In early August 2023, PMD Alliance hosted movement disorder specialist Dr. Salima Brillman for a webinar on the topic of neurogenic orthostatic hypotension (nOH). nOH is a drop in blood pressure when the body changes positions. This drop in blood pressure usually happens within a few minutes after standing up from a seated or laid down position. In addition to being physically unpleasant by itself, nOH can result in fainting or falls. Falling can seriously injure someone with Parkinson’s disease (PD), and may even lead to death.
Dr. Brillman discussed how to monitor your blood pressure at home. When someone reads a blood pressure measurement, the top number is the systolic pressure, and the bottom number is the diastolic pressure. The amount of change in blood pressure matters more than the raw numbers from a blood pressure measurement. Dr. Brillman defines a dangerous drop in blood pressure as being a 20 point systolic drop, and/or a 10 point diastolic drop.
For example, an initial reading of 120 over 80, followed by standing up, the blood pressure drop would be concerning if the upper number became 100 or lower, and/or if the lower number became 70 or lower.
Dr. Brillman addressed the symptoms or sensations to look out for and the importance of identifying medications that can contribute to nOH. And, she gave this advice – Remember to take precautions when standing up; go slowly, keep a hand on something stable for balance, and remember to stay hydrated. Dr. Brillman urged people with PD who are experiencing possible symptoms of nOH to bring the issue up with their doctor as soon as possible.
A recording of the webinar is available on the PMD Alliance YouTube channel
You can find relevant resources on managing blood pressure with PD on the Stanford Parkinson’s website:
Dr. Brillman discussed neurogenic orthostatic hypotension (nOH), answering many questions. She didn’t have a prepared presentation or designated question-and-answer section, and instead offered her advice in real time. Below are my notes on the webinar, with timestamps added at points where Dr. Brillman changed topics.
“The Dangerous Drop: Neurogenic Orthostatic Hypotension”
Speaker: Salima Brillman, MD, movement disorder specialist, Palo Alto
Webinar Host: Parkinson and Movement Disorder (PMD) Alliance
Webinar Date: August 3, 2023
Summary by: Jordan Dagan, Stanford Parkinson’s Community Outreach
(3:10) DEFINING nOH
Dr. Brillman began by defining neurogenic orthostatic hypotension. Hypotension refers to low blood pressure, and orthostatic means this happens upon changing position. Neurogenic means the drop in blood pressure comes from an underlying neurological cause, such as Parkinson’s. All together, nOH can be described as “due to a neurological problem, the person’s blood pressure drops when they change body positions, usually from sitting to standing up.”
When someone reads a blood pressure measurement, the top number is the systolic pressure, and the bottom number is the diastolic pressure. The amount of change in blood pressure matters more than the raw numbers from a blood pressure measurement. Dr. Brillman defines a dangerous drop in blood pressure as being a 20 point systolic drop, and/or a 10 point diastolic drop.
(5:10) THE AUTONOMIC NERVOUS SYSTEM
The autonomic nervous system regulates many functions we’re not consciously aware of, such as breathing and heart rate. For people with PD, this system is often dysregulated, and this is called dysautonomia. Dysautonomia can lead to nOH. nOH is most common in people with multiple system atrophy (about 4 in 5 people), and moderately common in people with PD (about 1 in 5 people). People with Lewy body dementia are somewhere in between these two, in instances of nOH. Dr. Brillman said that so far in the scientific/medical literature, she hasn’t seen any correlation between increased instances of nOH and type of PD.
(10:00) WHAT HAPPENS IN THE BODY DURING A BLOOD PRESSURE DROP
When someone stands up from a laying or seated position, blood is pulled into our legs and feet by gravity. Reflexes send a neurotransmitter signal, constricting blood flow in our legs and feet. This sends blood back to our upper body, including our brain, heart, and lungs. In someone with PD, the neurochemistry and autonomic nervous system don’t send enough signal to constrict blood flow. The upper body doesn’t get enough blood, and therefore not enough oxygen. This can cause a variety of symptoms.
(12:00) SYMPTOMS AND SENSATIONS TO WATCH OUT FOR
Dizziness and fainting
Shortness of breath
Changes in vision (tunneling, graying, or blacking out)
Pain in the large muscles of the neck and back – “coathanger pain”
Confusion, fuzzy thinking, or “spacing out”
Fatigue and weakness
Weakness in the legs, possibly collapse
Nausea or a sense of near-vomiting
One webinar attendee described her loss of blood pressure upon standing “like all the blood was draining out of my feet, and a sense of profound weakness.”
Most symptoms occur within 3 minutes of standing up, but symptoms may occur up to 20 minutes later. A person with PD could stand up, begin walking, then collapse minutes later. A fall could lead to broken bones, a concussion, and/or torn ligaments or tendons. Dr. Brillman emphasized that hospitalization often leads to further complications for people with PD, including needing rehabilitation. Someone with PD could lose their mobility, their independence, and possibly their life, if they aren’t aware of nOH.
