Rare Combination of Symptoms — Does Anyone Have a Similar Case?

[Henry Fool]

Hi there,

I'm 43 and have an uncommon set of symptoms, and an unusual series of medical events that I have not been able to find any other cases of. I've seen many ENT's (and other specialists) and they are unable to provide even partial illumination (though I realize that's how this goes so much of the time).

Back in 2016, I experienced overnight SSNHL in one ear, and then the other some unknown days later. I did not realize at the time that I had lost any hearing, it is only looking back that I can put the pieces together. But I noticed that I was having difficulty hearing certain people in noisy environments. I noticed that I had very mild tinnitus on the left side, in addition to what I now know to be tensor tympani syndrome on that side. At some point the same-ish thing happened on the right side, though did not result in tinnitus on that side. I did start to notice I was sensitive to certain loud sounds, like sub-bass and loud hand claps.

I went to the ENT at the time, and hearing test revealed moderate high frequency hearing loss on both sides. I didn't adequately express to the doctor at the time that this was sudden, that I woke up with feeling of clogged ear both times. At the time I thought I had an earwax problem or something.

The hearing loss resembled a presbycusis curve.

Last year, same thing except much much worse. Woke up with clogged left ear, except this time there was now very loud tinnitus. I called the ENT and scheduled an appointment. Because I didn't realize I had lost hearing in that ear right away, he didn't see me until 2 weeks later. I'm still angry at myself for that (and angry at the ENT). Hearing test showed that left side now showed moderately severe high frequency hearing loss. Again, mimicking a presbycusis curve.

In between the two ear events, I had a really nasty bacterial sinus infection too, which doctors suggested were unrelated and "bad luck".

There was concern about a tumor due to the asymmetry. However, a month later, the same thing happened to the right side, though not quite as severe. Result was very loud tinnitus on left side, moderately loud on the right, and a week later, hyperacusis.

A bunch of months later, retest showed stable hearing, so not progressive -- the ENT suggested this ruled out a certain immunological cause, and in any case my blood tests were all normal.

So, since this sudden hearing loss occured in this weird pattern, in one ear after the other, twice over a few years, in a presbycusis curve instead of a flat one, the ENT's have kind of thrown up their hands. I don't have a family history of this sort of thing, just standard old-age presbycusis a couple of generations back -- my parents do not have any of these issues.

Some potential factors which I thought might be worthy of consideration:

As a music teacher I am around pianos several hours a day -- I measured most piano sound I'm around at 80db. Every ENT and audiologist said my hearing loss wasn't noise related. I used to listen to music with headphones but at safe volumes.

Potentially ototoxic drugs -- at the time I was taking a couple of Advil each day for a muscular issue, not for years and years but I would go a few months where I'd be on it. Also very tiny occasional doses of Xanax 0.25 or 0.125, as well as occasional periods of mild alcohol abuse. Most ENT's say don't bother considering drugs as possible cause, though one did caution me against ever taking Advil again.

Chronic anxiety conditions with history of panic disorder, and a 10 year old sleeping disorder. In 2014 I began a very, very stressful living situation as well -- both SSNHL events occurred since then.

Significant physical tightness as a result of anxiety, though blood pressure has never been high (at least when tested), and the last ENT said the bilateral nature of the events wouldn't suggest a vascular etiology. Worth noting that I hadn't really been exercising much during that whole period (though I certainly am now!)

Chronic sinusitis. I actually had sinus surgery a few months ago, though no doctors have suggested any connection. At first, since I did have that nasty bacterial sinus infection inbetween last year's ear events, I felt they had to be related. But no ENTs support that notion.

Doctors also suggest that the audiogram does not look like what virus-induced SSNHL tends to look like.

These events also took place since using a CPAP machine for mild sleep apnea.

I am not given straight answers about whether these symptoms could somehow be genetic despite not having any history of anything sudden like this.

