my electrophysiologist thinks that is what is going on with me and is treating me for it. I’m on my third medicine now, but have a lot of problems with the medicines because of low blood pressure. I have chest pain, irregular heartbeats and shortness of breath with any exercise. My cardiac tests have all been “mostly” normal except that stress tests show ST depression. Six months ago I’d park at the back of my parking lot at work to get more steps in for the day. A year ago I could hike 5 miles with no issues. This morning, even walking to the restroom at work made my chest pain start. My daughter is a freshman in college and Ive missed out on most of the neat family events. I used to love baking. Last night for our good day at work today, I bought refrigerated cookie dough to fix, and even that left me laying on the couch exhausted and with chest pain for two hours. We’re scheduled to go to Florida in two months, and I can’t get a handicapped parking tag I’m not sure I’ll even be able to walk to the beach. This has been totally discouraging, and has pretty much taken over my life, even though it just started 4 months ago.
Your story is common as I am now finding out. I was lucky in that I got a firm diagnosis of CMD through an angiogram with adenosine perfusion, 5 months after my minor heart attack and start of chronic daily chest pain. However, drug therapy is challenging and 4.5 months since diagnosis and still no relief – a progressive worsening of symptoms if anything. Primarily chest pain, even when sitting, and shortness of breath, inability to function normally. The “delayed effect” you describe is precisely what I experience too. Too much walking down the halls or trying to help with dishes one day, and the next day….and for days and sometimes weeks afterwards…. the chest pain is much worse. I am 55 years old. Fit, slim, non-smoker, low cholesterol. Was climbing mountains only 3 months prior to this – now I am thrilled if I can walk once around the yard. This has been a very sudden, life-altering and different to treat condition. I wouldn’t wish it upon my worst enemy.
First of all, I want to say a big “thank you” and a big “well done” to Dr Gupta for his website and blog.. When so many microvascular angina (MVA) patients have suffered from non-diagnosis and worse for years, it is fantastic that Dr Gupta acknowledges the disease publicly. I am really hopeful that Dr Gupta and this blog will help advance the cause of microvascular angina sufferers.
I concur with the comments above, and it would be redundant for me to detail my medical history in view of the earlier comments, but I will provide a summary. My disease was intermittent and undiagnosed for 10 years until it became continuous in November 2017, though still with good and bad episodes. At my worst, it was a struggle even to make a cup of tea and I was filled with pain, shortness of breath and unpleasant sensations; as well as angina and shortness of breath I have had lots of neurological-type sensory symptoms. I have felt completely horrible throughout my body.
My illness brought my career to a premature end, but I shall for ever be thankful that I was financially able to retire.
I have had numerous blue light journeys to hospitals in Leeds, Harrogate and Northallerton, consistently with ischemic ECG abnormalities (ST-depression, T-wave flattening) and with 2 normal angiograms over 10 years. Why has it been so difficult to diagnose a patient with cardiac ischemia but non-obstructed coronary arteries? Well, finally I diagnosed myself from my unusual pattern of angina, namely that it occurs both at rest (especially between midnight and 2a.m.) and, sometimes, upon exertion. When I have angina and shortness of breath at rest, exertion sometimes improves my symptoms and sometimes worsens them. Finally, I found on the internet an angel in human form called Dr Robin Roberts, a cardiologist based in Wimbledon who provides a treatment called external counterpulsation, and that treatment has been life-transforming for me. (In case my current NHS cardiologist reads this, I do have to confirm that he arrived at microvascular angina but, for reason of the course of events, after I did so. As he knows, I am in fact very appreciative of him because he is a very careful doctor, who at all times has listened carefully and thoughtfully to me, and undertaken appropriate diagnostic investigations; I don’t criticise him in the least).
