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.
Member
Glad you're better.
