The Challenges Of Living With Hyperacusis ( Noise Sensitivity)

The Challenges Of Living With Hyperacusis. What is Hyperacusis?  And why is hyperacusis such a misunderstood and extremely challenging condition?

So What Is Hyperacusis?

Hyperacusis is an abnormal sensitivity to sound. For those suffering from severe hyperacusis, especially very painful hypersensitivity, it can be an extremely debilitating hearing condition that doesn’t just cause discomfort but for someone like myself at times horrendous pain. Now sadly some people confuse Hyperacusis with Misophonia which is a dislike to particular sounds. There is also a perception that the person is experiencing just sensitivity and uncomfortableness but for some of us the pain can be literally so painful it can feel like someone is stabbing you in the ear.

My Own Story Living With Hyperacusis

I was always slightly more aware of sounds than my siblings I would wake up with noises that other people would sleep through. But noise sensitivity only started to become a life-changing condition over 8 years ago after I ended up in ICU with sepsis. Caused by a dental complication that led me to have nerve damage, lockjaw, and osteomyelitis. Now I had previous weakness in this area, previous nerve damage, and trauma from an injury, and a rare medical condition that left me quite vulnerable to temporomandibular issues.

But anyway after recovering from sepsis, which left me with a lot of weakness, and nerve damage down the right side of my face, neck, and body. I developed a lot of problems with certain levels, and types of sounds to my right ear, that would literally cause me to lose my balance. I also had developed a complex movement disorder and what is regarded as non-epileptic seizures which all seem to be seriously triggered by vibration and noise.

Now the level of noise sensitivity and pain in my right ear became so unbearably painful that I couldn’t handle so many everyday sounds. My ear and jaw would become very warm and at times the muscles in my jaw would twitch. The horrendous pain was one thing the effect on my conscious and my functioning was something else. It would be like this weird surge of electrical energy in my bring that would like short circuit.  I would end up in pain for days. But despite this level of disability, no Doctor would send me to get my ear checked or tested.

Now initially there was more focus on the cause of other issues, I had the complex movement disorder, non-epileptic seizures, and other neurological issues I had, fine motor skill issues I had. But no one could give me any answers. From the beginning, I believed the pain inside my ear alongside the amount of muscle weakness and the nerve damage I had was creating a vicious circle. But I was simply told there was nothing we can do for you, you just have to live with your conditions. Issues which made me housebound because I would have no control over my body. My body would go into constant violent jerking and spasms so I wouldn’t be able to walk outside etc. And the pain in my ear would be so painful as Tom Maholchic in the video Hyperacusis with Pain describes the sound “explodes in my head” and as another person says in this video is “like an ice pick in my ear”

My Diagnosis Of Hyperacusis

Now to get a proper diagnosis of hyperacusis one of the tests you need to get is a ULL uncomfortable loudness level test. But in many areas sadly this is not readily available from the NHS and well even more challenging is that many doctors don’t even realise that Hyperacusis is an actual real condition, my G.P. didn’t. So despite noise sensitivity for years, increasing levels of pain, and seizures, and doing everything I possibly could to help myself I still hadn’t been seen by an audiologist.

It was only when I discovered I could get a private hearing testing at home which would include a ULL test that things changed. The audiologist was very surprised at what the ULL test showed in relation even to the decibels that correlate with normal speech. For this reason, the audiologist sent a letter to my GP recommending further testing. But even when I finally saw an ENT specialist and the audiologist couldn’t complete the test because of the harm it was having on me. The Dr had no interest in trying to help me,  he was extremely dismissive.

I was then sent to a Tinnitus Clinic, given information sheets and recommendations to treat tinnitus, with only a tiny paragraph that mentioned a bit about hyperacusis. At least in this clinic the practitioner actually asked me a lot of questions especially around my underlying medical conditions, the injury I had, and she was also very interested in the research that I had done. She was honest that the clinic didn’t really treat hyperacusis, she commented they knew nothing about Lyme Disease which is known to cause hyperacusis and other neurological issues and my particular issues were very rare. So I had to find my own solutions in how to live with hyperacusis, how to reduce and treat my sound sensitivity/

The Difficulties Of Living With Hyperacusis

The biggest problem I believe living with hyperacusis for many is that firstly many Doctors and medical professionals don’t actually realise that is a real condition one that can be extremely disabling. A seriously under-researched condition, and as MD Timothy Hain suggests one most in audiology appears to have very outdated views.

Many sufferers living with Hyperacusis are neglected and discriminated against because of myths around sound sensitivity. Some people might find some noises annoying, uncomfortable while others suffer tremendous pain like me. Those few hyperacusis with pain rarely get any help, support, or treatment. Although there is a lot more types of treatment available in the United States.