I'm not looking for miracle answers, I just want to feel (hopefully) a little less alone and like a freak for having these strange series of symptoms. And without even the hint of information, and the recurring nature of these events, certainly I'm concerned that I'm doing something that might be triggering whatever this is. And I feel like the profound uncertainty surrounding this condition is hurting my ability to try and habituate to the tinnitus. I realize one of the most important things to do is remove the negative association with the sound, though when the sound reminds me that this has happened a few times before and could happen again at any time, that becomes quite the considerable ask

Pardon the long post. Thank you so much for reading, and for this forum and all the help everyone has already provided me during this journey.

-H

 

[Bartoli]

...the last ENT said the bilateral nature of the events wouldn't suggest a vascular etiology.

...I don't get that part. Surely some vascular problems could affect both ears since it's the same blood that's supplying them with oxygen? Even if your blood work came out ok later on.

 

[humptydumpty69]

I'm interested in the fact that they ruled out immunological because your symptoms are not progressive. Especially since you have chronic sinusitis, it makes me more intrigued at the idea that you have an ongoing autoimmune disorder which was prompted to spike due to the antigenic response towards the sinus infection. Do you know the etiology of your chronic sinusitis? Do you notice any progression of symptoms while having other infections or especially a sinus infection? Do you have any hereditary history of autoimmunity? I know that you have differing symptoms bilaterally, but autoimmunity doesn't always hit mirroring placements identically; and also, if noise exposure is in fact a factor (which it always tends to be in the modern world, and especially for musicians), previous to the trauma you could have been dealing with a differing robustness in each cochlea and not have perceived any symptoms, which allowed for differing manifestations of affliction in each ear; (even sitting at the piano and having the treble more prominent in the right ear and the bass in the left impacts each cochlea idiosyncratically). If you didn't notice any hearing loss for some time after your initial trauma, even possessing the trained ear of a musician it seems likely that there could have been human error involved in your previous concepts of your hearing. Furthermore, if you have a presbycusis curve, that also seems to me to be evidence of mild previous degeneration, since your stereocilia dominos seem to be falling quite orderly and with only just a bit of prompting from your idiopathic ailment. In general many diseases develop due to predisposition, and it is often that we are unaware of those predispositions. Could genetics be a factor? absolutely; does it really matter at this point? I don't think much except for the fact that you could anticipate further natural degeneration, and that you may be able to acknowledge a predisposition to stereocilia damage, which enables you to be more conservative with your music and environmental exposures.

Edit: I'm just speculating though Man, I have no idea what's wrong with you, lol, but I wish you well and sincerely hope that it gets better for you.

 

[humptydumpty69]

Reading though again, the clogged ear is definitely is a sign of inflammation.

Also, since your had the infection in-between traumatic episodes of hearing loss, the immune system may identify a pathogen before it has established itself in the body well enough to present symptoms, and therefore the immune system may exhibit collateral damage due to dysfunction prior to the infection symptomatically presenting itself. Often symptoms are the last thing to manifest regarding infection or injury. Concerning the delay in your hearing loss in one ear, autoimmunity virulence could be delayed (dysfunctional immune systems are wack Man), or also could hit bilateral placements with differing intensity. Although I would wager the differing manifestations of hearing loss were due to one cochlea being more robust than the other; and further concerning cochlear robustness previous to trauma: ototoxicity seems to be a potentiality to me as well, and that previous degeneration may have been prompted and then compounded by factors of noise exposure, ototoxicity, and genetics as varying contributions of a composite; however there is no way to know for certain or prove it.

Edit: Granted, if you had sudden sensorineural hearing loss, and then you had a sinus infection, and then took antibiotics which resulted in ototoxicity which exaserbated the initial idiopathic presentation, then that could explain your second episode of hearing loss. All speculations.

 

[Henry Fool]

Reading though again, the clogged ear is definitely is a sign of inflammation.

Also, since your had the infection in-between traumatic episodes of hearing loss, the immune system may identify a pathogen before it has established itself in the body well enough to present symptoms, and therefore the immune system may exhibit collateral damage due to dysfunction prior to the infection symptomatically presenting itself. .

humptydumpty thank you for such a considered response. I really appreciate it.

