It's taken me a long time to start writing this. I honestly didn't want to be yet another person coming on here with worries and questions about something that may very well be temporary so I thought this was best left for when it has become clear that this may be here to stay. This is going to be long because of it, and for that I apologize. Luckily I am pretty much up to speed on some basic knowledge (I have been reading a LOT and won't need to ask basic questions that have been asked and answered a thousand times already). Anyway, after 2.5 months things have not gotten better as of yet and I could really use some guidance because my combination of symptoms are a bit perplexing and because I lack a clear diagnosis, I am not sure how to proceed. I am going to list everything that could be of importance, even if it seems like overkill.
This forum's active community has taught me so much over the last two months and I am amazed at how many of you come here regularly to offer advice and comfort. You are angels. Thank you. Thank you. Thank you.
I have what I perceive to be moderate tinnitus and hyperacusis that has been going on for a little over two months now. I'm starting to forget timelines and events and hope this will serve as both a record to keep track of everything for my own benefit but also in case someone else has a similar experience and this may just be what they are looking for.
I moved into a new home/apartment one year ago and the previous tenants were clearly smoking in the place. I do have smoke allergies and the smell itself is quite bothersome to me as well. My nose is constantly stuffy because of it. The smell would come out of the air vents when turning on the air conditioning. I am originally from Europe where nobody has AC in their home and I tend to get a sore throat and runny nose from air conditioning. This sounds ridiculous to most Americans but if you are from Europe, you probably know exactly what I am talking about.
Three months ago when outside temperatures started reaching 90 degrees and above (I live in the southern US) I got an upper respiratory infection or cold of sorts and this was exacerbated if now caused by the constant need to blast the AC. I would wake up sick. Sinus pressure, nose completely clogged up, and if I remember correctly my ears were sensitive as well. I have bought 2 air purifiers since then and the smell is much better but it's dusty all the time.
After dealing with this for weeks I tried to restrict the AC from reaching my bedroom and letting only the rest of the house get cool air. so that I could at least sleep without the air blowing on me. Needless to say I endured ridiculously hot temperatures at night but my sinus problems became more manageable as time progressed so I kept doing what felt healthy.
Fast forward. I had an event that may be classified as inducing Acoustic Shock (no official diagnosis but based on my own reading this makes sense) and afterwards was exposed to sound levels of up to 78 dB for about an hour. At the time things seemed fine but then immediately afterwards I noticed that I had tinnitus. At the time I didn't know how loud any of this was but recently I went and recreated the exact same scenario and measured the decibels and there is no way that I was exposed to anything even approaching 85 dB for even just a fraction of a second. I have always had sensitive hearing and fatigue and/or headaches set in long before most people would even be bothered by sounds. I can't stand live music like in a bar for instance.
Since I had ringing in my left ear twice before in my life, and both times it went away after a day or two, I hoped this would go away as well. It didn't.
After several days, maybe even a week later, I had a horrible experience unlike anything I have seen anyone else post about.
An extreme form of hyperacusis set in when I tried to lay down to go to sleep. It was excruciating. The slightest touch to not just my ear but even the side of my face sounded like a thousand nails scratching a chalkboard. Everything became an amplified scraping sound that left me in actual pain and agony. Placing my head on my pillow was unbearable and I had to lay absolutely still to not make any sounds or everything felt like I was being hooked up to a car battery or something. I found a sound generator online that helped me mask the sound and after sheer exhaustion I eventually fell asleep. This never occurred again but I have had hyperacusis (albeit to a milder degree) ever since.
I went to my primary care physician after a couple of days. He said that I had otitis media and that I had a retracted eardrum. He prescribed me antibiotics (Sulfamethoxazole) and Budesonide Nasal Spray (a steroid). I took all the medication as prescribed but saw no improvement after I finished with the antibiotics so I returned to the doctor. He said my eardrum was still retracted. He prescribed me Prednisone. I continued using the nasal spray and took the Prednisone orally.
In the meantime I got a referral to go see an ENT. There was no appointment available for more than two weeks. I desperately called every day to see if there was a cancellation so that I could get my appointment moved up. No luck. I finally went in to see the ENT on July 5th.
An audiologist did an audiology exam and tested my Eustachian Tube. She said my eardrum was not retracted and not perforated, that air passes through my Eustachian tube just fine. After the exam she told me that I had lost 15% of my hearing in the lower frequencies. That the outer most portions of my cochlea had nerve damage and that my ability to understand speech was slightly impaired in my left ear. She said 15% is minor and that I therefore don't need any sort of hearing aid but may need to ask people to sometimes speak in my direction so that I understand them.
