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ResearchResearch Interview

Interview with Misophonia Researcher Dr. Kumar

by Sensory Diversity August 1, 2018
written by Sensory Diversity

A special thank you to Dr. Kumar for agreeing to this interview.

How did you become interested in researching Misophonia?

We did not know that much about misophonia until the year 2012, when we published a paper in which we measured brain responses to some of typical aversive sounds (such as chalk on blackboard). This paper got some attention from the press, and I was invited to speak on the BBC about our findings. After the interview, I got many emails asking if I included sounds such as eating and breathing in my study. Initially we were surprised as we thought these sounds are not ‘annoying’, or typically aversive. However, the emails kept coming, and we became intrigued. Professor Tim Griffiths (neurologist) is the leader of our lab, and he invited four misophonia subjects to his clinic and conducted a detailed interview with each of them. We were surprised by the homogeneity of the profile of symptoms described by the participants, and we decided to investigate misophonia further.

 

What have you found most surprising about Misophonia research?

I have been involved into misophonia research for more than five years now, and have met and spoken with hundreds of sufferers. I find it most surprising, and disappointing at the same time, that misophonia research hardly receives the attention it deserves from the scientific and clinical community. Considering the devastating effects misophonia has on peoples’ lives, more awareness is needed. The situation has improved in the past couple of years, but not enough.

 

Many aren’t aware how the research process works. How long did your study take?

From conception of the study to its publication, it took roughly 2 years to complete.

 

Could you summarize what the important findings of your study were? (as briefly/lengthy as you like)

The most important finding of our fMRI study was the hyper activation of a brain structure called anterior insula (AI) specifically in response to trigger sounds in subjects with misophonia. Now the AI is known to be involved in integrating sensations from within the organs of the body, and from the outside world. One interpretation of our data is that the AI triggers atypical responses in the body (which are interpreted as negative). This may lead to unfavorable emotions in response to trigger sounds.

The other important finding was that the AI was strongly connected to a network of brain areas called the default mode network (DMN) in misophonia subjects. The DMN is known to be involved in recalling memories of past experiences. This may suggest that in misophonia, past experiences with trigger sounds have a strong bearing on the current perception and reaction to trigger sounds.

 

For those that are less familiar with interoception, could you briefly explain what that is?

Interoception refers to the brain’s perception of the internal states of our bodies. Some people have greater interoceptive awareness, and may feel what is happening inside their body more than others. Other people may have less interoceptive awareness, and therefore will be less sensitive to happenings inside the body.

 

Could you explain the connection between interoception and Misophonia that you found in your last study?

In consideration of the fundamental question of what emotions are, there are different theories. Some theories hold that emotions are simply the perception of internal state of the body, and nothing further. In the light of this definition, emotions and interoception are tightly linked. One can, therefore, argue that those with higher interoception, who are more sensitive to the internal changes in their bodies, may feel emotions more intensely than those who are less sensitive to changes in the internal states of their bodies. Interestingly, anterior insula (which as mentioned above is seen to be hyperactive in misophonics) is the key structure that is known to be involved in interoception. This raises the question: Do subjects with misophonia feel their internal bodies differently or, more generally? Do they have atypical interoception? Our paper suggested that this may be the case. We asked subjects to fill-in a questionnaire which asked questions related to the sensitivity of their internal sensations (e.g. degree of feeling their heart beating, internal tensions). We found that subjects with misophonia scored higher on these questionnaires (compared to controls) pointing to atypical interoception. Further research is needed to test the interception in misophonia and whether the atypical interoception is the cause or consequence of misophonia.

 

What’s next for your research on Misophonia?

My next experiment on misophonia involves identification and characterization of brain responses that can be measured on the scalp using electroencephalography (EEG) (or magnetoencephalography, MEG). As mentioned above, our previous fMRI study identified brain areas that are involved in mediating the emotional response to trigger sounds. The fMRI, however, has couple of limitations. It is expensive and it is also ‘slow’ (in the sense that it cannot measure moment-by-moment changes, or dynamics, of brain activity). The aim of the present study is determine the dynamics of the brain activity measured via the scalp using EEG. Also, since it is less expensive, EEG may useful as a measure in clinical practice.

 

How can those interested best help support your research?

The major problem in carrying forward research in misophonia is lack of funding. Misophonia is not officially recognized as a distinct disorder, and therefore funding agencies show little interest. This is where those interested in misophonia can support research. Any financial contribution is extremely helpful in order for us to continue the research.

For those interested in donating, you can learn more here.

 

Is there anything else you’d like to add/discuss?

Another finding in our study, not mentioned above, is that subjects with misophonia had differences in the structure of their brains in area that are involved in emotional control and regulation. However, seeing these differences does not tell us if they are a result of misophonia, or if they are causal in misophonia. It is, therefore, very important to direct research on structural brain changes in misophonia with consideration to development. In other words, it is important to study children and adolescents with misophonia, as well as adults.

