Category:

Coping

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

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 0 comment

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.

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 1 comment

Coping

Take a Leap

written by Sharon Mousel

Very recently, I realized how afraid/anxious I am of certain things:

Driving
Making mistakes
Getting yelled at

And it wasn’t until yesterday (November 5, 2018) that I am allowing those things to hold me back from progressing in life. Hilariously enough, it hasn’t been my misophonia. Not really. Yes, it’s hindering and I can’t do certain things–at all or not for long/very often–but I find myself focusing on other things that have been hindering me.

For instance, driving. I am avoiding learning how like the plague. I don’t want to hurt anyone, or God forbid kill anyone, or experience someone else hurting me (or whoever else that might be in the car with me). It makes me terribly anxious, and I don’t want other people that might be teaching me getting mad at me for not doing something correctly.

Whew. Just writing that makes me anxious.

And lastly, I don’t want to drive because I don’t know how I’ll react to hearing a trigger sound in the car. Will I jerk the wheel? Will I drive more recklessly to get to my destination faster so I can escape? So, misophonia does play a part in this, but not so much in the other things. Misophonia is ever present, but I’ve experienced it at a lesser degree in most areas of my life.

I joined a group at my local church, and I won’t bore you with the details, but basically we dissect certain scripture readings and apply them to our own life. We also look at certain passages we don’t understand and figure out what it means. But we were talking about faith, and I don’t remember what led me to think of my driving anxiety, but I thought about it and someone said, “Take a leap of faith.”

A leap of faith. Huh.

I started remembering all the times I went to a social gathering or other event despite my brain telling me not to because I might get triggered. Those were leaps of faith. Huge ones. It’s because of those that I think I’m better able to manage my misophonia. I say manage because I’ve stopped trying to fight it, because that’s a losing battle. I still get frustrated of course. I still have my really bad days where the only thing I’m feeling is rage, anger and wanting to hide in a soundproof hole for eternity. But after those moments, I dust myself off (after some recovery) and get back out there.

And with the driving, that’s what I need to do. Take a leap of faith. And no matter how many times I get anxious, or if someone’s teaching me and they make me more anxious by doing something that sets me off, I dust myself off and try again. I should learn from that experience and the next time I get in the car, try something that would cause me less stress/anxiety. Maybe get a new teacher. Someone that is empowering and won’t get mad at me for making mistakes. Someone that will tell me what I did wrong and how to fix them without getting mad. Someone that understands I have misophonia and can try to be as accommodating as possible.

If I don’t take that leap of faith, I’ll be denying myself so many job opportunities. As a criminal justice major, there are a lot of jobs in that field that require me to drive. Even if I didn’t have my degree, many other jobs require that I have a driver’s license. I’ve looked at many jobs I’m qualified for and become disheartened when I see I need to drive. You get my point. It’s incredibly frustrating for me, and as afraid as I am, I need to overcome it. Manage it. Just like I do with my misophonia everyday.

There are a lot of other things I won’t be able to do if I can’t drive, as well as things I will be able to do once I can: If I can’t drive, I won’t be able to go anywhere on my own. I won’t be able to leave a potentially anxiety-inducing event whenever I want. But if I can, I won’t have to bother anyone to give me a ride. I could also drive alone. I could set my own “car rules”, like no eating in the car and no radio.

There are good things about driving. I am capable of it. I just need to focus on the good things and just…take that leap.

November 7, 2018 3 comments

Coping Sensory Diet

Trampolines and Sensory Processing Disorder

written by Elizabeth

Whether or not misophonia is related to SPD requires more research for definitive answers. However, OTs speculate that a sensory diet, and therefore vestibular input, could be helpful for misophonia sufferers.

SPD, or Sensory Processing Disorder, is a neurophysiological condition in which sensory input from one’s environment or one’s own body is received or interpreted poorly and thus results in inappropriate responses. This condition can affect anyone. It is estimated that 5-16% of children show signs of SPD. Toddlers, adolescents, teens, and adults with SPD struggle with vestibular input. They often seek activities and movement that exercise the vestibular system so as to “feed” their sensory diet and stimulate their inner ear.

An exercise that a lot of children find very stimulating is jumping on the trampoline. This kind of exercise not only benefits those with SPD physically by strengthening muscles and joints, but it has shown to improve social skills in group jumping exercises as well. Because jumping is more than just a one motion, children and adults are given the opportunity to exercise moving patterns and work on praxis challenges. This, in turn, will improve their balance, gross motor coordination, and trunk endurance.

Trampolines help children to understand and fully feel where their bodies are in space. Smaller trampolines especially give a sense of personal space and freedom to use that space how they choose without external disruption, much like their own personal island. This awareness of personal space can boost self-confidence and improve their overall social health. Jumping can also have calming affects for a child who is overly upset or angry. Repetitive motions are often very soothing and by honing their attention towards jumping, an opportunity arises for them to step away from negative emotions and relax.

Organized sports such as kickball or tag, for example, can sometimes be an overload or even not stimulating enough for children with Sensory Processing Disorder. It is typical for persons with SPD to be unmotivated to play those sorts of games. This is where trampoline’s shine. Children can express themselves freely in the comfort and safety of their aforementioned personal islands. They do as they please, move how they want, on their oases.

Trampolines are an excellent outdoor and in-home activity. Small, personal trampolines can be purchased to easily fit in any home or apartment. Owning an indoor trampoline negates the issue of bad weather so that children can jump all year long. Some trampolines are even made with bungee cords instead of metal springs. Bungee trampolines are relatively silent and much less disruptive. In this case, noise becomes less of a factor and early morning or late night jumping is no longer a problem. Morning jumping, especially, has been found to provoke so much mental stimulation and arousal that children and adults with SPD are able to maintain more focus later in the day because of it.

Any safe activity that a child finds fun and engaging is going to benefit them in some way, whether it’s physically, socially, or mentally. Trampolines have so many great benefits. They strengthen muscles and joints, improve balance and coordination, and provide an outlet for emotions. Most importantly, trampolines can provide a sense of comfort and a source of fun and stimulation for children of all ages with SPD.

November 5, 2018 1 comment

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