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Resources for Parenting A Child With Misophonia
Coping

Resources for Parenting A Child With Misophonia

written by Shaylynn H.

Parenting is tough without any special challenges. Parenting a child with misophonia comes with extra challenges, but this does not mean that you are without hope, and you are certainly not alone in this struggle! The following resources can be helpful for parents of children and teenagers with misophonia. With the right amount of tools and support, your child can learn to cope and manage misophonia in day to day situations.

 

www.Misophoniakids.com

www.Misophoniakids.com is a website focused on children with misophonia. It will be updated frequently, including when new research is available.

 

Free Misophonia Parents’ Guide

This free guide is available for parents’ as a basic introduction to misophonia. It can be downloaded here: //www.misophoniainternational.com/product/misophonia-guide-parents/

 

Sensory Diet by Susan Nesbit, O.T.

This free sensory diet is a template for activities that can help your child avoid “meltdowns” and “shutdowns” that come with misophonia. It can be downloaded here: //www.misophoniainternational.com/product/sensory-diet-susan-nesbit/

 

Misophonia Guide for Doctors

This guide is useful to print and bring to your child’s medical provider to explain misophonia. It can be downloaded here: //www.misophoniainternational.com/product/misophonia-guide-doctors/

 

Misophonia Provider Network

The site www.misophoniaproviders.com helps parents and patients find providers in their area. It is updated regularly.

 

 

May 1, 2019 0 comment
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How Parents Can Help Their Children With Misophonia
Coping

How Parents Can Help Their Children With Misophonia

written by Shaylynn H.

Since misophonia is a lesser-known condition, any parents might feel hopeless upon discovering that their child has misophonia. Unfortunately, there is no official “treatment” or “cure” for misophonia, but this does not mean that parents are in the dark when it comes to their children’s misophonia. While children with sensory needs might have special considerations, they are fully capable of having a happy, healthy, and fun childhood! The following are tips for parents whose children have misophonia.

  1. Learn All You Can About Misophonia
    Resources such as misophoniakids.com can help you learn about your child’s misophonia, and what it means to be the parent of a child with a sensory disorder. Since misophonia is a lesser-known condition, it is important to find accurate information. Reading the literature review on misophonia can provide an overview of current research (//www.frontiersin.org/articles/10.3389/fnins.2018.00036/full). The first step to helping your child with misophonia is to understand that it is not their fault, and that it is not “all in their head”!
  2. Talk to Your Child’s Doctor, even if They Don’t Know What Misophonia Is
    While your child’s doctor might not have heard of misophonia – this does not mean that you shouldn’t speak with him or her about your child’s misophonia. Advocacy starts with parents stepping up and taking their child’s needs into consideration. A helpful approach to discussing misophonia with a clinician is to bring a print out (link to doctor’s guide here: //www.misophoniainternational.com/product/misophonia-guide-doctors/ ) that explains misophonia in a helpful way. Do not be discouraged if your child’s physician has not heard of misophonia – awareness is growing, and by discussing misophonia with your child’s doctor, you are spreading the word!
  3. Discuss Possible Accommodations with Your Child’s School
    For your misophonic child, some accommodations could be helpful. Work with your child’s clinician to draft a letter that outlines possible accommodations that could help your child’s learning experience. Samples of these accommodations are: headphones with white noise, the ability to leave class and calm down, stress-balls and other “toys” that help stress management, as well as the ability to test alone.
  4. Make Your Child’s Bedroom a Sensory-Safe Space
    Your child will calm down much faster if they have a place that they can go to recover. Sensory information is cumulative, so it is very important to have time to “cool down”. Since your child is not habituating (getting used to) sounds, having a place where they can adjust and go back to a calm feeling is quite important. Sensory tools like weighted blankets (article here: //www.misophoniainternational.com/weighted-blankets-misophonia), as well as paint colors your child enjoys, stuffed animals, and as much sound-proofing as you’re able to manage, and a white-noise machine, can help your child feel calm in their bedroom, and can lead to less meltdowns.
  5. Try Not to Force Trigger Situations
    While some families feel the urge to enjoy “family meals” together, you should consider your child to eat alone if they are triggered by chewing. There are many other family activities such as walks, board games, and television time that can be spent together without forcing the child to endure triggers.
  6. Consider a Multidisciplinary Clinical Approach
    A team of audiologists, psychologists, occupational therapists, and other providers might be able to work together to help your child cope with misophonia. You can find providers at misophoniaproviders.com. Different providers provide different levels of support, and by working together, they can come up with a management plan for your child’s sensory disorder.

