Re: Dr. Jastrebof's Misophonia Protocol?

[Guest guest]

I'm new to this and was curious about this comment "our type of misophonia who DO NOT have hyperacusis/tinnitus". I only realized a couple of days ago that I have hyperacusis. Do most people on this list not have this? Is it uncommon to have everything? I never realized as a kid that everyone didn't have all this weird stuff going on in their ears. I thought having squealing in your ears was normal until I was an adult. To: Soundsensitivity Sent: Friday, June 1, 2012 12:42 PM Subject: Dr. Jastrebof's Misophonia Protocol?

I have been trying to find out what Dr. Jastrebof's protocol is for the type if misophonia that we suffer from for some time, can't find much if any info on the internet/I have in the past asked questions from members over at the Hyperacusis Network whom are very well read on Dr. Jastreboff's publications. I asked for a few specifics of these protocols specifically for patients with our type of misophonia who DO NOT have hyperacusis/tinnitus. Dr. Jastrebof as I understand it specializes mostly in treating people with tinnitus/hyperacusis. The questions I asked were mostly evaded. I have not found anyone over

there or in the archives who were treated by Dr. Jastrebof for our very specific type of misophonia. It would be great to hear from some of his patients.The only thing that I could get out of them is that he recommends this "music protocol" in which you pair the offensive sound with pleasant music over a period of weeks increasing the volume of the music gradually. This is reconditioning our autonomic and limbic system (which learns thru experience only) This experience of pairing the positive emotion from enjoying the music, with the trigger

sound supposedly results in the negative associations with the trigger to weaken and maybe even become neutral. Psychology 101. Who here has not already tried the music protocol??If he has changed his treatment protocol since, I know not, hard to tell from this article. Has anybody heard if he has been refining the music protocol?Personally I wouldn't spend any money seeing him until I found some actual data

that he has indeed helped people with our type of misophonia and how he treats them. If one has tinnitus/hyperacusis and the misophonia that occurs with those conditions (that would be the conditioned kind like "ouch I hate that noise because it hurts my ears), he is apparently the man to see, or so I have heard.Course I have no medical knowledge or aptitude so it is quite possible in my quest for information that I just didn't get it. Did anyone else get something about his protocol from this article or from talking to H. Network people that I didn't catch?. It seems that we are barely mentioned and its mostly about the definition of the word

misophonia?Comments on the article are welcome here. I wouldn't go discuss over where the article is posted because two or three sharks swim in the water over there looking to pick a fight, ;-) this will only create more negative associations with misophonia, and who needs that.Decreased sound tolerance (DST): hyperacusis and misophonia Pawel J. Jastreboff, Ph.D., Sc.D., M.B.A. and Margaret M. Jastreboff, Ph.D.Emory University School of Medicine & Jastreboff Hearing Disorders

Foundation, Inc. (This text contains some information which was presented at the lecture during AAA Annual meeting, Boston 2012) Sounds

of different pitch, loudness, spectral complexity, and duration may be

to some people pleasant, but to others neutral, the same sounds can be

unpleasant, uncomfortable, annoying or even hurtful to others. There

are many studies related to the effects of sound on humans focused on

psychological consequences, general health issues, engineering

challenges, development of new technologies, environmental problems.

Studies with the use of non-verbal digitized sounds showed that when

presented on a comfortable level, on the average they induce similar

emotional responses in people from different countries and backgrounds. Nevertheless,

there is a significant group of people whose lives are significantly

affected in the negative manner by the sounds not significant to other

people and who suffer due to decreased tolerance to sound. Interestingly,

it is not simply the loudness, pitch, and duration of sound which cause

a problem, but these factors are most commonly considered when offering

advice to patients. In the case of sensitivity

to louder sounds the most common advice is to use ear protection and

avoiding these sounds, which unfortunately frequently leads to

worsening of the problem. Moreover, patients' complaints are frequently

classified as exclusively psychological or behavioral problems and

treated accordingly to this diagnosis. It is not unusual that patients' problems are simply ignored and there is no help offered. Decreased

sound tolerance may have profound impact on patients' lives as it may

restrain exposure to louder environment, prevent them from work, reduce

social interactions, negatively affect family life and, in extreme

cases, it may control the patients' life. Even

milder severity DST could affect quality of life by interfering

everyday activities, e.g., driving car, shopping, going to restaurants,

going to movies, attending sport events, use of noisy tools, hair

dryer, vacuum cleaner, lawn mower, listening to music or TV. Certain

triggering factors for DSTare commonly reported by patients such as:

chronic exposure to sound, e.g., at work, school, explosion and impulse

noise, e.g., guns, fireworks; head injury, surgery of the head

(particularly involving ear); stress associated with an event /

activity involving sound, e.g., dental procedure, wedding, concert,

participating for first time in summer camp, eating in new, stressful

surrounding, cafeteria in new school or in college, sound of eating of

a new unfriendly person, sounds after moving to a new house or to

college. Some medical problems are linked to DST with tinnitus being most common. Lyme

disease, withdrawal from benzodiazepines and tensor tympani syndrome,

some surgical procedure, genetic disorder ( syndrome) and autism

have been linked to DST as well. There is still lack of agreement regarding definition of decreased sound tolerance. Decreased

sound tolerance canbe defined as being present when a subject exhibits

negative reactions as a result of exposure to sound that would not

evoke the same reaction in an average listener. Reported

reactions include discomfort, distress, annoyance, anxiety, variety of

emotional reactions, pain, fear and other negative responses. In

the past two phenomena, hyperacusis and phonophobia have been linked to

DST: 1) Hyperacusis - when subject reacts negatively to all "louder

sounds" and 2) Phonophobia - when subjectis "afraid of specific sound

or one's own voice." In

1990's when TRT was developed and used to help tinnitus patients, it

became obvious to us that many tinnitus patients and actually some

people without bothersome tinnitus as well, complain about discomfort

caused by sound. In our work we always pay big

attention to patients' description of their problems and through this

we have been gradually accumulating clinical knowledge on how to help

patients in the most effective manner. In 2000 it

become evident that while about 60% of our tinnitus patients exhibited

DST, only a minority of them reacted to loud sound disregarding their

meaning and situation when they were exposed to sound. The majority of patients reacted negatively only to specific patterns of

sound frequently (but not always) associated with specific situations

/places, e.g., neighbor playing music; sound of eating, chewing,

swallowing at home or at school; voices of specific people, clicking

sound, e.g., copy machine; running water; crackling sound, e.g., paper,

fireplace; high flying airplanes. At the same

time these patients could tolerate even high level of other sounds,

e.g., loud music or noise of busy street. This category of patients did

not fit into a hyperacusis category. A

relatively small group of patients expressed fearful reactions to sound

while others talk specifically about different emotions, e.g.,

discomfort, dislike and they were strongly opposed to their condition

being described as phonophobia. With some hesitation regarding introducing a new term it appeared to develop a word describing these complaints. We

askedfor help from Guy Lee, Don at St. 's College of Cambridge

University, U.K., an expert in Greek and Latin literature, to provide a

list of pre- and postfixes which would convey a negative

reaction/attitude to something. He sent us about 20 different words, but none were perfect. Finally

we decided on the prefix"miso" meaning "hate" in Greek and we proposed

the new term, misophonia, to describe this subtype of DST. To

avoid word "hate," which is very powerful and has very strong negative

meaning, we used in writing or lectures a "diluted/milder" wording

"strong dislike" or even simply "dislike." Unfortunately,

some professionals and patients took the word literally and started to

associate misophonia with dislike of sound in general. The term was introduced into public domain in 2001 (Jastreboff, M.M., Jastreboff, P.J. Hyperacusis. Audiology On-line, 6-18-2001) and in peer-reviewed journal in 2002 (Jastreboff, M.M. and Jastreboff, P.J. Decreased sound tolerance and Tinnitus Retraining Therapy (TRT). Australian andNew Zealand Journal of Audiology. 24(2):74-81, 2002). DST

results from the summation of the effects of hyperacusis and

misophonia. The analysis of conditions when hyperacusis and misophonia

manifested themselves indicated different physiological mechanisms of

hyperacusis and misophonia. Therefore we have

proposed two types of definition for component of DST: behavioral and

based on presumed mechanisms involved in hyperacusis and misophonia. From

the behavioral point of view hyperacusis (occurring in about 25-30% of

tinnitus patients) is characterized by negative reaction to a sound

which depends only on its physical characteristics (i.e., spectrum,

intensity). Time course (coded in the phase of

spectrum) and meaning of the sound are irrelevant as well as the

content in which a sound occurs. Misophonia

(occurring in about 60% of tinnitus patients) is characterized by

negative reaction to a sound with a specific pattern and meaning. The physical characteristics of a sound (its spectrum, intensity) are secondary. The

reactions to sound depend on a patients' past history and depends on

non-auditory factors, e.g.,patient's previous evaluation of the sound,

the patient's psychological profile, and the context in which the sound

is presented. Under this definition phonophobia is a special case of misophonia when fear is a dominant emotion. Misophonia

increases awareness of external sounds and somato sounds (e.g., eating)

which are normally habituated and misophonia frequently induces tensor

tympani syndrome. Note that both hyperacusis and misophonia are evoking

the same emotional and autonomic (body) reactions and it is impossible

to discriminate between them on the basis of observed reactions. In

mechanism-based definitions hyperacusis reflects abnormally strong

reactivity of the auditory pathways to sound (overamplification of

sound-evoked activity), which only in turn yields activation of the

limbic and autonomic nervous systems (which are responsible for

emotional and body reactions). The functional connections between the auditory, the limbic and autonomic nervous systems are normal. On

the other hand misophonia reflects abnormally strong reactions of the

autonomic and limbic systems resulting from enhanced functional

connections between the auditory, limbic and autonomic systems for

specific patterns of sound. In pure misophonia the auditory system will function within the norm. Note

that there is a clear analogy between the mechanisms of tinnitus and

misophonia - the difference is in the initial signal, but the

mechanisms which generate these reactions are the same and involve

conditioned reflexes. Diagnosis of hyperacusis and misophonia is complex. Typically patients combine and confuse hyperacusis and misophonia. Typically audiological evaluation of DST involves measurement of Loudness

Discomfort Levels (LDL), i.e., measuring for pure tones of different

frequencies and the sound level when the patient reports strong

discomfort. For people who do not report problems with DST the average value for all tested frequencies is about 100 dBHL. LDL, however, are not sufficient for the diagnosis of hyperacusis or misophonia. When

a patient has hyperacusis the LDL show lower values (average typically

in 60-85 dB HL range), but low values alone are not proving the

presence of hyperacusis as they may be due to misophonia! In

misophonia both normal and low values are possible (range of 20 to 120

dB HL). Therefore, a specific, detailed interview is crucial for

diagnosis. Comparison of an audiogram and LDL

may, however, provide an assessment of the extent of misophonia for

some patients and the method has been described in our 2002 paper. In

practice hyperacusis and misophonia frequently occur together in

varying proportion, and in patientswith significant hyperacusis

misophonia is automatically created, as normal sounds will evoke

discomfort, and therefore create the conditioned reflexes. Once

misophonia is established, the reactions are governed by principles of

conditioned reflexes,e.g., reaction to the sound will be very fast and

will occur without need forthinking about the meaning of the sound, or

belief that the sound is bad for them. Common

recommendations for treatment of decreased sound tolerance are not

necessary helpful and actually may create the increase of the problem,

e.g., "avoid sound" or "use ear protection" because it will increase hyperacusis. Medications have no impact on DST, but may have potential negative side effects. Use of sound therapies based on desensitization may be helpful for hyperacusis, but have no or limited effect on misophonia. Evaluation and treatments of DST is included as an imperative and obligatory element of Tinnitus Retraining Therapy(TRT). Certain points are

particularly important. First,

there is a need to properly diagnose and differentiate hyperacusis and

misophonia as while patients' reactions to sounds may be the same, but

treatments of hyperacusis and misophonia are distinctively different. Second, effective treatment for hyperacusis is not helpful for misophonia! Third, effective treatment for misophonia is not particularly helpful for hyperacusis. Fourth,

when both hyperacusis and misophonia are initially present and

hyperacusis is successfully treated, typically misophonia increase and

there is no improvement observed at the behavioral level. Hyperacusis is treated in TRT by desensitization with variety of sounds combined with specific counseling aimed at DST. In the case of normal hearing ear level sound generators are recommended as a part of the sound therapy. When

hearing loss is present then combination instruments are optimal and

sound generators are not recommended. It is especiallyimportant for

hyperacusis patients to have an enriched sound environment day and

night, 24/7. This method is very effective and in majority of cases it is possible to achieve the cure. Treatment of misophonia with TRT is much more complex and takes longer time. Misophonia should be treated simultaneously with hyperacusis /tinnitus. In

addition to specific counseling, patients are advised to follow one of

4 categories of protocols which attempt to create an association

between variety of sounds with something positive. Protocol (1) has been published in our 2002 paper. These protocols are further modified to fit the needs of individual patients and typically more than one protocol is used. Note,

that while misophonic patients frequently benefit from the use of ear

level sound generators, they are not necessary for successful outcome

of the treatment. Sound generators alone without

specific protocols for misophonia have very limited usefulness.

Duration of treatment is generally similar to duration of tinnitus

treatment, but success rate is very high and in majority of cases it is

possible to achieve a cure. Interestingly,

successful treatment of misophonia restores habituation of external

sounds and somato sounds and typically removes tensor tympani syndrome.

The concept of misophonia is gradually gaining recognition. In recently published prestigious Texbook of Tinnitus misophonia is mentioned numerous times through the book and is discussed in detail in three chapters (Baguley,

D.M., McFerran, D.J. Hyperacusis and Disorders of Loudness Perception.

Ch 3: 13-23; Moller, A.A., Misophonia, Phonophobia, and"Exploding Head"

Syndrome. Ch4: 25-27, 2010; Jastreboff, P.J.Tinnitus Retraining Therapy. Ch 73:575-562. In: Texbook of Tinnitus. A.Moller, T Kleinjung, B. Langguth, D. DeRidder editors, Springer, 2010). The main points toremember:· Decreased sound tolerance accompany tinnitus insignificant proportion of cases (~60%) · Detailed

evaluation is necessary to diagnose the presence and extent of

hyperacusis and misophonia as while patients' reactions to sounds may

be the same, but treatments are distinctively different · Special protocols for misophonia are necessary · The use of ear level sound devices is crucial in hyperacusis

patients · Misophonic patients commonly benefits from sound generators as well, but it is possible to treat misophonia without any devices · Significant

improvement is observed in nearly all cases with decreased sound

tolerance, but both hyperacusis and misophonia need to be treated

concurrently · In majority of cases it is possible to achieve the cure for both hyperacusis and misophonia · Treatment

of hyperacusis and misophonia increases effectiveness of tinnitus

treatment and in some cases is crucial for achieving tinnitus control.© 2012 http://www.chat-hyperacusis.net/post/Decreased-sound-tolerance-%28DST%29-hyperacusis-and-misophonia-by-Dr.-Pawel-Jastreboff-5870424

[Guest guest]

There are some people who have two or three of those conditions.I have misophonia and hyperacusis, but not tinnitus. There are plenty who just have misophonia without the others, though.

