bthompsonjr1993
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Very helpful, thanks for all the tools. I have been using just earplugs.
Of course! Just stick with this. It was a miracle for me and many others I know who have tried it
Very helpful, thanks for all the tools. I have been using just earplugs.
I have discovered something that has cured my sound sensitivity, it is TINNITUS RETRAINING THERAPY. I had HORRIBLE sensitivity to sound, and tinnitus retraining therapy SAVED me. The sensitivity was so bad that I was literally on the verge of ending it all, I thought there was no hope, I thought there was no chance it would work, but I had to give it a shot, and it WORKED. I highly, highly, highly recommend it to all CFS patients suffering with sound sensitivity (hyperacusis). It works for all types of sound sensitivity, no matter the cause. It is the only CFS symptom that I have ever been able to improve. If sound sensitivity is something you are struggling with, please please please try tinnitus retraining therapy. I did it without spending a dollar.
She said that the reason our brains are freaking out at sound is because something has happened to cause them to erroneously believe that these low levels of sound are too loud and will do damage to our hearing, so a large part of fixing it is using your conscious thoughts as much as possible to remind yourself that “No, brain, you need to relax, these levels are WELL below anything that would hurt me.”
She said that the reason our brains are freaking out at sound is because something has happened to cause them to erroneously believe that these low levels of sound are too loud and will do damage to our hearing, so a large part of fixing it is using your conscious thoughts as much as possible to remind yourself that “No, brain, you need to relax, these levels are WELL below anything that would hurt me.”
No, because when I did this training, I was laying down, with my eyes closed, and while deep breathing. My focus was not on pushing my brain to do anything. It was on acceptance. Accept that it is uncomfortable. Passively accept it and lay there long enough that you get lost in thoughts and you can actually forget about the noiseI find that when I force myself to tolerate noise, I often experience a spell of PEM after. Was this a problem for you with the training?
All I did was listen to this video
in headphones at a level so low that if I turned it any lower it would not be audible. And I listened to that for every moment of the day that I could, and then when I would get used to it and forget I was even listening to it, I would turn the volume up one, and I just continued that process, but then when I was up to a reasonable volume on that video, I switched over to this video
and did the same thing with that video, starting from a barely audible volume and working my way up.
My rule was that I would spend as little time in silence every day as humanly possible. The more time you spend in silence, the more you allow it to progress. I was so severe that I couldn't tolerate the low, barely audible whirr of the AC in my place. Now I am pretty much back to normal.
If you have any questions, please ask me, I would love to help in any way I can.
Hey @bctjr1993
Thank you for sharing this.
I'm also really right at the end of the line with hyperacusis and trying your version of the retraining/sound therapy method, although I find I cannot tolerate any kind of pink noise yet so have chosen a video by the same creator which is just brown noise, instead of your first one which was brown into pink.
Hopefully a place to start til I can tolerate the full pink spectrum.
Wanted to ask about method -
did mean you would do this gradual upward volume adjustment throughout the day when you would acclimatise to the levels, or that upward adjustment was something which would happen over time eg weeks and months?
The upward adjustment was something that happened over weeks and months. Each day I would listen to it with the goal of either maintaining the max level I reached the day before, or of upping it by one notch. The goal was to listen to that sound while my thoughts were elsewhere, and get to the point where I would temporarily forget that I was even listening to the sound. Now of course each day, to get to the volume that I amxed out at the day before, and to try to beat that, I would ramp up the volume one notch at a time from zero, and this would take a few minutes of going up by one, sitting at that volume for a bit, then going up by another, and repeating that until I hit or improved upon my target volume for that day.
Would you also adjust volume down during the day if you became more sensitive, or tough it out, or take a break from listening and resume later at the previous volume setting?
I am very stubborn and I was determined not to take a step back. For me, if I was feeling more sensitive, I would pretend that the pain that came with listening to it at the same volume as yesterday was totally unavoidable. i would tell myself I had no choice but to listen to it as the same volume as yesterday. Listening to it at a lower volume was not an option for me. I would submit to the discomfort. I would close my eyes and mentally welcome the discomfort, while mentally telling myself that my brain is incorrect in thinking that the noise is too loud. I told myself that I knew better, and that the discomfort my brain was temporarily feeling was like medicine so that it can receive sound better in the future. I fully accepted the whole experience. I never took a step back.
