(BPT) - A fall, a broken wrist and a misdiagnosis. That’s how Julie’s story started.
Julie shares her story on getting to an accurate diagnosis for her ongoing symptoms and how she’s currently managing her condition. She hopes her experience can help others so that, together with a healthcare provider, they can find the solutions that work for them.
Heart of the Matter
“Five years after my PD diagnosis, I had a loop recorder implanted in me as a result of multiple strokes. Several months later, I experienced sudden cardiac arrest requiring that I have a pacemaker implanted. To say it was a challenging few years would be an understatement,” Julie says.
Throughout those first few years and prior to her PD diagnosis, she had been experiencing light headedness, fatigue and bouts of blacking out after she would stand or try to walk across the room. “As I began to experience additional issues with my heart, I assumed those feelings of light headedness and fatigue were probably due in large part to my heart condition. It wasn’t until my cardiologist had me undergo a stress test that he noticed my pulse was exceedingly high and my blood pressure was alarmingly low.”
After reviewing the test results, and in addition to her symptoms of fatigue and feeling of blacking out or fainting, her doctor diagnosed her with postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder.
Not Seeing Improvement
“I was put on medication for POTS, but I still had issues with my blood pressure dropping upon standing.” Julie goes on to say, “I was still feeling dizzy and lightheaded, and I had even fallen and broken my elbow.”
Her symptoms became unsettling and embarrassing for her. She even became fearful of going out to a restaurant, worried that when she stood up, she might fall. “I wondered if people thought I had a drinking problem because I was so unsteady and would have to hold onto something when standing,” Julie says. “My symptoms were having a negative impact on my life.”
The Doctor Who Changed Everything
It wasn’t until she had to change physicians that she finally received some answers.
“My insurance changed, which caused me to have to see a new cardiologist who happened to specialize in autonomic disorders, including Parkinson’s disease. From my new doctor I learned that I didn’t actually have POTS, which explained why the medication wasn’t working.” After Julie’s new doctor performed a tilt table test, among other examinations, he determined, based on the results, that she was living with a condition called neurogenic orthostatic hypotension (nOH).
nOH affects about 1 in 5 people living with Parkinson’s disease. 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, causing symptoms of light headedness, fatigue and the feeling of blacking out, among other symptoms.
A Path Forward
“With the proper diagnosis, my doctor recommended I start on a medication called NORTHERA® (droxidopa).” Please review the full Use for Northera and Important Safety Information below, including a boxed warning for Supine Hypertension.
“Of course, NORTHERA might not be right for everyone and results may differ, so I would encourage others to speak with their physician about treatment options that might be right for them.”
Advice for Others
After her long journey of diagnoses and misdiagnoses, Julie has learned so much. “I’ve come up with pointers that I share with everyone I meet who may be going through a similar situation as I did. I hope sharing these pointers more broadly can help even more people who might be living with Parkinson’s disease and nOH.”
USE OF NORTHERA (droxidopa) CAPSULES (100 mg, 200 mg, 300 mg)
NORTHERA (droxidopa) is a prescription medication used to reduce dizziness, lightheadedness, or the “feeling that you are about to black out” in adults who experience a significant drop in blood pressure when changing positions or standing (called symptomatic neurogenic orthostatic hypotension (nOH)) and who have one of the following:
Effectiveness beyond 2 weeks of treatment has not been established, and your doctor will decide if you should continue taking NORTHERA.
IMPORTANT SAFETY INFORMATION
WARNING: SUPINE HYPERTENSION (this is high blood pressure while lying down)
When lying down, elevating the head and upper body lowers the risk of high blood pressure. Check your blood pressure in this position prior to starting and during NORTHERA treatment. If you experience high blood pressure, talk to your doctor about your NORTHERA treatment.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit or call 1-800-FDA-1088.
©2021 Lundbeck. All rights reserved. NORTHERA is a registered trademark of Lundbeck NA Ltd. DRX-B-100471
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