Sudden hearing loss - treatment failed because of hypersensitivity to steroids

Ailúron

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I have just gone through the ordeal of sudden hearing loss (this is called SSHL). It has been not only extremely upsetting, but also deeply depressing and discouraging. (This is for those in similar misery from sudden hearing loss, as misery loves company and a grief shared is sometimes half a grief. Most may very well not want to continue reading.)

Back in early April (I mention the month because a number of other people say their sudden hearing loss occurred in early Spring and like me, most often in the left ear - I have no idea why this seems to the typical scenario), I lost 100% of my hearing soon after I woke up in the morning - it was preceded by some strange clicking (almost a smacking sound) in the ear and tinnitus so intense it was painful. I quickly contacted my local emergency clinic and was told it was probably a build-up of earwax against my eardrum, so I put some high-quality wax removal drops in my ear and lay down for this to work. However, when I got up 15 minutes later to let the drops drain out, the noise was gone, but so was ALL my hearing in that ear!

I rushed to the emergency clinic and they found no build-up of wax at all, and I was given an immediate emergency appointment with one of the most reputable ENT specialists in the area who confirmed that my ear canal was clear and I was put on huge doses of prednisone - to which I am very, very sensitive (as I am to many standard meds) - both physically and psychologically (prednisone makes me panicky).

However, after suffering through two days of 60mg of prednisone a day, and feeling very ill all over and unable to sleep at all b/c of the steroid, I returned to the ENT clinic, and was told that to avoid the serious systemic effects that oral prednisone was having on me, methyl prednisolone would be injected through my eardrum into my inner ear. The injection process was painless (the ear was numbed), but hours later I felt like my inner ear was ON FIRE!!! (I feared that more damage was actually being done to my inner ear! Returning to the ENT again, I was injected with an old steroid that I knew I was tolerant to - Kenalog - and had two more injections of it during the next week.

Sadly, my hearing didn't return, but tinnitus is now constant and plagues me all day and night. Weeks later, I noticed that I was beginning to hear a rattling sound in my left ear when I heard certain frequencies and volumes of sound that were normal sounds to my right ear. The rattling has continued to increase somewhat, but there is never any discernable speech or music in my left ear. The ENT has given up, saying that it is most likely serious viral damage from a cold I had last winter and blowing my nose too forcefully and up my eustachian tube, and there is nothing more he can do. I have had an MRI, but it shows nothing.

This crisis, along with my mold allergy and the constant fear of COVID19 fear is dreadfully overwhelming.

I keep taking all my nutritional supplements. But I'm taking much more xanax than I ever wanted to take, just to keep from "losing it". I keep hoping for some miracle.
 

Hip

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But I'm taking much more xanax than I ever wanted to take, just to keep from "losing it". I
Sorry to hear about your ordeal with hearing loss. It must be terrible. Have you any idea of what might have triggered it?

Acquiring a new infection can sometimes lead to sudden hearing loss (but if you are isolating due to coronavirus, it's unlikely you will have caught a viral infection at least). And autoimmunity is linked to sudden hearing loss.

Antioxidants like vitamin C, E and A can help in cases of sudden hearing loss, according to this study; but maybe whatever caused the hearing loss is already in the past, and so antioxidants might not be helpful.



If you are suffering from generalized anxiety disorder, this treatment might be of interest:

Completely eliminated my severe anxiety symptoms with three supplements!
 

Ailúron

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Thank you for the kind and helpful words!

The ENT (ear/nose/throat) doctor said this was likely a progressive virus blown up into my ear through my eustachian tube when I blew my nose during a bad cold (which is a virus too) late last year. I remember that this seemed to happen twice, as if my left inner ear were "blown up" (kind of like an airplane altitude effect) when blowing my nose. The question is why didn't it drain out as it would have when this happened in the past? He does not believe it could be COVID at all (as it started behind the eardrum and I have never had any other COVID symptoms, no fever, no dry cough, no trouble with lungs...knocking on wood). This is one thing I am very relieved to know.