 

Those interested in reading about Dr. Kumar’s most-recent misophonia study, can read more here.

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August 1, 2018 0 comments
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CopingInterviews

Audiologists’ Q&A on Misophonia with Jenna Pellicori

by Sensory Diversity July 22, 2018
written by Sensory Diversity

Join us on January 28th at 7:00 PM EST for a Workshop “Misophonia and How It Relates To Other Disorders”. $75. Featuring Dr. Jenna Pellicori and Dr. Jennifer Jo Brout.

https://misophoniaeducation.com/product/workshop-how-misophonia-relates-to-other-disorders/

 


Interview with Dr. Jenna Pellicori, Au.D. CCC-A

What does an audiologist do?

Audiologists are specialized healthcare professionals who identify, diagnose, and provide evidence-based treatment for hearing, balance, and other auditory disorders. Audiologists have a deep understanding of hearing, the auditory system, and acoustic properties of sound.

What help do you believe audiologists can offer for those suffering with Misophonia, especially (especially considering the lack of treatment and research available)?

Our primary goal is to differentiate Misophonia from other auditory or hearing-based disorders such as Tinnitus (ringing in the ears) or Hyperacusis (heightened sensitivity to sounds). It is important as audiologists that we are able to come to a differential diagnosis in order to provide the most appropriate intervention or management strategies for our patients.

Audiologists can also provide recommendations for sound therapy to help mask the trigger sounds and recommend tools that may be useful for the patient, such as noise-cancelling headphones or sound generators. Part of our role as audiologists also entails gathering clinical evidence in order to inform more formalized research.

How would you approach a patient with Misophonia? Do you recommend multidisciplinary specialists (a psychologist/psychiatrist, etc.)?

There is no cure for Misophonia and little research to support effective treatment. However, we are learning more and more each day. There are approaches and accommodations for which there is some reported success. However, there is no “quick-fix”, unfortunately. Coping skills and these specific approaches appear to take on a multidisciplinary approach. As Audiologists we often offer and encourage ways to modify sound in order to reduce or lessen the trigger response, and consequently the overall physiologic response.

Many sufferers of Misophonia wear earplugs around the clock – could you please recommend some “best practices” for earplug use?

Earplugs are designed to protect against loud or harmful sounds by blocking the ear canal so that sound vibrations are reduced by the time they reach the eardrum or inner ear. It’s important for users to determine if the earplugs they are using are disposable or reusable. As a general rule of thumb, most foam earplugs are meant for single use. You can also purchase custom ear molds from manufacturers that are often multi-use.

In regards to best practices for earplug use, here are a couple of helpful tips:

  1. Clean or discard earplugs – you should clean custom or pre-molded earplugs regularly and discard of single-use earplugs. If you do not clean the earplugs or continue to use single use earplugs then you can introduce dirt or bacteria into the ear canal which can cause infections, hearing loss, and ear pain.
  2. Your doctor should check for excessive earwax – if you are using earplugs or ear molds on a frequent basis, you should have your primary doctor occasionally check your ears for excessive cerumen (“ear wax”). A little bit of earwax is a good thing because it protects the ears from foreign objects, harmful bacteria, and it lubricates the ear canals. However, using earplugs too often can cause earwax build-up resulting in ear pain, temporary hearing loss, muffled hearing, tinnitus, unpleasant odors, and aural fullness. Excessive earwax can also deform or misshapen earplugs overtime, making them less efficient and altering their overall efficiency.
  3. Try a lubricant if the molds are drying out or irritating your ears – Oto-ease is a sterile and water soluble lubricant that can help guide ear molds effortlessly into the ears. It ultimately helps with ease of insertion. It is especially helpful for custom molds, which are tight fitting or extend deeply into the canal.
  4. Do your research – our ears and hearing are valuable, so before you go sticking “things” in your ears, you should do a little bit of self-education and research. Some individuals are allergic to certain types of ear mold materials, in which case they may benefit from medical grade silicone custom ear molds or an alternative material. In addition, earplugs often display a NRR (Noise Reduction Rating) or offer a variety of “acoustic filter” options.

NRR values provide insight into how efficient the earplugs are at reducing noise in decibels (a degree of loudness) or filtering out certain sounds while maintaining the clarity and quality of the auditory signal. As a general rule of thumb – higher NRR values are associated with greater levels of noise reduction. The highest NRR rating for earplugs is 33 but it is important to note that these ratings are not as straightforward as one would think… this does not mean that there is a 33 dB noise-reduction! That is why it is important to self-educate. You can learn more at The National Institute for Occupational Safety and Health, which will further clarify ratings and their potential for noise reduction.

