Category Archives: MSA

In early June, the Parkinson’s Foundation (parkinson.org) offered a webinar on managing blood pressure in Parkinson’s disease (PD), featuring neurologist Albert Hung. He discussed how PD impacts blood pressure (BP) regulation, how to diagnose BP issues, and approaches to treating BP in those with PD. Many in the atypical parkinsonism community — especially those with multiple system atrophy (MSA) and Lewy body dementia (LBD) — experience these BP regulation issues, so we are sharing information about the webinar here.

In particular, one issue in PD, MSA, and LBD is orthostatic hypotension (OH), which is a drop in blood pressure when someone stands upright. To be defined as OH, the drop in BP associated with standing must be:

• Systolic BP drops at least 20 mmHg or more
• Diastolic BP drops at least 10 mmHg or more

Systolic is the upper number, and diastolic is the lower number. So a person whose BP is generally 130/70 would be experiencing OH if the person has a drop in BP to 110/60 with standing.

As the speaker says:

OH is largely a consequence of gravity: when you are upright, your blood tends to go to your legs, and your circulatory system has to work harder to keep it moving against gravity. This is why some people who work on their feet all day may have swelling in their feet or ankles by the end of the day.

Some people experience symptoms (are symptomatic) when their BP drops, while others are asymptomatic and can’t even tell. Common symptoms of OH include lightheadedness or dizziness; weakness; fainting; difficulty thinking (especially in older individuals). When OH causes symptoms, it is especially worrisome.

This webinar was recorded and can be viewed here: 

www.youtube.com/watch?v=O73BA5tc7ek&feature=emb_logo

Lauren Stroshane with Stanford Parkinson’s Community Outreach viewed the webinar and shared her notes.

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Managing blood pressure – Webinar notes
Presented by the Parkinson’s Foundation, Northeast Chapter
June 4, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

When it comes to managing Parkinson’s disease (PD), there are a lot of symptoms a movement disorders specialist typically asks about: tremor, walking, balance, and other aspects of physical functioning. One thing that sometimes falls through the cracks is blood pressure (BP), but this can have a significant impact on one’s quality of life and overall health. Compounding the challenge, once someone with PD starts to experience drops or fluctuations in BP, it’s not always clear who should address these issues: the neurologist, the primary care doctor, or the cardiologist?

The speaker, Dr. Albert Hung, is a neurologist at Harvard. He pointed out that it is often when going about one’s day-to-day activities that BP problems are most noticeable, not necessarily when one goes into the clinic for an appointment. Thus, it is a topic that is particularly relevant today when many are sheltering at home due to the Covid-19 pandemic.

He started with a discussion of the factors that regulate BP:

1. Heart: Cardiac output, the ability of your heart to pump blood throughout your body.
2. Blood vessels: Our blood vessels are not just pipes; they also contain muscle tissue and nerves (baroreflexes) that allow them to participate in BP regulation by dilating or contracting in response to communication from the brain.
3. Blood volume: The amount of fluid we have circulating in our body is critical to maintaining BP. If you don’t have enough blood, such as from blood loss or dehydration, no matter how strong your heart is or how much your blood vessels contract to try to compensate, your BP will eventually drop.

When your BP is checked, whether at home or at the doctor’s office, all these factors work together to determine whether the BP reading is a little high, normal, or a little low.

The Autonomic Nervous System

Sometimes called the “involuntary” nervous system, this is the part of the nervous system that manages certain bodily functions automatically, without your being aware. There are 2 main “flavors” of the autonomic nervous system:

1. The sympathetic nervous system – Involved in the “fight or flight” response
   1. Increases heart rate and strength of heart contractions
   2. Widens airways
   3. Induces sweating
   4. Causes your pupils to dilate
      
2. The parasympathetic nervous system – the “rest and digest” functions
   1. Controls bowels and bladder
   2. Slows heart rate and lowers BP
   3. Regulates erectile function

Orthostatic hypotension

Ordinarily, our body responds to whatever we are doing – running, walking, lying down, or sitting – and is able to maintain a nice, steady blood pressure within a normal range. If your BP starts to creep up and is high most of the time, then your doctor might diagnose you with hypertension – high BP – and possibly put you on medication to lower it.