---------------------------------------------------------

♥

" Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before. " -Holley Gerth ♥

 

I'm new to this and was curious about this comment " our type of misophonia who DO NOT have hyperacusis/tinnitus " . I only realized a couple of days ago that I have hyperacusis. Do most people on this list not have this? Is it uncommon to have everything? I never realized as a kid that everyone didn't have all this weird stuff going on in their ears. I thought having squealing in your ears was normal until I was an adult.

To: Soundsensitivity Sent: Friday, June 1, 2012 12:42 PM

Subject: Dr. Jastrebof's Misophonia Protocol?

 

I have been trying to find out what Dr. Jastrebof's protocol is for the type if misophonia that we suffer from for some time, can't find much if any info on the internet/

I have in the past asked questions from members over at the Hyperacusis Network whom are very well read on Dr. Jastreboff's publications. I asked for a few specifics of these protocols specifically for patients with our type of misophonia who DO NOT have hyperacusis/tinnitus. Dr. Jastrebof as I understand it specializes mostly in treating people with tinnitus/hyperacusis. The questions I asked were mostly evaded. I have not found anyone over

there or in the archives who were treated by Dr. Jastrebof for our very specific type of misophonia. It would be great to hear from some of his patients.

The only thing that I could get out of them is that he recommends this " music protocol " in which you pair the offensive sound with pleasant music over a period of weeks increasing the volume of the music gradually. This is reconditioning our autonomic and limbic system (which learns thru experience only) This experience of pairing the positive emotion from enjoying the music, with the trigger

sound supposedly results in the negative associations with the trigger to weaken and maybe even become neutral. Psychology 101. Who here has not already tried the music protocol??

If he has changed his treatment protocol since, I know not, hard to tell from this article. Has anybody heard if he has been refining the music protocol?

Personally I wouldn't spend any money seeing him until I found some actual data

that he has indeed helped people with our type of misophonia and how he treats them. If one has tinnitus/hyperacusis and the misophonia that occurs with those conditions (that would be the conditioned kind like " ouch I hate that noise because it hurts my ears), he is apparently the man to see, or so I have heard.

Course I have no medical knowledge or aptitude so it is quite possible in my quest for information that I just didn't get it. Did anyone else get something about his protocol from this article or from talking to H. Network people that I didn't catch?. It seems that we are barely mentioned and its mostly about the definition of the word

misophonia?Comments on the article are welcome here. I wouldn't go discuss over where the article is posted because two or three sharks swim in the water over there looking to pick a fight, ;-) this will only create more negative associations with misophonia, and who needs that.

Decreased sound tolerance (DST): hyperacusis and misophonia

 Pawel J. Jastreboff, Ph.D., Sc.D., M.B.A. and  Margaret M. Jastreboff, Ph.D.

Emory University School of Medicine & Jastreboff Hearing Disorders

Foundation, Inc. 

(This text contains some information which was presented at the lecture during AAA Annual meeting, Boston 2012)

  

            Sounds

of different pitch, loudness, spectral complexity, and duration may be

to some people pleasant, but to others neutral, the same sounds can be

unpleasant, uncomfortable, annoying or even hurtful to others.  There

are many studies related to the effects of sound on humans focused on

psychological consequences, general health issues, engineering

challenges, development of new technologies, environmental problems.

Studies with the use of non-verbal digitized sounds showed that when

presented on a comfortable level, on the average they induce similar

emotional responses in people from different countries and backgrounds.  Nevertheless,

there is a significant group of people whose lives are significantly

affected in the negative manner by the sounds not significant to other

people and who suffer due to decreased tolerance to sound.  Interestingly,

it is not simply the loudness, pitch, and duration of sound which cause

a problem, but these factors are most commonly considered when offering

advice to patients.  In the case of sensitivity

to louder sounds the most common advice is to use ear protection and

avoiding these sounds, which unfortunately frequently leads to

worsening of the problem. Moreover, patients' complaints are frequently

classified as exclusively psychological or behavioral problems and

treated accordingly to this diagnosis.  It is not unusual that patients' problems are simply ignored and there is no help offered.  

            Decreased

sound tolerance may have profound impact on patients' lives as it may

restrain exposure to louder environment, prevent them from work, reduce

social interactions, negatively affect family life and, in extreme

cases, it may control the patients' life.  Even

milder severity DST could affect quality of life by interfering

everyday activities, e.g., driving car, shopping, going to restaurants,

going to movies, attending sport events, use of noisy tools, hair

dryer, vacuum cleaner, lawn mower, listening to music or TV.  

            Certain

triggering factors for DSTare commonly reported by patients such as:

chronic exposure to sound, e.g., at work, school, explosion and impulse

noise, e.g., guns, fireworks; head injury, surgery of the head

(particularly involving ear); stress associated with an event /

activity involving sound, e.g., dental procedure, wedding, concert,

participating for first time in summer camp, eating in new, stressful

surrounding, cafeteria in new school or in college, sound of eating of

a new unfriendly person, sounds after moving to a new house or to

college.  Some medical problems are linked to DST with tinnitus being most common.  Lyme

disease, withdrawal from benzodiazepines and tensor tympani syndrome,

some surgical procedure, genetic disorder ( syndrome) and autism

have been linked to DST as well.   

            There is still lack of agreement regarding definition of decreased sound tolerance.  Decreased

sound tolerance canbe defined as being present when a subject exhibits

negative reactions as a result of exposure to sound that would not

evoke the same reaction in an average listener.  Reported

reactions include discomfort, distress, annoyance, anxiety, variety of

emotional reactions, pain, fear and other negative responses.  In

the past two phenomena, hyperacusis and phonophobia have been linked to

DST: 1) Hyperacusis - when subject reacts negatively to all " louder

sounds " and  2) Phonophobia - when subjectis " afraid of specific sound

or one's own voice. "    

            In

1990's when TRT was developed and used to help tinnitus patients, it

became obvious to us that many tinnitus patients and actually some

people without bothersome tinnitus as well, complain about discomfort

caused by sound.  In our work we always pay big

attention to patients' description of their problems and through this

we have been gradually accumulating clinical knowledge on how to help

patients in the most effective manner. In 2000 it

become evident that while about 60% of our tinnitus patients exhibited

DST, only a minority of them reacted to loud sound disregarding their

meaning and situation when they were exposed to sound. The majority of patients reacted negatively only to specific patterns of

sound frequently (but not always) associated with specific situations

/places, e.g., neighbor playing music; sound of eating, chewing,

swallowing at home or at school; voices of specific people, clicking

sound, e.g., copy machine; running water; crackling sound, e.g., paper,

fireplace; high flying airplanes.  At the same

time these patients could tolerate even high level of other sounds,

e.g., loud music or noise of busy street. This category of patients did

not fit into a hyperacusis category.  A

relatively small group of patients expressed fearful reactions to sound

while others talk specifically about different emotions, e.g.,

discomfort, dislike and they were strongly opposed to their condition

being described as phonophobia.  

            With some hesitation regarding introducing a new term it appeared to develop a word describing these complaints.  We

askedfor help from Guy Lee, Don at St. 's College of Cambridge

University, U.K., an expert in Greek and Latin literature, to provide a

list of pre- and postfixes which would convey a negative

reaction/attitude to something.  He sent us about 20 different words, but none were perfect.  Finally

we decided on the prefix " miso " meaning " hate " in Greek and we proposed

the new term, misophonia, to describe this subtype of DST.  To

avoid word " hate, " which is very powerful and has very strong negative

meaning, we used in writing or lectures a " diluted/milder " wording

" strong dislike " or even simply " dislike. "   Unfortunately,

some professionals and patients took the word literally and started to

associate misophonia with dislike of sound in general.  

            The term was introduced into public domain in 2001 (Jastreboff, M.M., Jastreboff, P.J.  Hyperacusis.  Audiology On-line, 6-18-2001) and in peer-reviewed journal in 2002 (Jastreboff, M.M. and Jastreboff, P.J.  Decreased sound tolerance and Tinnitus Retraining Therapy (TRT).  Australian andNew Zealand Journal of Audiology. 24(2):74-81, 2002).  DST

results from the summation of the effects of hyperacusis and

misophonia. The analysis of conditions when hyperacusis and misophonia

manifested themselves indicated different physiological mechanisms of

hyperacusis and misophonia.  Therefore we have

proposed two types of definition for component of DST: behavioral and

based on presumed mechanisms involved in hyperacusis and misophonia.   

            From

the behavioral point of view hyperacusis (occurring in about 25-30% of

tinnitus patients) is characterized by negative reaction to a sound

which depends only on its physical characteristics (i.e., spectrum,

intensity). Time course (coded in the phase of

spectrum) and meaning of the sound are irrelevant as well as the

content in which a sound occurs.   

            Misophonia

(occurring in about 60% of tinnitus patients) is characterized by

negative reaction to a sound with a specific pattern and meaning.  The physical characteristics of a sound (its spectrum, intensity) are secondary.  The

reactions to sound depend on a patients' past history and depends on

non-auditory factors, e.g.,patient's previous evaluation of the sound,

the patient's psychological profile, and the context in which the sound

is presented.  Under this definition phonophobia is a special case of misophonia when fear is a dominant emotion.  Misophonia

increases awareness of external sounds and somato sounds (e.g., eating)

which are normally habituated and misophonia frequently induces tensor

tympani syndrome. Note that both hyperacusis and misophonia are evoking

the same emotional and autonomic (body) reactions and it is impossible

to discriminate between them on the basis of observed reactions.   

            In

mechanism-based definitions hyperacusis reflects abnormally strong

reactivity of the auditory pathways to sound (overamplification of

sound-evoked activity), which only in turn yields activation of the

limbic and autonomic nervous systems (which are responsible for

emotional and body reactions).  The functional connections between the auditory, the limbic and autonomic nervous systems are normal. 

             On

the other hand misophonia reflects abnormally strong reactions of the

autonomic and limbic systems resulting from enhanced functional

connections between the auditory, limbic and autonomic systems for

specific patterns of sound.  In pure misophonia the auditory system will function within the norm.  Note

that there is a clear analogy between the mechanisms of tinnitus and

misophonia - the difference is in the initial signal, but the

mechanisms which generate these reactions are the same and involve

conditioned reflexes.   

            Diagnosis of hyperacusis and misophonia is complex. Typically patients combine and confuse hyperacusis and misophonia.  Typically audiological evaluation of DST involves measurement of Loudness

Discomfort Levels (LDL), i.e., measuring for pure tones of different

frequencies and the sound level when the patient reports strong

discomfort.  For people who do not report problems with DST the average value for all tested frequencies is about 100 dBHL.  LDL, however, are not sufficient for the diagnosis of hyperacusis or misophonia. When

a patient has hyperacusis the LDL show lower values (average typically

in 60-85 dB HL range), but low values alone are not proving the

presence of hyperacusis as they may be due to misophonia!  In

misophonia both normal and low values are possible (range of 20 to 120

dB HL). Therefore, a specific, detailed interview is crucial for

diagnosis.  Comparison of an audiogram and LDL

may, however, provide an assessment of the extent of misophonia for

some patients and the method has been described in our 2002 paper.   

            In

practice hyperacusis and misophonia frequently occur together in

varying proportion, and in patientswith significant hyperacusis

misophonia is automatically created, as normal sounds will evoke

discomfort, and therefore create the conditioned reflexes.  Once

misophonia is established, the reactions are governed by principles of

conditioned reflexes,e.g., reaction to the sound will be very fast and

will occur without need forthinking about the meaning of the sound, or

belief that the sound is bad for them.   

            Common

recommendations for treatment of decreased sound tolerance are not

necessary helpful and actually may create the increase of the problem,

e.g., " avoid sound " or " use ear protection "  because it will increase hyperacusis.  Medications have no impact on DST, but may have potential negative side effects. Use of sound therapies based on desensitization may be helpful for hyperacusis, but have no or limited effect on misophonia. 

             Evaluation and treatments of DST is included as an imperative and obligatory element of Tinnitus Retraining Therapy(TRT).  Certain points are

particularly important.   

First,

there is a need to properly diagnose and differentiate hyperacusis and

misophonia as while patients' reactions to sounds may be the same, but

treatments of hyperacusis and misophonia are distinctively different.  Second, effective treatment for hyperacusis is not helpful for misophonia! 

 Third, effective treatment for misophonia is not particularly helpful for hyperacusis. 

 Fourth,

when both hyperacusis and misophonia are initially present and

hyperacusis is successfully treated, typically misophonia increase and

there is no improvement observed at the behavioral level.  

            Hyperacusis is treated in TRT by desensitization with variety of sounds combined with specific counseling aimed at DST.  In the case of normal hearing ear level sound generators are recommended as a part of the sound therapy.  When

hearing loss is present then combination instruments are optimal and

sound generators are not recommended. It is especiallyimportant for

hyperacusis patients to have an enriched sound environment day and

night, 24/7.  This method is very effective and in majority of cases it is possible to achieve the cure.  

            Treatment of misophonia with TRT is much more complex and takes longer time. Misophonia should be treated simultaneously with hyperacusis /tinnitus.  In

addition to specific counseling, patients are advised to follow one of

4 categories of protocols which attempt to create an association

between variety of sounds with something positive.  Protocol (1) has been published in our 2002 paper.  These protocols are further modified to fit the needs of individual patients and typically more than one protocol is used. Note,

that while misophonic patients frequently benefit from the use of ear

level sound generators, they are not necessary for successful outcome

of the treatment.  Sound generators alone without

specific protocols for misophonia have very limited usefulness.

Duration of treatment is generally similar to duration of tinnitus

treatment, but success rate is very high and in majority of cases it is

possible to achieve a cure.  Interestingly,

successful treatment of misophonia restores habituation of external

sounds and somato sounds and typically removes tensor tympani syndrome.

             The concept of misophonia is gradually gaining recognition.  In recently published prestigious Texbook of Tinnitus misophonia is mentioned numerous times through the book and is discussed in detail in three chapters (Baguley,

D.M., McFerran, D.J. Hyperacusis and Disorders of Loudness Perception.

Ch 3: 13-23; Moller, A.A., Misophonia, Phonophobia, and " Exploding Head "

Syndrome.  Ch4: 25-27, 2010;  Jastreboff, P.J.Tinnitus Retraining Therapy.  Ch 73:575-562.  In: Texbook of Tinnitus. A.Moller, T Kleinjung, B. Langguth, D. DeRidder editors, Springer, 2010).

 The main points toremember:

·        Decreased sound tolerance accompany tinnitus insignificant proportion of cases (~60%)

·        Detailed

evaluation is necessary to diagnose the presence and extent of

hyperacusis and misophonia as while patients' reactions to sounds may

be the same, but treatments are distinctively different ·        Special protocols for misophonia are necessary

·        The use of ear level sound devices is crucial in hyperacusis

patients ·        Misophonic patients commonly benefits from sound generators as well, but it is possible to treat misophonia without any devices 

·        Significant

improvement is observed in nearly all cases with decreased sound

tolerance, but both hyperacusis and misophonia need to be treated

concurrently ·        In majority of cases it is possible to achieve the cure for both hyperacusis and misophonia

·        Treatment

of hyperacusis and misophonia increases effectiveness of tinnitus

treatment and in some cases is crucial for achieving tinnitus control.© 2012

 http://www.chat-hyperacusis.net/post/Decreased-sound-tolerance-%28DST%29-hyperacusis-and-misophonia-by-Dr.-Pawel-Jastreboff-5870424 

 

[Guest guest]

Hi , Sorry to hear about your hyperacusis, squealing in your ears sounds like it could be tinnitus too? Have you made an appointment to have your ears checked, there are treatments available.Dr. who has been collecting the data on us, I am preety sure mentioned that the majority do not have hyperacusis or tinnitus. Actually many of us prefer to be in loud places where the small noises are drowned out, unlike those with hyperacusis. There are people who post here that do have hyperacusis and/or tinnitus and our type of misophonia, but if memory serves most commonly those posting here do not have other auditory problems.Sorry if you already said but what kind of sounds do you have a decreased tolerance

for? To: "Soundsensitivity " <Soundsensitivity > Sent: Friday, June 1, 2012 3:06 PM Subject: Re: Dr. Jastrebof's Misophonia Protocol?

