Author

Vicki Sladowski

My name is Vicki and I am a lifetime sufferer of Misophonia. I grew up thinking I was a mean, hateful monster, only recently did I learn that I have Misophonia. Like most sufferers, when I found out I had an actual disorder I was so relieved to know that it is not my personality, and most importantly there are people who UNDERSTAND what I am going through and I how I feel. We are not in this alone.

Advocacy

Are Advertisers Enticing or Repelling Consumers?

written by Vicki Sladowski

Dear Advertisers

I have always been a “brand loyal” consumer. Call me a snob but I just do not buy generic or other brands just to save a few pennies. Despite what people think, you CAN taste a difference between Wonder bread and Butternut bread. The reason I can taste the difference may be a part of my Sensory Processing Disorder, I am not sure. With that being said, I would like to add that my children can tell a difference in bottled water. Water! A virtually tasteless beverage and they can tell if I buy a different brand so there must be some truth to my statement. Lately, many commercials have caused me to rethink my brand loyalty and opt to buy substandard products because of their commercials.

I suffer from Misophonia, a debilitating audio processing condition which causes an immediate fight or flight response. Suffers can be triggered by many different sounds, some more common triggers are mouth sounds including (but not limited to) eating/mouth sounds, snapping, clicking, tapping, whistling, etc. In this article, I will be addressing just a couple of specific trigger sounds that seem to be quite prevalent in commercials. People with Misophonia can become irate, enraged, or even panicked when they hear their trigger sounds. Sometimes the sounds cause physical pain. Levels of the Misophonia reaction can vary greatly and can be quite extreme.

An Advertiser’s responsibility is to market the sale of a product or service. Their main goal is to create commercials which are attention-grabbing and memorable. However lately many marketing techniques that advertisers are using to gain attention are alienating consumers with sensory issues and may actually be driving customers away.

Duracell, a very popular brand of battery has released a commercial which shows a woman on a flight with noise-canceling headphones which needed new batteries and a kid shoving chips in his mouth, aggressively chewing with his mouth open. If you suffer from Misophonia, you know the commercial I am talking about as it has been a huge topic of venting in the support groups. Many Misophonia suffers took the time to reach out to Duracell and voice their complaint/concerns with this commercial. I personally sent an email to their marketing department explaining the condition and I included several of the comments from other sufferers from an online Misophonia Support Group. Unfortunately, this commercial is still on the air and many of us have boycotted Duracell batteries. My brand loyalty has gone out the window. I would prefer to buy any other brand of battery even if they require more frequent replacement because of this commercial. The company does acknowledge the need for the noise-canceling headphones but with the way that their message is executed does not show a true understanding of why they are needed.

Colgate toothpaste, their commercial begins with an actor sitting in a movie theater chomping on ice. Are you kidding me? There isn’t even any warning to give viewers a chance to hit the mute button? The very first shot is the insufferable sound of ice crunching? The only thought that comes to my mind is that I hope Luke Wilson busts his teeth out crunching the ice and that I will never be buying Colgate toothpaste again!

Snyder’s Pretzels has a commercial depicting a conference call and one of the idiots on the call is crunching on pretzels without any consideration for everyone else on the phone. WHY?? What is the purpose of that? You can simply advertise that the pretzels are crunchy, we do not need to HEAR the crunch, believe me! The same applies to the many other chip/snack companies. Is it so difficult to omit the poorly mannered people masticating handfuls of chips or talking with food in their mouth? Triggers aside, this behavior is offensive! What a wonderful lesson for our children!

Let’s take a moment to talk about whistling. What the bloody hell is the purpose of someone whistling in a damn commercial? That is definitely another sound that sends most of us into an instant rage. Truth be told, I have been known to throw the remote control across the room when someone starts to whistle on the tv! Whistling is very irritating to people who do not have aversions to sound. Isn’t there a more creative way to get consumers attention?

Allow me to be perfectly clear, it is unrealistic to expect companies to create their promotions around Misophonia sufferers and that is not what we are asking them to do. However, there is truly no valid reason to blatantly emphasize crunching sounds or whistling or any other sounds that may assault our nervous system. Advertisers should be to be a little more sensitive to people with sensory processing deficiencies when creating commercials. The sounds of the child person crunching chips not only contain audio triggers but visual triggers as well. This results in a very adverse reaction within the sufferer that goes far beyond annoyance. It causes both physical and emotional pain that does not easily recede. This request is not just for Misophonia suffers but includes anyone who suffers from a sensory processing disorder as well as autism.

By using these intolerable tactics, you are achieving your goal of attention graving, you are leaving an impression on consumers of your product but it is certainly not a positive one. I will continue to boycott products who use offensive approaches to grab my attention in their campaigns and will encourage my fellow sufferers to do the same (if they haven’t already).

