Off Periods and Biological Clock Malfunctions

Before I was diagnosed with Parkinson’s disease seven years ago, I hadn’t heard the term “off periods.” After getting involved in the Parkinson’s community, I discovered that the term is frequently used.

One reader asked, “Why do my symptoms get so bad in the early evening?” My response was, “It’s an off period.” But that answer might be wrong.

Not everyone with Parkinson’s disease experiences off periods. They are more common the longer you have Parkinson’s and the longer you take levodopa.

An article published in the Journal of Patient-Centered Research and Reviews noted that, “Wearing off of Parkinson’s disease medication is common, but triggers and coping strategies for this transient phenomenon are poorly understood.”

After more than 2,000 Parkinson’s patients completed a survey about these periods, researchers concluded that, “Although OFF periods are common, the individual experiences of OFF vary. This knowledge could be used to develop new counseling strategies for OFF periods in people with Parkinson’s disease.”

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An off period refers to the experience of worsening symptoms and is often attributed to medication failing to provide relief. Although this may be true in some cases, it didn’t fit my situation. There seemed to be something else at work triggering the diurnal shifts to the horrible experience of suffering for hours.

Off period triggers have been identified in studies as stress, anxiety, depression, tiredness, and fatigue. I couldn’t pinpoint a distinct, consistent external trigger. It just happens every evening, and some days are worse than others.

Switching medications and adjusting dosages and timing didn’t make the evening troubles go away. The distress occurs every day regardless. Nothing has worked to prevent this entirely, but I found that I could alter its intensity and effects on my life. That’s what TBM, my three-tiered self-management strategy of threshold management, brain rewiring, and mindful movement, is for. Maybe I can’t fix this broken biological clock because it’s part of the disease, but I can find ways to live better.

The surprise was finding that circadian rhythm malfunctions are often described as part of the disease. After seven years of treatment and more than a dozen doctors, no one has discussed circadian rhythm malfunctions with me.

Circadian rhythm is established as our body undergoes behavioral and physiological changes while switching between night and day. It is an alternating cycle of sleep and wakeful activity. Parkinson’s disease can cause diurnal fluctuations in which sleep is triggered during the day and waking at night. This disrupts homeostasis and may even exacerbate disease progression.

Parkinson’s is a multisystem disease, and a growing body of evidence suggests that circadian rhythm disturbance is a part of that. We need to understand more about the fluctuation of sleep-wake cycle dysregulation and its impact on motor disability and the autonomic nervous system. Besides the dopamine replacement treatments, strengthening the circadian functions through a healthy lifestyle, physical activity, and melatonin therapy could potentially improve quality of life for Parkinson’s patients and slow disease progression.

In a previous column, I described a breakdown in the brain’s ability to regulate and moderate homeostasis as a critical part of Parkinson’s. Circadian rhythm dysfunction is part of this chronic homeostasis dysregulation. The most common side effect is sleep disruption.

Since medication has no effect on my evening off period, I suggest that it is tied to this diurnal homeostasis dysregulation. It’s not so much about the meds not working (although that plays a part eventually), but rather our brains flipping the chemical wake-sleep switches at unusual and inconvenient times. Added to this abnormal wake-sleep switching, there is often a cascade effect triggering an intensification of Parkinson’s symptoms. Thus, we apply the label “off period.”

When I write about the usefulness of TBM, I am speaking about tools that can help to limit this cascade effect. Sure, medications help. But Parkinson’s is first a brain disease. Retraining my brain includes relearning how to deal with off periods. It’s been an important part of finding my way to a better quality of life, despite the limits of a chronic illness. I exercise my brain out of the chaos of diurnal disruption and back to homeostasis. I try to do this every day.

Circadian rhythm dysfunction better explains my off period timing and symptoms than a medication losing potency. It fits the new model of the disease that incorporates a second dopamine center and its role in bodily homeostasis. It explains why I must endure this chronic suffering every evening. Understanding that helps me to better manage this chronic illness.

Many references were consulted for this column. For a complete list, please visit my website.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.