- Jan 18, 2025
- 29
- Tinnitus Since
- 10/2024
- Cause of Tinnitus
- Noise Exposure, Acoustic Shock & Possible ETD
I am fairly new to the tinnitus experience. Personally, I always assumed it was caused only by continuous exposure to excessively loud music or sudden, extremely loud events like gunshots or concerts. I thought gradual exposure would come with early warning signs, such as some degree of hearing loss. I had no idea that damage could be cumulative or that mine could have been triggered by a brief, unexpected loud sound through headphones, especially one that was not deafening, combined with stress, leading to acoustic shock. I had never even heard of hyperacusis, let alone its much more terrifying counterpart, noxacusis. Had I been aware of these risks, I am certain I would have severely limited my headphone use and still been able to enjoy my life fully.
One of the biggest challenges I faced early on, once the damage was done, was that this information was not well known or easily found through basic online searches. Without knowing the right terms to look for, I struggled to find helpful resources. In fact, I did not even come across this forum until two months in.
Initially, because I felt unwell alongside my sudden tinnitus, I assumed I had an infection. Given how poorly tinnitus is investigated in routine medical care, I will likely never know if that was a contributing factor. This assumption may have led to incorrect treatment from my general practitioner, possibly making things worse. I was diagnosed with Eustachian tube dysfunction (ETD) and prescribed a steroid nasal spray, which only resulted in a patulous Eustachian tube, something I only discovered after suffering with it for nearly two months and conducting extensive research. I had been looking in all the wrong places for information, struggling to understand why my symptoms were so unusual.
At the beginning of this journey, I experienced many strange symptoms beyond the typical ringing or buzzing that most people associate with tinnitus. I still do not fully understand what caused some of them or what continues to cause certain issues. While I know that tinnitus varies from person to person and no two cases are the same, having access to this knowledge early on would have been invaluable. It could have provided me with peace of mind during an incredibly frightening time and helped me take the right steps, rather than being repeatedly dismissed with advice like, "It is just ETD, inhale steam, use the spray, and it will go away eventually" from doctors who, though well intentioned, were following outdated guidance.
For instance, I had no idea that the pain along the side of my head might have been an early sign of noxacusis, that walking outside without ear protection was a mistake, or that agreeing to a dental procedure could be a really bad decision. At the time, I was still under the impression that "people just get used to the ringing" and that "it might go away with time." I had no real understanding of the potential long term consequences of my condition.
Even now, I am still unsure whether I am dealing with early stage noxacusis, tensor tympani syndrome (TTTS), or just some temporomandibular disorder (TMD) caused by stress and anxiety. With no objective tests available, the only way to find out would be through trial and error, which, given the risks, would be reckless. As a result, I have resigned myself to a poor quality of life until a viable treatment becomes available. My only goal now is to preserve whatever function I have left so that I can at least enjoy simple things like watching quiet television or having one on one conversations without pain. With proper early intervention, perhaps I could have avoided ending up in this position.
This is why I strongly believe we need to create a simple fact sheet about these conditions, something that can be easily shared to help others become informed early and prevent worsening or spreading of these debilitating conditions. Even now, I find myself constantly digging through old forum threads and medical papers, trying to piece together what I have experienced, how to move forward, and what to expect.
While we cannot diagnose people or predict how their condition will progress, our community includes so many people with firsthand experience. Surely, we could pool our knowledge to create a broad, easy to understand overview of warning signs, potential risks, and the best steps to take early on.
Having a resource like this readily available would not only help raise awareness but also provide much needed guidance in one accessible place. To my knowledge, no such resource currently exists, and it is something that could make a real difference for people who, like me, are searching for answers.
One of the biggest challenges I faced early on, once the damage was done, was that this information was not well known or easily found through basic online searches. Without knowing the right terms to look for, I struggled to find helpful resources. In fact, I did not even come across this forum until two months in.
Initially, because I felt unwell alongside my sudden tinnitus, I assumed I had an infection. Given how poorly tinnitus is investigated in routine medical care, I will likely never know if that was a contributing factor. This assumption may have led to incorrect treatment from my general practitioner, possibly making things worse. I was diagnosed with Eustachian tube dysfunction (ETD) and prescribed a steroid nasal spray, which only resulted in a patulous Eustachian tube, something I only discovered after suffering with it for nearly two months and conducting extensive research. I had been looking in all the wrong places for information, struggling to understand why my symptoms were so unusual.
At the beginning of this journey, I experienced many strange symptoms beyond the typical ringing or buzzing that most people associate with tinnitus. I still do not fully understand what caused some of them or what continues to cause certain issues. While I know that tinnitus varies from person to person and no two cases are the same, having access to this knowledge early on would have been invaluable. It could have provided me with peace of mind during an incredibly frightening time and helped me take the right steps, rather than being repeatedly dismissed with advice like, "It is just ETD, inhale steam, use the spray, and it will go away eventually" from doctors who, though well intentioned, were following outdated guidance.
For instance, I had no idea that the pain along the side of my head might have been an early sign of noxacusis, that walking outside without ear protection was a mistake, or that agreeing to a dental procedure could be a really bad decision. At the time, I was still under the impression that "people just get used to the ringing" and that "it might go away with time." I had no real understanding of the potential long term consequences of my condition.
Even now, I am still unsure whether I am dealing with early stage noxacusis, tensor tympani syndrome (TTTS), or just some temporomandibular disorder (TMD) caused by stress and anxiety. With no objective tests available, the only way to find out would be through trial and error, which, given the risks, would be reckless. As a result, I have resigned myself to a poor quality of life until a viable treatment becomes available. My only goal now is to preserve whatever function I have left so that I can at least enjoy simple things like watching quiet television or having one on one conversations without pain. With proper early intervention, perhaps I could have avoided ending up in this position.
This is why I strongly believe we need to create a simple fact sheet about these conditions, something that can be easily shared to help others become informed early and prevent worsening or spreading of these debilitating conditions. Even now, I find myself constantly digging through old forum threads and medical papers, trying to piece together what I have experienced, how to move forward, and what to expect.
While we cannot diagnose people or predict how their condition will progress, our community includes so many people with firsthand experience. Surely, we could pool our knowledge to create a broad, easy to understand overview of warning signs, potential risks, and the best steps to take early on.
Having a resource like this readily available would not only help raise awareness but also provide much needed guidance in one accessible place. To my knowledge, no such resource currently exists, and it is something that could make a real difference for people who, like me, are searching for answers.
