Taking the first steps to getting help

Today I made a big step toward getting help for my misophonia. I made an appointment for a consultation with a woman in Portland, Oregon, who specializes in audiology disorders, including tinnitus, hyperacusis and misoponia.

I left a message with the doctor on Friday and she called me while at work on Monday. I left my desk and took the call, making sure I went some place where nobody could hear what I was talking about. She told me that the consultation costs $75. I said yes.

During the consultation, she said she will determine whether I have misophonia (no question there!) and then talk about the services she provides. I’m not trying to get my hopes up because I know that there is no known cure for this condition. But if I can learn any sort of coping strategies that might help me manage my misophonia, I’d say it’s worth $75 to learn about them.

I had always thought about eventually seeking help for misophonia, but something I learned about my family motivated me to actually do it. I recently found out that an older relative of mine committed suicide and referenced his struggle with tinnitus — or ringing in the ears — in his suicide note. That really frightened me, and I want to make sure I never get to such a dark place.

My appointment is not for a few weeks, but I will post about how the appointment went after I go.

Speaking of follow up posts, I wrote a post a while back saying I would test out musicians earplugs and how they work with blocking trigger noises. I got them in the mail and brought them to work to test them out. I particularly needed ear plugs at my office because of a woman who constantly chewed and popped her gum.

I have relied on disposable soft earplugs for some time, but it is hard to know when someone at work is trying to get my attention. And when I take an earplug out in order to talk to them, they either gave me weird looks or ask me why I was wearing them. The theory I wanted to test with musician earplugs was whether they would block the trigger sounds while letting me clearly hear when a person was speaking to me.

The short answer: No. They won’t.

It’s true that the musicians earplugs I tried allowed me to hear people talking with clarity, but they also let trigger noises through. I could hear every pop of the gum being chewed by my coworker. So, musicians earplugs work for drummers or guitarists who want to protect their ears while still hearing their music. But they don’t adequately block out misophonia triggers — at least not for me.

I did purchase the least expensive musicians earplugs, though. There are some that are custom made for the ear and are hundreds of dollars. But if the concept is the same in the expensive ear plugs, then I assume they would not be worth the investment.

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41 responses

  1. My son has suffered from this for years. His trigger is music. We are also in Portland. Could you give the contact info for the person you saw for help? Thanks

  2. We’re in Raleigh too and my daughter has Misophonia. If you know of anyone in this area who treats this, or a support group, we’d be very interested. Please let me know!

    1. Hi Kim, I apologize for not getting back with you sooner, I just received this email today. I wish I could say yes but unfortunately I cannot. My son is the one who suffers from this and we have found no one that can offer a cure. I hadn’t thought of a support group, I wonder if that would help. I’ll look around to see there is one in the area

    2. Wow, you guys are in NC too. I live an hour from Raleigh and have had misophonia for as long as I can remember. I’m 20 now and it’s as bad as it ever was. I’ve never met anyone with it, and have only recently started researching audiologists who presumably might have some ideas beyond staying connected to an ipod for life, which has been my way of coping. Do you guys have any recommendations for doctors in the know? I read about a sort of auditory retraining therapy that sounded interesting, so I’m looking for a doctor who does that. And having a support group sounds amazing.

  3. Gene…we live in Raleigh and my so suffers terribly. Who did you speak with?

    1. Hi Kim, I apologize for not getting back with you sooner, I just received this email today. I wish I could say yes but unfortunately I cannot. My son is the one who suffers from this and we have found no one that can offer a cure. I hadn’t thought of a support group, I wonder if that would help. I’ll look around to see there is one in the area.

    2. Hi Chrissy… I think,

      I’m not sure what I did but I was replying to a message from Kim but it looks like it ended up as a response to your email from March 11. I apologize for not getting back with you sooner. Your message from March 11 just showed up today. It’s my son who suffers from Misophonia terribly. As you may have gathered from my response to Kim, if you did indeed get it, who also lives in the Raleigh area. She was inquiring if there was a support group that these kids could attend. I have not researched that but it sounds like a good idea, if we could get them together. What are your thoughts.

      To answer your question, “who did we speak with”, we did a lot of research on line and found that the closest and most professional group near the Raleigh/Cary area was in Georgia. We did not solicit them because they could not offer a cure, only treatment, and there was no guaranty that the treatment would help. Our son has been see local folks for help with little to no results.

