In mid-November the Davis Phinney Foundation hosted a webinar on Neurogenic Orthostatic Hypotension (nOH), or low blood pressure due to dysfunctioning of the autonomic nervous system, which is commonly experienced by people with Parkinson’s Disease, Lewy Body Dementia, and multiple system atrophy (MSA).

The speaker, movement disorders specialist Salima Brillman, explained what nOH is and shared lifestyle changes and medication treatments. Dr. Brillman answered questions from the moderator and listeners throughout the webinar. Read more to learn what Dr. Brillman emphasized.

Here are some points Dr. Brillman repeated, which to me means they are the most important take-aways from her talk:

• You should be treated for nOH even if you only become dizzy or lightheaded once in a while because it only takes one fall to injure yourself badly. Serious injury requiring hospitalization may lead to a string of events that could result in death.

• If you have nOH, raising the head of your bed 30 degrees is a must because you may develop supine hypertension at night.
  • Dr. Brillman was not explicit about the risks of supine hypertension, but I found online that it is “a potential risk factor for end organ damage and poor cardiovascular outcomes, though its cerebrovascular effects are still poorly understood.” Sounds like we should heed Dr. Brillman’s advice!

• Also, people get caught up in blood pressure (BP) numbers but that is not the goal. Stabilizing BP at normal BP (120/80) for someone with nOH is not going to happen. BP is going to bounce up and down throughout the day. The goal is to improve symptoms, whatever your symptoms are.

I found it most interesting that:

• There are a lot more symptoms of low blood pressure than just dizziness or lightheadedness. In fact, some people don’t experience dizziness or lightheadedness at all, but they still have nOH.

• The lifestyle changes that improve the symptoms of nOH can never be stopped, even if/when you find a medication regimen that works. The two are equally important in controlling symptoms.

A couple quick tips:

• When you are acutely dizzy, find a place to sit immediately. The fastest way to bring up your BP is to drink a big glass of cold water. 
• Alternatively, if your BP is high, stand up and walk around or eat a large carb-loaded snack to bring it down.

There’s lots more good information in this webinar and in my notes! You can watch a recording of the webinar on the Davis Phinney Foundation YouTube channel.

I’ve added this webinar to other great sources of information about nOH on the Stanford Parkinson’s website.

And now, on with my notes…

– Denise

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“Neurogenic Orthostatic Hypotension (nOH) and Parkinson’s”

Speaker: Salima Brillman, MD, Parkinson’s Disease and Movement Disorders Center of Silicon Valley

Moderator: Melani “Mel” Dizon, Davis Phinney Foundation Director of Education & Content

Webinar Host: Davis Phinney Foundation (DPF)

Webinar Date: November 15, 2022

Summary by: Denise Dagan, Stanford Parkinson’s Community Outreach

   

Question: Mel asked how Dr. Brillman became interested in movement disorders and especially neurogenic orthostatic hypotension (nOH).

Dr. Brillman has a passion for nOH because it is underrecognized and undertreated. She is always happy to educate and answer question.

Question: Mel suggested Dr. Brillman explains nOH as if nobody listening has ever heard of it. She asked specifically if OH is the same as nOH.

Dr. Brillman explained that OH stands for orthostatic hypotension, which is a change in blood pressure due to postural change. 

OH is an umbrella term. Under that, can be three causes or types of OH:

• Non-neurogenic issues
  • Dehydration
  • Cardiac problems
• Iatrogenic [Definition: relating to illness caused by medical examination or treatment.]
  • Medications for
    • High blood pressure
    • Parkinson’s
    • Antipsychotic
    • Antidepressants
• Neurogenic (nOH) [The topic of today’s webinar.]
  • Due to a neurological condition, like Parkinson’s, MSA, Lewy Body dementia, etc.
  • Drop in BP upon standing or sitting up of 20mm of mercury in the systolic (top) BP number, or 10mm in the diastolic (bottom) within three minutes of standing
  • Can happen up to 20 minutes after sitting up or standing
    • If you drive to the store (sitting), you can be standing in the checkout line and experience symptoms of nOH
    • Because of the delayed reaction, you may not associate the nOH symptoms with standing. So, you may not mention the experience to your neurologist, thus delaying diagnosis and treatment.