September 13, 2019 0 comment

Coping

Is My Misophonic Child Safe?

written by Vicki Sladowski

Misophonia is most likely a neurological condition in which the sufferer has negative reactions to sounds. It causes an immediate fight, flight or freeze responses. These responses cannot be controlled any more than the weather, but you can prepare yourself for the storm.

As parents we want our children to be happy, healthy and well-adjusted individuals. Unfortunately, that does not always happen, but we can do everything in our power to help them cope with various situations.

This article is going to be talking quite a bit about safety. Your home is a safe place, in a nice neighborhood, surrounded by family that loves and cares for each other, childproof and safety locks on the cabinets and drawers, you have all bases covered. Do you, really? There is a difference between being safe and feeling safe and that is what I would like you to focus on because living in a world where you are constantly on in fight or flight mode does not FEEL like a safe place. How can you make your child feel safe?

You have observed some obvious triggers for your child whether they got angry, frustrated, covered their ears, ran out of the room, etc. Make a list of those sounds, their reactions and keep a running log of these things. No one knows your child better than you do. Knowing triggers can help you be prepared for various situations. For example, if eating sounds is a trigger, it might be best to skip having dinner at a restaurant, opting for take-out instead. If eating dinner as a family is something you normally do, it is ok to allow your Miso child to eat in another room, or to allow the television or music to play in the background.

When you live with someone with sensory issues, forcing certain behaviors can be devastating to the child and they will not feel safe, not even in their own home. Your child trusts you and expects you to protect him and he needs your guidance until he can protect himself. Never think that exposing your child to triggers will “toughen them up”, not only will it make the triggers worse, he may end up resenting you for it.

Take a moment and think about what things make your child feel comfortable. Does he have a cozy blanket or favorite stuffed animal? Do they like to color, play with blocks, play-doh or Legos? Is there a song or songs that soothe them? I am referring to younger children, but the same concepts will work for older children as well as adults, you just need to make them age-appropriate.

I think it is very important to create a special “ME TIME” space for your child. This does not involve purchasing expensive things, this is about taking a section of his room and making a safe haven for him to retreat when things are overwhelming. I do not want you to think of this as a time out because it is not a punishment at all. When you see your child start to get overwhelmed, take him to the designated place. For younger children you can take them in their room, they may want mommy/daddy cuddles to soothe them, or 5 minutes snuggling with their favorite doll or stuffed animal. Just a few minutes to decompress will help so much, possibly followed by a quiet activity. Have a juice box and finger paint together. Participating in a fun creative activity will divert his attention from the negative feelings, provide an outlet for the negative feelings as well as strengthen your bond. In a nutshell, you want to work on his other senses; looking at pretty pictures, using his hands to mold play-doh or sand, anything to take the focus away from the sound.

Children (especially younger children) do not equate the sounds with being triggered. They just know the sound makes them very upset and angry and they want it to stop but they may not know how to explain it and that is okay, this is a learning process for you. If you see your child being triggered, remove him from the situation before things escalate. Perhaps he is watching a show on tv and something triggers him, hit the mute button. Divert his attention away from the trigger. When you consistently remove your child from the trigger, he will learn “I need to step away” and calm down. Believe me, these habits will be very useful tools that he can use until they discover a treatment or cure.

The next thing I want to talk about is violence. Violence is not acceptable, BUT it is not uncommon for that fight response to make a child want to hit something or someone. Children lack the self-control needed to abstain from this action and may hit their sibling because they coughed too loud. Remove your child from that situation. Personally, I do not think to punish him is the answer because it is a Misophonic response. He just needs some coping skills to redirect that rage. When he is calm, you should address the fact that it is not acceptable to hit. (As an adult sometimes, I have difficulty abstaining from throat punching someone for breathing wrong)

An occupational therapist may also help provide some very useful coping skills that you can use with your child. The goal is to make a safe place for your child as provide the tools and lessons for him to be able to self-soothe so he feels safe.

July 24, 2019 0 comment

Awareness Relationships

My Loved One has Misophonia

written by Vicki Sladowski

What can I do?

Communication and Understanding Triggers

Misophonia sounds like a made-up term, “hatred of sound” is the literal definition. As with many other words and phrases, it should not be taken literally. A person with Misophonia does not necessarily hate sound although we can certainly grow to hate them based on our trigger reactions.

Please understand that Misophonia is nothing personal. There are so many inconsistencies with this disorder. Many times, we can make the same sound that sends us into a frenzy and it doesn’t bother us. I have heard many times, “Why can you eat chips and I can’t?” That is one of those unanswered questions.

