Still Alive and Doing Better! Hyperacusis and Pain Have Reduced by About 75%!

I’ve been away from this forum for a little while, and I am happy and relieved to report that I am doing much better. I am still very much a work in progress, but the hyperacusis and pain have reduced by about 75% over the last several months.

Here is a summary of what I went through and the symptoms I experienced:

I had a long history of attending loud concerts, blasting music in my car, and extensive headphone use. In the summer of 2020 I experienced sudden hearing loss and gained tinnitus while using headphones. I soon developed hyperacusis and ear pain from sounds in both ears.

Over the next year I got progressively worse and worse no matter what I did (silence, noise exposure, etc). By May, 2021, the hyperacusis had progressed to such a severe state that I experienced extreme ear burning, itching, and aching pain 24/7 that worsened from any sound. Whispers and even the sound of someone breathing was painful. In addition to so much constant pain, every sound seemed overwhelmingly loud. I was completely homebound, in earplugs 24/7, and isolated in silence away from my children. The pain and intense itching would start deep in my ears and spread all over my skull, face, jaw, and inside my mouth. I experienced crushing headaches and had horrible brain fog. I’d feel electrical zaps from my ears into my brain when falling asleep (exploding head syndrome). The tinnitus had become extremely reactive with multiple tones, beeps, electrical buzzing, and crazy musical melodies. I had to sleep on an wedge pillow because laying flat made the ear and head pain much worse. I was often bed-bound because the vibrations from carefully walking around my own house made the ear pain worse. My nervous system was so over sensitized that touching a phone or tablet screen made my ears hurt worse (weird!), and I was diagnosed with central sensitization by a pain doctor. For a long time all I could do to pass the time was lay in bed and stare at the wall in silence. I felt like I was being tortured to death by my ears, and every night I went to sleep hoping that I wouldn’t wake up the next morning.

I tried so many of the medications and supplements talked here. Some didn’t do anything, a few helped only a little and temporarily, and many others made me feel worse. I saw ENTs, neurologists, neurotologists, rheumatologists, audiologists, pain doctors, psychologists, chiropractors, acupuncturists, and nutritionists and none of them could help me.

I tried LLLT which was a huge mistake, and it raised the hyperacusis to catastrophic levels. I also had two stellate ganglion nerve blocks done. The nerve blocks temporarily helped with my out of control fight/flight response, but they didn’t do much for the sound sensitivity and ear pain.

By May of this year (2021), I was at the end of my rope, utterly desperate for relief, and I feared that I wouldn’t live to see my children grow up. I had been eating a strict low carb autoimmune diet for months, and still my ears seemed to worsen after every time I ate. It got so bad that I didn’t want to eat at all anymore. The intense ear itching I experienced made me wonder if I had developed mast cell issues on top of everything else. I stopped eating all fruits and vegetables, and I switched to a lower histamine carnivore type diet. This meant I only ate freshly cooked meat, animal fats and organs. The first week my brain fog lessened and the ear reactions in response to eating became less severe.

Around the same time that I started the carnivore diet, I also started homeopathic treatment with a classical homeopath. I know many people are very skeptical of homeopathy, and I used to be, too. I was just so incredibly desperate that I was willing to try anything to get better. The first couple of remedies that I was prescribed helped only a little. I would experience some minor improvements, but then I would regress. It was extremely frustrating, but the minor improvements gave me enough hope to stick with it. Plus, I felt like I had already tried everything else so this felt like my last chance for healing. After about two months of trial and error, I was prescribed a new remedy that finally gave me some real relief. I have continued to take that remedy for the last 5 months, and I have gradually improved a lot in that time.

The last piece of my recovery has been brain retraining with DNRS (Dynamic Neural Retraining System). After reading a lot about pain science and chronic pain management, I learned that the brain uses pain to protect us from injury and death. It’s the brain that controls how much pain a person feels regardless of how severe an injury may be. So, it made sense to me to try to retrain my brain to lessen or stop sending pain signals in response to sound. There are success stories of people using DNRS to recover from Lyme disease, mold toxicity, CFS, mast cell issues, chronic pain, chronic inflammatory response syndrome, and sensitivities to food, chemicals, lights, and sounds. I started practicing DNRS about a month after starting the carnivore diet and homeopathy.

I know starting multiple therapies at the same time isn’t scientific, but I was in such a horrific state that I had to try everything I could to feel better. I am not interested in debating which of the therapies people think really helped me or which ones they think are BS. I firmly believe that the diet, homeopathy, and DNRS are all working together to aid in my recovery. I feel worse when I slack on any one of them so I will continue to use them all indefinitely.