So grateful for seeing this story and all the other comments of those like us who have gone through similar experiences. Maybe not all exactly the same, but enough that there is no doubt when some Doctors are telling us it’s stress or anxiety and we know it’s not it’s very frustrating. I have had chest pain and lightheadedness for 14 years. After 10 years of tests all within normal limits I suffered a mild heart attack. I passed out just before getting into a bath, thinking I was just tired and catching a chest cold. In emergency one intern asked me what I thought it was. I said I thought I had a blockage. My Dad was 39 when he had his first bypass and died at 45 waiting for his second. They gave me an angiogram the next day not expecting to find anything. I received 5 stents. Thinking that was the cure I needed I was so excited. Until I returned to work and ended up being carried out and taken by ambulance after feeling my chronic symptoms of chest pain and on the edge of fainting. I had to fight for a woman cardiologist as the others I had seen after my stents said my heart was fine and could not explain the chest pain – other than mental health. After years of exploring that option, I was confident that was not the cause but grateful for the therapist I had found through it all. To have a cardiologist who listens is amazing! To know there are others like me is comforting. Thank you so much!!
Thank you for sharing your story and advocating for us! I was 36 when I got diagnosed with coronary microvascular disease and went through so much struggle to find a cardiologist who would not dismiss me because most of my heart tests were normal.
I always try to spread awareness of this disease and hope hat women don’t stop pushing for a diagnosis when symptoms don’t go away!
Thank you for sharing your story! …. Yes, I have Coronary Microvascular Disease, too. I was diagnosed at Emory University in 2015 after suffering a stroke in 2013. My Coronary Microvascular Disease symptoms started a few weeks after my stroke. It took a long time, a lot of tests, and seeing a lot of different specialists to find *one* cardiologist who knew of this condition. I wish more cardiologists (and related specialities) were aware of the volumes of updated research on Coronary Microvascular Disease that is readily available for them to read.
I am 62 and hate reading about all the young ones with this terrible condition. And your story describes brilliantly how it is to live with this disease. I had a small HA 18 months ago but when they did angiogram they found beautiful arteries, their description and told troponin must have been a false positive. Less than two weeks later the angina started mild at first and then became debilitating and because of clear arteries and as Prinzmetal and CMVD is supposed to be so rare apparently it couldn’t be that, told reflux, oesophageal spasms or stress. My nightmare had began and I had to fight to get treated and eventually one cardiologist willing to say vasospasm and treated me so I received some relief to the worst of the fatigue and the angina that hit me many times daily, 17 at one stage. Cardiologist was only visiting area and when I returned with ongoing symptoms new cardio said no, it’s not your heart and the nightmare started again. Still being mucked around with a final diagnosis but finally have a cardiologist who is now just about willing to diagnose CMVD but at the same time saying as I haven’t responded better to meds there is probably nothing he can do for me, but no experimenting more with meds no advice on what that means for me. He is actually the fourth cardio I’ve seen and so my GP has given me a referral to top specialist in Australia for more assistance. Others have mentioned improvement with Ranexa but unfortunately that is not available in Australia. I hope I can get my life back, there is more I want to give and do. My wish that answers can be found for your those young ones struggling with this condition as it is so unbelievably debilitating. Apart from the previous year having Polymyalgia Rheutmatica from which I had recovered I had been well, always ate a proper diet, exercised regularly, never smoked, never did drugs, good cholesterol, good BP, but did carry some excess weight even though not being an overeater. Some family history of Heart disease. CMVD obviously needs for research.
Thank you for sharing. I had a STEMI LAD 3 years ago. I had continuing bouts of chest pain afterwards with no explanation. Nine months later I had an angiogram with Acetylcholine. It was discovered that I have coronary artery spasms.
Wow, when I read this I felt like I was ready my own life story! A teacher who has fought with CMVD for 6 years now, I am now not able to teach full time anymore. I get everything you described! The unpredictableness if this condition affects every area of my life. Thank you for sharing this! Too many times this get misdiagnosed or swept under the rug. I pray together we can spread better awareness!
So much like my story. I thought I was going crazy after 6 long years and no doctors believed me. To healthy to have heart issues. I was so happy to see that I was not alone anymore. I traveled to Boston’s Heart Clinic, MA, Houston. Cleveland Heart Clinic and finally Cedars in CA to finally get someone to listen to me. Though I feel better some days, I still have days and weeks. Now that I found the Heart group but 500+ people can’t all be wrong. I also had to retire from my daycare job. I live a very quiet day most of the time. I could not get disability due to me being self-employed. I still try and stay busy and less stressed. Thank you for sharing.
