Never Bet Against Occam: The MCAS “Bible” In Review (Part Eleven)

Welcome back to my in-depth review of Dr. Afrin’s book, Never Bet Against Occam. If you haven’t gotten your copy yet make sure to order one right away! I am not exaggerating when I say that it is the MCAD “bible”. It’s just packed full of useful information for both patients and carers and is a must have for anyone with mast cell activation disease.

Note: I am not affiliated with Dr. Afrin in any way, I am just a happy patient (not his) who fully endorses his work. Also, this is not medical advice. If you believe you have mast cell or any disease please see a doctor. These are just my own experiences with this disease.

In chapter 14 Dr. Afrin tells us how mast cell dysfunction can cause both “fake out” heart problems and very real ones, too. For the “fake out” example, he uses a patient named Gladys to illustrate the issue:

Gladys is typical of MCAS patients who have chest pains that (appropriately) worries the physicians about the possibility of angina or an actual heart attack (or, as it’s medically called, a myocardial infarction or MI, resulting from obstruction of blood flow through the coronary arteries to the heart muscle) and yet has no obstructions in her coronary arteries.

I’ve personally felt like I had heart disease since my early twenties so this was very interesting to read, not to mention mine and Gladys’ childhoods sounded very similar. I was the “sickly” kid and so was my brother, who is also extremely ill right now.

Part of the reason for believing I had heart disease so young was because I was having very real symptoms and also because of my extensive family history of heart disease and strokes. My aunts, uncles and mom all had either died from or were battling heart disease my entire life so I grew up hearing stories and seeing the scars and watching them pop nitro pills and it scared me.

A lot.

I even wore a heart monitor trying to catch mine, I was SO sure I was dying at times. My symptoms were mostly dizziness, chest pain and weakness. Occasionally both of my hands would go numb (they still do). I also would get skipping heart beats and a racing pulse for no reason, along with feeling like I wanted to faint if I stood up too fast.

I always thought the fainting, or wanting to faint, and vertigo was either my blood sugar or dehydration or anemia or concussion syndrome or heart disease. I was leaning toward the last two. I’d complained to doctors about this symptom numerous times, and they listened and seemed to care, but nothing ever showed up on tests, so I gave up complaining after awhile when I kept getting the same reaction from the doctors.

I felt like a hypochondriac, to be honest and if they thought I was one, too, I wouldn’t blame them one bit.

Now I know I’m not imagining things and I’m not crazy(haha well..) or a hypochondriac! I also understand better why this is happening to me, even if they aren’t exactly sure how our mast cells are causing these heart-related issues.

The fact is, they are contributing to heart problems. Dr. Afrin explains:

It is not known yet whether the chest discomforts in these sorts of situations is a result of a flare of inflammation or spasm of the chest wall or esophagus or lung or some other thoracic structure, but it’s not likely being caused by damage to muscle (chest, heart, or esophageal) since our blood testing has gotten pretty good for detecting muscle damage, and yet such patients usually don’t show any signs of muscle damage.

He also mentions that the most common heart related issues he sees in MCAS patients is presyncope, or feeling like you are going to faint, like I have. He says his patients describe it as “dizzy” or “vertigo” or “lightheaded” and I definitely relate to all of these because these are the descriptions I used with my doctors.

I also faint fully and I also have seizures when I do, so it’s very scary. These symptoms may be caused by POTS, a form of dysautonomia, but I haven’t had a tilt table test to confirm it. I do fit the profile and POTS is a common coexisting condition with MCAD.

Before my diagnosis and being put onto the right medicines I used to get a lot of chest pain, too, and Dr. Afrin says he sees this a lot. He says it’s not in the typical pattern seen with anginal chest pain from coronary arterial obstruction but MCAS can cause chest pain and it can also drive the development of abnormalities both arterial and venous. Sometimes fatal abnormalities.

Yikes!

Idiopathic congestive heart failure, Kounis syndrome and Tkotsubo syndrome may all be connected to MCAS so we as patients need to be made aware of these risks, and our doctors need to be aware of them, too. Especially our cardiologists.

In case you’re wondering, like I was, here’s a definition of the last two of these disorders I just mentioned:

Kounis syndrome (from Wikipedia):

Kounis syndrome is defined as “the concurrence of acute coronary syndromes with conditions associated with mast cell activation, involving interrelated and interacting inflammatory cells, and including allergic or hypersensitivity and anaphylactic or anaphylactoid insults.” “It is caused by inflammatory mediators such as histamine, neutral proteases, arachidonic acid products, platelet activating factor and a variety of cytokines and chemokines released during the activation process. Inflammatory mediators including histamine, neutral proteases, arachidonic acid products, platelet activating factor and a variety of cytokines and chemokines are increased in blood or urine in both allergic episodes and acute coronary syndromes. The release of mediators during allergic insults has been incriminated as a cause of coronary artery spasm and/or atheromatous plaque erosion or rupture. A common pathway between allergic and non-allergic coronary syndromes seems to exist. Today, there is evidence that mast cells not only enter the culprit region before plaque erosion or rupture but they release their contents before an actual coronary episode. Kounis syndrome, as consequence, of the above pathophysiologic association is regarded as nature’s own experiment and magnificent natural paradigm showing novel way in an effort to prevent acute coronary syndromes.

Takotsubo syndrome (from Wikipedia):

Takotsubo cardiomyopathy, also known as stress cardiomyopathy, is a type of non-ischemic cardiomyopathy in which there is a sudden temporary weakening of the muscular portion of the heart. This weakening may be triggered by emotional stress, such as the death of a loved one, a break-up, or constant anxiety. This leads to one of the common names, Broken Heart Syndrome. Stress cardiomyopathy is now a well-recognized cause of acute heart failure, lethal ventricular arrhythmias, and ventricular rupture. The name “Takotsubo syndrome” comes from the Japanese word for a kind of octopus trap (ja), because the left ventricle takes on a shape resembling a fishing pot.

There is a lot more in chapter 14 and I don’t want to give it all away, so remember to get your copy and read it for yourself. It’s a very informative and easy to read book!

Join me next time for chapter 15 where he tells us all about  my favorite topic and one we can all probably relate to (unfortunately), which he aptly names, “Well, We’re In a World of S**t Now: Gastrointestinal Findings in MCAS”.

Until then, won’t you please share this post on social media to help spread #mastcelldiseaseawareness with me? I can’t do it alone but together we can (hopefully) make a difference!

 

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