Serious misgivings after trying Neurofeedback for my Misophonia

After many attempts at trying to curb my Misophonia, I decided to try my most expensive option yet: neurofeedback.

BrainWaveHealthIllustI’m apprehensive to even write about neurofeedback because I don’t want this post to seem like an endorsement of the method. But basically, the neuro process works like this: you relax in a chair with a few electronic sensors attached to your ears and scalp; the sensors read your brain waves as you listen to music and watch a light display on a computer screen; the music and light display are interrupted ever-so-slightly when the sensors detect that your brain is deviating from a happy and healthy state; these slight interruptions – or ‘feedback’ – are believed by some to rewire your brain to achieve some level of normalcy.

I’ve read about a handful of people online who say the method has cured their Misophonia or has at least reduced their symptoms.

There are a number of computer programs out there that provide this service. I tried Zengar’s Neuroptimal after the creator of that particular program, Val Brown, spoke at the first Misophonia conference in Portland a couple of years ago. There also was a man at the conference who said that after trying neuro, his Misophonia completely vanished. One couple there said they were about to purchase their own neurofeedback machine to use whenever they wanted, at a cost of about $10,000.

Neuroptimal is a one-size-fits-all approach to neurofeedback. It claims to help with a whole host of problems, including ADHD, autism, Alzheimers disease and post-traumatic stress disorder. It claims to help you sleep better and to increase your ability focus at the office.

I found someone in my area with a Neuroptimal machine and met her for a consultation. She administered neuro in an office-like setting; it felt like I was going to see a therapist and there was even a reception desk. My practitioner told me she had treated one other person with Misophonia, and that Neuroptimal reduced that person’s Misophonia triggers. I was asked to commit up-front to 24 sessions at $75 each – an $1,800 investment. I agreed.

I started weekly sessions and hoped for an improvement, but ultimately I saw none.

My practitioner, who does not have Misophonia, seemed to truly believe in the power of neuro, almost to the point that it seemed to cloud her judgement when I told her that I wasn’t seeing any improvements. She would ask me questions such as, “Is there anything at all that you’re noticing that’s different? Are you sleeping better? Are you able to focus better at work? Are your relationships better?”

Was she actually encouraging me to seek out a placebo effect? It seemed unscientific and unprofessional. She also told me that it was OK if I fell asleep during my neuro sessions and that it would be just as effective either way.

“Wow… It’s working,” she’d say after pointing to the analytics spit out by the neuro program following a session. “Stuff’s moving.” That was her way of telling me my brain was creating new pathways; it was being rewired to find a different response to triggers. Despite her take on what was happening to my brain, my Misophonia remained the same. I declined further neuro sessions.

ar128231040041311My provider said I should see some changes during those 24 sessions. In the rare endorsements I’ve read online about using neuro to treat Misophonia, people have said it can take many, many more sessions than 24 to start seeing an improvement. I simply didn’t have the financial means to continue, nor the ability to suspend my disbelief any longer.

If you have unlimited time and money, or if there’s a practitioner out there willing to treat you for free, I suppose you could give it a whirl. In that case, I also would suggest trying a neuro program that is more targeted than the one-size-fits-all approach. It would be wonderful to be able to hear that the method is working for more than just a handful of people with Misophonia.

If money is tight, I would strongly urge you not to try neurofeedback until there is insurmountable evidence that this method does help people with Misophonia. It’s simply too expensive, and having a practitioner tell you that you probably just need more sessions before you see improvements? It leaves too much room for the possibility that you’ll be taken advantage of.

If you disagree with me, or if you’ve come across any peer-reviewed studies or scholarly articles that suggest neurofeedback provides more than a placebo effect for any disease or disorder, could you let me know in the comments section?

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13 responses

  1. Hey there,

    Just wanted to say I completely understand how you feel about neuro therapy. It’s a pain… I think it’s the biggest pain because you’re suffering so much and spending all this money but it’s a treatment that you can’t really feel yourself getting better. When I was 10 I got my SSSS and I’m 23 now. I just found out as well as my family that I don’t hate them but it’s a disorder called misophonia. That was the biggest relief ever but it still obviously sucks and is hard to deal with as I pretty much always have anxiety at home just knowing something can set me off. I’ve always had some OCD in my life but my rituals normally changed fast or went away but some things would always stick with me like checking my hockey bag before I leave home around 30 times+ before I could leave the house. I thought my thinking was a bit weird because I would repetitively think of things or have lists that I would constantly think of but I thought I just liked to think? haha. Anyways… In grade 12 my sister became my brother and I guess that was hard for me to deal with especially with my low mental health which I didn’t realize at the time. I learned that I built trauma off of that situation even tho I’m really close with my brother now (yay for coming together because of a joint!) … Anyways.. I went thru a phase where I was extremely angry and didn’t care if I had to fight people. (Not proud of it but I was never the initiator I just never backed down). One day in a bar on new year eve.. I promised myself no more fights ever. Yet.. My worst luck.. I got attacked from someone from behind at the bar and took a blow to the back of my head. A week later and the worst anxiety set in place that I’ve been battling with for about 2 years now which includes depression and periods of dissociation ect. After too much struggling I went to a clinic called The Swingle Clinic here in Vancouver BC which is all about neuro therapy. They are one if not the best neuro therapy clinics in the world and people travel all around the world to go there.