While misophonia can be hard to deal with, it’s very important that parents remember that while their child is struggling, this does not mean that they cannot enjoy activities. By working around misophonia, children can learn to cope and adapt to the world around them.

Parents looking for more information and help for misophonia can visit www.misophoniakids.com.

 

 

April 19, 2019 0 comment
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I think I have Misophonia, what do I do now?
AdvocacyCoping

I think I have Misophonia, what do I do now?

written by Vicki Sladowski

This article is not meant to be medical advice. It was written by another misophonia sufferer and is a candid account of her own experiences. If you are looking for a professional, please go to www.misophoniaproviders.com.

We have all been there, suffering for months, years or a lifetime with this abnormal aversion to sound. One day we decide to call on our friend “Google” and learn there is a name for this affliction. We read an article or two and BINGO! WOW! That is me! A sigh of relief follows with the “now what do I do?”

Our first instinct is to call a doctor because certainly there is a magic pill I can take that will let me eat in the same room with my family without wanting to strangle someone. Chances are that at some point in your life you have mentioned your aversion to sound to one of your medical providers and your concerns were most likely ignored or dismissed. Why? Why didn’t my doctor diagnose me with Misophonia? Frankly, your doctor(s) have never heard about Misophonia

Who can I call? Where can I go for help? Misophonia is primarily self-diagnosed. Why? There are so few providers familiar with this condition. First, ask yourself why? What is the purpose? The reason I ask you that question is simple.

It is very challenging to find a provider familiar with Misophonia. If you are looking for a medical provider to confirm your self-diagnosis for validation, I would not waste your time and resources. There is not an ICD-10 code for Misophonia (The International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) is a system used by physicians and other healthcare providers to classify and code all diagnoses, symptoms and procedures recorded in conjunction with hospital care in the United States.) This does not mean that your condition is not real, it just means doctors are unfamiliar with it.

If you require accommodations for work or school, you will need medical documentation. In this case, I do suggest that you have your diagnosis confirmed. What type of provider can diagnose Misophonia? Here are some options:

NEUROLOGICAL TESTING CENTER- A neurological testing center can diagnose sensory processing conditions and have resources to refer you for follow up care. Please be wary of providers that say that can cure you. I think it is safe to say that ALL Misophonia sufferers are desperate for relief. Some providers will prey upon this to fatten their wallets.

At this time, there is no medication or proven treatment but there are coping mechanisms you can use. Let’s look at some of the resources you can use.0

AUDIOLOGIST- It is unlikely that you will find a private practice Audiologist familiar with Misophonia. Finding providers will require a significant amount of research. Contacting Audiology departments at larger hospitals will increase your chances of finding someone. Your first question should be, “Does the audiologist treat Misophonia patients?” If the answer is no, move on. One wrong move a sufferer will make is taking articles and information on the condition to the provider. This is not going to make your doctor an expert on Misophonia, so why bother? Naturally, it is a good idea to share the information with your existing providers, but you cannot force a doctor to be able to help you after reading a few articles.

 

What can an audiologist do for me?

An audiologist familiar with Misophonia can diagnose your condition. More than likely it will be coded as something like Abnormal Auditory sensory processing for insurance purposes. They can also prescribe in-ear sound generators, which have been a helpful coping mechanism for some sufferers. Please verify with your insurance plan to see if hearing aids are a covered benefit (they are not covered by all plans.) If they are not covered, the cost starts at approximately $2500. Some providers may offer a free trial for a few weeks. No need to panic, the amplification feature is turned off. The hearing aids will stream very soft sounds, or you can have them programmed to play your colored noises. The pair I was prescribed was programmed with fractal tones and the audiologist followed a TRT protocol (tinnitus retraining therapy).

 

An audiologist can also make a pair of custom molded earplugs. They are expensive (around $150) compared to over the counter foam or silicone, but I have to say that they are truly a lifesaver. By lifesaver, I mean they have prevented me from murdering my snoring husband in his sleep. 😊 I can sleep very comfortably and do not wake up with sore or tender ears. Soap and water keep them clean and I only keep them by my bedside, so I do not lose them. Additionally, if you do opt to use the in-ear sound generators, they can make the custom molded earplugs to use in conjunction with them.

 

PSYCHOLOGIST/THERAPIST- These types of providers can help you find some coping mechanisms that work for you. I would recommend finding a provider who works with patients who suffer from sensory issues or autism, I am not saying Misophonia is on the spectrum. I just feel that it is crucial to find someone who can be extra sensitive to your sensory triggers and needs. Remember, we all have different triggers as well as different coping mechanisms, so what works for me, may not work for you and that is okay. For the most part, I have not found any of the coping techniques particularly helpful in the trigger moment, but they have helped me be proactively for various trigger situations. Let’s face it, sometimes we all must go to a place that we know we will be triggered. It is much easier to walk into that situation as prepared as you can be to handle those triggers.

