by Carolyn Thomas ♥ @HeartSisters
Dr. Juan Carlos Kaski, Head of the Cardiovascular Sciences Research Centre, St. George’s University of London in the U.K., explains an unusual cardiac diagnosis that I happen to share: Inoperable Coronary Microvascular Disease (MVD).
When I was at Mayo Clinic five months after my heart attack, cardiologists there referred to MVD as a “trash basket diagnosis” – not because the condition doesn’t exist, but because this disorder of the tiniest blood vessels in the heart is so often missed entirely. A correct diagnosis usually happens only after all other possible diagnoses are thrown out. It’s far more common in women and in people who have diabetes. It’s treatable, but can be very difficult to detect.
Traditional cardiac tests – even coronary angiography, widely considered the ‘gold standard’ diagnostic tool in identifying potential heart attacks – usually miss MVD entirely.
Dr. Kaski explains that 40% of patients suffering the severe chest pain of MVD have “normal” angiograms. Unless a cardiologist has experience with cases like mine, these patients can be misdiagnosed – often over and over again – and sent home despite truly debilitating cardiac symptoms similar to your basic Hollywood Heart Attack.
According to Mayo Clinic experts:
“The narrowing of these very small blood vessels in the heart means they can’t expand properly when you’re active. As a result, you don’t get an adequate supply of oxygen-rich blood to the heart muscle.
“This inability to expand is called endothelial dysfunction.
“This problem may cause your small vessels to actually become smaller when you’re active or under emotional stress. The reduced blood flow through the small vessels causes chest pain and other symptoms similar to those you’d have if you were having angina or a heart attack.”
On his video, Dr. Kaski discussed the difference (and possible similarity) between another non-obstructive diagnosis, Prinzmetal’s Variant Angina (a spasm disorder of the coronary arteries) and MVD.
What triggers coronary microvascular disease is not known, but cardiologist Dr. Noel Bairey Merz of Cedars-Sinai Medical Center in Los Angles suggests that high blood pressure during pregnancy might predispose some women to the condition.
(Not coincidentally, I too was diagnosed with pre-eclampsia during my first pregnancy – typified by spiking high blood pressure. And we now know that women with pre-eclampsia are up to five times more likely to develop heart disease compared to women whose pregnancies are uneventful).
Typically, the narrowings in small blood vessels are caused by fatty plaque, the same stuff that clogs bigger vessels where most heart attacks begin, explains Dr. Bairey Merz. But in MVD, plaque doesn’t form a mound or bulge. Instead, it uniformly coats the inside of these tiny vessels.
This reduces the space for blood flow and makes the arteries stiff and less able to expand in response to exercise or emotional stress. She explains:
“Women are relatively more like to suffer from plaque erosion and distal coronary embolism, compared to relatively higher rates of plaque rupture and proximal thrombosis in men.”
Currently, Dr. Bairey Merz believes that the best diagnostic test for detecting MVD may be something called coronary reactivity testing. This angiogram-like test lasts 60-90 minutes and allows doctors to see how very small vessels supplying the heart respond to different “challenges” from medications.
She recently added this comment to an article called “Myocardial Infarction Re-Defined“ in the American College of Cardiology’s In Touch blog:
“A majority of patients with microvascular coronary dysfunction also have atherosclerosis evidenced by intra-coronary vascular ultrasound (IVUS).”
See also:
UPDATE: Diagnostic tools used to identify coronary microvascular dysfunction
Misdiagnosed: Women’s Coronary Microvascular and Spasm Pain
No Blockages: Living with Non-Obstructive Heart Disease
My Love-Hate Relationship with my Little Black Box (how wearing a portable TENS unit has reduced my use of nitroglycerin for MVD chest pain)
How Women Can Have Heart Attacks Without Having Any Blocked Arteries
Small Vessel or Coronary Microvascular Disease – from Mayo Clinic
Watch this 5-minute video about Joan Jahnke of South Carolina who went to Emory Heart & Vascular Center to have her MVD appropriately diagnosed and treated.
♥ Watch the conference speakers (11 presentations, about 20-25 minutes each) attending the 2019 INOCA “Meeting of the Minds“ meeting on non-obstructive coronary artery disease in London England in this series of videos.
