Multiple System Atrophy with Orthostatic Hypotension

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Multiple System Atrophy with Orthostatic Hypotension
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    Gail H @gail-h

    The Condition I Didn’t Know Existed in People with Parkinson’s and Diz

    I’ve had symptoms of dizziness and lightheadedness for most of my adult life. I would experience extreme dizziness after I stood up, and the feeling that I was going to black out was always around me like a cloud. I tried to hide my symptoms at work, and I would spend most of the day sitting. These symptoms made my world smaller and smaller. I started staying in my house more and more. I started to avoid driving. If I was at the grocery store and the lines were too long, I would just leave. Staying home isn’t like me at all. I was an elementary school music teacher, and I play the recorder and harpsichord and conduct two choruses. I also have two wonderful children and two grandchildren. But I didn’t have the right vocabulary to talk about my symptoms with my doctor. I was diagnosed with Parkinson’s disease, a neurodegenerative disease that causes slowness in muscle movement as well as shaking in the hands, 17 years ago. After I found out, I thought this dizziness and feeling like I was going to black out was just part of the disease. After I retired, I moved to Florida and started seeing a new neurologist who was very savvy. I told him about my symptoms, and he took my blood pressure sitting and standing. My previous specialist would only take it while I was sitting down. It turned out that I had a condition called symptomatic neurogenic orthostatic hypotension (nOH), which causes a significant drop in blood pressure when changing positions or standing. That’s why I kept having that feeling like I was going to pass out. I was so relieved when I found out my symptoms were something other than Parkinson’s. It felt like I wasn’t crazy. My doctor had me start doing things like drinking more water and adding more salt to my diet to help with my symptoms. Then, he told me about a clinical trial for a drug called Northera (droxidopa), which was being studied in people like me who have symptomatic nOH. I was so glad to know there was something I could try, to see if it would help manage my symptoms of dizziness and feeling like I was going to black out. So I decided to participate in the clinical trial. When I first started Northera, I saw my doctor every day or every couple of days to titrate my dose until we got it just right. I still do the non-medication things to help manage my symptomatic nOH, like carrying water everywhere I go, adding more salt to my diet (even though I don’t love salty food!) and sleeping with the head of my bed elevated. But Northera has helped relieve my dizziness and the feeling that I’m going to black out. I don’t experience those symptoms now when I stand up. For anyone reading this, know that Northera may not work the same for everyone, and you have to make sure you tell your doctor about any other medicines, vitamins and supplements you use, to make sure Northera won’t cause any side effects. My doctor was also very clear that I should take my last dose at least three hours before bedtime because it can cause high blood pressure when lying down, which could cause serious side effects, and if not managed correctly, could lead to stroke, heart attack or death. Be sure to talk to your own doctor about the potential risks of Northera. I want people to know that just because you have Parkinson’s, that doesn’t mean you can’t manage the symptoms of nOH. For a long time, I didn’t have the right words to describe what was happening to me, so I want to tell my story in case others don’t know how to talk to their doctor or what to ask for. USE 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. Please see the full Prescribing Information, including Boxed Warning for supine hypertension, or go to You are encouraged to report negative side effects of prescription drugs to the FDA. Visit, or call 1-800-FDA-1088. ©2019 Lundbeck. All rights reserved. DRX-B-100300