I am definitely isolating, which is especially depressing because I am going through all this alone. I have to put a soft earplug in my bad ear in order to stop the rattling if I watch any TV. And music has become difficult to listen to - stereo is now an impossibility - and music would otherwise be so comforting at this time.

I have always taken ample amount of vitamin A, C, and E, as well as zinc (for extra immunity) and magnesium (for anxiety and leg aches), and a multiple vitamin-mineral.

Thanks for the link to a generalized anxiety solution. I will go there now.
 

ljimbo423

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I lost 100% of my hearing soon after I woke up in the morning - it was preceded by some strange clicking (almost a smacking sound) in the ear and tinnitus so intense it was painful.
I have hearing issues also. They vary from hour to hour and day to day. I don't think I've ever lost 100% of my hearing but it's often significantly less than it should be. I also get a lot of popping, clicking sounds and sometimes tinnitus too.

After having this for many years now, I'm pretty sure it's due to inflamed eustachian tubes. I can often clear my ears briefly by pinching my nose and blowing gently into my nose or doing just the opposite. Pinching my nose and trying to breathe in through my nose.

I think it's systemic inflammation that's causing my eustachian tubes to become inflamed, blocked and affecting my hearing.
 
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Ailúron

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This sounds very logical, Jim. I've always done very similar things during airline flights - I'm VERY sensitive to altitude change (even driving up or down mountains), and my ears have never adjusted as quickly as others with me. I'm sure my eustachian tubes were inflamed, likely infected during that cold (I say this because I had a very peculiar sore throat that the doctor said was only an inflamed streak down the left side of my throat - he'd never seen any one-sided sore throat like that before - it now seems clear that was infection draining out of my eustachian tube on the left. and then mold allergy season hitting only plugged it up, I guess. My one troubling issue is that because of the "thru the eardrum" injections, there is still a hole in my left eardrum that hasn't completely closed yet and air still can flow in and out. Despite the ENT's pessimistic prognosis that my hearing loss is permanent - I hope that when that hole heals back together, my inner ear and my hearing will improve. What concerns me is that I don't know if other problems may develop inside the sealed inner ear with that hole healed up. [Edited: 6/22/20]

@Hip - thanks for the very comprehensive list of anxiety treatment supplements. I remember DAG seemed to have a good effect on me. Going to pick some more up soon. Yes, shellfish allergies completely ruin the effectiveness of DAG. Magnesium glycinate seems to help a lot, too. (Most is Mg oxide or citrate - not the same effects at all. Mg oxide makes for a good, safe laxative, though.)
 
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Hip

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After having this for many years now, I'm pretty sure it's due to inflamed eustachian tubes. I can often clear my ears briefly by pinching my nose and blowing gently into my nose or doing just the opposite. Pinching my nose and trying to breathe in through my nose.
Have you ever tried sinus and nasal cavity irrigation with warm saline solution? This is also a technique practiced in yoga (called jala neti). I used to do regularly when healthy, and I always found it cleared out the blockages from the eustachian tubes, in that after doing the nasal irrigation, I could then faintly hear the air flow of breathing in my nose, because the eustachian tubes run from the ear to the back of the nasal cavity, so when unblocked they pick up the sounds of the air flow in the nose.

There are many videos on YouTube showing how to perform nasal irrigation / jala neti, but I use a more "advanced" technique of irrigation, detailed in this post:

Advanced More Effective Nasal Irrigation (Jala Neti) Technique
 

Ailúron

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@Hip @ljimbo423 Unfortunately, my sudden hearing loss occurred just a few days after using a neti pot for several weeks, with a specially prepared and measured solution using warmed distilled water with Xclear neti powder dissolved in it. It's composed of saline, sodium bicarb, and xylitol (a gentle anti-microbial sugar alcohol - not like alcohol at all but called that for some chemical reason - unlike normal sugar, it has no caloric value at all nor does it become sticky - it also occurs naturally in our bodies).

The Xclear solution certainly opened up my breathing passages soothingly, but any neti use seems to settle in some of my sinuses and hours later I can bend over and water will pour out of my nostril. This concerns me a bit - it's usually out of my right nostril and I feel a release of pressure above my right eye when that happens. Maybe because I have a deviated septum? The ENT doesn't think so, but I feel more and more doubtful about him, despite his "glowing" reputation.