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NOTE FROM CAROLYN: I wrote much more about coronary microvascular disease in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).
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Heart Sisters 
54 WM Recently diagnosed with MVD after going afib in post op… these last 2 months have kicked my a$$. Y’alls site was informative. Thanks
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Hi, I am just home from an admission to the Bournemouth Hospital (UK). I am so shocked at the lack of understanding/consideration of MVD/CAS. I was told to go home and sit out the coronary symptoms I was brought in with, IF they occur again.
I am extremely lucky to be a patient of Prof K Kaski ( he really is the best). However, I live over 15 miles away from St George’s (the professor’s practice) and in an emergency situation he is inaccessible.
Thank for this site which is proving to be a mine of information. I am coming to an understanding of the chronic nature of the disorder(s). What worries me the most is the real ignorance of the nature of the disorder among professional cardiologists.
I hate admitting this but I do have a real fear of having an actual heart attack (I have 5 stents for CAD as well as the other 2 conditions. Unfortunately, it is extremely difficult to discover any evidence-based information regarding heart attacks and MVD/SPASM.
I now intend attempting to become my own expert and about to follow any links etc given on this site and any other sites I come across.
Incidentally I have not met a doctor yet (I have seen many) who reacts positively to the idea of patient research. Hey ho, we are not educated to the very superior level (academically) as most consultant cardiologists.
Thanks again for such informed comments and all of the had work that goes into them.
Christina Daly
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Hello Christina and thanks for sharing your unique story here. I too am shocked that hospital staff would actually say out lout to a patient: “go home and sit out your coronary symptoms.” What? WHAAAAT?
Thank goodness you found Professor Kaski! I too was diagnosed locally by a physician at our Regional Pain Clinic who (happily for me!) had done a one-year fellowship studying MVD/CAS in Sweden. It’s like having a world expert right in my own neighbourhood!
And you are absolutely on the right track: from now on, your only job is to become the world expert on your condition. This is critically important when you are diagnosed with a condition that, sadly, is not universally understood by healthcare professionals.
It’s very common to feel very scared about what’s going to happen to our heart down the road – especially in the early months. It can really help to seek out a counselor, pastor or therapist to talk to about what you’re experiencing.
You’ll be relieved to know that not all physicians are unhappy about their patients doing ‘research’ on their condition. I suspect that almost all of them are actually unhappy when their patients bring in mountains of trash they’ve printed off the internet (or seen on Dr. Oz).
Here’s what I’d say to those doctors who object in general to having a well-educated patient: I would not even dream of buying a stove or a fridge without going online to learn as much as I could about features, benefits, repair incidents, reliability, cost, etc. – so why on earth would I not go online to learn as much as I could about something REALLY important – like my health?
But there’s a lot of woo-woo crap out there. The secret is to teach yourself which websites have credible information backed up by genuine science. I’ve found the best are academic/university/cardiology sites. That way, when you discuss what you’ve learned with a physician, he/she can immediately see journal references, etc. Best of luck to you!
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Thank you for your excellent reply. You are undoubtedly right when you suggest there are some very ‘different sort of sites out there’ and that is one of the reasons this site is proving to be such a godsend.
Unfortunately, being told to sit out my cardiac pain is something that has happened before (2 years ago at the beginning of my journey). As things turned out I ignored that advice (thank goodness) and after much wrangling I was given my 4th stent (which I had been told was an impossibility as I was ‘fixed’ and couldn’t possibly need another stent).
Well, that was then and I am still here to tell the tale so to speak. I want to let you know that every single piece of information provided here, has helped me on my journey, researching my own needs. I truly hope I might be able to pass along anything I find along the way and possibly help someone else to feel more empowered regarding there health and wellbeing.
Your site was instrumental in sending me in the right direction and helped me to get in contact with Professor Kaski, without whom I would be lost. Thank you again. Wouldn’t it be wonderful if we could make a real difference and get the facts out there into the public arena? Maybe then health professionals could become more enlightened and those of us with such complex heart disorders would be a little bit safer.
Thanks to everyone reading this and let’s keep on striving for better knowledge for everyone.
