Seeking Input on Possible Middle Ear Injury on Top of Noxacusis

Discussion in 'Support' started by Marin, Mar 21, 2021.

    1. Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      First I’ll start by saying that I find so many people here to be so intelligent and much more knowledgeable than any of the specialists I’ve seen. Because of that, I’d really appreciate any guesses on what could have happened to my ear.

      I had moderate noise induced noxacusis that was made catastrophic back in late September by LLLT. Biggest regret of my life. Ever since then my ears have felt so much more inflamed and things like burping or yawning can cause pain in my eardrums that I never had before. They just feel burnt. On top of that every sound hurts and I get horrendous delayed burning pain in my ears. Despite all this new pain the neurotologist that I saw afterwards said my ears and eardrums looked fine.

      After reading much about NUCCA and how neck alignment can effect the ears, I tried going to a NUCCA chiropractor back in November to see if it could help me improve at all. The NUCCA was the highest rated in my (large) city, and it turns out my upper vertebrate are severely misaligned so it seemed like at reasonable thing to do.

      During my third (and last) adjustment, the chiropractor applied pressure to the back of my ear while pressing on my neck. My ear (already extra fragile from LLLT) immediately felt pain, I felt vibration in my middle ear, and there was a loud “warbling” tinnitus. I stopped him immediately, but it seems the damage was already done.

      Ever since then, talking with an earplug in that ear cause so much more pain. Same for earmuffs. Even walking with earplugs or muffs causes additional pain in that ear now so I literally have to tread very lightly around my house. I’m guessing it’s because of the occlusion effect putting extra pressure on what was hurt in my middle ear?

      What really has me in a bind is that I can’t be in a quiet room let alone around my children without earplugs because the noxacusis is so bad, and this is greatly affecting my already extremely low quality of life. I have to spend so much time in isolation, and when I am around my family I can hardly interact with them because of this additional ear pain I feel when I speak even softly.

      I haven’t mentioned this additional ear issue to my doctors yet because I’d been hoping it would either resolve on its own or I could address if/when the noxacusis improves. However, it’s been over 4 months now and neither condition is any better. I am absolutely miserable, in so much pain everyday, and trying my best to hang on. If I could just have my ears removed at this point I’d happy do it, but sadly, that doesn’t seem to be an option.

      Does anyone have a wild guess on what could have happened to my ear when the chiro pressed on it, or have recommendations on diagnostic testing? Maybe it’s a fistula that needs to be fixed surgically? Obviously an MRI is out of the question. I simply don’t trust my doctors anymore, and I fear worsening the noxacusis with unnecessary or harmful testing. I’d really like to be armed with input from this forum before even bringing it up with my doctors.

      Anyone willing to take a guess or make a suggestion on what testing to ask for from my doctors? @FGG, @Greg Sacramento, @Zugzug, @Aaron91, @100Hz?

      Thank You!
       
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    2. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      I will start off by saying I don't know much about using lasers in the ear. I used to use them for muscle/joint pain and even surgical recovery for my (animal) patients. They reportedly increase ATP so I wonder if that led to increased type 2 fiber stimulation in your case (and secondary TTTS type spasms). I have TTTS type pain and yawning does hurt but mildly. I can't remember the last time i burped, which I only just thought of after reading your post.

      Did someone report noxacusis success with LLLT? I would be curious if so what their pain was like.

      @Greg Sacramento knows much more than I do about human head and jaw alignment. Could you tolerate a CT scan? It definitely sounds like something was potentially moved in the wrong direction. This could be correctable with something as simple as good physiotherapist.

      It's also possible you have fistula and the adjustment made it worse if it affected intracranial pressure, for instance. An MRI or a CT will almost never tell you if you have a PLF however and if you suspect that maybe get a telehealth consult with a specialist in that area. I hesitate to just tell you to try the conservative method because I don't know if elevating your neck will affect your alignment. See if you can, at minimum, get your x-rays from the chiro to send to a specialist.

      As far as noxacusis, resting your ears from excessively loud noise will be very important. Are your kids old enough to explain any of this?

      If I remember correctly, you also don't tolerant any supplement. I wonder if something like MCAS (mast cell activation syndrome) or similar allergy/intolerance is adding to your inflammation. Perhaps, try a special diet for that to see if you get any improvement.

