MCAS & COVID: My Experience

When COVID hit, my husband lost his job and at the same time I lost my old website, MastCellDisease dot com because without his income I couldn’t continue to pay the cost of upkeeping servers as well as paying for the security that website needed since it had been hacked multiple times. Popular websites are always targeted and mine was no different.

It was just before the lockdowns, when I was still active on Twitter and before the pandemic really took hold when the hubs got sick first. He usually recovers quickly from things but this time he was really, really sick. It was at the end of January 2020 and I remember we were concerned he’d need to go to the hospital because his lungs were so, so bad. So we figure he had COVID then looking back now.

I also started to come down with whatever he had before his got bad and even tweeted about it (which is probably still there if I log into my old account to look). I mentioned it was unusual because since my MCAS has gotten worse, I don’t get sick. I’m always sick, of course, but I no longer get flus or colds because when they come around, my hyperactive immune system seems to fight them right off.

So I put this tweet out that it was weird I was feeling like my first cold was coming on in years, and actually thought it was maybe a sign I was actually getting better (sounds weird, I know) and had a reply from one of the doctors I used to interact with there who told me to use salt water in my netti pot right away because he found it to be the best remedy to stop a cold in its tracks.

So I took a hefty dose of my regular meds before bed (quercetin, aspirin, h1/h2) and I flushed my sinuses out and woke up completely normal. No hint of a sniffle, except my normal morning pre-med mast cell one.

You can tell the difference between a cold/flu sniffle and a “normal” one for us lol.

While the hubs continued to deteriorate I went on like normal, taking my meds and feeling just fine. Had I known my mast cell stabilizers could have helped him immensely I’d have given them to him but he pulled through eventually and recovered, almost fully.

He still has residual lung problems and you could say he had “long covid” afterwards for several months but overall he’s back to normal. Neither of us have ever had COVID again (if that’s what it was to begin with).

I’ve not had a cold or flu again since then, either, but neither has he so hmmm… 🤔

What Does Mast Cell Degranulation Feel Like?

One of my most popular posts on my old blog described in detail what it feels like to degranulate. I can only speak for myself, but after meeting so many of you with mast cell disease over the years I learned that this is pretty relatable to most of us.

Mast cell degranulation is in many ways a slow-motion anaphylaxis, for those of us who are “leakers” that is. Some patients have full on, sudden anaphylaxis and that’s different. Some of us call them “shockers” (even though many of us both leak and shock). I am mainly a “leaker” which means I don’t get sudden attacks usually but am almost always suffering from at least one or two symptoms of anaphylaxis all day every day.

Anyway, at my worst, degranulation goes something like this:

It usually starts with a sniffle or with my eyes starting to water. Then I’ll begin to sneeze. I will sneeze dozens of times without stopping. Depending on the source of the trigger, my stomach may begin to ache and I get queasy. Then the mucus attack begins. It comes from everywhere mucus is produced, in quantities that defy physics, and it erupts all at once making it hard to breathe, swallow or just, you know, exist.

I can spend twenty minutes blowing my nose and on the toilet expelling the mucus but it just keeps coming until I get mast cell stabilizers in me. The emergency inhaler and my cromolyn nasal spray is my first line of defense. Then I try to drink some gastrocrom to stop the gut thing.

Those don’t always stop it from getting worse, though, although it can because sometimes degranulation is like a cascade effect so stopping it early can prevent it from getting bad but if the trigger is bad enough, then these only stop the mucus onslaught. It takes using extra aspirin, quercetin and Benadryl along with my H1 and H2 blockers. A warm bath followed by a blast of cold helps, too, which I’ll talk about in another post.

At some point the POTS kicks in and I get dizzy and my mood drops like a rock. I can go from happy-go-lucky to clinically depressed in minutes and I just want to lie down in a dark room because suddenly lights, sounds and even the feeling of my clothes on my skin begin to cause pain and distress.

If I get dizzy enough, I’ll pass out and sometimes if I pass out and my head isn’t completely flat, I’ll have a seizure.

