Challenging the Current Terminology of Hyperacusis

Yeah, I've tried the diet stuff multiple times and it hasn't helped, unfortunately. I do think eating less salt helps some, but not that much.

I am sorry that your problems can't be helped. I think it's pretty unfair that you don't get more help on here. It's hard because you know the most so anything anyone else could offer is probably strictly less than what you've already thought of.

I'm also sorry if it ever seems insensitive that I want hearing loss in exchange for hyperacusis. If this were the case, I know exactly what would happen. I would be happy for a few days and then the reality would hit that my life would never be the same and that I was still severely disabled.

With all of this being said, if you think your issue is middle ear related, have you ever tried ice packs like these? They also can be heated. I know you said your vertigo was triggered by changes in temperature. I'm not sure if that's still an issue or not.

 

Thanks so much for thinking of me and my case. Here is my whole history, btw, since I'm not sure I ever put it in one place.

My problems started as vertigo problems and were really severe. My longest attack was 48 hours of full 10/10 rotational vertigo. I couldn't even open my eyes or move my lips without vomiting. The attacks were not just long lasting, they were always extremely severe. One ER doctor said it was the most violent looking nystagmus he had ever seen in his whole career, in fact.

Anyway, after repeated attacks, I lost most use of my right vestibular nerve (86% if i remember correctly) but after extensive physical therapy, my balance is mostly normal.

My hearing was totally normal at this point and, in fact, music was the way I dealt with my PTSD from the sheer constant fear of the unpredictable attacks.

At first, they assumed the attacks were caused by Meniere's because of the nature of the attacks but I didn't at all respond to diet or diuretics and I reminded them that during the beginning of this, I had a fever and subsequently miscarried (was late first trimester when this happened). They started looking at infectious causes as I also had a history of Lyme a decade or so earlier. I came back with Babesia antibodies (something veterinarians are sometimes exposed to) so they put me on high dose Azithromycin for a month. That's when I lost my hearing, gained tinnitus and started with severe distortions.

It took them forever to acknowledge the ototoxicity. They still wanted to blame Meniere's, in fact (despite the fact that my vestibular problems were unilateral and my hearing issues are symmetrical and bilateral).

At this point, I still had vertigo attacks, my hearing issues were horrid and my (now ex) husband began to tell me (and everyone else) that I probably "just went crazy from the miscarriage" since his mom was a nurse and has "seen that happen all the time" apparently. I had visual snow, too, at this point and actually did see a psych at his absolute insistence who thankfully told me I was mentally sound in her opinion but had severe depression, PTSD and a neglectful, dismissive husband who wasn't helping things. In other words, it was circumstantial and not "all in my head."

I got a second opinion from a nurse practitioner who thought the vertigo attacks seemed infectious because of the fever at onset and put me on antivirals, instead because I had 20x normal Epstein-Barr titers. I have not had a single vertigo episodes since and it's been at least 18 months. The theory is pregnancy reactivated the latent virus in my case.

So vertigo is no longer an issue at all. The hearing stuff is life destroying, though. As bad as it was, I would trade getting vertigo attacks again just to be able to hear music. It was a deep, deep part of me and life just feels empty without it. It probably seems relatively superficial to those who don't have the same relationship with it but that's honestly how I feel.

As far as my tinnitus, it went up and down a lot in the beginning but has been a constant 6/10 for quite awhile. I can mask easily with fans in every room and sort of got used to doing that. In that sense, my tinnitus was more annoying than life altering as long as I had reasonable access to masking most of the time. I still hate it but it's kind of moved to "least of my problems" at this point.

The pain stuff is new and that's what I think is primarily middle ear and related to noise trauma. I had been taking Aldosterone to try to get my Na/K strial pumps more efficient as this is another thing Azithromycin damages. It was honestly making a 10-15% difference in my low end hearing. For background, I have trouble hearing anything under 100 Hz, even if it's very loud and I could hear thunder better for sure after a few months on Aldosterone. Anyway, I wanted to see if I could hear a bass line in a song so I put my phone on max right next to my left ear canal (pressed up against even) and I felt a static irritation and then bilateral pain.

