- May 27, 2020
- 556
- Tinnitus Since
- 2007
- Cause of Tinnitus
- Loud music/headphones/concerts - Hyperacusis from motorbike
Disclaimer: this is a long post about how I developed this condition, so if you want the TLDR and my general thoughts on this condition, scroll to the bottom of the post as I've summarised them there. Given the sequence of events that led to me developing this condition, I felt compelled to share my story in the hope of sparking some kind of additional insight into the pathology of this condition.
So here I am.
After 12 years with tinnitus, I have become a member of another club I never asked to join. This post is about how I got hyperacusis, how I've coped with it, how I've improved and where I'm still struggling. For those who want it, the TLDR is that I have improved significantly. In case you're wondering what I mean by "significantly", I've gone from suicidal to being able to lead a semi-normal life, albeit one with many compromises. By some measures, I could be considered a success story considering how close I was to the brink of ending my own life. On my worst day with this condition, I made a promise to myself that if I improved enough to still be around, I would share my story to help give hope to others. So here I am.
Another reason for sharing my story is that I have reason to believe that the circumstances surrounding my case of hyperacusis may give some further insight into the pathology of this rare condition. I have realised that most ENTs and audiologists are a lost cause and totally behind the research curve, so it's up to some laymans on an internet forum, armed with peer-reviewed medical journals, to triangulate some truth in this clusterfuck of medical confusion surrounding this condition.
Background:
I've been a musician ever since I can remember. I was a classically trained pianist and learned to play on a big grand piano at home - hardly a good start for anyone's ears. Later up in life I took up the acoustic and electric guitar (you can see where this is going). In my late teens, I started clubbing a lot and exposed myself, multiple times, to unhealthy levels of sound. I loved music and wore headphones for years, although I stopped wearing them for music-listening purposes in my early 20s as I started to find them "tiring" on the ears. I also loved playing video games as a teenager - particularly FPS games.
By the age of 17, I developed tinnitus - I'm now 29. In the beginning, it sucked, but like many others on here, I habituated to it and I was able to get on with my life and still do everything I liked doing, including music. In my mid-20s, I secured my dream job after graduating in a political science-related field. As I don't think I'm allowed to go into much detail about my job, all one needs to know is that it involved wearing headphones for extended periods of time – often 8 hours a day. In addition, I had a very noisy commute on the train every day to work in a big city. Roll on recent events.
Recent events:
Five months ago, just before lockdown, my father committed suicide. I mention this because I don't think the effect on the brain of such an event can be underestimated and what conditions physiological changes in the brain can later predispose one to.
To say this was a harrowing and traumatic event would be an understatement. Emotionally, I was (and to an extent, still am) completely and utterly destroyed. I'd be lucky to go a few hours without crying, never mind a few days or weeks. Soon the blame game within the family began and my stress levels, which were already at boiling point, went through the roof. Within a few weeks, I started to notice changes in myself. I became forgetful. My mind would drift in and out of reality. I became agitated, angry and volatile. This was compounded by me being executor of my father's estate and all the stress that that brought on, as well as the lack of human support as a result of lockdown and living alone.
Noticing these changes in myself, I started to do more research into trauma and its effects on the brain. I learned that real physiological changes can happen in the brain as a result of trauma (PTSD), including the enlargement of the amygdala, which are responsible for our flight and fight response, and the shrinking of the hippocampus, which is responsible for memory, spatial navigation, processing and other things. Knowing this made me even more angry - both at my Dad and the entire situation. So I started looking into coping mechanisms to reduce my stress and anxiety, which I never really had before in my life - deep breathing, Wim Hof method, CBD oil, mindfulness, stoicism etc. I mention these things just in case anyone has any comments about them.
About mid-way through lockdown, I also developed an ear wax blockage. I had been putting olive oil drops to help with itchy ears as a result of hay fever season, but I ended up waking one morning not being able to hear out from one ear. Again, due to lockdown, I couldn't get an appointment for an ear wax removal, so I became desperate. I bought a tri-syringe and attempted to syringe my own ears. After multiple attempts at syringing, I did get some relief, but I do wonder at what cost. My head felt strange for days and I had some bouts of vertigo. No hyperacusis though.