Is using earplugs regularly dangerous? Or, do earplugs protect the ears in case of other damage?

I don’t want to be the bearer of bad news but wearing earplugs too frequently or for extended periods of time can actually heighten auditory sensitivity. Earplugs and noise-cancelling headphones are fantastic when they are used in the right way. If an individual feels that they need to block or mask out sounds for a prolonged period of time, then they should be encouraged to play environmental sounds, white noise, or music, in order to provide continual stimulation to the auditory system and prevent deprivation or heightened auditory sensitivity.

How often should one “throw out” their earplugs, and do you have any specialized earplugs that you would recommend? Is silicone better than foam? Is there a drawback to one or either?

This question depends on whether you are currently using single-use or multi-use earplugs. Most foam earplugs are meant for single-use use and have a short life span. It is recommended you discard of foam earplugs on a daily basis unless otherwise specified.

When used appropriately foam earplugs are generally considered safe for our ears. However, using foam earplugs more than directed can lead to bacteria in the ears resulting in infection, and also lessen the efficiency of the overall noise reduction properties. You also want to refrain from pushing foam earplugs too far into the ear canal, which can result in pain and discomfort.

With proper handling, custom ear molds will often last as long as 3-5 years. Custom silicone ear molds are often preferred and recommended for individuals who utilize ear molds on a more frequent basis.

It is hard to recommend specialized earplugs because they make earplugs and custom molds for a variety of reasons. Many of these earplugs and molds have different noise reduction ratings and/or acoustic filters depending on the patient’s unique needs and desire. A good starting point would be to look into the following manufacturers: Westone, Etymotic Research, and Mirosonic. These manufacturers are well known for their custom products. You can also consult with an audiologist or hearing healthcare professional in your area for additional information or advice.

How do Misophonia sufferers avoid damaging their ears when actively using noise generators or earplugs?

Listening to loud sounds for extended periods of time, can causes temporary and permanent issues such as tinnitus and noise-induced hearing loss. As a general rule of thumb, you do not want noise levels to exceed 85 dB for more than 8 hours at a time as this can put you at risk for hearing loss. As the intensity level exceeds 85 dB the exposure time decreases. You can learn more about protecting your hearing against loud noise exposure at The National Institute for Occupational Safety and Health.

On the ear-level sound generators are becoming a popular option for patients with Misophonia. These devices look like small hearing aids but are designed to provide access to pleasant or neutral auditory stimuli such as environmental sounds, white noise, pink noise, fractal tones, and music to help mask out all or part of the “trigger” sound. This is a discreet option that is worn on the ear and allows the patient to have access to “maskers” or “sound” at any point in the day.

As audiologists, we want to leave your ear as open as possible, and not plug them up, so you can still engage in conversations while attempting to mask out the aversive stimulus. We try to preserve as much of the speech intelligibility index as possible for our patients, so that they can participate in social interactions and do not feel the need to isolate themselves. Most on the ear level sound generators are programmed to have “maximum output levels”, which are designed to limit the output of the device, so you do not damage your residual or natural hearing.

What are the possible negative effects that can happen for sufferers that frequently wear headphones? Do you believe this could be making their ears more sensitive?

Hearing protection is very important in preventing damage to our cochlea, the organ of hearing, when used appropriately. However, there is a great deal of research that does show overprotecting your ears by wearing earplugs or noise-cancelling headphones too frequently can result in auditory hypersensitivity or exacerbate hyperacusis. This has not been specifically researched in patients with Misophonia. However, because both misophonia and hyperacusis are related to decreased sound tolerance, it is logical to be concerned with the abovementioned problems with over protection. This is not meant to discourage the use of hearing protection, earplugs, or noise-cancelling headphones in the appropriate contexts because exposure to loud sounds over extended periods of time without hearing protection can result many auditory and hearing problems.

Are there certain headphones you recommend for patients that would be using headphones regularly?

I have heard great things about the Bose QuietComfort 35 (Series II) and Apple’s Beats Studio 3 Wireless noise-cancelling headphones. Remember if you are going to wear headphones frequently,then you should attempt to play environmental sounds, white noise, or music, in order to provide continual stimulation to the auditory system in order to prevent deprivation or heightened auditory sensitivity.

Does wearing earplugs with headphones mitigate damage that can be done to the ears from regular music/headphone usage?

You can increase the efficiency of hearing protection by utilizing headphones over earplugs in an attempt to further attenuate sound; however, this is typically not considered best practice unless you have been directed by a hearing conservation program or professional to do so (in order to protect against loud-noise exposure to protect your hearing).