Right off, he didn't modify his initial use of prednisone and then methylprednisolone, when I warned him that I reacted severely to both when they'd been administered to me for other reasons - poison ivy, etc. And sure enough, prednisone tablets made me very ill, and a methylprednisolone injection burned like fire inside my ear.

I will try your jala neti method, Hip, and see how it goes. Also, Hip and Jimbo, note that I edited my earlier post to make it more understandable.

PS: By the way, either I'm extra sensitive to chlorine or the water here is extra chlorinated, but using tap water in neti burns my nasal passages every time.
 

Hip

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Unfortunately, my sudden hearing loss occurred just a few days after using a neti pot for several weeks
I wonder if the nasal irrigation might have inadvertently pushed a bacterium present in your nose into your ears via the eustachian tubes? I am not aware of this happening though, so just speculation. Very occasionally people can get a serious infection from using unsterilized tap water for their nasal irrigation, but you used distilled water, so that should be fine.



PS: By the way, either I'm extra sensitive to chlorine or the water here is extra chlorinated, but using tap water in neti burns my nasal passages every time.
Have you checked whether your tap water supplier puts chloramine in the water, in addition to chlorine? For some people chloramine can be irritating to the mucous membranes — see this thread:

IBS much improved after removing CHLORAMINE from my tap drinking water (not the same as chlorine), which is not removed by carbon filters
 

Hopeful2021

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volumes of sound that were normal sounds to my right ear. The rattling has continued to increase somewhat, but there is never any discernable speech or music in my left ear.
Sadly, my hearing didn't return, but tinnitus is now constant and plagues me all day and night. Weeks later, I noticed that I was beginning to hear a rattling sound in my left ear when I heard certain frequencies and volumes of sound that were normal sounds to my right ear. The rattling has continued to increase somewhat, but there is never any discernable speech or music in my left ear. The ENT has given up, saying that it is most likely serious
I highly recommend this book called
The Brain's Way of Healing.
It will share success stories and the logic behind several ear / brain therapies. There's at least 3 you can then research. I have one of them for the ear/brain connect and I used it for about 2 months. Very impactful.

There's also other neuroplasticity devices that can help enliven all of the nerves. Perhaps back when you were neti potting prior, those nerves were too tired from all of that sensation and having access to some current will help them settle and work again. Great need from your doc that no apparent damage.
Once you read the book, I hope you'll be inspired to try a few of those different therapies. I wouldn't otherwise recommend it unless I could see how it's possible for you.
 

Ailúron

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Thanks, @Hopeful2021! I really appreciate your recommendation -- restoring at least some hope in me for a possible recovery from the loss of what was always good hearing. I know this might sound trivial to some, but I'm a music lover, and the present fact that I can't hear anything in stereo anymore is really depressing me.

BTW, "Hopeful" is a very appropriate nick for you! :thumbsup: I'll order that book right away!

PS: I don't quite understand this line you wrote. "Great need from your doc that no apparent damage." It seems this may be a very important comment that was accidentally not finished??
 
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Hopeful2021

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Thanks, @Hopeful2021! I really appreciate your recommendation -- restoring at least some hope in me for a possible recovery from the loss of what was always good hearing. I know this might sound trivial to some, but I'm a music lover, and the present fact that I can't hear anything in stereo anymore is really depressing me.

BTW, "Hopeful" is a very appropriate nick for you! :thumbsup: I'll order that book right away!

PS: I don't quite understand this line you wrote. "Great need from your doc that no apparent damage." It seems this may be a very important comment that was accidentally not finished??
Hello @Ailuron

great "news" that your doctor said there's no apparent damage.
I'm super excited for you to read the book. Theoretically you could start at Chapter 6 or skip the 3 on the Parkinson's fellow. Anyway.... now I'm on pins and needles to hear from you in the future.
Every chapter you will probably smile, clench your arms and hands in excitement, and like me, cry a few tears of happiness.