I'm new to this and was curious about this comment "our type of misophonia who DO NOT have hyperacusis/tinnitus". I only realized a couple of days ago that I have hyperacusis. Do most people on this list not have this? Is it uncommon to have everything? I never realized as a kid that everyone didn't have all this weird stuff going on in their ears. I thought having squealing in your ears was normal until I was an adult. To: Soundsensitivity Sent: Friday, June 1, 2012 12:42 PM Subject: Dr. Jastrebof's Misophonia Protocol?

I have been trying to find out what Dr. Jastrebof's protocol is for the type if misophonia that we suffer from for some time, can't find much if any info on the internet/I have in the past asked questions from members over at the Hyperacusis Network whom are very well read on Dr. Jastreboff's publications. I asked for a few specifics of these protocols specifically for patients with our type of misophonia who DO NOT have hyperacusis/tinnitus. Dr. Jastrebof as I understand it specializes mostly in treating people with tinnitus/hyperacusis. The questions I asked were mostly evaded. I have not found anyone

over

there or in the archives who were treated by Dr. Jastrebof for our very specific type of misophonia. It would be great to hear from some of his patients.The only thing that I could get out of them is that he recommends this "music protocol" in which you pair the offensive sound with pleasant music over a period of weeks increasing the volume of the music gradually. This is reconditioning our autonomic and limbic system (which learns thru experience only) This experience of pairing the positive emotion from enjoying the music, with the

trigger

sound supposedly results in the negative associations with the trigger to weaken and maybe even become neutral. Psychology 101. Who here has not already tried the music protocol??If he has changed his treatment protocol since, I know not, hard to tell from this article. Has anybody heard if he has been refining the music protocol?Personally I wouldn't spend any money seeing him until I found some

actual data

that he has indeed helped people with our type of misophonia and how he treats them. If one has tinnitus/hyperacusis and the misophonia that occurs with those conditions (that would be the conditioned kind like "ouch I hate that noise because it hurts my ears), he is apparently the man to see, or so I have heard.Course I have no medical knowledge or aptitude so it is quite possible in my quest for information that I just didn't get it. Did anyone else get something about his protocol from this article or from talking to H. Network people that I didn't catch?. It seems that we are barely mentioned and its mostly about the definition of

the word

misophonia?Comments on the article are welcome here. I wouldn't go discuss over where the article is posted because two or three sharks swim in the water over there looking to pick a fight, ;-) this will only create more negative associations with misophonia, and who needs that.Decreased sound tolerance (DST): hyperacusis and misophonia Pawel J. Jastreboff, Ph.D., Sc.D., M.B.A. and Margaret M. Jastreboff, Ph.D.Emory University School of Medicine & Jastreboff Hearing Disorders

Foundation, Inc. (This text contains some information which was presented at the lecture during AAA Annual meeting, Boston 2012) Sounds

of different pitch, loudness, spectral complexity, and duration may be

to some people pleasant, but to others neutral, the same sounds can be

unpleasant, uncomfortable, annoying or even hurtful to others. There

are many studies related to the effects of sound on humans focused on

psychological consequences, general health issues, engineering

challenges, development of new technologies, environmental problems.

Studies with the use of non-verbal digitized sounds showed that when

presented on a comfortable level, on the average they induce similar

emotional responses in people from different countries and backgrounds. Nevertheless,

there is a significant group of people whose lives are significantly

affected in the negative manner by the sounds not significant to other

people and who suffer due to decreased tolerance to sound. Interestingly,

it is not simply the loudness, pitch, and duration of sound which cause

a problem, but these factors are most commonly considered when offering

advice to patients. In the case of sensitivity

to louder sounds the most common advice is to use ear protection and

avoiding these sounds, which unfortunately frequently leads to

worsening of the problem. Moreover, patients' complaints are frequently

classified as exclusively psychological or behavioral problems and

treated accordingly to this diagnosis. It is not unusual that patients' problems are simply ignored and there is no help offered. Decreased

sound tolerance may have profound impact on patients' lives as it may

restrain exposure to louder environment, prevent them from work, reduce

social interactions, negatively affect family life and, in extreme

cases, it may control the patients' life. Even

milder severity DST could affect quality of life by interfering

everyday activities, e.g., driving car, shopping, going to restaurants,

going to movies, attending sport events, use of noisy tools, hair

dryer, vacuum cleaner, lawn mower, listening to music or TV. Certain

triggering factors for DSTare commonly reported by patients such as:

chronic exposure to sound, e.g., at work, school, explosion and impulse

noise, e.g., guns, fireworks; head injury, surgery of the head

(particularly involving ear); stress associated with an event /

activity involving sound, e.g., dental procedure, wedding, concert,

participating for first time in summer camp, eating in new, stressful

surrounding, cafeteria in new school or in college, sound of eating of

a new unfriendly person, sounds after moving to a new house or to

college. Some medical problems are linked to DST with tinnitus being most common. Lyme

disease, withdrawal from benzodiazepines and tensor tympani syndrome,

some surgical procedure, genetic disorder ( syndrome) and autism

have been linked to DST as well. There is still lack of agreement regarding definition of decreased sound tolerance. Decreased

sound tolerance canbe defined as being present when a subject exhibits

negative reactions as a result of exposure to sound that would not

evoke the same reaction in an average listener. Reported

reactions include discomfort, distress, annoyance, anxiety, variety of

emotional reactions, pain, fear and other negative responses. In

the past two phenomena, hyperacusis and phonophobia have been linked to

DST: 1) Hyperacusis - when subject reacts negatively to all "louder

sounds" and 2) Phonophobia - when subjectis "afraid of specific sound

or one's own voice." In

1990's when TRT was developed and used to help tinnitus patients, it

became obvious to us that many tinnitus patients and actually some

people without bothersome tinnitus as well, complain about discomfort

caused by sound. In our work we always pay big

attention to patients' description of their problems and through this

we have been gradually accumulating clinical knowledge on how to help

patients in the most effective manner. In 2000 it

become evident that while about 60% of our tinnitus patients exhibited

DST, only a minority of them reacted to loud sound disregarding their

meaning and situation when they were exposed to sound. The majority of patients reacted negatively only to specific patterns of

sound frequently (but not always) associated with specific situations

/places, e.g., neighbor playing music; sound of eating, chewing,

swallowing at home or at school; voices of specific people, clicking

sound, e.g., copy machine; running water; crackling sound, e.g., paper,

fireplace; high flying airplanes. At the same

time these patients could tolerate even high level of other sounds,

e.g., loud music or noise of busy street. This category of patients did

not fit into a hyperacusis category. A

relatively small group of patients expressed fearful reactions to sound

while others talk specifically about different emotions, e.g.,

discomfort, dislike and they were strongly opposed to their condition

being described as phonophobia. With some hesitation regarding introducing a new term it appeared to develop a word describing these complaints. We

askedfor help from Guy Lee, Don at St. 's College of Cambridge

University, U.K., an expert in Greek and Latin literature, to provide a

list of pre- and postfixes which would convey a negative

reaction/attitude to something. He sent us about 20 different words, but none were perfect. Finally

we decided on the prefix"miso" meaning "hate" in Greek and we proposed

the new term, misophonia, to describe this subtype of DST. To

avoid word "hate," which is very powerful and has very strong negative

meaning, we used in writing or lectures a "diluted/milder" wording

"strong dislike" or even simply "dislike." Unfortunately,

some professionals and patients took the word literally and started to

associate misophonia with dislike of sound in general. The term was introduced into public domain in 2001 (Jastreboff, M.M., Jastreboff, P.J. Hyperacusis. Audiology On-line, 6-18-2001) and in peer-reviewed journal in 2002 (Jastreboff, M.M. and Jastreboff, P.J. Decreased sound tolerance and Tinnitus Retraining Therapy (TRT). Australian andNew Zealand Journal of Audiology. 24(2):74-81, 2002).

DST

results from the summation of the effects of hyperacusis and

misophonia. The analysis of conditions when hyperacusis and misophonia

manifested themselves indicated different physiological mechanisms of

hyperacusis and misophonia. Therefore we have

proposed two types of definition for component of DST: behavioral and

based on presumed mechanisms involved in hyperacusis and misophonia. From

the behavioral point of view hyperacusis (occurring in about 25-30% of

tinnitus patients) is characterized by negative reaction to a sound

which depends only on its physical characteristics (i.e., spectrum,

intensity). Time course (coded in the phase of

spectrum) and meaning of the sound are irrelevant as well as the

content in which a sound occurs. Misophonia

(occurring in about 60% of tinnitus patients) is characterized by

negative reaction to a sound with a specific pattern and meaning. The physical characteristics of a sound (its spectrum, intensity) are secondary. The

reactions to sound depend on a patients' past history and depends on

non-auditory factors, e.g.,patient's previous evaluation of the sound,

the patient's psychological profile, and the context in which the sound

is presented. Under this definition phonophobia is a special case of misophonia when fear is a dominant emotion. Misophonia

increases awareness of external sounds and somato sounds (e.g., eating)

which are normally habituated and misophonia frequently induces tensor

tympani syndrome. Note that both hyperacusis and misophonia are evoking

the same emotional and autonomic (body) reactions and it is impossible

to discriminate between them on the basis of observed reactions. In

mechanism-based definitions hyperacusis reflects abnormally strong

reactivity of the auditory pathways to sound (overamplification of

sound-evoked activity), which only in turn yields activation of the

limbic and autonomic nervous systems (which are responsible for

emotional and body reactions). The functional connections between the auditory, the limbic and autonomic nervous systems are normal. On

the other hand misophonia reflects abnormally strong reactions of the

autonomic and limbic systems resulting from enhanced functional

connections between the auditory, limbic and autonomic systems for

specific patterns of sound. In pure misophonia the auditory system will function within the norm. Note

that there is a clear analogy between the mechanisms of tinnitus and

misophonia - the difference is in the initial signal, but the

mechanisms which generate these reactions are the same and involve

conditioned reflexes. Diagnosis of hyperacusis and misophonia is complex. Typically patients combine and confuse hyperacusis and misophonia. Typically audiological evaluation of DST involves measurement of Loudness

Discomfort Levels (LDL), i.e., measuring for pure tones of different

frequencies and the sound level when the patient reports strong

discomfort. For people who do not report problems with DST the average value for all tested frequencies is about 100 dBHL. LDL, however, are not sufficient for the diagnosis of hyperacusis or misophonia. When

a patient has hyperacusis the LDL show lower values (average typically

in 60-85 dB HL range), but low values alone are not proving the

presence of hyperacusis as they may be due to misophonia! In

misophonia both normal and low values are possible (range of 20 to 120

dB HL). Therefore, a specific, detailed interview is crucial for

diagnosis. Comparison of an audiogram and LDL

may, however, provide an assessment of the extent of misophonia for

some patients and the method has been described in our 2002 paper. In

practice hyperacusis and misophonia frequently occur together in

varying proportion, and in patientswith significant hyperacusis

misophonia is automatically created, as normal sounds will evoke

discomfort, and therefore create the conditioned reflexes. Once

misophonia is established, the reactions are governed by principles of

conditioned reflexes,e.g., reaction to the sound will be very fast and

will occur without need forthinking about the meaning of the sound, or

belief that the sound is bad for them. Common

recommendations for treatment of decreased sound tolerance are not

necessary helpful and actually may create the increase of the problem,

e.g., "avoid sound" or "use ear protection" because it will increase hyperacusis. Medications have no impact on DST, but may have potential negative side effects. Use of sound therapies based on desensitization may be helpful for hyperacusis, but have no or limited effect on misophonia. Evaluation and treatments of DST is included as an imperative and obligatory element of Tinnitus Retraining Therapy(TRT). Certain points are

particularly important. First,

there is a need to properly diagnose and differentiate hyperacusis and

misophonia as while patients' reactions to sounds may be the same, but

treatments of hyperacusis and misophonia are distinctively different. Second, effective treatment for hyperacusis is not helpful for misophonia! Third, effective treatment for misophonia is not particularly helpful for hyperacusis.

Fourth,

when both hyperacusis and misophonia are initially present and

hyperacusis is successfully treated, typically misophonia increase and

there is no improvement observed at the behavioral level. Hyperacusis is treated in TRT by desensitization with variety of sounds combined with specific counseling aimed at DST. In the case of normal hearing ear level sound generators are recommended as a part of the sound therapy. When

hearing loss is present then combination instruments are optimal and

sound generators are not recommended. It is especiallyimportant for

hyperacusis patients to have an enriched sound environment day and

night, 24/7. This method is very effective and in majority of cases it is possible to achieve the cure. Treatment of misophonia with TRT is much more complex and takes longer time. Misophonia should be treated simultaneously with hyperacusis /tinnitus. In

addition to specific counseling, patients are advised to follow one of

4 categories of protocols which attempt to create an association

between variety of sounds with something positive. Protocol (1) has been published in our 2002 paper. These protocols are further modified to fit the needs of individual patients and typically more than one protocol is used. Note,

that while misophonic patients frequently benefit from the use of ear

level sound generators, they are not necessary for successful outcome

of the treatment. Sound generators alone without

specific protocols for misophonia have very limited usefulness.

Duration of treatment is generally similar to duration of tinnitus

treatment, but success rate is very high and in majority of cases it is

possible to achieve a cure. Interestingly,

successful treatment of misophonia restores habituation of external

sounds and somato sounds and typically removes tensor tympani syndrome.

The concept of misophonia is gradually gaining recognition. In recently published prestigious Texbook of Tinnitus misophonia is mentioned numerous times through the book and is discussed in detail in three chapters (Baguley,

D.M., McFerran, D.J. Hyperacusis and Disorders of Loudness Perception.

Ch 3: 13-23; Moller, A.A., Misophonia, Phonophobia, and"Exploding Head"

Syndrome. Ch4: 25-27, 2010; Jastreboff, P.J.Tinnitus Retraining Therapy. Ch 73:575-562. In: Texbook of Tinnitus. A.Moller, T Kleinjung, B. Langguth, D. DeRidder editors, Springer, 2010). The main points toremember:· Decreased sound tolerance accompany tinnitus insignificant proportion of cases (~60%) · Detailed

evaluation is necessary to diagnose the presence and extent of

hyperacusis and misophonia as while patients' reactions to sounds may

be the same, but treatments are distinctively different · Special protocols for misophonia are necessary · The use of ear level sound devices is

crucial in hyperacusis

patients · Misophonic patients commonly benefits from sound generators as well, but it is possible to treat misophonia without any devices · Significant

improvement is observed in nearly all cases with decreased sound

tolerance, but both hyperacusis and misophonia need to be treated

concurrently · In majority of cases it is possible to achieve the cure for both hyperacusis and misophonia · Treatment

of hyperacusis and misophonia increases effectiveness of tinnitus

treatment and in some cases is crucial for achieving tinnitus control.© 2012 http://www.chat-hyperacusis.net/post/Decreased-sound-tolerance-%28DST%29-hyperacusis-and-misophonia-by-Dr.-Pawel-Jastreboff-5870424

[Guest guest]

Thanks for your post, . I too have read everything I can find on Dr

Jastreboff's work, and the music protocol you mention is the only one I've seen.