(33:25) MONITORING BLOOD PRESSURE AT HOME
Dr. Brillman emphasized that the change in blood pressure upon a position change is what is important, not the raw numbers from a blood pressure reading. You can use a manual or digital blood pressure monitor if you want to keep an eye on it. Blood pressure naturally rises and falls, but the goal when treating nOH is to avoid symptomatic changes in blood pressure. Changes in blood pressure are different for everyone, and everyone has a range of blood pressure that doesn’t cause any symptoms. nOH symptoms often become more serious over time, so it does need to be treated, especially if you’re at risk for a fall. If your blood pressure is too high, Dr. Brillman suggests standing up slowly and being careful in case of a drop. If your blood pressure is too low, she says that drinking a full glass of water may decrease symptoms. Always follow your doctor’s recommendations for monitoring your blood pressure and/or recording it if needed.
(16:40 and 40:30) DIAGNOSING nOH AND TALKING TO YOUR DOCTOR
nOH is diagnosed by reading a person’s blood pressure changes when they move from laying down to sitting, and from sitting to standing. Dr. Brillman says that many people with PD she talks to say their doctor has never taken their blood pressure standing up, but a seated blood pressure reading is not sufficient to determine if someone has nOH. She urges people with PD to ask for specific blood pressure readings when asking their doctor about nOH, when talking to a doctor or EMT after a fall, and when deciding whether to discharge from the hospital. This could be vital for determining if it’s safe for a person to stand, walk, and be independent without falling. If you’ve experienced symptoms, do not wait until you’ve fainted or fallen to talk to your doctor!
(19:00 and 45:30) She described how to screen for nOH, at home or with your doctor present:
- Lie down for several minutes, and take resting blood pressure.
- Sit up, and wait for 2 to 3 minutes, then take sitting blood pressure.
- Stand up, and wait for 2 to 3 minutes, then take standing blood pressure.
- nOH may be diagnosed if there is a significant drop in blood pressure upon changing positions, especially a 20 point systolic drop, and/or 10 point diastolic drop.
- The heart rate stays the same during position changes. This can help distinguish between nOH and drop in blood pressure from another cause, such as dehydration.
(16:40) MEDICATION COMPLICATIONS IN TREATING nOH
Dr. Brillman described some reasons current medications must be taken into account when treating nOH. If a person has high blood pressure when they are resting, their doctor may prescribe them medicine to lower their blood pressure. However, upon standing, their blood pressure drops even further due to this medication. If the person takes their medicine to lower their blood pressure when experiencing the symptoms of nOH, their blood pressure may drop further, making the problem worse.
(24:00) Dr. Brillman says that your cardiologist and neurologist should work together to identify if the medicines you’re taking could contribute to nOH. Some people need medication for high blood pressure in order to protect their heart and kidneys, but this might be switched to a lower dose, or taking the medication in the afternoon or evening instead of in the morning. Dr. Brillman pointed out that though high blood pressure should also be treated, a fall from a drop in blood pressure could result in an emergency, and this may be a more pressing short-term problem than high blood pressure. She also said that over time, PD generally results in a lowering of blood pressure, and it’s important to discuss what medicines you’re on with your doctor periodically, to see if the list should be updated. These considerations should be taken on a case-by-case basis, because everyone is different.
(29:00) Dr. Brillman listed some medications that may contribute to nOH, some of which are not specific to treating PD. Some medications for bladder or urinary control can cause low blood pressure, as well as some antidepressants. carbidopa/levodopa and immediate-release dopamine agonists are often used to treat PD, but can cause drops in blood pressure. She suggests people with PD consider the medications they’re on that might be aggravating nOH, and possibly switching to extended-release versions if available.
(20:10) WHAT MAKES nOH WORSE
Dr. Brillman advised caution when in hot or humid weather, as these often make nOH symptoms much worse. She said that nOH happens more in the morning hours, and if people are eating a lot of carbohydrates at once, or if they’re drinking alcohol. nOH may happen after eating a meal. It may occur often, or it might get better for a long time and then come back, especially if there is a change to your diet, lifestyle, or medications.
(22:00) NON-PHARMACOLOGICAL TREATMENTS FOR nOH
Keeping hydrated is very important for people with nOH! Dr. Brillman suggested asking your/your loved one’s cardiologist if you could add salt to your diet, because a combination of water and salt can help increase your blood pressure. Soups and V8 juice are a good idea. Gatorade and Pedialyte are okay, but be cautious of high amounts of sugars and carbs. Adding something salty with a sports drink can rehydrate you more. Juices contain too much sugar, and may increase the chances of a blood pressure drop.
Because large meals can contribute to drops in blood pressure, Dr. Brillman advises eating several smaller meals throughout the day.
An abdominal binder, corset, and/or compression socks or stockings can help increase blood flow to your head and organs. Using the large muscles in your legs to “march” in place before standing can help warm them up and increase blood flow, preventing a dangerous drop in blood pressure. Clenching the muscles in your buttocks can also help increase blood flow before standing.
(32:50) PHARMACOLOGICAL TREATMENTS FOR nOH
Dr. Brillman listed droxidopa (brand name Northera) and Midodrine as the only FDA-approved drugs specifically for treating nOH. She also offered florinef, mestinon, and atomoxetine as possible options.
(47:50) WHAT TO DO IF YOU/YOUR LOVED ONE FAINT(S)
Assess whether you/your loved one is in need of immediate emergency care. If anything is injured, go to the doctor, especially if the person hit their head. After initial treatment, Dr. Brilman advised to consider the situation in which you/they fell. Has there been a recent medication change? Has the person been sick recently? Remember to take precautions when standing up; go slowly, keep a hand on something stable for balance, and remember to stay hydrated.