Does everyone have blood in their legs?!

For the past five years, I felt like I was going to lose consciousness any time I was walking or standing. After a year of not passing out, I just tried to ignore the feelings of death and sit whenever possible.

I never strongly pursued autonomic testing, because I hadn’t heard of any appealing dysautonomia treatment options. While beta blockers can lower heart rate and blood pressure, they also can increase mast cell activation. IV fluids always lessen my overall symptoms, but my veins are difficult to stick and react very painfully to IVs. (Drinking water is not as effective.) My symptoms never outweighed the risks of a port or PICC line, a convenient way to deliver fluids and medications.

After autonomic testing, my new MCAS specialist recommended fludrocortisone, a medication that helps control the sodium and fluids, to address my “heavy” feeling, which I was beginning to recognize throughout the day thanks to the tilt table. On the internet, I read that fludrocortisone can raise your blood pressure. My blood pressure spikes when I stand, so I worried the medication would only make it worse. I decided to try it anyway.

My first agility competition on fludrocortisone seemed unremarkable at first. I sleepily walked the course and warmed up my poodle. When it was our turn, we crushed it, winning first place. Maybe a coincidence, I thought. I celebrated with my friends, but something felt off.

I COULD FEEL MY LEGS.

Remember how I didn’t know my legs were numb from the tilt table until I laid back down? I didn’t know I’d been running agility on numb legs until I took the fludrocortisone. My legs didn’t throb and swell afterwards. I leisurely visited with my friends. I took my first picture holding my dog while standing.

And then I realized Quixote and I had just qualified for the AKC National Agility Championship!

BUT WAIT, SO THIS WHOLE TIME I DIDN’T HAVE BLOOD IN MY LEGS?!

I squeezed my 11-year-old pup and fed him some extra chicken. Then I continued to fume.

SOOOO EVERYONE HAS BLOOD IN THEIR LEGS?! AND NOBODY TOLD ME WHAT IT FEELS LIKE! WHAT ELSE AM I MISSING?

Turns out, all organs like blood and oxygen. I had never considered low blood volume might be my problem. My blood pressure actually decreased, probably because my body had been overcompensating from hypovolemia. Over the next few weeks, I felt like I was learning to operate a new body. I really underestimated the impact of dysautonomia on my poop tube. My muscles still brace for pain when I go to the grocery store and I have to remind myself my strength has improved.

AND OH YEAH, TEAM QUIXOTE IS GOING TO THE AKC NATIONAL AGILITY CHAMPIONSHIP IN TULSA ON THURSDAY!

Get in the car; we’re going on a virtual road trip! And by car, I mean YouTube. Please subscribe and buckle up for a good time!

May 2021 Update: MCAS remission eliminated my dysautonomia symptoms completely. Dr. Weinstock estimates MCAS accounts for 1/3 of POTS cases. MCAS can increase vasodilation and blood vessel permeability. While fludrocortisone was helpful, addressing MCAS was the key improving my circulation, reducing my heart rate, and lowering my blood pressure.

The tilt table and other tortures, I mean, tests

When I heard my new specialist wanted to do autonomic testing, I was scared. I’d heard too many stories about people fainting and vomiting during autonomic testing. Dysautonomia made me so dizzy in the first years of my MCAS diagnosis that I was forced to crawl across my condo and couldn’t make it to work on time. But I had never fully fainted from it. I was able to lay down before my body fell down.

Standing increased my blood pressure, and sometimes my heart rate. When the pandemic began, the lines at grocery store deterred me from getting food. Luckily, I can now afford delivery, but some items are not available. If I have to go into a I store, I lean on a shopping cart to avoid losing my balance. After falling down the stairs several times, I stopped using them completely. (On more than one occasion, I’ve been asked if I avoid the stairs because my service dog is too short. Why is it so hard to accept invisible disabilities?!)

Tilt Table Test

Knowing fully well you may be minutes away from passing out or vomiting, the first task after being strapped to the Frankenstein table is to be totally calm to get a baseline reading of your vitals. After five years of MCAS and one epidural blood patch, I excel dissociating from my body. Super handy for medical procedures; not so great for processing emotion. (See also: reasons I need therapy.)

The goal of the tilt table is to measure your blood pressure and heart rate when you go from lying to standing. By using the table, instead of your muscles, we can better understand if the brain signals to the body are lagging.

“Okay you ready?” the doctor asked. I nodded and she pushed the button. The table motor chugged as it hoisted me up to 70 degrees. I braced for the worst.

As the table stopped rising, the pull of gravity took over. Within that split second, I decided:

YEP, I’M FUCKED UP.

What I remember is the heaviness of my body and the doctor’s incessant questioning. I felt like I was wearing a Kevlar suit and about to be sucked through the ground. I decided I would fight the tilt table with deep breathing and calm thoughts. As everything became quiet, dark, and slow, I tried to focus my eyes on a spot on the carpet like they teach you in yoga to keep your balance. Same thing, right?