The infection thing has always nagged at me, just as you described. Left ear was attacked, then 2.5 weeks later I get tons of infection symptoms, then right ear goes. I did consider that the symptoms were lagging behind the infection by some time.

I wonder though, what sort of pathogen might be present to encourage such an immune response? Especially one which returns 3 years later? Is there some potential environmental hazard in my home environment that I ought to be aware of?

The sinus stuff has always felt suspicious to me. I was having basically chronic sinusitis, and bacterial infections that were not resolving on their own or with antibiotics. CT on sinuses showed blockages to proper drainage, so the sinus doc said that fixing that drainage would help. I haven't gotten a sinus infection since surgery, but I do still have chronic drainage. Only allergy I have is the common dust allergy.

But I'm somewhat aware of a heightened immune response -- when I have something like stomach discomfort, for example, I get an anxious response and my sinuses start draining precipitously more than normal. I've always reasoned that this could be due to vagus nerve hypersensitivity or hyperactivity. And in general, I get muscle inflammation as a response to stress too, so I felt like they're all sort of connected. As a reponse to stress, my body has the expected immune response but maybe on a higher scale than normal? All speculation here too of course.

Thanks again for your thoughts. Do you think it's worth speaking with an immunologist? I don't know exactly which blood tests I have or have not had, and I haven't tried to delve into it because it's all a bit beyond me.

-H

 

[Lane]

Chronic sinusitis. I actually had sinus surgery a few months ago, though no doctors have suggested any connection. At first, since I did have that nasty bacterial sinus infection inbetween last year's ear events

That would be the first place I'd put an inordinate of attention on, with a determination to use a combination of natural treatment options (non-drug) to totally eliminate any residual infection(s) in your sinus cavities. You may also want to check out more of a "mechanical" technique called Nasal Specific. -- Best...

 

[humptydumpty69]

@Henry Fool,

Well firstly, I should say that like you, I'm a classical pianist (or at least I was before I was prompted to this forum), and that I am not a doctor, nor do I have any medical background; all of what I say is just speculations and suggestions based on my past experiences and readings.

So, secondly, I find it validating that @Lane latched on to the chronic sinusitis as well. Lane is a knowledgable person, and he would have better suggestions than I would if it were to be that infection is indeed an ongoing factor regarding the sinusitis. Off the top of my head, I would imagine that specific strains of probiotics or specific herbs could be beneficial for resolving an ongoing infection of that kind, although I would not know which ones. The only reason that I would consider an ongoing infection as opposed to autoimmunity is because with nooks of the body such as the sinuses, relatable to something like a prostate infection, the fact that they have poor vascularity makes it difficult for even potent oral antibiotics to be effective; and often we could see a resurgence of symptoms after an antibiotic dosage is completed.

That being said, to reiterate, I believe that we're dealing with SSNHL, and then 2.5 weeks later a sinus infection, and then more SSNHL, and then even more SSNHL 3 years later? I mean, this is just open to so many possibilities and combinations. If we're going to try to connect them all, initially it could even be something so unlikely as an ear infection of the first ear presenting no symptoms save hearing loss, infection migrates to the sinus cavity, and then finally migrates to the other ear. So I think the fact that symptoms suddenly progressed 3 years later is the real clue to consider; and that the question really is just that, is autoimmunity a factor? I think that in order for you to have such an ongoing sinus infection, you would have to have an underactive immune system (which you attest to the contrary), which doesn't necessarily mean the immune system is weak, but just kind of stupid, relatable to the dysfunction of autoimmunity, but stupid in a different way, being that it is lazy or unaware. So I find it difficult to imagine that at different times you would have both an underactive immune system and an overactive immune system. I think that you would either have had an ongoing infection, or a subtle autoimmune disorder which was stimulated by a pathogen to go into overdrive, and then continued to stay at its new baseline activity, although fluctuating with large spikes and possibly quiescent periods. The latter would explain why you would have a spike 3 years later; which can simply be caused by natural aging, adrenal/endocrine levels fluctuating (which can be quite impactful when someone has chronic anxiety), stress, diet, poor sleep, or absolutely anything at all. With autoimmunity it more often is not if it will progress, but when.