I mean, is it important to be consistent and stick to this very gradual adjustment upward, not losing ground, always resuming at the exact same level as you left off the previous day?
I think that it is, yes. Simply because I want to be the one in charge. I viewed every day as a fight for ground. In my mind, I visualized my hearing sensitivity like a piercing. If I want to increase it, I have to apply sound. Much like to keep a piercing open, you have to keep the piercing in. And if you're someone who wants gauges which require huge piercing holes, you never go down to a smaller object in your ear. It is either the same or bigger every day. I made sure to either hold my ground or to take over more ground every day. I never allowed regression, because to me that was my wasting a day and being counter productive.
Or can the volume vary through each day, always starting at the lowest audible volume and going from there according to varying sensitivity that day?
I always started at the lowest audible volume each day, but ramped up rather quickly each day so as to ALWAYS spend the majority of each day listening to either the max volume that I listened to the day before, or one higher than that. Ideally it would be one higher.
Did you also mean you might acclimatise to a kind of "normal" volume during the course of a day, and then switch listening from the brown to pink noise videos that day, or that over the course of time you graduated from brown to pink full time?
Over the course of time I graduated from the first video I linked, to the second. Once I graduated to the second video, by enduring full volume of the first video and feeling comfortable with it, I never went back to the first. Of course, when I started listening to the second video, I wasn't able to listen to it comfortably at full volume like I had just been doing with the first one. It was a whole new process of ramping up to full volume over time once I switched over to the second video.
How long did it take for you to begin to notice a difference in your hyperacusis?
I want to say a few weeks, I think it was. But everyone is different. I can say I was extremely happy and had made significant progress once I had been doing it religiously every day for 6 weeks. By 3 months I would say I was pretty much back to normal.
Did you have periods of setback?
I did have some day where things felt more difficult than they had in the preceding days. This was often correlated to my mental and physical stress levels. But I always stuck with my plan and my progress was always pretty steady and consistent.
Did/do you also have tinnitus and did it impact that?
I did also have tinnitus. It was awful when I started this therapy, but by the end it wasn't as bad. I would say the sound sensitivity responded better than the tinnitus. But now a few years later I would say my tinnitus seems pretty mild and its not really an issue for me in my life.
Anyone else trying this method who's had some success I'd be glad to hear from.
My audiologist often asks me to mentor her new and current patients. I have seen many of them through this process, and everyone she has assigned me to has recovered so far. Basically everyone she puts through this process recovers. I could maybe have some of them come on here and share their stories, although none of them have CFS, so I am not sure how relevant they would be. They got hyperacusis from a number of different causes.
Sleepphones flat headphones in a fabric headband, which are the most tolerable kind for laying in a fixed position on my side.
Are those sleepphones worth the money they cost?
Have some cheap headband I found on Amazon
Your account of how this treatment has gone for you moves me tremendously, it touches my heart to know that you had what sounds like basically the same experience as me with this treatment. I am so glad you slipped out of the special form of hell that is known as severe hyperacusis. My research into this treatment has strongly led me to believe that it should work across the board for CFS patients, and I am so glad that you saw it through.Hello @bctjr1993
I became too unwell to reply to your helpful message last year, so I wanted at last to respond properly and to give an update for you and anyone else pursuing Tinnitus Retraining / Sound Therapy for ME-related hyperacusis.
I forget what I may/n't have shared in this thread already so I will say I have Very Severe ME (bedbound apart from toilet use), also non-EDS Joint Hypermobility, CCI, "likely" AAI, symptoms of MCAS, POTS and a provisional dx of Occult Tethered Cord Syndrome, pending further testing.
I hope that info will help others considering pursuing this line of treatment, in taking my remarks in context of their own conditions.
Having 'graduated' from Brown Noise since we spoke in Sep '21, I've been using the Pink Noise tracks by Acúfenos Otín Lucas on YouTube 5 days/week for up to 6hrs/daily as tolerated, via Sleepphones flat headphones in a fabric headband, which are the most tolerable kind for laying in a fixed position on my side.