If you are concerned about volume regulation and damaging your hearing, there are headphones and ear buds out there that have volume-limiting features to help prevent against noise-induced hearing loss. However, it is important to research products, as many volume-limiting devices often exceed the decibel level advertised. In addition, there may be ways to bypass the volume reduction feature on many of the headphone sets making them ineffective. If you are listening to music or auditory input at a safe and “comfortable” level, then there is typically no reason to use earplugs in addition to headphones to mitigate damage.

 


Jenna M Pellicori-Curry, Au.D., CCC-A, received her Bachelor’s Degree from James Madison University. She continued to receive her Doctorate degree and Biomedical Sciences Concentration from Salus University. Dr. Pellicori graduated as valedictorian of her doctoral program and currently serves as the lead audiologist at Nemours/Alfred I duPont Hospital for Children’s New Jersey satellite locations. Dr. Pellicori is licensed to practice audiology in New Jersey, Pennsylvania, and Delaware, and she holds a hearing aid dispensing license for the state of New Jersey. She continues to maintain her Certificate of Clinical Competence from the American Speech-Language-Hearing Association.

Join us on January 28th at 7:00 PM EST for a Workshop “Misophonia and How It Relates To Other Disorders”. $75. Featuring Dr. Jenna Pellicori and Dr. Jennifer Jo Brout.

https://misophoniaeducation.com/product/workshop-how-misophonia-relates-to-other-disorders/

July 22, 2018 0 comments
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Advocacy

Fight or Flight and Misophonia

by Sensory Diversity June 8, 2018
written by Sensory Diversity

The fight or flight response refers to a natural reaction that a person experiences during a time of intense stress or fear. What does that mean? It is a natural response for your body to in a crisis, essentially your body has a built-in defense system.

Imagine that you are walking down the street and someone grabs you from behind, points a gun in your back and demands your wallet. His buddy ties your arms and feet and puts a gag in your mouth. How would you react? It would be highly unlikely that you would be calm and say, “sure, no problem, here you go, have a nice day.” No! Your fight or flight response will be instantly activated. Your blood pressure will increase, you will feel panic, possibly break into a sweat, you are anything but calm. There is a huge rush of adrenaline. You may experience super strength and try to fight back or you may be frozen in time praying for this event to be over, filled with hopelessness. What can you do? You cannot get away, he has you tied up. He takes your wallet, your cell phone and keys and in the blink of an eye, they are both gone.

After this type of traumatic event, do you honestly think that you can just calm down and go back to your normal happy mood after the assailant leaves? Of course not! You are going to need ample time to settle down and most likely this event will continue to haunt you for days to come. In all likeliness, you are going to be nervous about walking down that street again.

I am sure that you are asking yourself, “what the heck does being held at gunpoint have to do with Misophonia?” Good question. Although the event itself does not, the fight or flight reaction is something that a sufferer experiences a great majority of the time. I know it is very difficult for someone who does not suffer from Misophonia to understand the disorder, but I think it is just as important for them to understand the fight or flight reactions that we live with because of the triggers. Common assumptions are that we can ignore or tune out the noise, but we cannot. When we are triggered our fight or flight response is instantly activated.

Of course, there are other examples in which a person can experience fight or flight, but I wanted to give you an example of the feeling of pure terror and helplessness because that is how a Misophone feels when triggered.

Now, imagine if you lived most of your life in that fight or flight mode. Misophonia is a condition where sounds activate the fight or flight response, period. We have no control over what triggers us, nor can we control our fight or flight response. Just as the victim above will have a different reaction to the above situation, a Misophone will also react differently to triggers.

You have heard the term “sound rage”, this is when the sufferer goes into fight mode. A Misophone can literally go from being the nicest person in the world to the Incredible Hulk in seconds from exposure to a trigger sound. We are not even talking about prolonged exposure, it could be as simple as one quick click of a pen. Just because the click stopped does not mean that our fight mode does, it will take a significant amount of time to recover from that trigger. For some people, it may take a few hours, for others several days. Obviously, other factors should be considered, a person that is hormonal, tired, hungry and anxious will most likely have a stronger reaction to the triggers.

When a Misophone is triggered and goes into flight mode, basically they try to escape their triggers. A mild trigger might make someone get up and leave the room, a more severe reaction will mean they storm off, as fast as they can. It is important for a sufferer to have a safe place, a place that they can go to get away from triggers. Typically, this is a room in the home. In my case, it is my bedroom. I can close the door, turn off the lights and sit in the dark, I can plug in my wave lamp, or I can just curl up in a ball and cry my eyes out. No matter what it is that I am doing, in my case, it is very important that I am alone. My family knows (and it took a while to get them to realize it) that I need my quiet time.