      ((Hug)). I'm so sorry for your struggles and I hope you turn a corner soon.
       
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    3. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Marin Treatment by chiropractor probably resulted in brief vertebral and basilar artery trauma. These two arteries carry blood to the inner ear labyrinth, the vestibula-cochlear nerve, and the brainstem. When blood flow through these vessels is restricted for any reason, it is called vertebrobasilar insufficiency.

      First X-Rays are needed to view C spine. There are ways to gently take pressure C spine off the vertebral artery. This is done by relaxing muscles that can pressure the C spine. Glycinate Magnesium 100mg 4 times a day. Sleep on side, not on stomach. Use correct posture.
       
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    4. AUTHOR
      AUTHOR
      Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      @FGG, thank you so much for taking the time to provide with such detailed response. I highly value your opinion.

      I agree, I do wonder if the LLLT increased my type 2 fiber innervation. I also have a problem with things like CoQ10 so that makes sense. At the time I tried the treatment I had read about it helping several people with pain including burning pain so I took a chance on it. I have tended to be very unlucky throughout this whole journey.

      I do have regular telehealth appointments with two different neurotologists, and I think I will bring this up on my next call. Good to know that an MRI or CT wouldn’t be much help in identifying a fistula, but I might be able to tolerate a CT scan if needed to check for other alignment issues. I also actually have been sleeping on a wedged pillow for months because of the ear pain, and that has helped a bit. No idea what it’s done to my neck, though!

      Thankfully, my kids are very respectful of my ears, and my whole family tiptoes around me. It’s just that the hyperacusis is still so bad that I still have to wear earplugs even when they are so quiet. My kids also spend lots of weekends with grandparents to both give me absolute quiet and them a chance to have some fun. Quite a sad state when my house used to be filled with laughter and music all day.

      You are correct about my issues with supplements, and I really appreciate the suggestion about possible MCAS or other intolerances. I have wondered the same thing, and I actually just started working with a functional medicine doctor/nutritionist who has me on a strict AIP diet to work on my overall inflammation, gut health, and other health issues that could be interfering with my recovery. You suggesting this very thing helps me feel better about all of the money I’m spending on this approach :LOL: It’s a shame that this type of medicine isn’t covered by insurance, at least not by mine.

      I have read so many of your posts, and I know that you also struggle greatly with the horribly unfair hand that you’ve been dealt. I sincerely hope that there is relief for all of us sooner than later. I never knew ears could cause so much suffering until it happened to me.
       
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    5. AUTHOR
      AUTHOR
      Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      Thank you so much for the information! I’ll look into your suggestions. I’m very sensitive to Magnesium, but just this week I started taking what I can tolerate (50 mg 3 times a day) and I’ll try to work up from there. I don’t want to jinx myself, but just that small amount might be helping a very tiny bit with my ear pain. If I can work up to tolerating more I’m sure it could only help.
       
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    6. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Are you sure you are sensitive to Magnesium or fillers in the tablets? If you generally have issues with tablets/capsules it's possibly not the Magnesium and it might be another reason to try liquid and titrate up slowly (it works better imo anyway).
       
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    7. Orions Pain
      Sad

      Orions Pain Member Benefactor Hall of Fame

      Tinnitus Since:
      11/2019
      Cause of Tinnitus:
      A series of unfortunate events
      @FGG, do you have brands of liquid Magnesium you’d recommend? There are so many out there and many I’ve found are full of sugar additives.
       
    8. AUTHOR
      AUTHOR
      Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      Good point; I’m not sure. I can sometimes feel faint the next day after taking it, and my heart can beat harder soon after taking it so I assumed it was messing with my blood pressure. I’ve been trying to get more sodium in my diet to counteract that, and so far it seems to be helping. I’ve cut out all processed food and grains so I’ve had to actively add salt back into my diet now.

      I’ll definitely look into the liquid Magnesium if it continues to be a problem or if I don’t quickly feel benefit from the one I’m taking. Thanks!
       