I have a similar story as well. I first got symptoms in 2008 after an unknown febrile illness. I knew there was something wrong with my heart, but didn’t know what and the cardiologists I saw all said either nothing wrong or nothing significant to cause the symptoms I was having. They suggested depression, anxiety, etc. I diagnosed myself with CMVD (I am a nurse practitioner) in 2012 after attending a lecture about women’s heart disease but couldn’t get any of my colleagues to believe me. In 2014 I had an episode of Afib RVR and a new cardiologist, who told me, “there is nothing wrong with your heart, at your age (53 then), you should see internal med, your are much more likely to have a cancer causing your weakness and fatigue than heart trouble.” Dutifully, I went to see Internal Med, who wanted to put me on antidepressants, you know, cause there is nothing wrong with my heart. I kept searching for a cardiologist who would listen and finally in 2016 was officially given the diagnosis, but when I didn’t go back to normal on one small dose of isosorbide dinitrate, was once again told to see a counselor, must be stress. A new cardiologist and cardiopulmonary exercise testing and an echo in 2017 and got a firm diagnosis of ischemia, impaired pulmonary circulation, hypertension and mitral regurgitation. I was put on Ranexa and bystolic and increased doses of isosorbide. I was finally able to sit up straight and make a short trip to the grocery for bread and milk again. By January 2018, even though much improved, I still had no exercise capacity whatsoever, had started to cough with the least bit of exertion (have since seen two pulmonologists and prescribed several asthma inhalers that did nothing) and still remained with severe fatigue with very slight provocation such as taking a shower, chest pressure at rest and severe shortness of breath with walking at a normal pace despite the meds. My cardiologist told me he was at a loss, didn’t know what else to do for me, his colleagues didn’t know either, so he was referring me to the medical school to see if someone there could help me. I waited 5 months for a very arrogant cardiologist to tell me it was reflux, esophageal spasms and maybe I was depressed. That made me upset which triggered the now almost constant cough. He asked if that was the cough I had mentioned and I said yes, then he looked at last year’s echo and said it was because I had diastolic dysfunction, added furosemide 20mg to my meds and told me to come back in a month, which was a three month wait to get that appointment. I didn’t go back. I saw my new internal med doctor instead, who is a gem, by the way. I am now taking daily totals of Aspirin 81mg, bystolic 10mg, furosemide 40mg, isosorbide dinitrate 120mg, spironolactone 25mg, ranexa 2000mg, and sl nitro when needed and I still can’t walk in the park with my family due to shortness of breath, coughing, aching behind right shoulder blade and fatigue. I am once again in search of a cardiologist and feel like I’m looking for a needle in a haystack. It is so frustrating. I’ve lost my job, my career, my friends and some of my family because I look good and nobody wants to hear that I can’t walk or do the things I used to do. Sometimes I push myself to do things and I always get the delayed effect that others have mentioned. It’s good to see I am not alone or crazy or a hypochondriac.
I also and a mid level health care provider, until 2012 when had to retire and give my career up. All of ur post so true !! And since I LOOK GOOD, colleagues, cardios, family get frustrated too. Most of my frustration come for being a patient now and my “medical teams” often do not believe what I tell them my problem is. Coded during provocative Cath in 2012, severe spasm of LAD- then they actually agreed I had real heart issues. Very frustrating and has opened my eyes to the patient side of this illness.
I’m both overwhelmed and saddened by the similar stories brought forth in comments of this brave article. So many instances where doctors are engaged but are quick to discredit, misdiagnose or even ignore. I don’t blame doctors personally, they are only human like the rest of us. You don’t know what you don’t know. Awareness of this disease is the key and that’s the message here. Advocate and educate. I’m one of those who needed education. Too many times I sides with the multitude of doctors instead of my wife. It pains me to no end that I didn’t have her back. I simply didn’t know any better and I felt those doctors knew best. I was wrong. She knew something was wrong, she felt it. She still feels it, and at the I was wearing rose coloured glasses. Please hear when I say don’t make the same mistake I made. Listen to your loved ones. Advocate for them. Question your doctors. You only get one chance in this life.
Thanks for sharing everyone, especially B. You’re a brave beautiful soul and your message won’t be lost.
I can relate to most of these experiences.
Mine started around 6 yrs ago i became unwell with repeated chest infections then diagnosed with rheumatoid arthritis . My inflammation markers were so high i couldnt start my rheumatoid meds for six months.