So many people voice concerns about having relationships with Misophonia. Will I ever find someone to accept me? Will I ever get married? Will I ever be able to have children? The answer to all those questions is YES, you can but it takes work. Before you roll your eyes, please remember that all relationships take work and suffering from any type of affliction is going to add obstacles, you just must both be committed to overcoming those barriers. I am not saying it will be easy, but it is certainly possible.

If you have a spouse, a partner, or child suffering from Misophonia you should really try to support them as best as you can, this is part of being in any kind of loving and supportive relationship. Misophonia sufferers understand that this is a very challenging condition to comprehend, but if there are some things that you could do to help improve our quality of life, wouldn’t you want to? What can you do to help? You can LISTEN.

Communication is so critical in any relationship whether its business or personal. Communication builds trust and openness. Sit down with your loved one when you are both in a calm state. Ask them to tell you what triggers them, how does it make them feel? Do they have the urge to run away? Do they feel rage? Does it make them cry? It is imperative that the sufferer is open and honest with you, that they know that you are not judging them, but that you are truly interested in trying to help. I really cannot stress this enough, this is NOT the time to sugar coat things to try to spare someone’s feelings. If your partner has a habit that is a trigger for you, it is best to be open about it, so you can deal with it appropriately. It deserves to be repeated, this is nothing personal. Our brain translates triggers sending us into fight or flight mode. It does not distinguish that the sound is coming from from the love of our life, it is about the sound NOT the person making it.

Once the triggers are identified, you can work together to develop ways of coping with them. Since everyone has different triggers, I am going to provide a few examples of the most common triggers and some common things that may help.

EATING SOUNDS- We all have to eat so this is not something we can just stop doing. Some people are only triggered by certain eating sounds such as crunchy foods while others are triggered by ALL eating and/or mouth sounds.

For someone that is mildly triggered, they can get through a meal with some background music or the television playing in the background.

Someone with a little stronger reaction may not find the ambient noise as helpful, they may need to wear earplugs or earbuds to stream the music directly in their ears.

Then you have someone with an extreme aversion to eating sounds (like myself), I need to eat in another room, I will leave the room if someone is eating. Think of it as a give and take situation. Perhaps you are sitting at the table with a crunchy snack and the sufferer walks in, it is not an unreasonable gesture for you to stop eating for the few minutes it takes them to grab a glass of water and exit the room. We truly do not expect to walk into a room and have you leave just because you are eating. It is up to the sufferer to recognize that they are interrupting your meal and they should respect you and leave. On the other hand, if the sufferer is sitting in a room you really should not walk in and start chomping away. It is just simple respect for one another. It is not that difficult to do that, is it?

SNORING- This is a very common trigger, even for people who not suffer from Misophonia. Snoring can be a sign of a serious health issue, so I would encourage you to seek medical attention to rule out any medical issue. However, that process can be time-consuming, so most people will not follow through. Earplugs and headphones seem to be a Misophonia sufferers’ best friend, but they are not always the most comfortable to sleep in. The last thing you want to do is wake up with sore or tender ears. There are many options for ear protection that you can purchase over the counter such as foam or silicone that you can mold but sometimes there can be issues. Foam plugs may pop out of your ears, the silicone can get stuck in your hair. You just need to find out what works for you. My audiologist made a custom pair of earplugs that I could sleep in, those combined with my husband’s c-pap machine have improved my quality of sleep.

Some people find sleeping with a fan or white noise helpful.

There was a period in my life where my husband’s snoring was extreme I decided to sleep in another room. We would go to bed and have our cuddling tv time, then when it was time to sleep I retreated to the extra bedroom. Sleeping away from one another may seem like you are crushing the intimacy but if you look at the whole picture, it is helping strengthen your intimacy because you are both getting rest and not resenting one another. You are not punching, kicking or pushing your partner into another position, you are not waking up in a foul mood because you were triggered all night. You can start the morning fresh, happy and without resentment to your partner. Once I explained to him that this was not a rejection, this was something we needed to do for us, he accepted it without feeling as if I was abandoning him.

Sometimes we are not even aware that a sound is a trigger until it is too late. You may find it useful to come up with a code word that your partner can say when he/she is starting to feel triggered before the situation escalates.

Another important question for you to ask… What do YOU need when you are triggered? Just as our triggers vary, so do the ways that we cope with things. For me, I find the best way to recover from being triggered is solitude. This is another reason that communication is key. My husband loves me, he wants to protect me and comfort me. When I am triggered and he is hovering over me asking what I need, my rage escalates, it takes longer to calm down. I finally explained to him that I just need to be alone, it is not him, it is just something that I need to help me relax. Once I explained it to him and he did not see it as rejection, he respects my solitude. Does your partner need to be alone? Do they need you to hold them?

Identifying the needs of one another will definitely help strengthen your relationship. Your loved one has Misophonia, this is a part of who they are, can you accept it and love them anyway? Are you willing to be a part of their support system? If the answer is YES, it’s time to sit down and have that talk.

