While on a family vacation in Europe, Keith suddenly felt lightheaded and fell in the bathroom. At the time, he didn’t think much of it. Years later, he and his wife were renovating a bathroom in their house, and he fell down the stairs after getting lightheaded. He was lucky enough not to be injured, but it was a wakeup call to finally talk with his doctor about what he had been experiencing.
How do you know when feeling lightheaded or dizzy is part of a larger medical condition? For those living with Parkinson’s disease, multiple system atrophy (MSA), or pure autonomic failure (PAF), dizziness, blurry vision, or leg buckling can be symptoms of a separate, manageable condition called neurogenic orthostatic hypotension (nOH).
Symptomatic nOH affects approximately 20% of people diagnosed with Parkinson’s. When a person without nOH stands up, gravity naturally pulls the blood to the lower part of the body, lowering blood pressure. When this happens, the nervous system typically releases a chemical called norepinephrine, which signals the blood vessels to tighten, or constrict. This raises blood pressure and makes it easier for the body to pump blood back up to the heart and brain. For a person living with nOH the body does not release enough norepinephrine upon standing. As a result, blood vessels are unable to tighten as they should, preventing the blood from being pumped back up to the head and upper torso.
Keith had already been diagnosed with Parkinson’s, so when he opened up to his neurologist about the symptoms he had been experiencing, his doctor was able to perform tests and ultimately diagnosed him with nOH. Since nOH is a manageable condition, Keith was able to start on a treatment regimen that worked for him.
If you or a loved one is living with a neurodegenerative condition and can relate to Keith’s story, consider taking the following steps in preparation for speaking with your doctor.
- Track Your Symptoms: Use a tracker or notebook to write down your symptoms and how often you experience them. Capturing these details can help your doctor recognize potential patterns and make an informed diagnosis. To make tracking easier, a symptom tracker is available at nOHmatters.com.
- Make a List of Questions: Writing down questions for your doctor in advance can be helpful for many patients. Consider asking things like, “Given that I have a nervous system disorder and my symptoms occur after standing or changing positions, could I have nOH?” and “What symptom management options are available?” A list of additional questions to consider can be found in the doctor discussion guide on nOHmatters.com.
- Talk About the Impact. Discussing the impact your symptoms are having on your daily life, such as interfering with your hobbies or limiting your activity, can provide valuable insight for your doctor and allow them to work on a symptom management plan with you.
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