Christina Daly
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♥ ♥ ♥
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Carolyn, thanks for your site. I just ran into it.
I had mitral valve replacement in December (on my birthday!) I have tried to learn all I could about it and the heart failure I have.
Is there a place on your site for people that have had open heart surgery?
Thanks
Gloria
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Hi Gloria – what a birthday present you had in December! I don’t have specific posts on open heart surgery but I suggest you check out the WomenHeart online support community. It’s free to join and post a question or comment to thousands of women living with all forms of heart disease. Best of luck to you…
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Carolyn, I’ve just found your page and blog. Great information! I’m fortunate: my chest pain is only like a sore muscle. I hope it stays that benign.
Recently I was awakened by pain that went from chest up into my shoulder and right arm. I keep talking to my cardiologist about this and the palpitations that wake me up at night. In the past three weeks, he has done a 24 hour monitor and an echocardiogram, which showed me in “normal” ranges.
I mentioned the possibility of microvascular issues, and he rolled his eyes. Then I mentioned that I had had an ablation 9 years ago for atrial tachycardia, and he said, “Oh, your file doesn’t show that” (he wasn’t my specialist, then). What he has forgotten is that I met him about 8 years ago (a year after the ablation) in the ER with symptoms of a heart attack. No “evidence” that I had one. 13 years ago, I went to the ER with what they called a “cardiac event” — which sure felt like a heart attack to me. The tachycardia showed up after that.
I do not want to overreact, but I don’t know how to get a specialist to take me seriously. My family history is replete with cardiac problems on both sides. I live in the San Antonio area, and it’s unlikely that I can get to Mayo.
Any advice would be greatly appreciated, and thank you.
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Hello Rebecca, and welcome! I’m not a physician so of course cannot offer advice on your specific case. I can tell you generally that any doctor who “rolls his eyes” at a patient’s question is not my kind of physician, even if the question seems far-fetched! But I’m not surprised at all that he had forgotten meeting you in the ER eight years ago (considering how many hundreds, maybe thousands of different people with heart symptoms that he’s met over those years).
Right now, you don’t know what is causing your symptoms, and so much of medicine is simply eliminating what it isn’t. While (luckily!) the majority of palpitations turn out to be benign, with your atrial tachycardia history, you just need to keep carefully monitoring symptoms. Try starting a symptom journal for the next few weeks, noting the date/time of each episode, what you were doing at the time, what you were eating in the few hours leading up to the symptoms, etc. Show the results to your doctor – sometimes this kind of written record means that between the two of you, you can start seeing patterns that solve the mystery. Best of luck…
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A Symptom Journal is a GREAT idea! Will do, and I appreciate your response and enlightened advice. Thank you so much for helping people! I’ll stay tuned to your blog.
Wishing you the best of health.
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I find your writings very timely. I had my first heart attack in 2013 at 29 years old, then a year after, my second. My 2nd was deadly but I survived. A year after that, an angiogram was performed and ruled out coronary vasospasm. I am under heavy meds but I hate when after all the meds and less stress, my cardiologist would assume that I am suffering from costochondrinditis or GERD if I still complain of chest pains. Thank you for your article.
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I started with symptoms at 41 in 1991, after several emergency visits Dr Edwards, a cardiologist from Kaiser Permanente, told me I had spasms of micro artheries and he treated me with oral magnesium. At the time it was hard to find. I was hypotensive, had migraines, normal weight and was Dx with rheumatoid arthritis (RA).
Years later, I noticed that my ER visits were related to me stopping the magnesium for over 20 days because of my GERD (acid reflux) symptoms. Now, 25 years later, I am hypertensive, a bit overweight, elevated cholesterol, RA under control, have migraines, have small veins all over my legs, unexplained bilateral headaches, sensitivity to cold (72 degrees is painful for me – legs, headches, hands and knees). Multiple ER visits with very scary chest pains, scary because as a nurse I knew what they were, but in ER they were dismissed several times as false alarms. I have been told I have Raynaud’s syndrome but never had a definite Dx.
Now I see there are many of us.
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I cannot believe that I was such a –and I mean VERY— strong woman, working 12 hr days, riding up to 7-8 horses per day in Dressage training, lifting and carrying countless hundreds of pounds of horse feed.
