3. I CAN’T SAY THAT my behavior was pleasant; I was in
pain. I would get angry at him, yell, accuse, tease him, rant
and rave; I was sure my brother was bothering me purpose-
fully! My whole body would tense, my heart would beat fast-
er. I would be in a state of fight or flight response.
I’m a scientist by nature; particularly physics and math,
so I did research in trying to define my pain. Only much
later did I realize that what I felt was out of the norm. I knew
I was suffering from symptoms somewhat like PTSD (Post
Traumatic Stress Disorder) where a painful incident is long
remembered; the sounds resonated in my head for years.
When I was about sixteen, I discovered the disorder
called misophonia, which was researched and given a name
by Professors Jastreboff PhD, a husband-and-wife team. My
family was shocked that I had a real disorder. There is strong
evidence indicating that misophonia is neurological, but it
remains unclear to what degree nurture has an effect.
DebbieHirsch: WHAT IS MISOPHONIA?
Professor Jastreboff: Misophonia is a learned reaction. The
repetition affects the sequential part of the brain. Imagine
when talking I make this clicking noise with my pen; open,
close, open, close, open and close. It is nothing special, a
common noise; a normal patient would not react to it. But
imagine every time I make this sound for 20 seconds a per-
son receives a 50,000-volt shock; sound, shock, sound, shock
for 20 seconds. That person will until the end of his life be
jumping out of his skin when he hears the sound of a click
of a pen. This is an extreme example of training subjects
to hate a sound. That is why a person can hear loud music,
laughing and have no effect but the click of a pen will cause
pain. The loudness has nothing to do with it.
DebbieHirsch: HOW DID YOU DISCOVER MISOPHONIA?
Pawel J. Jastreboff, PhD, ScD: While my wife, Margaret M.
Jastreboff, PhD and I were practicing in our audiology de-
partment which specializes in tinnitus and hyperacusis, we
found that there were people who had a range of very pow-
erful reactions to just annoyance from patterns of sounds.
Basically it was not the physical part of the sound which is
similar to hyperacusis, but from the sound which had a spe-
cific pattern. It could be a certain voice or an plane flying low
close to the ground, clicks of a keyboard, someone drinking.
Yet, at the same time, the patient could tolerate other loud
sounds.
DebbieHirsch: DID YOU FIND A TREATMENT FOR
MISOPHONIA SUFFERERS?
Professor Jastreboff: We published the first journal about
misophoniain2001andthenin2002IadaptedtheTRT(Tin-
nitus Retraining Therapy) method for misophonia based on
four protocols, which we call the “Jastreboff method.” The
first three are simple and easy to teach and implement pro-
tocols. The fourth, however, is complicated.
Interview with Professo
DIAGNOSTICLEVELSOFMISOPHONIA Level 1:
People do not have a significant
issue with noise, but may
recognize that sometimes there is
discomfort.
“I am not comfortable with big
gatherings and all the noise.”
Level 2:
There is awareness that a trigger
is bothering them and they feel
uncomfortable, but not a fight-
or-flight response. If it is not
too much trouble they remove
themselves from the situation.
“If we are having company, I will find a
reason to leave the room if they chew
with their mouths open.”
Level 3:
At this level, people find it too
difficult to endure the trigger
event. They may leave or ask
politely for the offending sound to
stop.
“I’ve learned to just leave the room
when my son slurps his ice cream or I
can get really angry.”
Level 4:
A person has not had an
experience of a fight-or-flight
response, yet they may feel tense
and angered by the trigger.
Attempts of plugging one’s ears,
crying or feeling crazy are normal
reactions at this point.
“This thing is going to drive me insane.
I’ve already had multiple panic attacks.”
Level 5:
People report more
confrontational coping
mechanisms which could feel as
panic. Anger, disgust or offense
is usually felt towards the trigger
maker.
“I asked him stop chewing with an
open mouth, and he said he wasn’t ,and
started to dramatically show me the
differences between open and closed
mouth chewing. I had to cover my ears
and hold myself back from screaming.”
