People Whose Tinnitus Has Gotten Worse — Is There a Reason For It?

[geg1992]

For example, many people I've seen has got worse because of one or more of the following reasons:

• Further noise exposure
• Ototoxic medication
• Stress
• Another disorder such as TMJ/Menireres(sp) etc

So basically, if you avoid these and protect your ears as much as possible from loud noise, in theory there's no reason for it to get worse? Obviously there will be times when these are unavoidable, but in the long run, am I missing anything?

It's strange as in 4 months mine has been getting gradually worse and I have no idea why! I'm so worried this trend will continue and I'm worried that I have missed something which may be making it worse.

Thanks!

 

[Alex Senkowski]

Sounds like you're in the circular rut of worrying about your T and thus exacerbating it.

 

[Kaelon]

Hi @geg1992 -

Because Tinnitus is a neurological condition (unless if it's pulsatile, in which case, there is usually a chemical or vascular cause for it), there unfortunately isn't any clear cut-and-dry answer to your question about "why does it get worse over time?" However, @Alex Senkowski is right in that he points out that stress tends to exacerbate and worsen Tinnitus.

Here are a few common factors to consider, but understand that the etiology of your Tinnitus has to be well-established for you to be able to hone in on what might be making it worse:

• If your Tinnitus was caused by auditory over-exposure, or damage to your hearing through either loud noise or some other impact to your hearing organs, continued over-exposure will make your tinnitus worse with time; protecting your hearing is the best hedge against this because this sort of damage is generally unidirectional (i.e., irreversible).
  
  
• If your Tinnitus was caused by ototoxicity, you are more prone to further damage from ototoxic chemicals than someone who has never had an ototoxic reaction. Your mind and auditory system, because it has been damaged, is also more susceptible and sensitive to changes in your chemical intake.
  
  
• If your Tinnitus was caused by neurovascular compression, such as a cerebral loop, arterial conflict with a nerve, or something similar, certain foods, medicines, and behaviors - like additional salt intake - which exacerbate the circulatory system and blood pressure, in general, will make your tinnitus worse.
  
  
• If your Tinnitus was caused by neuromuscular conflict, such as inflammation in the muscles in your head, neck, jaw, or upper back, then any strain to your endocrine system (including stress, lack of sleep, and poor posture) will make the neuromuscular conflict more pronounced.
  
  
• If your Tinnitus was caused by a neurological deficit, such as a brain tumor or a stroke, then it will progressively follow the pathology of the underlying disorder (i.e., it will get worse as the deficit worsens, or improve if the deficit is addressed).

I'm not sure if these generalities are really helpful to you, because really Tinnitus is hard to pin-point what exactly has caused it. But I hope these thoughts will help you consider what you might be doing that can follow a worsening of your condition, as the general pathology of this condition is resolution in 3 months for acute sufferers (a minority); or, a gradual improvement over the first 6 months, and eventual total habituation within 12-18 months for the vast majority of chronic sufferers.

 

[Stink]

Hi @geg1992 -

Because Tinnitus is a neurological condition (unless if it's pulsatile, in which case, there is usually a chemical or vascular cause for it), there unfortunately isn't any clear cut-and-dry answer to your question about "why does it get worse over time?" However, @Alex Senkowski is right in that he points out that stress tends to exacerbate and worsen Tinnitus.

Here are a few common factors to consider, but understand that the etiology of your Tinnitus has to be well-established for you to be able to hone in on what might be making it worse:

• If your Tinnitus was caused by auditory over-exposure, or damage to your hearing through either loud noise or some other impact to your hearing organs, continued over-exposure will make your tinnitus worse with time; protecting your hearing is the best hedge against this because this sort of damage is generally unidirectional (i.e., irreversible).
  
  
• If your Tinnitus was caused by ototoxicity, you are more prone to further damage from ototoxic chemicals than someone who has never had an ototoxic reaction. Your mind and auditory system, because it has been damaged, is also more susceptible and sensitive to changes in your chemical intake.
  
  
• If your Tinnitus was caused by neurovascular compression, such as a cerebral loop, arterial conflict with a nerve, or something similar, certain foods, medicines, and behaviors - like additional salt intake - which exacerbate the circulatory system and blood pressure, in general, will make your tinnitus worse.
  
