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It sounds like you may be describing a hard “wearing-off” period between doses, when the benefit of carbidopa-levodopa fades and your Parkinson’s symptoms return. Some people experience stiffness, tremors, weakness, anxiety, pain, or a very disturbing feeling during this change.
Keep a short record of when you take each dose, when the difficult feeling begins, what symptoms appear, and when you eat. Food—especially protein—constipation or slow stomach emptying can sometimes affect how consistently levodopa is absorbed.
Definitely show that record to your neurologist. Your neurologist may consider changing the timing or size of your doses, using a longer-acting form, or adding another treatment to smooth out the “off” periods. Do not take extra doses, change your schedule, or stop carbidopa-levodopa suddenly on your own.
If by “coming off” you mean trying to discontinue the medication completely, that is different and must be done gradually under your neurologist’s supervision.
Coming off carbidopa/levodopa hard — known as "wearing off" — is one of the most challenging parts of managing Parkinson's. You're definitely not alone in finding it really difficult and distressing.
Here are some strategies worth discussing with your doctor: Medication Timing & Dosing
- Ask your doctor about taking doses Show Full Answer
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