He refers here and in other places to there being 4 protocols, but I've never

found a description of the others. He also seems very insistent on misophonia

arising from some negative or stressful experience.

As you say, it makes sense to me that misophonia arising because sound causes

you pain (because you have hyperacusis) is not the same thing as misophonia that

arises during childhood for no apparent reason, even if the person's end

response might be similar. It also makes sense that a treatment that works for

one would not necessarily work for the other. I have read lots of old posts on

the Hyperacusis Network, and they seem very unwilling to consider that

possibility.

But if anyone knows how Dr Jastreboff treats the childhood-no apparent reason

type of misophonia that is specific for the characteristic types of trigger, or

better yet, has been helped by that treatment, I would be most interested to

know more.

Has anyone read his book on Tinnitis Retraining Therapy? I have been thinking of

ordering it to understand his model better. I think the most recent edition is

from 2004, so it wouldn't contain any protocols he has developed since then.

Liesa

>

> I have been trying to find out what Dr. Jastrebof's protocol is for the

> type if misophonia that we suffer from for some time, can't find much if

> any info on the internet.

[Guest guest]

http://books.google.com/books?id=weJtKjIYf3sC & printsec=frontcover & dq=%22Tinnitus+Retraining+Therapy%22 & hl=en & sa=X & ei=1FjJT-a9OdLy2gXZ6ZXaCw & ved=0CFUQ6AEwAQ#v=onepage & q=%22Tinnitus%20Retraining%20Therapy%22 & f=falseHi Liesa, I have not read the book, but you can see a preview of it on google books. I did a search on "eating" to see what would came up in the book and only came up with one sentence.http://www.ctv.ca/CTVNews/Health/20090713/misophonia_sounds_090713/Have you seen this article? there is a description of the music protocol. In part " Jastreboff says cognitive behavioural therapy may help people cope but

won't remove the problem itself. His method is to create positive

associations with troublesome sounds." (I'm assuming he means with the music protocol) I admit that I'm not an MD or a Psychologist, but I have done cognitive behavioral therapy as a patient. And my understanding of it was that CBT does indeed help with creating positive associations, (reconditioning of the subconscious limbic reactions) that would come under the "behavioral" part, not the "cognitive" part. Even if misophonia had resulted from a negative experience, I don't get the difference. Can anyone clear that up?Liesa, do you think his model for tinnitus could also bring some light to the non-sound related visual triggers? To: Soundsensitivity Sent: Friday, June 1, 2012 6:46 PM Subject: Re: Dr. Jastrebof's Misophonia Protocol?

Thanks for your post, . I too have read everything I can find on Dr Jastreboff's work, and the music protocol you mention is the only one I've seen. He refers here and in other places to there being 4 protocols, but I've never found a description of the others. He also seems very insistent on misophonia arising from some negative or stressful experience.

As you say, it makes sense to me that misophonia arising because sound causes you pain (because you have hyperacusis) is not the same thing as misophonia that arises during childhood for no apparent reason, even if the person's end response might be similar. It also makes sense that a treatment that works for one would not necessarily work for the other. I have read lots of old posts on the Hyperacusis Network, and they seem very unwilling to consider that possibility.

But if anyone knows how Dr Jastreboff treats the childhood-no apparent reason type of misophonia that is specific for the characteristic types of trigger, or better yet, has been helped by that treatment, I would be most interested to know more.

Has anyone read his book on Tinnitis Retraining Therapy? I have been thinking of ordering it to understand his model better. I think the most recent edition is from 2004, so it wouldn't contain any protocols he has developed since then.

Liesa

>

> I have been trying to find out what Dr. Jastrebof's protocol is for the

> type if misophonia that we suffer from for some time, can't find much if

> any info on the internet.

[Guest guest]

Actually, being in a room with noise like a restaurant often helps not

hearing noises like chewing. A low hum of background noise is fine but

I've had to plug my ears with any loud music or high voices since I've

been small. My right ear is especially sensitive and I try to put my

finger in my ear under my hair and hope no one sees (like in a meeting

with a loud talker to my right). I do wear headphone with music or the

radio sometimes. Some of the symptoms that seem like hyperacusis -

fluttering in my ears - has gotten a little better as I've gotten older.

When I was younger I used to consciously relax my ears to try to stop

it.

I have a decreased tolerance for any chewing, smacking, sometimes typing,

phones vibrating, etc. etc. High, monotone voices are really bad. I'm

able to usually plug the ear closest to the sound or put on headphones.

Sometime I leave. But, I try not to make a big deal about it. Funny thing

is I'm doing quality assurance testing for an audio product and I'm

hearing problems that no one else hears. There is a time when it's a good

thing to have acute hearing. Unfortunately, right now I only have

high-deductible medical coverage so no testing would be covered.

At 04:28 PM 6/1/2012, you wrote:

Hi , Sorry to hear about your hyperacusis, squealing in your ears

sounds like it could be tinnitus too? Have you made an appointment to

have your ears checked, there are treatments available.

Dr. who has been collecting the data on us, I am preety sure

mentioned that the majority do not have hyperacusis or tinnitus. Actually

many of us prefer to be in loud places where the small noises are drowned

out, unlike those with hyperacusis. There are people who post here that

do have hyperacusis and/or tinnitus and our type of misophonia, but if

memory serves most commonly those posting here do not have other auditory

problems.

Sorry if you already said but what kind of sounds do you have a decreased

tolerance for?

To: " Soundsensitivity "

<Soundsensitivity >

Sent: Friday, June 1, 2012 3:06 PM

Subject: Re: Dr. Jastrebof's Misophonia

Protocol?

I'm new to this and was curious about this comment " our type of

misophonia who DO NOT have hyperacusis/tinnitus " . I only realized a

couple of days ago that I have hyperacusis. Do most people on this list

not have this? Is it uncommon to have everything? I never realized as a

kid that everyone didn't have all this weird stuff going on in their

ears. I thought having squealing in your ears was normal until I was an

adult.

To: Soundsensitivity

Sent: Friday, June 1, 2012 12:42 PM

Subject: Dr. Jastrebof's Misophonia

Protocol?

I have been trying to

find out what Dr. Jastrebof's protocol is for the type if misophonia that

we suffer from for some time, can't find much if any info on the

internet/

I have in the past

asked questions from members over at the Hyperacusis Network whom are

very well read on Dr. Jastreboff's publications. I asked for a few

specifics of these protocols specifically for patients with our type of

misophonia who DO NOT have hyperacusis/tinnitus. Dr. Jastrebof as I

understand it specializes mostly in treating people with

tinnitus/hyperacusis. The questions I asked were mostly evaded. I have

not found anyone over there or in the archives who were treated by Dr.

Jastrebof for our very specific type of misophonia. It would be great to

hear from some of his patients.

The only thing that I could get out of them is that he recommends this

" music protocol " in which you pair the offensive sound with

pleasant music over a period of weeks increasing the volume of the music

gradually. This is reconditioning our autonomic and limbic system (which

learns thru experience only) This experience of pairing the positive

emotion from enjoying the music, with the trigger sound supposedly

results in the negative associations with the trigger to weaken and maybe

even become neutral. Psychology 101. Who here has not already tried the

music protocol??

If he has changed his

treatment protocol since, I know not, hard to tell from this article. Has

anybody heard if he has been refining the music protocol?

Personally I wouldn't

spend any money seeing him until I found some actual data that he has

indeed helped people with our type of misophonia and how he treats them.

If one has tinnitus/hyperacusis and the misophonia that occurs with those

conditions (that would be the conditioned kind like " ouch I hate

that noise because it hurts my ears), he is apparently the man to see, or

so I have heard.

Course I have no

medical knowledge or aptitude so it is quite possible in my quest for

information that I just didn't get it. Did anyone else get something

about his protocol from this article or from talking to H. Network people

that I didn't catch?. It seems that we are barely mentioned and its

mostly about the definition of the word misophonia?

Comments on the

article are welcome here. I wouldn't go discuss over where the article is

posted because two or three sharks swim in the water over there looking

to pick a fight, ;-) this will only create more negative associations

with misophonia, and who needs that.

Decreased

sound tolerance (DST): hyperacusis and misophonia

Pawel J. Jastreboff, Ph.D., Sc.D., M.B.A. and Margaret M.

Jastreboff, Ph.D.

Emory University School of Medicine & Jastreboff Hearing Disorders

Foundation, Inc.

(This text contains some information which was presented at the lecture

during AAA Annual meeting, Boston 2012)

Sounds of different pitch, loudness, spectral complexity, and duration

may be to some people pleasant, but to others neutral, the same sounds

can be unpleasant, uncomfortable, annoying or even hurtful to

others. There are many studies related to the effects of sound on

humans focused on psychological consequences, general health issues,

engineering challenges, development of new technologies, environmental

problems. Studies with the use of non-verbal digitized sounds showed that

when presented on a comfortable level, on the average they induce similar

emotional responses in people from different countries and

backgrounds. Nevertheless, there is a significant group of people

whose lives are significantly affected in the negative manner by the

sounds not significant to other people and who suffer due to decreased

tolerance to sound. Interestingly, it is not simply the loudness,

pitch, and duration of sound which cause a problem, but these factors are

most commonly considered when offering advice to patients. In the

case of sensitivity to louder sounds the most common advice is to use ear

protection and avoiding these sounds, which unfortunately frequently

leads to worsening of the problem. Moreover, patients' complaints are

frequently classified as exclusively psychological or behavioral problems

and treated accordingly to this diagnosis. It is not unusual that

patients' problems are simply ignored and there is no help offered.

Decreased sound tolerance may have profound impact on patients' lives as

it may restrain exposure to louder environment, prevent them from work,

reduce social interactions, negatively affect family life and, in extreme

cases, it may control the patients' life. Even milder severity DST

could affect quality of life by interfering everyday activities, e.g.,

driving car, shopping, going to restaurants, going to movies, attending

sport events, use of noisy tools, hair dryer, vacuum cleaner, lawn mower,

listening to music or TV.

Certain triggering factors for DSTare commonly reported by patients such

as: chronic exposure to sound, e.g., at work, school, explosion and

impulse noise, e.g., guns, fireworks; head injury, surgery of the head

(particularly involving ear); stress associated with an event / activity

involving sound, e.g., dental procedure, wedding, concert, participating

for first time in summer camp, eating in new, stressful surrounding,

cafeteria in new school or in college, sound of eating of a new

unfriendly person, sounds after moving to a new house or to

college. Some medical problems are linked to DST with tinnitus

being most common. Lyme disease, withdrawal from benzodiazepines

and tensor tympani syndrome, some surgical procedure, genetic disorder

( syndrome) and autism have been linked to DST as well.

There

is still lack of agreement regarding definition of decreased sound

tolerance. Decreased sound tolerance canbe defined as being present

when a subject exhibits negative reactions as a result of exposure to

sound that would not evoke the same reaction in an average

listener. Reported reactions include discomfort, distress,

annoyance, anxiety, variety of emotional reactions, pain, fear and other

negative responses. In the past two phenomena, hyperacusis and

phonophobia have been linked to DST: 1) Hyperacusis - when subject reacts

negatively to all " louder sounds " and 2) Phonophobia -

when subjectis " afraid of specific sound or one's own

voice. "

In

1990's when TRT was developed and used to help tinnitus patients, it

became obvious to us that many tinnitus patients and actually some people

without bothersome tinnitus as well, complain about discomfort caused by

sound. In our work we always pay big attention to patients'

description of their problems and through this we have been gradually

accumulating clinical knowledge on how to help patients in the most

effective manner. In 2000 it become evident that while about 60% of our

tinnitus patients exhibited DST, only a minority of them reacted to loud

sound disregarding their meaning and situation when they were exposed to

sound. The majority of patients reacted negatively only to specific

patterns of sound frequently (but not always) associated with

specific situations /places, e.g., neighbor playing music; sound of

eating, chewing, swallowing at home or at school; voices of specific

people, clicking sound, e.g., copy machine; running water; crackling

sound, e.g., paper, fireplace; high flying airplanes. At the same

time these patients could tolerate even high level of other sounds, e.g.,

loud music or noise of busy street. This category of patients did not fit

into a hyperacusis category. A relatively small group of patients

expressed fearful reactions to sound while others talk specifically about

different emotions, e.g., discomfort, dislike and they were strongly

opposed to their condition being described as phonophobia.

With

some hesitation regarding introducing a new term it appeared to develop a

word describing these complaints. We askedfor help from Guy Lee,

Don at St. 's College of Cambridge University, U.K., an expert in

Greek and Latin literature, to provide a list of pre- and postfixes which

would convey a negative reaction/attitude to something. He sent us

about 20 different words, but none were perfect. Finally we decided

on the prefix " miso " meaning " hate " in Greek and we

proposed the new term, misophonia, to describe this subtype of DST.

To avoid word " hate, " which is very powerful and has very

strong negative meaning, we used in writing or lectures a

" diluted/milder " wording " strong dislike " or even

simply " dislike. " Unfortunately, some professionals and

patients took the word literally and started to associate misophonia with

dislike of sound in general.

The

term was introduced into public domain in 2001 (Jastreboff, M.M.,

Jastreboff, P.J. Hyperacusis. Audiology On-line, 6-18-2001)

and in peer-reviewed journal in 2002 (Jastreboff, M.M. and Jastreboff,

P.J. Decreased sound tolerance and Tinnitus Retraining Therapy

(TRT). Australian andNew Zealand Journal of Audiology. 24(2):74-81,

2002). DST results from the summation of the effects of hyperacusis

and misophonia. The analysis of conditions when hyperacusis and

misophonia manifested themselves indicated different physiological

mechanisms of hyperacusis and misophonia. Therefore we have

proposed two types of definition for component of DST: behavioral and

based on presumed mechanisms involved in hyperacusis and

misophonia.

From

the behavioral point of view hyperacusis (occurring in about 25-30% of

tinnitus patients) is characterized by negative reaction to a sound which

depends only on its physical characteristics (i.e., spectrum, intensity).

Time course (coded in the phase of spectrum) and meaning of the sound are

irrelevant as well as the content in which a sound occurs.

Misophonia (occurring in about 60% of tinnitus patients) is characterized

by negative reaction to a sound with a specific pattern and

meaning. The physical characteristics of a sound (its spectrum,

intensity) are secondary. The reactions to sound depend on a

patients' past history and depends on non-auditory factors,

e.g.,patient's previous evaluation of the sound, the patient's

psychological profile, and the context in which the sound is

presented. Under this definition phonophobia is a special case of

misophonia when fear is a dominant emotion. Misophonia increases

awareness of external sounds and somato sounds (e.g., eating) which are

normally habituated and misophonia frequently induces tensor tympani

syndrome. Note that both hyperacusis and misophonia are evoking the same

emotional and autonomic (body) reactions and it is impossible to

discriminate between them on the basis of observed reactions.

In

mechanism-based definitions hyperacusis reflects abnormally strong

reactivity of the auditory pathways to sound (overamplification of

sound-evoked activity), which only in turn yields activation of the

limbic and autonomic nervous systems (which are responsible for emotional

and body reactions). The functional connections between the

auditory, the limbic and autonomic nervous systems are normal.