Here’s how it works:

When the human body stands, blood pools in the lower extremities due to gravity. When a healthy person stands up, neurotransmitters signal the veins and arteries to constrict, which pushes blood up to the heart, maintaining circulation throughout the body, especially to the brain. 

In people with Parkinson’s Disease (PD) there is a deficiency of the neurotransmitter norepinephrine. So, when a person with PD stands up, there is not enough norephinephrine to constrict the veins and arteries in the lower extremities. The blood remains pooled in the lower extremities, rather than circulating up to the heart and brain, causing symptoms of nOH.

Question: Mel asked how many people with PD experience nOH.

Dr. Brillman said the estimate is that one in five people with PD have nOH. Ther are a lot of non-motor symptoms and not every non-motor symptom will happen to everybody with PD. That’s why we do these educational webinars.

Symptoms of nOH are not just dizziness or lightheadedness. nOH can include other symptoms.

Question: Mel asked Dr. Brillman to start with those best known symptoms of nOH (dizziness and lightheadedness) and share all the other symptoms nOH can cause.

First, Dr. Brillman listed the common symptoms of nOH, including lightheadedness, dizziness, near fainting, or fainting. 

She reminded listeners that nOH is always due to a change in position. nOH does not happen when you just sitting. It does happen when changing from lying to sitting, sitting to standing, or lying to standing.

Other symptoms of nOH include:

• Weakness in your body
• Leg buckling (feeling like your legs are going to give way) when standing
• Cognitive changes
  • Care partners notice the person with PD has a blank, confused stare and is not answering questions
  • This is because blood is not circulating to the brain, so the brain cannot function well
• Visual blurring
  • Can’t see clearly
  • Again, because blood is not circulating to the retinal arteries in the brain that go to the eyes
• Coat Hanger Syndrome
  • Pain in the trapezium muscles in the upper back and/or neck when standing
• Headaches upon standing and walking
• Nausea
• Described as feeling like you’re going to fall into a black hole
• Chest pain
  • nOH can result in a full cardiac workup
  • This is because there is insufficient blood profusion in the heart while blood is pooled in the lower extremities
• Shortness of breath

Question: A listener asked if nOH can cause a blackout.

Yes. If you’re blacking out for ‘no apparent reason’ you should tell your neurologist and be evaluated for nOH.

Question: How is nOH diagnosed?

First, Dr. Brillman takes a detailed medical history from her patients who report symptoms that can indicate nOH. 

Then, she goes through their medications and makes sure nothing they are taking could be causing the problems reported. 

• Shorter-acting Parkinson’s medications, like dopamine agonists are culprits for causing nOH symptoms. A person taking dopamine agonists several times daily can try switching to an extended-release version to lessen nOH symptoms. Any extended-release medication is better than short-acting, pulsatile ones

She interviews patients about what they are experiencing. People with nOH tend to: 

• Have more symptoms in the morning that improve as the day progresses.
  
• Have more symptoms after eating
  • Because the arteries and veins in the stomach pull blood to the digestive system.
• Improve symptoms if they sit down.

Finally, she takes blood pressure and heart rate in her office several times:

• After the person has been lying down for five minutes. 
• After standing for one minute
• Again, after standing for three minutes.

She looks for:

• The systolic or diastolic numbers drop (20mm of mercury in the systolic or 10mm in the diastolic) and 
• For the heart rate to stay essentially the same.

If a person’s heart rate increases the OH is due to a non-neurogenic or iatrogenic reason (as mentioned previously).

Question: A couple listeners mentioned they have symptoms when they are walking up a hill or going up stairs. Is this equivalent to just standing up?

Yes! It is very common for someone to noticing symptoms for the first time when going up a hill or stairs. 

You have to be very careful because you can be hurt falling on a level surface. You are likely to be more badly injured falling down stairs or outdoors, especially on a hill.

Question: Is nOH related to lower extremity edema?

No, it is not.

Question: I’m dizzy all the time, but when I stand up my blood pressure does not go down.

Then, the dizziness is likely from something else.

Question: Can nOH lead to AFib?

No. It’s a different pathophysiology. That doesn’t mean one cannot have nOH and atrial fibrillation (AFib), but the pathophysiology is not such that nOH can cause AFib.