  
• If your Tinnitus was caused by neuromuscular conflict, such as inflammation in the muscles in your head, neck, jaw, or upper back, then any strain to your endocrine system (including stress, lack of sleep, and poor posture) will make the neuromuscular conflict more pronounced.
  
  
• If your Tinnitus was caused by a neurological deficit, such as a brain tumor or a stroke, then it will progressively follow the pathology of the underlying disorder (i.e., it will get worse as the deficit worsens, or improve if the deficit is addressed).

I'm not sure if these generalities are really helpful to you, because really Tinnitus is hard to pin-point what exactly has caused it. But I hope these thoughts will help you consider what you might be doing that can follow a worsening of your condition, as the general pathology of this condition is resolution in 3 months for acute sufferers (a minority); or, a gradual improvement over the first 6 months, and eventual total habituation within 12-18 months for the vast majority of chronic sufferers (the vast majority of constant tinnitus sufferers, sadly).

the best post i read in weeks you are genius thank you

 

[geg1992]

Sounds like you're in the circular rut of worrying about your T and thus exacerbating it.

That's what I thought. It doesn't bug me too much at the moment, I don't respond to it but I know it's there. Just annoying as I hear

Hi @geg1992 -

Because Tinnitus is a neurological condition (unless if it's pulsatile, in which case, there is usually a chemical or vascular cause for it), there unfortunately isn't any clear cut-and-dry answer to your question about "why does it get worse over time?" However, @Alex Senkowski is right in that he points out that stress tends to exacerbate and worsen Tinnitus.

Here are a few common factors to consider, but understand that the etiology of your Tinnitus has to be well-established for you to be able to hone in on what might be making it worse:

• If your Tinnitus was caused by auditory over-exposure, or damage to your hearing through either loud noise or some other impact to your hearing organs, continued over-exposure will make your tinnitus worse with time; protecting your hearing is the best hedge against this because this sort of damage is generally unidirectional (i.e., irreversible).
  
  
• If your Tinnitus was caused by ototoxicity, you are more prone to further damage from ototoxic chemicals than someone who has never had an ototoxic reaction. Your mind and auditory system, because it has been damaged, is also more susceptible and sensitive to changes in your chemical intake.
  
  
• If your Tinnitus was caused by neurovascular compression, such as a cerebral loop, arterial conflict with a nerve, or something similar, certain foods, medicines, and behaviors - like additional salt intake - which exacerbate the circulatory system and blood pressure, in general, will make your tinnitus worse.
  
  
• If your Tinnitus was caused by neuromuscular conflict, such as inflammation in the muscles in your head, neck, jaw, or upper back, then any strain to your endocrine system (including stress, lack of sleep, and poor posture) will make the neuromuscular conflict more pronounced.
  
  
• If your Tinnitus was caused by a neurological deficit, such as a brain tumor or a stroke, then it will progressively follow the pathology of the underlying disorder (i.e., it will get worse as the deficit worsens, or improve if the deficit is addressed).

I'm not sure if these generalities are really helpful to you, because really Tinnitus is hard to pin-point what exactly has caused it. But I hope these thoughts will help you consider what you might be doing that can follow a worsening of your condition, as the general pathology of this condition is resolution in 3 months for acute sufferers (a minority); or, a gradual improvement over the first 6 months, and eventual total habituation within 12-18 months for the vast majority of chronic sufferers (the vast majority of constant tinnitus sufferers, sadly).

Thanks very much! Mine was caused by a concert + taking ototoxic medication at the same time. I never expose my self to loud sounds any more except at football/scocer, but wear ear plugs. I have only taken paracetamol since, medication wise.

 

[Kaelon]

Glad to help @geg1992! You mention ototoxicity -- if you had an ototoxic reaction and this led to auditory damage when you had extended over-exposure (or rather, aggravated or amplified this damage disproportionately), then you are going to be extra sensitive to anything that has an ototoxic factor. There have been studies that show that, while ototoxicity is exceedingly rare in the general population, for people who have already had an ototoxic reaction (such as people who were damaged by taking vancomycin to treat an MRSA infection, for example), having subsequent ototoxic reactions and ototoxic-like side effects from seemingly non-ototoxic things or behaviors is exceedingly high. No one really knows why, though there are theories about this.

In other words, if you've had ototoxic reactions, you may want to try detoxing and simplifying your diet, getting plenty of sleep, hydrating yourself, and getting moderate low-impact exercise (like brisk walking) to improve your overall constitution. This might help lessen the impact of whatever ototoxic agents might be amplifying your tinnitus.

