Amantadine day 2

I was noticeably more light-headed all day, but in a slightly loopy way and thankfully not a stand-up-and-black-out way like I was last night.

My ears have been screaming EEEEEEEEE! at me all day. Seriously. EEEEEEEEEE!

I had two video calls at work where I could see in real time how much I was fidgeting and rocking and twitching.

 
It’s breathtakingly exhausting spending all my energy trying to hold myself still, so I was very glad to climb under a blanket and a cat after work and nap on the couch (see photo).

Amantadine isn’t a psych drug, which would usually require me to endure weird (or uncomfortable or downright miserable) side effects for a few weeks while I waited for its efficacy to manifest or not manifest itself. So I’m in uncharted territory here as far as what to expect and how long to tolerate it before I decide whether or not the drug is doing its intended job.

 
Originally an antiviral used to prevent Influenza A, Amantadine is now primarily an antidyskinetic used to help control the palsies and involuntarily movements of Parkinson’s disease and my close personal friend tardive dyskinesia.

 
The only other tremor-control drug I’ve tried is the anticonvulsant Gabapentin, which didn’t seem to do anything for me except on the morning when I accidentally took two doses and literally felt like my heart was stopping and my eyes were crossing so hard that my optic muscles might rupture. So, yeah. I immediately started weaning myself off of THAT trainwreck-in-waiting.

 
If I were to judge Amantadine after just these two days I’d say it’s an abject failure as a tremor suppresant because I’m exponentially more twitchy and tremory. My increased orthostatic hypotension (my tendency to experience blackouts or near-blackouts when I stand up) is pretty alarming to me. And I disconcertingly need to monitor myself for a potential skin rash called Livedo Reticularis, which my neurologist and I both agree would be a fun, indeterminately ethnic drag name but that he warned me is also a very dangerous development potentially worthy of a trip to the ER.

So for now I sit (and twitch and rock and tremor) and wait. I think I’ll give it a week before I decide if these side effects are worth enduring—or if I even think the drug is working. I’ve lived with and learned how to manage tardive dyskinesia for 15+ years, so I’m in a devil-you-know/devil-you-don’t holding pattern until I decide which devil to live with (spoiler alert: I’ll probably pick the one with the cutest butt).

In the mean time, I have a kitty to snuggle up with …

Another crash

I was supposed to leave this morning for my annual summer vacation to visit friends in D.C. and stay at their best-porch-on-the-planet beach house in Rehoboth, DE, but I had to cancel a few weeks ago due to work issues. A lot of cool things have popped up on my calendar here in Cedar Rapids this weekend though, so I'm more or less OK with missing my trip.

But I still missed work this morning thanks to a rough descent into a bipolar depressive episode that started last night. I talk a lot about being bipolar on here, and every time I think I should stop someone messages me out of the blue to thank me for being so open and honest about it. Enough people have confided in me the stories of their struggles with mental illness that I sometimes worry I won't remember everyone in my mental checklist of kindred, struggling spirits. I've developed close, supportive friendships with a lot of these people though, and our check-ins and conversations and even drives across town just to give hugs are so dear and so valuable to me that I'll probably never stop talking about my own struggles.

So here's this morning's report: I woke up at 6:00 in a motivational black hole with a fiery headache and enough disorientation that I knew enough to skip the gym—which is huge because some days working out is the only thing that keeps me human—and to let my boss know that I'd come in after lunch, if at all today. Then I went back to the kind of non-sleep that feels like you're staying awake getting more and more exhausted compounded by the stress of feeling worried about getting more and more exhausted. But when I woke up around 11:00 my head was clear enough that I could look at the episode objectively and summon the coping and pushing-through skills I've learned over the last decade and I showered and ate and made it to work, where I've been surprisingly productive ... albeit profoundly exhausted.

So to all the people I know who are dealing with mental illness and to all the people I don't know who are dealing with mental illness and to all the rest of you curious enough about my struggles today to have read this far: You will fight this battle all your life. You will get meds that don't work, you will get meds that actually make things worse and you will find meds that you'll notice start to make improvements ... though you'll spend ages waiting cynically for them to fail you. In the mean time, learn what helps you stabilize yourself and what helps you push your way out of the wet wool blankets and the rolling fogs that trap you. As soon as I felt coherent this morning, I texted one friend who right now is in a bottomless depressive episode so we could both not feel alone in our struggles and I texted another friend who as far as I know is not having an episode just so I'd know that someone who deeply understands what I'm going through is at the very least thinking about me. And then I picked out a shirt that says carpe diem on it and I know that it's totally goofy bordering on stupid, but if I'm wearing a shirt that means something to me on a certain day or in a certain situation, I feel compelled to go out in the world and show it to everybody.

And after what my head put me through this morning, I need everyone to know—no, I need to SHOW everyone—that I'm seizing the hell out of the rest of my today.

The horrors of Depakote

Facebook is reminding me that seven years ago today was my first attempt at functioning in public (specifically at work) on the hardcore anticonvulsant Depakote:

Depakote either works wonders for you or it destroys you, and I was DEFINITELY on its no-fly list. The pharmacist who filled my first prescription actually pulled me into a consultation room, warned me about the horrible, terrifying things I might experience, and literally held onto my hand as she talked to me. I'll never forget the look in her eyes that was a mix of both kindness and visible concern.

[Don't get me started on the hack Chicago psychiatrist who'd prescribed it without saying any of this to me and who obviously made zero attempt to set up a line of communication should I have problems in my first terrifying, confusing days and weeks.]

Once I got home that night, I took my first dose with much trepidation, went to bed on the guestroom bed my parents slept in on their visits so I could maybe feel somehow close to them if I needed to ... and right on schedule I was immediately flooded with such graphic nightmares of being hunted and murdered over and over that they're seared in my brain and I can still replay them in my head with absolute clarity.

That was a Friday night, and all weekend I'd hallucinate intruders in black hiding in my apartment and wake up screaming when I tried to sleep. But psych drugs can have side effects like these as you ramp up, and I was at least self-aware enough to know (or be pretty sure I knew) that the hallucinations weren't real and the nightmares would eventually go away.

Which they never did. I was taking Depakote with the more established anticonvulsant Lamictal (which I'd been on for years) and at least one other drug (but probably two or three) that I can't remember, and in the weeks that followed it seemed to be the tipping point from barely managing my bipolar swings to living in terrifying hallucinations and falling into daylong blackouts where I'd come to riding the Red Line north to parts of Chicago I'd never been to or sitting on a bench in the Lincoln Park Zoo without my coat or my phone.

I seem to recall that seven years ago today I was able to hold myself together at work, but I do know that the abovementioned blackouts caused me to start missing entire days of work. I can't remember how long I gave Depakote to finally level out in my head and maybe start working, but I do remember it never did. And my hack psychiatrist eventually had me quit it cold-turkey as he threw some other random drug at me. And I was too meek and confused and overcome with self-doubt to challenge him on any of it.

And it was all awful. Just ... awful.

But it DID give me an opportunity to make a big-gay-musical pun (that wasn't half bad, imho) about it on Facebook seven years ago today. So there's that.

And it took another four years before I found my magic psych cocktail that's kept me stable and functioning and able to laugh at everything I went through. Especially that awesome big-gay-musical pun.

And if you're struggling through your own parade of trial-and-error psych meds (hopefully not with that hack psychiatrist at the helm), try to be be patient and diligent and even optimistic about your adventures. I made it. There's every chance you will too.