The facts are sound sensitivity is not something that is well researched or something that many neurologists or audiologists actually study. And then even worse some confuse hyperacusis with misophonia ( fear of loud sounds). Now I also have Parry Romberg’s Disease and I have also have had more than a few diagnoses of different conditions some that are including in my list of different causes of hyperacusis.  I have a lot of underlying complex challenges other than injury actually known to be linked with Hyperacusis so it was very surprising that I had to wait so many years to get a diagnosis.

Different Causes Of Hyperacusis

According to Timothy Hain MD, it is considered Hyperacusis may be associated with damage to the inner ear but there is a lot of debate around that. We do know there are many different conditions and causes linked to hyperacusis these include

• Autism Spectrum Disorders, Aspergers
• Chronic Noise Exposure, such as a noisy working environment
• Central Nervous System Disorders, Brain stem issues
• Deficiencies – Magnesium
• Disrupted attenuation reflex as seen in Bells Palsy, M.S,  Menieres Disease
• Medication – Certain medications for example the antibiotic Ciprofloxacin, psychoactive drugs  LSD, methaqualone, phencyclidine (angel-dust)  have been associated with hyperacusis.
• Head Injury Of Trauma
• Late- Stage Lyme Disease
• Nerve Damage, Facial Nerve Palsy
• Surgery To The Ear
• Williams Syndrome, a genetic disorder where hyperacusisis a symptom.
• Toxicity, Oxotoxicity one reason why you should avoid the overuse of ear drops, get the right medical treatment for ear infections, and ear wax removal.

The reality is according to Haines it is time the audiology community starts realising that hyperacusis sufferers are not the cause of their disease. For a long time, Hyperacusis was viewed by some as psychologically when it is simply an area of medical science that we don’t know enough about.

Different Treatments For Hyperacusis

Although presently there is no technical standard treatment for Hyperacusis especially for those of us with severe pain. There are many who have sound sensitivity that benefit from de-sensitization programs or relaxation therapy. I personally tried de-sensitization the first few years it made things worse. In fact for me the more I removed myself from the pain, the less pain and other complications I aid. I actually have been a stress management trainer, meditation teacher, and coach for many years, and I actually teach relaxation therapy.

The Doctor who appeared to have no interest in helping, initially told me to stop using earphones or earbuds. But this was completely impractical as exposing myself to even everyday sounds caused me to lose my balance, fall, lose control of my body, have seizures, and be in horrendous pain for days. I couldn’t even walk out the door myself. I could only expose myself to certain sounds for small periods in a healthy way when the inflammation and pain in my jaw, nerves, and ear were reduced.

Now although I am still predominately housebound, I am getting better slowly. I can now listen to the TV if it’s down very low. I can handle normal speech if it’s not at a high pitch, without jerking about or feeling is if I am being stabbed in my ear.

Luckily for me, I have found a combination of things that have helped me reduce the constant high levels of pain. I still can’t go out on my own and certain sounds and pitches cause me to have all sorts of issues but I am getting there. These are a few of the things that I found helpful

1. Dub Earbuds which reduce the decibel of sound in your ear/ears – Invaluable at the initial stages helped me be able to talk on the phone and work online.
2. Herbal Treatment For Bacterial Co-Infections  Associated With Lyme Disease
3. Better Denture – I have a lot of TMJ and rare teeth issues, the better the denture the better support for your mouth
4. Mouth Guard – A well-fitting mouthguard really helped to reduce pain in the jaw and nerves
5. Craniosacral Therapy – I found craniosacral helpful at releasing a lot of cranial pressure, nerve issues
6. Magnesium, Vitamin B6 ( Pyridoxine) – Some suggest magnesium and B6 deficiency can be a cause of hyperacusis
7. Muscle Therapy, Physiotherapy exercises to support the neck and head muscles.
8. Meditation – Thank goodness I learned meditation many years ago, a life safer to cope with extremely challenging situations and of course reduces anxiety and stress.
9. Relaxation Therapy – Helps to relax the muscles, nerves as much as I can  luckily this has been one of my areas of expertise for many years and has helped me cope
10. Visit a Chiropractor to help solve any alignment and trauma injury to the body, this can make a huge difference to many people.

Common Recommendations For Hyperacusis

• Use Of White Noise Machine
• Medical Treatment For Any Ear Infection
• Proper Ear Wax Removal- – Don’t ever use cotton buds.
• Meditation – I am lucky to have been a meditation teacher for many years and thankfully this helped me keep sane.
• Relaxation Therapy – I have taught Relaxation Therapy for many years and for most people with stress-induced hypersensitivity relaxation techniques can be very helpful.
• Stress Management – Stress will increase symptoms of hyperacusis so it is important to manage your stress.
• Trauma Therapy – There is a wide range of trauma therapies available that can be helpful to some types of noise sensitivity or sound intolerances.

Also, it should be a must that if you have any sort of ear pain that you do get it checked, that you get treated for an ear infection and that you always get ear wax removed by a professional.