The trigger:
Not long after syringing my ears, I decided to go out for a drive one day when lockdown was eased. I was driving down a country-lane when, out of nowhere, a loud motorbike with a modified exhaust, speeding at some ungodly pace, whizzed right by my open car window on my right hand side. As soon as this happened, my heart started racing and my anxiety went through the roof. I knew that I just had been exposed to an extremely loud sound and was worried about further damage that may have been done to my ears given my existing tinnitus. On my way home, I began noticing how I was becoming very sensitive to every single sound, but nothing yet too severe. About an hour after I got home, I noticed a very sharp pain in my right ear—almost as if someone had stuck a knife down my ear canal. It eventually subsided, but I became very worried that it would come back. I went to bed and hoped for the best.
The next day:
Waking up was hell on earth. As soon as I got out of bed, I was wincing at the sound of my own footsteps. Turning on my bathroom tap to brush my teeth was complete agony. Light switches, fridge doors, taps, kettles—everything one would associate with a morning routine—became bombs in an audio minefield. It felt as if the volume of the world was being amplified through concert-level speakers and I was standing with my ear up against them. I was in disbelief. I had read about hyperacusis before, but I never thought I'd find myself in this position. I already knew doctors and audiologists wouldn't be able to help, so I did the only thing I knew I could do: I dived into medical journals to see what I could find. I stocked up on a concoction of anti-oxidants (Vitamins A, C, E, N-Acetyl Cysteine and Curcumin) and sourced high-quality pink sound, which I played at ultra-low volume through my high-quality music studio speakers as smaller devices were a big no no. I also bought ear defenders to use to protect my ears when doing anything that I knew would cause me pain, allowing my ears to only be exposed to the sound from pink-noise. I should note that I avoided wearing the ear defenders in general – they were only there to prevent further damage.
After a week I saw almost no improvement. I was very quickly losing hope and I was now having a full mental breakdown. Suicide seemed glorious compared to this horrific reality of sound-induced pain and, for the first time, I found I was able to forgive my father for his decision to end his own life, as I finally realised he left us because his pain was just too much to bear. I could relate.
Following an intervention from friends and family, I spoke to a doctor and audiologist who told me that hyperacusis can often improve but that it takes time. I promised to give myself that time and that, in the meantime, I would find ways of coping to buy me time. I continued with my cold exposure therapy, deep breathing and CBD oil. My cold exposure therapy was something that I was extremely focused on as I became very interested in the role of the sympathetic and parasympathetic nervous systems and how my own flight and fight response may have been affected by my father's death, which may in turn also have influenced my newly developed startle reflex to sound.
After about 3 weeks and having done some more research on the brain, I decided to also try some magnesium citrate to help bring my anxiety down. I should note that until my father's passing, I had never experienced anxiety before. My hyperacusis made this anxiety x100 worse. Within hours, I noticed an incredible change in my hyperacusis. It was by no means cured, but it felt as if the global volume had been brought down a notch. My footsteps no longer made me wince and typing on a keyboard and clicking on a mouse no longer left me in agony. I still couldn't tolerate many other sounds, but I felt like this small step forward gave me the encouragement I needed to stay the course. I also knew there and then that there had to be some connection between the brain and this condition. I still think damage to the ears is a pre-requisite for developing this condition, but perhaps a multitude of factors are required, as appears to be so in my case.
With this improvement, I continued to listen to low level, high-quality pink noise for 8-10 hours a day. I also decided to include pink noise in the evenings when I was asleep and started to see even more improvement. After a few weeks, this improvement plateaued and I actually started to notice some regression. I was beginning to wonder if my ears needed a break, so I stopped listening to pink noise at night. I soon started to notice some improvement again and it made me realise that ears seem to fatigue more easily when one has hyperacusis, so striking a balance seems to be critical.
Where I am now
The final improvement came when I finalised my father's affairs. I think no longer having to worry about clearing a house and dealing with admin made me a lot less stressed and I do think stress can make this condition worse.
After 3.5 months, my hyperacusis is now at a point where most sounds are tolerable. I can go out for a walk in the local park; I can pop into the local post office; I can go and play tennis; and I can go out for a drive (albeit with the windows up). However, I was and still am struggling with things like cutlery, glasses on glass tables, metallic and ceramic sounds (plates) and small artificial audio sources like iPhone speakers. I still can't play piano or listen to music, I can't go out to a bar or restaurant and I also still can't go back to my job, but considering where I was I know I've come a long way. Being in the kitchen is still like standing at the gates of hell, but thankfully I have a supportive family so I don't have to worry about that too much right now. There are the occasional days when my family and friends seem to lose patience with me, but I've realised that it truly is impossible for one to understand this condition unless they are in it themselves.