This is another reason I think it's middle ear, as both ears are effected but I only heard loud sound in my left.

Anyway, I will look into the cold wrap. God knows, almost anything is worth trying at this point.

 

@FGG, I will work on a hypotheses per our conversations above stating with your comments in post #2 and my response post #56 - facial nerve.

This may be a key. I remember you mentioning this before with vertigo and with other mentions - and said to self cranial nerve interactions. I had wondered if a previous situation such as bending head over a dog when in vet practice - dog barks loud and you pull your lower jaw forward. Outcome would not have anything to do with TMJ.

Glad to see that you use Magnesium. I would use Glycinate Magnesium four times a day, once being before you go to sleep for a total of 400mg-600mg within 24 hours. You could even make it into liquid form and sip it 6 times a day. Cranial nerves, nerves and muscles keep asking for more mag.

 

Wow, that's rough. At one point, I had looked into Meniere's (before it was obviously ruled out) and people kept saying how scary it was. Although you don't have Meniere's, it sounds horrific. My mom has had vertigo spells, but not like that. I can see how it could cause PTSD. The miscarriage sounds difficult and personal, with vertigo as the cherry on top.

I still am not totally clear on what Meniere's is defined as. I've seen some definitions along the lines of "totally unexplained" unilateral vertigo spells, tinnitus, and hearing loss that is often helped by low salt diets and diuretics. I've seen others stretch the definition to mean "some cause, but not 100% confirmed." It actually reminds me of a parallel to fibromyalgia in that some define it as "unexplained pain and fatigue" while others with clearcut autoimmune disorders are defined to have it. I'm confused because I thought fibromyalgia was defined as a nervous system disorder, whereas autoimmune disorders are inflammatory disorders. I've also seen some theories that Meniere's can be autoimmune, but this confuses me since it's unilateral.

On this topic, I've heard of the "John from Ohio" protocol, which is basically an antiviral protocol. I vaguely recall this including Acyclovir and maybe lysine and other things. You've probably tried this kind of thing.

I agree with you that, oddly, the vertigo and hearing issues could be unrelated because the vertigo was unilateral, but the hearing issues were bilateral. Maybe this doesn't make any sense, but is there any possibility that the Azithromycin caused a herx reaction? In all likelihood, your antibodies were IGG's hanging around? I have been tested for lyme bands and have a few IGGs, but I don't have Lyme. Do you think you actually had active Babesia?

For what it's worth, I do think you stand a chance of the pain fading with time. I also think, as all of us have discussed many times, that FX-322 will eventually reach lower frequencies. Unfortunately, I don't think it will be this time around. I do think the timeline is sooner than we think though, so hopefully you can get music back.

 

Hang in there, I had serious pain as you described for months after my first real hyperacusis setback in 2019 from a kid screaming on an airplane. That setback aggravated the side of my face, back of head (directly behind cochlea), jaw, down my neck, and even into right arm to my my fingertips.

Oddly, I found that CBD Lotion from Lazarus Naturals rubbed on my jaw, back of head, and around ear helped to numb some of the pain temporarily.

 

My vertigo is no longer an issue and I do take low dose Acyclovir chronically to make sure my EBV doesn't become an issue again. I consider this symptom entire separate from my hearing issues and pretty much resolved with anti virals.

Incidentally, a lot of "Meniere's" is actually viral and one doctor, Dr. Gacek has had success with antivirals and Meniere's symptoms.

Meniere's is basically synonymous with endolymphic hydrops but there seems to be some cases that run in families and some cases that seem secondary to trauma ("secondary endolymphatic hydrops", which can be classified differently and tends not to be so cyclic like Meniere's). It seems almost a symptom description (like Fibromyalgia in that sense) than a specific etiology.

It's not a herx. Lyme wasn't my issue. Lyme related hearing issues are unilateral and sudden or bilateral and progressive. Azithromycin itself in high and prolonged doses causes the kind of SNHL that I have. I don't believe I had active Babesia either. I think EBV was the sole cause if my vertigo and it responded well to 4x daily Acyclovir (I still take it once a day).

