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

I hope you’re enjoying this in depth, chapter by chapter review of Dr. Afrin’s exhaustive book on the topic of mast cell activation disease, Never Bet Against Occam. You can read the entire series by clicking here and you can buy the book by clicking here. I can’t recommend this book enough!!

I’m up to chapter 9 now, and it’s all about our ears. Again, I can really relate to so much of this chapter so let’s dive right in!

He starts off by giving two examples of patients (bless their hearts!) who he saw that were both deaf (among other issues) and who ended up responding well (finally!) to mast cell medications.

I have to stop here to say that the patient stories he includes (and there are many) are worth the cost of the book alone. I can’t tell you how helpful it is that he adds detailed accounts of his experiences with these patients and their myriad of confounding symptoms. It shows how passionate about this disease he is and it also shows the compassion Dr. Afrin seems to have for us, which makes me really happy, given that many of us have had less than stellar interactions with various doctors over the years.

Many of us have been outright labeled as hypochondriacs or told we have psychosomatic symptoms (he talks about this, too). Some of us just can’t find a doctor who will listen or take care of us, even after we have been diagnosed. In fact, in one deaf patient’s account in this very chapter he relates that after diagnosing her:

She has not been able to find a primary care physician, noting the local primary care physicians she has approached have refused to accept her because of her MCAS diagnosis. (She’s been repeatedly told “I don’t know anything about that” and “That’s too complicated.”)

Isn’t that incredibly sad? I am so thankful to have my immunologist after reading that! My family doctor is also extremely compassionate and is willing to work and learn with me, thank goodness. I can’t imagine not having my doctors’ support.

He then goes on to state that:

…in general the dominant otological issues in MCAS patients continue the theme of generally non-infectious inflammation. Episodes of otitis externa (“painful” or “itchy” helices and/or canals) are fairly uncommon, while otitis media is more common, especially in children.

Otitis media simply means a middle ear infection. I personally haven’t had any ear infections that I can recall, even as a child, thankfully, but I do get the painful and itchy inner ear thing a lot.

He has this to say about the ear infection issue:

While otitis seems to be the more common childhood otologic issue from MCAS, dysacusis — particularly tinnitius — seems to be the most common otologic issue from MCAS in adulthood.

I definitely get tinnitus (and temporary hearing loss in one or both ears) and I often will feel like I have the beginnings of “swimmer’s ear” where it feels like there is water trapped in my inner ear and it drives me bonkers. They feel wet or gummy and crackly and it’s just obnoxious.

He doesn’t mention stabbing pains, but I get those quite a bit in my ears, too, like someone is sticking an ice pick in my ear drum. Ouch! I hate that “invisible ice-pick guy” the most!!

I also sometimes get a feeling of fullness in one or both ears, which he says is common in MCAS, too:

Often, too, MCAS patients will report an intermittent or chronic waxing/waning sensation of “fullness” in one or both of their ears, perhaps reflecting swelling from inflammation in the inner ear or Eustachian tube.

As far as (permanent?) hearing loss, he says:

Hearing loss presumably is due dominantly to the otosclerosis (of the tympanic membrane and/or the inner ear bones) which has been demonstrated in patients with mast cell disease, though degenerating canal hairs or auditory nerve function theoretically are other routes to hearing loss.

Our ear issues are often a mystery to both us and our doctors, and the cause (mainly sterile inflammation) doesn’t make sense until you understand how MCAS works. It’s not just our ears, either, of course. The next chapter goes into how our faulty mast cells can affect our nose and sinuses, something I think we ALL can relate to.

I know I certainly can!!

So I will pick up there on my next post. I hope you’ll join me! Until then, take good care of yourself and your mast cells. And remember, we’re in this together!!

Won’t you please take a moment to share this post on social media? The purpose of this blog is to bring awareness to mast cell disease and I can’t do it alone. I rely on dear readers like you to help spread the word. Thanks so much!!

 

xo Michelle Dellene

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