I then went in to see the ENT. He basically just parroted what the audiologist said but added that my infection reached the cochlea and caused nerve damage there. I tried to ask him about the sound exposure while my eardrum was retracted. I wanted to know if moderate sound levels could have exacerbated things because of an impaired eardrum. Every time I tried to ask a question he cut me off and said "you already had the nerve damage". I couldn't even get to mentioning the horrible hyperacusis I had that one night when everything really started to get worse or ask him anything of substance. He was interrupting me rudely and impatient and told me "if you would have come in earlier, we could have injected something to reduce the inflammation to save your hearing but it's too late now". I immediately told him that I desperately called every day for two weeks trying to move up my appointment and that they had nothing available. He shrugged his shoulders and said "yea well we are really busy this time of year. Everyone comes in at once". He then said he would refer me to a neurologist and for an MRI.
My medical record clearly states that I am highly allergic to MRI contrast dye. I once had a severe reaction that landed me in the ER with what could only be described as feeling like my blood was boiling. I blacked out so I can't elaborate further but calmly I told the ENT receptionist that they need to just make sure it is an MRI without contrast dye and look at my medical record if need be. She then deliberately told the person on the phone to make an appointment for an MRI "With contrast dye" trying to deliberately emphasize that she is going to do what she wants. At first I thought it was a simple mistake but when I pointed it out again she got snappy and escorted me to a room and shut the door on mez Without getting sidetracked too much the ENT came in and tried telling me that "this is a different contrast dye". Nothing in my medical record indicates which contrast dye I am allergic to so how would he even know. He made it up and when I pointed this out he said there is no such thing as an allergy to contrast dye. He got very annoyed and said "fine, we will do it without dye", stormed out of the room and I never saw him again.
I was about to do the MRI but couldn't go in to get it done because I likely caught something at the ENT office and had a horrible sore throat and fever only days after going there. I went to my primary case physician. According to my doctor it is most likely strep throat. He prescribed me Amoxicillin. I just finished taking it. I am much better now but I still have a bit of post nasal drip and congestion. Not sure how much of it may be allergies though.
As for the neurologist, long story short, the ENT forgot to do the referral even though I have been waiting for two weeks and calling in twice leaving voicemails asking why nobody has contacted me. Turns out they must forgot about me and now nothing is available for another 7 or 8 weeks.
When I went in for the strep throat, my own doctor followed up asking about the tinnitus and even without telling him about the horrible experience he was puzzled and annoyed that the ENT did absolutely nothing for me. He said they were supposed to actually do something, not just tell me to wait and see. Needless to say he gave me a referral to an entirely different ENT. I will be going there in about two weeks.
I told them I want a fully battery of audiology tests. I want to redo everything since I have no faith in the first clinic and for my own piece of mind would like a second opinion.
I went ahead and did a hearing test a few times on my iPhone. It is calibrated to use EarPods. According to that test I have about 40% hearing loss in the lowest frequencies. The chart looks much worse than the one I saw at the audiologist. I assume that being in a sound proof room I was able to pick up on sounds a lot earlier than doing it in my bedroom. Ambient sound levels in my room were about 40dB max so that makes sense to me. That said, the app says it takes those sound levels into account with the microphone, so who knows. I just wanted to get another measurement and 15% hearing loss is far off from these much worse results.
Other possible causes:
Eustachian Tube Dysfunction
While the audiologist may have been able to pass air through the tube, some people on here claim that such a test may not be enough to paint the whole picture. Given the congestion and constant allergies/rhinitis/sinusitis, it would makes sense if my tube is at least partially still filled and thus partially closed. It would make sense then that my hearing is partially impaired. This may not be cause of my tinnitus since I do probably have hearing damage but it would certainly make things worse if sound isn't traveling through the tube as well as it could. I can modulate the sound of the tinnitus by turning my head upside down or shaking it. That creates a bit of a sense of ear fullness and amplifies muffled hearing. It gets louder if I do that but how much this is related to ETD I don't know. I thought it isn't related because rubbing my left eye also makes the tinnitus louder but I can't rule it out either.