So you asked what kind of pathogen could prompt an immune response? The answer would be really anything: from mold to pollen, food allergens, bacteria to viruses. There are professionals who believe that pathogens are always the trigger to an autoimmune disorder, there are some who do not often relate them, some that think genetic factors weigh heavy, some that suspect pathogens to be the culprit but cannot prove it for certain and so they cannot say; there are some who even believe the simple inoculation of foreign RNA via vaccination may prompt or exacerbate underlying autoimmunity: but it is nearly impossible to prove because it may only be true in people who have predispositions to a specific immune dysfunction, and those people are difficult to identify, and it is hard to know which specific RNA would prompt which specific disorder of a specific person who has a specific predisposition; and not to mention that subjects would have to present with enough severity to display a raised antibody count, and then undergo extensive process of elimination in order to be accurately diagnosed; and so who knows honestly. I think what matters is simply that pathogens are highly suspected to play a pivotal role in the manifestation of autoimmunity, and if not specifically as their causation, than in their exacerbation, which would lead to discernible symptoms.

Should you see an immunologist? Well, I believe that a lot depends on finances and what health care you readily have access to. In my personal experience, the problem with specialists is that they seem to have some narrow vision in that they tend to associate manifestations of diseases with their own specialty. However with autoimmunity, I see this as somewhat of a benefit and that it could be enlightening to have an immunologist's perspective, since again in my experience, specialists seem to somewhat disregard autoimmunity since they do not have much comprehension of it in today's medicine except for in a most superficial sense. Modern comprehension of autoimmunity and the inner workings of the immune ssytem seem to me to be somewhat analogous to current knowledge of the ocean floor. We have no cures, and it is extremely difficult to identify without blatant manifestations of the disease. I had an acquaintance who was diagnosed with systemic lupus, she had blood drawn several times over years with no positive test results; she told me that if I was ever suspicious of an autoimmune disorder to "drag ass into the doctor's office when you feel at your absolute worst and have blood drawn; then the antibody's will show." All of this being said, there are many alternative claims and testimonies to immune modulation, some of which you might find on this forum. Your own suspicions of autoimmunity regarding systemic issues sound quite plausible to me, and that your further investigation of autoimmunity could be prudent. However if you were to in fact prove to suffer from autoimmunity, and found that it did in fact damage your ears, even if you were to resolve the immune dysfunction, it is doubtful that anything but marginal improvements would be made to your hearing; it would mostly be that you managed to stop or slow progression of degeneration; however if other systems in your body are also affected by autoimmune damage, and those tissues, unlike the ears, are actually capable of natural healing, then by attenuating immune response you should realize a decent resolution of whatever that malady may be. I would also keep in mind that like my acquaintance, without blatant and regular manifestations of your symptoms, it is unlikely that you would get a diagnosis from conventional medicine, and that at best you may get some drugs, suspicion of autoimmunity in which you would have to wait for it to progress for a legitimate diagnosis, and some general consolation.

I might suggest that you graze this post regarding immune modulation and consider it. If you have any specific questions, feel free to message me and I'd be happy to try my best to help:

https://www.tinnitustalk.com/thread...nbo-shim-experience.33543/page-33#post-435996



I might also take the liberty of directing you toward my good friend SoundB0und's thread, which if you are unaware of any of his recovery methods, they may benefit you:

https://www.tinnitustalk.com/thread...—-possible-but-not-without-some-effort.40728/



I think that what you are currently doing, educating yourself and developing awareness of your body, are some of the best things that you could be doing, as we cannot expect others to adequately grasp anything which is visceral and specific to ourselves, nor can we expect modern medical services to so prioritize us that they will act with empathy, determination and will in order to understand and ultimately heal us.

In the mean time, not that I can account for your emotional state or fully comprehend your suffering, but it could be positive to acknowledge that you do still have your career and the profundity of music in your life, and that there are many of us on this forum who are without and have had one or both taken from us.