  4. Hi there, i am also suffering of misophonia. I leave in Turkey and will be glad to hear of anything that will help.

  5. I’ve suffered since I was 15,I’m now 36.my worst trigger is snoring,I used to hit my brother in his sleep to stop him snoring,I hated myself for it but couldn’t stop myself. I went to my gp once and he said he didn’t have a clue what I was talking about! (about 10 years ago before I even heard of misophonia) I have really struggled over the years as I can’t control my temper when I hear snoring,I can’t even listen to it on the t.v or radio.drives me insane.I just started to read this site and started to cry because I feel so relieved that I’m not alone and not mad!

    1. That sounds so much like me! My triggers are any sort of snoring, coughing, snorting, throat clearing type noises. I hit my dad once when I was little because of snoring, and routinely would wake my parents up because of their snoring. I could only sleep with multiple fans and white noise machines going full blast to block the loud snoring. They now have sleep apnea machines for what turned out to be significant sleep apnea, which keep their airways open at night, and thankfully for me that means there’s much much less noise, just the air sounds from the machines. If you live with a serious snorer I’d highly encourage you to talk to them about seeing a sleep specialist–loud snoring is often a sign of obstructive sleep apnea which can be a serious problem. And to think, my parents would never have done that for their health if it weren’t for my ridiculous intolerance of snoring.

  6. I have misophonia If hear tapping a drum or the turn signal tick in the car.anything repetitious I start to shake get angry and then cry… I have learned to wear head phones or to walk away some how..

  7. kathy, I so understand how you feel..I don’t drink to excape the problem I walk away to keep from beating the heck out of my husband and I at times feel like giving up and just taking my stuff and leaving.Hon, no one understands this and there are alot more of us out there.And it is NOT a mental issue.It is how the brain is processing the sound that is affecting our limbic or emotional systems.I am looking into white noise in ear plugs,cost around $195.00 I feel thats cheaper than lawyers after I get done with my husband . ( only kidding ) may peace with be you…..take a deep breath and let the air out slow. Judy 😉

  8. I am 54 years old and have suffered from this since early childhood. It seems to be getting worse and I am so exhausted at the end of the day from trying to stay calm and not respond the way I would like. My husband tries to understand but it is affecting our marriage of 33 years. I drink to escape which doesn’t solve anything. So glad to have found this page!

    Kathy

  9. You’re in Raleigh, NC? I’m desperate to find a neurobiofeedback practitioner to help! Can u post or further comment?

    1. Hi Melissa, How are you doing? I just received a message from this message from two other people in the Raleigh, NC area one from today, and then I noticed what looks like several message to me that I never receive. This one from you form a long time ago. So I thought I would response to see how you are doing. I do not suffer from the Misophonia, it is my son and it’s terrible. To the point, the person I received the message from (Kim) inquired if there was a support group in the Raleigh area for people who suffer from Misophonia. I told her that I was not aware of any but I was wondering if you heard of any of if you would be interested in being part of a support group. There’s four people in the area that I am aware of now i.e., you, my son Gene, a Chrissy, and a Kim. If you think you would be interest in sharing experience or simply talking with others in a support group let me know. Or, since it has been so long maybe you have already found a support group, please let me know if you have. I would like my to get my son talk with others.

      thanks,
      gene

      1. I have moved out of the Raleigh area. Thanks for getting back to me.

  10. I am so glad to finally realize I’m not crazy. It came to me the other night that I do have Misophonia. I know my family thinks I’m crazy. I live in an basement apartment and I wear wax earplugs. It really helps. I have a very hard time going to outside activities because of all the birds chirping. Snapping gum sends me over the edge. Thank you God for finally telling me I’m not crazy. I hope someday there will be a medication to take for this. Bless everybody who has this.

    Mary

  11. I’m only fourteen and I’ve had misophonia for quite a while, maybe a couple of years, but I really can’t remember how or when it started. I think it’s nice to finally read posts about a person who understands my condition. So far none of my family knows, but my classmates do, because they say I have the weirdest reactions during lunch. It’s hard, really, because some think I’m weird while some think I’m seeking attention by pretending. Whenever I wear earphones though, people think I’m being rude. :/

  12. The worst part is when you tell someone to stop doing that thing, like stop chewing gum or sniffing, but they do it again and again to annoy you and they are proud of what they do and they are making fun of you. I`m sick of the people.

  13. After 10 years of dealing with this issue I’ve been given my life back. By chance a childhood friend of mine is a Chinese Physician. We sat and talked and he recommended several things to do.