TMD
Many years ago my dentist told me that I need to be careful with my TMJ and not eat anything hard to chew. I once or twice had clicking in my jaw after eating something hard. It never happened again so I forgot all about it. About the same time my tinnitus started 2 months ago I was eating hazelnuts almost every day so I now stopped doing that in case it is contributing. Also, from being constantly sick over a 2-3 month period and spending unusual amount of time in bed I have been laying on my jaw a lot so I had some TMJ pain/swelling that I could feel when putting my head on my pillow. Everything feels fine so long as I don't touch it but if I apply any pressure to my TMJ I do feel a small bit of pain/swelling.
TTTS
The symptoms of TTTS most closely match up to my own except for the fact that I do not have fluttering in my ear. I do get a tickling sensation in my ear at what seems like random times, but it feels fairly deep in my ear and possibly caused by fatigue. The only time I have clicking in my ear is when I yawn, and only sometimes. But the sudden fear of damaging my hearing from acoustic shock combined with my hyperacusis constantly resulting in a startle reflex has made me more anxious over the last two months. My tolerance levels are getting worse and if I am exposed to too much noise like going shopping or driving my car, I get physical pain in my ear after a while. It feels very similar to a swollen lymphnode but in my ear. The sound of putting away plates or dropping a fork in a bowl is ridiculously loud and makes my tinnitus worse as well. Anything that could make it worse makes me even more anxious. It is a viscous cycle. I know TTTS is anxiety based and that makes sense. I just don't know how to explain away that there is no fluttering sound or clicking.
I am at a loss when it comes to what I should be doing. On one hand I don't want to walk around with earplugs, thus making my ear even more hypersensitive and likely to see hyperacusis symptoms get worse. On the other hand, if I indeed have TTTS then I need to let it calm down and I can't really do that if I expose my ear to the normal every days sounds that stress it to the point that I get ear pain from the muscle likely contracting. If I knew what exactly the problem is, not only could I do more to facilitate healing but I could also begin to come to terms with everything better. While there is clearly hearing damage and my tinnitus may never go away, our brains adapt and I know that there is a chance that I habituate to it so that I hardly notice it or at least to where it doesn't impair my day to day life. The hyperacusis however is a bigger problem at the moment.
Anyway. I know this is all way too long and detailed but our ears are so complex and there is so much interrelated that I don't want to leave anything out. I do not expect a medical diagnosis from anyone on here, obviously. But perhaps someone here notices something similar to their own experience and can shed some light on all this.
I will keep this updated and definitely post about my progress, if any. I know from personal experience that people on here may be desperate to hear a snippet of good news that relates to their own condition so I hope that I can help by giving back. This forum provided me with so much help over the last 2+ months. I know it is frustrating when people seemingly disappear after they feel better. I'll make sure to let everyone know if there there is anything new that develops.
Thank you all.
RA
This forum's active community has taught me so much over the last two months and I am amazed at how many of you come here regularly to offer advice and comfort. You are angels. Thank you. Thank you. Thank you.
I have what I perceive to be moderate tinnitus and hyperacusis that has been going on for a little over two months now. I'm starting to forget timelines and events and hope this will serve as both a record to keep track of everything for my own benefit but also in case someone else has a similar experience and this may just be what they are looking for.
I moved into a new home/apartment one year ago and the previous tenants were clearly smoking in the place. I do have smoke allergies and the smell itself is quite bothersome to me as well. My nose is constantly stuffy because of it. The smell would come out of the air vents when turning on the air conditioning. I am originally from Europe where nobody has AC in their home and I tend to get a sore throat and runny nose from air conditioning. This sounds ridiculous to most Americans but if you are from Europe, you probably know exactly what I am talking about.
Three months ago when outside temperatures started reaching 90 degrees and above (I live in the southern US) I got an upper respiratory infection or cold of sorts and this was exacerbated if now caused by the constant need to blast the AC. I would wake up sick. Sinus pressure, nose completely clogged up, and if I remember correctly my ears were sensitive as well. I have bought 2 air purifiers since then and the smell is much better but it's dusty all the time.
After dealing with this for weeks I tried to restrict the AC from reaching my bedroom and letting only the rest of the house get cool air. so that I could at least sleep without the air blowing on me. Needless to say I endured ridiculously hot temperatures at night but my sinus problems became more manageable as time progressed so I kept doing what felt healthy.
Fast forward. I had an event that may be classified as inducing Acoustic Shock (no official diagnosis but based on my own reading this makes sense) and afterwards was exposed to sound levels of up to 78 dB for about an hour. At the time things seemed fine but then immediately afterwards I noticed that I had tinnitus. At the time I didn't know how loud any of this was but recently I went and recreated the exact same scenario and measured the decibels and there is no way that I was exposed to anything even approaching 85 dB for even just a fraction of a second. I have always had sensitive hearing and fatigue and/or headaches set in long before most people would even be bothered by sounds. I can't stand live music like in a bar for instance.