 

[geg1992]

Glad to help @geg1992! You mention ototoxicity -- if you had an ototoxic reaction and this led to auditory damage when you had extended over-exposure (or rather, aggravated or amplified this damage disproportionately), then you are going to be extra sensitive to anything that has an ototoxic factor. There have been studies that show that, while ototoxicity is exceedingly rare in the general population, for people who have already had an ototoxic reaction (such as people who were damaged by taking vancomycin to treat an MRSA infection, for example), having subsequent ototoxic reactions and ototoxic-like side effects from seemingly non-ototoxic things or behaviors is exceedingly high. No one really knows why, though there are theories about this.

In other words, if you've had ototoxic reactions, you may want to try detoxing and simplifying your diet, getting plenty of sleep, hydrating yourself, and getting moderate low-impact exercise (like brisk walking) to improve your overall constitution. This might help lessen the impact of whatever ototoxic agents might be amplifying your tinnitus.

Thank you again, you're very helpful.

I am just assuming it was this to be honest. My left ear felt very muffled after the gig, but then the T wasn't so bad. I carried on taking anti biotics and it got gradually worse, so I stopped.

I'm worried for the future due to this ototoxic stuff. I have to go to West Africa as I have family out there, Malarone is known to cause T and I don't want to exacerbate it. At some point in my life I will have to take ototoxic medicine, so it seems like I'm doomed!

 

[Alex Senkowski]

That's catastrophic thinking and it will ultimately do you more harm than any potentially ototoxic drug might do.

 

[Kaelon]

the best post i read in weeks you are genius thank you

Thanks! I'm glad I could help.

 

[Kaelon]

Thank you again, you're very helpful.

I am just assuming it was this to be honest. My left ear felt very muffled after the gig, but then the T wasn't so bad. I carried on taking anti biotics and it got gradually worse, so I stopped.

I'm worried for the future due to this ototoxic stuff. I have to go to West Africa as I have family out there, Malarone is known to cause T and I don't want to exacerbate it. At some point in my life I will have to take ototoxic medicine, so it seems like I'm doomed!

I agree with @Alex Senkowski - you can't avoid all drugs, or stop doing all things that could potentially cause you additional damage, just because you might have a theoretical higher sensitivity to it. What you should take away from this, though, is that -- again, if ototoxicity truly caused your tinnitus -- you are more sensitive to ototoxic side effects, and you just need to be aware about it. FWIW, most ototoxic side effects are temporary and it's uncommon that an ototoxic reaction causes permanent damage (in fact, most ENTs subscribe to the belief that ototoxicity is a temporary phenomenon, and it's generally some underlying structural or chemical problem that has led to cochlear or auditory nerve damage). So if you do have more ototoxic side effects - and you notice in the drugs you take - simply change drugs or discontinue using the one you've been placed on. Malarone, again, only causes Tinnitus in very unusual and hyper-rare circumstances -- it is not, on its own, ototoxic the way that, say, vancomycin is (again, because vancomycin's antibiotic method of activation is known to cause systemic strain when dosages administered exceed therapeutic levels in the bloodstream). Every drug is different, and you generally just need to go into this with both eyes wide open.

Out of curiosity, what antibiotics did you take that you feel gave you tinnitus?

 

[Telis]

That's catastrophic thinking and it will ultimately do you more harm than any potentially ototoxic drug might do.

You can go completely deaf and cause catastrophic tinnitus from ototoxic meds, catastrophic thinking won't do this.

 

[Kaelon]

You can go completely deaf and cause catastrophic tinnitus from ototoxic meds, catastrophic thinking won't do this.

While technically possible, it is extraordinarily rare for someone to "go completely deaf and [acquire] catastrophic tinnitus" from a single, or even short-period regimen of properly-dosed drugs, even if the side effect of those drugs is tinnitus. We're talking almost statistically impossible. Certainly, it has been known to happen, but my reading and research tells me that ototoxic reactions from drugs that list "tinnitus" as a side effect is almost always mild and temporary, and when it's permanent, it is almost always happen because the dosage was incorrect (i.e., it exceeded the proper therapeutic level, or, it wasn't being properly administered or monitored), or because the underlying drug was tainted or misformulated. Antibiotics are often cited as something that can cause an ototoxic reaction, but the reality is that it's unusually rare for a normal course of mainstream antibiotics -- and even a properly monitored course of last-line-broad-spectrum antibiotics, like vancomycin, which is "notoriously" ototoxic -- to lead to any audiological side effects whatsoever. In short, it takes a lot of things going wrong with drugs for them to give you tinnitus, and unfortunately, that does sometimes happen, but it's rare.

