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Dad’s Levodopa Timing and Side Effects

Last updated: September 2022

Levodopa was seen as a miracle drug when it first became available to Parkinson’s patients. Since its emergence, it’s become the main treatment for the disease, allowing patients to replace their dopamine supply, and regain more control.

My dad was diagnosed with Parkinson’s in 2013, during which time he began taking a moderate amount of levodopa. Over the first few years he slowly needed to increase his dosage. And then he got deep brain stimulation (DBS) – a surgery that implants electrodes in the brain, and utilizes technology to intercept or change certain brain signals.

Over the past decade, Dad has taken too much, too little, and just the right amount of levodopa. And finding the right balance has been tricky for him.

Dad’s medication strategy

Levodopa dosages vary widely from patient to patient. The appropriate dosage is typically determined by evaluating the symptoms, side effects, how long it takes the dose to work, and how long it lasts for each person.1

Dad told me he likes to experiment with the timing of his dose. In the morning, his body functions fairly well without the medication, so he usually drinks his coffee and has his breakfast without it.

As the day progresses, he takes his first dose (often around noon). And from that point on, he takes either half a pill or a full pill about every 2 hours. When he takes a large dose of the medication, he shakes intensely for about 10 minutes while his body gets used to the medication. And then the drug takes its full effect, allowing him to function at his best.

At the end of the day, he typically lets his body go back to neutral, coming off of his medication before going to bed. Sometimes, without warning, the drug wares off faster than usual. And then dad has to take an extra dose. He thinks this could be because of something he ate (protein seems to make the dosage less effective). Luckily, this doesn’t happen very often.

Levodopa after DBS

Dad recently explained that his DBS procedure significantly changed the amount of levodopa that he needs to take.

He told me that before the procedure, he was taking either 1 or 2 pills per session. Two pills lasted somewhere between 2 and 3 hours. But after the surgery, he was able to cut the dosage in half (which seems to be fairly common among DBS recipients). And those dosages last him somewhere between 1 and 2 hours.2

Dad’s side effects

Prior to DBS, Dad experienced a tremendous amount of dyskinesia while coming off of levodopa. And, while he isn’t alone in experiencing this symptom, it negatively impacted his ability to walk and maintain his independence while he was coming off of the drug. This is one of the things that prompted him to explore the possibility of getting DBS.

It’s been 3 years since he received the DBS operation. The post-levodopa dyskinesia is entirely gone. But it remains to be seen whether it’ll come back again in the future. For right now, Dad is doing well and feeling grateful for having undergone the DBS procedure. And he continues to look for the right levodopa timing to optimize his lifestyle.

The details that are outlined here describe my dad’s experience with levodopa and should not be interpreted as medical advice. Please consult a healthcare professional to determine the appropriate treatment method for yourself.

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