Since I had ringing in my left ear twice before in my life, and both times it went away after a day or two, I hoped this would go away as well. It didn't.
After several days, maybe even a week later, I had a horrible experience unlike anything I have seen anyone else post about.
An extreme form of hyperacusis set in when I tried to lay down to go to sleep. It was excruciating. The slightest touch to not just my ear but even the side of my face sounded like a thousand nails scratching a chalkboard. Everything became an amplified scraping sound that left me in actual pain and agony. Placing my head on my pillow was unbearable and I had to lay absolutely still to not make any sounds or everything felt like I was being hooked up to a car battery or something. I found a sound generator online that helped me mask the sound and after sheer exhaustion I eventually fell asleep. This never occurred again but I have had hyperacusis (albeit to a milder degree) ever since.
I went to my primary care physician after a couple of days. He said that I had otitis media and that I had a retracted eardrum. He prescribed me antibiotics (Sulfamethoxazole) and Budesonide Nasal Spray (a steroid). I took all the medication as prescribed but saw no improvement after I finished with the antibiotics so I returned to the doctor. He said my eardrum was still retracted. He prescribed me Prednisone. I continued using the nasal spray and took the Prednisone orally.
In the meantime I got a referral to go see an ENT. There was no appointment available for more than two weeks. I desperately called every day to see if there was a cancellation so that I could get my appointment moved up. No luck. I finally went in to see the ENT on July 5th.
An audiologist did an audiology exam and tested my Eustachian Tube. She said my eardrum was not retracted and not perforated, that air passes through my Eustachian tube just fine. After the exam she told me that I had lost 15% of my hearing in the lower frequencies. That the outer most portions of my cochlea had nerve damage and that my ability to understand speech was slightly impaired in my left ear. She said 15% is minor and that I therefore don't need any sort of hearing aid but may need to ask people to sometimes speak in my direction so that I understand them.
I then went in to see the ENT. He basically just parroted what the audiologist said but added that my infection reached the cochlea and caused nerve damage there. I tried to ask him about the sound exposure while my eardrum was retracted. I wanted to know if moderate sound levels could have exacerbated things because of an impaired eardrum. Every time I tried to ask a question he cut me off and said "you already had the nerve damage". I couldn't even get to mentioning the horrible hyperacusis I had that one night when everything really started to get worse or ask him anything of substance. He was interrupting me rudely and impatient and told me "if you would have come in earlier, we could have injected something to reduce the inflammation to save your hearing but it's too late now". I immediately told him that I desperately called every day for two weeks trying to move up my appointment and that they had nothing available. He shrugged his shoulders and said "yea well we are really busy this time of year. Everyone comes in at once". He then said he would refer me to a neurologist and for an MRI.
My medical record clearly states that I am highly allergic to MRI contrast dye. I once had a severe reaction that landed me in the ER with what could only be described as feeling like my blood was boiling. I blacked out so I can't elaborate further but calmly I told the ENT receptionist that they need to just make sure it is an MRI without contrast dye and look at my medical record if need be. She then deliberately told the person on the phone to make an appointment for an MRI "With contrast dye" trying to deliberately emphasize that she is going to do what she wants. At first I thought it was a simple mistake but when I pointed it out again she got snappy and escorted me to a room and shut the door on mez Without getting sidetracked too much the ENT came in and tried telling me that "this is a different contrast dye". Nothing in my medical record indicates which contrast dye I am allergic to so how would he even know. He made it up and when I pointed this out he said there is no such thing as an allergy to contrast dye. He got very annoyed and said "fine, we will do it without dye", stormed out of the room and I never saw him again.
I was about to do the MRI but couldn't go in to get it done because I likely caught something at the ENT office and had a horrible sore throat and fever only days after going there. I went to my primary case physician. According to my doctor it is most likely strep throat. He prescribed me Amoxicillin. I just finished taking it. I am much better now but I still have a bit of post nasal drip and congestion. Not sure how much of it may be allergies though.
As for the neurologist, long story short, the ENT forgot to do the referral even though I have been waiting for two weeks and calling in twice leaving voicemails asking why nobody has contacted me. Turns out they must forgot about me and now nothing is available for another 7 or 8 weeks.