Away from home, it’s not so easy. I do have a severe case of Misophonia which greatly impacts my daily life. If I must go to an event, I spend a decent amount of time planning my coping strategies. What if this happens? Where can I go? I have been stuck in situations without a plan and the consequences were brutal. Just as a school or business has an emergency plan, I have an emergency plan for myself.

Reactions do not necessarily have to be fight OR flight, in many cases it can mean fight AND flight. Many times, the fight mode hits first, rage and anger hit, then you realize, “I just have to get the hell out of here.” There is nothing worse than being in the flight mode and you have no escape. I have had several situations with my daughter, she is terrified that I will hurt myself and many times has tried to obstruct my path to escape. Just thinking about it makes me feel anxious and overwhelmed. My advice for a sufferer is to always have an action plan. You know your triggers, you know your reactions, be proactive.

My advice to friends and family, please try to understand that we cannot control out triggers or reactions. Please give us the space we need to cope and recover. Please try to understand that this is something we cannot control.

Fight or flight, it may be our body’s natural defense mechanism but to a Misophonia sufferer, it is more like torture.

June 8, 2018 0 comments
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Research

Central Auditory Processing Disorder

by Sensory Diversity May 31, 2018
written by Sensory Diversity

Central Auditory Processing (CAP) Information

Tammy Riegner, Au.D., Jessica Godovin, Au.D. PA-Newtown Square/Philadelphia: Jessica Loson, Au.D. NJ-Voorhees/Deptford: Jenna Pellicori, Au.D.

According to the American Speech and Hearing Association, central auditory processing disorder (CAPD), is a complex problem affecting approximately 5% of school-age children. These children may not be able to process the information they hear in the same way as others because something adversely affects the way the brain recognizes and interprets sounds, most notably the sounds composing speech. The behaviors of other disorders, such as a learning disability, language delays, and attention deficit disorder can mimic the signs and symptoms of a CAPD; consequently, it is recommended that these disorders be ruled out prior to conducting a Central Auditory Processing evaluation. Multidisciplinary testing is very important in determining not only evaluation candidacy but potential contributing diagnoses.

Risk factors associated with auditory processing disorder, may include but are not limited to:

• Asphyxia/Anoxia

• Severe Prematurity

• Reoccurring Ear Infections

• Traumatic Brain Injury

• Family history of CAPD

• Lead Exposure

Further evaluation may be warranted if the following auditory behaviors and characteristics apply:

• Difficulty recalling short or long term information

• Mishears information (i.e.: “nose” for “toes”)

• Says “huh” or “what” frequently

• Difficulty following verbal multi-step instruction

• Confuses similar words or sounds

• Unusually bothered by loud or sudden noises

• Requires repetition of auditory information

• Struggles with phonics, spelling, or writing

• Difficulty in the presence of background noise

• Does opposite of what is requested

Candidates for CAPD testing must meet the following criteria:

• Developmental and chronological age of at least 7 years

• Normal peripheral hearing sensitivity (No significant hearing loss)

Contraindications to testing include: cognitive deficits, non-verbal or non-native English speaking, global developmental delays, below average scoring on IQ testing, severe or unmanaged Attention Deficit Hyperactivity Disorder (ADHD), low functioning Autism Spectrum Disorder (ASD), Auditory Neuropathy Spectrum Disorder (ANSD), or significant receptive and/or expressive language disorders.

Courtesy of Neumors Pediatric Hospital (Wilmington, DE).

May 31, 2018 0 comments
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CopingRelationships

“A Family That Eats Together” with Misophonia

by Sensory Diversity May 30, 2018
written by Sensory Diversity

Does your family eat together? Kelly Bruno offers an explanation on why it’s okay if they don’t! 

I ran out the kitchen door with a skip in my step. It was my turn to ring the dinner bell. Dad was up the hill, across the field, and deep in the garden, weeding. My brother was building a bike jump out of a random chunk of cement and plywood on our dirt driveway. I reached up as high as my little arms could stretch and gripped on tight, pulling down with all my might. The sound echoed for miles around.

Soon, we all sat around the dinner table. Bowls were placed in the center to be passed around and the food quickly filled our plates. Metal spoons hungrily scraped the mushy mashed potatoes off from our plates. Mouths opened and closed, working hard on their steak. The words and laughter filtered through our moist, broccoli stuffed teeth.

“Kelly, close your mouth when you eat,” my mom said, then sipped her tea. She always taught us our manners.

Our dinner table was the picture of family values, “A family that eats together, stays together.” Maybe you have heard the quote before.

Today, I cringe at the idea. Not because I don’t like it, or think that it is untrue. Eating together as a family can be a beautiful thing: a time to come together, talk about everyone’s day, relax, and laugh. It can. Or, it can be a nightmare. A nightmare if you, or someone in your household has Misophonia.

Misophonia. Where every sound and sight through a meal can switch your brain instantly into a fight or flight response.