Question: Mel asked how does Dr. Brillman know if someone has Parkinson’s disease or MSA (multiple system atrophy).

Dr. Brillman said in early stages of a parkinsonism disorder nobody can know whether you have Parkinson’s disease or another parkinsonism disorder, like MSA.

Typically, people with MSA have profound drops in blood pressure and it happens early in the progression of symptoms. Not to say that nOH can’t happen early in a person with Parkinson’s, but someone with MSA will also have a lot of very significant other autonomic issues, including:

• Urinary problems
• Inability to hold their bladder
• Bowel incontinence

One would not see those symptoms early on in someone with Parkinson’s, particularly the urinary issues.

In MSA the blood pressure drops are so debilitating that people with MSA are often wheelchair-bound because it is so profound, they cannot function when standing.

Question: Do the reasons for OH and nOH overlap?

Dr. Brillman explained again that nOH is a type of OH, but with a neurological condition associated with it.

Question: For someone with Parkinson’s, is nOH something that typically gets worse over time? Is nOH a progressive symptom, like motor symptoms getting worse over the course of PD?

It nOH is not treated it will get worse over time. If you treat it, it pretty much stays stable. Sometimes nOH needs to be treated very aggressively.

Mel promised the discussion would get around to nOH treatments.

Question: A couple listeners mentioned freezing hands and feet. Mel asked if that is due to inefficient blood circulation. 

Dr. Brillman said cold hands and feet is very much a Parkinson’s thing. People with idiopathic PD have difficulty regulating their body temperature. They may sweat or have really cold hands and feet. So, that is not related to nOH.

Question: Can nOH be treated without prescribing more medications?

Yes. Dr. Brillman always starts with non-pharmacological treatments. If and when those non-pharmacological treatments don’t work, they stay the course of your life along with medications.

nOH takes a lot of education on the part of the person with PD and their care partners. Once you have nOH you must make lifestyle changes to minimize the symptoms.

70% of people with nOH have supine hypertension. That means, when they are lying down, their BP is high. 

• They have to sleep with the head of their bed elevated to 30 degrees because they are at risk of their BP being way too high at night.
  • Use a wedge pillow or bed risers 
• They also tend to urinate a lot at night because of this

Also, people get caught up in BP numbers but that is not the goal. Stabilizing BP at 120/80 (normal BP) for someone with nOH is not going to happen. BP is going to bounce up and down throughout the day. The goal is to improve symptoms, whatever your symptoms are.

Example: Some people know that if their systolic BP falls to 90, they are going to pass out. But I have had people in my office conversing with me when their systolic BP is 70 and they have no nOH symptoms.

Question: If you have supine hypertension are you more likely to have nOH?

A doctor will start to watch diligently for supine hypertension after a person is diagnosed with nOH because you shouldn’t sleep flat once supine hypertension is identified.

The other thing Dr. Brillman emphasized is hydration. Because nOH symptoms are worst in the morning, she really pushes people to drink fluids in the first half of the day. She listed water, electrolytes, Gatorade G2, V8 juice, and salty snacks, like canned soups loaded with sodium – only if it is okay with your doctor to increase your salt intake.

Then, remove any aggravating causes like hot weather or hot saunas. Saunas and hot, steamy showers will drop your BP. It you like hot showers, do that later in the evening and don’t make it too steamy.

Question: Can exercising vigorously and getting hot and sweaty drop your BP too?

Dr. Brillman said no, because it’s the external heat, not your own body heat, but if you exercise then go into a steam room, you may pass out, especially in the morning.

Dr. Brillman continued her list of lifestyle changes to control nOH symptoms by mentioning that large carbohydrate meals can precipitate drops in BP. Instead, eat smaller, low carbohydrate meals.

Some people use compression stockings, but abdominal binders are more effective. They squeeze the bigger blood vessels in the abdomen, which increases blood to the brain. One listener wears Spanx for her nOH and Dr. Brillman says that’s fine.

Question: Should people limit how long they wear compression socks or abdominal binders?

Do not wear them when you are lying down. You don’t want anything compressing while you’re lying down because you may have supine hypertension.