And now at 69, a non-smoker for 4 years, I have difficulty walking 100 feet to feed 7 horses. Or water my garden for 15-20 minutes, without having at least one “Angina” chest pain and take Nitro under the tongue. No one yet has told me that I have MVD, but surely after 2 Heart Caths which showed a “Super” heart, what else can it be? I am Diabetic since 2 years, and suffer from high blood pressure and AFib. None of which were ever present while doing my horse business, up to 28 horses on the farm at once.
I am going to try to find a Pain Management person who can help me, and not just more Isosorbide plus Nitro. Maybe the patch? Don’t know yet. Headed back to the Cardiologist next week.
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Hi Carolyn, I am new-ish to your blog, about a month. I had a heart attack about 6 weeks ago, and had a heart cath at the hospital. It showed a “pristine”, my doctor’s words, heart, but over to one side, there were 2, what he called “inconsequential” small, marginal veins with a clog at their tips. He said, no need to stent, doesn’t know why I had a heart attack, and doesn’t think it will happen again. He put me on Plavix, a statin, aspirin, and a channel blocker,(in case it was spasm).
So, here I am wondering what all of that means. How can they be inconsequential, and yet I had a heart attack. Let me add that the EKG did not show the heart attack. It showed up in my blood work, and so I was admitted into the hospital.
As I read your blog, it seems like you have done your homework, and might be able to explain some of it to me.
I have had high blood pressure since I was 19, am 59 now. I am thin, exercise daily, eat healthy, no drinking, no smoking. Do you have any information that you believe would help me to understand my situation more? It is hard to hear that they don’t know why I had a heart attack, and they don’t believe it will happen again. How could they know for sure. Thanks for the ear.
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Welcome, Bea – glad you found this site! I had a very similar cath (they suspected “stent failure” – love that term! – because of my ongoing symptoms after my heart attack) but the interventional cardiologist who did my second angio said “NO, clean as a whistle!” and wrote “non-cardiac” on my chart. (Wrong!) It was weeks later that I was ultimately correctly diagnosed with coronary microvascular disease.
I’m not a physician so cannot comment specifically on your case, but I can tell you that anything that causes a heart attack is hardly “inconsequential”. I can also tell you that the fact you were fit and healthy likely means you have strong collateral arteries (my own cardiologist suspects that I survived my heart attack because I’d been a distance runner for 19 years). He also said that running likely postponed my cardiac event by a decade or so. Sometimes, there is no definitive reason (we’d all love to have concrete reasons!) High blood pressure, by the way, is considered a significant risk factor for cardiovascular disease. I’ve met heart attack survivors who were triathletes, vegans or physicians – all very surprised by what had happened to them (“of all people!”) I hope you’ve been referred to cardiac rehab. If not, insist on a referral from your physician. Best of luck to you…
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Thank you so much for your response. I have not been referred to cardiac rehab, but will follow up on that. Thank you also for the encouragement. The not knowing why is annoying. I will continue to read, enjoy, and learn from your blog.
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Great! Hope you can get yourself registered for a cardiac rehab program. Your only job now is to be come the world expert on your particular cardiac event. Knowledge is power. You are in very early days yet, so be kind to yourself as you go…
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Hello Bea……our 49 year old daughter went into the hospital last April with what is often misdiagnosed…SCAD…spontaneous coronary artery dissection. It mainly affects women.
She is thin, no plaque…..yet she had a bona fide heart attack.. It is caused by tears (small rips) that occur on various arteries…she had two tears which happened two separate days before the heart attack.
Hospital care: use of blood thinning meds to reduce a chance of
blood clots; and blood pressure meds to lower the heart’s demand for blood (reduces pressure in a damaged artery).
The tears were healed…one 80%, the other 100%. I don’t know if this is the case with you, Bea… but there is a blog for women who have SCAD but aren’t getting enough information. They have enlisted the help of a Mayo Clinic physician who is knowledgeable…Dr. Sharonne Hayes.
The primary danger to the heart when the rips happen is that the blood then gathers behind one of the 3 layers of the artery affected and causes clotting.
Psychologically, this has affected our daughter very much because she doesn’t know why these tears happen or what she actually can do about it??