The metal spoon scraping across the dish, mouths opening and closing, the moist, smacking chews or crunch, the words, their sound as they mesh together with food being chewed, and even the slightest sip from another, just politely taking a drink: all of these things, these normal, everyday actions and sounds that we see with our eyes and hear with our ears, they each have the potential of destroying the very heart of that family value quote.

So for you, the family with Misophonia, I offer you this instead, “A family that eats together, will most likely not stay together.” I do not apologize. It is a hard fact, and one that is lived by many.

For us, we have come to accept that family meal times are times where the family can eat where they want, when they want, in separate rooms, with music and televisions playing loudly, and sporting big, bulky noise cancelling headphones. And, that is ok.

It is ok in this day and age to be different. We can find other ways in which to connect. We can go for bike rides, a hike in the woods, swimming, to a concert, and so many places more. We can connect through understanding, that sitting together at a table with food is hurtful to the sufferer, and so, we will not participate in it. And for that, we should be proud.

So the next time you are in the process of filling out that random questionnare, and the question pops up of whether you sit as a family to eat your meals, remember, it is ok to check, “No.” It does not make you a bad person or make your family of a lesser value. If you, or a member of your family suffers with Misophonia, for what you are doing (or, not doing), I say, “Hooray!” And, “Good for you!” It is ok.

Let us stand up for ourselves and our families. Let us tell others about what Misophonia is and what it means to live with it. Because the more we do, the more we can finally shine the light down on our own family values and ways. Let us lead the way.

Written by Kelly Bruno, author of Sound. 
May 30, 2018 0 comments
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Coping

Getting Stuff Done With Misophonia

by Sensory Diversity May 26, 2018
written by Sensory Diversity

Let’s face it – misophonia throws us a curve ball. Every single time that we’re faced with a trigger situation, our current path is set off course and we have to readjust. Getting stuff done is hard! Depending on your severity, you may already be choosing jobs and lifestyle changes that accommodate for the time-sucker that misophonia can be. I’m not going to lie, my advice won’t be perfect. I’m actually nocturnal because of my misophonia. It’s just too much to be awake during the day whilst lawnmowers buzz, cars blast by, and any other foreseeable interaction. Here are some tips on how I still get things done, despite misophonia.

Getting stuff done is hard! Getting stuff done with misophonia, is a nightmare!

1. Allow yourself the time to recover

Take breaks when you have to. It’s not a sign of weakness to need time to calm down. Explain to your supervisors, and have a doctor write a note to back you up. Here is a sample accommodation letter.

2. Have conversations with those triggering you, whilst not triggered, in a polite manner

Explain the disorder to them so that they might be more accommodating when the situation arises.

3. Don’t expect miracles

We’re all going to have times, situations, or events that are more triggering than others. Plan for them. If you have to pick up groceries, do so at a time when there are less people there. You could even call the store and ask them their hours, or you could get proactive – sign up for a delivery service if it’s available in your area. Find ways to rearrange tasks so that the time you’re triggered is minimal, and then you can recover better in the few times you are triggered.

4. Plan to change plans

It’s okay to change plans! Really. It’s okay if you’re not able to do something and you need to reschedule. Learn to take care of yourself first. You are the champion of your body and health. Only you can know what you can handle.

5. Have anti-stress activities that won’t trigger you

Sometimes the key to getting things done is to be less stressed overall. Have at least 1-2 activities that you engage in regularly (that do not trigger you) so that you have planned downtime that you know will be relaxing, and completely without stimuli. Knowing this time is available will make the triggers seem temporary.

6. Cram what you can into your “good hours” and don’t stress the “bad ones”

During the night, when there are no people around, that’s when I do whatever I can get done. There are always undoubtedly things that get pushed. I learn to live with it. I do the things I absolutely have to, and then the ones that I can if there’s extra time.

Thanks for reading! I hope these tips helped you.

 

May 26, 2018 0 comments
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Coping

Managing Stress and Misophonia During Finals

by Sensory Diversity May 19, 2018
written by Sensory Diversity

Misophonia is way worse when you’re stressed – managing stress and misophonia during finals can feel like its own full time job. Right now I’m going through finals – and my god, every single noise is absolutely driving me crazy! Luckily I have switched to an online university but this doesn’t stop me from being stressed during finals. So, I’m going to write down some tips for studying with misophonia (and anxiety). I also have an anxiety disorder atop of my misophonia, and I think many others might too. Either way lowering your fight/flight threshold is paramount during these situations.

Here are 5 tips for managing stress and misophonia during finals.