PSYCHIATRIST- Once again, I must warn you. Some psychiatrists can diagnose sensory processing disorders (which Misophonia falls under). Another instance where pre-screening is very important. If you fail to confirm the provider can diagnose sensory processing conditions, you run the risk of having this condition being diagnosed as a mental illness. As such, doctors are so quick to pull out their prescription pad. Mental illness medications and side effects are terrifying. Did you know that one of the side effects of many anti-depressants is suicidal thoughts? If you do not have a mental illness, some medications can cause mental illness symptoms.

I think one reason it is diagnosed as mental illness related is due to the reactions of the triggers. As you know, when you visit a mental health provider, you are typically given a questionnaire asking about your thoughts and feelings. Chances are that your anxiety is higher because you do not know what triggers you may encounter. Often, I have asked, “should I complete this document based on how I regularly feel? Or how I feel when I am triggered?” The reply has been, “do it based on how you feel NOW.” Well, that certainly is not an accurate assessment. Of course, I am triggered, so naturally based on the “in the moment” answers I can understand why the provider would label it as “anxiety” or “depression.” The last new provider that I went to, I tried a NEW approach. I completed this document when I was at home in my everyday mode. I completed a second form while I was recovering from a meltdown. The answers were like night and day. The psychologist was floored that there was such a vast difference in my mental state when I was in trigger mode.

One thing to remember is that there is a difference between general anxiety and sensory induced anxiety. For some reasons, medications have little, if any effect on sensory anxiety.

I am sure there may be other providers out there, my knowledge is still a work in progress, but I wanted to share a few resources available.

Download FREE the printable guide to take to your doctor here.

February 16, 2019 0 comment
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What Is Misophonia And What Can You Do for Patients?
Coping

What Is Misophonia And What Can You Do for Patients?

written by Shaylynn H.

This article was originally written for Physician’s Weekly and can be sent to your doctor to help explain misophonia to them.

As an advocate for Misophonia, I have met several doctors that have been approached by patients with Misophonia but are not sure what to do – or what the disorder even is. This isn’t the fault of medical professionals because there simply isn’t enough information out there for them in medical journals or conferences. While this will likely change within the next decade, for now, doctors with Misophonia patients are likely to be confused by what to do with their patients. The first instinct of many GPs might be to find an audiologist, neurologist, or a psychiatrist/psychologist, but these professionals might also be uncertain of Misophonia.

If you have a patient with Misophonia, you should first know that this is not simply in their head. Current Misophonia research suggests that Misophonia is a neurophysiological disorder. More research is necessary to determine the exact functioning of Misophonia. Since research is still minimal, it is important that doctors and medical professionals are not quick to jump the gun on treatment for their patients. You can read the literature review for Misophonia research to get a basic idea of Misophonia research and future directions here.

Currently, there is no treatment for Misophonia. There have been no studies that test Misophonia treatment rigorously, and some patients have reported that CBT and other therapies have made their Misophonia worse, not better. For doctors and professionals, a multidisciplinary approach that addresses coping skills and quality-of-life is important to help patients struggling with sound over responsivity. Some of these patients may also have visual “triggers”.

Commonly, patients of Misophonia are triggered by whistling, chewing, coughing, sneezing, and other repetitive noises. Some visual triggers include chewing gum, legs shaking, bouncing, and the action (and noise) of clicking pens. While more research is necessary, there could be a relationship between Misophonia and Sensory Processing Disorder (SPD). It is likely that the amygdala and the fight/flight system is over responsive in patients with Misophonia.

While doctors may feel that there is little hope for treating patients with Misophonia, this is where being empathetic can be your greatest tool. Most sufferers of Misophonia have been told that this is all in their head and that they are simply imagining these symptoms. Empathizing with your patient and assuring them that you believe them is an important step in helping Misophonia sufferers cope with this disorder. You may also want to suggest coping methods such as reducing over-all life stress with patients or help by developing an accommodations plan for patients that are still in school.

You might enjoy reading this HuffPost article “What I Wish My Doctor Knew About Misophonia”. In this article, I make the following point on helping patients when no treatment exists.

“I want my doctor to know that if he acknowledges my suffering and asks me how I think we should go about things that he is doing what he can. I want him to know that I do not expect miracles, I merely expect his patience. I want my doctor to know that if he does not know about my disorder, that is okay. I want him to know that I will be happy to work with him on this discovery.”

