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It's Alive

My brother used to say that when we'd hear my dad pull into the garage.

"It's alive."

It was a little mean, but so was my dad. And it was funny even when he did it around my dad because Dad mellowed with age. Isn't that what one hopes? That the "mean" ages out of people? I'd noticed the really sweet older people I know go the other way, though.

My mom, who was not necessarily mean, would say pretty outrageous things to her home health nurse. As if the poor woman didn't know she was overweight.

I had to instruct my elderly mother to refrain from calling her nurse "a cow" while she was still in the room.

Needless to say, and what that has to do with akathisia is this: I've been cautiously optimistic.

It's been weeks, and I felt like I finally had a handle on the daily bouts of akathisia.

My windows were opening wider, each day. I was slowly reincorporating my old life back into my routines. I was coming down on medications that had impacted other quality-of-life issues because akathisia was just…gone.

I'd gone to see a brain injury specialist. Learned possible causes and developed a ton of different treatment protocols for mitigating the pain and horror and sometimes the restlessness (motor only) of akathisia.

I also went to an endocrine specialist.

It turns out, the medications that mess with your dopamine receptors and serotonin etc. do a number on vital organs as well.

I didn't know the pancreas had neurotransmitters, but they do. "Hello metabolic syndrome!"

I didn't know the medications I was on destroyed my ability to absorb—not produce—thyroid hormones. "Hello 'clinically normal' thyroid blood levels and what's poppin' every, single symptom of hypo (low) thyroid!"

I DID know about the gut-brain, but how fun, after eliminating all processed foods, gluten, dairy, most carbs, sugar, "gums" (locust bean gum, guar gum, etc.) and a buhzillion other foods that

cause inflammation in the body/brain/gut, I've been feeling akathisia inching its way back into my daily life.

I'd been cutting back on a beta blocker so I could start weight training again, but that experience still is very much like this for me:

It felt gone. I even said it out loud to a couple of people.

There's nothing like gut-wrenching pain to make you "a believer" again. In anything and everything. I got cocky.

"I said it out loud, and god heard me."

"I said it out loud, and Satan heard me."

"I said it out loud and didn't knock on wood."

"I'm being punished for that _____ I wrote or thing I did or said OR…"

Or akathisia, as my husband and I have often said, is a moving target and brain damage isn't "fixed" overnight. Or even in a few months. Almost a year. More than a year, actually. Not the reprieve, the hard work, daily work.

The trauma of a chemical brain injury comes from the destruction of your trust in the medical system. Even if you have great, supportive doctors like I did—doctors who aren't so busy covering their asses so you won't sue them—who do whatever they can to help you, it was an easily-won faith from the time we were children, to trust our doctors. Trust the System.

Now, even docs I like terrify me. The hospital feels like the most unsafe place I can go, even if it's for something unrelated to akathisia.

The way I was treated, mistreated, by more than a couple "specialists" in the movement disorder field of neurology—they did the most harm.

Contemptuously slapping my chart with "personality disorders" and invalidating my subjective experience while simultaneously arguing with their own literature on how akathisia can present left me feeling more traumatized than withdrawing off medications, which I feel like I've never really recovered from back in 2011.

I have a TCBI.

Traumatic Chemical Brain Injury.

And that doesn't just go away. I learned this the hard way when today, I finally stopped blaming my outer world for the rising levels of agitation, the blind rages, the despair, and the suicidality, the begging god to make it stop, the total devastation.

Looking back on the long reprieve and realizing it's back, returning like a houseguest who never took its guitar, so you knew, on some level, it might return. (A nod to The Goodbye Girl, there, and yes, showing my age.)

And it doesn't mellow with age. It gave me a reprieve and I thought I'd found my way out at last. But it was simply planning on my cautious optimism, my hope, and my near-certainty.

Like any dynamic, "living" thing, akathisia must feed on something.


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