1. Don’t judge yourself for what you “can’t do”.

Most advice for relieving stress during finals is to eat healthfully and drink lots of water. By all means, you should. However, this might not be what you’re actually doing. I know I sure as hell have been downing Coca-Cola during this period. It might even be making me more shaky – but trying to deal with my addictions atop of the stress of finals just isn’t going to happen. That’s a problem post-term. Don’t judge yourself if you aren’t able to make healthy changes right now. Try to make the ones you can.

2. Eat something. Even if it’s not healthy.

Again, I am very pro-healthy food, but when I’m stressed I might not be eating at all. So, I think it’s important that we remember to eat something – anything – so that we don’t crash. The more nutrition the better but so long as you have protein and some nutrients you’re not going to die from one week of poor nutrition.

3. Be realistic about socializing.

Misophonia makes socializing hard at the best of times. If you know you can’t go to a movie or restaurant without having a severe anxiety attack or triggers (and then needing hours/days of lost time to calm down) it’s okay to say no! It’s really okay to realize that you just can’t do it.

4. Let yourself take breaks.

It’s okay to watch a few hours of TV. It’s okay to play a game or go for a walk. It’s okay to take an hour to go swimming. Stress just accumulates if you don’t give yourself time to recoup. While you do have to ensure your expectations (studying, assignments) get done, you should be giving yourself mental time to recoup.

5. Have a calm talk with those around you about increased intolerance.

Listen, sometimes we just snap at people for triggering us – even more so when we’re on the brink. Instead, have a calm talk before hand with your loved ones or roommates and explain your predicament. Ask them if for this one week it’s okay if you make further adjustments and maybe make plans for something fun to do with them after as a thank you for their patience. Being up front instead of confrontational works with a lot of people.

I hope these tips helped. Good luck on your finals!

 

 

May 19, 2018 0 comments
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AwarenessRelationships

Difficulties With Misophonia In Relationships

by Sensory Diversity April 25, 2018
written by Sensory Diversity

At what point does Misophonia take over everything that you love. Dealing with Misophonia can be the hardest thing that some people have had deal with, including myself. I have lost friends, excluded myself from social events, lost career paths but most importantly, I may have lost my soulmate.

Misophonia has taken three years of my life so far, everyday gets harder. Therapy, weight gain from medication, exercise, change of lifestyle or meditation are all I know right now. Sometimes I think it would be easier to go through life wearing headphones because escaping the ‘triggers’ is the only thing I know to work for me. But what a horrible life that would be, we can’t let Misophonia control our lives.

Trying to explain Misophonia to anyone can be extremely hard, most people can be so understanding yet some can be so judgemental. It is easy to see a wound or scar, but you can’t see a person’s mind travelling at a crazy speed just from a common noise others hear as a ‘background sound’. Wouldn’t it be easier to plug a USB into your brain and show people what goes on in there?

Every person that has Misophonia can say they avoid the noises that ‘trigger’ them. How can you avoid certain sounds if they are everywhere you go? How do you leave the house? Most importantly how do you stay with someone you love while they are unintentionally pushing you to breaking point?

Finding a soulmate can be hard, finding someone who understands exactly how your Misophonia works is even harder.  But the hardest thing is being with someone who does the ‘triggers’ so often.

As much as you tell your mind ‘it’s okay, you love them, you can deal with this noise’ or ‘it’s okay it’s going to stop in a few seconds’, sometimes that just isn’t enough. I mean would you sit there and continually be stabbed with knife if you had a choice to get up and leave to avoid the pain? I am sure you would get up and leave because why would we put ourselves through pain if we had a choice?

But that’s the difference with your relationship, you don’t want to get up and leave. You want to stay and ignore the ‘triggers’ but sometimes you just can’t. As much as you love them and feel that they are your soulmate, Misophonia rises above all that and you don’t get to make the choice anymore. You must be alone because that’s your way of avoiding that stabbing knife.

To the supportive partner that is taking on a Misophone. As much as you try, the number of apologies you say, the amount of horrible moods you put up with, the difficulties of taking them out to social events or just simple things like going on a date to the movies. You are a wonderful  human for being the most supportive partner through what must be the hardest times a Misophonia person has to deal with.

If we had a choice, Misophonia would go, it would be like it never existed. But that’s the thing, it does, it controls us to avoid places and people, even if that’s not what we want.

As much as you try to cope with the ‘triggers’ or accept their apologies, there is a point where it becomes too much. Mental health is such a tricking thing, you must let that be your number one priority or else you won’t get better, you won’t overcome your Misophonia.

Sincerely,

A Misophonia sufferer.

April 25, 2018 0 comments
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Coping

10 Things To Remind Yourself When Triggered By Misophonia

by Sensory Diversity April 25, 2018
written by Sensory Diversity

Misophonia is hard. Living through triggers is hard too. When you’re faced with triggers, you need to Regulate, Reason and Reassure (Dr. Jennifer Jo Brout’s coping method). The following are things that you can remind yourself while in the midst of challenging misophonia triggers. You might want to bookmark this list and read through it whenever necessary. Read each point, and take deeply breaths between.