Bottom line: no one should, in my opinion, be swearing off proper medical treatment because of the remote chance that they could acquire an ototoxic side effect. There's always a remote chance, by the same logic, that you could die in a terrible plane crash, but statistically speaking, you stand a better chance of winning the lottery and becoming a multi-millionaire. That doesn't mean that you should stop flying.

 

[Telis]

While technically possible, it is extraordinarily rare for someone to "go completely deaf and [acquire] catastrophic tinnitus" from a single, or even short-period regimen of properly-dosed drugs, even if the side effect of those drugs is tinnitus. We're talking almost statistically impossible. Certainly, it has been known to happen, but my reading and research tells me that ototoxic reactions from drugs that list "tinnitus" as a side effect is almost always mild and temporary, and when it's permanent, it is almost always happen because the dosage was incorrect (i.e., it exceeded the proper therapeutic level, or, it wasn't being properly administered or monitored), or because the underlying drug was tainted or misformulated. Antibiotics are often cited as something that can cause an ototoxic reaction, but the reality is that it's unusually rare for a normal course of mainstream antibiotics -- and even a properly monitored course of last-line-broad-spectrum antibiotics, like vancomycin, which is "notoriously" ototoxic -- to lead to any audiological side effects whatsoever. In short, it takes a lot of things going wrong with drugs for them to give you tinnitus, and unfortunately, that does sometimes happen, but it's rare.

Bottom line: no one should, in my opinion, be swearing off proper medical treatment because of the remote chance that they could acquire an ototoxic side effect. There's always a remote chance, by the same logic, that you could die in a terrible plane crash, but statistically speaking, you stand a better chance of winning the lottery and becoming a multi-millionaire. That doesn't mean that you should stop flying.

mmm...I don't think your chances are 1-2 percent dying in a plane crash or winning the lotto. Bad example. But I get your point.

 

[Kaelon]

mmm...I don't think your chances are 1-2 percent dying in a plane crash or winning the lotto. Bad example. But I get your point.

I appreciate it, but we need to be clear about the statistics behind Tinnitus, because it's easy to jump to bad conclusions with the wrong numbers.

You do not have a 1-2% chance to acquire "catastrophic tinnitus" because of an ototoxic drug. The actual annual statistic for ototoxicity and ototoxic side effects of any sort whatsoever in drugs is in the thousandths of percentages (on average - it varies from ototoxic drug to ototoxic drug), and the side effects are almost always temporary and mild, easily reversed by starting or stopping the medication that prompted the reaction. And again, this is only for the people who actually take the drug at any time - so the end chances of having a catastrophic ototoxic side effect, in the general population worldwide, are closer to the statistical odds of winning the lottery: which (again, on average, using U.S. state lotteries as a statistical example) around 1 in 15,000,000 a year. Which, when extrapolated, means that ~400 people on Earth acquire catastrophic Tinnitus from an ototoxic drug every year. It's not zero, but it's pretty close.

It is absolutely true that 2% of the entire population on the planet suffers from Tinnitus at any given time. But, according to the American Tinnitus Association:

• Acute or sudden onset Tinnitus is in most cases caused by damage to hearing from over-exposure or excessive amplification.
• Chronic tinnitus is most usually caused by neuromuscular inflammation, or age-related hearing loss.
• Ototoxic reactions account for a minuscule slice of the 2% pie of humanity.

I would submit, based upon the reading and research that I've done over the past half year, that if someone took a drug and they got Tinnitus soon thereafter, it's more likely that the drug affected an underlying physiological phenomenon that was masking a chronic tinnitus condition for sometime (like vascular inflammation, or a neurological deficit, for example), rather than actually damaged your hearing. Real ototoxicity can include hearing loss, loss of balance and coordination, and auditory hallucinations. Tinnitus, in and of itself, can't be seen as the end consequence of ototoxicity - but as a natural misfiring of the brain's wiring that could be caused by any number of things. And unfortunately, in the vast majority of cases, there is no way to really ever know what caused it.

