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Awareness

Living With Migraines and Misophonia

written by Shaylynn H.

How old were you when you first started to experience migraine symptoms?
When I first started to experience migraine symptoms I was 20 years old.
How long did you experience symptoms before you were officially diagnosed?
I was diagnosed shortly after having regular symptoms for migraines.
How many doctors did you have to see before getting diagnosed? Were your symptoms ever misdiagnosed as something else?
I have a wonderful GP. He was able to diagnose me. I never had to see or another doctor or be misdiagnosed. However, there is still some confusion as to whether or not my migraines are a result (and triggered by) my sensory disorder Misophonia https://www.misophoniainternational.com/what-is-misophonia/ ), which is much like SPD. I am over-responsive to sights, sound, light, etc normally, and I find an increase in stimuli and a higher fight/flight threshold has made my migraines more severe. Dr. Lucy Miller’s research article from 2013 explains the link between SPD and Migraines (source: http://journals.sagepub.com/doi/abs/10.1177/1362361313489377 ) More research is needed to understand the relationship (if any) between migraines and Misophonia.
How important is it to find a doctor who you can work with closely? Did any doctor make a particular difference for you when it came to understanding your migraines and treating them?
In order to receive adequate and effective treatment, it’s important that patients are able to have a working relationship with their doctor. If you are unable to express your concerns and find solutions for your particular body or situation, it is unlikely that the care will be meaningful. My doctor was able to work with me and provide suggestions for my care. He was also able to prescribe medications that would match with my other health concerns. It’s important one listens to their doctor because any other ailments may change your course of action.
What lifestyle changes have you made due to your migraines? Are there any things (foods, scents, etc.) or activities you avoid or seek out?
Because I also have a sensory disorder, which has similar attributes to migraines (and causes it), I have had to make numerous life changes. For the most part, I try to eat organic foods, limit sugar and processed foods, and only use beauty products that are all-natural with no harsh chemicals. I never waiver on the cleaning products, beauty products, etc, but food and drink seems to be something that is a difficult habit to break.
Interestingly, I didn’t have migraines for months, but lately have been drinking more soda and eating chocolate – I had a migraine this week. So, it’s definitely important to cut these things out for me.
Have you changed anything in your home to accommodate your migraines (i.e. darkened your bedroom, added stoppers to keep drawers from slamming, use a humidifier or dehumidifier or air purifier, etc.)
I have a Himalayan salt lamp because I find the light it emits is very calming. Due to my sensory difficulties, including migraines, I have blocked off my door from sounds. I have thick dark curtains, and am mindful that the room stays dark. I sleep with earplugs and an eye-mask at all times. I have an essential oil infuser but I must be careful because certain scents can actually trigger migraines.
Have you tried any holistic remedies (i.e. acupuncture, biofeedback) to treat your migraine? If so, how well have they worked?
While I’d be open to try acupuncture, I’m really not for things like biofeedback because they’re usually toted by non-doctors and advertised as miracle cures. While I’m totally fine with natural alternatives, I’d never do something that’s pretty much advertised as a miracle cure. Maybe this is because I’ve seen so many people be lied to about false cures for Misophonia and SPD (source for this claim: https://www.huffingtonpost.com/entry/i-have-misophonia-and-were-being-exploited_us_5789f0a3e4b0cbf01e9fd61b.) I like to err on the side of caution!
Have you made any effort to eliminate stress due to your migraines? If so, what have you done?
My Misophonia causes an endless stream of fight/flight/freeze. I also have a generalized anxiety disorder. At this point, managing stress is basically a moot point – I can try, but it will never work.
Have your migraines had any effect on your ability to work? How do you manage your migraines while on the job?
The longest migraine I ever had was 7 days. Luckily for me, as an advocate, I work from home and can choose to do more work the next week, etc. However, this can be frustrating because sometimes there is a lot more I’d like to get done.
Have your migraines had any effect on your social life? How do you communicate to friends and family about your migraines and why they may sometimes require you to cancel plans?
Migraines have made me cancel plans, but nothing more than the fear of getting a migraine from the sights/sounds that might happen and trigger my Misophonia. I have stopped going out entirely, so it has become severe enough there is no social life to ruin.
Have there been any silver linings to having migraines? Maybe you joined a support or advocacy group that helped you find friends or a sense of purpose? Maybe they made you change careers and you found a new passion you loved? Maybe they inspired a new hobby or creative pursuit?
I’d like to be that person that says, “yes! There’s a silver lining to everything” but that wouldn’t be true for me. I can’t think of anything positive for the migraines – perhaps for me, it is because it is so closely intertwined to my sensory disorder and Misophonia. I would trade everything I have to be able to freely engage with people, and interact with the world without migraines or sensory sensitivities.
What would you say to someone who has just been diagnosed with migraine to help them based on your experience?
I am 100% for holistic and natural changes to your life such as diet, exercise, and limiting all chemicals. But, go to your doctor. Your doctor knows your sensitivities and history and can even give you medicine that can help. Since Misophonia has no treatment, I have found some relief by preventing/treating migraines. For me, Beta blockers can stop a migraine in its tracks. We are so lucky that research for migraines has provided possible treatment – don’t be afraid to use it!
More research is necessary to determine if migraines and misophonia are interrelated.