On the

other hand misophonia reflects abnormally strong reactions of the

autonomic and limbic systems resulting from enhanced functional

connections between the auditory, limbic and autonomic systems for

specific patterns of sound. In pure misophonia the auditory system

will function within the norm. Note that there is a clear analogy

between the mechanisms of tinnitus and misophonia - the difference is in

the initial signal, but the mechanisms which generate these reactions are

the same and involve conditioned reflexes.

Diagnosis of hyperacusis and misophonia is complex. Typically patients

combine and confuse hyperacusis and misophonia. Typically

audiological evaluation of DST involves measurement of Loudness

Discomfort Levels (LDL), i.e., measuring for pure tones of different

frequencies and the sound level when the patient reports strong

discomfort. For people who do not report problems with DST the

average value for all tested frequencies is about 100 dBHL. LDL,

however, are not sufficient for the diagnosis of hyperacusis or

misophonia. When a patient has hyperacusis the LDL show lower values

(average typically in 60-85 dB HL range), but low values alone are not

proving the presence of hyperacusis as they may be due to

misophonia! In misophonia both normal and low values are possible

(range of 20 to 120 dB HL). Therefore, a specific, detailed interview is

crucial for diagnosis. Comparison of an audiogram and LDL may,

however, provide an assessment of the extent of misophonia for some

patients and the method has been described in our 2002 paper.

In

practice hyperacusis and misophonia frequently occur together in varying

proportion, and in patientswith significant hyperacusis misophonia is

automatically created, as normal sounds will evoke discomfort, and

therefore create the conditioned reflexes. Once misophonia is

established, the reactions are governed by principles of conditioned

reflexes,e.g., reaction to the sound will be very fast and will occur

without need forthinking about the meaning of the sound, or belief that

the sound is bad for them.

Common

recommendations for treatment of decreased sound tolerance are not

necessary helpful and actually may create the increase of the problem,

e.g., " avoid sound " or " use ear protection "

because it will increase hyperacusis. Medications have no impact on

DST, but may have potential negative side effects. Use of sound therapies

based on desensitization may be helpful for hyperacusis, but have no or

limited effect on misophonia.

Evaluation and treatments of DST is included as an imperative and

obligatory element of Tinnitus Retraining Therapy(TRT). Certain

points are particularly important.

First, there is a

need to properly diagnose and differentiate hyperacusis and misophonia as

while patients' reactions to sounds may be the same, but treatments of

hyperacusis and misophonia are distinctively different.

Second, effective

treatment for hyperacusis is not helpful for misophonia!

Third, effective

treatment for misophonia is not particularly helpful for

hyperacusis.

Fourth, when both

hyperacusis and misophonia are initially present and hyperacusis is

successfully treated, typically misophonia increase and there is no

improvement observed at the behavioral level.

Hyperacusis is treated in TRT by desensitization with variety of sounds

combined with specific counseling aimed at DST. In the case of

normal hearing ear level sound generators are recommended as a part of

the sound therapy. When hearing loss is present then combination

instruments are optimal and sound generators are not recommended. It is

especiallyimportant for hyperacusis patients to have an enriched sound

environment day and night, 24/7. This method is very effective and

in majority of cases it is possible to achieve the cure.

Treatment of misophonia with TRT is much more complex and takes longer

time. Misophonia should be treated simultaneously with hyperacusis

/tinnitus. In addition to specific counseling, patients are advised

to follow one of 4 categories of protocols which attempt to create an

association between variety of sounds with something positive.

Protocol (1) has been published in our 2002 paper. These protocols

are further modified to fit the needs of individual patients and

typically more than one protocol is used. Note, that while misophonic

patients frequently benefit from the use of ear level sound generators,

they are not necessary for successful outcome of the treatment.

Sound generators alone without specific protocols for misophonia have

very limited usefulness. Duration of treatment is generally similar to

duration of tinnitus treatment, but success rate is very high and in

majority of cases it is possible to achieve a cure. Interestingly,

successful treatment of misophonia restores habituation of external

sounds and somato sounds and typically removes tensor tympani syndrome.

The

concept of misophonia is gradually gaining recognition. In recently

published prestigious Texbook of Tinnitus misophonia is mentioned

numerous times through the book and is discussed in detail in three

chapters

(Baguley, D.M., McFerran, D.J. Hyperacusis and Disorders of Loudness

Perception. Ch 3: 13-23; Moller, A.A., Misophonia, Phonophobia,

and " Exploding Head " Syndrome. Ch4: 25-27, 2010;

Jastreboff, P.J.Tinnitus Retraining Therapy. Ch 73:575-562.

In: Texbook of Tinnitus. A.Moller, T Kleinjung, B. Langguth, D. DeRidder

editors, Springer,

2010).

The main points toremember:

·

Decreased

sound tolerance accompany tinnitus insignificant proportion of cases

(~60%)

·

Detailed evaluation

is necessary to diagnose the presence and extent of hyperacusis and

misophonia as while patients' reactions to sounds may be the same, but

treatments are distinctively different

·

Special protocols for

misophonia are necessary

·

The use of ear level

sound devices is crucial in hyperacusis patients

·

Misophonic patients

commonly benefits from sound generators as well, but it is possible to

treat misophonia without any devices

· Significant

improvement is observed in nearly all cases with decreased sound

tolerance, but both hyperacusis and misophonia need to be treated

concurrently

·

In majority of cases

it is possible to achieve the cure for both hyperacusis and misophonia

·

Treatment of

hyperacusis and misophonia increases effectiveness of tinnitus treatment

and in some cases is crucial for achieving tinnitus control.

© 2012

http://www.chat-hyperacusis.net/post/Decreased-sound-tolerance-%28DST%29-hyperacusis-and-misophonia-by-Dr.-Pawel-Jastreboff-5870424

[Guest guest]

Thanks for the links. This is the description of the music protocol from the

news article:

" Treatment takes at least nine months, but Jastreboff claims about 90 per cent

of his misophonia patients find success. He asks them to listen attentively to

music they like at a comfortable volume while also listening to an irritating

sound.

Patients mix the pleasant and unpleasant sounds for 20 to 40 minutes once or

twice a day, for three weeks. Each week, the patient sets the volume of the

music at a louder level. Then the cycle is repeated. "

I'd have thought you'd start with the pleasant sound loud to begin with to drown

out the horrible sound, then gradually increase the amount of horrible sound in

the mix as you develop some ability to ignore small doses of it (assuming you

do). The way he describes it, I don't think I could do it for 20-40 seconds, let

alone 20-40 minutes!

I'm sure we've all tried to distract ourselves with a more pleasant sound

without having any impact on the reaction to a trigger sound. Last summer I was

outside a lot painting the house, and spent many hours trying to distract myself

from the neighbour's barking dog with my iPod (over earplugs). I could still

hear the dog, I liked the music, but I still hate dog barking. That dog in

particular!

Maybe there's something in the " attentiveness " to the music. Maybe it's because

you're supposed to consciously move your attention past the trigger onto the

music, and try to stay focussed on the music, so you learn to get past the

annoying sound. But he seems to be claiming this is to remove the negative

association you supposedly have with the sound and create a positive association

- that part seems unrealistic.

What do others think of this protocol?

Liesa

>

>

http://books.google.com/books?id=weJtKjIYf3sC & printsec=frontcover & dq=%22Tinnitus\

+Retraining+Therapy%22 & hl=en & sa=X & ei=1FjJT-a9OdLy2gXZ6ZXaCw & ved=0CFUQ6AEwAQ#v=on\

epage & q=%22Tinnitus%20Retraining%20Therapy%22 & f=false

>

> Hi Liesa, I have not read the book, but you can see a preview of it on google

books. I did a search on " eating " to see what would came up in the book and only

came up with one sentence.

>

>

> http://www.ctv.ca/CTVNews/Health/20090713/misophonia_sounds_090713/

>

> Have you seen this article? there is a description of the music protocol.

[Guest guest]

"I'd have thought you'd start with the pleasant sound loud to begin with

to drown out the horrible sound, then gradually increase the amount of

horrible sound in the mix as you develop some ability to ignore small

doses of it (assuming you do)."Yeah, that makes no sense that his protocol involves setting the music at higher levels gradually. I hadn't thought of increasing amount of horrible sound, maybe because I haven't been able to get to point of ignoring small dose.Or why doesn't he suggest lowering the sound of the music gradually. Seems to be this protocol is for people who have misophonia related to hyperacusis. There was someone over at the hyperacusis site who after getting hyperacusis developed an aversion to saliva sounds. Perhaps that is the kind of patient that his misophonia protocol helps?I have been using a waterfall sound track on my ipod that I just love, instantly relaxing. I wear it a lot when I am around trigger sounds, I can still hear the trigger sounds. So I am mixing positive and negative associations, have been doing so for months, it helps me cope immensely. But has

not resulted in any changes in the weakening of the negative reaction to the trigger sound for me unfortunately.Not sure about whether it's about attentiveness to the music, that has not been a very effective distraction technique for me personally. Not that I am saying that techniques to shift attention wouldn't be helpful. Personally I think relaxation might be more important, but I don't have to tell anyone here how difficult that is.I agree that creating a positive association with the offending sound is unrealistic. It would make more sense anyway to work on creating a neutral association with the sound so that our limbic system designates it as unimportant and therefore to be filtered out from our consciousness. To: Soundsensitivity Sent: Friday, June 1, 2012 11:27 PM Subject: Re: Dr. Jastrebof's Misophonia Protocol?

Thanks for the links. This is the description of the music protocol from the news article:

"Treatment takes at least nine months, but Jastreboff claims about 90 per cent of his misophonia patients find success. He asks them to listen attentively to music they like at a comfortable volume while also listening to an irritating sound.

Patients mix the pleasant and unpleasant sounds for 20 to 40 minutes once or twice a day, for three weeks. Each week, the patient sets the volume of the music at a louder level. Then the cycle is repeated."

I'd have thought you'd start with the pleasant sound loud to begin with to drown out the horrible sound, then gradually increase the amount of horrible sound in the mix as you develop some ability to ignore small doses of it (assuming you do). The way he describes it, I don't think I could do it for 20-40 seconds, let alone 20-40 minutes!

I'm sure we've all tried to distract ourselves with a more pleasant sound without having any impact on the reaction to a trigger sound. Last summer I was outside a lot painting the house, and spent many hours trying to distract myself from the neighbour's barking dog with my iPod (over earplugs). I could still hear the dog, I liked the music, but I still hate dog barking. That dog in particular!

Maybe there's something in the "attentiveness" to the music. Maybe it's because you're supposed to consciously move your attention past the trigger onto the music, and try to stay focussed on the music, so you learn to get past the annoying sound. But he seems to be claiming this is to remove the negative association you supposedly have with the sound and create a positive association - that part seems unrealistic.

What do others think of this protocol?

Liesa

>

> http://books.google.com/books?id=weJtKjIYf3sC & printsec=frontcover & dq=%22Tinnitus+Retraining+Therapy%22 & hl=en & sa=X & ei=1FjJT-a9OdLy2gXZ6ZXaCw & ved=0CFUQ6AEwAQ#v=onepage & q=%22Tinnitus%20Retraining%20Therapy%22 & f=false

>

> Hi Liesa, I have not read the book, but you can see a preview of it on google books. I did a search on "eating" to see what would came up in the book and only came up with one sentence.

>

>

> http://www.ctv.ca/CTVNews/Health/20090713/misophonia_sounds_090713/

>

> Have you seen this article? there is a description of the music protocol.

[Guest guest]

It does sound like you have the type of misophonia talked about here as well as some other auditory conditions. Not that I am diagnosing you, I have no qualifications to do so. I understand about not being able to go to the doctor because of a high deductible, I have the same problem. If I gave up paying for my health insurance, I would actually have some money to go see a doctor!Here is a link to Dr. J's site with links of resources for reading up on hyperacusis, hope that is helpful to your learning more about your audiological problems http://www.tinnitus-audiology.com/resources.htmlFrom: Shiffrin To: Soundsensitivity Sent: Friday, June 1, 2012 10:55 PM Subject: Re: Dr. Jastrebof's Misophonia Protocol?

Actually, being in a room with noise like a restaurant often helps not

hearing noises like chewing. A low hum of background noise is fine but

I've had to plug my ears with any loud music or high voices since I've

been small. My right ear is especially sensitive and I try to put my

finger in my ear under my hair and hope no one sees (like in a meeting

with a loud talker to my right). I do wear headphone with music or the

radio sometimes. Some of the symptoms that seem like hyperacusis -

fluttering in my ears - has gotten a little better as I've gotten older.

When I was younger I used to consciously relax my ears to try to stop

it.

I have a decreased tolerance for any chewing, smacking, sometimes typing,

phones vibrating, etc. etc. High, monotone voices are really bad. I'm

able to usually plug the ear closest to the sound or put on headphones.

Sometime I leave. But, I try not to make a big deal about it. Funny thing

is I'm doing quality assurance testing for an audio product and I'm

hearing problems that no one else hears. There is a time when it's a good

thing to have acute hearing. Unfortunately, right now I only have

high-deductible medical coverage so no testing would be covered.

At 04:28 PM 6/1/2012, you wrote:

Hi , Sorry to hear about your hyperacusis, squealing in your ears

sounds like it could be tinnitus too? Have you made an appointment to

have your ears checked, there are treatments available.

Dr. who has been collecting the data on us, I am preety sure

mentioned that the majority do not have hyperacusis or tinnitus. Actually

many of us prefer to be in loud places where the small noises are drowned

out, unlike those with hyperacusis. There are people who post here that

do have hyperacusis and/or tinnitus and our type of misophonia, but if

memory serves most commonly those posting here do not have other auditory

problems.

Sorry if you already said but what kind of sounds do you have a decreased

tolerance for?

To: "Soundsensitivity "

<Soundsensitivity >

Sent: Friday, June 1, 2012 3:06 PM

Subject: Re: Dr. Jastrebof's Misophonia

Protocol?

I'm new to this and was curious about this comment "our type of

misophonia who DO NOT have hyperacusis/tinnitus". I only realized a

couple of days ago that I have hyperacusis. Do most people on this list

not have this? Is it uncommon to have everything? I never realized as a

kid that everyone didn't have all this weird stuff going on in their

ears. I thought having squealing in your ears was normal until I was an

adult.

To: Soundsensitivity

Sent: Friday, June 1, 2012 12:42 PM

Subject: Dr. Jastrebof's Misophonia

Protocol?

I have been trying to

find out what Dr. Jastrebof's protocol is for the type if misophonia that

we suffer from for some time, can't find much if any info on the

internet/

I have in the past

asked questions from members over at the Hyperacusis Network whom are

very well read on Dr. Jastreboff's publications. I asked for a few

specifics of these protocols specifically for patients with our type of

misophonia who DO NOT have hyperacusis/tinnitus. Dr. Jastrebof as I

understand it specializes mostly in treating people with

tinnitus/hyperacusis. The questions I asked were mostly evaded. I have

not found anyone over there or in the archives who were treated by Dr.

Jastrebof for our very specific type of misophonia. It would be great to

hear from some of his patients.

The only thing that I could get out of them is that he recommends this

"music protocol" in which you pair the offensive sound with

pleasant music over a period of weeks increasing the volume of the music

gradually. This is reconditioning our autonomic and limbic system (which

learns thru experience only) This experience of pairing the positive

emotion from enjoying the music, with the trigger sound supposedly

results in the negative associations with the trigger to weaken and maybe

even become neutral. Psychology 101. Who here has not already tried the

music protocol??