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Hello Anne, I’m guessing the website you mentioned is SCAD Alliance, so I included a link to it in your comment. You’re right, it’s a terrific resource for those diagnosed with a heart attack caused by SCAD. One of the observations published there is this:
“Differentiating SCAD from atherosclerosis is difficult on a standard angiogram — particularly if the cardiologist does not suspect SCAD as a possible cause.”
It’s entirely possible that in Bea’s case, her cardiologist did miss a dissected artery. Or not. We just don’t know. It does certainly happen. SCAD typically affects younger patients (30s and 40s); Bea is 59. We used to think SCAD was rare, but now, as Dr. Hayes says, it’s not rare – it’s just rarely appropriately diagnosed. If your daughter hasn’t already, she should check out the WomenHeart online support group for SCAD patients. I hope she continues to improve.
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Thanks for posting the very interesting video with Dr. Kaski. It was nice to see CAS recognized. All of my six heart attacks have been due to Coronary Artery Spasm, which involved spontaneous intense angina, ST-Elevation on ECGs, and some MIs which were caught naturally on angiograms.
I never had to have coronary reactivity testing – it was a very obvious diagnosis. I have been told by two cardiologists that I may also have MVD. One time an interventionist tried to stent an LAD spasm, it spasmed even worse, and they could not get their equipment/guidewire back out of my artery. After an hour battle with about every type of vasolidating drug available administered via IC or IV, it finally released. Quite traumatic to say the least, and was not a “stent and go” procedure but a few days in ICU & down before heading home. Yes, tons more research needed on CAS, MVD, SCAD for sure.
Many thanks to Dr. Kaski and my doctors at Mayo (and Emory, etc.) for their dedicated work and desire to find answers for better patient outcomes.
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Yikes – what a traumatic experience you describe with your spasm. Thanks for reminding all of us that these are patients being treated here, not diagnoses.
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Now that more time has passed for me since the abrupt 2005 onset of these coronary spasms and micro vessel dysfunction, I can say that this is a progressive dysfunction. I have managed my angina well with the best therapies and by using all the ‘tricks’ I can to calm both the physical and emotional triggers that require those micros to open up even more.
I got out of Emory in 2008 by treatment with sustained nitroglycerin patch because other cardiac dilating or heart function medications did not work. The reduction in pain with sustained nitro was enormous and my ability to exert improved, not back to my prior level of activity but certainly better. By 2010, I experienced more frequent episodes of angina which became longer in duration. My first line of treatment was and still remains to ‘stop’ and use supplemental sl nitro. Nitro always works but I felt the nature of the angina to have become more intense and exhausting. I have tried increasing the nitro patch dosing (patch dosing has not changed since 2008) but with little impact even though I continued to see angina relief with an acute attack by using sl nitro or via IV nitro in hospital for more serious angina.
I have decided that nitro can only work on those micros that CAN open. The added higher split (AM & PM)doses of Diltiazem works very well. My angina, even with optimal medical therapy became a constant pain sign regardless of rest or exertions. It was obvious to all that the angina kept me down even more; I had very few hours in the day that I was not negatively affected by pain. Angina causes pain causes angina….a vicious circle.
It was suggested to me by a cardiac anesthesiologist, for my quality of life, that I seek out a physician who specializes in the evaluation and management of pain. I was his first cardiac patient. It took time for all my doctors to get aboard with the idea of masking some of my angina that naturally requires intervention. But a brilliant idea! This careful approach with daily pain medication, like the sustained nitro therapy for pain, has changed my life for the better. The angina pain has been dulled, not totally gone but my gosh….I feel so much better!
I think it is time that physicians begin a more open dialogue to consider that when angina has reached the optimum relief level provided by other therapies, to incorporate Pain Management. Believe that some degrees of CMVD for some patients causes ongoing pain. Pain Management doesn’t mean just pharmaceutical intervention alone.
Living with daily pain does nothing for a patient already in a daily management health process with few answers or hope. At least think about helping the angina patient be a little more in control of this daily pain; give the patient an opportunity to decide if this is a good approach to the entire medical management of CMVD and a better quality of life.