However, in Parkinson’s disease, the most common BP issue is actually low BP, or hypotension. This particularly occurs when the individual is standing upright, which is called orthostatic hypotension. Orthostatic hypotension (OH) is defined as a fall in BP associated with standing:

• Systolic BP drops at least 20 mmHg or more
• Diastolic BP drops at least 10 mmHg or more

So a person whose BP is generally 130/70 might experience a drop when they stand up down to 110/60, or even lower. (130 is the systolic BP and 70 is the diastolic BP.)

OH is largely a consequence of gravity: when you are upright, your blood tends to go to your legs, and your circulatory system has to work harder to keep it moving against gravity. This is why some people who work on their feet all day may have swelling in their feet or ankles by the end of the day.

Some people experience symptoms (are symptomatic) when their BP drops, while others are asymptomatic and can’t even tell. Common symptoms of OH include:

• Lightheadedness or dizziness
• Weakness
• Fainting
• Difficulty thinking (especially in older individuals)

When OH causes symptoms, it is especially worrisome.

OH can be neurogenic – caused by changes in the brain, such as in PD – or non-neurogenic, caused by other issues. Causes of each include:

• Neurogenic OH:
  • Parkinson’s disease
  • Other parkinsonism, such as multiple system atrophy, dementia with Lewy bodies, or pure autonomic failure
  • Small fiber/autonomic neuropathies
• Non-neurogenic OH:
  • Medications
  • Dehydration
  • Fever
  • Cardiac disease
  • Chronic illness with deconditioning

OH is quite common in PD, possibly affecting up to 30% of individuals with PD in some studies. OH becomes more likely as the disease advances, but in some people, it can occur early on as well. PD often causes OH, however, the dopaminergic medications used to treat PD can also lower BP, contributing to or triggering episodes of OH. This can lead to challenging dilemmas in treatment decisions.

In many ways, the motor symptoms that allow for diagnosis of PD are just the tip of the iceberg; the changes in the brain have already spread to many areas that impact other aspects beyond motor function, such as autonomic function, which may not be as apparent or visible. Additionally, many of the symptoms down below the “tip” of the iceberg – such as autonomic dysfunction, mood changes, or sleep problems – may not respond to medication as readily as motor symptoms like tremor or walking.

Am I having neurogenic OH?

Below are some screening questions you can ask yourself or your loved one while at home, to determine whether you may be having neurogenic OH.

1. Have you fainted/blacked out recently?
2. Do you feel dizzy or lightheaded upon standing?
3. Do you have vision disturbances when standing?
4. Do you have difficulty breathing while standing?
5. Do you have leg buckling or leg weakness when standing?
6. Do you ever experience neck pain or aching (“coat hanger pain”) when standing?
7. Do the above symptoms improve or disappear when you sit or lay down?
8. Are the above symptoms worse in the morning or after meals?
9. Have you experienced a fall recently?
10. Are there any other symptoms you commonly experience when you stand up or within 3-5 minutes of standing, and that get better when you sit or lay down?

What can aggravate neurogenic OH?

• Alcohol
• Heat exposure, whether due to weather or a hot tub / hot shower
• Carbohydrate-heavy meals
• Prolonged sitting or lying down
• Dehydration
• Physical exertion
• Straining (during urination or bowel movement)

How is neurogenic OH diagnosed?

You may have a suspicion that you are experiencing nOH at home, but your doctor will still need to follow the diagnostic process to determine if that is actually what is happening to you. I In most clinics, your BP and heart rate (HR) vital signs will be checked at the beginning of the appointment. However, most clinics will only check them once, while you are sitting down. Someone who has OH may have normal vital signs when seated.

If you suspect that you may be experiencing OH, you may need to ask the medical assistant or the doctor to check what is called orthostatic vitals – to check your BP again after you have been standing for a few minutes and see if it drops significantly from the first measurement when you were seated.

You can also check these measurements on your own, at home, which can be even more informative. BP fluctuates under normal circumstances throughout the day. Electronic BP cuffs can be purchased from most drugs stores or ordered from the manufacturer, though they are not cheap, and often cost at least $50.