 

[Telis]

Bottom line: no one should, in my opinion, be swearing off proper medical treatment because of the remote chance that they could acquire an ototoxic side effect. There's always a remote chance, by the same logic, that you could die in a terrible plane crash, but statistically speaking, you stand a better chance of winning the lottery and becoming a multi-millionaire. That doesn't mean that you should stop flying.

This is what I was refurring to. This is statistically FALSE.

 

[Kaelon]

This is what I was refurring to. This is statistically FALSE.

Maybe I misunderstood you then, sorry. I read what you wrote as suggesting that people have a 1-2% chance of acquiring Tinnitus through ototoxicity. But the chances of having a catastrophic ototoxic side effect (1 in 15 million) is about as rare as dying in a plane crash (1 in 11 million). In fact, you stand a better chance of dying in a plane crash than ever having a permanent, debilitating, and catastrophic ototoxic side effect.

 

[Telis]

Maybe I misunderstood you then, sorry. I read what you wrote as suggesting that people have a 1-2% chance of acquiring Tinnitus through ototoxicity. But the chances of having any ototoxic side effect (1 in 15 million) is about as rare as dying in a plane crash (1 in 11 million). In fact, you stand a better chance of dying in a plane crash than ever having an ototoxic side effect.

Ok thanks. If this is a fact you are indeed correct. Can I ask please where you get the 1 in 15 million?

 

[Kaelon]

Ok thanks. If this is a fact you are indeed correct. Can I ask please where you get the 1 in 15 million?

This was a figure provided by a lecturer from the American Academy of Otolaryngology - Head and Neck Surgery, during a symposium on scientific research behind hearing disorders that I attended in the winter (unfortunately, the lecture was generally more about labyrinthitis than it was about tinnitus). He indicated that the American Academy of Audiology had conducted research in the 1990s that concluded the general risk to the public at large of ototoxicity from taking medication was about 1 in 15,000,000. I never found the original study, but I don't doubt this as I've heard several well-respected ENTs that I've met with from Massachusetts Eye & Ear Infirmary here in Boston repeat the same statistic and dissuade me from thinking that I may have had an ototoxic side effect to a normal drug I had been properly taking for years.

This is not to say that ototoxic reactions don't happen every year. Quite the contrary: they do happen, and hundreds of people will get catastrophic ototoxic reactions every year. But in the grand scheme of things, it's exceedingly rare.

I will close by saying that the research I have read about ototoxicity comes with one big disclaimer: aside from the American Academy of Audiology's study in the 1990s, there hasn't been any widespread statistical evaluation of ototoxicity (as a public health risk), but instead most studies focus on the risk of individual drugs and the dosage levels (amounts, and duration over time) at which they cause a toxic reaction. Finally, the ototoxic reaction on a per-drug, dosage level, and duration is further classified: by balance (vestibular system), by hearing (including tinnitus), or other. This is all to say that because this risk isn't widespread, people focus instead on the small pools where the risk is higher.

It's important to remember that "ototoxic" is a term that causes a lot of panic in the Tinnitus community, because it's mis-applied. Anything that is "ototoxic" has the potential to damage your hearing, by definition. But your chances of having an ototoxic reaction -- of activating that potential -- is a risk level that is determined through statistics, based upon individual drugs and their dosage levels. It's not some phantom risk out there waiting to strike us down like a disease is; it's a factor we just need to be aware of, and prioritize it accordingly.

 

[MattK]

Yep there is a reason. There is also a reason we have tinnitus in the first place. The challenge is in determining what the reason is and having the ability to do something about it.

 

[Telis]

This was a figure provided by a lecturer from the American Academy of Otolaryngology - Head and Neck Surgery, during a symposium on scientific research behind hearing disorders that I attended in the winter (unfortunately, the lecture was generally more about labyrinthitis than it was about tinnitus). He indicated that the American Academy of Audiology had conducted research in the 1990s that concluded the general risk to the public at large of ototoxicity from taking medication was about 1 in 15,000,000. I never found the original study, but I don't doubt this as I've heard several well-respected ENTs that I've met with from Massachusetts Eye & Ear Infirmary here in Boston repeat the same statistic and dissuade me from thinking that I may have had an ototoxic side effect to a normal drug I had been properly taking for years.