July 22, 2019 0 comment

Coping

Misophonia House Hunters (Entry 2, Vicki): The Joys of Relocation

written by Vicki Sladowski

House hunting can be a fun and exciting time. For someone who suffers from Misophonia, it can be downright terrifying! Looking for a perfect home is not as easy as it sounds. First, you prepare your wish list, and prioritize your “must haves.” Luckily, with the internet and realtor websites, you can shop online and weed out many homes. The dreaded day will come when you need to go “shopping” and look at these homes in person! When you suffer from Misophonia, you must prepare for the worst and hope for the best.

My husband was relocated to a town over 6 hours from our home, and we were given one month to move out of state. In our case, we did not have the luxury of time on our side.

Ideally, we wanted to build our home, to make sure we had all of the things on our wish list. One major item was specifically designed for me, something we would most likely not find in a pre-existing home, a soundproofed room! My own personal space on the opposite side of the house, possibly a room over the garage that I could go to and just “be” without hearing the tv blaring or my daughter giggling incessantly on her phone. Building a home takes a minimum of 6 months based on the provision that the weather cooperates. Clearly, building a home was not in our immediate future. Sure, we could have opted to live somewhere temporarily while the home was being built, but frankly, I did not want to have to move twice.

After countless hours on realtor websites, we were able to narrow our list down to properties that we were really interested in viewing. Next, we had to schedule showings. Breathe… I was not looking forward to this part. I made sure that our realtor was aware that I had Misophonia. I know! You are probably thinking, why would she do that? She is not going to understand Misophonia! Granted, I put it in the simplest of terms, that I have an extreme aversion to sound that will evoke an immediate fight or flight, and the results would not be good for anyone if I were triggered. With that in mind, our family took our own car and followed the realtor from property to property instead of the traditional ride-along.

It’s actually kind of funny to think about things a normal person would look for in a home. Most people look at the foundation, the mechanicals, neighbors, etc. As a Misophonia sufferer, I am looking at a home for possible triggers, which definitely helped narrow our list down even further.

House #1- This was a nice house but the homes were pretty close to each other. It was literally about a block away from the high school, a plus on one hand, since my daughter is a freshman, but on the other hand, there would be school bells, football games, etc. Reject!

House #2- This was a house I absolutely fell in love with online. As we pulled up to the home, neighbors are not super close, bonus! It is the last house on the block in what would most likely end up being a cul de sac and it backed up to farmland. New house construction sounds? Kill me now! However, the new builds would probably be years down the road as the end of the block was still working farmland, as in harvesting equipment. I am pretty positive that farm equipment would be loud and trigger me. Reject!

House #3- The first thing I see on his block is there are several homes on the block with basketball nets in the driveway! No need to even look at the house, thank you, the last thing I need to hear is bouncing basketballs from multiple houses all summer long.

House #4- Too close to the airport, keep going.

House #5- Another property that I really loved online. There was an issue with the lockbox, and it kept beeping as my realtor tried to retrieve the key. Not good, panic was setting in as tears start welling up in my eyes then suddenly PINCH! What the heck? A wasp just stung me on the back of the neck. Sorry, but I think I am taking that as a sign. Yes, it was without a doubt a sign, we did go inside and the floors were squeaky! Three strikes! Moving on.

House #5- My realtor points out there is a busy street nearby, “you may have a lot of traffic sounds.” Guess we will rule that one out too! At least she was mindful and taking the fact that noise factors were a serious deal-breaker for us.

Our realtor offered to buy us lunch. Gasp! Thank you for the offer, but we really need to be heading home. (I cannot eat in restaurants, but I did not want to go through that whole explanation, sometimes less is more).

I was very fortunate on my house hunting day, none of the homeowners were home and about half the houses we looked at were new construction. We did manage to find a home that satisfied almost everything on my want list, my husband not so much, but he is hardly ever home, anyway! Although it does not have a sound-proof room, it does have a full basement which offers the potential to make the whole level sound-proofed when we finish it.

When you are house-hunting, you are shopping for a permanent home, so it is very important to find not only a place that you love but a place where you can feel safe. This is a long term commitment, so it is pretty critical to make sure this is the right house or apartment for you. Granted, we cannot avoid all triggers but in this case, you are in total control, you know your triggers. Some things to keep in mind when house or apartment shopping are to be aware of any possible triggers and make sure that your realtor is aware of your condition. In our case, we were completely unfamiliar with the area and because our agent knew about my condition, she was able to point out potential triggers. Remember, a house or apartment is not just an address, it is your safe HOME and your home should be a place that you feel safe.

February 17, 2019 1 comment

Advocacy Coping

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 1 comment

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