Each winter thereafter my chest infections got worse. 2013 i was very ill i couldnt breathe properly and the fatigue was horrendous i saw a chest consultant and had bloods taken my bnp bloods came back suggesting heart failure which the chest specialist dismissed out right!
Fast forward 2016 my eye sight got so bad i am now registered sight impaired down to inflammation again.
2016 17 my chest remained same but i was getting more out of breath and fatigued. Diagnosed with fibromyalgia.
2018 my gp repeated bnp blood test which came back even higher by this time id had an admission to A&E with what i thought was a heart attack as the pain and other symptoms were so bad. The ecg showed changes so i was given asprin and morphene then kept in for obs . Sent home as not a heart attack. Only to have same but even worse episode the following week. Given angiogram which was clear the dr said coronary artery spasm microvascular.
I was given gtn spray and sent home.
Continued having bad chest pain back and forth to gp who rang cardiologist who put me on isob monatrate and bisopol beta blocka
The difference to my fatigue was instant from the beta blocka !
Ive since been in and out of hospital tweaks to meds
Attended cardio rehab and specialist nurse was fantastic she told me i need to be seen by a cardiologist and medication sorted properly and need the whole of my condition looked at with the heart as well as she believed there is a link and especially the heart failure blood tests positive and the symptoms.
Its frustrating as the chest consultant dismissed my heart being an issue but did nothing to support me in getti g any answers for my symptoms.
I wont give up on getting proper help and treatment this condition has robbed me of my life that was i was an active person loved my horses and rode 5 or more times a week worked out with pt trainer and worked full time as well as helpi g with my grand children. Now i spend most of my time in bed ! Every plan is usually broken as i dont know how ill feel. The chest pain is daily at rest or on exertion on days i feel better i end up doing more so then have an even worse day or two following.
Ive emailed prof Kaski for a cardiologist in North East England who knows about CAS and Microvascular but no reply as yet. So im waiting to see a cardiologist my gp has referred me to.
Im 54 now and id like to live a bit more actively so i dont end up a fat old woman !
“Me too”
My life change 4 years ago. I am 58 years old now.
I experience daily chronic angina (radiates to arms, shoulder blades, jaw, wrists and sometimes teeth), palpitations, shortness of breath, crippling fatigue, dizziness, near syncope, headaches and various other diffuse aches and pains. My symptoms are more present at rest.
I was diagnosed with non-obstructive CAD (Micro-vascular angina) after 1.5 years of living with this crippling condition and many, many tests *diagnostic of exclusion*.
Relief came from 360 mg Diltiazem ER and 0.8 nitro patch every day.
Even with medication, accomodations have to ve made on a daily basis. So many things, I can no longer do (any cardio demanding exercises, even Yoga triggers my symptoms. Forget vaccuming, brooming, any arm movements required in cleaning and in having a good time). Hot /Cold weather, humidity are triggers!
Getting diagnosed was such a rough experience. I saw 5 cardiologists before being taken seriously and treated.
Thank you Dr. Gupta for your open mind!
What about clinical trials for MVD? I know of WISE and the CMD trial that Cedars-Sinai is doing. Are there any others?
https://clinicaltrials.gov/ct2/show/NCT00000554
https://escapecmd.com/
Thank you for this blog. I am 49 years old, a Dietitian that works in a hospital, eat a plant based diet- which has helped my angina, and have a low BMI of less than 20. I suffer from angina daily that occurs with exertion, temperature extremes, lack of sleep and stress. I’ve had numerous tests- all negative, but do have a pacemaker for sick sinus syndrome. Because I look healthy and am very petite, not to mention my profession, I’ve been dismissed as having a heart issue, other than related to my pacemaker. I’ve found that Coenzyme q 10 has helped my energy and episodes, along with a very low fat plant based diet. I have not yet found a cardiologist that understands MVD, but would love to hear of one in Canada, where I live.
Hello Sue, Just wondering if you found a specialist in Canada that is willing to listen and treat your symptoms. I am a registered nurse who is unable to work due to debilitating chest pain. Cardiac work up is negative. So drs are saying symptoms are not cardiac related, could be reflux or anxiety etc. Looking to find a clinic/ cardiologist to help with a diagnosis and treatment plan. I am willing to travel anywhere in North America to find answers.
