misophonia overwhelming

The Loud, Overwhelming World of Misophonia

For those that don’t know, Misophonia is (most-likely) a neurologically based disorder that causes an aversive reaction to audial and visual stimuli. 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. A disorder callously dubbed “Sound Rage” by media, misophonia has received marginal attention. Most stories follow a similar rhetoric. A person is so “enraged” by sounds that their normal day-to-day life is impaired. A special focus has been on “chewing rage.” Media has marveled at the thought of an apple, popcorn, or crunchy food causing a severe aversive reaction. Reporters are not entirely to blame for this. Sufferers can become confused too. This can be attributed to information that has circulated and not been vetted. It could even be attributed to the name itself, meaning “hatred of sound.” Though, we don’t really hate sound. Actually, some of us may be bothered by sensations entirely out of the realm of auditory. But, spreading like wild-fire, the concept of “sound rage” has mesmerized the curious, and added more paralysis to an advocacy world already crippled by lack of public tolerance and belief. As an advocate, I feel it is part of my job to help people to understand the disorder. I do not necessarily blame the media or the public for their lack of understanding ― after all, science is only beginning to understand the condition. Sufferers of Misophonia (which may be overlapped with SPD SOR (sensory over-responsivity), commonly report several “triggers” that have nothing to do with sound. In fact, most of the senses seem to be incorporated. Second to auditory stimuli, visuals have been reported as highly intolerable. This could be swaying motions, tapping (even without sound), or legs shaking. While some of these may have a sound attribution, it is not necessarily always the case. While there may be more senses involved, the following are widely reported. Sound: Sound triggers are widespread and often repetitive. Tapping, chewing, breathing, coughing, snoring, clicking, jingling, sirens are all common triggers. Visual: Can be related to sounds, but not always. Tapping, swaying, leg bouncing, foot shaking. Touch: Often under-reported, touch symptoms can feel almost creepy crawly. Synthetic fibers, nylon, denim, wet fabrics, porous materials, and often velvet. Smell: May be mistaken for “scent allergies,” scent triggers commonly cause a headache or nausea. Often brought on by chemical-products like perfume, Axe body spray, cleaners, fabric softeners, lavender, but they can also include natural products. When living with a sensory disorder, especially misophonia, there is a lot more to worry about than just sounds. While the sounds (and visuals) are most life-altering, that does not mean that the other symptoms are not important. An over abundance of these triggers has been known to cause migraines, fatigue, and nausea. The sensory system is a delicate balance, that few aside from occupational therapists understand. Susan Nesbit, OT, advises persons with misophonia, “When possible, modify your environment to reduce the frequency  (number), the intensity (strength), and the duration (length of time) of the triggers. Modifying the environment is helpful for persons with misophonia and/or SPD.” Education is the most powerful tool when it comes to understanding sensory disorders like misophonia. More research is needed, and especially, more understanding. As the scientific community becomes more aware of the sensory world, it is important that advocates are reaching out and bridging the gap in understanding. Misophonia is not only NOT sound rage, it is much more encompassing.   Misophonia is the rope that binds me.   You hold me back and toss me into a dark basement. You have kidnapped me and you continue to hold me. There is no Stockholm Syndrome. If I could escape you I would never come back. I would not wish for this on my worst enemy. If I didn’t have you I could sit in a classroom. I could attend family meals and I could live my life to the fullest. If I didn’t have you, I wouldn’t feel trapped in my apartment. I wouldn’t feel concerned that I’m alone and unhappy. Some days I feel as though I have given up a lot for this disorder. I spend most of my time alone. I spend my days wondering what life wouldn’t be like without this disorder. I am not unhappy, not entirely. However, today on a hot and beautiful day I could not swim at the beach because there were too many others. I feel uncomfortable in my own skin, brain, and body. Not only do I suffer from audial triggers, I also suffer from visual ― I feel as though I am trapped constantly. The world around me is a sharp, bitter, devastating blow. Misophonia means the world around me is a sharp, bitter, devastating blow.   Misophonia does not have to take over my life. There are things that I can do to make it easier on myself. But no matter what happens there is going to be a sacrifice. This is why I fight so vehemently for awareness. I know that misophonia is not always sunshine and roses. Misophonia is a troublesome disorder. My sensory issues go far beyond the grasp of sights and sounds. I feel it every time I touch water that is too hot or cold. I feel it when velvet touches my skin and makes me cringe. If I step out into the hot summer heat after my blissfully air-conditioned atmosphere I can feel the hold on my body. All of my senses are subject to sensory overload and under-load. If I do too much I feel my body pull out from under me. My back crumbles under the pressure. I wish I had never heard of misophonia. I have spent the past few months of my life fighting for a cure. I have been fighting with everything I have. Many days I have spent 16-20 hours in a row, at a computer, trying to help with advocacy for this condition. I am not only doing this for the other sufferers, I am doing it because I have little choice. If misophonia is never cured, I will have to live with it for the rest of my life, and I am not sure that I can handle the implications of that revelation. This disorder has broken me in ways that I never thought possible. I never […]

