The mental & psychological aspects kick in - because of the physical damage and limitations experienced from Hyperacusis & Tinnitus

Before Hyperacusis & Tinnitus I lived a normal life, was able to work, go out and have fun with friends, family, explore nature and go on hikes, and felt like a normal human being. Because of my symptoms being severe now, I can no longer do these things, and my life is trapped within four walls. For anyone who hasn't read my story, in a nutshell, I contracted Pain Hyperacusis & Tinnitus from Chemotherapy & Radiation treatments for Non- Hodgkins Lymphoma in 2017, and from subsequent medications I have been on since. Plus Temporomandibular Joint Disorder. I was also in the Music & Hospitality businesses prior to my Lymphoma treatments, which I believe made a significant impact as well.

 
 

 The holidays just passed and not being able to be with my family put a serious damper on my mood. I live five hours away from them, and for me hopping on a train back & forth for a total of 10 hours, plus the noise at these functions, would further damage my conditions. I experienced outbursts like I have never experienced before, and my family had to hear them. I am usually upbeat, and more positive, but with my Hyperacusis & Tinnitus now at a severe level, it’s hard to stick to my old way of thinking, I still do though to the best of my abilities. 

 
 

  I had a family member tell me that I need a psych evaluation because of my recent outbursts, although I have been seeing a psychiatrist already for 3 years. Mental health runs in my family, so they think I could be inheriting something my mother or father had, when in fact this is not true. I'm literally sitting in my room in isolation just wishing I could interact with the world because my Hyperacusis & Tinnitus is so severe, I am pretty much my own best friend, looking at myself everyday. My family has the best of intentions and I love them so much, but when I'm telling them what is happening, and trying to "convey" the right message, going too every lengths to do it, and they still don't get it, it's exceedingly frustrating, everything gets all confused. When I was around them earlier on in 2022, I would hang out with the children and they would scream at a loud 90 dbs, with ear protection on and extra meds added in I would be able to tolerate the noise, but still inside I was falling. I only did this so I could have some joy in my life, and to be around my loved ones. So, because of me being able to do this, some people think that my Hyperacusis & Tinnitus could be all in my head, and not real with me not flinching at all doing these activities. This is far from the truth, when inside it was tormenting. 

It's really important to know that the mental aspect is strong because of the distress people feel from the physical impact of Hyperacusis & Tinnitus, and the limitations that come with it. As explained above, imagine being enclosed between four walls, not able to make phone calls (I only do when absolutely necessary) and it still hurts, not able to go for walks much, and watch other people live their lives on social media etc. It takes a serious toll on someone. It is no way to live, it is literally solitary confinement, like being in prison. Anybody enduring these symptoms at a severe level would go bananas I am most certain, even at a mild level as well. Some doctors think that Hyperacusis & Tinnitus for some may not be real, from the way people act out because of the conditions, the conditions can be labeled as mental from these professionals, and all in the patients head, when in reality it is the complete opposite, and this is what we need the world to know.

 
 The following is another person who also suffers from Hyperacusis & Tinnitus, and he explains in his own words from his own experience, that the mental aspect kicks in because of the physical pain and the limitations we must now live with.

Jerad Rider

“I have pain Hyperacusis, also known as Noxacusis, and the physical ramifications are life-crushing. When it’s severe, like mine, you’re basically a prisoner. The limits it imposes are so strong that you almost can’t do anything. Your quality-of-life is challenged profusely. I’m homebound, forced to isolate, and all things “sound” are off-limits: people; working; living life; all of it, as exposures just make symptoms worse, often permanently. It started from ototoxic reactions and it’s likely damage to my type II nerves, in my opinion, and some medical research is also pointing in that direction. But the emotional stress that comes from Pain Hyperacusis is impossible to dodge. I can’t engage with life; the things I love are gone. Most recently, Christmas was an example of that. To avoid worsening, I had to stay in my room with ear protection, while my family gathered in another room. I was totally left out; didn’t have a choice. Their voices cause me intense pain, even with protection. No one understands this — the horror that impedes and festers; the nightmare that ensues. When your ears go south and Hyperacusis sets in, life’s a paradox. Sound is everywhere and cannot be avoided. By default, an anxiety-filled response comes with the territory. It’s only human to react that way; to hate the torture and devastation.

And to add insult to injury, most doctors don’t understand it, as it’s such a rare condition. Most have never heard of it, even. Last year, when I had leg ulcers, the head doc thought my ear stuff was just anxiety. I wanted to avoid antibiotics because they’re known to exacerbate Noxacusis, and he looked at me with odd suspicion, like a crazed patient who lost his marbles, asking what could be more pressing than my troubled, ailing leg. He didn’t understand it or know what I was facing — how bad this Noxacusis can be; and why it was important to proceed with careful measures. And then he summoned help. He had a nurse come chat with me and ask about my history: if I had ever seen a shrink. She compared herself to me, with a situation she endured. After giving birth to her son, she had these strong emotions; intrinsic, pressing fears that he was in great danger; would always be in danger, too; so much so, in fact, that she exercised extremes. She went the mile with great protection; planned things way ahead; thought about scenarios that made the threats seem imminent. For 10 minutes straight, she spoke to me in child-like tones, as if I, too, faced delusions; a disadvantaged mindset, lost to proper thinking. But situations like that — from the professionals, even — are beyond unacceptable. They make Pain Hyperacusis sufferers feel more alone. We’re misunderstood, even from those establishments we are supposed to count on, and be able to trust, like the beloved medical community. It’s humiliating, sad, and from my lens a massive failure on their part.”

For anyone wanting to help with Hyperacusis in any way, our non-profit Hyperacusis Research is always accepting donations to help fund grants for more researchers, so they can keep on top of looking for our cure. You can donate at. - www.hyperacusisresearch.org 

Thank you so much for reading, much love,

David Vance