I remember back when I first learned I have mast cell disease, finding it funny the way Lisa over at MastAttack.org conveyed what it’s like for her living with mastocytosis.
She coined the term ‘degranulation station’ (at least I think she did) and she is the one who inspired me to start blogging about living with mast cell activation disease myself.
One of my first posts about MCAD way back then when I still wrote about it on my housewife blog was all about what mast cell degranulation feels like (for me). Here’s how I described it:
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.
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, too. It feels like I can’t take in a full breath. My lungs get coated in mucous, obviously, and I feel it reduce my lung function pretty drastically.
At some point during all this my ears get “gummy” and crackly 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 six 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.
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, usually in the places I sweat. So I will get hives that form along my bra line, under my arms and in my groin area. Itching them only makes it worse, so I refrain. If I do scratch my itchy self, my dermatographia 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.
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 laying awake all night, worried 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 even. It’s not dangerous, just annoying. I can’t finish my sentences and I get lost mid sentence.
To an outsider, I can sometimes appear manic. 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. Again, I’m not dangerous, just… mixed up?
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 have the urgent need to go to the toilet and it’s usually liquefied when I do.
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 ingested 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 get the hiccups and under my right eye twitches, which is WEIRD, but true.
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 inflamed.
Sometimes, I faint from the hypotension.
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 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…
That pretty much sums it up.
Now that I know what’s wrong with me I try to keep a positive attitude and what little is left of my dignity while living with mast cell activation disease, but it’s not easy when you find yourself in the throes of degranulation again and again.
Sometimes you can see the train coming and other times you’re already under it before you know it’s there!
That’s what happened to me again yesterday afternoon. Out of nowhere, a sudden flood of mucus came at me like a tsunami again. It poured, literally, from everywhere all at once and worse, my sinuses and throat closed shut from swelling so I couldn’t f***ing breathe!!
It was awful.
It’s not the first time it’s happened, but when my throat closed off completely it scared me so I panicked, which escalated things even further. Then I quickly remembered I love my life and my family and my pups and I’m not quite ready to find out what lies in the great beyond (or doesn’t?!). So I forced myself to calm down, got to my meds and by using enough Nasalcrom and hitting my inhaler when I could finally get a small gulp of air in after expelling gallons of clear, thick, sticky mucus out of my lungs and throat and nose, I survived it (yet again).
Again, it seems like that Nasalcrom is the magic bullet because it works quickly and it really calms everything it touches right down. I squirt enough in each side until I feel it open up my nasal passages and then run down the back of my throat really good. I want it to get down there because of the swelling and mucus that closes my throat off completely.
It’s such a lifesaver, I think I’ll order a case of it next time…