misophonia coping tips

Misophonia Coping Tips

While there is currently no cure for misophonia. It is important to note that coping mechanisms can be very helpful. We communicate directly with misophonia researchers to ensure that there will be a cure sooner rather than later. However, in the meantime there are some great things you can do to help keep yourself calm. Misophonia coping tips can help you live a meaningful life, despite your condition. First, Dr. Stephen Porges (an esteemed researcher) believes that misophonia triggers become unbearable and continue to be so even when we think we are “calm”. Because of this, it is unlikely that CBT, or any other “cognitive” therapy will work. You can listen to the full podcast to learn more. I know this can sound treacherous when trying to find a treatment – but I assure you, it is not worth the risk. Duke University asserts that there is no treatment, and that trying these un-vetted “cures” could actually make the disorder worse. There are some misophonia coping tips that can be helpful. Try a sensory diet that has been developed for sensory processing disorder. The SPD Foundation believes there may be a connection between Misophonia and SPD. If this is true, a sensory diet (which is a set program of activities) can help connect the brain and muscles and this type of program goes along with the work of Dr. Stephen Porges. You can find a sample of a sensory diet, written by an OT, via this link. Find professionals that understand, or at least are empathetic to your disorder. Misophonia Providers works in association with the Misophonia International Research Network and is a growing list of professionals across the US that understand the disorder. While the list is small, it is always growing. While there is no diagnostic code for misophonia, you can ask your therapist or doctor to help you find accommodation. A well written letter could help you to wear earplugs or headphones in class or at work, have a desk that is separated from others, and find meaningful ways to help you cope. This sample letter can be printed and brought to your therapist as an idea. Do not be too hard on yourself. You do have a real condition and while it is not yet well-received by the world, it is okay that you are unable to attend every function. By accepting yourself, you may be able to cope better. Have meaningful conversations with family and friends to garner their support. If a person loves you, they should not want to hurt you. Share resources with them so that they understand you are not lying, and hopefully, they will come to terms with your disorder. Use resources like Misophonia Awareness to help advocate. Consider helping to fund-raise for research, or donate. The more people understand the disorder, the better equipped you can become for yourself. In the world of research it is interesting to note that Dr. Joseph LeDoux, a top Neuroscientist, is looking into the possibility of  “memory reconsolidation therapy”. This, in the future could be life-changing for sufferers. Do you have tips? Add them to the comments! In this video, I’m going to share 5 Tips for Misophonia Coping that I personally use on a day to day basis. I apologize for the sound quality of some of these videos. While my condenser microphone and tripod (both at once, yes) continue to be jerks… we’re going to have a bit of a rocky ride. I hope to have something a little more formal set up within the next few months. Misophonia can be hard to cope with. We all know that. But, how do I cope? This video summarizes my misophonia coping tips. I didn’t mention everything, but I’ve found these steps to be very helpful. Earplugs paired with music Adjusting my position in a room to ensure I am not triggered (or where I sit on a bus)  Prepare in advance for intimate experiences that will have triggers (such as family dinners). You should explain to family/friends about the disorder (but don’t do so when triggered)  Manage stress (unwind, watch movies, take baths)  Leave the situation if you can I fully understand that not everyone can react to situations in the same way. I encourage you to stand up for your health and find out what helps you. Once you’ve discovered this, you should advocate for yourself and try to find the best balance you can. In order to deal with this disorder, we’ve got to have our own backs. These misophonia coping tips are only meant to help you consider your options. You should talk to a medical professional about any lifestyle changes you may want to make. Have a question? Please feel free to ask, or check out our forums!

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