I still love my nitro, but life is better with this additional help. I remain grateful for my heart care here at home and at Emory. Otherwise, I remain in good health.
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Thanks for your update, Joan. You are so right – pain management does NOT mean pharmaceutical intervention alone. My own cardiologist referred me to our Regional Pain Clinic almost immediately after my own CMVD diagnosis was confirmed when it became clear to both of us that no matter how many drug prescriptions he wrote, my quality of life was declining because of debilitating pain episodes. At the clinic, my pain specialist happened to have completed a 2-year fellowship in Sweden on Inoperable Coronary Microvascular Disease – how lucky was that for me?!
Impressed by my own promising results, I asked him how many other heart patients he sees at his clinic. Very few, he said, although he had been invited to do a presentation to a cardiologists’ meeting to help educate them. Most cardiologists are not pain specialists. At our Pain Clinic, very specific options for angina relief are offered in addition to drug management – non-invasive ones like Health Recovery Yoga, Meditation, Tai Chi, support groups, TENS therapy, etc. as well as meds/surgical remedies like spinal cord stimulator implants or stellate ganglion block. It’s a comprehensive and holistic approach by experts in the field of pain management.
Let’s refer those patients living with refractory angina to those who are trained to help them.
Best of luck to you, Joan!
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One more clarification, Carolyn ~ My comments (BELOW) about the insula are related to MVD dysfunction or symptoms vs standard cardiac patients. There is NO information I have that indicates MVD originates in the brain. I am making the point that it is possible that along with direct cardiac risk factors, there is a brain interplay component that demonstrates symptoms that seem to not make sense, given the “gold standard” angiography model giving us the “you’re fine, it must be in your head” result.
On the lipid front, I have been diagnosed with LP(a), as has Joan Jahnke. This is a genetic predisposition of lipid and atherosclerotic accumulation and MI/Stroke risk. Even though she and I both have clear coronaries as seen in a cath, we both have demonstrated abnormal endothelial function with the (special) provocative portion of the cath.
I have had no children, so pre-eclampsia didn’t “cause” my MVD nor reveal it. My father did have CHF and type II diabetes, so there is a CAD family history. I suspect the LP(a) came from my mother’s side.
As we all have wondered about, there is no full universal terminology for this dysfunction or syndrome. It can be titled endothelial dysfunction (which pops up as terminology in a variety of disease processes), it can be microvascular dysfunction, microvascular disease, ischemic heart disease, microvascular ischemia or microvascular ischemic disease, small vessel disease, or the old standby, Syndrome X, ad infinitum.
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Carolyn, Thank you for writing on this topic!
I would like to suggest that you revise this posting in the main body, to include the video made by Dr. Habib Samady at Emory along with patient, Joan Jahnke. It supplies even more validation. In the description as “treatable”, there is debate on how the outcome is depending on the “stage” of the disease.
According to my own cardiologist, some women experience improvement with exercise, but as you know, some women (even former, young, athletic individuals who were in their prime when the symptoms arose, find that exercise worsens their function. (Sort of like cancer treatment…you’ll be just fine – if the treatment doesn’t kill you first!). MVD has a higher rate of MI and sudden cardiac death (SCD). The reason I presume is oxygen starvation to the heart. Nitro and Xanax are my trustiest tools. The vessels can become “irritable” and till they are settled down with adequate medication, they keep sending symptoms of shortness of breath, chest pain and others.
As a first hand patient with experience, I can say that with exercise, I can spend my energy that way (with meds) or I can spend it living life. Hard to have energy for both in my experience. Even with exercise, I find that emotions (happy AND sad AND angry AND stressed) can lay me out flat … E.R.-style flat. That doesn’t make me “crazy” though, the “anxiety” presumption.
A recent article on meditation demonstrates (in my own opinion) why it helps cardiac patients and MVD patients:
Note the focus on the insula. The insula is the “traffic cop” of the autonomic, physiological and emotional systems in the brain. It touches the amygdala – the seat of emotions. Per WISE researcher Dr. Richard Cannon in 2004, differences were noted in the insula response of MVD patients vs standard cardiac patients; however the research was not followed up. It was as if the insula (and I can’t remember if it was the left or right (I think right), showed that it wasn’t properly responding as compared to “normals”. Dr. Cannon postulated that this might have to do with abnormal pain “perception”.