Sincerely my best wishes,

-Humpty

 

[Lane]

it could even be something so unlikely as an ear infection of the first ear presenting no symptoms save hearing loss, infection migrates to the sinus cavity, and then finally migrates to the other ear.

Great post @humptydumpty69 -- It could also be something as unlikely as a gum or tooth infection, including one that could be asymptomatic. Some root canals are notorious for this kind of dynamic. Various kinds of metals in the mouth (especially if they're dissimilar) can also cause problems most people (and professionals) are unaware of.

So I find it difficult to imagine that at different times you would have both an underactive immune system and an overactive immune system.

This actually appears to be a rather common phenomonen in the ME/CFS community. People with ME/CFS get a nasty infection of some sort (such as EBV), and their body can't seem to eliminate or resolve it, even while the immune system tries mightily to do so. It's a very exhausting exercise for the entire body, but interestingly, a chronically revved up immune system often keeps that person from getting colds and flus that most other people get. I've only had 1-2 cold/flu like episodes in the past 30 years or so.

there are some who even believe the simple inoculation of foreign RNA via vaccination may prompt or exacerbate underlying autoimmunity

Many on the ME/CFS forum report that their illness started with a vaccination. Some are more notorious than others, but even seemingly simple vaccines like the flu vaccine can cause this. Vaccines appear to be especially problematic if someone already has a revved up immune system from currently battling a cold or something. Not a good time to get a vaccine!

Modern comprehension of autoimmunity and the inner workings of the immune ssytem seem to me to be somewhat analogous to current knowledge of the ocean floor.

Well put! Couldn't agree with you more. My understanding is medical schools only spend about a week or so on the immune system (with the limited knowedge they have), and only in a fairly superficial way. One of their main points they stress however, is that vaccinations are "safe and effective", and current vaccination schedules should be adhered to. They also are taught how to stress this to their patients.

I think that what you are currently doing, educating yourself and developing awareness of your body, are some of the best things that you could be doing, as we cannot expect others to adequately grasp anything which is visceral and specific to ourselves, nor can we expect modern medical services to so prioritize us that they will act with empathy, determination and will in order to understand and ultimately heal us.

Absolutely some of the best advice I've seen on this forum. I often think of navigating this tinnitus journey as akin to navigating the Oregon Trail back in the early 1800's. They didn't exactly have cell phones, and rest stops, and, and.... They were left to their own devices, and I'm sure most of those intrepid pioneers had their creativity challenged many times over. I think the people on this forum who have the most success are those who adopt an attitude like those early pioneers--get busy and find a solution!

For better or for worse, we're mostly on our own these day in our own unique tinnitus journey. EXCEPT, we have information at our fingertips via the internet that gives us enormous advantages. Especially when it comes to exploring avenues that are "outside the box". Those kinds of avenues are the ones that have helped me most over my many years of dealing with ME/CFS, and now tinnitus and hyperacusis. -- Humpty, thanks again for your great post!

 

[humptydumpty69]

@Lane,

That is very interesting what you said about ME/CFS; and the Oregon Trail for certain! Wonderful word play connecting being without phones and technology to being left to their own devices.

Thanks for all of the love Lane.

 

[humptydumpty69]

@Henry Fool,

You know, I thought to add, I feel that musicians have a great potential for developing a biological intuition, as they have cultivated a profoundly developed neuromuscularity, and consistently concern themselves with all of the subtleties and complexities of that which is invisible; and so if they would only direct this meticulous attention and detailed perceptivity toward their own vessel, they should realize a wonderful concept of somatic awareness.

 

[Zugzug]

Hi there,

I'm 43 and have an uncommon set of symptoms, and an unusual series of medical events that I have not been able to find any other cases of. I've seen many ENT's (and other specialists) and they are unable to provide even partial illumination (though I realize that's how this goes so much of the time).

Back in 2016, I experienced overnight SSNHL in one ear, and then the other some unknown days later. I did not realize at the time that I had lost any hearing, it is only looking back that I can put the pieces together. But I noticed that I was having difficulty hearing certain people in noisy environments. I noticed that I had very mild tinnitus on the left side, in addition to what I now know to be tensor tympani syndrome on that side. At some point the same-ish thing happened on the right side, though did not result in tinnitus on that side. I did start to notice I was sensitive to certain loud sounds, like sub-bass and loud hand claps.