My thoughts on this condition
I have lost count of the number of studies I have read about this condition and others associated with it. I have left no stone unturned in trying to establish what all the contributing factors to this condition may be. It is clear to me that some theories deserve some serious merit (such as the type II afferent nerve fibre theory), but there is no doubt we still can't be sure as the pathology is still poorly understood.
My personal opinion is that the damage done to my ears from my lifestyle played a major role in me developing this condition, but I also believe that physiological changes to my brain resulting from my PTSD, following my father's suicide, have changed my flight and fight response and how my body perceives external stimulus, including sound. I therefore think that sound damage and compromised nervous systems/brains are perfect conditions for developing this condition, but I wouldn't go as far as saying that both are required to develop it. I would therefore be interested to hear about other people's experiences, as I read another story on here about someone who developed hyperacusis after their loved one (also their father, I believe) committed suicide. Is it therefore possible that those who have experienced some kind of serious emotional trauma are predisposed to developing a condition such as hyperacusis following loud noise exposure? I also wonder whether regaining some voluntary control over one's nervous system can induce positive changes in this condition.
As far as treatment is concerned, I do think pink-noise (as a concept) has serious merit. However, I think listening to pink noise through any small device is a big no no, making pink noise in its usually prescribed form as dangerous. As someone who has an audio background, small sources are extremely biased to higher frequencies and distort more, which are the worst thing for hyperacusis sufferers. I am therefore completely perplexed as to how TRT with small noise generators can be a recommended therapy for this condition. I'm not a doctor, but my advice to anyone out there would be to source a high-quality pink noise file (recorded at 192 Khz sample rate, wav file - not mp3) and play it through hi-fidelity speakers or pro-level audio speakers. This will make the sound a lot more gentle on the ears and will reproduce a more authentic, true picture of the original recorded waveform.
On another note, I have also recently realised that I have bruxism. It would appear that this condition can cause all sorts of problems associated with the ears. Bruxism seems to be caused by stress, so I would therefore say that stress can make this condition worse. I am currently looking into ways of stopping my bruxism to see if I can make any further progress with my hyperacusis and will report back.
In conclusion, I hope my anecdotal story has shed some additional light into the pathology of this condition, as I have not seen any studies that look into the physiological differences between the brains of hyperacusis and non-hyperacusis sufferers. I welcome any comments/thoughts on it, even if one thinks it doesn't, lol.
Finally, I just wanted to express my love to everyone on here. This journey is horrific and we all deserve a lot more understanding and empathy from doctors and those around us.
So here I am.
After 12 years with tinnitus, I have become a member of another club I never asked to join. This post is about how I got hyperacusis, how I've coped with it, how I've improved and where I'm still struggling. For those who want it, the TLDR is that I have improved significantly. In case you're wondering what I mean by "significantly", I've gone from suicidal to being able to lead a semi-normal life, albeit one with many compromises. By some measures, I could be considered a success story considering how close I was to the brink of ending my own life. On my worst day with this condition, I made a promise to myself that if I improved enough to still be around, I would share my story to help give hope to others. So here I am.
Another reason for sharing my story is that I have reason to believe that the circumstances surrounding my case of hyperacusis may give some further insight into the pathology of this rare condition. I have realised that most ENTs and audiologists are a lost cause and totally behind the research curve, so it's up to some laymans on an internet forum, armed with peer-reviewed medical journals, to triangulate some truth in this clusterfuck of medical confusion surrounding this condition.
Background:
I've been a musician ever since I can remember. I was a classically trained pianist and learned to play on a big grand piano at home - hardly a good start for anyone's ears. Later up in life I took up the acoustic and electric guitar (you can see where this is going). In my late teens, I started clubbing a lot and exposed myself, multiple times, to unhealthy levels of sound. I loved music and wore headphones for years, although I stopped wearing them for music-listening purposes in my early 20s as I started to find them "tiring" on the ears. I also loved playing video games as a teenager - particularly FPS games.
By the age of 17, I developed tinnitus - I'm now 29. In the beginning, it sucked, but like many others on here, I habituated to it and I was able to get on with my life and still do everything I liked doing, including music. In my mid-20s, I secured my dream job after graduating in a political science-related field. As I don't think I'm allowed to go into much detail about my job, all one needs to know is that it involved wearing headphones for extended periods of time – often 8 hours a day. In addition, I had a very noisy commute on the train every day to work in a big city. Roll on recent events.
Recent events:
Five months ago, just before lockdown, my father committed suicide. I mention this because I don't think the effect on the brain of such an event can be underestimated and what conditions physiological changes in the brain can later predispose one to.