    1. He recommended a Chinese herbal tea. I drank the tea twice a day for a little over a month before I began noticing the misophonia symptoms subsiding. I now drink the tea just twice a week.

    2. He recommended the addition of Kefir milk to my daily diet. The Kefir grains thrive on all the bad stuffing milk while adding good bacteria and good enzymes to the milk. I use it in a smoothie daily which brings the nutrition from what you normally eat from 20% to over 90%. In this post I don’t have time to explain the science behind it but it works well.

    My daughter who is 2 yrs old I’ve noticed had the same sound issue I had. So I started her on the Kefir milk daily as well. Within a week she eats less because she’s getting more nutrition from her food and the symptoms of misophonia have subsided for her as well.

    My son age 7 who has had 3 sets of tubes in his ears and chronic sinus infections started drinking the Kefir milk daily as well. He’s been sinus and respiratory infection free for almost 7 months.

    If you want more details reply to post and I’ll get you my email info.

    1. Hi,

      Yes I would like more detail on tea and Kefir milk that you mentioned.

      We are looking to visit Audiological Consultants of Atlanta (ACA), since they are closer to us than Dr. Marsha Johnson in Portland. Good thing is that ACA works under the direction of Dr. Johnson.

      Thanks,

      Gene

      1. Gene, You can find Kefir grains online. You simple place the Kefir grain in a mason jar of milk. Let it set in a dark place but above 72 degrees for 24 hours. After that 24 hours you’ll notice that the good stuff in milk as separated from the bad stuff. Using a plastic strainer strain the good stuff into a bowl. All the bad stuff and Kefir grains will be left in the strainer. Using a plastic spoon fish out the Kefir grain. You can tell the difference it has a slight yellow tint to it. Fill the mason jar with milk and repeat the process daily. Depending on the size of your Kefir grain I recommend 4 oz of milk for every 1 Table spoon size of the Kefir grain. As you continue to do this the Kefir grain will grow in size. I do about 24oz of milk now per day. I split the Kefir milk between myself, the kids and the dog. When you start don’t do more than 4 oz a day for the first 10 days then slowly increase your in take of the Kefir grains. I drink about 14 oz a day the other 10 oz goes to the kids and the dog. The first 10 days you may feel a little odd as the Kefir is like a swat team and starts to kill all bad bacteria in the body.
        All that being said I’ve been off all SSRI’s and other medications since I started drinking Kefir milk. I feel great and I’m enjoying life again. If you are interested in the Chinese Tea that I drink email me directly (brentziemann@me.com) and I’ll get you in touch with my friend who is the Chinese Physician.

      2. Hello Gene,
        My daughter, older sister and a niece all suffer from misophonia. I have researched this for the last several months because my daughter wants to drop out of collage. We first noticed she had this back in early teens and as most people has escilated as she got older. anyway, this blog seems to have some good information. How was your doctors visit and did you try kefir milk and the tea? Kefir does not sound appealing at all…
        I live south of Chicago and have been looking for a dcotor, first one wants $250 or so per visit which we can not afford. I am now trying my insurance doctors but not sure which kind of doctor. Thanks for your time!

        Chris

    2. Hi GoatLogic,
      I am also a Chinese Physician and I am also treating someone with misophonia. It would be really helpful to find out exactly what herbal formula is working for you. It would be great to get the names of the actual herbs in your formula and the contact info for your Chinese Physician to touch base with them as this is the first case of misophonia I have treated and I would be able to help my patient a lot more if I could collaborate with another Chinese Physician with prior experience. I thank you for sharing your experience.

      Sincerely,

      Mike

      1. Mike,

        Email me directly and I’ll get you the information you requested.

        (brentziemann@me.com)

  14. Hello. We have just found out after reading symptoms and dealing with our son that he has this life sentence of a disorder. Sad. We have not sought medical intervention yet. What type of doctor should we look for? Thanks

  15. SonWithMisophonia | Reply

    Lifewithmisophonia, How are you doing? Is you treatment working? I believe my son has misophonia and we are taking him to a neurolist in the next couple of weeks that supposedly treats misophonia.

    1. I am doing OK. I need to update the blog but have been very busy! Long story short: I’ve been passed around to different therapists and am not seeing much results. If you find something that works for your son, please share it! Best of luck to you.