    9. 100Hz
      In pain

      100Hz Member Benefactor

      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Noise exposure
      @Marin, I've come to the conclusion that stimulating the area is dangerous when it is highly sensitized (I think in terms of trigeminal nerve area rather than middle ear although anything that could stimulate a possibly damaged tensor tympani could apply as well). A couple of years ago I was desperate (after second acoustic shock) to try anything, so I tried an acupuncture pen on the trigeminal meridian. The electrical pulses actually kind of felt very similar to the ominous pin prick feeling especially when I was doing it around the back my neck, head, and ear and I wasn't sure if that was good or bad but stupidly persevered with it for a while but I'm sure now it made it so much worse. I never tried LLLT although I was curious for a while but I wouldn't now anyway as I'm suspicious it could cause similar unwanted stimulation.

      I saw a chiropractor. Once was at a time when I wasn't doing too bad and the neck adjustments didn't make any difference to my noxacusis (certainly didn't make it worse), and the last time when I was really suffering after a massive setback that was lasting for months and I remember thinking it made it worse but I'm not sure. Even if it didn't make it worse it definitely didn't help.

      I don't even let doctors touch my ears anymore, they've only ever been made worse with inspections and cleanings (even manual cleanings). And they've only ever prescribed me bags of drugs that have caused even more problems, or drugs that I wouldn't risk taking long term anyway. The only reason I go to see doctors now is to get paperwork and diagnosis for as many interpretations of hearing loss / tinnitus / hyperacusis as I can get plus referrals that may be useful in the future. I think the battery of tests is also a necessary evil to get done at least once, again so that this paperwork is on hand for the future hopefully in order to qualify for a potential treatment and if not that then at least to maybe qualify for disability once these conditions finally get more widely recognized as disabilities.

      Sorry you are suffering, but this may help - it looks like you are around 4 or 5 months in, is that correct? My recoveries both took around 16 months in total, and the first noticeable improvement (both times) came after around 9 - 10 months. So if your situation is anything like mine it may give you and idea of a timeline to keep in mind.

      @FGG that Ambroxol 20% sounds interesting, do you know any more about that stuff?
       
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    10. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      The Trace Minerals one seems to work the best but apparently has a small amount of arsenic in it (lower than the national limit but higher than the California limit) so I only use it a few times a week and in between I use the NOW Liquid Magnesium. You could probably just use the NOW and see how you do.

      It tastes *terrible*. So bad it may even trigger nausea. One reason they might add sugar sometimes. Easiest way to mask taste: put it in a "shot" of grapefruit seltzer water and then chase with more drink or a piece of lime. It doesn't bother me much when I do it like that.
       
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    11. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      @100Hz, Ambroxal has a lot of potential as a topical for nerve pain (blocks Nav1.8 channels). You can't officially buy the topical anywhere but in countries where the drug is available, you could get it compounded into a topical.

      It's an old drug, I'm sure once trials are done, the topical will be picked up, patented and cost a fortune.

      It's currently available OTC as a tablet or capsule in many countries (you can even find it on eBay). It reportedly helps fibromyalgia pain even orally.

      Fair warning, it's not been tested long term as far as I know and in fact is usually used to treat sore throat from a cold/flu.
       
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    12. Born To Slay
      Depressed

      Born To Slay Member

      Tinnitus Since:
      10/2019
      Cause of Tinnitus:
      Loud concert
      Ambroxol for the treatment of fibromyalgia: science or fiction?

      Definitely looks interesting, maybe this will be the silver bullet.
       
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    13. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      I'm so sorry @Marin. Unfortunately, this is outside of my area of knowledge since I've mostly studied bilateral forms.

      I'll just add that I take 400 mg of this brand of Magnesium Glycinate before bed. It helps me with relaxation and sleep.

      However, @FGG and @Greg Sacramento would understand this issue better, both from experience and knowledge.
       
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    14. AUTHOR
      AUTHOR
      Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      Thanks so much for input. My experience has also been that doctors haven’t been any help.

      I’m just so mad about what happened to my ear at that chiropractor visit and my now extra difficulty and pain with earplugs. Before that, I was still homebound but at least I was getting by with earplugs and could spend more time with my kids in the evening.

      This whole mess actually started last June when I lost hearing while using headphones for work, but my severe worsening with LLLT was late September so that was about 5.5 months ago.

      Thank you for the hope! I have seen some people start to improve after many months and I sure hope that I can be one of them.
       
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    15. AUTHOR
      AUTHOR
      Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
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