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.
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.