The only supplements I take are CBD, L-Theanine, a small amount of bee pollen, adrenal cocktails (Potassium, Sodium, Vitamin C), Magnesium spray, and beef kidney (to reduce histamine reactions).

The improvements I’ve had have been very gradual, and the recovery has not been linear. Today, I still experience some level of ear discomfort most of the time. It’s very tolerable now, and I try my best to ignore it. Most of the other horrible pain symptoms are gone or very minor and sporadic. I have better days and worse days, but I try to not let the worse days stop me from doing what I want to do. The tinnitus has calmed down a lot, and it is mostly a steady high pitched static noise that I can easily tune out.

In the last couple of months I have been able to take my kids to the park, zoo, camping, to birthday parties, and to an amusement park. I can laugh and socialize again. I still avoid construction noise and cell phone speakers. I listen to music all day everyday on high quality speakers at low volume, and I am working on gradually increasing the volume to build my tolerance. I actually feel better around sounds than in silence now which is amazing because months ago it was the complete opposite. I am so very excited to spend Christmas with my family after spending last Christmas home alone in silence.

I’ll try my best to respond if there are questions, but I hope you understand if I don’t respond right away. Talking about these awful symptoms and what I went through is still very traumatic. I have some serious health PTSD after going through all of this so I don’t spend a lot of time in forums anymore.

My heart breaks for anyone going through similar ear troubles, and I completely understand how debilitating they can be. If me sharing what I’m doing helps a single person then it’s worth sharing even if I get some grief for how unconventional my methods are, lol.

 

I’m very happy for you. Seems like you were in an extremely dark place and you never gave up, it’s inspiring to read this.

I’m wondering if you’d be willing to elaborate on the specific homeopathic remedy that worked for you. I’d be willing to try all of these treatments in conjunction for several months if it means being able to listen to music without pain again.

Lastly, please be careful not to overexpose yourself too quickly. I’ve reached 75% improvement 3 separate times since my catastrophic noise injury in May of 2019. I have yet to ever progress past that point. Instead I have had 3 setbacks that strip away about 30% of the progress. So play it safe!

Congrats again and good luck to you. I’m glad you’re able to spend time with your kids again.

 

I am so glad you got better. It gives me hope. I'm pretty much where you were at your worst. Like you I worsened over the last year.

Yeah what homeopathic treatment exactly did you take? And explain more about the retraining system if you could!

 

Hello @Marin, are you wearing ear protection whilst out and about?

So pleased to hear of your recovery x

Sending prayers.

 

I am so sorry you are in a similarly bad position! It’s truly hell on earth.

The wild thing about homeopathy is that it’s very individual. What works for me may not work for you because our symptoms could be a little different. What worked best for me (so far) has been Pulsatilla 200c. I only take a dose about once every two weeks because I’m super sensitive. If you want to give Pulsatilla try I’d recommend the 30c version first because it’s weaker and you can test to see how you react to it. I buy mine from Sprouts, but its also available on Amazon. If Pulsatilla doesn’t work for you, there could very well be a different remedy that is better suited for you, and it would take working with a homeopath to try to figure out what that might be.

The idea behind DNRS is that some injuries or illnesses can cause an additional limbic system/brain injury. When your limbic system is injured, it can perpetuate and even worsen unwanted symptoms. For example, sound had caused me so much pain for so long, that it got to the point that even the thought of listening to music made my ears hurt worse. My brain had (understandably) become conditioned to increase pain at the thought of music, and I felt like I wasn’t ever going to get better if I didn’t overcome that. It’s like that Pavlov dog experiment where the dog is conditioned to salivate when exposed to certain stimulus even if there is no food.

The DNRS program involves doing an hour of “rounds” a day. In these rounds there is a script that you say to yourself along with an affirmation and some visualizations. It sounds pretty cheesy and I feel like a total goof when I do it. It really has helped me, though.

I started by just imagining listening to music or being around other painful sounds, and I gradually worked my way up to really exposing myself to those sounds. The program also emphasizes not focusing on symptoms, and doing whatever you can to elevate your mood throughout the day. I know it seems impossible to not focus on symptoms when things are so bad, I really do! I just did what whatever I could minute to minute to not focus on my symptoms, and they eventually lessened and faded to the background (most of the time). I also want to mention that DNRS also emphasizes not pushing yourself too hard. They recommend taking very small incremental steps to expose yourself to any stimulus that triggers symptoms.

I really hope you find something that works for you! Just keep trying whatever you can. As you can see, I had to go waaaaaay “outside the box” to get relief.

