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.

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 0 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

Awareness

Explaining Misophonia to Your Child (Ages 6-10)

written by Vicki Sladowski

Ages and Stages- Explaining Misophonia to your child – Part 2

As a parent, it is your job to do your best for your children. A mom is expected to hold in her fears and put on a brave face for everyone. Moms cannot get sick but when they do, it doesn’t matter. We must be the soldiers that carry on, making sure everyone is dressed and fed and ready to go. All the while, we are dying inside.

What happens when you cannot be your best, no matter how hard you try? It is ok not to be okay. Accept that you are no one expects you to be perfect. Taking some of that stress off will help tremendously.

If you suffer from Misophonia, you already know what a challenge it can be to explain your condition. People do not understand it, some may even make fun of it and go out of their way to trigger you for their own pleasure. Why even bother explaining it to your kids, right? Wrong!

First of all, not everyone has the same mentality. Secondly, despite being the loud little monsters running around wreaking havoc on your life, children do have a very understanding and sympathetic side. A child’s brain is also like a sponge, take advantage of that fact. Not only will you help yourself, but you will also raise your child to be more sensitive of other’s needs. Train them while they are young, mom!

(Obviously, I am writing this from a mother’s perspective but it certainly applies to daddies too!)

How do you explain Misophonia to your children?

Ages 6-10

When you are trying to explain Misophonia to a child, you should put it in terms that they can understand. Depending on what kind of triggers that you have, you can customize your explanation. Hopefully by this time you have had some conversations in which you have prepped your child for situations they may encounter in the classroom. School-aged children tend to pick up bad habits from other children to be “accepted.” Sadly, this will often involve teasing or bullying other children because of their differences.

At this age, children have a better understanding of things that are going on in the world. They are school aged so chances are they have encountered some form of sensory disorder through their peers. It is very important at this age that your child understands the severity of Misophonia as it will translate to other areas such as a child with OCD or autism.

Taking advantage of opportunities when you are out and about to educate your child on why some children/people are different is key. Some simple things to teach your child would be:

– Do not stare at someone, just because he or she looks different. They did not choose the way they look and sometimes, they cannot help the way that they act.

– Do not judge people by the way that they look. Chances are that the person with the craziest smile is probably the nicest person that you will ever meet.

Be respectful. If someone asks you to stop chewing gum, or chew with your mouth closed, be polite and try to comply, there is probably a reason they are asking.

How do these examples apply in Misophonia? By taking these opportunities to show your child that little things like using an inside voice can make such an impact on others. Pretty soon, when you catch your husband chomping on a handful of chips and you l hear your sweet little Katie saying, “Daddy, don’t do that, it hurts mommy’s ears.” It will all be worth it.

When my children were in the 6-10 age group, we did not know that Misophonia had a name. My children were raised to chew with their mouths closed and not talk with food in their mouths. They knew that they could snack on crunch foods as long as it was in another room. There was no question that these triggers drove me insane but we did not know why. Since that was the way that they were raised, in our case it was never an issue. But what if your child was not raised the same way? How do we get them to understand?

Kids want to play, run and have fun. Unfortunately, these activities tend to come with screaming and repetitiveness. You don’t want to stifle your child’s right to be a kid. How do you get them to quiet down? Hopefully, your child will be respectful enough to have a simple conversation. Sit down with them, explain that there are certain sounds that “trigger” you. Please do not use words like “bother” or “annoy” as they can possibly do more harm than good in the explanation. Being triggered is very different than being annoyed. A conversation can go something like this…

Katie, mommy has a problem with her ears, when I hear certain sounds, they are called trigger sounds and they can cause me to get very angry and crabby and I cannot control those feelings. For example, do you remember the other day when you were digging through your legos and I started to cry and ran to my room slamming the door? Well, I started to cry because I was so triggered by that sound, I needed it to stop. I had to get away from that sound. I still want you to play and have fun, how do you think we can have lego time without triggering mom? Engage your child to help find some solutions, including them in the problem-solving aspect will show better results than saying, “you can’t play with your legos!” If after awhile Katie has not come up with it, you can pop in with, “Hey! I have a great idea! Why don’t you close your bedroom door when you are playing with Legos?” Children of all ages have the tendency to want to protect mom. Allowing them to feel they are contributing to the compromise will make it more effective. I think if you dictate the rule that your child may have the urge to resist and possibly use the opportunity to retaliate if they are being punished for a bad deed.