If he has changed his

treatment protocol since, I know not, hard to tell from this article. Has

anybody heard if he has been refining the music protocol?

Personally I wouldn't

spend any money seeing him until I found some actual data that he has

indeed helped people with our type of misophonia and how he treats them.

If one has tinnitus/hyperacusis and the misophonia that occurs with those

conditions (that would be the conditioned kind like "ouch I hate

that noise because it hurts my ears), he is apparently the man to see, or

so I have heard.

Course I have no

medical knowledge or aptitude so it is quite possible in my quest for

information that I just didn't get it. Did anyone else get something

about his protocol from this article or from talking to H. Network people

that I didn't catch?. It seems that we are barely mentioned and its

mostly about the definition of the word misophonia?

Comments on the

article are welcome here. I wouldn't go discuss over where the article is

posted because two or three sharks swim in the water over there looking

to pick a fight, ;-) this will only create more negative associations

with misophonia, and who needs that.

Decreased

sound tolerance (DST): hyperacusis and misophonia

Pawel J. Jastreboff, Ph.D., Sc.D., M.B.A. and Margaret M.

Jastreboff, Ph.D.

Emory University School of Medicine & Jastreboff Hearing Disorders

Foundation, Inc.

(This text contains some information which was presented at the lecture

during AAA Annual meeting, Boston 2012)

Sounds of different pitch, loudness, spectral complexity, and duration

may be to some people pleasant, but to others neutral, the same sounds

can be unpleasant, uncomfortable, annoying or even hurtful to

others. There are many studies related to the effects of sound on

humans focused on psychological consequences, general health issues,

engineering challenges, development of new technologies, environmental

problems. Studies with the use of non-verbal digitized sounds showed that

when presented on a comfortable level, on the average they induce similar

emotional responses in people from different countries and

backgrounds. Nevertheless, there is a significant group of people

whose lives are significantly affected in the negative manner by the

sounds not significant to other people and who suffer due to decreased

tolerance to sound. Interestingly, it is not simply the loudness,

pitch, and duration of sound which cause a problem, but these factors are

most commonly considered when offering advice to patients. In the

case of sensitivity to louder sounds the most common advice is to use ear

protection and avoiding these sounds, which unfortunately frequently

leads to worsening of the problem. Moreover, patients' complaints are

frequently classified as exclusively psychological or behavioral problems

and treated accordingly to this diagnosis. It is not unusual that

patients' problems are simply ignored and there is no help offered.

Decreased sound tolerance may have profound impact on patients' lives as

it may restrain exposure to louder environment, prevent them from work,

reduce social interactions, negatively affect family life and, in extreme

cases, it may control the patients' life. Even milder severity DST

could affect quality of life by interfering everyday activities, e.g.,

driving car, shopping, going to restaurants, going to movies, attending

sport events, use of noisy tools, hair dryer, vacuum cleaner, lawn mower,

listening to music or TV.

Certain triggering factors for DSTare commonly reported by patients such

as: chronic exposure to sound, e.g., at work, school, explosion and

impulse noise, e.g., guns, fireworks; head injury, surgery of the head

(particularly involving ear); stress associated with an event / activity

involving sound, e.g., dental procedure, wedding, concert, participating

for first time in summer camp, eating in new, stressful surrounding,

cafeteria in new school or in college, sound of eating of a new

unfriendly person, sounds after moving to a new house or to

college. Some medical problems are linked to DST with tinnitus

being most common. Lyme disease, withdrawal from benzodiazepines

and tensor tympani syndrome, some surgical procedure, genetic disorder

( syndrome) and autism have been linked to DST as well.

There

is still lack of agreement regarding definition of decreased sound

tolerance. Decreased sound tolerance canbe defined as being present

when a subject exhibits negative reactions as a result of exposure to

sound that would not evoke the same reaction in an average

listener. Reported reactions include discomfort, distress,

annoyance, anxiety, variety of emotional reactions, pain, fear and other

negative responses. In the past two phenomena, hyperacusis and

phonophobia have been linked to DST: 1) Hyperacusis - when subject reacts

negatively to all "louder sounds" and 2) Phonophobia -

when subjectis "afraid of specific sound or one's own

voice."

In

1990's when TRT was developed and used to help tinnitus patients, it

became obvious to us that many tinnitus patients and actually some people

without bothersome tinnitus as well, complain about discomfort caused by

sound. In our work we always pay big attention to patients'

description of their problems and through this we have been gradually

accumulating clinical knowledge on how to help patients in the most

effective manner. In 2000 it become evident that while about 60% of our

tinnitus patients exhibited DST, only a minority of them reacted to loud

sound disregarding their meaning and situation when they were exposed to

sound. The majority of patients reacted negatively only to specific

patterns of sound frequently (but not always) associated with

specific situations /places, e.g., neighbor playing music; sound of

eating, chewing, swallowing at home or at school; voices of specific

people, clicking sound, e.g., copy machine; running water; crackling

sound, e.g., paper, fireplace; high flying airplanes. At the same

time these patients could tolerate even high level of other sounds, e.g.,

loud music or noise of busy street. This category of patients did not fit

into a hyperacusis category. A relatively small group of patients

expressed fearful reactions to sound while others talk specifically about

different emotions, e.g., discomfort, dislike and they were strongly

opposed to their condition being described as phonophobia.

With

some hesitation regarding introducing a new term it appeared to develop a

word describing these complaints. We askedfor help from Guy Lee,

Don at St. 's College of Cambridge University, U.K., an expert in

Greek and Latin literature, to provide a list of pre- and postfixes which

would convey a negative reaction/attitude to something. He sent us

about 20 different words, but none were perfect. Finally we decided

on the prefix"miso" meaning "hate" in Greek and we

proposed the new term, misophonia, to describe this subtype of DST.

To avoid word "hate," which is very powerful and has very

strong negative meaning, we used in writing or lectures a

"diluted/milder" wording "strong dislike" or even

simply "dislike." Unfortunately, some professionals and

patients took the word literally and started to associate misophonia with

dislike of sound in general.

The

term was introduced into public domain in 2001 (Jastreboff, M.M.,

Jastreboff, P.J. Hyperacusis. Audiology On-line, 6-18-2001)

and in peer-reviewed journal in 2002 (Jastreboff, M.M. and Jastreboff,

P.J. Decreased sound tolerance and Tinnitus Retraining Therapy

(TRT). Australian andNew Zealand Journal of Audiology. 24(2):74-81,

2002). DST results from the summation of the effects of hyperacusis

and misophonia. The analysis of conditions when hyperacusis and

misophonia manifested themselves indicated different physiological

mechanisms of hyperacusis and misophonia. Therefore we have

proposed two types of definition for component of DST: behavioral and

based on presumed mechanisms involved in hyperacusis and

misophonia.

From

the behavioral point of view hyperacusis (occurring in about 25-30% of

tinnitus patients) is characterized by negative reaction to a sound which

depends only on its physical characteristics (i.e., spectrum, intensity).

Time course (coded in the phase of spectrum) and meaning of the sound are

irrelevant as well as the content in which a sound occurs.

Misophonia (occurring in about 60% of tinnitus patients) is characterized

by negative reaction to a sound with a specific pattern and

meaning. The physical characteristics of a sound (its spectrum,

intensity) are secondary. The reactions to sound depend on a

patients' past history and depends on non-auditory factors,

e.g.,patient's previous evaluation of the sound, the patient's

psychological profile, and the context in which the sound is

presented. Under this definition phonophobia is a special case of

misophonia when fear is a dominant emotion. Misophonia increases

awareness of external sounds and somato sounds (e.g., eating) which are

normally habituated and misophonia frequently induces tensor tympani

syndrome. Note that both hyperacusis and misophonia are evoking the same

emotional and autonomic (body) reactions and it is impossible to

discriminate between them on the basis of observed reactions.

In

mechanism-based definitions hyperacusis reflects abnormally strong

reactivity of the auditory pathways to sound (overamplification of

sound-evoked activity), which only in turn yields activation of the

limbic and autonomic nervous systems (which are responsible for emotional

and body reactions). The functional connections between the

auditory, the limbic and autonomic nervous systems are normal.

On the

other hand misophonia reflects abnormally strong reactions of the

autonomic and limbic systems resulting from enhanced functional

connections between the auditory, limbic and autonomic systems for

specific patterns of sound. In pure misophonia the auditory system

will function within the norm. Note that there is a clear analogy

between the mechanisms of tinnitus and misophonia - the difference is in

the initial signal, but the mechanisms which generate these reactions are

the same and involve conditioned reflexes.

Diagnosis of hyperacusis and misophonia is complex. Typically patients

combine and confuse hyperacusis and misophonia. Typically

audiological evaluation of DST involves measurement of Loudness

Discomfort Levels (LDL), i.e., measuring for pure tones of different

frequencies and the sound level when the patient reports strong

discomfort. For people who do not report problems with DST the

average value for all tested frequencies is about 100 dBHL. LDL,

however, are not sufficient for the diagnosis of hyperacusis or

misophonia. When a patient has hyperacusis the LDL show lower values

(average typically in 60-85 dB HL range), but low values alone are not

proving the presence of hyperacusis as they may be due to

misophonia! In misophonia both normal and low values are possible

(range of 20 to 120 dB HL). Therefore, a specific, detailed interview is

crucial for diagnosis. Comparison of an audiogram and LDL may,

however, provide an assessment of the extent of misophonia for some

patients and the method has been described in our 2002 paper.

In

practice hyperacusis and misophonia frequently occur together in varying

proportion, and in patientswith significant hyperacusis misophonia is

automatically created, as normal sounds will evoke discomfort, and

therefore create the conditioned reflexes. Once misophonia is

established, the reactions are governed by principles of conditioned

reflexes,e.g., reaction to the sound will be very fast and will occur

without need forthinking about the meaning of the sound, or belief that

the sound is bad for them.

Common

recommendations for treatment of decreased sound tolerance are not

necessary helpful and actually may create the increase of the problem,

e.g., "avoid sound" or "use ear protection"

because it will increase hyperacusis. Medications have no impact on

DST, but may have potential negative side effects. Use of sound therapies

based on desensitization may be helpful for hyperacusis, but have no or

limited effect on misophonia.

Evaluation and treatments of DST is included as an imperative and

obligatory element of Tinnitus Retraining Therapy(TRT). Certain

points are particularly important.

First, there is a

need to properly diagnose and differentiate hyperacusis and misophonia as

while patients' reactions to sounds may be the same, but treatments of

hyperacusis and misophonia are distinctively different.

Second, effective

treatment for hyperacusis is not helpful for misophonia!

Third, effective

treatment for misophonia is not particularly helpful for

hyperacusis.

Fourth, when both

hyperacusis and misophonia are initially present and hyperacusis is

successfully treated, typically misophonia increase and there is no

improvement observed at the behavioral level.

Hyperacusis is treated in TRT by desensitization with variety of sounds

combined with specific counseling aimed at DST. In the case of

normal hearing ear level sound generators are recommended as a part of

the sound therapy. When hearing loss is present then combination

instruments are optimal and sound generators are not recommended. It is

especiallyimportant for hyperacusis patients to have an enriched sound

environment day and night, 24/7. This method is very effective and

in majority of cases it is possible to achieve the cure.

Treatment of misophonia with TRT is much more complex and takes longer

time. Misophonia should be treated simultaneously with hyperacusis

/tinnitus. In addition to specific counseling, patients are advised

to follow one of 4 categories of protocols which attempt to create an

association between variety of sounds with something positive.

Protocol (1) has been published in our 2002 paper. These protocols

are further modified to fit the needs of individual patients and

typically more than one protocol is used. Note, that while misophonic

patients frequently benefit from the use of ear level sound generators,

they are not necessary for successful outcome of the treatment.

Sound generators alone without specific protocols for misophonia have

very limited usefulness. Duration of treatment is generally similar to

duration of tinnitus treatment, but success rate is very high and in

majority of cases it is possible to achieve a cure. Interestingly,

successful treatment of misophonia restores habituation of external

sounds and somato sounds and typically removes tensor tympani syndrome.

The

concept of misophonia is gradually gaining recognition. In recently

published prestigious Texbook of Tinnitus misophonia is mentioned

numerous times through the book and is discussed in detail in three

chapters

(Baguley, D.M., McFerran, D.J. Hyperacusis and Disorders of Loudness

Perception. Ch 3: 13-23; Moller, A.A., Misophonia, Phonophobia,

and"Exploding Head" Syndrome. Ch4: 25-27, 2010;

Jastreboff, P.J.Tinnitus Retraining Therapy. Ch 73:575-562.

In: Texbook of Tinnitus. A.Moller, T Kleinjung, B. Langguth, D. DeRidder

editors, Springer,

2010).

The main points toremember:

·

Decreased

sound tolerance accompany tinnitus insignificant proportion of cases

(~60%)

·

Detailed evaluation

is necessary to diagnose the presence and extent of hyperacusis and

misophonia as while patients' reactions to sounds may be the same, but

treatments are distinctively different

·

Special protocols for

misophonia are necessary

·

The use of ear level

sound devices is crucial in hyperacusis patients

·

Misophonic patients

commonly benefits from sound generators as well, but it is possible to

treat misophonia without any devices

· Significant

improvement is observed in nearly all cases with decreased sound

tolerance, but both hyperacusis and misophonia need to be treated

concurrently

·

In majority of cases

it is possible to achieve the cure for both hyperacusis and misophonia

·

Treatment of

hyperacusis and misophonia increases effectiveness of tinnitus treatment

and in some cases is crucial for achieving tinnitus control.

© 2012

http://www.chat-hyperacusis.net/post/Decreased-sound-tolerance-%28DST%29-hyperacusis-and-misophonia-by-Dr.-Pawel-Jastreboff-5870424

_

[Guest guest]

Liesa,

I'm concerned that I would associate the music to my triggers instead of the

other way around. I wouldn't want to create aversions to sounds I like. One

never knows how the brain might react to such therapies. I did the Advanced

Brain Technologies listening program many times, and I just ended up hating

Baroque music.

Colleen

> >

> >

http://books.google.com/books?id=weJtKjIYf3sC & printsec=frontcover & dq=%22Tinnitus\

+Retraining+Therapy%22 & hl=en & sa=X & ei=1FjJT-a9OdLy2gXZ6ZXaCw & ved=0CFUQ6AEwAQ#v=on\

epage & q=%22Tinnitus%20Retraining%20Therapy%22 & f=false

> >

> > Hi Liesa, I have not read the book, but you can see a preview of it on

google books. I did a search on " eating " to see what would came up in the book

and only came up with one sentence.

> >

> >

> > http://www.ctv.ca/CTVNews/Health/20090713/misophonia_sounds_090713/

> >

> > Have you seen this article? there is a description of the music protocol.

>

[Guest guest]

I have found music to be very soothing, but I can't handle guitar twang...like

guitar solos in hard rock music.

>

> I have been trying to find out what Dr. Jastrebof's protocol is for the

> type if misophonia that we suffer from for some time, can't find much if

> any info on the internet/

>

>

> I have in the past asked questions from members over at the Hyperacusis

> Network whom are very well read on Dr. Jastreboff's publications. I

> asked for a few specifics of these protocols specifically for patients

> with our type of misophonia who DO NOT have hyperacusis/tinnitus. Dr.