I went to the ENT at the time, and hearing test revealed moderate high frequency hearing loss on both sides. I didn't adequately express to the doctor at the time that this was sudden, that I woke up with feeling of clogged ear both times. At the time I thought I had an earwax problem or something.

The hearing loss resembled a presbycusis curve.

Last year, same thing except much much worse. Woke up with clogged left ear, except this time there was now very loud tinnitus. I called the ENT and scheduled an appointment. Because I didn't realize I had lost hearing in that ear right away, he didn't see me until 2 weeks later. I'm still angry at myself for that (and angry at the ENT). Hearing test showed that left side now showed moderately severe high frequency hearing loss. Again, mimicking a presbycusis curve.

In between the two ear events, I had a really nasty bacterial sinus infection too, which doctors suggested were unrelated and "bad luck".

There was concern about a tumor due to the asymmetry. However, a month later, the same thing happened to the right side, though not quite as severe. Result was very loud tinnitus on left side, moderately loud on the right, and a week later, hyperacusis.

A bunch of months later, retest showed stable hearing, so not progressive -- the ENT suggested this ruled out a certain immunological cause, and in any case my blood tests were all normal.

So, since this sudden hearing loss occured in this weird pattern, in one ear after the other, twice over a few years, in a presbycusis curve instead of a flat one, the ENT's have kind of thrown up their hands. I don't have a family history of this sort of thing, just standard old-age presbycusis a couple of generations back -- my parents do not have any of these issues.

Some potential factors which I thought might be worthy of consideration:

As a music teacher I am around pianos several hours a day -- I measured most piano sound I'm around at 80db. Every ENT and audiologist said my hearing loss wasn't noise related. I used to listen to music with headphones but at safe volumes.

Potentially ototoxic drugs -- at the time I was taking a couple of Advil each day for a muscular issue, not for years and years but I would go a few months where I'd be on it. Also very tiny occasional doses of Xanax 0.25 or 0.125, as well as occasional periods of mild alcohol abuse. Most ENT's say don't bother considering drugs as possible cause, though one did caution me against ever taking Advil again.

Chronic anxiety conditions with history of panic disorder, and a 10 year old sleeping disorder. In 2014 I began a very, very stressful living situation as well -- both SSNHL events occurred since then.

Significant physical tightness as a result of anxiety, though blood pressure has never been high (at least when tested), and the last ENT said the bilateral nature of the events wouldn't suggest a vascular etiology. Worth noting that I hadn't really been exercising much during that whole period (though I certainly am now!)

Chronic sinusitis. I actually had sinus surgery a few months ago, though no doctors have suggested any connection. At first, since I did have that nasty bacterial sinus infection inbetween last year's ear events, I felt they had to be related. But no ENTs support that notion.

Doctors also suggest that the audiogram does not look like what virus-induced SSNHL tends to look like.

These events also took place since using a CPAP machine for mild sleep apnea.

I am not given straight answers about whether these symptoms could somehow be genetic despite not having any history of anything sudden like this.

I'm not looking for miracle answers, I just want to feel (hopefully) a little less alone and like a freak for having these strange series of symptoms. And without even the hint of information, and the recurring nature of these events, certainly I'm concerned that I'm doing something that might be triggering whatever this is. And I feel like the profound uncertainty surrounding this condition is hurting my ability to try and habituate to the tinnitus. I realize one of the most important things to do is remove the negative association with the sound, though when the sound reminds me that this has happened a few times before and could happen again at any time, that becomes quite the considerable ask

Pardon the long post. Thank you so much for reading, and for this forum and all the help everyone has already provided me during this journey.

-H

You and I should stay in touch. I also have a bilateral inner ear problem that is not explained by noise or ototoxicity. It came on after a stressful time; I had an autoimmune condition before this. The most likely situation is that my autoimmune disease spread to my inner ears, causing severe tinnitus and hyperacusis. I likely have hidden hearing loss.