Another lifestyle change Dr. Brillman recommends is getting up slowly. This is a hard one for people because you want to get on with your day. Also, do leg lifts and leg crosses to exercise the big muscles in your legs and get the blood flowing before you stand up.  

Dr. Brillman switched to talking about medications to treat nOH.

There is only one FDA-approved medication:

• Droxidopa or Northera is a precursor for norepinephrine. It acts peripherally and centrally to replete epinephrine.

There are three others that are used, sort of off-label:

• Midodrine acts peripherally on the arterial and venous system
• Florinef is a corticoid, or volume expander
  • With increased fluid volume, you get higher BP
• Mestinon is used for myasthenia gravis, but it does have some properties to increase BP somewhat.
  • Less likely to increase risk of supine hypertension the other medications may produce

Question: If someone tries Northera, why might it not work for them so that they have to take multiple medications to control nOH?

Every practitioner is different, but the goal should always be to make your nOH symptoms better without supine hypertension.

If non-pharmaceutical lifestyle changes are insufficient and you try a medication, whatever medication your doctor starts, if your symptoms are not better, they may add on another medication.

It is a tricky balancing act trying to reduce nOH symptoms without too much supine hypertension. Dr. Brillman can’t say often enough how important it is for you to sleep with your head elevated 30 degrees, if you have supine hypertension!

Question: Please clarify if nOH is diagnosed by a general practitioner (GP), neurologist, cardiologist, or movement disorder specialist.

Dr. Brillman works closely with cardiologists who have patients come to them after a trip to the ER for fainting (syncope) and they would diagnose nOH.

Who diagnoses nOH depends on where you live. There are a lot of really astute GPs who know to look for nOH, but it just depends on which doctor you check in with when symptoms begin. It doesn’t matter which of those specialties makes the diagnosis.

Many healthcare providers don’t have a lot of time for each appointment. If your healthcare provider doesn’t have nOH at top of mind, but you have symptoms, you should absolutely bring it to their attention. In today’s medicine patients and care providers need to advocate for the care you need.

Question: Mel says sometimes it’s hard to get a doctor’s appointment. She reminds people that at-home BP cuffs may not be precise, but they are good enough to document whether your BP falls significantly when you stand up. 

Dr. Brillman agrees wholeheartedly.

Question: A listener said they have obstructive sleep apnea. Do any of your treatment recommendations change with that co-morbidity?

No.

Question: A listener recommends taking salt tablets if you’re not a salty snack eater, or don’t want the additional calories from chips, etc.

Dr. Brillman agrees with that suggestion, as well – if your doctor agrees that increasing your salt intake is okay for your health profile.

Question: Can altitude affect nOH?

No.

Question: A listener says they are not able to exercise strenuously because they become overheated, dizzy, and short of breath. 

Those symptoms are likely unrelated to nOH.

Question: If you are having an nOH episode, should you skip your BP medication for that day?

Dr. Brillman recommends talking with your doctor about that. You want to make sure that your BP is actually dropping and not take that decision upon yourself. There are lots of reasons people take BP medications, it is not always just to increase BP, so you should not skip doses or stop taking it without discussing it with your doctor.

That said, a lot of people with PD have a history of high BP and over time they no longer need their anti-hypertensive medications, but they keep taking it for a while before realizing they no longer need it. If you start to have nOH symptoms, having someone look at all your medications and removing or reducing the dose of anti-hypertensives can be a quick fix.

Having someone review your medications whenever there is a change in the symptoms you experience is always a good idea. As we grow older your liver and kidneys do also. You may not need the same dose, or a new medication may be interfering with the effectiveness of something you’ve been taking for a long time. 

Question: Does anything we normally ingest, like coffee or alcohol have any bearing on nOH?

Dr. Brillman is happy Mel brought this up. Caffeine is a diuretic, so it will not help your BP. Diruetics work to reduce fluid volume in your body.

Alcohol will drop your BP. So, with people who have nOH, we really recommend decreasing alcohol consumption. If you’re going to have a cocktail, eat a lot of salty snacks and drink a lot of water with it. That way, you’re compensating for the effect of the alcohol on your BP. No mimosas in the morning!

