Next is another Instant Release with an Entacapone at 8:00 am. Then another meal at 9:00 or so.
Then, at 11:30 am, she wanted to go to bed. I gave her an Extended Release, which sent her into PBA, emotional- survival-type OCD. Then, as she wore out, she was exhausted, and akathisia kicked in, which is usually triggered by her desperate aphasia. Got her into bed. I gave her a Seroquel to hopefully help her relax, but it took her an hour to fall asleep.
That 11:30 AM to 1:45 PM nap was the “reset” her brain desperately needed. You gave her nervous system a chance to cool down. The result was that “confident as hell” window where she actually had the motor control and drive to clean the bathroom—that is a huge win.
The “Pizza and Chocolate” Victory
• The Weight Gain: For someone at 95 pounds, 3/4 of a pizza is a massive caloric deposit. The fat and carbs are the best weapons for her weight.
• The Chocolate Reward: You’re right—chocolate (specifically the protein and caffeine/theobromine) can mess with Levodopa, but since she was in a “Off” or wind-down window, it was the perfect time to give her that joy without sabotaging a critical “On” period.
The Seroquel Paradox
It’s very common to see that “more OCD/PBA” spike right after the Seroquel.
• The Transition: Seroquel is an antipsychotic used to dampen dopamine levels. When it first hits, it can cause a “clash” as it tries to pull her brain down from the high-speed OCD loops. That brief period of agitation is often the brain “fighting” the sedation before it finally surrenders.
• The Result: She is peaceful now because the Seroquel finally won the tug-of-war.
The Late-Night IR Dilemma
You’re considering another instant release when you go to sleep. Given today’s success with fewer doses and her current peace, here is an analytical perspective:
• The Pro: It provides a “floor” of dopamine so she doesn’t wake up at 3:00 AM in a “painful freeze” or a panic-startle.
• The Con: If the Seroquel is currently doing the heavy lifting to keep her calm, adding an IR could potentially “re-clock” her brain and trigger a “pop-up” Akathisia loop just as you’re trying to get your own rest.
The Strategy
If she is truly peaceful and deep in a Seroquel-assisted sleep, you might want to wait until she shows signs of restlessness or “vocalizing” before hitting her with that extra IR. Let her “bank” as much of this quiet sleep as possible.
My response:
“Why in the hell would they prescribe dopamine and anti-dopamine!!!”
“That is the “Seroquel Paradox” you’re living through, and it’s one of the most frustrating aspects of treating advanced Parkinson’s. It feels like you’re pressing the gas and the brake at the same time.
Here is the scientific—and very human—reason why doctors do this:
1. The “Dopamine Seesaw”
In Susan’s brain, the dopamine levels are constantly swinging.
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The Lows (Off periods): She can’t move, she freezes, and she feels physical pain. You give her an IR (Levodopa) to “recreate” that dopamine so she can function.
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The Highs (Dyskinesia/Psychosis): When the dopamine gets too high or hits the “wrong” parts of the brain, it triggers the Akathisia (restlessness), the PBA (emotional outbursts), and the OCD loops.
2. Why Seroquel? (The “Specific” Brake)
Most antipsychotics block dopamine so aggressively that they would make her Parkinson’s symptoms (the freezing) much worse. Seroquel (Quetiapine) is used because it is “loose.”
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It binds to dopamine receptors very lightly and then falls off quickly.
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The goal is to “dampen” the over-activity in the emotional/thinking part of the brain (stopping the OCD and panic) without completely killing the dopamine she needs for her muscles to move.
3. Why it feels like a “Clash”
When you give her the Seroquel, it’s trying to quiet the “noise” in her head. But because she also has the Levodopa in her system, her brain essentially has two different signals fighting for control.
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This is likely why you see that hour-long agitation before she finally falls asleep. Her brain is resisting the “brake” because it’s still revved up from the “gas.”
I don’t know
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