> Jastrebof as I understand it specializes mostly in treating people with

> tinnitus/hyperacusis. The questions I asked were mostly evaded. I have

> not found anyone over there or in the archives who were treated by Dr.

> Jastrebof for our very specific type of misophonia. It would be great to

> hear from some of his patients.

>

>

>

>

>

> The only thing that I could get out of them is that he recommends this

> " music protocol " in which you pair the offensive sound with pleasant

> music over a period of weeks increasing the volume of the music

> gradually. This is reconditioning our autonomic and limbic system (which

> learns thru experience only) This experience of pairing the positive

> emotion from enjoying the music, with the trigger sound supposedly

> results in the negative associations with the trigger to weaken and

> maybe even become neutral. Psychology 101. Who here has not already

> tried the music protocol??

>

>

>

>

> If he has changed his treatment protocol since, I know not, hard to tell

> from this article. Has anybody heard if he has been refining the music

> protocol?

>

>

>

>

> Personally I wouldn't spend any money seeing him until I found some

> actual data that he has indeed helped people with our type of misophonia

> and how he treats them. If one has tinnitus/hyperacusis and the

> misophonia that occurs with those conditions (that would be the

> conditioned kind like " ouch I hate that noise because it hurts my ears),

> he is apparently the man to see, or so I have heard.

>

>

>

>

> Course I have no medical knowledge or aptitude so it is quite possible

> in my quest for information that I just didn't get it. Did anyone else

> get something about his protocol from this article or from talking to H.

> Network people that I didn't catch?. It seems that we are barely

> mentioned and its mostly about the definition of the word misophonia?

>

>

>

>

> Comments on the article are welcome here. I wouldn't go discuss over

> where the article is posted because two or three sharks swim in the

> water over there looking to pick a fight, ;-) this will only create more

> negative associations with misophonia, and who needs that.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Decreased sound tolerance (DST): hyperacusis and misophonia

>

>

>

> Pawel J. Jastreboff, Ph.D., Sc.D., M.B.A. and Margaret M. Jastreboff,

> Ph.D.

>

> Emory University School of Medicine & Jastreboff Hearing Disorders

> Foundation, Inc.

>

>

>

> (This text contains some information which was presented at the lecture

> during AAA Annual meeting, Boston 2012)

>

>

>

>

>

> Sounds of different pitch, loudness, spectral complexity,

> and duration may be to some people pleasant, but to others neutral, the

> same sounds can be unpleasant, uncomfortable, annoying or even hurtful

> to others. There are many studies related to the effects of sound on

> humans focused on psychological consequences, general health issues,

> engineering challenges, development of new technologies, environmental

> problems. Studies with the use of non-verbal digitized sounds showed

> that when presented on a comfortable level, on the average they induce

> similar emotional responses in people from different countries and

> backgrounds. Nevertheless, there is a significant group of people whose

> lives are significantly affected in the negative manner by the sounds

> not significant to other people and who suffer due to decreased

> tolerance to sound. Interestingly, it is not simply the loudness,

> pitch, and duration of sound which cause a problem, but these factors

> are most commonly considered when offering advice to patients. In the

> case of sensitivity to louder sounds the most common advice is to use

> ear protection and avoiding these sounds, which unfortunately frequently

> leads to worsening of the problem. Moreover, patients' complaints

> are frequently classified as exclusively psychological or behavioral

> problems and treated accordingly to this diagnosis. It is not unusual

> that patients' problems are simply ignored and there is no help

> offered.

>

>

>

> Decreased sound tolerance may have profound impact on

> patients' lives as it may restrain exposure to louder environment,

> prevent them from work, reduce social interactions, negatively affect

> family life and, in extreme cases, it may control the patients' life.

> Even milder severity DST could affect quality of life by interfering

> everyday activities, e.g., driving car, shopping, going to restaurants,

> going to movies, attending sport events, use of noisy tools, hair dryer,

> vacuum cleaner, lawn mower, listening to music or TV.

>

>

>

> Certain triggering factors for DSTare commonly reported by

> patients such as: chronic exposure to sound, e.g., at work, school,

> explosion and impulse noise, e.g., guns, fireworks; head injury, surgery

> of the head (particularly involving ear); stress associated with an

> event / activity involving sound, e.g., dental procedure, wedding,

> concert, participating for first time in summer camp, eating in new,

> stressful surrounding, cafeteria in new school or in college, sound of

> eating of a new unfriendly person, sounds after moving to a new house or

> to college. Some medical problems are linked to DST with tinnitus being

> most common. Lyme disease, withdrawal from benzodiazepines and tensor

> tympani syndrome, some surgical procedure, genetic disorder (

> syndrome) and autism have been linked to DST as well.

>

>

>

> There is still lack of agreement regarding definition of

> decreased sound tolerance. Decreased sound tolerance canbe defined as

> being present when a subject exhibits negative reactions as a result of

> exposure to sound that would not evoke the same reaction in an average

> listener. Reported reactions include discomfort, distress, annoyance,

> anxiety, variety of emotional reactions, pain, fear and other negative

> responses. In the past two phenomena, hyperacusis and phonophobia have

> been linked to DST: 1) Hyperacusis - when subject reacts negatively to

> all " louder sounds " and 2) Phonophobia - when subjectis " afraid of

> specific sound or one's own voice. "

>

>

>

> In 1990's when TRT was developed and used to help tinnitus

> patients, it became obvious to us that many tinnitus patients and

> actually some people without bothersome tinnitus as well, complain about

> discomfort caused by sound. In our work we always pay big attention to

> patients' description of their problems and through this we have

> been gradually accumulating clinical knowledge on how to help patients

> in the most effective manner. In 2000 it become evident that while about

> 60% of our tinnitus patients exhibited DST, only a minority of them

> reacted to loud sound disregarding their meaning and situation when they

> were exposed to sound. The majority of patients reacted negatively only

> to specific patterns of sound frequently (but not always) associated

> with specific situations /places, e.g., neighbor playing music; sound of

> eating, chewing, swallowing at home or at school; voices of specific

> people, clicking sound, e.g., copy machine; running water; crackling

> sound, e.g., paper, fireplace; high flying airplanes. At the same time

> these patients could tolerate even high level of other sounds, e.g.,

> loud music or noise of busy street. This category of patients did not

> fit into a hyperacusis category. A relatively small group of patients

> expressed fearful reactions to sound while others talk specifically

> about different emotions, e.g., discomfort, dislike and they were

> strongly opposed to their condition being described as phonophobia.

>

>

>

> With some hesitation regarding introducing a new term it

> appeared to develop a word describing these complaints. We askedfor

> help from Guy Lee, Don at St. 's College of Cambridge

> University, U.K., an expert in Greek and Latin literature, to provide a

> list of pre- and postfixes which would convey a negative

> reaction/attitude to something. He sent us about 20 different words,

> but none were perfect. Finally we decided on the prefix " miso "

> meaning " hate " in Greek and we proposed the new term,

> misophonia, to describe this subtype of DST. To avoid word

> " hate, " which is very powerful and has very strong negative

> meaning, we used in writing or lectures a " diluted/milder "

> wording " strong dislike " or even simply " dislike. "

> Unfortunately, some professionals and patients took the word literally

> and started to associate misophonia with dislike of sound in general.

>

>

>

> The term was introduced into public domain in 2001

> (Jastreboff, M.M., Jastreboff, P.J. Hyperacusis. Audiology On-line,

> 6-18-2001) and in peer-reviewed journal in 2002 (Jastreboff, M.M. and

> Jastreboff, P.J. Decreased sound tolerance and Tinnitus Retraining

> Therapy (TRT). Australian andNew Zealand Journal of Audiology.

> 24(2):74-81, 2002). DST results from the summation of the effects of

> hyperacusis and misophonia. The analysis of conditions when hyperacusis

> and misophonia manifested themselves indicated different physiological

> mechanisms of hyperacusis and misophonia. Therefore we have proposed

> two types of definition for component of DST: behavioral and based on

> presumed mechanisms involved in hyperacusis and misophonia.

>

>

>

> From the behavioral point of view hyperacusis (occurring in

> about 25-30% of tinnitus patients) is characterized by negative reaction

> to a sound which depends only on its physical characteristics (i.e.,

> spectrum, intensity). Time course (coded in the phase of spectrum) and

> meaning of the sound are irrelevant as well as the content in which a

> sound occurs.

>

>

>

> Misophonia (occurring in about 60% of tinnitus patients) is

> characterized by negative reaction to a sound with a specific pattern

> and meaning. The physical characteristics of a sound (its spectrum,

> intensity) are secondary. The reactions to sound depend on a patients'

> past history and depends on non-auditory factors, e.g.,patient's

> previous evaluation of the sound, the patient's psychological profile,

> and the context in which the sound is presented. Under this definition

> phonophobia is a special case of misophonia when fear is a dominant

> emotion. Misophonia increases awareness of external sounds and somato

> sounds (e.g., eating) which are normally habituated and misophonia

> frequently induces tensor tympani syndrome. Note that both hyperacusis

> and misophonia are evoking the same emotional and autonomic (body)

> reactions and it is impossible to discriminate between them on the basis

> of observed reactions.

>

>

>

> In mechanism-based definitions hyperacusis reflects

> abnormally strong reactivity of the auditory pathways to sound

> (overamplification of sound-evoked activity), which only in turn yields

> activation of the limbic and autonomic nervous systems (which are

> responsible for emotional and body reactions). The functional

> connections between the auditory, the limbic and autonomic nervous

> systems are normal.

>

>

>

> On the other hand misophonia reflects abnormally strong

> reactions of the autonomic and limbic systems resulting from enhanced

> functional connections between the auditory, limbic and autonomic

> systems for specific patterns of sound. In pure misophonia the auditory

> system will function within the norm. Note that there is a clear

> analogy between the mechanisms of tinnitus and misophonia - the

> difference is in the initial signal, but the mechanisms which generate

> these reactions are the same and involve conditioned reflexes.

>

>

>

> Diagnosis of hyperacusis and misophonia is complex.

> Typically patients combine and confuse hyperacusis and misophonia.

> Typically audiological evaluation of DST involves measurement of

> Loudness Discomfort Levels (LDL), i.e., measuring for pure tones of

> different frequencies and the sound level when the patient reports

> strong discomfort. For people who do not report problems with DST the

> average value for all tested frequencies is about 100 dBHL. LDL,

> however, are not sufficient for the diagnosis of hyperacusis or

> misophonia. When a patient has hyperacusis the LDL show lower values

> (average typically in 60-85 dB HL range), but low values alone are not

> proving the presence of hyperacusis as they may be due to misophonia!

> In misophonia both normal and low values are possible (range of 20 to

> 120 dB HL). Therefore, a specific, detailed interview is crucial for

> diagnosis. Comparison of an audiogram and LDL may, however, provide an

> assessment of the extent of misophonia for some patients and the method

> has been described in our 2002 paper.

>

>

>

> In practice hyperacusis and misophonia frequently occur

> together in varying proportion, and in patientswith significant

> hyperacusis misophonia is automatically created, as normal sounds will

> evoke discomfort, and therefore create the conditioned reflexes. Once

> misophonia is established, the reactions are governed by principles of

> conditioned reflexes,e.g., reaction to the sound will be very fast and

> will occur without need forthinking about the meaning of the sound, or

> belief that the sound is bad for them.

>

>

>

> Common recommendations for treatment of decreased sound

> tolerance are not necessary helpful and actually may create the increase

> of the problem, e.g., " avoid sound " or " use ear

> protection " because it will increase hyperacusis. Medications have

> no impact on DST, but may have potential negative side effects. Use of

> sound therapies based on desensitization may be helpful for hyperacusis,

> but have no or limited effect on misophonia.

>

>

>

> Evaluation and treatments of DST is included as an

> imperative and obligatory element of Tinnitus Retraining Therapy(TRT).

> Certain points are particularly important.

>

>

>

> First, there is a need to properly diagnose and differentiate

> hyperacusis and misophonia as while patients' reactions to sounds may be

> the same, but treatments of hyperacusis and misophonia are distinctively

> different.

>

>

>

> Second, effective treatment for hyperacusis is not helpful for

> misophonia!

>

>

>

> Third, effective treatment for misophonia is not particularly helpful

> for hyperacusis.

>

>

>

> Fourth, when both hyperacusis and misophonia are initially present and

> hyperacusis is successfully treated, typically misophonia increase and

> there is no improvement observed at the behavioral level.

>

>

>

> Hyperacusis is treated in TRT by desensitization with

> variety of sounds combined with specific counseling aimed at DST. In

> the case of normal hearing ear level sound generators are recommended as

> a part of the sound therapy. When hearing loss is present then

> combination instruments are optimal and sound generators are not

> recommended. It is especiallyimportant for hyperacusis patients to have

> an enriched sound environment day and night, 24/7. This method is very

> effective and in majority of cases it is possible to achieve the cure.

>

>

>

> Treatment of misophonia with TRT is much more complex and

> takes longer time. Misophonia should be treated simultaneously with

> hyperacusis /tinnitus. In addition to specific counseling, patients are

> advised to follow one of 4 categories of protocols which attempt to

> create an association between variety of sounds with something positive.

> Protocol (1) has been published in our 2002 paper. These protocols are

> further modified to fit the needs of individual patients and typically

> more than one protocol is used. Note, that while misophonic patients

> frequently benefit from the use of ear level sound generators, they are

> not necessary for successful outcome of the treatment. Sound generators

> alone without specific protocols for misophonia have very limited

> usefulness. Duration of treatment is generally similar to duration of

> tinnitus treatment, but success rate is very high and in majority of

> cases it is possible to achieve a cure. Interestingly, successful

> treatment of misophonia restores habituation of external sounds and

> somato sounds and typically removes tensor tympani syndrome.

>

>

>

> The concept of misophonia is gradually gaining recognition.

> In recently published prestigious Texbook of Tinnitus misophonia is

> mentioned numerous times through the book and is discussed in detail in

> three chapters (Baguley, D.M., McFerran, D.J. Hyperacusis and Disorders

> of Loudness Perception. Ch 3: 13-23; Moller, A.A., Misophonia,

> Phonophobia, and " Exploding Head " Syndrome. Ch4: 25-27, 2010;

> Jastreboff, P.J.Tinnitus Retraining Therapy. Ch 73:575-562. In:

> Texbook of Tinnitus. A.Moller, T Kleinjung, B. Langguth, D. DeRidder

> editors, Springer, 2010).

>

>

>

> The main points toremember:

>

>

>

>

> · Decreased sound tolerance accompany tinnitus insignificant

> proportion of cases (~60%)

>

> · Detailed evaluation is necessary to diagnose the presence

> and extent of hyperacusis and misophonia as while patients' reactions to

> sounds may be the same, but treatments are distinctively different

>

> · Special protocols for misophonia are necessary

>

> · The use of ear level sound devices is crucial in hyperacusis

> patients

>

> · Misophonic patients commonly benefits from sound generators

> as well, but it is possible to treat misophonia without any devices

>

> · Significant improvement is observed in nearly all cases with

> decreased sound tolerance, but both hyperacusis and misophonia need to

> be treated concurrently

>

> · In majority of cases it is possible to achieve the cure for

> both hyperacusis and misophonia

>

> · Treatment of hyperacusis and misophonia increases

> effectiveness of tinnitus treatment and in some cases is crucial for

> achieving tinnitus control.