To say this was a harrowing and traumatic event would be an understatement. Emotionally, I was (and to an extent, still am) completely and utterly destroyed. I'd be lucky to go a few hours without crying, never mind a few days or weeks. Soon the blame game within the family began and my stress levels, which were already at boiling point, went through the roof. Within a few weeks, I started to notice changes in myself. I became forgetful. My mind would drift in and out of reality. I became agitated, angry and volatile. This was compounded by me being executor of my father's estate and all the stress that that brought on, as well as the lack of human support as a result of lockdown and living alone.
Noticing these changes in myself, I started to do more research into trauma and its effects on the brain. I learned that real physiological changes can happen in the brain as a result of trauma (PTSD), including the enlargement of the amygdala, which are responsible for our flight and fight response, and the shrinking of the hippocampus, which is responsible for memory, spatial navigation, processing and other things. Knowing this made me even more angry - both at my Dad and the entire situation. So I started looking into coping mechanisms to reduce my stress and anxiety, which I never really had before in my life - deep breathing, Wim Hof method, CBD oil, mindfulness, stoicism etc. I mention these things just in case anyone has any comments about them.
About mid-way through lockdown, I also developed an ear wax blockage. I had been putting olive oil drops to help with itchy ears as a result of hay fever season, but I ended up waking one morning not being able to hear out from one ear. Again, due to lockdown, I couldn't get an appointment for an ear wax removal, so I became desperate. I bought a tri-syringe and attempted to syringe my own ears. After multiple attempts at syringing, I did get some relief, but I do wonder at what cost. My head felt strange for days and I had some bouts of vertigo. No hyperacusis though.
The trigger:
Not long after syringing my ears, I decided to go out for a drive one day when lockdown was eased. I was driving down a country-lane when, out of nowhere, a loud motorbike with a modified exhaust, speeding at some ungodly pace, whizzed right by my open car window on my right hand side. As soon as this happened, my heart started racing and my anxiety went through the roof. I knew that I just had been exposed to an extremely loud sound and was worried about further damage that may have been done to my ears given my existing tinnitus. On my way home, I began noticing how I was becoming very sensitive to every single sound, but nothing yet too severe. About an hour after I got home, I noticed a very sharp pain in my right ear—almost as if someone had stuck a knife down my ear canal. It eventually subsided, but I became very worried that it would come back. I went to bed and hoped for the best.
The next day:
Waking up was hell on earth. As soon as I got out of bed, I was wincing at the sound of my own footsteps. Turning on my bathroom tap to brush my teeth was complete agony. Light switches, fridge doors, taps, kettles—everything one would associate with a morning routine—became bombs in an audio minefield. It felt as if the volume of the world was being amplified through concert-level speakers and I was standing with my ear up against them. I was in disbelief. I had read about hyperacusis before, but I never thought I'd find myself in this position. I already knew doctors and audiologists wouldn't be able to help, so I did the only thing I knew I could do: I dived into medical journals to see what I could find. I stocked up on a concoction of anti-oxidants (Vitamins A, C, E, N-Acetyl Cysteine and Curcumin) and sourced high-quality pink sound, which I played at ultra-low volume through my high-quality music studio speakers as smaller devices were a big no no. I also bought ear defenders to use to protect my ears when doing anything that I knew would cause me pain, allowing my ears to only be exposed to the sound from pink-noise. I should note that I avoided wearing the ear defenders in general – they were only there to prevent further damage.
After a week I saw almost no improvement. I was very quickly losing hope and I was now having a full mental breakdown. Suicide seemed glorious compared to this horrific reality of sound-induced pain and, for the first time, I found I was able to forgive my father for his decision to end his own life, as I finally realised he left us because his pain was just too much to bear. I could relate.
Following an intervention from friends and family, I spoke to a doctor and audiologist who told me that hyperacusis can often improve but that it takes time. I promised to give myself that time and that, in the meantime, I would find ways of coping to buy me time. I continued with my cold exposure therapy, deep breathing and CBD oil. My cold exposure therapy was something that I was extremely focused on as I became very interested in the role of the sympathetic and parasympathetic nervous systems and how my own flight and fight response may have been affected by my father's death, which may in turn also have influenced my newly developed startle reflex to sound.