 

Thank you

I hardly ever wear ear protection when I’m out these days. In the last month I have only worn earmuffs while using the electric mixer and earplugs a couple of times while at a noisy amusement park. That’s about it.

 

Thank you. I really appreciate it. You seem so much better, it’s just a relief people can get way better from this. I’m starting low histamine soon.

So exposing yourself to sound. Did you ever have delayed pain? Because if I go out and try to listen to a sound, sometimes it’s ok but I pay for it later.

Your worst trigger sounds, do you imagine not being getting pain from them? Makes sense? How did you gradually expose yourself to those?

My worst trigger sounds are squeaking car brakes and squeaking doors. If I hear any noise like that I permanently worsen and get horrible pain. How do I gradually expose myself to those noises if they do so much damage?

 

Great post!

Did you have neck pain?

TMJ pain?

Did the central sensitization resolve?

 

Yeah, I had the exact same problem. Instant pain plus even worse delayed pain that could show up a day or two later.

I honestly didn’t have any luck with exposing myself to sounds until I started homeopathy. Before homeopathy, most exposures resulted in what seemed like permanent worsenings. Homeopathy seemed to lessen my symptoms and allowed me to bounce back from exposure. So for me, homeopathy and DNRS seemed to really work hand in hand. If I had only used homeopathy and I didn’t work on exposing myself to more and more sounds I’m sure my tolerances wouldn’t be what they are now.

When I started practicing DNRS, I couldn’t even open a window because just the ambient sound of air and nature were way too painful. For my visualizations, I would think about a happy time when I was outside, feeling great, and maybe there was some music in the distance in that memory. I would picture myself as being 100% healthy and unbothered by the sounds around me. Once I could think about being outside or listening to music without triggering symptoms, I would open a window for 10 seconds and then do a DNRS round with happy visualizations to try to take my attention away from any painful symptoms that had been triggered. From there I gradually exposed myself for longer and longer periods of time. It was definitely the hardest thing I’ve ever done, and I accidentally overdid it a lot at first because I had such low tolerances. If I backslid too much after an exposure I’d know it was time to take more of the homeopathic remedy which normally makes me feel better pretty quickly.

Car brakes are rough, and I can understand why they are problematic for you. I still wouldn’t want to be next them now! Thankfully, they aren’t catastrophic for me anymore. When I get exposed to things like brakes that trigger symptoms, I’ll tell myself over and over that no one else around me is having trouble so I shouldn’t either and I try to focus on other things to distract myself.

You mentioned how the sounds are damaging. That is something that I had to stop telling myself, whether it’s true or not. I had to stop picturing how fried and inflamed the inside of my ears must be, and instead get into the habit of telling myself that my brain was sending false pain signals. That is a strategy I’ve seen used in pain management for various pain conditions, and it’s part of the DNRS program.

One last thing about visualizations. I really think they help prepare the brain for how it should react to various situations. I remember reading a study how one group of people where asked to visualize practicing a task and another group actually practiced the task. At the end of the study, the people who had only practiced using visualizations were almost as good at the task as the people who had actually practiced the task. That’s pretty incredible! I have also read about professional sport players visualizing plays before big games for the same reasons.

I know how woo woo this all must sound. If it helps at all, I have bachelor’s in a science field, did so much research on hyperacusis & tinnitus, and tried the medical route with zero success. This has been the only thing to work for me.

 

Yep! I feel like I have every comorbidity possible, lucky me.

I have a significant misalignment in my upper neck. Now that I’m not homebound anymore, I’ve started going to a chiropractor to help with my neck. It would be nice if fixing my neck helps me even more, but so far my neck just hurts less.

I also have braces and a bad bite. I had braces before the ear troubles started, and I had to put my treatment on hold for about a year while I was homebound. I am back to going to the orthodontist now. The orthodontic adjustments normally cause the symptoms to flare up for a couple of days, but then they settle back down. Maybe I’ll get lucky and I’ll feel even better once my bite is fixed. I can only hope!

The central sensitization symptoms are 99% gone now, thank goodness!

 

Do you remember how you approached reducing the use of earplugs? What was that process like? Did you just stop wearing them abruptly or did you “taper” usage down over time? Did you notice any improvements when you stopped protecting as much?

 

Regarding the central sensitization, did you have burning sensation in your fingertips when for example using a phone?

How long did it take to subside?

Did you do something special to get rid of it?

Thank you for your answers!

 

I gradually stopped wearing them while I was still mostly homebound. At first, it was like just the air was way too loud and made my ears burn and itch worse, but wearing earplugs also really irritated and hurt my ear canals. Muffs hurt the nerves in my face and around my ears, too. Talk about being stuck between a rock and a hard place! It was quite a relief once I’d gradually worked up to going long periods of time without ear protection.

