- 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.
Very recently, I realized how afraid/anxious I am of certain things:
- 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.
One of the most asked questions about misophonia that I’ve seen has been whether or not marijuana, or weed, can help sufferers with misophonia. I’ll start this article by letting people know that I am Canadian. Weed was legalized here officially, for recreational use, on October 17th. In the past week I tried sativa, indica, and hybrid strains. I’d like to first mention that there is no scientific evidence that weed can help misophonia patients. You should not try a treatment that has not been tested. However, if you live somewhere that weed has been legalized (or your doctor believes it could have benefits), you might want to read this article first.
In my experience, marijuana does not help alleviate misophonia symptoms.
When I smoke (or ingest marijuana through edibles) I still hear and see triggers. I am still anxious about them, and I still have the “trigger” response. Sometimes I will recover faster, but in some instances I found that weed made the triggers worse. I am still thinking of one of the triggers that happened almost a week ago. I found that weed made me focus a little too much on triggers and I can say that even in the best case scenario, weed was not making my triggers better.
You should never take a substance for a disorder or test without talking to your doctor. While there currently is no research on how marijuana will impact misophonia, we may see more research come forward about anxiety. For myself, misophonia has not shown any impact on misophonia other than having triggers be more noticeable or being slightly less anxious.
Coping with misophonia is about more than just taking a substance. Until research finds a treatment we are going to have to look at a plethora of coping mechanisms. Instead of trying substances, I recommend that sufferers look into coping tips and sensory diets.
I am by no means demonizing marijuana or coming from a place where I believe that the substance is all bad, however, there is just no research (or any evidence beyond some anecdotal accounts) that weed is going to be a treatment for misophonia. While this may be disheartening for some sufferers, I think we should instead focus on the research that is happening and help spread the word that science is gaining an understanding of misophonia.
Like a ghost, the memory of finger-tapping has become my own personal poltergeist. I feel jolted just as one would if the doors were slamming – if the lights were erratically going on and off.
I lie in bed and I replay each finger tap. I don’t want to think about it – but like bullets from a gun I replay every second. Bump. Bump. The ferocity echoes through my brain – the noise, god the noise – it’s just as loud as it was in person.
At twenty-four years old, I should be living every moment of my life to the fullest. I should be partying, making mistakes, and spending long wistful nights walking barefoot in the park. I should be kissing strangers in alleyways, because I’m young and mistakes are part of what makes life worth living. I should be drinking a little too much, and stumbling home just before the sun rises. I have a desire to do these things. I want to be young and careless. I want to go out for the night without prior planning, and I want to live my life to the fullest. Instead, I am trapped. I am locked into a world that is dictated by a disorder that suffocates my lust for life. Every decision is marred by its touch. I have gone to clubs, and I have had some fun, but I am increasingly losing my ability to be young and carefree. Instead, I am young and restless.
I have Misophonia. While the internet is busy classifying us as a strange, weird, or violent disorder, the truth is a little more depressing. It is true that many of us are upset by chewing – but this disorder goes much further than frustration when our family members crunch down on potato chips. Many of us offer struggle from sensory problems similar to that of Sensory Processing Disorder. This disorder is more than an aversion to sounds – it is an all-encompassing prison.
The strangest part is that when there are no sounds, I am normal. It is as though the disorder has evaporated. I’m still myself. I will be going about my life like everybody else. I walk like a person that has never been troubled. Everything is fine. Until it isn’t.
Imagine for a second that you are trapped in a cave with a dripping faucet. This faucet would continue, and eventually become torture. For those of us with Misophonia, we are immediately trapped in the cave. Because of our amygdala, we do not get used to sounds. Instead, we are bombarded by a fight flight response. We are constantly sick, anxious, and living in a world where our bodies are sensory taxed. Much deeper than simple anger, we are often isolated from our lives. There is no cure for Misophonia, and increased exposure can make the disorder worse. Because of this, and the cycle of pain and anxiety, we are more likely to avoid unnecessary social events. Further than that, if I were to ‘push myself’ I am likely to end up with a severe migraine.
The normal life of a 24-year-old is something I’m not going to have. It’s taken some time to adjust to the idea that, unless the research of the Misophonia And Emotion Regulation Program of Duke is successful, I may be living with this severe condition for much of my adult life. Truth be told, I’m terrified. The life of a young adult with Misophonia is a confusing one. I have not been out, or partied, in over a year. Since social groups are often how we define our youth – I have had to find interests that are solitary. I haven’t been on a date in a year either. As the disorder worsens, my interests have been chipped away one by one – the memory of events, and the risk of them repeating, has been the deciding factor in many of my activities.
If I were to go on a date, it would have to be something small and solitary. Movie theatres, due to the popcorn, leg-shaking and loud noises, are simply impossible. Restaurants also have chewing, and I generally avoid any situation where people are sitting down. Sitting in a car can be hard, if the person rests their arm on the window sill or taps their fingers on the car wheel. I cannot control my fight flight reaction, and it is hard to explain to others why it is happening when there are little resources and awareness to point them to – I am exasperated as I try to explain that it is not them I am mad at, but the sound itself is causing my brain to go intro over-drive and short circuit. Sadly, it has become easier to not explain at all. To simply stay home, and control what’s going to happen.