You may need to remind Katie that she needs to use an inside voice. When kids are playing, they can get a little too excited and start to scream. “Please, Katie, remember we need use our inside voice.”
I cannot stress this enough, make sure your child knows THEY are not the problem, it is the SOUND that triggers you, NOT your child. If an adult takes it personally, a child is about a thousand times more likely to feel like it is them. It is up to you as their parent to help them understand this is YOUR condition and you have no control over what triggers you. It is NOT THEIR FAULT!

Another thing to explain is that sometimes, mom needs a “time-out”. This is actually a very critical piece of the puzzle. If you are triggered, you need time to decompress or the reaction will escalate. Katie, sometimes when I am triggered, I just need a few minutes to myself. What do you think would be a good way for me to have a time-out? Again, allowing your child to participate in the conversation will allow them to feel as they are helping. Who knows? Maybe they can come up with a solution that can help you relax. If your child does not know that you are triggered, your behavior and actions can be interpreted as “mom is mad at me”. Just be honest with them. You are not shielding them from anything, you are preparing them for the real world. Do you really want your child believing that you hate them because they did something so petty as biting a fork?

There are so many mindful activities that can help relax you. Why not invite your child to join you? It can make some great bonding time with you while allowing you some time to just relax. Stick with simple activities that do not involve a lot of noise. What do you and your child like to do? Again, finding mindfulness activities that do not involve your triggers. Maybe go for a bike ride together? Can you play a board game or do a puzzle together? Maybe legos do not trigger you, why not start a lego project together?

These days parents tend to shield their children from some realities. It is a personal parenting decision, I am not trying to tell you how to parent. However, with a condition like Misophonia, I honestly believe that hiding it from your children could cause harm than good.

November 7, 2018 0 comment

Awareness

Calling Dr. Google

written by Vicki Sladowski

The sound of chewing drives you insane. I must be a heartless bitch, you think to yourself. Why? Why do I feel this way? One day you are sitting in front of your computer and decide to call on your trusty friend, Google. Beware…

As you already know, the internet has so much useful information. Just as it has helpful information, it also has harmful or not so accurate information. Let me just say- consider the source and do not believe everything you read. I am not trying to deter you from using Google, I am just saying that you need to be careful. The wrong information can be harmful.

Misophonia is a condition in which sounds have an extremely adverse reaction. When someone who has never heard about Misophonia does a Google search some typical searches may be:

Why does this sound annoy me?

Why does chewing make me angry?

Why am I bothered by clicking?

I just did a few of these searches and the term Misophonia popped immediately up. This is a relatively recent development. A few years ago, it took a more in-depth search to find the word Misophonia, a term that literally means hatred of sound. I find this term very misleading and inappropriate because hating a sound does not create the same reaction as being triggered by a sound. Some links will indicate it is a made-up condition and others will say it is a mental health issue. Misophonia suffers are also made out to be crazy, as if we do not feel crazy already. Am I right? Let me assure you, Misophonia IS a real condition and you are NOT crazy. (At least by being enraged by sounds). 😊

Once you find the term “Misophonia” the next logical step is to start to click on the various links because you are so desperate for relief. This is where you need to be careful. It is important to know that although there are current research teams working on Misophonia, there is not a current medication or treatment for this debilitating condition. You may stumble upon people claiming they can help, people recommending treatment such as exposure therapy. Let me stop right here and tell you- it does not work. Exposure to trigger sounds makes your tolerance to that trigger even worse. Why would you deliberately torment yourself by continually listening to someone chew or whistle? Your LIFE IS exposure therapy.