    I’ve been going for about 8 months now with times where I’ve said its a waste of money and a scam. My family doctor also told me its “bogus” and that it doesn’t work. I’ve been doing super intense sessions now where I go around 3 times a week and had a huge trauma release today. I slowly feel my miso dying down where I forget that I even have it sometimes but I do still feel my body kind of cringe at certain sounds but I don’t feel like destroying that thing anymore hah. I haven’t finished my treatment yet but I’m so close to it and I know my OCD and miso and anxieties are all going to go away. I really stopped believing in it but I think it’s just one of these treatments that you just have to stick with till the very end. Even tho it sucks because you don’t exactly feel like you’re getting better and you’re just waisting money as it does start to add up quick. I just wish it would be covered under medical plans.

    Anyways sorry for the long ramble just wanted to give my two cents on it and I know how annoying the treatment is but I think this could be the righty cure for misophonia!

  2. Hi, I am a neurotherapist and licensed counselor. I have done neurofeedback for over 6 years. Here is a list of some published studies http://media.wix.com/ugd/fb579f_b7e0510f74704494876b121cb7501f59.pdf.

    There are no published studies for neurofeedback and misophonia. Just because there are no published studies does not mean that some practitioners are not getting good results. I would can not give an opinion in this area. However, I am just providing what you asked for in the article.

  3. From what I’ve researched there is no actual cure in the context that there is not a one-size fits all treatment, which is disappointing to say the least. Diet, exercise, and a good night’s sleep have made an impact on the intensity of her reactions but we are still seeking a doctor or therapist who is familiar with Misophonia that can help alleviate her stress. I’m reading that cognitive therapy has been proven useful so we’ll go down that road as well.

    On car trips she wears her noise cancelling headphones and we worked with her teacher to allow her to wear earplugs during days she has a test. Our whole family has trained ourselves not to sniff near her to a point where if I do it at work I feel bad and look around even though I know she’s not around.

    As far as trying to explain to others and educate them beyond a ‘get over it’ approach, I’ve found the letters written here: http://www.misophonia.com/resources/letters/ really help break down what she’s suffering through in a manner that was understandable to those unfamiliar with the condition.

  4. I am happy to have found your blog, as I too suffer from Misophonia. I have always wondered ,but afraid to explore, if getting hypnotized would work? I don’t even know if getting hypnotized is real but there HAS to be a cure ,right??????? Looking forward to hearing if you find something that works. It is SO HARD when your spouse thinks there is a miracle trick to fixing you…..if only.

    1. I did hypnotherapy for my Tourette’s, but we also worked on the misophonia as it triggers my tics. There was no real improvement. Sadly. I also did neurofeedback for a time, although I didn’t finish the course of it and at the time I had significant other issues that took precedence over the misophonia.

  5. Hi guys. Im 13 years old and Im just wondering, how does the medicine etc stop the Misophonia, as is it a neurological problem or a psychological problem? Please contact me on here or using the website. I hate having this condition and it literally tears me apart and I literally want to die when a sound is triggered. I hate it so much, if you could help it would be amazing thankyou.n

    1. Hi Lucy! I just wanted to reach out to you because my daughter who is 10 also has miso. Every though I don’t have it I know what she goes through and it’s awful. Question – are there certain people (family members, mom, dad) who trigger you? I would love to help you and provide you with some drug free options. Eric

    2. Hi Lucy! How have you been doing handling your triggers? I understand how you feel and felt the same way you do when I was your age. I hope you can find comfort in that you are not alone and that is it possible to find happiness. Have you been able to find support from friends and family? https://ourmisolife.wordpress.com/2015/10/03/my-journey-with-misophonia/

  6. I’m fortunate to have found your blog as recent research has convinced me that my 9yr old currently suffers from Misophonia. Her reaction to sniffing ranks at about a 9/10 according to the self-test on http://www.misophonia.com

    We as a family are working on trying to understand and adapt as the recent Winter months (flu season) has played hell on her emotions, especially in school when she can’t focus on work due to all the kids that should have stayed home for the day triggering her left and right.

    I am sad to discover however, that this condition is not currently seen as curable, which is hard to deal with as a parent seeing their child suffer. As she already diagnosed ADD, I’m looking to explore other medical and therapeutic options, and will be visiting your blog in the future for further anecdotal experiences they may help her out. So thanks for doing this, every bit helps her in realizing that she is neither a ‘freak’ or alone in this world dealing with such a condition.

    1. Brett – our daughter is misophonic as well (she’s almost 10) and we have been doing several natural treatments with her to help reduce the triggers. Some things that have worked so far: reducing sugar, dairy, high fructose corn syrup, food dyes/additives. Exercise (yoga, walking, dance, etc) Chiropractic (find someone doing Network or BGI even though it may seem a little weird) Emotional Freedom Technique (google it) CranioSacral Therapy and Essential Oils. In my opinion you have to find what works for you and there are many pieces of the puzzle but if you can help teach her strategies for calming/reducing stress/relaxing it will help.

  7. Hi.
    I also suffer from misophonia. Your story could be written by me.
    A year ago, I tried neurofeedback, I did 100 sessions and no improvements on noise sensitivity.
    Now I’m reading this amazing book on trauma: “Wake the Tiger by Peter Levine”
    I’m going to give a try to this approach. If you are interested or think this book is as amazing as I think it is, please share your thoughts.
    Best regards,
    Maria

  8. Thanks very much for this information regarding neuro. While I’ve looked nowhere near as far into the procedure as you, I’ve heard of it and was also rather skeptical of its, “one size fits all, ” claims.

    Here’s hoping that something supported by scientific/medical trials comes along for the sake of us all.

    Thanks again for the post!

  9. paola parendella | Reply

    My dear friend
    sorry I have read a lot from you but I do not even now your name.
    I am so grateful to you and to what you are trying (I have not time and money and I am just at the start of my research) – I just wanted to say thank you to help us all.
    Good luck for the future!
    PAOLA

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