      1. Hi. Thanks for the response. My son went to our MD who never heard of Misophonia before I called to speak with him about it. He put my son on zoloft right off the bat w/o doing any significant testing. We finally found a place in Raleigh, NC that supposedly treat patients with Misophonia. He’s on spring break this week so we’re going to try to get him in for a consultation.
        Stay strong.

      2. Who/where in Raleigh?

    2. I’m also a mom with a son who suffers from misophonia. Just discovered the term last night thanks to Google. He can hardly attend class anymore as he can’t concentrate because of the eating/sniffling/chewing noises around him, or he wears headphones and just watches the board. Every day is a struggle. He has never stayed at the table for meals, not since he was a baby. Any suggestions, leads, anything, would be welcome. We’re in Maryland.

      1. Here is one place to start http://www.misophonia-provider.com/Treatment_Options.html
        Depending on where you live you may have to find an Audiologist that works with patients that suffer from misophonia.

  16. My name’s Nicole, I’m only 15. My teacher told me about this the other day because she noticed my sensitivity to sounds. It started when I was very little and since then I can not bear to hear so many different sounds it enrages me, it sometimes even makes it to the point where I get so mad I cry and can’t stand myself. School lunches and outings are Extremely hard on me. I am constantly listening to music to drowned out peoples noises. I can’t be around my dog and a bunch of my friends. I get disgusted by noises and end up getting rude and hateful.

  17. Hello!
    I live with misophonia since is was about 7 or 8 i think. Also in my case its geting worse and worse. By now, i´m 29, and i don´t know, how i can “survive” the approximate 50 more years. I love to be with people, i would like so much to go for a picnic or something like that, but there is no possibility. I wear earplugs as often as possible (the ones out of wax, becaus i think they fit better). At the moment i can´t stand my dog liking his mouth. Because of the earplugs i can´t hear it any more, but ist enough that i see it out of the angle of my eye, and i have to hold myself down, not to get aggressive. I feel so bad! I´v got such a nice dog, and can´t even look at it, although he´s in such a nice way trying to get my attention.
    There are days, when i can bear it better. Why is is like this? I think it must have something to do with hormons and neurotransmitter- levels ect. That gives me hope, that there also must be a medication to help! Theres medication against depression or burn- out- syndrome and lots of disaeses. So why not for us? (of course i know, that medication is not everything)
    I have to thank one of my coworkers, because she told my about Misophonia. I once kicked her out of the room because she was eating something, and afterwards excusing myself and telling her about my problem. She told my, she has read about this years ago in a scietifical magazine, and researced until she found the article weeks later. Now i knew, that i wasn´t the only one, and that i can name my condition! What a moment!
    Does anybody know experts in europe? I would like to try out anything! Behavioral therapy, medication, of even electrical shocks….(not serious).
    I live in Austria (not Australia–> we are the ones with Mozart and Arnold Schwarzenegger, not the ones with the kanguroos), and i´m not afraid of efford or costs to find help!

  18. I deal with the condition since I was 6. I am 35 now. I sometimes wish I could not hear anything. Not even the loughter of my kids if that was the price. My husband does not know about it and if I did tell him he would think I am wrong or crasy. He now thinks I am crasy so whats the difference?
    My brother suffers also. Its genetic allright, for sure.
    God I wish I was deaf.
    I live in Israel and dont know if there is a specialist in this over here.
    I dont know what to do….

    1. Ear plugs… it’s worth a try…

    2. Did you find a doctor in Israel?

  19. I too would like to hear how your appointment has turned out. I live in PA, but I would travel to talk to someone who has a clue on how to help with this. When is your appointment? (I just found out two days ago this ‘craziness’ has a name)!!!! Iam now 30 and have had it since I was about 15 years old.

    1. Hi Laura! I’m glad you finally can put a name to what’s been going on. I did go to my appointment and haven’t had time to sit down and write a whole post about it. Thank you for the reminder! I will try to do that this weekend. It seems like it will be a slow going process that will never really ‘cure’ me — just help me cope a little better. Hopefully there will be a real cure someday, as more people learn about this condition. Best of luck to you.

  20. Yeah, mine is getting worse with age, too. I used to really only be bothered by chewing, but now sometimes hearing certain people breathe really gets to me. I have my appointment soon and I’ll be sure to post what I learn. Best of luck to you.

  21. I’m interested in hearing how your apt turns out. I’ve dealt with misophonia for almost a decade now and as I’ve gotten older it’s getting harder and harder to weed out / cope with sounds.

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