What your doctor is looking for is a drop in the BP when you have been standing for a few minutes. Usually, the heart rate remains the same. If the heart rate goes up as the heart tries to compensate for the drop in BP, this suggests that you may be dehydrated – you should try to drink more fluids!

Once it is clear that OH is present, you may need to reduce or stop medications that cause OH, if appropriate. Many people are on anti-hypertensive medications to lower the BP if they have had issues with high BP in the past; this medication may need to be lowered or stopped if you are experiencing OH now.

Your doctor may also decide to have you undergo further testing, such as an echocardiogram, an electrocardiogram (EKG), and blood tests, to make sure your heart is functioning normally. If all of that testing doesn’t show a clear cause of your OH, your doctor may also consider specialty testing, such as autonomic function testing that uses a tilt table to assess your BP stability, or 24-hour BP monitoring.

How to manage neurogenic OH?

1. Modify or remove medications that can cause neurogenic OH
2. Non-pharmacologic measures
3. Pharmacologic measures
4. Combination pharmacologic measures

Modify or remove medications that cause OH: 

• Anti-hypertensive agents like beta blockers, ACE inhibitors, calcium channel blockers, etc.
• Diuretics to get rid of extra fluid, such as Lasix.
• Dopaminergic agents, such as levodopa or dopamine agonists (Mirapex, Neupro, or Requip).
• Alpha-1 adrenergic blockers, used to treat benign prostatic hyperplasia.
• Medications for erectile dysfunction, such as Viagra.
• Antidepressants, such as amitriptyline, nortriptyline, and imipramine.

You may have noticed (C), dopaminergic agents! Frustratingly, some of the medications used to treat Parkinson’s disease (PD) can also contribute to drops in BP. Often, it is necessary to reduce how much of these medications you are taking, if you are experiencing symptoms of neurogenic OH. Sometimes, it can be a balancing act.

There are some measures to combat neurogenic OH that do not involve medication changes. These are sometimes called “conservative measures” or non-pharmacologic measures.

• Hydration, hydration, hydration!
  • Drink a minimum of 64 oz (2 liters) of water daily.  
  • If you are having an OH episode, drink 2 cups of water within 5 minutes as this may help to boost your BP for an hour or two.
• Increase salt intake! Many people avoid salt as they get older, but your body actually needs salt to hold onto enough water to maintain a healthy BP.
  • Add 1-2 teaspoons of salt to your diet per day.
  • Or take salt tablets (0.5 to 1 gram NaCl) with meals.
  • Be careful if you are at risk for fluid retention or heart failure! In that case, check with your cardiologist first.
• Physical maneuvers to counter OH, particularly if you are in a situation, such as waiting in line at the grocery store, where you can’t sit down right away. Sitting down immediately is the best option!
  • Stand up on your toes or cross your legs while standing; this helps the blood flow return from your legs to the rest of your body. 
  • Lean forward and rest your hands on your knees.
  • Put one leg up, such as on a chair.
  • Squat on both legs.
• Compression garments: the idea is to help squeeze the blood to return to your heart, so it does not pool in your legs. These garments can be challenging to get on and may be uncomfortable, but some find them to be helpful in avoiding more medication.
  • Compression stockings – waist-high are most effective, followed by thigh-high. Knee-high are generally not effective.
  • Abdominal binder – similar to a girdle.

Pharmacologic (drug) measures

1. Fludrocortisone (Florinef)
   1. Works on your kidneys to promote salt and water retention.
   2. Side effects: supine hypertension (spikes in BP when laying down), low potassium, and swelling.
2. Midodrine
   1. Causes blood vessel constriction. Can sometimes be dosed in conjunction with levodopa to mitigate drops in BP.
   2. Typically 1-3 doses a day. Kicks in after about 30-60 minutes and lasts 2-4 hours.
   3. Avoid taking too close to bedtime or before laying down.
3. Pyridostigmine (Mestinon)
   1. Enhances neurotransmission at pressure-sensing synapses
   2. May be best for less severe OH and is less likely to cause supine hypertension (spikes in BP when you lay down)
   3. Side effects: abdominal cramps, diarrhea, drooling, excessive sweating
4. Droxidopa (Northera)
   1. Causes blood vessels to constrict
   2. Avoid taking too close to bedtime or before lying down

Combination pharmacologic measures

Each of the drugs listed above works in a different manner. Sometimes your doctor may have you take more than one of them, which may address the problem from different angles, yielding better results for some people.

