Is it More Than Parkinson’s Disease? Julie’s Journey to Diagnosis.
(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.”
- Educate yourself and find the right treatment. Doctors go through years of training, but that doesn’t mean you can’t do your own research. Doing your own research and becoming your own advocate empowers you to raise questions or concerns with your physician until you find the right treatment plan for you. You can find more information on nOH here.
- Stay positive. A positive mindset has been crucial throughout my diagnosis. I find that having something to look forward to helps me a lot, whether that is a shopping outing or spending time with my grandkids.
- Have a support system. It can sometimes feel like you’re alone navigating your condition, but having a support system in place can make all the difference. I’ll forever be thankful for my incredible doctor who helped to accurately diagnose my nOH and to my husband of 32 years who has been by my side every step of the way.
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:— Parkinson’s disease (PD), a neurodegenerative disease that causes slowness in muscle movement as well as shaking in the hands
— Multiple system atrophy (MSA), a Parkinson’s-like disorder with more widespread effects on the brain and body
— Pure autonomic failure (PAF), a neurodegenerative disease that results in frequent drops in blood pressure upon standing
— Dopamine beta-hydroxylase deficiency, a condition where the body cannot make enough of the hormones that help regulate blood pressure
— Non-diabetic autonomic neuropathy, an inability to maintain blood pressure upon standing that can be caused by a number of rare diseases
Effectiveness beyond 2 weeks of treatment has not been established, and your doctor will decide if you should continue taking NORTHERA.
IMPORTANT SAFETY INFORMATION
- Do not take NORTHERA if you have a known allergy to NORTHERA or its ingredients.
- NORTHERA may cause high blood pressure when lying down, which could lead to strokes, heart attacks, and death. To reduce this risk of supine hypertension, take your late afternoon dose of NORTHERA at least 3 hours before going to bed.
- Neuroleptic malignant syndrome (NMS) is a rare but potentially life-threatening side effect reported with NORTHERA. Call your doctor right away and go to the nearest emergency room if you develop these signs and symptoms: high fever, stiff muscles, movements that you cannot control, confusion or problems thinking, very fast or uneven heartbeats, or increased sweating. NORTHERA should be stopped immediately if NMS is diagnosed.
- If you have coronary artery disease, irregular heartbeat, or heart failure, NORTHERA may worsen the symptoms of these disorders. Call your doctor if your symptoms become worse.
- NORTHERA may cause allergic reactions. Stop taking NORTHERA and contact your doctor right away, or go to the nearest emergency room if you experience any signs or symptoms of an allergic reaction such as: fast heartbeat, nausea, vomiting, swelling, trouble breathing, hives, or rash. NORTHERA contains tartrazine (FD&C Yellow No. 5), which may also cause an allergic reaction, especially if you have had a reaction to aspirin.
- The most common side effects with NORTHERA are headache, dizziness, nausea, and high blood pressure.
- Taking NORTHERA with other medications may cause side effects. Tell your doctor if you take prescription or over-the-counter medicines, vitamins, or herbal supplements.
- You should not breastfeed during treatment with NORTHERA.
- If you plan to become or are currently pregnant, talk to your doctor as it is not known if NORTHERA could harm your unborn baby.
- Take NORTHERA the same way each time, either with or without food.
- If you miss a dose of NORTHERA, take your next dose at the regularly scheduled time. Do not double the dose.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit or call 1-800-FDA-1088.
- Freeman R. Clinical practice. Neurogenic orthostatic hypotension. N Engl J Med. 2008;358(6):615-624.
- Bryarly M, Phillips L, Fu Q, et al. Postural orthostatic tachycardia syndrome: JACC focus seminar. J Am Coll Cardiol. 2019;73(10):1207-1228.
- Isaacson SH. Managed care approach to the treatment of neurogenic orthostatic hypotension. Am J Manag Care. 2015;21(13 Suppl):s258-268.
- Freeman R, Wieling W, Axelrod FB, et al. Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Clin Auton Res. 2011;21(2):69-72.
- Gibbons CH, Schmidt P, Biaggioni I, et al. The recommendations of a consensus panel for the screening, diagnosis and treatment of neurogenic orthostatic hypotension and associated supine hypertension. J Neurol. 2017;264(8):1567-1582.
- Ha AD, Brown CH, York MK, Jankovic J. The prevalence of symptomatic orthostatic hypotension in patients with Parkinson’s disease and atypical parkinsonism. Parkinsonism Relat Disord. 2011;17(8):625-628.
- Goldstein DS, Sharabi Y. Neurogenic orthostatic hypotension: a pathophysiological approach. Circulation. 2009;119(1):139-146.
- Palma JA, Kaufmann H. Epidemiology, diagnosis, and management of neurogenic orthostatic hypotension in Parkinson’s disease: evaluation, management and emerging role of droxidopa. Vasc Health Risk Manag. 2014:10:169-176.
- NORTHERA [package insert]. Deerfield, IL: Lundbeck.
©2021 Lundbeck. All rights reserved. NORTHERA is a registered trademark of Lundbeck NA Ltd. DRX-B-100471