Dr. Jastrebof's Misophonia Protocol?

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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