“
I cry (or sometimes
laugh) out of nowhere,
all the time. I can’t seem
to control it, and it’s not
the way I feel.
”
Your Guide to Understanding PBA
If this sounds like you, and you have a neurologic condition or brain injury,
you might have PseudoBulbar Affect (PBA). Learning about PBA is your first
step in discovering how to manage the condition. Take a look through this
guide to find out more about PBA and what to ask your doctor.
Learn more about PBA
You’ve taken a great first step
in finding out more about PBA
This kit is full of information to help you learn about the
symptoms of PBA, assess your own symptoms more closely,
and have a productive and honest discussion with your doctor.
Be sure to fill out your information, and then print or email
it to yourself so you can show it to your doctor.
Contents of the kit:
Your Guide to Understanding PseudoBulbar Affect (PBA)
• What does PBA feel like?
• What exactly is PBA?
• Sometimes PBA can be mistaken for other conditions
• What’s the difference between PBA and Depression?
• Living with the symptoms of PBA
• Reminders for my next doctor’s appointment
Your short PBA quiz
• Instructions
• Take the quiz—print and take to your doctor
Preparing for Your Doctor’s Visit
• Tips for your visit
• Track your episodes
• Describe your episodes
• 5 questions for you and your doctor
What does PBA feel like?
These are real quotes from people who have PBA, and they’re not alone. While there are
almost 2 million people in the US with neurologic conditions or traumatic brain injury
who have PBA, over 7 million people in the US have symptoms that suggest PBA.*
PBA episodes can be confusing, frustrating,
and draw unwanted attention.
“
I’ve had crying episodes that were really upsetting.
I run a restaurant, and I’ve been in the middle of the
dining room with tears running down my face.
”
PBA episodes can make you cry and/or laugh
when it really doesn’t match how you feel—you
look one way on the outside, but you feel
completely different on the inside.
“
Our son was invited to be a speaker at a prestigious
academic conference. I just burst out sobbing even though
inside I felt nothing but happiness and pride.
”
PBA episodes can cause embarrassing situations.
“
You’ll be somewhere and stand out.
You’re different and people look at you differently.
”
*When considering patients with any of 6 common neurologic conditions associated with PBA, it is estimated
that 37%, or an estimated 7.1 million Americans, have symptoms suggestive of PBA as defined by a CNS-LS
(Center for Neurologic Study-Lability Scale) score ≥13, and 9.4% of patients, or an estimated 1.8 million
Americans, with CNS-LS scores ≥21. The presence of PBA symptoms was defined as a CNS-LS score ≥13
and a more restrictive definition was also evaluated using CNS-LS ≥21. The CNS-LS was validated as a
PBA screening tool in ALS and MS populations. A CNS-LS score ≥13 merits further diagnostic assessment.
What exactly is PBA?
PBA is a condition affecting people who have a neurologic
condition or brain injury where they have episodes of crying
and/or laughing that are:
Sudden
Frequent
Uncontrollable
…and that don’t match their feelings.
A person having a PBA crying spell may cry
when they don’t feel sad or when they only
feel a little bit sad.
Someone having a PBA laughing spell
may laugh when they don’t feel
amused or when they only
feel a little bit amused.
Could your symptoms be a sign of PBA? The short PBA Quiz
is a good place to start a conversation with your doctor.
Sometimes PBA can be mistaken
for other conditions
Because PBA always happens in addition to certain neurologic
conditions or brain injury, its symptoms are often misunderstood
and mistaken for conditions such as:
Depression
Bipolar disorder—A disorder associated with mood swings
Euphoria—Excessive laughter sometimes associated
with conditions like multiple sclerosis (MS)
PTSD (post-traumatic stress disorder)—A disorder
that follows a traumatic event, sometimes associated
with conditions like traumatic brain injury (TBI)
Pain—A feeling sometimes communicated through crying,
especially in people with Alzheimer’s disease
It’s possible to have these symptoms and conditions while having
PBA, but each condition is different and needs to be diagnosed and
managed by a doctor. That’s why it’s important to talk to your doctor
and find out what might be causing your different symptoms.
“
Because I was crying AND laughing,
I suspected there must be something more
than just depression going on.
”
What’s the difference between PBA and Depression?*
: You also have a neurologic condition or brain injury
Depression:You may or may not have a neurologic condition
or brain injury
UNDERLYING CONDITION
HA
HA
: You have sudden, frequent crying and/or laughing
Depression:You may or may not have crying†
SIGNS
†Tearfulness/crying is not a diagnostic hallmark for depression diagnosis.
: Your crying and/or laughing spells are uncontrollable
Depression:You may have control over crying
CONTROL
:Your crying and/or laughing is exaggerated or doesn’t
match how you feel
Depression:Your
MOOD
crying matches how you feel
: Your crying and/or laughing lasts seconds to minutes
Depression:Crying is part of your depression that can last weeks
to months
TIME
*Formal diagnosis of PBA or depression can only be made by a qualified healthcare professional (HCP). These are not all of the diagnostic features of depression
or PBA. PBA occurs in the context of a neurologic condition/injury affecting the brain and is not explained by other causes such as medication use.
Learn more about the symptoms
of PBA at PBAinfo.org/about-pba
Living with the symptoms of PBA
Sudden, frequent, uncontrollable crying or laughing can
make things challenging at times. To make it a little easier
to cope with uncontrollable crying or laughing episodes,
here are a few ideas from doctors and patients:
TIP:
Educate others.
Your symptoms may take people around you by surprise. The
more you help them understand PBA, the more they’ll know
how to react.
TIP:
Change body position.