I know the chances of me living in an assisted care abd with a feeding tube were pushed aside hard after listening to the audiobook. My mom listened to most of it with me and was willing to take part. You'll know what I mean after you get to the very end. Luckily the several therapies I did as a result of being inspired by that book helped me enough.
I'm approximately 14 months from having "read" it. And today had the fastest walking day I've had in more than 2 Octobers. Ummm my math is weird.

Anyway, I hear your enthusiasm. And you GOT this.
I'll send you a "conversation" in this forum so maybe we can chat more there too.
 

Ailúron

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great "news" that your doctor said there's no apparent damage
Ah! What a great difference just a couple of letters can make! ;) Unfortunately, that's only what he said - I fully believe just to cover his a**. I had told him in advance an injection of methyl prednisolone in my butt (for a horrible reaction to falling into a bed of poison ivy) had actually hurt worse than the poison ivy did, that it had swollen up into a huge flaming hot lump on my rear, but he went ahead anyway, saying "Trust me with this! It won't affect you systemically." But sure enough, my inner ear felt like it was on fire for days. I no longer trust him at all and will not go back to him, "very highly recommended" or not. He obviously doesn't believe the serious sensitivities that someone with ME/CFS can have.

But on a much happier note, yes I am enthusiastic, excited about the reading that book that is already being shipped. Again, thank you so much, Hopeful!! I look forward to hearing about your successes with the therapies and keeping you updated on mine! I read the book Toxic: Heal Your Body, recommended when I first joined this site, and though the author, an MD, seemed very experienced and compassionate, everything he recommended only made me worse and worse. If I wasn't "toxic" before I started, I most certainly was by the time I finished that book! For me, it was a painful waste of $35 and around $100 for exotic supplements that only compounded my misery. I am NOT saying this book wouldn't be the perfect solution for somebody else, but it was unfortunately a very bad start for me here.
 

Hopeful2021

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Ah! What a great difference just a couple of letters can make!;)Unfortunately, that's only what he said - I fully believe just to cover his a**. I had told him in advance an injection of methyl prednisolone in my butt (for a horrible reaction to falling into a bed of poison ivy) had actually hurt worse than the poison ivy did, that it had swollen up into a huge flaming hot lump on my rear, but he went ahead anyway, saying "Trust me with this! It won't affect you systemically." But sure enough, my inner ear felt like it was on fire for days. I no longer trust him at all and will not go back to him, "very highly recommended" or not. He obviously doesn't believe the serious sensitivities that someone with ME/CFS can have.

But on a much happier note, yes I am enthusiastic, excited about the reading that book that is already being shipped. Again, thank you so much, Hopeful!! I look forward to hearing about your successes with the therapies and keeping you updated on mine! I read the book Toxic: Heal Your Body, recommended when I first joined this site, and though the author, an MD, seemed very experienced and compassionate, everything he recommended only made me worse and worse. If I wasn't "toxic" before I started, I most certainly was by the time I finished that book! For me, it was a painful waste of $35 and around $100 for exotic supplements that only compounded my misery. I am NOT saying this book wouldn't be the perfect solution for somebody else, but it was unfortunately a very bad start for me here.
Wow.... that's scary.
yeah... toxic this and that is so undefined. I don't know of that book, but I'll stay away.

a shot in the arm for flu vaccine is how I ended up here. My mom was visiting and since she's older and believes, I thought why not? Well that was an epic bad thought for mom and daughter. I'd give almost anything for that not to have happened. I'm not per se anti-vax either. But I don't ply my dogs with them nor my kitties anymore.... except for Lyme. Ticks are the worst. Aliens of creepy alien creepy movies but right next to you. LOL.

I think the vaccine was like $28 .... didn't know it would change the course of my life. Sniff sniff. Oh well. At least I'm still alive. So I'm thankful for that.

when does the book arrive? Are you a fast reader? My eyes didn't allow me to read for many years. I glance mainly at my smartphone screen but recently can "read " once in awhile. Training the vestibular patterns ... a topic in the book, recently has really helped me actually read better.
 
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In my experience, hearing loss seems to coincide with intestinal or gut infections. I think probably caused by endotoxin or something; the next time it happens, I will try to take charcoal or cyproheptadine, riboflavin, and vitamin C.