For doctors that are interested in potential future treatments of Misophonia, the International Misophonia Research Network (IMRN) has proposed research.

Memory re-consolidation is a therapy that may be extremely promising for misophonia. Memory re-consolidation therapy has been explored mostly in rodents, and is in the beginning stages with regard to humans. Memory re-consolidation study began at the LeDoux Lab at NYU in 2000, with Joseph E. LeDoux, Karim Nader and Daniela Schiller.

In order to explore the possibilities of memory re-consolidation for misophonia, IMRN Director (Dr. Jennifer Brout) provided resources to the LeDoux lab to study learning and habituation in rodents who were highly sensitive to auditory stimuli. The rodents that were initially more responsive to sound, demonstrated an impaired ability to extinguish the association between repetitive auditory stimuli and sympathetic nervous system arousal (fight/flight) that had been paired in memory. A follow up to this study would include trials of memory re-consolidation therapy in rodents who also displayed the inability to unlearn this associated response, and to replicate this paradigm in humans. For more specific information about memory re-consolidation you can watch this youtube video.

https://www.youtube.com/watch?v=JKiV3FNpXh

A provider network for doctors interested in helping patients with Misophonia is dictated by the IMRN. You can also use this resource to find multidisciplinary practitioners that are able to help your patients with psychology, psychiatry, audiology, occupational therapy, etc. If you are interested in joining please do not hesitate to use the form on site to apply to be listed. A CEU credit can be obtained through Drexel that provides the basics on Misophonia for those interested. You can find the provide network here.

A free guide for doctors has been released by the IMRN (through Misophonia International) that helps overview Misophonia for clinicians. You can download it here.

 

February 11, 2019 0 comment
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The Truth About Misophonia Treatment
TreatmentVideos

The Truth About Misophonia Treatment

written by Shaylynn H.

There is no current treatment for Misophonia. While this can be hard for sufferers to hear, this doesn’t mean that there’s no hope for Misophonia.

The Misophonia and Emotion Regulation program at Duke University, made the following statement on Misophonia treatment:

There are no single specific behavioral or device-based treatments that have been rigorously tested scientifically across multiple studies and … shown to treat Misophonia. At this point, there only are early small scale uncontrolled and pilot controlled clinical studies. In addition, there are unstudied approaches used by clinicians. Without being subjected to research, it is not possible to know whether unstudied treatments can be expected to help.”

– http://dukescience.org/content/misophonia

  1. While there is no treatment for Misophonia, you can still use coping techniques to help cope. Several resources exist to help aid you.
  2. The number of coping providers for Misophonia is growing. It can be easy to feel like you’re alone, but everyday there are new providers across the US (and the world) that are becoming providers for Misophonia sufferers. You can find providers at misophoniaproviders.com. Professionals such as audiologists, counselors and psychologists, psychiatrists and neurologists and medical doctors can help you to learn to cope with.
  3. If your doctor or counsellor has not heard of Misophonia, you can bring them resources to help explain the disorder. The IMRN has created a free guide to print and bring to your doctor, which explains the disorder and its research implications. You can find a link to this free download here.
  4. Anybody saying there is a cure for Misophonia does not have the scientific evidence to back this yet. Without scientific trials, it is impossible to say if something can help Misophonia patients, you should use caution if approached by a provider that says they can get rid of your Misophonia or treat your symptoms in entirety. Furthermore, you should always talk to your doctor before making any health changes.
  5. Trying experimental treatments could cause more harm than good. Since there isn’t enough research on these treatments, there is a possibility that they could make Misophonia worse instead of better. You should never try a treatment for Misophonia without the advice of your doctor.
  6. Misophonia research is growing. In the past it was uncommon to find research studies on Misophonia, but now there are a few papers being published each year. Sufferers interested in a future treatment should look into research and can learn about Misophonia research initiatives at misophonia-research.com. The International Misophonia Research Network recently published a Literature Review which discusses the current research on Misophonia, as well as a research agenda. You can find the link to this paper here: https://www.frontiersin.org/articles/10.3389/fnins.2018.00036/full.

While it can be hard to hear that there’s no treatment for Misophonia, you should know that it is possible to live a fulfilling life as you learn to cope with Misophonia. By using coping methods such as wearing headphones and earplugs, avoiding situations that may be too overwhelming, and lowering your overall stress, Misophonia sufferers have learned to adapt to the world around them.

In the meantime – sufferers can look into research and help increase the likelihood by donating to research studies as well as promoting advocacy and research by legitimate researchers. Most importantly, sufferers of Misophonia should not lose hope!

 

 

October 19, 2018 0 comment
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