Any insight into your care would be appreciated.
Thank you
Many thanks to all of you and Dr. Gupta for this article. My story of angina for the past 6 months is in all of the stories above. Ranexa, Imdur, Metoprolol, and Nitro keep it under control but it is disheartening to continue to have to take Nitro and stay in bed the next day or two after normal activity like grocery shopping.
I cannot get my cardiologist to give me a diagnosis but at least the medications help. You are all giving me hope that I am not alone. It sure makes it easy to shelter in place with this COVID-19. Stay safe and well.
Thankyou for these stories, comforting to know l not on my own as l have felt like this since moving away from London . I have has cmvd for 28 years and do have a good cardiologist in London it was dignosed 28 years ago under syndrom x ,but has now progressed , lts left me with disabling condition as using a wheel chair as l have my husband and daughter caring for me ,
I have numerous very bad attacks not being able to breath chest pains l had 5 small strokes ,the last one a few weeks ago in hospital and has left the cmvd worse so in bed at the moment as trying to avoid hospital because of the COVID as lts bad at the moment . Feeling isolated as here doctors don’t know enough of this condition , and the hospital in London has shut at the moment for outpatients because of the COVID . I’m on a cocktail of tablets and taking 720 mg of zentard etc .
Hi I also hve this condition, and have found lately, especially this past year, my Microvascular Angina is becoming worse..i always suffered chest pain, left arm and jaw discomfprt..now i find im having bad RIGHT arm pains .. and more breathless of late, and so tired… Which hospital do you attend in London..I go to the Royal Brompton heart nd lung hospital. .
This thread has been very helpful. I see that it was started over 2 years ago, but thanks to all that continue to post here. I am a 49 year old male that started having symptoms over 10 years ago. After several angiograms, I finally had the last one 4 years ago that found reduced blood flow and was diagnosed with microvascular angina. Like many of you, I have daily symptoms. There are only rare days where I have limited symptoms now. It has progressed over the years and is now very debilitating where I have to be careful with everything I do. I try to bike ride as much as I can, and on some days I get several miles in but not pushing very hard. I’ve been an active person my entire life. I’ve lifted weights since high school, but can only lift very light weights now. I stay very fit and eat very healthy (mostly plant based/vegan). Another comment on here mentioned low IgM and IgA values. That is very intriguing to me as I also have very low IgM as well…well below the reference range (IgA levels are normal though).
I want to take some time and describe my symptoms so that it may help others. Pretty much every day I have the following pain/discomfort (all on the left side): chest, shoulder, jaw, arm, wrist, and even my left thumb hurts. I have tingling/numbness down my left arm and into my left hand. I have significant fatigue every day as well. I’m usually not short of breath, but that symptom has become more prevalent recently. One other thing to note is that I also have slightly elevated NT-ProBNP, so my condition appears to be progressing towards heart failure. I am desperately trying to reverse that, but I don’t think our healthcare system knows how to effectively treat this. I also have a rapid heart rate that has progressed over the years. I am on a beta blocker for that and can’t miss a dose as I get chest pain and shortness of breath if I forget to take it on time. This condition causes so much anxiety as you think each day may be your last. It’s a very sad way to live, but I try to be thankful for every day regardless. I know there are others that share in this condition and feel the same as I do and I know there are obviously millions of others with worse conditions…so keep your head up 😊
I’ve also been to Mayo and I’m an active patient there, but so far the cardiologist has not taken my symptoms seriously despite my angiogram results. They offered an ECG and an echocardiogram, which I did of course, and both came back normal. My ECG’s have been typically normal, and I keep a KardiaMobile device at home and check it consistently. I have a history of high blood pressure and take an ACE inhibitor for that and it has been well maintained.
I also still see the cardiologist that did my angiogram at the ER. Since he diagnosed me, I still seek guidance, but unfortunately his resources are limited and I think he relies on trial and error.
I have 2 girls ages 14 and 9, and it’s extremely frustrating to not be an active dad for them. It’s a horrible feeling. Also family doesn’t really understand the condition so they just think it’s in my head.
I also wanted to post the meds I’m on.
