#1. Never underestimate your mast cells
Everyone has mast cells. Mast cells are part of our immunes systems; they help keep us alive. For most people, mast cells are occasionally annoying – a runny nose in the spring, a bug bite in the summer, or perhaps eczema in the winter.
However, mast cells can also destroy us, especially in the case of mast cell disease. Basically, overactive mast cells incessantly dump dozens of chemicals into our bodies and we suffer in a million different ways. My mast cells have given me a black eye, temporary deafness, paralysis, and adhesions to name a few uncommon symptoms. Reactions can affect every organ of the body, causing symptoms and complications beyond most doctors’ imaginations. Always consider mast cells as the culprit.
#2. Do not ignore or argue with your mast cells
You will not win. Mast cells have strong opinions and rarely compromise. If you continue to disregard your mast cells, they will probably try to suffocate you. I really regret ignoring my mast cells’ warnings and continuing to expose myself common triggers (e.g. heat, high histamine food, fragrance). As a result, instead of just flushing and nausea, my throat started swelling all the time. After my first ER visit, I vowed to listen to my mast cells, but it was too late. They could not calm down. It took a full year of avoiding triggers to decrease the severity of my reactions. Others are not as lucky.
If a trigger is absolutely unavoidable, consider pre-medicating. If you’re undiagnosed and suspect MCAS, pursue blood and urine testing ASAP – don’t ignore it!
#3. When in doubt, I try Benadryl*
*Unless you’re allergic to Benadryl. Or the doctor says you shouldn’t. I am not a doctor. Please talk to your doctor about any medication changes.
Like most people, I thought Benadryl was just for rashes and sinuses, until I started using it like duct tape for mast cell disease. Dye-free, of course.
Vomiting, dizziness, IBS – Benadryl!
Muscle pain, bone pain, migraine – Benadryl!
Rage, anxiety, doom – yes, can you believe it?! Benadryl!
Please remember, mast cells release many more chemicals other than histamine. That being said, histamine is most notorious for a reason. Again, it can affect every organ of the body. Learning about histamine is a great starting point and nothing taught me more about the effects of histamine than Benadryl. Every time I got relief from taking Benadryl, I knew I could attribute the symptom to my mast cells releasing too much histamine.
Of course, the goal is to identify and avoid the trigger in the first place, not pop Benadryl like Tic Tacs, if you can avoid it. (Some MCAS patients do need Benadryl infusions to survive and protect their organs.) I try to take Benadryl as sparingly as possible to avoid rebounding and losing effectiveness. There often are better antihistamine options than Benadryl for daily treatment. However, Benadryl can be incredibly helpful in understanding mast cell disease in acute situations.
So interesting!! I just read another post about MCAS and this rounded out my understanding nicely. Thank you! Off to buy some Benadryl!! The anxiety thing is trippy – I’ll be interested to see if it works for me. Good note about using sparingly though! 😊
Thanks for reading! Make sure to get dye-free Benadryl. Good luck!
I will for sure, thanks!
This is so brilliantly succinct! Thank you for explaining so simply. This will help me communicate to family and friends about mast cells.
Thank you. I’m so glad!
I found that Benadryl (H1 histamine blocker) and or pepcip (H2 receptor histamine blocker) shifted the histamine response to th H3 receptors in the brain, resulting in more severe depression, anxiety, and feelings of hopelessness. This reaction has been researched and documented. The H3 histamine receptor in the brain is thought to be correlated with schizophrenia and narcolepsy. I prefer mast cell inhibitors like NeuroProtek, a luteolin supplement in olive oil. Oil is necessary for the body to absorb luteolin. It got me off Gastrocrom!
Unfortunately quercetin and olive oil are high salicylate and many MCAS patients are salicylate sensitive. Do you have a link to research on the histamine receptor shift?