When I went in for the strep throat, my own doctor followed up asking about the tinnitus and even without telling him about the horrible experience he was puzzled and annoyed that the ENT did absolutely nothing for me. He said they were supposed to actually do something, not just tell me to wait and see. Needless to say he gave me a referral to an entirely different ENT. I will be going there in about two weeks.
I told them I want a fully battery of audiology tests. I want to redo everything since I have no faith in the first clinic and for my own piece of mind would like a second opinion.
I went ahead and did a hearing test a few times on my iPhone. It is calibrated to use EarPods. According to that test I have about 40% hearing loss in the lowest frequencies. The chart looks much worse than the one I saw at the audiologist. I assume that being in a sound proof room I was able to pick up on sounds a lot earlier than doing it in my bedroom. Ambient sound levels in my room were about 40dB max so that makes sense to me. That said, the app says it takes those sound levels into account with the microphone, so who knows. I just wanted to get another measurement and 15% hearing loss is far off from these much worse results.
Other possible causes:
Eustachian Tube Dysfunction
While the audiologist may have been able to pass air through the tube, some people on here claim that such a test may not be enough to paint the whole picture. Given the congestion and constant allergies/rhinitis/sinusitis, it would makes sense if my tube is at least partially still filled and thus partially closed. It would make sense then that my hearing is partially impaired. This may not be cause of my tinnitus since I do probably have hearing damage but it would certainly make things worse if sound isn't traveling through the tube as well as it could. I can modulate the sound of the tinnitus by turning my head upside down or shaking it. That creates a bit of a sense of ear fullness and amplifies muffled hearing. It gets louder if I do that but how much this is related to ETD I don't know. I thought it isn't related because rubbing my left eye also makes the tinnitus louder but I can't rule it out either.
TMD
Many years ago my dentist told me that I need to be careful with my TMJ and not eat anything hard to chew. I once or twice had clicking in my jaw after eating something hard. It never happened again so I forgot all about it. About the same time my tinnitus started 2 months ago I was eating hazelnuts almost every day so I now stopped doing that in case it is contributing. Also, from being constantly sick over a 2-3 month period and spending unusual amount of time in bed I have been laying on my jaw a lot so I had some TMJ pain/swelling that I could feel when putting my head on my pillow. Everything feels fine so long as I don't touch it but if I apply any pressure to my TMJ I do feel a small bit of pain/swelling.
TTTS
The symptoms of TTTS most closely match up to my own except for the fact that I do not have fluttering in my ear. I do get a tickling sensation in my ear at what seems like random times, but it feels fairly deep in my ear and possibly caused by fatigue. The only time I have clicking in my ear is when I yawn, and only sometimes. But the sudden fear of damaging my hearing from acoustic shock combined with my hyperacusis constantly resulting in a startle reflex has made me more anxious over the last two months. My tolerance levels are getting worse and if I am exposed to too much noise like going shopping or driving my car, I get physical pain in my ear after a while. It feels very similar to a swollen lymphnode but in my ear. The sound of putting away plates or dropping a fork in a bowl is ridiculously loud and makes my tinnitus worse as well. Anything that could make it worse makes me even more anxious. It is a viscous cycle. I know TTTS is anxiety based and that makes sense. I just don't know how to explain away that there is no fluttering sound or clicking.
I am at a loss when it comes to what I should be doing. On one hand I don't want to walk around with earplugs, thus making my ear even more hypersensitive and likely to see hyperacusis symptoms get worse. On the other hand, if I indeed have TTTS then I need to let it calm down and I can't really do that if I expose my ear to the normal every days sounds that stress it to the point that I get ear pain from the muscle likely contracting. If I knew what exactly the problem is, not only could I do more to facilitate healing but I could also begin to come to terms with everything better. While there is clearly hearing damage and my tinnitus may never go away, our brains adapt and I know that there is a chance that I habituate to it so that I hardly notice it or at least to where it doesn't impair my day to day life. The hyperacusis however is a bigger problem at the moment.
Anyway. I know this is all way too long and detailed but our ears are so complex and there is so much interrelated that I don't want to leave anything out. I do not expect a medical diagnosis from anyone on here, obviously. But perhaps someone here notices something similar to their own experience and can shed some light on all this.
I will keep this updated and definitely post about my progress, if any. I know from personal experience that people on here may be desperate to hear a snippet of good news that relates to their own condition so I hope that I can help by giving back. This forum provided me with so much help over the last 2+ months. I know it is frustrating when people seemingly disappear after they feel better. I'll make sure to let everyone know if there there is anything new that develops.
Thank you all.
RA
Member