When I started going outside again, I wore earplugs the first couple of times I tried something new like going for a short walk, driving down the street, or going into a store for a couple of minutes. Then I’d try those activities without the earplugs. It was uncomfortable at first, but the more I did something the easier it became.

Going without ear protection definitely helped to reduce the loudness hyperacusis. It’s hard to say how much reducing ear protection helped with the pain part, but I don’t doubt that it helped at least a little. It helps me to compare hyperacusis to something like a serious knee injury. At first, rest is needed to let the injury heal as much as possible. However, at some point you need to start carefully walking on that knee to get it used to functioning again. It will probably be uncomfortable and maybe hurt at first, but overtime it becomes used to walking and carrying weight again. I don’t know how accurate it is to compare hyperacusis to another physical injury, but the idea that they could be similar has helped motivate me to keep pushing.

One piece of helpful info that I learned from the pain management books and articles I read was that avoidance can cause pain to get worse and worse which seemed to be happening to me. If you avoid doing something out of fear of pain, your brain learns that the activity is a threat and turns up the pain to keep you safe and from doing that activity again. Then you avoid that thing even more, and the cycle continues. If you can convince your brain that the activity is not a threat, it should turn down the pain. If I’m exposed to noises that hurt, I tell myself I’m safe, I don’t care that it hurts, and I might do a DNRS round, too.

 

Thanks for your responses. Honestly your recovery is being talked about by a lot of people. You have given a lot of us hope that we won’t be stuck in our homes wearing earplugs all day and having no life. You have given us all hope. That means a lot.

What kind of homeopathy doctor did you see? I need to find the right one. So you can definitely for sure say that after your pain the homeopathy allowed you to bounce back faster?

Pulsatilla is s cough medicine, right?

Have you tried Ambroxol? Some people claim that it has helped them too.

 

I did have some minor burning and a whole lot of tingling and numbness in my fingertips when touching things like phones and tablets. The weirdest part was touching things with my fingertips would make my ears hurt a lot worse.

I am sorry that I don’t remember how long it took to subside. I think it first started to get better when I started homeopathy. When I started practicing DNRS about a month later I started ignoring the weird finger sensations and eventually I realized that they had gone. The same applies to the painful face symptoms I had, too. If I am having a tougher day than usual the face symptoms might flare up a bit, but I tell myself to stay calm and ignore it.

Watching some of the DNRS success stories was really eye opening for me. There were people with severe chemical sensitivities that said they could smell chemicals no one else could, and it would make their whole face and body burn. I thought, “wow, that is like what happens to me, but with sound as a trigger instead of chemicals.” If brain retraining helped them I figured it was worth a shot.

 

Wow, thank you so much for your kind words! I really hesitated sharing because of how unusual my methods were, and I am still a work in progress myself. I wholeheartedly appreciate your positive feedback.

I was stuck at home in hell for almost a whole year so I completely understand what an absolute nightmare it is! Don’t give up!

I found a “classical homeopath” near me, and I had all of my appointments with her over Skype using subtitles so I didn’t have to go anywhere. I don’t want to sound too crazy, but woman has been my angle. She never made me feel bad or crazy when I described all of my weird symptoms to her, and she had me check in with her over email frequently in the beginning so she could monitor how I was responding to the remedies.

Pulsatilla is used for colds, coughs, ear infections, arthritis, and nerve pain. What’s nice about homeopathy is that a single remedy can be used for multiple symptoms.

I did try Ambroxol a month or two before I started homeopathy. It didn’t seem to help me, and it upset my stomach. I think I took 30 mg three times a day for a few days then quit.

 

Glad to see you back and that you are making progress along the way! Your story is very sad to read (how you were isolated from your kids and homebound) but also inspiring to others in the same position as you are making some progress. Hopefully your symptoms ease and you keep making strides in the right direction!

 

Posts like these give me hope

 

Preach. People refuse to believe this stuff but it’s amazing how much it has helped me just half assing it. I did a similar approach when I had severe hypochondria. I would just think of a disease and boom I felt every symptom. Constantly in the ER and wouldn’t sleep. Took years of a similar approach.

It may not work for everyone but definitely can help some!

 

Hi @Marin, I am so happy to hear you improving! Did your tinnitus improve as well? Did the tones subside/go away and how did it change throughout your recovery period?

 

Could you please hum a few bars about the DNRS process, how it works?

Thanks,
George

 

Thank you for posting this.

It has really given me some hope in a dark time. This Christmas has been very difficult and isolating. I am currently suffering from pain 24x7 and am in constant fear of my 3-year-old daughter which is a horrible place to be.

