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

Hello and welcome back! In case you’ve missed it, I’ve been writing posts as I go chapter by chapter through Dr. Afrin’s awesome book, Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.

I love, Love, LOVE this book and I love Dr. Afrin for putting all this information out there for us.

He really “gets it”!!

I’m on chapter 8 now, which is just a one-and-a-half-pager that is entitled “A Sight For Sore Eyes: Ocular/Opthamalogical Findings in MCAS”. It answers a lot of questions about my own eye problems I’ve been having my whole life and I learned something I didn’t know right in the first couple of sentences:

…back in the 1970’s it was determined that there are about 5,000 mast cells per cubic millimeter of conjunctival tissue (i.e. the insides of the eyelids)

Whoa. That’s a lot of mast cells! No wonder we have so many eye complaints.

He goes on to explain that, in his experience at least, no one with MCAS has a life-threatening eye condition, which is good news. Instead, we just have a lot of really annoying things going on with our eyeballs and eyelids.

As a kid I had sties and conjunctivitis a lot but as an adult I mainly have problems with either really weepy/teary eyes or dry/gritty sandpaper-feeling eyes. He says that the most common complaint he gets from his MCAS patients is “irritated eyes” so that covers it for me, really.

He also says that we tend to have varying degrees of success with mast cell targeting medicated eyedrops, like olopatadine, cromolyn or ketotifen:

Relief from these and other medicated eye drops is quite variable from one patient to the next. Thus, it’s not at all clear whether it is histamine or some other mediator(s) being released from ocular (or other) mast cells that are causing this irritation in any given patient, and it might well be different mediators causing the same or similar symptoms in different patients.

That last part is something I am just beginning to understand. There are so many chemical mediators being dumped by our mast cells that it’s not fair to try to pin it all on histamine alone. It may be one or many combined chemicals causing problems and each of us are so very different it’s almost impossible to know which one it is.

He continues:

The second most common eye-related complaint I’ve encountered is brief, unprovoked episodes (typically a minute or two, sometimes shorter, sometimes longer) of loss of visual focus. This virtually always affects both eyes at the same time.

This has been driving me mad forever!! My vision will get so blurry, to the point that I have to give up looking at anything too closely, like the tv screen or a page in a book, until it passes. Reading glasses don’t help, either. My eye doctors always tell me it’s probably from overstraining my eyes, but that isn’t the case with me. I can wake up with this and have it come and go off and on all day.

He covers yet another eye problem I’ve had for as long as I can remember and am struggling with even as I type this (grrrrr!!):

The third most common eye-related complaint I’ve encountered in my MCAS patients is blepharospasm, a trembling of the upper or lower eyelid.

I typically get a twitch below my right eye (between my bottom lid and my cheek) but this is different than that. My eyelids are twitching away crazily on both eyes, both upper and lower lids are doing it, and it’s been going on for three days now, along with the other degranulation symptoms I’m having. So it’s definitely the MCAS causing it for me and there’s really not much I can do about it but wait for my mast cells to calm down.

Dr. Afrin addresses this frustration:

It bothers some patients to the point of asking their ophthalmologist to inject the affected area with the pharmaceutical form of the paralytic botulinum toxin, but this treatment sometimes causes temporary or permanent paralysis of the other facial muscles resulting in cosmetic issues worse than the original problem, and in my experience, even if the blepharospasm is improved, it relapses within weeks to a few months.

I have actually tried Botox for vanity purposes around my eyes (I hated it) and, to be honest, I don’t recall if it alleviated the eye twitches because that was before my dx and learning what to look for when I degranulate. Even if it worked, as Dr. Afrin pointed out, it’s short lasting, really.

It is expensive, too, and makes me feel (and look!) extremely taut and I am just uncomfortable until it wears off, so I don’t like it anyway. As a former esthetician, I’m really curious though if things like Botox and dermal fillers have mast cell triggering things in them, but that’s not what this post is about so I will tackle that topic another day. 🙂

I definitely believe my own eye twitches are MCAS related and so does Dr. Afrin. He has this to say about it:

One hint that blepharospasms, at least in some patients, is due to aberrant mast cell reactivity is that some patients (in my experience) note substantial or even complete improvement in this irritating symptom upon relocating to a new area or residence.

Since moving houses isn’t an option for me, I’ll just have to live with this annoyance until my mast cells settle down. And they will. Until they get stirred up again.

He finishes this chapter by talking about seeing unprovoked small eye bleeds called hyphemas in the sclerae which make him wonder whether there has been a release of heparin by ocular mast cells.

He also has this to say, in closing, about mast cells and eye inflammation:

Although I see no reason why inflammation in other eye structures (for example the iris, the uvea, the retina) couldn’t also occur as a consequence of MCAS, I haven’t yet seen such cases, again likely because they’d go to the ophthalmologist, not me.

My eyesight is still really good, even in my forties, so I don’t bother to see an eye doctor regularly but these mast cell disease related eye problems are really bothersome and I could never figure out why my eyes were always so “buggy”. Now I know why!

Something else that I definitely get when I’m really degranulating, and may be related to the possible inflammation he talked about, is what I can only describe as a “shifting” going on with my eyeballs themselves. It feels like the whole eyeball is spasming. I also get these strange patterns of light behind my eyes when they’re closed when it’s happening. They usually start on my peripherals and come together quickly to form a ball of light that shoots off into the distance, over and over. Or, often I will see what appears to be a tunnel with shadowy people moving forward in it when my eyes are closed (yes, I know it sounds weird because it is).

Before I had my metal fillings replaced a few years ago I also experienced a lot of movement in my peripheral fields which would trigger my anxiety because it seemed like there were silhouettes of people moving around there, too, except my eyes were open. I also had a lot of “seeing stars” and shooting lights going off, like fireworks almost. I can’t tell if that’s an eye issue or a visual cortex one, but it’s probably inflammation caused by MCAS which was exacerbated by my metal fillings (one of which was cracked for years because I hate the dentist!!) which were leeching toxic mercury into my bloodstream, undoubtedly.

Once I had all my old, nasty, metal fillings replaced a lot of things calmed down and I honestly thought I’d had mercury poisoning for awhile, before I knew about MCAD. I didn’t know mercury exposure could trigger my mast cells, either.

Now I DO know, and I want to know more!! This book has a lot more, so make sure to tune in next time when I move on into chapter 9. It’s all about how mast cell activation affects our poor EARS. He calls it, “Do You Hear What I Hear?”. I am sure I can definitely relate to a lot of that chapter, too.

So until next time, stay safe and try not to degranulate!! 🙂

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 activation disease and I can’t do it alone. I rely on dear readers like you to help spread the word. Thank you so much for taking the time to read and learn with me. Remember, we’re in this together!!

 

xo Michelle Dellene

 

 

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