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4. or Jastreboff PhD, ScD
Sixty-five percent of our patients who came into our
clinic for tinnitus had misophonia. Of those that came
in with hyperacusis, 60% of them also had misophonia.
I teach people what to do so they know what to do when
they hear a sound so they don’t have a reaction.
DebbieHirsch: WHEN IS A PERSON MOST LIKELY TO
GET MISOPHONIA?
Professor Jastreboff: It starts usually when a child is ten
years or older. Yet, there are those who can get it later.
One of my patients developed misophonia at age
twelve when her grandfather moved into her house. He
ate in a very noisy manner. This grated on her in a very
heavy way. The parents, who wanted to teach her man-
ners, forced her to sit at the table with her grandfather.
She fostered a very negative feeling and soon her reac-
tions extended to everyone. She had problems with her
family in the home, and at school. She took care of her
needs by not eating with anyone. Now, after treatment,
she is fine.
Unfortunately, misophonia left untreated will gener-
ally get worse with time (based on how long they have
had it, not the age of the sufferer).
DebbieHirsch: ARE THERE REGULAR TRIGGERS?
ProfessorJastreboff: There are frequent triggers, but any-
thing can become one; it is very personal. The sounds of
eating are the usual triggers.
DebbieHirsch: WHAT SHOULD A FAMILY DO IF THEY
THINK SOMEONE HAS THIS ISSUE?
ProfessorJastreboff: Thefamilyshouldgethelpbecauseit
gets worse with time. It is not connected with age; it can
come with any time, since it is connected to a difficult
situation that leaves a lasting impression.
I have long pondered the philosophical implications.
MISOPHONIA IS ALSO called Elective Sound Sensitiv-
ity Syndrome. In either case, the names aptly clarifies its
meaning: the hatred of noise.
Misophonia is a newly defined disorder,recognized
in 2002 and named by Professors Pawel J. Jastreboff,
and his wife Margaret M. Jastreboff, who have dedicated
their careers to audiology issues. (See sidebar)
As of now, there are no statistics regarding the people
who suffer from misophonia, due to its novelty. In fact,
so little is known about this disorder that research has
still not clarified if misophonia stems from the part of
the brain that controls the “fight-or-flight sensory reflex”
or from the central nervous system.
For people with this condition, negative emotions (an-
ger, flight, hatred and irritation) are triggered by specific
Level 6:
People feel physical discomfort. Their
muscles become tense or they have
other physical reactions, besides the
need to either scream, mimic or snap at
the source of the offensive noise. They
experience a significant fight-or-flight
response
“I get intense rage, anxiety and panic. I feel
tense and nervous.”
Level 7:
At this level people are absorbed by the
trigger; they can’t distract themselves.
They respond with fight (demand
immediate cessation of the noise) or
leave abruptly. Sufferers may relive
the trigger sound and visual cues days,
weeks, months or even years after the
event.
“I try to focus and concentrate on something
else, but it is not possible. I end up covering
my ears and yelling.”
Level 8:
All mentioned symptoms are
amplified. A person may become
verbally abusive, threatening or
offensive.
“If you get a fork thrown at you, I guess then
you’ll stop slurping cereal.”
Level 9:
Very high level of stress is felt by a
person at this level. They feel intense
hatred of the sound and can either
get violent towards the sound (or the
person responsible for it) or inflict pain
on themselves to force distraction.
“Misophonia means constant pain and panic.
It means fearing you may hurt somebody on a
daily basis.”
Level 10:
People have exhibited violent behavior.
They have physically attacked another
person, animal or have caused
themselves a significant degree of
harm.
“I sometimes start shaking and hitting myself
when the sound keeps happening. I think I am
crazy. I can’t help it.”
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5. sounds. The sounds can be loud
or soft, but bother the sufferer re-
gardless of volume. At times even
the sight of an offending noise being
made without the sound (watching
someone eat and smacking their
lips) can cause pain as the body
tenses in anticipation.