Metoprolol
Propranolol (as needed) – yes I take 2 beta blockers
Isosorbide dinitrate
Lisinopril
Nitro sublingual (as needed)
Norvasc (I’ve had vasospasms)
So lots of meds and I still have symptoms, but I will say the nitrates do help with the pain and the beta blockers are necessary to keep my heart rate lower.
Thanks again to all that posted here.
I was diagnosed with Prinz Metal Angina in 2006 following an attack which really scared me. Investigation showed it was not ordinary Angina and my doctor came to the conclusion it was PMA as nothing else seemed to fit the symptoms. I have been using GTN pills to ease the symptoms ever since and although the attacks are not frequent there seems to be no logic as to when they will occur.
Recently I had a very severe attack lasting over 3 days. With Covid-19 I did not want to go to hospital so worked through it. Having spoken to my doctor (not the same one who originally made the diagnosis) following the attack, she put me in touch with someone at the local health trust. The nurse I spoke to over the telephone suggested that I didn’t have PMA at all but that it was related to an intestinal problem. I don’t know where to go next as I could have been taking medication for over 15 years which I didn’t need or, alternatively, could be in the situation where my condition is assessed as something lesser than it is.
I guess I need help but from where?
I am reading these stories while wide awake at 2:30 AM because of all these same symptoms. I have acute pain that lasts for hours and comes in intense waves. I was in the ER a week ago.I am so tired. The pressure and pain in my jaw and arm has not stopped for a week. I hate the words stress and anxiety, I think they are weaponized against women in general. This started after a 4 year battle with chronic GI problems that were resolved after multiple hospitalizations, 6 or 7 doctors, one of whom kicked me out of the practice for insisting that there was something wrong with me. There was. Diverticulitis. I had ten inches of my colon removed and a partial bowel block fixed. I learned then that it is so easy to dismiss women in pain. The findings were always “unimpressive” and “insignificant .” I lost 4 years of my life to that one, And this pops up several months later. I have had it for 7 years. It never ends. It is a nightmare. I am so tired. I take Ranexa, nitro, salt for low BP, Midordrine for low BP. I have asthma and allergies which makes everything worse. The last flare of this was triggered by anaphylactic reaction to carmine. I am sitting here drenched in sweat, feeling like someone is sitting on the left upper part of my body. I am drinking copious amounts of water-three liters in the past hour trying to keep my blood pressure up because I also have POTS. I am surprised that some people got help at Cedar-Sinai. I was there last Wednesday night in the ER, writhing in agony, sitting out in the. parking lot for an hour clutching my chest while the EMT guys were giving me nitro and trying to get me help. The triage nurse says to me “we don’t have a Cath here.” What am I supposed to do with that information? My pain was hitting ten. I had to beg for a saline IV. I can’t keep doing this. I have a new doctor whom I like but he is a UCLA doctor and EMT’s couldn’t take me there because Cedar Sinai was closer. Today I saw my Cardiologist. I am getting the catheter test. He is evaluating cardiac bridging which may contribute to spasm and pain. I am at the point where I don’t know what the point is anymore. This is no way to live. Covid has made everything worse. While in the ER three different people proudly proclaimed their unvaccinated status like their stupidity was a badge of honor. People drop you because you are unpredictable and you look okay even when you feel awful. Family drops you. Some of my sisters think I am faking it or am a hypochondriac although they have LQT with pacers. How are we supposed to live? I went from being active, walking miles everyday, learning new languages and traveling, weight lifting, pilates and yoga to a blob of pain just barely living. I was a working artist and now drawing fatigues me-something I used to do for relaxation. I feel likeI am just occupying space and this will never end. I am 62 now. My husband, a retired physician, is almost as frustrated as I am. He looks at me with such love and fear in his eyes, my heart breaks for him. He is frustrated too. As I have been getting worse these past weeks, he is losing weight and looks exhausted too. If only for him, I need this to stop. I am so lucky that I am loved by such a loyal and devoted man. Many people in my situation have been abandoned by their spouses. I am comforted by all of your words. I wish I could hug you all. Thanks for listening to me somewhere out in the ether. Good luck to us all.