This is not to say that ototoxic reactions don't happen every year. Quite the contrary: they do happen, and hundreds of people will get them every year. But in the grand scheme of things, it's exceedingly rare.

This is hard for me to believe. In fact I don't believe it at all. Having said that, it doesn't matter what I believe. Nothing is proven either way. All I know is that it happened to me at my life peak mentally and physically, I have lost half my hearing, I will not go down as a statistic of ototoxcicity, I do know this for sure. In fact I was told by a doctor that I can't have tinnitus, and if I do, it will go away 100 percent for sure. He looked at me and laughed, said big strong healthy young guys like you don't get tinnitus. I have never in my life had a issue with my ears until taking ear drops for a blocked ear. I'm sure this is just a coincidence though, never in my life once have had I had ringing to almost total loss of balance and immediate hearing loss. Can I prove this, nope. I'm sure most people get laughed at the doctors office if they blame it on the drugs that the doctors get paid to hand out. Even after my ENT visit, she said she didn't know what caused it but doubted it was medication. So no, I don't believe these stats for a second. I have talked to way too many people here with the same or similar experience. Did their doctors record this somewhere? Or did they get sluffed off and sent home?

 

[Kaelon]

This is hard for me to believe. In fact I don't believe it at all. Having said that, it doesn't matter what I believe. Nothing is proven either way. All I know is that it happened to me at my life peak mentally and physically, I have lost half my hearing, I will not go down as a statistic of ototoxcicity, I do know this for sure. In fact I was told by a doctor that I can't have tinnitus, and if I do, it will go away 100 percent for sure. He looked at me and laughed, said big strong healthy young guys like you don't get tinnitus. I have never in my life had a issue with my ears until taking ear drops for a blocked ear. I'm sure this is just a coincidence though, never in my life once have had I had ringing to almost total loss of balance and immediate hearing loss. Can I prove this, nope. I'm sure most people get laughed at the doctors office if they blame it on the drugs that the doctors get paid to hand out. Even after my ENT visit, she said she didn't know what caused it but doubted it was medication. So no, I don't believe these stats for a second. I have talked to way too many people here with the same or similar experience. Did their doctors record this somewhere? Or did they get sluffed off and sent home?

So it sounds like you've heard the same sort of statistics told to you by your ENT, that doubted that the medication caused this to you, and you felt dismissed and ultimately uncared for. I'm sorry you've been through that. I don't blame you for feeling angry.

This is the tale for all of us Tinnitus sufferers, I'm afraid -- very few of us (have any of us?) have actually found knowledgable, capable medical professionals who know how to adequately diagnose what's going on to us and explain a theory of change that is governing this strange behavior. A lot of this has to do with the science - there's very little scholarship on Tinnitus - and that's a reflection of the circumstance - Tinnitus isn't a disease, so much as it is a malfunction in our brains; at least that much is known for sure. What causes it is anyone's guess, and it truly is a guess in many cases. At the symposium, I asked a couple of questions around defining the causes of Tinnitus and I was sort of stunned at the response from one of the attendees (who I presumed was a medical practitioner): "Does it matter what causes it? That's like wondering what caused a stroke. A lot of factors go into strokes, but you have to deal with the stroke once you have it." It's a very reactive way of approaching medical care, and it speaks volumes of what's going wrong.

I'm also (speaking of statistics) generally of the opinion that until a definitive cure is found, tinnitus will be managed like strokes are, too -- by lowering the risk that people have to acquiring chronic conditions and, for those who have them, teaching them how to be rehabilitated after they have contracted it.

 

[Telis]

So it sounds like you've heard the same sort of statistics told to you by your ENT, and you felt dismissed and ultimately uncared for. I'm sorry you've been through that.

This is the tale for all of us Tinnitus sufferers, I'm afraid -- very few of us (have any of us?) have actually found knowledgable, capable medical professionals who know how to adequately diagnose what's going on to us and explain a theory of change that is governing this strange behavior. A lot of this has to do with the science - there's very little scholarship on Tinnitus - and that's a reflection of the circumstance - Tinnitus isn't a disease, so much as it is a malfunction in our brains; at least that much is known for sure. What causes it is anyone's guess, and it truly is a guess in many cases. At the symposium, I asked a couple of questions around defining the causes of Tinnitus and I was sort of stunned at the response from one of the attendees (who I presumed was a medical practitioner): "Does it matter what causes it? That's like wondering what caused a stroke. A lot of factors go into strokes, but you have to deal with the stroke once you have it." It's a very reactive way of approaching medical care, and it speaks volumes of what's going wrong.