When you think you are about to laugh or cry, try switching
things up. If you’re standing, try sitting down. If you’re sitting,
try getting up and walking.
TIP:
Take deep breaths.
Breathe in and out slowly until the episode passes.
TIP:
Relax.
Try to massage or release tension from your forehead, neck,
shoulders, jaw, and other muscle groups that may tense up
while you’re having an episode.
These tips are general coping techniques and are not
substitutes for medical advice from your doctor. Please talk
to your doctor about more ways to cope with your symptoms.
Caring for someone with PBA symptoms?
Get tips on helping them at PBAinfo.org
Reminders for my next doctor’s appointment:
Take the PBA quiz and bring it to my appointment
Record my crying and laughing episodes and bring
the results with me
Ask my doctor about managing PBA symptoms
Write down any other questions for my doctor:
Print and bring your questions—and your results
from the PBA quiz—to your next appointment.
For more tips and tools for living
with PBA, visit PBAinfo.org
Your PBA Quiz
Take this 7-question quiz to help start
the conversation with your doctor
If you have a neurologic condition or brain injury and are
experiencing crying and/or laughing episodes that are
sudden, frequent, and uncontrollable, and that don’t match
how you feel, it may be a sign of PseudoBulbar Affect (PBA).
The questions on the next page can help you
and your doctor determine what your symptoms
mean and what the next steps might be.
Instructions:
1 Verify that you have one of the following conditions:
TBI (traumatic brain injury)
Alzheimer’s disease/dementia
Stroke
MS (multiple sclerosis)
ALS (Lou Gehrig’s disease)
Parkinson’s disease
2 Using the scale on the next page, write the number
that best describes you during the past week.
Add your total score.
3 Print and show your results to your doctor, using the
discussion guide.
The Center for Neurologic Study-Lability Scale (CNS-LS) was developed by healthcare professionals
to identify and measure symptoms suggestive of PBA. It does not diagnose PBA and is not intended
to substitute for professional medical assessment and/or advice. Please consult with your doctor.
The CNS-LS has been validated in ALS and MS patients.
You can also take this quiz for
an easy way to find out your score.
Take the PBA Quiz
For each question, select a number that describes you
during the last week. Use the guide below to make your choice.
When you are finished, add your numbers for your total score.
1 Applies never
2 Applies rarely
3 Applies occasionally
4 Applies frequently
5 Applies most of the time
Q1: There are times when I feel fine one minute, and
then I’ll become tearful the next over something
small or for no reason at all.
Q2: Others have told me that I seem to become amused very
easily or that I seem to become amused about things that
really aren’t funny.
Q3: I find myself crying very easily.
Q4: I find that even when I try to control my laughter,
I am often unable to do so.
Q5: There are times when I won’t be thinking of anything
happy or funny at all, but will suddenly be overcome by
funny or happy thoughts.
Q6: I find that even when I try to control my crying,
I am often unable to do so.
Q7: I find that I am easily overcome by laughter.
In studies, scores of 13 or higher were more
likely to suggest PBA; however, this score
does not diagnose PBA, and lower or higher
scores can occur in people with and without
PBA. Your doctor will still need to determine
if you have PBA.
TOTAL SCORE:
Preparing for Your Doctor’s Visit
It’s important to make sure you’re prepared for your visit, so you can
have an informed and open conversation with your doctor. The tips
and questions in this guide can help you discuss your symptoms and
whether they might be a sign of PseudoBulbar Affect (PBA).
Tips for your visit
TIP:
Give details. Let your doctor know things like:
How often you have a crying and/or laughing spell
hether your spells match how you feel, which can help your
W
doctor determine if they’re caused by depression, PBA, or
something else
TIP:
Come prepared.
Write down your questions beforehand
Bring a friend or family member to your appointment
se this guide to describe your episodes. Print and bring it along
U
to your appointment
TIP:
Don’t be afraid to ask. The only bad questions are the ones you
don’t ask.
TIP:
Find out what’s next. PBA is a manageable condition. You and your
doctor should discuss your options.
Keeping a record of your episodes
It can be difficult remembering all of your episodes and details
about them. Try tracking your episodes for a week and reviewing
the results with your doctor during your next visit.
How many episodes did you have in the last week?
Were they crying or laughing?
(check the crying or laughing face for each episode)
Keeping a record of your episodes
Describe your episodes
(check all that apply)
Sudden
Frequent
Uncontrollable
Exaggerated (crying or laughing more than you wanted to)
Didn’t match how you felt
Which words describe the impact of your episodes?
(check all that seem appropriate)
Embarrassing
Confusing
Frustrating
Exposing
Discouraging
Like I looked completely different from how I felt
Since your symptoms started, how much have the
following changed for you:
Not at all
Somewhat
A lot
Eating habits
Sleeping habits
Desire to participate
in hobbies/activities
Overall activity level
Time spent socializing
How bothered are you by these episodes?
Not at all
Somewhat
A lot
5 questions for you and your doctor
Ask yourself
1 Do I have a neurologic condition or brain injury,
and can I describe my crying or laughing episodes
in any of the following ways?
Sudden
Frequent
Uncontrollable
xaggerated (crying or laughing more than
E
I wanted to)
I nappropriate or do not match what I am
feeling inside
2 Are my unpredictable crying or laughing spells
confusing or frustrating?
3 Have I let my doctor know I am experiencing these
episodes and that they are bothering me?
Ask your doctor
4 Do you think I have the neurologic condition
called PBA?
5 What can I do to manage my episodes?
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or registered trademark of Avanir Pharmaceuticals, Inc. in the United States
and other countries. PBA-0244-WEB-0317