Researching My Way to a Diagnosis

This post was developed in collaboration with Lundbeck

Sometimes your professional skills come in handy when it comes to your personal life. In the case of Bob, his lifelong job as a professor at a local university helped him understand which condition had confounded him with symptoms for so long.

Back in 2000, Bob began to feel lightheaded going up and down stairs or walking a long way across the university campus. Also, he would struggle standing up at different times, explaining that he felt like he had a weight on his head.

To compensate, he developed subtle techniques to hide the fact that he was feeling lightheaded. “I would lean back against a table or chair and try to look natural. I was embarrassed to talk openly to my colleagues about my symptoms and didn’t want them to be concerned, so I would often make excuses after we had lunch, telling them, ‘Go ahead. I’ll catch up.’ I knew that I needed time to stand up slowly and steady myself.”

Bob went to a lot of doctors to figure out what was wrong with him, including a neurologist, endocrinologist, pulmonologist and cardiologist. They each tried to fix individual symptoms, but no one put all the pieces together.

So, as any good professor would do, Bob began to do research on his own to figure out what his symptoms could mean. He learned for the first time about the nervous system disorder pure autonomic failure (or PAF). When he brought this up to his neurologist, who is also a movement disorder specialist, his doctor conducted additional tests and eventually confirmed the PAF diagnosis, as well as diagnosed him with an associated condition called symptomatic neurogenic orthostatic hypotension (symptomatic nOH). Bob’s doctor explained that PAF interferes with his body’s ability to control blood pressure and that when he stood up, his blood pressure would drop and remain low, which is what made him dizzy and lightheaded.

Bob finally felt like he was on a track to start managing his symptoms and began a treatment option for symptomatic nOH, called NORTHERA® (droxidopa). NORTHERA is a prescription medicine that has been shown to improve symptoms of dizziness, lightheadedness or the feeling that you are about to black out in adults. Please review the full Use for Northera and Important Safety Information below, including a boxed warning for Supine Hypertension. NORTHERA might not be right for everyone, and it’s important to speak with your doctor about what might be right for you.

In addition to prescribing NORTHERA, Bob’s doctor also recommended ways that he could help control his nOH symptoms, including drinking a lot of water, eating lighter meals with fewer carbohydrates (a challenge for pasta-loving Bob!) and adding more salt to his food. 

As a way to help others in similar circumstances, Bob became an nOH Champion for Lundbeck (manufacturer of NORTHERA). In this role, Bob is part of a network of patients and care partner ambassadors dedicated to educating and supporting others living with or caring for someone who has symptomatic nOH. By becoming an nOH Champion, Bob shares his story and lets others know that they need to be an advocate for themselves, starting by logging their symptoms and directing them to helpful resources, such as a symptom tracker.

Everyone’s situation is different, but Bob certainly can serve as an inspiration of persistence and fortitude when it comes to advocating for your own health. If you don’t feel that you’re getting the answers you need, don’t give up and keep doing your due diligence until you’re satisfied with the answers and treatment plan.

Always remember that you’re your own best support system.

USE OF NORTHERA (droxidopa) CAPSULES (100 mg, 200 mg, 300 mg)

NORTHERA 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

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.

  • 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.

For more information, please see the full Prescribing Information, including Boxed Warning for supine hypertension, or go to www.NORTHERA.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

References

  1. Freeman R. Clinical practice. Neurogenic orthostatic hypotension. N Engl J Med. 2008;358(6):615-624.
  2. Mabuchi N, Hirayama M, Koike Y, et al. Progression and prognosis in pure autonomic failure (PAF): comparison with multiple system atrophy. J Neurol Neurosurg Psychiatry. 2005;76(7):947-52.
  3. Low P. Neurogenic orthostatic hypotension: pathophysiology and diagnosis. Am J Manag Care. 2015;21(13 Suppl):s248-57
  4. Heims H, Critchley H, Martin N, et al. Cognitive functioning in orthostatic hypotension due to pure autonomic failure. Clin Auton Res. 2006;16:113-120
  5. Goldstein DS, Sharabi Y. Neurogenic orthostatic hypotension: a pathophysiological approach. Circulation. 2009;119(1):139-146.
  6. 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.
  7. NORTHERA [package insert]. Deerfield, IL: Lundbeck

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