Thanks for the encouraging words though. I feel like my life is mostly shot at this point and i just want to try to make it long enough to hear music again before I die. Even if it's many years from now. I really hope I can.

 

These are by far the best images I have seen of the facial nerve in relation to the ear, thanks for sharing. I hadn't realized the nerves are so close to the ear drum. My facial "pain" appeared around the same time I started getting the thumps and flutters in my ears.

Tonic Tensor Tympani syndrome isn't unheard of in trigeminal neuralgia patients but what I'm wondering is, can it work in reverse (so say that the tensor tympani and stapes are hyper-mobile) and somehow irritate the nerve. It looks like it both "innervates" the muscle and loops around inside our ears?

Anyone have any good theories?

@FGG, @Diesel: is the pain you're referencing like acid burning/feeling of constant cold air on your skin? On the face, skin behind ears, scalp and almost down the neck? I notice my hearing is much more sensitive when the pain is flared.

 

I'm curious if you've ever tried oral CBD for pain hyperacusis and if it does anything.

 

I've done the high-potency tinctures. Seems to calm a little, which took my mind off the pain. Maybe makes it a little more dull. Sometimes it seems to elevate the tinnitus a little, but it's temporary.

 

Burning. On the face, skin behind the ear, in the ear canal. Down the neck. Behind the jaw. I don't know what it's called, but I have noticed this muscle or nerve directly behind the back of the jaw gets hard when the setbacks are bad. Also, I assume my eustachian tube closes up because my ear feels like it's full and can't pop. I assume all of this irritation/inflammation is related.

 

I know you weren’t asking me, lol, but I used oral CBD of the same exact brand as Diesel referenced above and it didn’t do anything for my pain.

 

It definitely can work in reverse. TTTS can definitely irritate the trigeminal nerve from what I have been reading. In my case. I'm convinced my facial pain is entirely secondary to my middle ear spasms.

Mine doesn't feel like cold air much. Actually it did at first but I notice I haven't had that since I started taking Prednisone. Definitely an acid, almost prickly sunburn sensation and a lot of soreness. I also feel that things sound louder when the pain is worse.

It also spread initially to the scalp and down the front of the neck. I still feel it on my pinna and behind my ears a lot. Prednisone made it spread less for me.

 

How long did this take to go away for you? Was your pain bi-lateral?

 

I figured as much. It may help some of the anxiety, but probably doesn't touch the pain. I wonder about medical marijuana, granted that would probably make the tinnitus worse.

 

Thank you for sharing! I also feel an increase in "loudness" when it's flared up, kinda comes in waves (of course there's a baseline of pain) but it tends to go up. I'm sorry you're also dealing with this and hope it goes away for you.

 

@FGG This is one of the guides that I sometimes use and also for what isn't trigeminal neuralgia. Note #22. I often incorporate this with other guides including facial nerve guides.

Trigeminal neuralgia (slideshare.net)

Also:
Tonic tensor tympani syndrome in tinnitus and hyperacusis patients: A multi-clinic prevalence study

 

Oh I definitely don't think I have trigeminal neuralgia in the classic sense but I think I may have some trigeminal (and facial nerve) irritation secondary to a series of (interrelated) muscle spasms.

 

Only on the right side where I have 90% of my tinnitus.

 

So I did try some medical marijuana edibles to see what would happen. In the past, I had done my share of pot smoking and edible eating pre-tinnitus. My ears would ring back in those days, but I was a chill high type of guy.

Hyperacusis went off the freaking charts until the THC finally exited my system. It was like my brain had turned up all the equalizer on all the funky damaged frequencies. First time I had ever been 'pot paranoid.'

 

That's interesting. I haven't tried Marijuana for this issue, but I noticed that the full spectrum CBD (with THC) makes my hyperacusis worse, while the broad spectrum or isolate does not. I know what you mean about an equalizer feeling. I think THC just makes the sensory stuff more exaggerated. It probably is bad for visual snow as well.

 

Any thoughts on using an alpha blocker for the band of smooth muscle around the tympanic membrane?

Any pharmacologic or other treatment thoughts you have about this?