Post-prandial hypotension

An important concept to be aware of is post-prandial hypotension – a drop in BP after eating a large meal. When you eat a lot at once, your body responds by diverting blood from the rest of your body to your digestive tract, to help process the food. But this can decrease BP to the rest of your body during that time, causing your overall BP to drop. This can occur particularly with alcohol or with meals rich in carbohydrates. Some people may feel faint or weak even just sitting at the dinner table. For an individual who is also prone to orthostatic hypotension, this can lead to very dangerous drops in BP when getting up from the table after a large meal, potentially triggering fainting and falls.

To manage this problem, try the following:

• Eat smaller, more frequent meals rather than one large meal.
• Avoid alcohol with meals.
• Drink several cups of water quickly, either before or during the meal.
• Avoid taking your PD medications too close to meals, as this can contribute to low BP.

Supine hypertension

The speaker talked mostly about the dangers of low BP in those with PD, but he also wanted to address supine hypertension – a significant rise in BP that can occur when laying down. The same dysfunction in the autonomic system that can cause neurogenic OH can also cause supine hypertension. Complicating matters, the medications used to treat neurogenic OH can worsen supine hypertension. Symptoms include headache and flushing.

Strategies to manage supine hypertension include:

• After taking medication for your OH, avoid lying down for at least 3-4 hours.
• Sleep with the head of the bed elevated. This also reduces nighttime urination.  
• A short-acting anti-hypertensive medication may be necessary during the day or overnight to lower the BP and prevent hypertension while lying down.

Main takeaways:

1. Fluctuations in BP are common in Parkinson’s disease.
2. These are due to the underling disease but can also be exacerbated by PD medications.
3. It is important to recognize symptoms associated with orthostatic hypotension.
4. A combination of pharmacologic and non-pharmacologic strategies may be helpful.
5. Supine hypertension can also occur in PD, affecting lifestyle and complicating management.

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Question & Answer Session

Q: For someone who has been experiencing PD-related OH and supine hypertension for years, are they at higher risk for stroke or heart attack?

A: When we think about BP issues in someone with PD, it’s important to think about them not just in the context of their neurologic disease. If they have a history of cardiac disease, that’s important to take into account when evaluating their risks from OH and supine hypertension.  It may affect how your doctor tries to manage their BP issues. It is important to focus on the symptoms that are most bothersome and present the largest impact to quality of life.

Q: My husband has PD and struggles with low BP in the mornings, often fainting. What should we do?

A: Have you tried the conservative measures mentioned above? If you have, and he is still fainting regularly, then it’s time to speak with his doctor and be more aggressive in treating this, likely by adding some medication.

Q: If Sinemet (levodopa) seems to be causing low BP, what else can be done?

A: We all love Sinemet in the right context for its ability to improve motor function in PD! But sometimes it’s a balancing act. The first thing he would do is see if the Sinemet can be reduced without substantially impacting your ability to move. However, for those who are working with a movement disorders specialist, there is probably a reason that you ended up at your current level of Sinemet: the lower doses likely weren’t controlling your motor symptoms adequately.

If that’s the case, then using the other strategies – conservative measures and maybe adding a medication or two to support BP – is likely the best approach.

Q: My diastolic BP (the bottom number) tends to be low, around 60, whether I am standing or sitting. How do I manage this?

A: Everybody’s diastolic BP is different; this may be quite normal for you. When we are trying to treat the symptoms of neurogenic OH, we focus on treating the symptoms – how you feel – not the BP numbers. Not everyone experiences symptoms even if their BP numbers fluctuate; for those who are asymptomatic, we don’t need to treat it.

His advice to patients is, if you’re having these symptoms, have a BP cuff at home to check occasionally when you are feeling off. But don’t be overly compulsive about checking your BP over and over again throughout the day; this will only lead to anxiety, which can make your BP higher! Follow whatever guidelines your doctor has given you for when to measure your BP, and otherwise, focus on going about your day.