This image shows symptoms of Mast Cell Activation Syndrome, from this article. I can personally attest to abdominal pain, cramping, bloating, nausea, vomiting, difficulty digesting certain foods, muscle and bone pain, muscle weakness, nerve pain, headache, neuropathy, difficulty concentrating, reduced attention span, brain fog, itching, rashes, hives, inflammation, swelling, flushing, inflammation of the eye or conjunctivitis, trouble focusing eyes, itchy and watery eyes, a burning sensation, ulcers on the tongue or in the mouth, coughing, wheezing, difficulty breathing, runny or stuffy nose, sneezing, sinus pain or pressure, enlarged spleen, elevated liver enzymes, high cholesterol, rapid heart rate, abnormal blood pressures (either too high or too low), fainting, anaphylaxis, chemical and environmental sensitivities (and more).
mast cell activation disease
Before doctors figured out that I have a rare blood disease called Mast Cell Activation Syndrome (MCAS), I went unconscious seven times, typically vomiting while I was unconscious.
Right before the first event I was stumbling around my apartment like I had been poisoned, splashing cold water on my face, and generally just trying not to die. Despite my efforts, I went unconscious.
Right before the second event I thought, “If I live through this one, I need to update my will.”
Right before the third event I thought, “Apparently I’m going to die soon. I just want other people to be happy, and if I live, I want to help them however I can.”
After that, for events #4 through #7, along with three subsequent cases of allergic angina — what I call “fake heart attacks” — I had no significant thoughts in my mind, just peace.
These days when something bad happens I recall those 7-10 events, and know that I could have died during any of them. When I think that way, all of today’s little problems seem insignificant.
This slide on “Mast cell-associated disease-specific pain syndromes” comes from doctors Tania Dempsey and Lawrence Afrin. I don’t remember exactly where I saw it, but it was probably on The Mastocytosis Society Facebook page.
At some point somebody was like, “Let’s get a mast cell — a type of white blood cell — from a bone marrow biopsy, magnify it 1,000 times, piss it off, and see what happens.”
The result? Ka-boom! It looks like a little firework went off when it released its histamine, tryptase, serotonin, superoxide, heparin, thromboxane, PGD2, PAF, and other granules.
That’s pretty much what it feels like, lol. I used to tell doctors that it felt like I had been drugged, and indeed, I was.
“Mast cell disorders are neoplastic disorders, which means the mast cells multiply continuously over the patient’s lifetime. As with cancer cells, mast cells do not die, disappear, or cease to function, on their own.”
A few notes from the article I linked to:
This post discusses medications used to treat MCAS. Doses listed are taken directly from “Presentation, diagnosis and management of mast cell activation syndrome” by Lawrence B. Afrin. These doses are general recommendations. Medication should always be taken under the direction of a provider who knows you and your case personally.
I woke up Thursday morning at 2:15 am and quickly knew something was wrong; if I didn’t act fast I was going to go unconscious for the eighth time. I threw down some Zyrtec and Benadryl, put some ice in a towel, went outside, and sat down with my head between my knees. (When I get close to passing out I feel extremely warm, like some form of hyperthermia, so I try to cool down as fast as possible.) I don’t even know what I did wrong this time, but that’s how life with MCAS rolls.
This image shows the symptoms of mast cell disease. I’ve had every one of those (except for that gynecological one). The image comes from The Mastocytosis Society website.
Update: I noticed that they missed a few things, including unusual/allergic reactions to medications and insect bites.
If you have Mast Cell Activation Disease (MCAD, also known as Mast Cell Activation Syndrome, MCAS) and need to have a surgery, here is the advice I received from the doctor/specialist who is treating me for MCAD/MCAS: “For patients such as yourself, I suggest continuing on antihistamines and taking prednisone (40 mg) the day before, the morning of, and soon after a procedure. Generally, the anesthesiologists and surgeons are fine with this.”
August 31st is a new anniversary for me: One year ago today I hit rock-bottom health-wise. On that day, despite feeling very sick, I needed groceries and went to the store. By the time I got to the milk section I was shaking quite a bit, and when I tried to pick up a half-gallon of milk, I didn’t have the hand strength to hold onto it, and it fell to the floor. It exploded open and soaked my lower legs and feet.
After a few moments of humiliation, I thought I better find a store employee so they could clean it up. As I walked around trying to find someone, tears were welling up in my eyes because I was so upset about my health; I couldn’t even grip a half-gallon of milk. I finally found someone, a young, healthy man — healthy, like I used to be — and when we got back to the milk section he nicely said, “No worries, don’t cry over spilled milk.” That made me want to cry even more.
When I was laying in bed later that afternoon (because that was all I could do by that time), I started doing research on my phone, and made a decision to stop taking a medication a kidney specialist started me on in February. Stopping that medicine made me even sicker in some ways, but that turned out to be a good thing: It became the final clue that I have Mast Cell Activation Syndrome. These days, other than significant dietary restrictions, I live a relatively normal life.