Amateur that I am, further reading that I did of a textbook chapter on the insula, written by Dr. Bud Craig – Barrow Neurological Institute, convinced me that this is the primary source of where our body symptoms and emotions and cardiac symptoms is “off”. How that comes about and why is still an open question. Is it heart or it is brain? As the famous old commercial goes: It’s two, two, two mints in one! It’s both. If you have an hour, watch Dr. Craig’s presentation to Swedish neurological doctoral fellows – about a one hour lecture. It ties together after about 30 minutes.
Last night, I fell asleep with my hot water bottle on my lap. I awoke with pain on my lap, shortness of breath and chest pain. That was not “emotional”. It was an abnormal cardiac and vascular response to my pain. My brain sent the brain alarm of the burning hot water bottle, but signals also went to my vessels and heart, as it tried to cope with this unexpected demand. Normals would just feel the burning of the hot water bottle and throw it off, right? This was not “emotional”, because I was asleep!
Understanding this helps you understand WHY the meditation can help – it strengthens the insula! Ditto for EMWave training. You can help to compensate behaviorally and not just with medications. But you do need the medications in hand. It can be too life threatening to ignore those.
As the last piece of my commentary, let me direct people to EMDR and Francine Shapiro. For those with a baseline of all emotionally provocative history in your lives – perhaps abuse, or stress, or foreclosure, a traumatic E.R. or hospital experience (or many of them) that have left you feeling that you were alone and dying, or any other emotionally demanding experiences, EMDR can neutralize and vaporize those, so they no longer “consume” emotional space in your head – and the function of the insula. That can be a good thing when you are “compensating” for your MVD or cardiac dysfunction.
Read this New York Times column, written by Dr. Shapiro:
It is an ongoing column and there are several other columns. In my own experience, EMDR helped rid me off the baggage of this, to free up my cardiac “space”. This can also help with “little t” trauma – nothing earthshaking, (maybe being teased in school) or whatever stick in your craw. It can be miraculous and freeing. LIfe changing. Find a therapist who is certified here.
Thank you, Carolyn, for the opportunity to share my own thinking on this subject.
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Thanks Mary – you are a true student of this mysterious diagnosis. Not surprising for those of who live with these symptoms day in and day out. I admire your scholarly zeal.
The Emory/Jahnke video, by the way, was already included in the recommended links list at the bottom of my post.
Speaking of which, thanks for the links here, including the meditation study (albeit small – just 23 meditators studied, average history of meditating = 20 years! – which means that if I start meditating today, I might start seeing some good insula folding numbers by the time I’m 80!) and the info on EMDR (Eye Movement Desensitization and Reprocessing), a therapy that’s been successfully used in patients with Post Traumatic Stress Disorder.
And as we MVD patients know, anything that’s shown to be helpful might just be very good.
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Well, time to get cracking, then
!
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I can’t hear you . . . I’m meditating . . . .
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Carolyn,
Any discussion on how they differentiate patients with MVD who likely have plaque build up on those small vessels and someone like myself and others we know who have 0 risk factors meaning no high blood pressure, very good cholesterol numbers, exemplary healthy life styles etc. In essence have no disease, but rather a condition that to me seems more akin to an auto immune disorder.
Other than the patient with MV disease possibly being able to improve their condition with better life style choices our treatment plans would be the same I guess, so maybe that is why no “splitting hairs”? I should be content that there seems to be a greater awareness of MVD in general, right?!
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Hi Lauren – by now, my personal (and very unscientific!) observation is that there is simply no such thing as somebody with “zero risk of heart disease”. It seems every week, we’re learning of yet another culprit identified by scientists that can be added to the growing list of suspected cardiovascular risk factors (consider pregnancy complications like pre-eclampsia, for example, which we’re now being told is linked with a 2-3 fold increased risk of subsequent heart disease, usually years and even decades down the road). Last week, sugary soft drinks were implicated, too. Next week, it will be something else.
If you watch the Emory/Joan Jahnke video, you can appreciate the causal mystery of the origins of MVD: is it viral insult? Toxins? Hormones?
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