People who have misophonia
become enraged by their specific
triggers, which may be slurping,
throat-clearing, nail-clipping,
chewing, drinking, tooth-brush-
ing, breathing, sniffing, talking,
sneezing, yawning, walking, gum-
chewing or popping, laughing,
snoring, swallowing, gulping, typ-
ing, coughing, humming, whis-
tling, singing, certain consonants
or repetitive sounds. Sufferers ex-
perience symptoms such as sweat-
ing, muscle tension and quickened
heartbeat. They feel real pain.
Living with someone who has
misophonia also has its challenges,
as illustrated by the stories below:
“Mydaughter,Rachel,picksonher
brother.Alot.‘Can’tyoueatwith
yourmouthclosed?!’isaconstant
refrainatthekitchentable,”Rachel’s
motherreported.“Ineverthought
toomuchaboutituntilIheardof
misophonia.Ithinkmydaughter
isonalow-levelofdiscomfort,but
itisdefinitelyroughtositatthe
tablewithherassheusuallyneeds
tomakesomesortofcomment.I
realizeditwassomethingmorethan
brother-sisterentanglementwhen
shecomplainedaboutourfamily’s
eatinghabits.Sheevenadmittedto
methatwhensheiswithfriendsshe
suffersfromtheirsmackingoflipsas
well.Nowthatwehaveaname,we
don’tgetoffendedwithherrequests.
Shehasalsostoppedfeelingher
brotherismakingnoisetopurposely
annoyher.”
“Sarawasdiagnosedwithmisopho-
nialastyear.Wehavebeenworking
onbehavioraltherapywithhersince.
Shecan’tstandbreathing,chewing
(evenherownchewing),andgeneral
noise.Wediscoveredifwekeepher
activelyengagedinconversation
duringmealtimeshedoesbetter.
Weallowedhertouseheadphones
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6. exp. 01/10/17 $30 Sign Up
Fee needed
atthetable,butslowlyhavebeen
weaningheroffondayswhenwe
areeating“quiet”foods.Shehas
stressballsshecansqueezewhen
feelingoverwhelmed.Iwould
suggestpeopletalkaboutitwith
theirfamilies/friends/co-workers.
Ialsoremindhertobepatientwith
others.Wetrytoaccommodate
Rachel,butsheneedstorealize
thatnoisesareageneralwayoflife
andmostofusdon’thearthemthe
wayshedoes.”
Chana,amotherofyoungboys,
founditdifficulttovisithercousin’s
familywhosuffersfrommisopho-
nia.“Whenmykidsplayedand
laughedloudlymycousinheldhis
earsandaskedmetoleavewith
thekidsbecauseofhispain.Iwas
tryingtofeedthematthetimeand
itwashardtoleave!Weallwalk
aroundasifthereareeggshellsto
avoidwhenheisnear,becausewe
don’twanttohithistriggerpoints.
Yetontheotherhand,wewerein
hishomeandhedoesneedtofeel
comfortablesomewhere.Itraises
interestingquestions...”
As for myself, I have found
relief in sound-canceling head-
phones. I wear them all the time.
If a fellow sufferer is unable to get
them, normal headphones and
relaxing music can work as well.
Use them whenever a trigger
sound is encountered, otherwise
the tension can build. The head-
phones work because sound is a
wave, and the headphones have
the perfect anti-wave action to
stop the wave of triggering noise.
I can hear anything that some-
one says to me without the many
sounds in the background that
can throw my misophonia into
high gear. Otherwise the only
help I can get is to use pain- or
anxiety-reducing medicine.
I wish I could tell you that I
have found a complete cure and
mylifeisallchanged,butitisnot.
Yet possessing the knowledge
that I am not alone and there are
scientists delving into this dis-
order gives me hope and valida-
tion.
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January4,2017 / THE MONSEY VIEW / 79