After about 3 weeks and having done some more research on the brain, I decided to also try some magnesium citrate to help bring my anxiety down. I should note that until my father's passing, I had never experienced anxiety before. My hyperacusis made this anxiety x100 worse. Within hours, I noticed an incredible change in my hyperacusis. It was by no means cured, but it felt as if the global volume had been brought down a notch. My footsteps no longer made me wince and typing on a keyboard and clicking on a mouse no longer left me in agony. I still couldn't tolerate many other sounds, but I felt like this small step forward gave me the encouragement I needed to stay the course. I also knew there and then that there had to be some connection between the brain and this condition. I still think damage to the ears is a pre-requisite for developing this condition, but perhaps a multitude of factors are required, as appears to be so in my case.
With this improvement, I continued to listen to low level, high-quality pink noise for 8-10 hours a day. I also decided to include pink noise in the evenings when I was asleep and started to see even more improvement. After a few weeks, this improvement plateaued and I actually started to notice some regression. I was beginning to wonder if my ears needed a break, so I stopped listening to pink noise at night. I soon started to notice some improvement again and it made me realise that ears seem to fatigue more easily when one has hyperacusis, so striking a balance seems to be critical.
Where I am now
The final improvement came when I finalised my father's affairs. I think no longer having to worry about clearing a house and dealing with admin made me a lot less stressed and I do think stress can make this condition worse.
After 3.5 months, my hyperacusis is now at a point where most sounds are tolerable. I can go out for a walk in the local park; I can pop into the local post office; I can go and play tennis; and I can go out for a drive (albeit with the windows up). However, I was and still am struggling with things like cutlery, glasses on glass tables, metallic and ceramic sounds (plates) and small artificial audio sources like iPhone speakers. I still can't play piano or listen to music, I can't go out to a bar or restaurant and I also still can't go back to my job, but considering where I was I know I've come a long way. Being in the kitchen is still like standing at the gates of hell, but thankfully I have a supportive family so I don't have to worry about that too much right now. There are the occasional days when my family and friends seem to lose patience with me, but I've realised that it truly is impossible for one to understand this condition unless they are in it themselves.
My thoughts on this condition
I have lost count of the number of studies I have read about this condition and others associated with it. I have left no stone unturned in trying to establish what all the contributing factors to this condition may be. It is clear to me that some theories deserve some serious merit (such as the type II afferent nerve fibre theory), but there is no doubt we still can't be sure as the pathology is still poorly understood.
My personal opinion is that the damage done to my ears from my lifestyle played a major role in me developing this condition, but I also believe that physiological changes to my brain resulting from my PTSD, following my father's suicide, have changed my flight and fight response and how my body perceives external stimulus, including sound. I therefore think that sound damage and compromised nervous systems/brains are perfect conditions for developing this condition, but I wouldn't go as far as saying that both are required to develop it. I would therefore be interested to hear about other people's experiences, as I read another story on here about someone who developed hyperacusis after their loved one (also their father, I believe) committed suicide. Is it therefore possible that those who have experienced some kind of serious emotional trauma are predisposed to developing a condition such as hyperacusis following loud noise exposure? I also wonder whether regaining some voluntary control over one's nervous system can induce positive changes in this condition.
As far as treatment is concerned, I do think pink-noise (as a concept) has serious merit. However, I think listening to pink noise through any small device is a big no no, making pink noise in its usually prescribed form as dangerous. As someone who has an audio background, small sources are extremely biased to higher frequencies and distort more, which are the worst thing for hyperacusis sufferers. I am therefore completely perplexed as to how TRT with small noise generators can be a recommended therapy for this condition. I'm not a doctor, but my advice to anyone out there would be to source a high-quality pink noise file (recorded at 192 Khz sample rate, wav file - not mp3) and play it through hi-fidelity speakers or pro-level audio speakers. This will make the sound a lot more gentle on the ears and will reproduce a more authentic, true picture of the original recorded waveform.
On another note, I have also recently realised that I have bruxism. It would appear that this condition can cause all sorts of problems associated with the ears. Bruxism seems to be caused by stress, so I would therefore say that stress can make this condition worse. I am currently looking into ways of stopping my bruxism to see if I can make any further progress with my hyperacusis and will report back.
In conclusion, I hope my anecdotal story has shed some additional light into the pathology of this condition, as I have not seen any studies that look into the physiological differences between the brains of hyperacusis and non-hyperacusis sufferers. I welcome any comments/thoughts on it, even if one thinks it doesn't, lol.
Finally, I just wanted to express my love to everyone on here. This journey is horrific and we all deserve a lot more understanding and empathy from doctors and those around us.