Suddenly you have the overwhelming need to see a doctor, for some reason having a medical professional confirm the diagnosis seems to be very important for sufferers. Possibly, the validation can negate the feelings of being crazy that most us have experienced. This can be very difficult. Most providers have never heard of Misophonia, it may be easier to say that there are only a select few medical professionals who have heard of it. Narrow that down to even fewer who have taken the time and dedication to research it. Some people immediately call their primary care physician and are very disappointed when they have never heard of Misophonia. If you think about it, many of us have seen various doctors over the years and have mentioned our repulsion of sounds, and those concerns have been ignored or brushed away. Even though this condition has a name, unless the provider is familiar with Misophonia it will continue to be dismissed. If you need an official diagnosis for work or school accommodations, it is best to skip the diagnosis. There is not a DSM code for Misophonia (A DSM code is a number that medical professionals use as a diagnosis code for billing and insurance purposes). Until Misophonia is in the DSM, it is going to be very hard to get medical recognition. If there is no DSM code, it must not be real? Wrong!

This is truly a case of the blind leading the blind. A doctor that is unfamiliar with the condition tends to treat it as a condition with similar symptoms. One misconception is that Misophonia is a mental illness. Although some Misophonic reactions may mirror mental illness it is not the same. Nowadays doctors are so prescription happy, it’s easier to write that prescription than to take the time to find out WHAT is wrong and WHY. Oh, this must be a symptom of anxiety, let me prescribe you this anxiety medication or this other medication for depression. Taking a medication for a condition that you do not suffer is the same thing as taking Tylenol for cancer or diabetes, it will not do you any good. Just because it is prescribed by a doctor does not mean it is the right method of treatment. Taking mental health medication when you do not have a mental illness can cause you to display symptoms of depression, etc. that you have never previously experienced. After several years of various medications, my doctor finally realized that my anxiety is all auditory-related. Hello! Isn’t this what I have been saying all along? The MD at the end of the credentials is just a title, it does not by any means equate to “all knowing”.

There seems to be another hot “treatment” being talked about called Functional Neurology. Please proceed with caution. Although I tend to believe “give anything a try” in hopes for some success there are several things to take into consideration. Finances! I am very apprehensive of any provider that does not accept insurance. Many FN’s are cash only. I wonder why? Do you really think they are in it to HELP? Or are they just trying to make some serious cash? Although there have been many suffers report some improvement, for each person with positives, there are also people with negative stories that they may or may not share. If you are willing to spend thousands of dollars out of pocket without guarantees, that is your choice. I also must wonder if it’s is the honeymoon effect? You want to believe something works so it does, for a while anyway. Prepare for the potential to crash and burn. I am not knocking this treatment, as there is not enough medical evidence to prove or disprove it. With Misophonia, what works well for one sufferer can make it worse for another. One person had a positive experience and suddenly many others are immediately jumping aboard the bandwagon, travelling cross-country spending thousands of dollars in travel and treatment in hopes for relief. It looked like a true cult following.

I used my friend, Dr Google and found a local Functional Neurologist who accepted my health insurance, so I opted to give it a try. Why not? It is not going to cost me anything, I do not have to travel. I did not show any improvement with my Misophonia, and I was very fortunate that it did not get any worse. Others were not so lucky. Would I call it a total waste? No, because I did show improvement in other areas. Regardless, I would not discourage the treatment, just do your research and decide for yourself if this is an option for you.

Many articles you will read are written by individuals without firsthand knowledge of Misophonia. How can you talk about something that you have no knowledge based on what you are reading on the internet? Do they live with someone who suffers? What makes them qualified to offer advice? Food for thought.

Marijuana and/or CBD oil is another “trend”. Personally, this is not something that I am willing to try based on my own beliefs. (To each his own) Some people swear by it, others say it does not help. A perfect example of what I am talking about with knowing your source. I have read so many comments and testimonials on the use of these substances, but I cannot tell you if they help or they don’t. Are people using it as an excuse to use marijuana? I don’t know. Based on my knowledge I know that marijuana usage slows response times, therefore it makes complete sense that your brain would have a slower reaction to the triggers. A slower response I understand, I cannot see that it would eliminate the reaction.

When I write my stories, they are based on my life and experiences, the life of someone who suffers from Misophonia. I share my experiences because I know many sufferers can relate, I want to help raise awareness for Misophonia. I also do not want people to be misled into thinking that they can be treated with medications or other treatments. Feel free to Google all you want but take it all with a grain of salt. It is your well-being that is at stake.

November 5, 2018 0 comment

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