I used to love Christmas loved seeing my friends and family. This year has just seen me sat in a corner with ear muffs on unable to participate unable to communicate just trying to manage this god awful condition, who no one seems to understand or have any empathy for.

I think I could have coped with almost anything better than this, just the constant setbacks make it seem impossible, if I have any day where there's a small let up it only takes a laugh a squeal to take two steps back. It's only my daughter that's keeping me going at this point.

But seeing your post gives me a glimmer of hope that you can get some improvement out of this living hell.

 

@ColinUK, sorry for your pain. I also have had almost 24x7 pain for months. When it gets better for 1-2 days, the next days are mostly worse again. I perfectly understand you that this is a living hell.

@Marin, I am really happy that you improved, I know that you suffered a lot during this time. Also hyperacusis improving after 1.5 years is a fantastic success. I was wondering if you did the DNRS by yourself or were you helped by a therapist? Is there a book or a tutorial for it?

Plus, can I ask what Pulsatilla did you use? I see that there are many of them (pratensis, nuttaliana, grandis, etc). I tried Coffea arabica (bought from remedia-homeopathy) but I did not get any results. I took only 5 pills for 3 days, as the doctor prescribed.

 

Here is the website. It’s pricey so I was hoping to get a summary of the approach here to help decide if it’s for me:

https://retrainingthebrain.com

 

Thanks, so this is the site/program that Marin also used?

It's quite pricey for a 20h tutorial ($349.95) indeed.

 

I can relate because I was in the exact same place last year. I spent last Christmas home alone in silence and in pain. I honestly thought that it was my last Christmas, but thankfully things are SOOOOO much better this year. I spent this holiday season with my kids and family, and I’m eternally grateful for the second chance. I sincerely hope it gets better for you, too. Don’t give up hope!

 

@Taw and @GeorgeLG, sorry for the late response. I did purchase the DNRS program from that link, and you are correct that it’s not cheap. When I bought it they had a 6 month guarantee where you could get your money back if you had no improvements after 6 months. I figured that I’d already spent way more on worthless doctors and supplements so the $350 for DNRS wasn’t horrible knowing I could get it back if the program didn’t work for me.

I did the program on my own, and I did not work with any counselors or coaches. However, there are DNRS and brain retraining coaches if you can afford it, and I have heard of people getting good results with the coaches.

When I started, I couldn’t tolerate any artificial audio, so I just read the transcript that came with the videos. I made sure to do the assigned “homework” and I did the “rounds” to the best of my ability which in the beginning meant barely whispering them because just whispering hurt so bad.

As for a quick summary of DNRS, it involves three main components:

1. Identifying and interrupting habits and thoughts that perpetuate illness. That means stopping negative talk about symptoms, stop focusing on symptoms, and act and think greater than you feel. There is more to it, but those are the key ones that I can remember right now.

2. Practice one hour of DNRS rounds everyday. A DNRS round includes a script that you say out loud to yourself that your brain “is stuck in a rut and causing false messages”, and you also say visualizations to overwrite the wiring in your brain that is currently causing symptoms with new wiring that makes you happy. It is also advised to do at least one round after doing something to trigger symptoms. That’s what they call incremental training.

3. Do what ever you can to elevate and lift your mood throughout the day.

When I started DNRS, it seemed impossible to do any of those things because I was in such horrible condition, but over time I was able to get better and better at them. I still catch myself focusing symptoms from time to time, and when I do I tell myself to stop it and redirect my attention to something that makes me happy.

I hope this info helps. There are lots of DNRS testimonials on YouTube.

EDIT: I should add that brain retraining does not imply that the symptoms are made up or “all in your head”. The symptoms are absolutely real and so is the pain. The brain and the power of belief are both incredibly powerful. Using both have helped me so much.

 

I am so sorry to read that you are in a similarly bad condition. I checked my remedy, and it just says Pulsatilla 200ck. It is the Borion brand and I bought it from a local health food store (Sprouts). That’s interesting that you see different versions of Pulsatilla. I’m sorry that I don’t have more specific information.

I tried Coffea, too, and it didn’t help me, either. If you are open to homeopathy, just keep trying. I really think there is a remedy out there for everyone, but it can take a lot of trial and error to try to find the right one.

 

@Marin, what percentage of your improvement do you attribute to DNRS? Glad you’re doing better.

George

 

I believe that the fact that you are doing so well now is a a great testimonial of the power of the mind - and what brain retraining (through DNRS, CBT, and the likes) can help with to turn things over to the better.

Great reading @Marin, thanks for sharing!