Any long term prognosis guesses as well (for at least the recent pain, I know my cochlear damage from ototoxicity isn't going to heal itself)?

 

Interventional Radiologist friend that you a slight irritated facial nerve - entire nerve. The trigger is ear and then the mandible builds up pressure and releases to areas in quote below. Will also release into neck. Will discuss more tomorrow or the next day with him.

 

@FGG, muscle ear swelling will go away. Stay away from loud noise. Don't drop a dish - noise that bother those with hyperacusis. He said stapedius muscle.

Facial Nerve : Anatomy, Physiology, Function and Clinical Importance

Not caused from a virus. So not this:

Inner ear and facial nerve complications of acute otitis media with focus on bacteriology and virology

 

Thank you so much for your input. Relaxing a 1mm contacted muscle is challenging but I am going to continue to avoid loud noise and maybe even up my liquid magnesium and report back.

I guess if it doesn't improve in a month or two, I can also see a dentist to see if my jaw has somehow become a co-factor that I'm not aware of also.

I do find the Pred helpful but obviously I can't take that chronically.

 

@FGG I also get facial pain, lots in cheekbones, under chin and around eyes. A portion of my facial nerve responds to my mandible by upsetting vertebrates hinged to open the mouth, the jawbone, jowl, and lower jaw. The facial nerve is like a rubber band. When I do something to upset these vertebrates (muscles) it can be weeks before things settle down.

For partial temporary relief, I hold warm water for five seconds on one side of mouth, then the other and repeat up to 20 times. After that, I go lay down. This stops my mandible from building pressure to release into facial thru facial nerve.

 

@FGG Radiologist emailed me and asked if you had taken Azithromycin? I wrote back yes - waiting to hear how this ties into our discussions. He also asked if you have an over-bite.

 

I don't have an overbite. I did as a kid but had it corrected with orthodontic work. Interesting that he asked about Azithromycin...

I have to admit, @Greg Sacramento , I'm very nervous of your friend bringing up Azithromycin unprompted. It was 2 years ago since I have taken it and it has already destroyed my life. The thought of it also causing middle ear degeneration is *terrifying* to me. I hope he gets back to you soon.

 

@FGG, you seem to have wanted input and you welcomed input from me, beginning with post #56 - page two. My friend asked to confirm the medication. Maybe to secondarily associate the jaw as the medication is known to possibly cause jaw pain and more so with an overbite. Is it possible with no jaw pain for secondary issues of discussion? Debatable. Many meds cause problems and this is common in remarks by most of us.

Also I didn't mention your name and he doesn't like medical subject message boards for many reasons. One reason being anxiety factors. Another being that tinnitus is caused often by mistakes. Being caused by ourselves is a human factor - it happens - even to ENTs and other doctors.

I mention understandable anxiety, if anxiety is mentioned by others. It can be difficult trying to assist some. I may stop altogether. I only discuss concerns from others when there may be a treatment to be considered to help a possible condition.

You're very knowledgeable and none of us knows everything. A million things can cause other problems, including any treatment. Arterial plaque can cause hypertension and hypertension can cause arterial plague or movement. Over use of CT scans can cause many problems.

It can be all scary. I'm scared myself with my severe conditions.

 

I really do appreciate your input. Sorry to dump my anxiety on you. I know you have your own very pressing health issues, too (I hope they are improving at least) and that's the last thing you need.

I had no jaw/face/ear pain after the Azithromycin insult and hearing loss for 2 years, so I just panicked a bit thinking he was saying that it was related to my new pain problem (the assumption, therefore, is that the drug initiated degenerative changes separate from the permanent damage already done).

If it's not too much trouble, does your friend or you have any recommendations for me or have a gut feeling about prognosis?

 

Yes - you have done some deep research as I notice association of this to much of your other thoughts.

The mentions with your lips may be the biggest key - meaning nerve ending traumas - facial nerve. Not Autoimmune. Sjogren's or chronic inflammatory. This isn't a lasting condition. For you, mandible pressure with pulling of the Stapes. More rest, still time - relaxed time should help. Maybe with your hearing and tinnitus as well.