What does mast cell degranulation feel like?
Regardless of how I am triggered (food, medicine, fumes, stress, etc) the symptoms are just about the same, to varying degrees. Sometimes I get a few and sometimes I get them all. This is a description of a “full blown” degranulation event (for me).
The first thing I notice is I will get ‘sniffly’ and start sneezing over and over. Then as this is happening, my voice begins to change. I get incredibly hoarse. I can’t quite tell if it’s my throat closing off from swelling or just mucous. Mucous from hell comes from seemingly nowhere and starts to accumulate in my nose and throat and I just can’t get rid of it. I drown in mucous.
My eyes water and my breathing often gets wheezy. It feels like I can’t take in a full breath. My lungs get inflamed and coated in mucous, too, and I feel it reduce my lung function pretty drastically. I can spend a good 20 minutes coughing up mucous (which makes me nauseous). I have thrown up from the mucus onslaught, but not often.
At some point during all this my ears get “gummy” and crackly (again from inflammation) and often I feel the swelling begin. My lips swell and tingle and I want to chew on them for some reason. It releases some of the pressure, I suppose.
The swelling doesn’t stop there, I will gain upwards of ten pounds within a very short time. I feel the pressure of the fluid build up pulsating in my body. I can hear my heart beat loudly in my ears as I feel the tachycardia fully set in. I get dizzy and lightheaded. Sometimes I get full blown vertigo. If I pay close attention, my heart skips beats. Sometimes, at this point, I faint. Sometimes I have a seizure when I faint.
I get really tired and my mood drops. Like a rock. I can go from being happy-go-lucky, on top of the world, and on cloud nine all at the same time to feeling clinically depressed within minutes.
Then comes the itching.
I freaking itch from head to toe.
Even my eardrums, eyeballs, and appendix itch, it seems.
Sometimes the itching will be accompanied by patches of hives. Sometimes they come up in big patches on my torso or on the tops of my feet. Sometimes I get a few on my jaw line and neck. A lot of times they come up where I sweat (along my bra line, under my arms, in my groin area). Itching them only makes it worse, so I try my best to refrain. If I do scratch my itchy self, my dermatographia kicks in and leaves big, red welts wherever I touch.
And then they burrrrrnn. I feel like I’m on fire sometimes even when I don’t trigger the dermatographia. My skin just feels hot by itself and I can see what looks like sunburn form under the surface. If it works its way to the top, I get flushing. Mostly on my arms, chest and neck but sometimes on my face, too.
My skin feels hot but my hands and feet get ice cold. I can’t get them warm no matter what I do and it drives me nuts (and the hubby since I put the cold things on him in my futile attempt to warm up)! It feels as if I can’t regulate my body temperature, which fluctuates between 96 and 100 degrees on the thermometer. It changes so rapidly it’s mind boggling.
Sometimes my eyes dilate and I look possessed. I get big, black circles underneath them and sometimes my lids swell, too. By now I have a dull headache. My neck and shoulders get stiff and I get tingling or electrical sensations running along my scalp and down my spine.
Then the brain fog and extreme sleepiness begins to set in, especially with food. I go into a ‘food coma’ easily and I want to sleep for hours. Sometimes I have nausea but I always, always have massive anxiety and, if it’s bad, and I am really super flared up, then dark (dare I say paranoid and delusional?) thoughts start to creep in. I have to remind myself it’s just a “spell” and it calms down. I can’t give into the paranoia or I end up completely consumed, convinced something bad will happen.
It is an understatement to say that at some point during my flare I become extremely irrational and scattered in my thinking. I will begin to have racing thoughts that run on a loop, and I find myself repeating the same things when I talk. I can’t finish my sentences and I get lost mid sentence.
To an outsider, I can sometimes appear manic. I get laughing or crying spells (gelastic seizures?). A psychiatrist would easily say I was bipolar during a flare as well as schizoid, depending on the severity, because I hear phantom sounds, smell phantom smells and see things in my peripheral vision that aren’t there.
My muscles feel like jelly by now and I get super shaky. I struggle to lift something as light as a gallon of milk. I get pins and needles in my hands and feet. Sometimes it goes almost up to my knees and elbows and feels like when your limb is (normally) just falling asleep.
I have the urgent need to go to the toilet and it’s usually liquefied when I do. After that I will get constipation that lasts for days (and days).
Somewhere during this process my hip starts to hurt and radiates pain up into my ribs and down to my knee. And if my trigger is something I ate I get stabbing abdominal pain in my lower left side, as well. That’s a guarantee. It’s so predictable I dread it. I call it the “invisible icepick man” stabbing me, it hurts so bad.
I almost always get the hiccups and under my right eye twitches, or, if it’s bad, all of my eyelids will twitch, which is WEIRD and extremely annoying. Nerves begin firing off everywhere and my muscles begin to twitch and ache. The ache goes all the way to my bones sometimes.
My gums get sooo inflamed and will bleed if I touch them. My teeth feel loose (?) and I have an area on my upper left side that swells and forms a blood blister type thing and it is a definite sign of degranulation. I made the mistake of going to the dentist during one of these flares and he was sure I had infection and needed at least a root canal but I assured him that it had always been with me and it came and went and wasn’t a pocket of infection. It’s just a really good indicator for me that I’m really, really inflamed.
The amount of time it takes from exposure to flaring depends on the source. Foods take a lot longer, sometimes hours or even the next day. Once it starts it can last anywhere from a few minutes to days. Looking back, I can see that I have degranulated for weeks on end before (!).
When I finally come down from a flare it always ends with what I call a ‘toxic sweat’. It feels as though I’ve been poisoned, which I have been, really, because of how mast cell degranulation works, and it seems like the sweat is the final purge. It reeks and it’s sticky and gross and makes me feel an urgent need to take a hot shower.
Of course hot showers trigger me so…