Honestly, your story sounds quite similar to autoimmune inner ear disease, which is hard to diagnose. I would be slow to rule it out.

 

[Henry Fool]

And here I thought I had already exhausted my avenues of research -- so much information here to consider.

@Zugzug I believe the reason AIED was ruled out was because of the non-progressive nature of the hearing loss. After the events themselves, the hearing loss remained stable across 3 and then 6 months. Apparently AIED would have showed loss over that time, was my understanding.

The whole autoimmune angle is so interesting, but also so much to learn about and absorb. I can add some additional information, if only to add to the knowledgebase here. So grateful to you all for reading and contributing. I generally try to avoid the forums but this "wait and pray it doesn't happen again" approach, I mean, my brain just wasn't having it.

Again, pardon the long post, as long as I'm putting this down here I may as well be thorough!

In summer 2018, my throat began hurting, and I was finding I was "losing my voice", though it felt different from the standard voice losing. I figured it was just because my teaching job demands I run my mouth all day, and perhaps I was using my voice in a non-ideal way.

The ENT did a laryngoscopy (one of eventually several). He said I had a bacterial infection and put me on antibiotics. I didn't respond to them. We also did a CT scan, which revealed "pan-paranasal sinus mucosal disease", which showed areas where inflamed tissue was preventing proper drainage. He referred me to a sinus surgeon and said I needed surgery right away.

I went to an ENT specializing in the vocal cords, and she did some cool tests that showed I was using my voice in a slightly non-optimal way, and I could do some speech therapy, but it wasn't that big a deal.

I went to a different ENT (my old one, who was miraculously back in my insurance network for a brief window) and he confirmed the presence of infection. He was the first to mention autoimmune, and at the time I had never heard anything about this, and it was frightening. I don't get sick more often than normal, in fact since I wash my hands so much from being around kids, I tend to do pretty well in this area, so the idea that my immune system wasn't strong _enough_ seemed odd. But it was the first time I had heard the word "immunoglobulin"! I thought man, that's a cool word.

I saw the sinus surgeon who looked over my CT and felt I was an edge case. My chronic infections weren't causing extreme pain or anything, it was just a constant lingering sinus pressure with lots of drainage, which it turned out was irritating my throat.

This entire time, I was having arm problems. Granted, I have arm issues periodically as a musician, but it usually clears up with physical therapy. However, this time around, PT wasn't helping, and the hand specialist basically said that my baseline was simply "very tight". It was around this time that I started learning about how chronic stress can affect the body -- I was (and still am) in a very stressful relationship and my stress levels were indeed super high. I also wasn't doing any meditation or exercise to alleviate any of it.

Then the ear stuff happened, and when I went back to the original ENT -- who I'm still mad at for not administering an intratympanic steroid injection on either the left or the right -- he seemed unhappy that I hadn't yet gotten the surgery.

Returning to the sinus surgeon, she completely ruled out any possible connection between the sinus condition and the hearing loss/tinnitus. Nevertheless, over the next few months I worked with her to try and address the sinus issues, because at the very least, perhaps clearing this up might get rid of some of the eustachian tube symptoms which were mildly exacerbating tinnitus and hearing. So she had me do a few rounds of antibiotics, which I did grudgingly, all of which did nothing, except for Cipro, which made my tinnitus go through the roof, and I still thank god it returned to a baseline after stopping. That's when she OK'ed the surgery.

Surgery went well, and although drainage has returned, there are no signs of infection.

Despite what every ENT has said about there being no link between the two, I've always felt that there had to be some link. I asked some sort of general layman questions, like wouldn't the presence of a chronic infection affect my immune system if it's constantly trying to attack the bacteria? "Not really". What happens if a bacterial infection spreads to the inner ear? "If bacteria gets inside the ear, it just kills the ear." Could this have been a virus that attacked my ears? "Maybe but the pattern of hearing loss doesn't seem to indicate it."

Most of my doctors have seemed really knowledgeable! They just haven't put pieces together, there is this unfortunate case where doctors who are awesome in their narrow specialty, don't overlap enough to cover the diagnostic ground necessitated by conditions like this.