>

> © 2012

>

>

>

>

>

> http://www.chat-hyperacusis.net/post/Decreased-sound-tolerance-%28DST%29\

> -hyperacusis-and-misophonia-by-Dr.-Pawel-Jastreboff-5870424

> <http://www.chat-hyperacusis.net/post/Decreased-sound-tolerance-%28DST%2\

> 9-hyperacusis-and-misophonia-by-Dr.-Pawel-Jastreboff-5870424>

>

[Guest guest]

Personally, I think his protocols don't apply to Misophonia the way we all have it, the way we all think of as Misophonia (which is why it was being called 4S, so as to separate ourselves from his version of Misophonia). First, if so many misophonia patients have been helped with his protocols, why haven't we heard from any of them? Please, if anyone has tried it and it's been successful at eliminating triggers (not just helping you cope), let us know.Second, for well over 30 years I have been listening to music I love while listening to the triggers, sometimes for hours on end for years and years. So then wouldn't I have begun to help myself in that vein? Nope, you know why, because Misophonia is not caused by a negative association to the sound, it's caused by my brain being mis-wired. It's quite simple frankly. His protocols do not work because they are based on a flawed assumption of the cause of Misophonia.Heidi

Thanks for the links. This is the description of the music protocol from the news article:

"Treatment takes at least nine months, but Jastreboff claims about 90 per cent of his misophonia patients find success. He asks them to listen attentively to music they like at a comfortable volume while also listening to an irritating sound.

Patients mix the pleasant and unpleasant sounds for 20 to 40 minutes once or twice a day, for three weeks. Each week, the patient sets the volume of the music at a louder level. Then the cycle is repeated."

I'd have thought you'd start with the pleasant sound loud to begin with to drown out the horrible sound, then gradually increase the amount of horrible sound in the mix as you develop some ability to ignore small doses of it (assuming you do). The way he describes it, I don't think I could do it for 20-40 seconds, let alone 20-40 minutes!

I'm sure we've all tried to distract ourselves with a more pleasant sound without having any impact on the reaction to a trigger sound. Last summer I was outside a lot painting the house, and spent many hours trying to distract myself from the neighbour's barking dog with my iPod (over earplugs). I could still hear the dog, I liked the music, but I still hate dog barking. That dog in particular!

Maybe there's something in the "attentiveness" to the music. Maybe it's because you're supposed to consciously move your attention past the trigger onto the music, and try to stay focussed on the music, so you learn to get past the annoying sound. But he seems to be claiming this is to remove the negative association you supposedly have with the sound and create a positive association - that part seems unrealistic.

What do others think of this protocol?

Liesa

>

> http://books.google.com/books?id=weJtKjIYf3sC & printsec=frontcover & dq=%22Tinnitus+Retraining+Therapy%22 & hl=en & sa=X & ei=1FjJT-a9OdLy2gXZ6ZXaCw & ved=0CFUQ6AEwAQ#v=onepage & q=%22Tinnitus%20Retraining%20Therapy%22 & f=false

>

> Hi Liesa, I have not read the book, but you can see a preview of it on google books. I did a search on "eating" to see what would came up in the book and only came up with one sentence.

>

>

> http://www.ctv.ca/CTVNews/Health/20090713/misophonia_sounds_090713/

>

> Have you seen this article? there is a description of the music protocol. _,_._,___

Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

[Guest guest]

I couldn't agree more Heidi! It is beginning to look to me like a broader definition of this problem may yet be needed. After reading the posts here many people have multiple sensitivities, with sound being primary. But they usually go together. So often if one sense is overly sensitive, at least one other is as well. I was thinking of trying the association method for a while. Now I will not waste my time or sanity doing it. Thanks. Mis-wired sounds like a good way to describe the cause of this condition. At least at this point. In order to find a cure for any problem,it is necessary at the very least to understand the

cause. Someone with a deep understanding of how the human mind and body operates will be needed. The answer may already be out there. Pray for a cure!Mike To: Soundsensitivity Sent: Thursday, June 7, 2012 11:08 PM Subject: Re: Dr. Jastrebof's Misophonia

Protocol?

Personally, I think his protocols don't apply to Misophonia the way we all have it, the way we all think of as Misophonia (which is why it was being called 4S, so as to separate ourselves from his version of Misophonia). First, if so many misophonia patients have been helped with his protocols, why haven't we heard from any of them? Please, if anyone has tried it and it's been successful at eliminating triggers (not just helping you cope), let us know.Second, for well over 30 years I have been listening to music I love while listening to the triggers, sometimes for hours on end for years and years. So then wouldn't I have begun to help myself in that vein? Nope, you know why, because Misophonia is not caused by a negative association to the sound, it's caused by my brain being mis-wired. It's quite simple frankly. His protocols do not work because they are

based on a flawed assumption of the cause of Misophonia.Heidi

Thanks for the links. This is the description of the music protocol from the news article:

"Treatment takes at least nine months, but Jastreboff claims about 90 per cent of his misophonia patients find success. He asks them to listen attentively to music they like at a comfortable volume while also listening to an irritating sound.

Patients mix the pleasant and unpleasant sounds for 20 to 40 minutes once or twice a day, for three weeks. Each week, the patient sets the volume of the music at a louder level. Then the cycle is repeated."

I'd have thought you'd start with the pleasant sound loud to begin with to drown out the horrible sound, then gradually increase the amount of horrible sound in the mix as you develop some ability to ignore small doses of it (assuming you do). The way he describes it, I don't think I could do it for 20-40 seconds, let alone 20-40 minutes!

I'm sure we've all tried to distract ourselves with a more pleasant sound without having any impact on the reaction to a trigger sound. Last summer I was outside a lot painting the house, and spent many hours trying to distract myself from the neighbour's barking dog with my iPod (over earplugs). I could still hear the dog, I liked the music, but I still hate dog barking. That dog in particular!

Maybe there's something in the "attentiveness" to the music. Maybe it's because you're supposed to consciously move your attention past the trigger onto the music, and try to stay focussed on the music, so you learn to get past the annoying sound. But he seems to be claiming this is to remove the negative association you supposedly have with the sound and create a positive association - that part seems unrealistic.

What do others think of this protocol?

Liesa

>

> http://books.google.com/books?id=weJtKjIYf3sC & printsec=frontcover & dq=%22Tinnitus+Retraining+Therapy%22 & hl=en & sa=X & ei=1FjJT-a9OdLy2gXZ6ZXaCw & ved=0CFUQ6AEwAQ#v=onepage & q=%22Tinnitus%20Retraining%20Therapy%22 & f=false

>

> Hi Liesa, I have not read the book, but you can see a preview of it on google books. I did a search on "eating" to see what would came up in the book and only came up with one sentence.

>

>

> http://www.ctv.ca/CTVNews/Health/20090713/misophonia_sounds_090713/

>

> Have you seen this article? there is a description of the music protocol. _,_._,___

Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

[Guest guest]

I've only been reading this list a couple of months, but have read a lot of

archives, both here and at the Hyperacusis Network. However, I haven't fully

worked out how the name misophonia supplanted 4S. How did it happen?

It's rather awkward now when the condition is getting some publicity, and there

are claims of being able to treat misophonia that are really talking about

something different. The Jastreboff article posted on the HN site is now on his

website as well: http://www.tinnitus-pjj.com/. I note that when he describes how

it starts, he doesn't mention anything resembling the accounts given by so many

people here, and I've not seen people here describing the triggering events he

lists. That really makes me think he's talking about different groups of people.

Liesa

>

> Personally, I think his protocols don't apply to Misophonia the way we all

have it, the way we all think of as Misophonia (which is why it was being called

4S, so as to separate ourselves from his version of Misophonia).

[Guest guest]

Well said Heidi.

I think what Jastreboff cannot grasp is that this is a reflex and not an

emotion. It's neuronally reflexive. If there was a split second between

stimulus and response (emotive vs neurological), we'd be able to widen it and

eventually come to terms with whatever makes us feel bad. There are so many of

us who have had years of psychotherapy (because we all thought it was a psych

issue) and the 4S didn't budge. Yes we are better able to manage our lives, but

the torture continues. Did ALL of us have bad therapists? And I hear you - no

one has come forward as a success story from TRT or any other Jastreboff method.

I agree we should consider separating ourselves from Misophonia in general. I

think the best name is Soft Sound Sensitivity Syndrome or 4S/Misophonia. I know

most/many of us also have visual triggers but I do believe the aural comes first

and elicits a stronger reflex. We are a subset of misophonia which is still

DSM-diagnosed as a subset of hyperacusis. (NOT " selective " s s s - - the

sounds are not selective nor did I select them. Rather they are " background " )

- I am currently researching several things including a genetic glitch

which alters the way severed neurons die. The current research is looking at

the genetic reason for them dying but I am looking at the genetics behind the

reason they stay alive.

I am not the only lay-researcher in our bunch. Stay hopeful!

To: Soundsensitivity

Lawrence wrote:

>

> I couldn't agree more Heidi! 

>

> It is beginning to look to me like a broader definition of this problem may

yet be needed. After reading the posts here many people have multiple

sensitivities, with sound being primary. 

> But they usually go together. So often if one sense is  overly sensitive, at

least one other is as well. 

> I was thinking of trying the association method for a while. Now I will not

waste my time or sanity doing it. Thanks. 

> Mis-wired sounds like a good way to describe the cause of this condition. At

least at this point. 

>

> In order to find a cure for any problem,it is necessary at the very least to

understand the cause. Someone with a deep understanding of how the human mind

and body operates will be needed. 

> The answer may already be out there. 

>

> Pray for a cure!

>

> Mike

>

>  

>  

>

>

> ________________________________

>

> To: Soundsensitivity

> Sent: Thursday, June 7, 2012 11:08 PM

> Subject: Re: Dr. Jastrebof's Misophonia Protocol?

>

>

>  

> Personally, I think his protocols don't apply to Misophonia the way we all

have it, the way we all think of as Misophonia (which is why it was being called

4S, so as to separate ourselves from his version of Misophonia).  

>

> First, if so many misophonia patients have been helped with his protocols, why

haven't we heard from any of them?  Please, if anyone has tried it and it's

been successful at eliminating triggers (not just helping you cope), let us

know.

>

> Second, for well over 30 years I have been listening to music I love while

listening to the triggers, sometimes for hours on end for years and years.  So

then wouldn't I have begun to help myself in that vein?  Nope, you know why,

because Misophonia is not caused by a negative association to the sound, it's

caused by my brain being mis-wired.  It's quite simple frankly.  His protocols

do not work because they are based on a flawed assumption of the cause of

Misophonia.

> Heidi

>

>

>

>

>

>  

> >Thanks for the links. This is the description of the music protocol from the

news article:

> >

> > " Treatment takes at least nine months, but Jastreboff claims about 90 per

cent of his misophonia patients find success. He asks them to listen attentively

to music they like at a comfortable volume while also listening to an irritating

sound.

> >

> >Patients mix the pleasant and unpleasant sounds for 20 to 40 minutes once or

twice a day, for three weeks. Each week, the patient sets the volume of the

music at a louder level. Then the cycle is repeated. "

> >

>

SNIPPED

[Guest guest]

Adah, I don't think I ever responded to your comment. Had to reread your post a few times. The neuron research sounds interesting! Hope it proves to be useful in some way. Totally agree that psychotherapy is useless in treating Misophonia, though there may be some life coping results from it and have had marginal results in that area over the years. My concern is that so many conditions that are similar to Miso are treated with life deadening drugs or questionable and basically ineffective treatments. Most don't find the true underlyingcauses of the problems so never really find a true cure. A true "cure" , in my opinion, must take into account

the fact that our spirit, mind, brain and body work together and have an effect on each other and separating any one element will not bring a full understanding of a problem like ours. If that makes any sense and again it is just my opinion. I too am a lay-researcher and to even go that far is a stretch. I always enjoy reading your posts.Mike To: Soundsensitivity Sent: Friday, June 8, 2012 10:21 AM Subject: Re: Dr. Jastrebof's Misophonia Protocol?

Well said Heidi.

I think what Jastreboff cannot grasp is that this is a reflex and not an emotion. It's neuronally reflexive. If there was a split second between stimulus and response (emotive vs neurological), we'd be able to widen it and eventually come to terms with whatever makes us feel bad. There are so many of us who have had years of psychotherapy (because we all thought it was a psych issue) and the 4S didn't budge. Yes we are better able to manage our lives, but the torture continues. Did ALL of us have bad therapists? And I hear you - no one has come forward as a success story from TRT or any other Jastreboff method.

I agree we should consider separating ourselves from Misophonia in general. I think the best name is Soft Sound Sensitivity Syndrome or 4S/Misophonia. I know most/many of us also have visual triggers but I do believe the aural comes first and elicits a stronger reflex. We are a subset of misophonia which is still DSM-diagnosed as a subset of hyperacusis. (NOT "selective" s s s - - the sounds are not selective nor did I select them. Rather they are "background")

- I am currently researching several things including a genetic glitch which alters the way severed neurons die. The current research is looking at the genetic reason for them dying but I am looking at the genetics behind the reason they stay alive.

I am not the only lay-researcher in our bunch. Stay hopeful!

To: Soundsensitivity

Lawrence wrote:

>

> I couldn't agree more Heidi!Â

>

> It is beginning to look to me like a broader definition of this problem may yet be needed. After reading the posts here many people have multiple sensitivities, with sound being primary.Â

> But they usually go together. So often if one sense is  overly sensitive, at least one other is as well.Â

> I was thinking of trying the association method for a while. Now I will not waste my time or sanity doing it. Thanks.Â

> Mis-wired sounds like a good way to describe the cause of this condition. At least at this point.Â

>

> In order to find a cure for any problem,it is necessary at the very least to understand the cause. Someone with a deep understanding of how the human mind and body operates will be needed.Â

> The answer may already be out there.Â

>

> Pray for a cure!

>

> Mike

>

> Â

> Â

>

>

> ________________________________

>

> To: Soundsensitivity

> Sent: Thursday, June 7, 2012 11:08 PM

> Subject: Re: Dr. Jastrebof's Misophonia Protocol?

>

>

> Â

> Personally, I think his protocols don't apply to Misophonia the way we all have it, the way we all think of as Misophonia (which is why it was being called 4S, so as to separate ourselves from his version of Misophonia). Â

>

> First, if so many misophonia patients have been helped with his protocols, why haven't we heard from any of them? Â Please, if anyone has tried it and it's been successful at eliminating triggers (not just helping you cope), let us know.

>

> Second, for well over 30 years I have been listening to music I love while listening to the triggers, sometimes for hours on end for years and years. Â So then wouldn't I have begun to help myself in that vein? Â Nope, you know why, because Misophonia is not caused by a negative association to the sound, it's caused by my brain being mis-wired. Â It's quite simple frankly. Â His protocols do not work because they are based on a flawed assumption of the cause of Misophonia.

> Heidi

>

>

>

>

>

> Â

> >Thanks for the links. This is the description of the music protocol from the news article:

> >

> >"Treatment takes at least nine months, but Jastreboff claims about 90 per cent of his misophonia patients find success. He asks them to listen attentively to music they like at a comfortable volume while also listening to an irritating sound.

> >

> >Patients mix the pleasant and unpleasant sounds for 20 to 40 minutes once or twice a day, for three weeks. Each week, the patient sets the volume of the music at a louder level. Then the cycle is repeated."

> >

>

SNIPPED