What actually happened was documented by video. The doctor asked, “How are you doing?”

I responded, “Good.”

I WAS NOT GOOD.

“Any dizziness?” she asked.

“No, I just feel super heavy,” I said.

STOP ASKING ME QUESTIONS.

“Any headache?” she asked.

“Super, super heavy,” I groaned.

SHUT UP. I AM BEING CRUSHED INTO A TINY DIAMOND.

Instead of speaking my mind, I politely closed my eyes.

Within a few minutes, the pressure subsided and I just felt weak.

After 10 minutes, the doctor lowered the table and asked, “How are you feeling?”

“My legs are all tingly,” I said. “There’s pain in my muscles.” Then I realized the pain was the blood rushing back into my legs. They had been numb the whole time I was standing.

“Your heart rate did not jump. This is not a diagnosis of POTS,” my specialist explained. “What we are finding is you had an adrenergic response meaning your blood pressure jumped and you were symptomatic.”

Although I expected the blood pressure rise, I was surprised my heart rate stayed normal. The doctor explained that my results supported the evidence that when I am triggered, my body maintains the reaction. In other words, I get stuck in flight or flight.

I’M NEVER FUCKING STANDING AGAIN.

“So we’ve got three more tests,“ she said.

“Cool,” I lied.

Deep Breathing Test

When my specialist explained the deep breathing test, breathing in and out deeply for one minute with the help of a computer screen, I was like:

I TRAINED FOR THIS MY ENTIRE CHILDHOOD IN THE ASTHMA CLINIC. AND I PLAYED THE TUBA.

I was feeling pretty confident after surviving the tilt table. While my deep breathing performance was perfection and my heart rate was normal, my mast cells protested.

“I’m cold,” I interrupted the doctor’s explanation.

“Like suddenly cold?” she said.

“Yes,” I said.

She retrieved a blanket.

“My chest hurts,” I said, remembering that bronchospasms can often feel like a heart attack.

“This test is like blowing up a teeny, tiny balloon,” my doctor explained. “So, you know how much pressure you have to put on a teeny, tiny balloon?”

“Yeah, until my jaw pops out,” I replied.

*NERVOUS LAUGHTER*

Luckily, my jaw did not pop and my CSF blood patch did not blow, but honestly, this was my least favorite test because worried about my Ehlers-Danlos syndrome (EDS) complications. My results showed a slightly delayed sympathetic response, unlike my tilt table test. Perhaps, my body was starting to wear out from testing. This test triggered a wicked headache that built for 12 hours.

Quantitative Sudomotor Axon Reflex Test (QSART)

After the surviving the tilt table, a little electricity didn’t fluster me at all. Four small plastic cups were taped to forearm, foot, and leg to measure amounts of sweat, or sympathetic response, generated by a mild electrical current. Sympathetic nervous system

“It does feel a little prickly, but I think you’ll be fine,” my doctor said. “How are you feeling?”

“Prickly,” I said.

“Maybe that’s an understatement,” she said.

“Yep,” I said.

WHO THE HELL DESIGNED THESE TESTS?!

For me, this test was tolerable, not really any worse than a MCAS skin reaction. My sweat was slightly low in a few places. No surprise, as I often skip my deodorant stick with no repercussions.

My doctor diagnosed me with hyperadrenergic dysautonomia. On a different day, could I have been diagnosed with another type, like POTS? Very likely. MCAS reactions vary day to day, impacting the autonomic nervous system in different ways. Just like in MCAS testing, autonomic testing is a snapshot of your body. It doesn’t capture how the condition can fluctuate. I also tested negative for small fiber neuropathy (think tiny melon ball-like scoops of skin).

The tests validated my need for treatment–although not beta blockers, because they can exacerbate mast cell reactions. Aside from treatment, there’s a lot of value in a formal diagnosis for other providers to understand my body’s reactions and to support disability accommodations. For example, one doctor was so obsessed with my high blood pressure that she dismissed my CSF leak. Now I can explain it as dysautonomia.

After my long day of autonomic testing, my friend asked, “Do you want to go out and celebrate?”

“Yes,” I said, suffering from one of the worst migraines of my life.

TAKE THE DAMN PICTURE.

May 2021 Update

MCAS treatment eliminated my dysautonomia symptoms completely. I no longer struggle to stand, use stairs, or get proper blood flow throughout my body. In fact, I have become a competitive figure skater!

Dr. Weinstock, a mast cell specialist, estimates MCAS causes 1/3 of POTS cases.

While autonomic testing helped me understand dysautonomia and salt, fluids, and fludrocortisone helped me short-term, pursuing MCAS treatment to reduce and eliminate my symptoms was a better use of my resources (e.g. time, energy, and money). If I had known then what I know now, I wouldn’t have done autonomic testing.