I have had episodes of SSNHL over the years since developing CFS. I bet it's due to viruses but for me they classify it as autoimmune.

I haven't gotten audiology testing done, but my right ear seems to have far worse ability to hear, especially at lower frequencies. So those episodes of SSNHL have really taken a toll.
 

Ailúron

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Thanks, @Don Quixote. My ENT thinks my SSNHL is due to a cold virus blown up my eustachian tube which happened last December, and the loss is permanent. (He is depressingly grim and not very encouraging.)

I would go back for more testing and maybe imaging or go to another ENT for a second opinion. However, my 71-yo neighbor just tested positive for COVID19 and the ONLY place he goes is to the same ENT I go to (for his allergy shots) - a doctor who has not been as careful about PPE and screening as I would expect. So I'm not only afraid to go see him again, but also afraid to see someone else - and another good ENT seeing new patients in this area is very hard to find anyway - it seems those who are less cautious about PPE are the ones who are the most willing to see new patients.

If you have had episodes over the years, it seems that you have recovered some hearing between episodes? If so, this gives me great hope. I have recovered some hearing in the affected ear, but it is only very high and very low frequencies - I hear sounds like squeaking or snapping my fingers next to the affected ear, or the rumble of trucks passing the house and deep bass sounds, but the middle frequencies of speech and most music are only rattling or crackling sounds. The tinnitus is 24/7, but fortunately it is just a constant hissing now and rarely the piercing "screaming" sound it was for so many weeks. It definitely gets worse if I let my blood pressure get high.

My intestinal condition seems to be okay, but I do take extra riboflavin and vitamin C - along with all the other B's, A, D, E, and zinc (which is said to be necessary for healing wounds and for strong immunity), as well as omega-3, cod liver oil, etc. Guess I'm "throwing the whole shelf" of supplements at this, hoping to regain some more normal hearing now.

Thanks again for your input, DQ. I'm so sorry to hear that your right ear has not fared well through your episodes of SSNHL.
 
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Thanks, @Don Quixote. My ENT thinks my SSNHL is due to a cold virus blown up my eustachian tube which happened last December, and the loss is permanent. (He is depressingly grim and not very encouraging.)

I would go back for more testing and maybe imaging or go to another ENT for a second opinion. However, my 71-yo neighbor just tested positive for COVID19 and the ONLY place he goes is to the same ENT I go to (for his allergy shots) - a doctor who has not been as careful about PPE and screening as I would expect. So I'm not only afraid to go see him again, but also afraid to see someone else - and another good ENT seeing new patients in this area is very hard to find anyway - it seems those who are less cautious about PPE are the ones who are the most willing to see new patients.

If you have had episodes over the years, it seems that you have recovered some hearing between episodes? If so, this gives me great hope. I have recovered some hearing in the affected ear, but it is only very high and very low frequencies - I hear sounds like squeaking or snapping my fingers next to the affected ear, or the rumble of trucks passing the house and deep bass sounds, but the middle frequencies of speech and most music are only rattling or crackling sounds. The tinnitus is 24/7, but fortunately it is just a constant hissing now and rarely the piercing "screaming" sound it was for so many weeks. It definitely gets worse if I let my blood pressure get high.

My intestinal condition seems to be okay, but I do take extra riboflavin and vitamin C - along with all the other B's, A, D, E, and zinc (which is said to be necessary for healing wounds and for strong immunity), as well as omega-3, cod liver oil, etc. Guess I'm "throwing the whole shelf" of supplements at this, hoping to regain some more normal hearing now.

Thanks again for your input, DQ. I'm so sorry to hear that your right ear has not fared well through your episodes of SSNHL.
No problem. In my case, I have managed to recover some of my hearing over time but not without setbacks. I can't say for sure what this is. There are other causes of hearing loss (aneurysms, tumors, etc.) and I haven't investigated far enough.

Have you gotten iron panels done? I think in many cases high iron can cause thicker blood as well as infections and both of these things can harm hearing. In my case, my iron has been messed up; I have super high iron in my blood but low ferritin. I am beginning to think it has a lot to do with my issues.