The ONLY motive I have is to tell my story to help others. Not to scare people or to advise against anything. I would have loved someone to have given me a heads up before taking any medications. I have been lucky in my health and just didn't know. I realize this is my own ignorance that put me here, I just didn't consider any risks in taking medicine. If I would have known, would I of taken the meds? I honestly don't know, but at least I would have known the potential risks.

 

[Kaelon]

The ONLY motive I have is to tell my story to help others. Not to scare people or to advise against anything. I would have loved someone to have given me a heads up before taking any medications. I have been lucky in my health and just didn't know. I realize this is my own ignorance that put me here, I just didn't consider any risks in taking medicine. If I would have known, would I of taken the meds? I honestly don't know, but at least I would have known the potential risks.

Out of curiosity, what medicine did you take that caused your condition, and what exactly happened?

 

[svintegrity]

@Kaelon I really liked your explanation of the different etiologies of tinnitus. If only the ENTs and audiologists were so informed! I have been trying to explain to the ENTs, audiologists, and TMD specialists I have seen the importance of a differential diagnosis for tinnitus. I only get met with blank stares. And these are the supposed specialists.

I would add a few points about vascular compression:
1) Can it be located through imaging?
2) Is it safely accessible?
3) Do you have a qualified team of neurosurgeons?

If so, you might be a candidate for microvascular decompression. With microvascular compression, your symptoms may get worse as your condition worsens.

Thank you for such a succinct description of a differential diagnosis of tinnitus.

 

[linearb]

My tinnitus was stable from 1999-2009. I was on benzos for a little more than half of that period, withdrawing completely in 2006. Tinnitus was more noticeable without benzos, of course, but stayed stable for those years none the less.

It got worse after a further acoustic trauma in 2009.

I think it has been stable since.

 

[svintegrity]

@linearb What was the original cause of your tinnitus? If I recall, your taper off of Benzos was rough?

 

[ampumpkin]

Hey @Kaelon as for me, ototoxic meds are the cause of my T. I took antidepressants (SSRI) in 2007 and the T started while on them. I was stable from 2007 until 2014, 100% habituated. In 2014, I took clarythroMYCIN (known as BIAXIN) in Canada and I went almost deaf for a week. My hearing came back but my T remained louder. I am now almost 100% habituated for the second time.

From 2007 until 2014, I took other ototoxic meds (Cipro which is known to have caused T for some people on here) and I had no T increase.

 

[linearb]

@linearb What was the original cause of your tinnitus? If I recall, your taper off of Benzos was rough?

both benzo tapers were pretty hellish, yes. Never again, unless I'm a bigger fool than I think...

my tinnitus and similar visual issues started around the same time in 1999, as I recall. I'd had a bunch of prior drug exposure, had a history of anxiety issues, and was under unusual stress. I had also gotten HSV-1 in the months leading up to this, and if I go all the way back to the beginning of my story I was born prematurely and subjected to a lot of harsh light/stimulation during the first weeks of my life.

Your guess is as good as mine

 

[ampumpkin]

@Kaelon My ENT also told me that ototoxic meds were probably not the cause of my T. He told me he had never seen a permanent case in his whole career but had seen cases where the meds caused partial deafness but it always came back to normal.

I am no doctor but for sure, the meds were the cause of my T and my T increase. I was not taking anything else at the time.

It sucks but my best bet was habituation. I am now living a normal and happy life but it was VERY hard in 2007 and even harder in 2014 when it increased. I always carry earplugs in my purse wherever I go.

 

[ampumpkin]

Also, I had no hearing loss at onset, my auddiogram was perfect in 2008 and perfect in 2014. No changes in 6 years. I am 32 years old. I basically hear everything, my ENT said I had 105% audition. It's just my T that causes an additional sound over normal sounds... like a ghost sound.

I do believe that my auditory system "healed" after taking meds. At onset, my T was very reactive and it cleared in about 2-3 months. In 2014, my T became reactive +++ like a frying pan in my head (city traffic, shower, water faucet, public transport, caused my T to react). It took about 8-9 months before the reactive component cleared completely. Now a year later, my T almost doesn't react anymore...