Dr. Brillman mentioned high carbohydrate meals. Juices will drop your blood sugar. So, if you have juices in the morning and you feel lightheaded after breakfast, cut out the juice.

Question: Does everyone with OH have to sleep on a wedge or raise the head of their bed 30 degrees? 

Mel thought the answer would be that raising the head of your bed is just if you have supine hypertension, but Dr. Brillman said that she recommends all her patients with nOH raise the head of their bed. She says it is because the likelihood is that they have supine hypertension or will have it, even though in the literature those with nOH who have supine hypertension is about 70% of patients. Dr. Brillman would rather be safe than sorry.

Question: Are there other conditions that mimic nOH.

Yes, dehydration, cardiac issues like congestive heart failure, high BP medications, etc.

Question: If you have nOH, should you also try to have autonomic testing?

If you have a diagnosis of nOH and PD, you don’t need to have further autonomic testing. 

For people who have trouble getting a diagnosis of nOH with simple BP measures lying down and standing, one can get autonomic testing. There are dysautonomia centers or autonomic centers around the country that do tilt table and different autonomic testing that can clinch the diagnosis. 

Question: Mel asked Dr. Brillman to tell listeners more about what autonomic testing might look like.

For nOH they will do a tilt table test. The patient lays on a table that tilts to lower the patient’s head. They will leave the patient in that position for a few minutes, then raise them upright. The patient is connected to a blood pressure cuff to compare BP before and after being tilted, as well as their heart rate. 

Some people will have a drop in BP sufficient to make them faint on the tilt table, but they are strapped to the table, so they are safe.

Question: A listener shared that they struggled with OH symptoms for at least five years prior to their PD diagnosis. So, Mel asked if OH can be a prodromal (pre-motor) symptom.

Dr. Brillman is kind of amazed at this story but said yes. OH can be a prodromal PD symptom. 

She finds the listener’s story sad because she has seen how dramatically a person’s quality of life is impacted when they have nOH. They can be afraid to leave their home and not be able to control their surroundings when nOH symptoms start.

Question: Can nOH lead to convulsions or seizures? 

No, but people can have convulsive syncope, which is making small jerking motions during a fainting spell.

Question: Can you use a wedge if you sleep on your side? One listener’s doctor doesn’t think a wedge is a good idea because it bends the middle section of the torso. Another listener asks if the wedge should be a full body length.

Dr. Brillman says the point is to get the mid-back (heart area) elevated. She hears from patients that is difficult to sleep on your side using a short wedge. Sleeping with your head raised takes some getting used to, but it is worth it.

Alternatives to short wedges are full bed-length wedges, bed risers for the headboard end of the bed, adjustable beds (very expensive new), or adjustable hospital beds (cost may be covered by Medicare).

Question: A listener asked if you can experience nOH symptoms by lying down.

No, if you have these symptoms when lying down, there is a different cause.

Question: Can you drive safely with nOH?

If you don’t have symptoms while seated, you can. Remember, nOH symptoms are brought on by changing position from lying to standing

If you have symptoms after a long time of being seated, Dr. Brillman believes it is not safe for you to drive. But if you don’t have symptoms when seated, or your symptoms go away, then it is safe to drive.

Question: Mel asked about the consistency of symptoms. If someone truly has nOH, do they experience symptoms every single time they change positions, or is it more intermittent than that?

Symptoms occur when BP falls below your level of their autoregulation. That point is different for everybody. Remember Dr. Brillman’s patient who can carry on a conversation when his BP is 70? He will be symptomatic when his BP falls below 65, but his BP doesn’t fall that low every time he stands up.

Question: If somebody experiences nOH every so often, they need to make all the lifestyle changes. At what point do they need to add medication to keep nOH symptoms under control?

If a person is still having symptoms at all after making lifestyle changes, they should add a medication.

Question: A listener found a strong Starbucks coffee and a sweet pastry in the morning exacerbate their nOH.

Yes, the carbohydrate load is dropping your blood pressure.

Question: A listener says doing a backbend when standing helps them get rid of the dizziness right away. Is that okay?

It probably works because you are getting blood back into your head. Doing a backbend is kind of risky because the one time it doesn’t work, you’re going to land on your head.