And itching. Oh, my god, the itching. Even my eyeballs will itch and I have to be careful not to scratch myself until I bleed. When I do scratch, the dermatographia kicks in and I can do “skin writing” on myself which is fun.

I usually get painful, deep hiccups at some point and the nerve under my eye begins to twitch. My gums will start to swell and bleed and my skin starts to turn bright red, like a sun burn that comes from inside out and starts deep in my bones. Sometimes hives will begin to pop up in huge patches, often in random places.

By now the brain fog is setting in so I forget why I’m suddenly so sick and will even ask outloud, “what’s wrong with me?” usually right before the ice pick man shows up to start randomly stabbing me. That’s probably the worst part of it because the pain is so directed in one spot, just like being stabbed.

My abdomen swells and I can look eight months pregnant in seconds, which is also painful. The swelling doesn’t always happen, usually with a food trigger, but sometimes for other things. Anything I’ve eaten liquifies and it’s excruciatingly painful there and in my bladder, too. It feels like I have a bladder infection but now I know it’s just sterile inflammation.

It also feels like I have an ear infection in one or both ears and they will hurt so bad. Sometimes I get ringing in my ears, but usually one or the other one will “turn off” in the same way my vision in one or both eyes will go wonky. I will see sparks and other weird light effects, my eyelids themselves will twitch nonstop and sometimes my vision will “pop”, meaning it will go out and then slowly come back online. It’s hard to describe but it’s annoying. My son gets orange vision, which seems to happen to some of us, too.

So by now I am an itchy, red, inflamed and allergic mess who can’t remember her name or that I even have mast cell disease or that a few pills, puffs and a douse in some cool water usually brings me right out of it without having to use an epipen. I avoid using those unless it’s dire, and while there were times I probably should have injected myself, I survived and now do what I can to prevent a full blown degranulation episode if at all possible.

Which means living a very strictly controlled life. We grow most of my food, I work from home and I avoid public places as much as possible which is thankfully easy to do living next to Yellowstone.

Like so many of us I am triggered by dozens of things and can’t prevent getting triggered, of course, so at the first hint of signs I will take extra meds or use my nasal spray and inhaler ahead of going into a store with fragrances (which I generally avoid doing). My daily meds do a fair job of keeping everything in check so I don’t use my emergency meds that much anymore but at first I was using them a lot.

Too much.

Hopefully someday none of us will need mast cell stabilizers, but until then, I sure am glad they exist. They’re my life saver.

What is degranulation like for you? Feel free to share in the comments.

Mast Cell Hell & The Holidays

Anyone with mastocytosis or MCAS can attest that the holidays are the worst time of year for some of us. The added stress, change of seasons, a barrage of smells, foods we want to eat but can’t have (but probably sneak some of anyway and then pay for it later)… ugh! It can be a nightmare.

This year I did pretty well mostly because we’re empty nesters now so my holidays are much less busy and my symptoms overall are more controlled than ever. I’ve worked out the right medicines to take (I use mostly OTC in combination with a couple of Rx meds) and recipes I can use that don’t trigger me that also keep everyone else happy because they taste delicious. So no one is made to go without here just because my mast cells want to be assholes. 🙄

It took forever to fine tune my cooking, though, and the fact that my son who also has MCAS has different food triggers than me makes it unbearably difficult at times to make meals we can eat and enjoy together. Finding foods that we can enjoy period has been a huge journey and now that we’re on the other side of it I am happy to share my experiences here just in case it helps one other person out there suffering from this insidious disease.

In case you are one of those people, I hope your holidays were degranulation free, too, and that you’ve managed to find a way to live through this time of year with as little pain and suffering as possible. A few years ago I wasn’t sure I would live to see another holiday, or if I even wanted to given how much pain and suffering I was enduring at the time, so I understand if you’re also struggling. If you are, just hang in there. I’m living proof you can successfully manage mast cell disease but it does take patience, persistence and a whole lot of stubbornness.

It also helps to not go it alone. 💜