Don’t lose hope!! That said, I understand your sadness, feelings of dread and uncertainty, and pain. I now feel I am one of the lucky ones, as a heart attack while at rest at age 56 after a summer of chest and jaw pain helped cardiologists take me seriously. I was a runner, biker, vegetarian with low cholesterol, blood pressure and heart rate. Cardiac cath showed no obstruction, but further testing led to the diagnosis of cardiac microvascular dysfunction. Since 2019, I’ve developed a host of arrhythmias as well, and a pacemaker is being discussed. I have been through 5 cardiologists in 2 years; each time there was initial interest in my case followed by a “what more can I do” vibe coming from the docs due to the difficulty balancing my low heart rate and low blood pressure with my need for more medications to control symptoms and prevent another heart attack. The fatigue, not knowing you’ve “overdone it” until the next day, symptoms that seem to come out of nowhere…I’m so glad (and sad) to learn there are others out there like me. I also have Lupus, which some docs believe is at the root of my heart issues. I had to retire from my job this past August when the arrhythmias became worse. I can’t count on myself, and I can’t be depended on by others. I thought I was crazy when yoga triggered symptoms…I mean, Yoga!? Walking keeps me sane. I don’t walk fast, and I don’t do hills, but I am grateful for the trees and rivers and fresh air, and it helps.
Hi all and big hugs I started getting chest pains over the years and doctors said it’s muscular, in December 2021 went to a@e as I was catching my breathe walking up the stairs doctor said it could be angina, I had z CTscan and it revealed I had a severely blocked right artery, I seemed to have more pain and lucky enough my cardiologist put me on a study to see if I got mcvd, cardiologist did a thorough check of my heart and yes I got it, I just feel relieved that’s its not all in my head, loads of medication, sometimes such severe pain in my heart feels like I’m going to die, I’ve had to change jobs, it is so frustrating not being able to do what I used to do I cry a lot plus perimenopause and I’m 50 . Thinking of you all xx
Hello,
I also live in Canada and I have no quality of life. I can only walk a few steps because the heavy, crushing weight on my chest and upper back, close to neck, is too much to bear and I must sit down. I use a wheelchair to move about my home. I also experience pain in the upper back with the crushing. At it’s worse, it feels like an ax handle is pressing down hard on my upper back and I must lie down flat immediately for some relief. I can’t even sit upright or stand tall because I cannot overcome the pain the pressure piled on me. I used to get random chest pain but for some reason that has settled but the other symptoms remain. The heavier it is, the more short of breath I am.
I went to Cleveland Clinic in Ohio and I was diagnosed with microvessel spasms in my heart. I paid out of pocket for appointments and tests. I am desperate for relief and my cardiologists in Canada said to look at non cardiac reasons for chest pain. I have to wait months for a follow up appointment at Cleveland Clinic and I still don’t have medication to treat my spasms. Meanwhile I have requested CC fax all my reports to my GP and I dropped off my CC medical reports to my GP. I am hoping to get referred to a cardiologist in Canada who can give me medication for coronary microvessel spasms. I’m still waiting for non cardiac tests in Canada for further investigations. I also self referred to a neurologist at Cleveland Clinic for autonomic dysfunction.
All my symptoms started a few weeks after I had a mild covid infection. I’m vaccinated and had no side effects from vaccines.
I forgot to mention that I cannot sit or stand with correct posture because of my symptoms, I’m hunched over. I feel like an alien from another planet and gravity is too strong for me. I have non cardiac symptoms like internal vibrations 24/7. Legs feel like lead when I walk a few steps.
I have found good websites for more information. International Heart Spasms Alliance and INOCA International.
Dr Gupta’s videos on youtube are also helpful and explained in a way that patients understand.
Thank you for sharing your story. I live in Montreal,Canada and have been struggling with the same symptoms for 4 years or more .I have been diagnosed with anxiety,depression,reflux and muscular pain . Finally.I have seen 3 cardiologists and went to the ER at the cardiology institute.I was told that all my ECGs were normal,my stress tests as well . I had a rhubidium PET scan also normal so no microvascular angina was diagnosed . The last cardiologist told me to use the nitro spay and exercise 30 minutes /day .I am very tired ,wake up several times at night with chest pain and palpitations. I have daily chest and arm pain and almost faint ! I was wondering if anyone has a specialist in Canada they can recommend.I am getting desperate, Thanks to all for sharing. Happy holidays.