Author: Hell's Bells and Mast Cells

3 tips I wish I knew before becoming a MCAS badass

#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.

When healing takes forever

Brain juice leaks are a real pain in the neck. Literally.

You know that feeling when you think you’ve recovered from an illness or injury, and then all of a sudden you projectile vomit? That’s how I felt two weeks ago when I stood up and realized my headache was gone. Hooray, no more bedrest! I leaped around my condo tackling all the things I hadn’t been able to do. Less than ten minutes later, a web of pain shot up my neck and into my skull. I paused, rolled my neck, yelped, and puked.

Although the CSF leak had healed, the injury severely strained the right side of my neck. Searing pain sent me back to bed. I cursed my luck – I can accept a sports injury, but a muscle strain while on bedrest?!

I know I should be grateful that I am healing, but honestly, I feel empty and trapped. I’ve mastered the Zen of kidney stones and anaphylaxis, but 38 days of pain and isolation are wearing on me.

Some people are graceful about pain and bedrest. Good for them. I turn into a monster. Constant pain induces desperation and bedrest invites me to ruminate about my mortality. Books and movies are temporary distractions at best. Nothing brings me joy, not even prednisone. I tried practicing gratitude, but acknowledging “at least I’m not a giraffe” did not make me feel better.

Over the last few years, I’ve learned three things about my shitty feelings:

  • Pain and mast cell reactions can induce shitty feelings.
  • Fighting shitty feelings is futile.
  • Shitty feelings are temporary.

I know this pain and these feelings will go away, even though it’s hard to be patient with recovery when I’ve already faced a shitstorm of health issues. So tonight, I will pop my muscle relaxant, wrap myself in a blanket, and embrace my shitty feelings.

“Simply be present with your own shifting energies and with the unpredictability of life as it unfolds.” – Pema Chödrön

“Acknowledge your shitty feelings when shitty things happen.” – Hell’s Bells and Mast Cells

P.S. Pain also makes me swear more. Not sorry. It’s a natural form of pain relief.

Brain juice is leaking into my ear

Day 23: I’m stranded on an island of pillows and sheets. I think the leak has stopped, but to be safe, I must stay here for a few more days.

While most Minnesotans are floating on lakes, here I lie on bedrest for a cerebrospinal fluid (CSF) leak that started last month.

Day 1: My right ear is taking on fluid. Just the one ear. No sneezing, no coughing, but maybe the start of a headache.

 Day 2: I pooped, then fainted. At least, I was able to pull able my pants before I fainted. I do not want to die like Elvis. 

Over the next two weeks, the pain at the base of my skull and behind my right ear became more severe, like someone had swung a bat at the back of my head. None of my mast cell medications provided relief. As an experienced medical detective, I retraced my steps and remembered, the day before my symptoms started, I had a chiropractic adjustment. The chiropractor had used her activator, a small metal device, on right side of my neck, just below my skull, the same spot as my headache.

My chiropractor specializes in Ehlers-Danlos syndrome (EDS), a connective tissue disorder associated with mast cell disease. Over the past year, I’ve experienced more joint subluxations and my chiropractor gentle guides my bones back in place. However, I know neck adjustments, even gentle ones, can be risky for EDS patients.

Day 13: I think my brain sack is leaking, I’m just not sure how to tell anyone.

Fully aware nobody likes a self-diagnosing patient, I emailed the facts to my primary care doctor without my hypothesis. She responded, “I have no recommendations at this time. Try more [mast cell medications].” At this point, the pain was causing me to vomit. I only felt relief after laying down. Classic symptoms of a CSF leak.

Day 14: The ER doctor is pretty sure I won’t die tonight. 

In ER, my doctor was concerned about a stroke or vascular dissection. When I suggested a CSF leak, he said that wasn’t a possibility, because I hadn’t experienced a head trauma. When I told him about my chiropractic adjustment and EDS, he paused and then left room, I think to Google. My MRI and bloodwork came back normal, and he sent me home. I really should have asked to see the neurologist on call.

Day 16: I yelled, “Brainjuice! Brainjuice! BRAINJUICE!” But the pain did not stop.

I instituted my own bedrest until I could see a neurologist. It’s not like I really had a choice. The ER doctor prescribed pain medication, but laying down was the most effective way to relieve the pain. My friends with EDS were also convinced I had a CSF leak, while the rest of the world considered I may be losing my sanity.

Day 21: The neurologist says I probably have a CSF leak.

The neurologist believes my CSF leak will heal on its own with more bedrest. It is nice to be validated, but mainly I am tired of enduring this medical circus. My healthy friends aren’t sure what to say, and neither am I. I’ve accepted becoming allergic to the sun, delicious food, and most people. But now if I poop too hard my brain may come through my ear? That’s where I draw the line, folks.

So, I’ll be in bed for the next few days, trying to focus on my gratitude for the Internet. The Internet that provides me with unlimited movies, TV shows, and books without having to lift my head. The Internet that allow me to share my jokes on social media, so I don’t have to laugh alone and continue to question my sanity. The Internet that provides me with research papers and fellow patients who urge me to advocate for myself when my brain juice leaks.

Related blog posts

2022  May Update

Evidently, my body decided to observe EDS Awareness Month by blowing my epidural blood patch. How? Not surfing, skating, nor spinning–I blew my patch torquing my neck for an ab exercise. While I’m pissed it popped from something I don’t even enjoy, I am incredibly lucky my patch lasted 4 years, not to mention for 6 months of wild remission adventures.

My original CSF leak probably could have been avoided if I had better MCAS treatment sooner. Mast cell chemicals can cause both connective tissue fragility and intracranial hypertension (high pressure in the brain)–a dangerous water balloon situation. While an EDS knowledgeable chiropractor contributed to the leak, I wouldn’t have even seen a chiropractor if my mast cells were under control.

It has been much easier managing the symptoms of a CSF leak in remission than in 2018.