Welcome to DV Blog (Awareness) - Hyperacusis, Tinnitus & Chronic Pain

 

welcome to DV blog (Awareness). I will be sharing articles, and other material pertaining to Hyperacusis 

Tinnitus & Chronic pain. 

Hoping can be of some help to you in any way. 

Thank you for taking the time to pass by. 

Much love, 

David Vance. 

Amelia's Hyperacusis, Tinnitus & Chronic Pain Story

 

Hyperacusis And Me by : Amelia Does

I am a writer in London Ontario, Canada living with Hyperacusis, Tinnitus & Chronic Pain, and wanted to thank Dave for helping me to share my story.

I have been becoming increasingly sensitive through my whole life. I was the only child of two musicians, so right away there was sound. My parents traveled and played music at bars, and apparently I would go to sleep inside a large drum when no one was playing it. By the time I was a teen, around age 12, along with general teenage angst, I had a short bout of TMJ. My irritation with my parents, who had separated when I was 5, only seemed to grow. It is common for children at the dinner table to develop jaw tension and misophonia, which often stems from hating the sounds of the dinner table, like chewing. Or rather hating being forced to eat with family for whatever reason. 

I have been dealing with increasing Hyperacusis and Tinnitus for two decades now, I of course needed to wear ear plugs & headphones. Down the line I also ended up aquiring Complex Regional Pain Syndrome, I think because of having Hyperacusis for so long. My health worsened to the point where I could no longer use anything to protect my hearing sensitivity: no earplugs, no headphones of any kind, no sound machines, due to my CRPS possibly. Because of the shapes of my ear openings/canals, sounds can produce “extra” noises (similar to tinnitus) that for me can literally last for days. 

Regarding my CRPS, my body above my heart is always in pain, so much so that I can’t lie down, wear a hat or do many things I used to be able to do. Oh, and I can’t go out in the summer, at this time I am sensitive to the light and heat of our (increasingly intense) sun only on my head. 

So, where does all of this terror and horror lead a person? Into quiet, into solitude, into perhaps self-expression and activism. But without outlets, into one’s own head - which can be very challenging. 

I wish I was able to accept and embrace a smaller life. Before the pandemic I was a traveller, now I can’t even take the bus. As I am not able to wear a mask, I have some serious healing to do about how the pandemic restricted my life to sitting on a couch in daily agony.  

Well it did not kill me. I am creating new paths for myself, to regain my life. I am planning a conference on disability in London, Ontario, Canada for this fall. I want the community, who are so isolated and vulnerable, to come together, meet each other, share resources and build esteem and strength. 

The gifts my illness has brought me do not make it worth it in any way. It did not have to be this way. But I have become a kinder, more gentle, more responsible, less selfish person. I am clearer on who I am and what my needs are. I have learned to treat people better, to make the right decisions about my social life, and as a result I have very good people in my life. Years ago I had no friends. I know how to offer encouragement and understanding and how to value other people. I am becoming less judgemental, and eventually, more patient. 

Thank you for listening to my story. 

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