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The Catch-22 of Coming Off a Dopamine Medication
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ROB'S CORNER This week, medically, we have both been a mess. Heather's recovering from her own thing. I'm tapering off a med. Between the two of us we've got maybe one functional nervous system, and we're sharing custody of it. My neurologist warned me before we started the taper. Coming off this one, she said, might make you feel bad. Not sick. Bad. Just, bad. Which is not a diagnosis you can Google your way out of, but at least she told me to expect it instead of letting me think I'd lost my mind. So now I'm flat. Not sad, not upset, just flat, like someone turned the color down on the TV. And here's what I'm actually proud of: I've been saying it out loud. "Hey, I feel off, and I don't fully trust what I'm reading right now." Because the alternative is going quiet and letting Heather try to reverse-engineer my mood from across the room, and she's got enough on her plate this week without doing that math too. --- HEATHER'S TRANSLATION Sunday. Rob says something. My face does the thing. He reads the thing. Now we're having an argument about a conversation that, as far as I can tell, never actually happened. This is my life. My face has never once kept a secret. If I'm thinking it, my eyebrows already told on me before I opened my mouth. Normally Rob and I have decades of reading each other, decades, not literally thirty years, but it sure feels like it, so it evens out. This week it did not even out. This week he's tapering off a medication that's flattening his own emotional read, I'm three days post-op and running on fumes, and somewhere in there my "ugh, what are we even going to eat for dinner, nothing sounds good and I don't feel like cooking" face got mistaken for "I'm-mad-at-you" face, twice, before either of us figured out what was actually going on. Turns out there's a name for what he's going through. Dopamine agonist withdrawal syndrome. DAWS. I did not know this existed until this week, which tells you something about how underdiscussed it is, because it's not some rare fluke, it hits 15 to 19 percent of Parkinson's patients coming off this kind of medication, and the more comes out, the worse it gets. Anxiety, agitation, fatigue, and that flat thing Rob described days before I found a single study to back him up. So here's the two-for-one lesson from our emotional rollercoaster of a week: if someone you love is tapering off a dopamine medication, watch for quiet, not just loud. And maybe warn them ahead of time that your face has opinions of its own and they are not always about them. Would've saved us this week. --- CITED MEDICAL FACT Dopamine agonist withdrawal syndrome is defined as a severe, stereotyped cluster of physical and psychological symptoms that correlate with dopamine agonist withdrawal in a dose-dependent manner, and it's been reported in roughly 15 to 19 percent of Parkinson's patients who taper or discontinue a dopamine agonist (Nirenberg, 2013, Drug Safety; Rabinak & Nirenberg, 2010). --- ONE RESOURCE LINK If your family is navigating Parkinson's and sleep, medication, or mood questions like this one, our Parkinson's Learning Path is a good place to start: https://robbinsnestalliance.com/pages/parkinsons-learning-path --- |
Heather at Robbins Nest Alliance
Free weekly newsletter for caregivers navigating brain injury, CTE, dementia, Parkinson's, and PTSD. Real information. Peer-reviewed. From people who've been where you are.
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