November 12, 2018 0 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

Awareness

How It Feels To Be Asked To Stop Making Sounds

written by Shaylynn H.

As a person with misophonia, I spend a lot of my time worried about the noises that other people make. Today, I had an experience that made me wake up and realize that none of us are perfect when it comes to noise. I received a visit from my downstairs neighbour asking me if I could stop walking so loudly. My immediate reaction was shock. But, I realized something after being the one who was yelled at (not actual yelling, haha) for their “loud walking”.

What I realized was that everybody who is asked to stop doing something is going to take it as a personal attack. At first I was really offended and I felt as though I had to walk on eggshells in my own home. It was disheartening and I really felt bad. I didn’t want to be responsible for making the life of my neighbour (who has cancer by the way) miserable. I kind of felt absolutely horrible. This made me realize that for the past few years, whenever I have complained about sounds, actions, or anything about misophonia to friend, family (and strangers) that they might have been taking it personally. This really concerned me because I never want to make people feel bad, even though my disorder is the problem.

I think misophonia sufferers need to realize that to some degree, what we’re asking of people can be hard for them. It isn’t easy being asked to change your behaviour for somebody else. Of course, if we care about somebody we are usually willing to accommodate, but people triggering you are likely not doing it on purpose. Often times we don’t realize that we clear our throats or walk “too loud”.

Misophonia sufferers should realize that the people making accommodations for them are making a sacrifice. They are sacrificing their autonomy so that we can be comfortable, and that’s an absolutely wonderful thing. You should thank this person and try not to snap at them when they fail. Instead, warmly remind them that it’s a trigger, and thank them for being so kind as helping you. Let’s not treat this disorder as an excuse to be mean to each other. Unless the person is triggering you on purpose to use it against you, then you should generally consider the efforts that they do make, instead of those few times where they fall short.

We’re all in this together. Also… does anybody know how you can stop walking too loud?

October 18, 2018 3 comments

Awareness

6 Reasons Misophonia Isn’t Chewing Rage

written by Shaylynn H.

For those that don’t know, Misophonia is (most-likely) a neurologically based disorder that causes an aversive reaction to audial and visual stimuli, and it’s not chewing rage. In laymen’s terms this means that noises like tapping, whistling, crunching and chewing can cause a fight/flight/freeze reaction. There is no cure or treatment. Sometimes the press represents us as angry people that are upset by chewing. This may be true for some of us but it’s not the entire story…

1. Misophonia sufferers have visual triggers too.

It’s not just sounds that cause an aversive, rage-induced reaction. Many of us suffer the same fight/flight/freeze from visual stimuli. This can include tapping, swaying, and other movements/sights.

2. The term “chewing rage” is offensive.

Instead of talking about the inability of persons with Misophonia to filter out audial and visual stimuli, the term “chewing rage” makes a mockery of our disorder. In a world of stigma- this merely adds to the problem.

3. Saying “chewing rage” makes the chewing sound like the problem.

We need to stop blaming the trigger for the disorder. Since different persons have different triggers we need to focus on the brain, and not the person making the “offending” noise.

4. “Chewing rage” is too negative.

We don’t hate sounds, we are merely experiencing an inability to filter them out, and “habituate”. The anger comes from our discomfort, but it is not the entire problem.

5. Many sufferers of Misophonia experience a myriad of triggers, not just “chewing rage”.

These can range from chewing, tapping, breathing, and snoring to more obscure sounds. Not all persons are triggered by the same. For example, one person may be triggered by chewing and another may love going out to eat with friends.

6. Terms like “chewing rage” cheapen our suffering.

We need to stop labeling disorders with silly names. Misophonia is not merely a rage disorder. We are people that are suffering from a brain condition.

Does chewing bother you? You may have a newly recognized neurological condition, called Misophonia. This condition has been called a few other things. I’m not going to list them all. Mostly because there’s not enough press, science, or research to back them up. However, “chewing rage” and “sound rage” are some of the most interesting. A lot of people have asked me, “why does chewing bother me?” I wish the answer was simple. Perhaps, one day, our researchers will be able to answer this in greater detail. For now, I can tell you that you are certainly not alone in this phenomenon. The literature review on misophonia shows the direction for research and explains the research already done on the disorder. You can read more here.

Share this with people who keep calling misophonia “chewing rage” and let’s change the conversation!

October 3, 2018 0 comment

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