How dog agility helps me enjoy life with chronic pain and disability

Agility competitors are encouraged to develop a warm-up routine to prepare themselves and their dogs physically and mentally for the course.

My routine with Quixote looks like this:

I walk into the building with a pocket full of cheese and hope. Quixote heels, smiling and looking up at me with loving adoration as we make our way to the practice jump.
Quixote waits patiently in a sit stay, as I set the jump bar to 8”. I release him, and he sails over the jump and into perfect sit recall. I reward him with a tiny ball of hand-warmed mozzarella. We repeat this four times in each direction.
We move closer to the ring entrance, so I can watch the other dogs, while Quixote runs figure 8s around my legs for pinches of cheese.
I start to feel dizzy, so I sit down even though all the other competitors are standing, and the floor covered in dog hair–I’m allergic to dogs, but I’m more allergic to people. Quixote squares up to me and sneezes in my face.
I worry I’m forgetting the course, so I stand back up to see over the gates. My blood pressure skyrockets. Immediately, I feel like I’m going to pass out and pee my pants, even though I just went the bathroom. I know the penalty for a dog peeing in the ring, but what happens if a human pees in the ring?
I sit back down and Quixote begins barking for attention. “High five, bow, spin,” I tell him, while handing out treats and questioning why I wake up at 6:30 am on Saturdays to get tormented by my immune system, my nervous system and a 10-pound poodle.
I feel like I’m dying. At this point, I’d rather pass out than forget the course, because at least then I might be unconscious and miss the collective gasp and murmur of the spectators. I forget to offer a hand for Quixote’s high fives, so he starts slapping me in the face for treats. I stand back up.
Quixote turns his back to me and starts smiling and wagging his white pom-pom at other handlers in hopes of better treats and attention. I am reminded that if I don’t focus on him, he’s going to publicly shame me in the ring by pretending I don’t exist.
“Quixote, you’re such a good boy!” I squeal, handing him a treat. My body is screaming, dumping chemicals in my bloodstream, and I know he can smell it. Unlike my service dog, he sometimes acts as if my disease contagious.
“You’re the BEST boy!” I exclaim, not knowing who I’m trying to convince, and stuff cheese into his mouth until the team before us nears the end of the course.

As I push through the metal gate and enter the ring, I disconnect from my body and focus entirely on his–four shaved paws, two almond eyes, and an eager tail. A deep, electronic voice commands, “GO!” and adrenaline surges through every cell in my body, knowing each foot placement and hand movement counts. As Quixote sails over the 5-foot A-frame and smashes the teeter totter, I race to direct the next obstacle. When I run out of breath to yell commands, I switch to clapping. When my legs weaken, I send him across the ring with an outstretched arm, just like we practice. In that one-minute run, there is no time process my pain or limitations.

My favorite run with Quixote in 2020. It doesn’t always go this smoothly!

To most spectators, I’m sure I look like the average, non-disabled competitor. They don’t notice my tremoring hands struggling to put the leash on Quixote when our run is done. Or the allergic welts from clapping. They don’t see the rashes from the parking lot sun or the weakness of my arm as I try to open my car door. They don’t see me collapsing on the seat or vomiting on the pavement, as the chemicals from my mast cells strangle my organs. They don’t see me shaking from chills and lying flat, trying to get blood back into my arms and legs.

I’m sure if they saw all that they’d say, “Why the hell do you do that to yourself?”

I compete in agility because overall it makes me feel better. Once the chemicals are dumped in my body and the inflammation has subsided, my body feels more comfortable. I am actually more reactive and injury prone when I don’t participate in agility with rest and accommodations.

More importantly, agility competitions are an immense source of joy and connection in my life. Dogs are amazing painkillers and comedians. Although my toy poodle howls at me when I make an error, the agility community loudly cheers me on no matter what. My agility friends help me move my crate, hold my dog, advocate for fragrance-free bathrooms, and ensure I am safe. They know I can’t stand for briefings and relay important information. They understand I have to save all my energy for those two one-minute runs. When I go home to rest for two days to heal my muscles and joints, I replay the videos of my runs and relive the joy and cheering all over again.

Quixote, me, and his agility title ribbon — Quixote’s first AKC agility title in 2016

My body has changed a lot since I started competing in agility. My disabilities vary day to day. I haven’t overcome my disease; I’ve learned to adapt. My dog doesn’t care. He just wants to have a good time and eat chicken. As much as I love the ribbons, Quixote reminds there is more to life than our accomplishments.

Some mornings before competitions, my whole body screams. I encourage myself to show up and promise myself I can always go home. I almost always show up in pain. Thanks to accommodations and support, I almost always leave with joy and a happy pup.

Author: Hell's Bells and Mast Cells