Anyway, now I'm trying to learn what everyone's talking about regarding autoimmune conditions, and it's still baffling to me. I don't seem to have the plethora of additional symptoms that would indicate any of the bigtime "conditions with names". Just the ear events, muscle tightness/inflammation, and sinus drainage. I'll search out an immunologist and explore that avenue -- I wonder if such doctors are accepting new patients over videochat!

@humptydumpty69 I'm sorry to hear you cannot enjoy music anymore, is that because of a noise injury? Hyperacusis has done a number in my case, thank god it's calmed down a little, but I still cannot teach without attenuating earplugs, and once I noticed that even moderate piano playing clocks in at 80dB at least, I feel like even if I could tolerate the sound level, I would want to protect. But as we know, last thing you want to do if you have hearing loss and tinnitus, is earplugs to shut out sound, and lock you in with the ringing. I recently got molded earplugs with a 9dB filter (I had been using 16, so we'll see if it's enough attenuation -- hopefully I'll have less difficulty making out what my kids are saying though, which is the goal here). Anyway, thanks again for your thoughts, and I absolutely adore your writing style, for what that's worth!

I appreciate what you said about musicians -- if anything though, I think my hyperawareness has led mostly to paranoia and anxiety I would much prefer to be a dummy about such things!

-H

 

[humptydumpty69]

@Henry Fool,

I'm not sure of how much more help I can be on this subject, but my initial thought is: what indication did the ENT find as to a bacterial infection proximal to the vocal folds? Not responding to the antibiotics, your vocal folds were affected by an ongoing infection, but the following ENT only found issues with aspects of how you neuromuscularly isolate your vocal folds? The 3rd ENT did also confirm bacterial infection, although I wonder for what reason he also mentioned autoimmunity? Could you be more specific about your arm symptoms? The hand specialist also specialized in pianists?

I think that trusting your intuition is important, and if you feel that there are links between events that you should not ignore it. As you say though, you sometimes confuse somatic awareness with paranoia, or perhaps that your intuition/hyperawareness prompts anxiety; I feel that the more that you continue to educate yourself, and to understand that the things which you experience are not mortal concerns, that in those anxious moments you may be able to attain more of a calm and objectivity in regards to your body. Having your hearing effected as you have is one of the worst circumstances of anatomical degeneration which one can experience; acuity is our tether to reality, and without reality we lose ourselves; and so having experienced this, unless you later encounter profound pain, or severe affect of the neurological, cardiac and/or pulmonary systems, you should be able to mentally grapple with just about anything. Our tribulation truly does strengthen us.

This might be obvious, or possibly useless (I like to think not), but I might suggest a potent cannabidiol tincture in order to help with inflammation and anxiety. As I understand it, CBD has been studied for its ability to, not modulate the immune system or reorient its functionality, but simply to quiet and calm dysfunctional immune activity. And so if you do in fact have immune dysfunction, my thoughts come back to your anxiety and a possible psychosomatic stimulation of dysfunctional immune activity. In general, I think that a good route could be to simply implement anything that has been known to improve immune function and immune intelligence which is not also an immune stimulant, (as this could stimulate rogue antibodies and further progress autoimmunity). I have found that, when it doesn't present in blood work, the best way to identify autoimmunity is to experiment with things which might improve it, and to be perceptive of positive changes. Of course these could be many different things: from teas to herbs, diets to exercise, ozone to stem cells, and they are many a rabbit hole to delve down. Now all of this being said, I know that you feel it appropriate to first consult an immunologist, and I do believe that could be fruitful, for your own perspective in the least; and so my only intention is to convey that there are avenues to attenuating autoimmunity outside of conventional medicine, which is valuable knowledge when there is very little within orthodoxy to be done for such a vast category of disease.

I appreciate your sympathy regarding my hearing; and it's very kind of you to compliment my writing. From your voice within your own writing, it seems to me that you have a bit of sanity amidst all of your misfortune, and if that is true, I'm glad for you; and if it's not true, well done pretending.