Dr. Brillman says when you are acutely dizzy, find a place to sit immediately. If you are about to pass out, the fastest way to bring your BP up fast is to drink a big glass of cold water. 

Alternatively, if you have nOH and your BP is high, stand up and walk around or eat a large carb-loaded snack to bring it down.

People with PD already have gait and balance issues, so they are at increased risk for falling. Avoid BP drops at all costs to reduce your risk of falling. It only takes one fall causing a fracture to significantly increase your risk of mortality from hospitalization.

Question: A listener says when they get breathless and lightheaded walking, they clench their butt muscles, and it helps.

Dr. Brillman says that’s exactly right! In clenching the glutes, you’re bringing the blood up from your lower extremities. She recommends clenching your butt muscles before standing every time when you have nOH.

Question: A listener says they have had low BP their entire life. Do they really need to measure their BP while supine?

Yes. If you have PD measuring your BP while lying down and standing should be part of your normal practice. 

Question: A listener teaches pedaling for Parkinson’s at the YMCA. Could nOH occur from the seated bike position to standing position?

Yes, even going from seated to standing on the pedals to go faster can bring on nOH symptoms. nOH can happen whenever someone changes position from 

• lying to sitting
• lying to standing
• sitting to standing

It may be worth it to talk with the group about nOH symptoms and have everybody test their BP at home. You can ask those that have a systolic drop of 20mm of mercury or 10mm diastolic to 

• stay seated on the bikes during class
• drink a whole bottle of Gatorade G2 before class
• keep a bottle of ice water on the bike

Question: A listener says they experienced the drop in BP, but it doesn’t clear up and they’re unable to function. It intensifies if they move around.

If the symptoms don’t improve when you sit down, they are likely caused by something other than nOH. You should discuss your symptoms with your primary care physician. They may refer you for a different neurology or cardiology workup to determine the cause.

Question: A listener shared that after a low BP episode they feel ill for most of the rest of the day. Is this typical?

Dr. Brillman says that is common for people who feel nauseated with a nOH episode.

Fatigue and headache are other aftereffects of an nOH episode that can take a while to dissipate over the course of the day.

If that’s happening to you, it is worth getting a proper diagnosis and treatment, to improve your quality of life and decrease your risk of falling.

Question: A listener asked, if they have PD now and do not have nOH, could they develop it later?

Yes, it can happen at any point during your Parkinson’s journey.

Question: Mel asked if there are any questions Dr. Brillman gets from patients that haven’t been asked during this webinar.

Rather than a question, Dr. Brillman had a couple takeaway messages: 

She recommends writing down nOH symptoms as they are happening and bring that description of the episode(s) to your doctor.

Even though you think of the most common symptoms of nOH (dizziness and lightheadedness), your experience of nOH may not be like that. 

Dr. Brillman had a patient who told her he could not finish his mile-long walk. He was never dizzy or lightheaded. She tinkered with his meds to no avail. Eventually, they realized his legs were giving out at the end of his walk due to low BP. It was very gratifying for both of them to have solved the puzzle and given him back confidence and increased activity.

Always bring changes in your symptoms to your doctor(s) and be your own advocate!

Question: Are there long-term effects of not treating nOH?

Loss of quality of life and falling are the biggest risks of nOH.

Mel recommends emailing your doctor the written description of your nOH symptoms, so they know what you are coping with. That way, they will know it is something you want to discuss at your next appointment – if it is mild, happening infrequently and not leading to fall.

Your doctor may make helpful recommendations before your next appointment or move your appointment sooner if it sounds like you need more help than email or a phone call can provide.

Because of the risk of falls and injury, you should never wait when dealing with nOH. You need to see someone and get help to control nOH symptoms right away.

Question: With something like Northera, does it start working immediately or must it be in your system for quite a while before you notice it is working?

Northera must be titrated.  The maximum daily dose is 600mg three times daily. We start at a low dose and increase every 24-48 hours until a person’s symptoms are improved. It takes about a week to notice improvement and one to two weeks to get to the most effective dose.

Midodrine is faster acting but it spikes blood pressure up and has a short half-life, so there is more likelinood of supine hypertension.

Florinef works within a couple of days. 

Mestinon is the last add-on. It is not a first go-to medication for nOH.