The improvement during that time has been transformative in terms of my quality of life.
When I got in touch with you I was using either foam earplugs with wax earplugs on top, or spiral-shaped sound engineer's earplugs full time and really feeling in hell with all ambient noise.
Over the last 6-7 months I've gradually decreased earplug use and increased Sound Therapy, to the point I now only use earplugs for the second half of sleep when the dawn chorus wakes me, for when someone is in directly my room performing a noisy task, or for when vacuuming or a washing machine spin cycle are taking place directly outside of my room.
6 months ago, the electrical hum of a chest freezer sitting outside my room was torture for me. Now I am not aware of it at all.
I've moved from being unable to tolerate any electronically generated audio input, to being able to listen to audiobooks at lowest volume and 0.7x speed, to recently reintroducing audio with more than one voice and sometimes background music or sounds, which has put comedy and drama back on the menu.
I used selective frequency filtering Flare Audio Calmer Night earplugs to help with this transition and now don't need them at all, except during rare spikes of sound sensitivity.
I'm also less aware of my tinnitus (for context: I had audiometric testing at an ENT surgeon's office several years ago when moderately ill and the technician commented mine was among the worst cases she'd encountered), which was not the focus of this exercise for me, but a definite bonus.
I still struggle with conversation – listening being far worse than speaking, and the phone particularly bad – but this has much more to do with issues of cognition, working memory and general sensory input-based PEM than hyperacusis.
Perhaps the most remarkable thing is I can now tolerate the washing machine being used.
It is situated right outside my bedroom door and previously my family had to relocate me to the living room once a month to do the household laundry, which was a negatively anticipated event for all.
I wrote this today while lying with Pink Noise playing in my Sleepphones, as the machine rattled away outside and me without earplugs right up until the spin cycle.
Something like this would have crashed me entirely a year ago.
I have no idea if this retraining method will work across the board and encourage others exploring this therapy to proceed with due caution, especially if you're severely ill.
However, trying this really got me out of a space I was finding unsustainable and I think it's been the first example of a prominent ME symptom moving in the direction of improvement due to an intervention, which has given me hope for other things.
I want to thank you sincerely for sharing your experience and making this possible for me and others.
W
Are those sleepphones worth the money they cost?
Have some cheap headband I found on Amazon
I know what you mean when you say it gives you hope. I still think to myself, if that major CFS symptom was totally reversible, why couldn't the rest be?! And I also know what you mean when you say the hyperacusis was not sustainable for you. I was in the same place, I don't think its a stretch to say that this treatment may have saved my life, because I don't know how much longer I could have hung on through those horrible symptoms brought on by every little vibration around me that most people wouldn't even notice. Which is why it was vital for me to share it on here.
So thank you for sharing your account. It made me feel awesome to read, and it is a valuable testimony for others who are reading this thread. I wish you all the best going forward as hopefully we find more breakthroughs like this one in the future!
I read the book by the creator of the treatment, and he goes into detail about that. It worked for my CFS induced hyperacusis
Hi @bctjr1993 -- I don't know if you posted the name of the book you refer to, but I'd very much appreciate it if you could post the name of the book, and/or a link to it somewhere. -- Thanks!
BTW, I just watched a video which suggested warmed castor oil on the ears to normalize energies around the ears and auditory system. I intend to give that a try. They suggested 4x/day for 20 min. It was mostly referring to tinnitus, but I assume it could be helpful for hyperacusis as well.
Also, thank you for posting your successful experiences here!
Hey @Wayne , yeah here is an amazon link to the book that I read. Don't be fooled by the title. The method is called "Tinnitus Retraining Therapy", but it covers decreased sound tolerance. In fact, this treatment did more for my sound tolerance than it even did for my tinnitus.Hi @bctjr1993 -- I don't know if you posted the name of the book you refer to, but I'd very much appreciate it if you could post the name of the book, and/or a link to it somewhere. -- Thanks!
BTW, I just watched a video which suggested warmed castor oil on the ears to normalize energies around the ears and auditory system. I intend to give that a try. They suggested 4x/day for 20 min. It was mostly referring to tinnitus, but I assume it could be helpful for hyperacusis as well.
Also, thank you for posting your successful experiences here!