A day for me usually begins with the night. During normal daytime hours there are honking horns, lawn-mowers, buzzing motors, screaming children, and persons that inevitably may show up at the door. Instead, I have opted for a life that takes place during the hours of 8PM and 10AM. There are still noises, even in this sheltered life. Even in a world that is considered rural compared to cities. No days are without triggers, and as these triggers mount, I become sick. After triggers, my muscles tense so tight that I have back pain, I become nauseated and dizzy. If I do not remove myself from the situation, these symptoms become worse. The longest migraine from Misophonia that I have had was 7 days long. When dealing with reactions this strong, avoidance becomes the main tool in your arsenal.
The world of Misophonia and over-responsivity means that some clothes are too tight, lights are far too bright, and we are more likely to get migraines. Scent-allergies are common, and perfume can quickly make us sick. Visuals can cause the fight/flight response too. Effectively, we are being threatened by every day occurrences at a level that can be hard to explain – we are also attacked by media that is convinced we are over-reacting or are a “think-piece”. After-all, it is strange and unruly to think that the regular world could be causing people so much distress. Unfortunately, I am here to tell you that this condition is very real.
The life of a young adult with Misophonia is the life of a girl who was making As and Bs in University her first term – then, as triggers grew, attendance dropped. Eventually, to continue at all, I had to switch to online school. I became so suffocated by the triggers, that I could not hear what was going on in the classroom. To even survive the class, I would have to distract myself – and nothing was enough to distract from pen clicking, from legs shaking and other students that were simply trying to learn. For me, I was trying to survive. Like many other young adult experiences, the college-life was another that I had to step back from. While I am still finishing my degree online, it is taking much longer. The social connection and wonderful memories that accompanied my first year, have been replaced by my bedroom and textbooks. While I love learning, there is a loss that has taken place.
Misophonia is not chewing rage, sound rage, or ‘murderous rage’. Misophonia is loneliness. It is the loss of social relationships and the decaying of what we could have been, or what we used to be. Misophonia is a daily fight and struggle. We must remain hopeful despite every life change, despite the sickness and despite being trapped in fight-flight much of our days. Misophonia is resilience, because if we can survive this and still accomplish some of our goals, we have fought the toughest battles of all – the battle against our own brains.
I stay strong because I support the research at Duke. I believe that the IMRN (International Misophonia Research Network) is working diligently to find solutions. I stay strong, because I have to be, but I am not an ordinary Young Adult. The hardest battle I am fighting is against the life I perceived. Instead, I am cutting out a life that fits my needs. My life may not be that of an ordinary young adult, but that doesn’t mean I’m not going to have hope.
Whistling in public should be outlawed and so should lawnmowers, chewing gum, and pretty much anything else that gets in your face. Okay, this is never going to happen. But, I have a reason that has nothing to do with simply being annoyed with people who have poor manners – like those that chew like cows – I have Misophonia. I’ve found myself longing for the days where chewing gum was outlawed and sitting still was considered the best possible behaviour. Okay, maybe not that far – I’m terrible at sitting in one spot for too long – but you get the picture.
Misophonia is more than just hatred of sound (despite the name, yeah, I don’t like it either), it’s also more than just intolerance, and it’s way past annoyance. For sufferers of Misophonia, sounds that disappear into the background for others actually activate the fight/flight/freeze part of the brain, and our haywire amygdala decides that your apple is actually a machete that has been tasked with dismantling our sanity bite by bite.
While Misophonia has been used as a meme, it’s kind of the new “I totally have OCD”, for those suffering with the disorder, it can be pretty devastating. Imagine if you could never go to restaurants, or if going out to bars and clubs were far too overwhelming. Then, imagine if you also had trouble watching television because every commercial has been created by sadists that want nothing more than to waterboard you until you spend every dollar on their products? Movie theatres? You mean popcorn crunching hellpits? That’ll be a no from me too. Socializing with this disorder is pretty much impossible.
I can’t come up with a way to express how much Misophonia impacts me other than simply saying that sounds (and many visuals) are fucking torture. Living with Misophonia and trying to explain it to people who think I’m just “super sensitive” and need to “get over it” makes it even worse. Listen, if I could get over Misophonia – I would. I support research whenever I can, especially the amazing work of the International Misophonia Research Network – the studies at Newcastle, Duke, and the finished study at NYU. I’m completely invested in finding a cure for this disaster of a disorder. Except, for the now, there isn’t one. No amount of fairy oil is going to make me stop crying when some old man decides that jingling his keys, change, and wind chimes (they must have wind chimes in their pockets, why are they so loud) is of the utmost importance.
It’s not the public’s fault for knowing nothing about Misophonia. Hell, the information on WebMD, Wikipedia, and pretty much every other “reliable” (super unreliable but for some reason trusted) source is flat-out wrong. Many of these pages were written before there was even literature on Misophonia, but you know, okay then. The research itself is starting to get better, but the world is oblivious. If you’re interested in the research on this condition, you can check out the recently published Literature Review (https://www.frontiersin.org/articles/10.3389/fnins.2018.00036/full#h12 ).
Misophonia exists in this weird place where many people don’t even know what they’re suffering with. We might think we’re crazy when sounds start to drive us up the wall. We might think we’re super weird when whistling brings us to tears (it happens more than you think). Hell, we might start fantasising about a Fallout shelter and designing every aspect inside our heads to the point we’ve hit obsession. I know I did, until I realized that bunkers need fans, and the spinning blades of fans are a super bad visual trigger. Guess that idea is out.
For now, my only hope seems to be research. Hopefully, within the next few years we can figure out what the hell is going on and find some relief. For now, I’m just fucking sick of sounds.