Here are 10 Things To Remind Yourself When Triggered By Misophonia

1. This isn’t going to last forever.

2. You’re not actually in danger.

3. The person is not trying to hurt you (if they are doing it to hurt you, you should evaluate how to get out of this toxic relationship).

4. You are not crazy. You have a disorder.

5. While there’s no cure yet, researchers are constantly working to find answers. There’s hope.

6. Everything will be okay once you get some time alone.

7. Misophonia is not just hatred of sound – it’s a flight/flight/freeze reaction. You’ll be okay once the panic recedes.

8. You deserve affection. You are not just your disorder.

9. The anger you’re feeling is not at the sound (or visual) itself, it’s a response to the fight/flight/freeze reaction.

10. You need to breathe! 4-7-8 Breathing techniques can help you calm down.

Dr. Andrew Weil explains how to do this exercise on his website: 

The 4-7-8 (or Relaxing Breath) Exercise

– Exhale completely through your mouth.

– Close your mouth and inhale quietly through your nose to a mental count of four.

– Hold your breath for a count of seven.

– Exhale completely through your mouth to a count of eight.

– This is one breath. Now inhale again and repeat the cycle three more times for a total of four breaths.

 

I personally use this method to fall asleep at night, and can be helpful in stressful situations. You can also try some coping tips here.

April 25, 2018 0 comments
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AwarenessMisokinesia

Misokinesia: Misophonia Visual Triggers

by Sensory Diversity April 23, 2018
written by Sensory Diversity

I’d like to first start by saying that misokinesia (hatred of movement) is a term that oversimplifies things. Research-wise, there’s not enough to go on to say whether or not visual triggers are different from misophonia. They might both be related, they could be part of SPD, or they could be two interlinked disorders. The research simply isn’t there. We also don’t know whether or not all, most, or some sufferers also have visual triggers. For the purpose of this I am just going to use “visual triggers” or “visual stimuli”. I’m not going to simply attribute it to a name or disorder before there is proper research.

My visual triggers are just as hard to handle as my audial triggers. Sometimes they are worse. I find it nearly impossible to escape a sight in the room. Even when I close my eyes, and even hours or days later, the memory is still there. I want to cry as I think of these triggers. Legs shaking, people swaying, fingers and toes tapping. Even improper grammar have been known to become triggers. Double spacing after periods is so intensely anguished, that I’ve had to block people from communication.

I’ve had people tell me, that have misophonia, “You can’t have visual triggers, or be triggered by grammar”. This has been frustrating. As I fight tooth and nail for advocacy, to be told by my own community that I am “wrong”.

Having severe visual and audial triggers has made life more challenging. The grammar and typing, and light effect triggers are so severe that I find it nearly impossible to surf the web, play video games.

I have the following strange, and life-altering visual triggers:

  • Two spaces instead of one after a period
  • Use of “u” “r” or “ur” instead of full words
  • You’re/your used improperly
  • An overabundance of punctuation, especially “!”
  • Legs and arms in places that are strange to me (one leg up, one down)
  • Arms leaning across car doors
  • Untied shoelaces
  • Effects in video games
  • Bright lights
  • Pinwheels, windmills, and all other “rotating” circles
  • Bags (being swung on an arm)
  • Anything flipping or breezing
  • Words used improperly
  • An improper ellipsis (more than 3 consecutive dots …)
  • An over use of ellipses.
  • Chewing (the visual, no sound necessary; actually I am bothered more by the look than the sound)

Do you struggle from similar? For me, visual triggers have been harder to explain because even our own media doesn’t do enough to explain. Of course, I can’t fault us – there simply isn’t enough data (scientific or otherwise). Sometimes it’s hard to handle visual triggers because I can’t wear earplugs for my eyes. I suppose I could wear a blindfold, but this has impractical applications. I am also more likely to remember visual triggers and never want to go back to the place. If I have been visually triggered somewhere in the past, I will not want to go back.

I have had dreams of these triggers. I have had waking nightmares. These visuals are so deeply intertwined in my brain that they haunt me, like a ghost. Sounds might go away… but the visuals remain.

I have stopped having text conversations with many people because they don’t understand. I get it but it’s hard for me to socialize. It’s become further isolation atop of my isolation. I’m not sure what the answer is, but one thing is for sure, we need more research (and don’t worry, we’ll fight for that!).

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April 23, 2018 0 comments
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Sensory Diversity is the recognition that every individual perceives, filters, and responds to the world in a unique way. While neurodiversity celebrates the different ways we think, sensory diversity focuses on the gateway to those thoughts: our senses.

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