Extreme TINNITUS and BRUTAL pain

@Maria87 - I don’t believe your nerve injury is permanent. We’ve had many members & some who are professional singers who’ve lost their voices. They’ve had terrible pain when speaking, too. Most had their singing voices return after their styloids were removed. The vagus nerve is what affects your voice most but it also has some nerve endings in the inner ears so I feel pretty confident that if you can get your styloids removed & get the pressure off your vagus nerve that it will recover or mostly recover over time. It is true that the longer the irritation goes on, the greater the chance of some permanent damage, but that’s not always true. I saw a video of a man who’d been deaf in one ear for 20 years & was diagnosed with ES. When he had a styloidectomy on the same side as his deaf ear, his hearing returned while he was in the recovery room. I think that shows how hard our bodies fight to survive. Even though you’re in a very difficult time now, there is hope for recovery. Keep fighting to find a doctor who will help you.

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Thank you SO much for saying that. Im in a very bad place now, i really need a surgery done now. I just wish i could get it.

Im so very very bad now, i just wrote this in another Eagle’s group;

This pain, ears, head, neck, throat, around eye and nose… This extrem tinnitus that keep getting worse.

Im in a very bad place now :sob:

I need my tinnitus to go down a lot, to survive this. And also the pain and the hyperacusis / Noxacusis to revolve. (Burning ear pain and soundsensitivity)

If its the eagles and jaw causing this, I dont believe a surgery will resolve it or ease it though, due to severely damaged nerves for 3 years, with worsenings followed by more worsenings. Ever since the pain spread to my neck and head and and eye my ears and tinnitus has been much worse… 2 monhts now…

Ive tried everything else… everything under the sun and amive also been chansing doctors and answears for 3 years. Just recently found out i have pretty thick styolids and calcifiations, with bad TMJD on top of that.

Im suffering to so much…

I also dont believe i will get a surgery…

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Maria do you have anyone who can advocate for you? I can only imagine how difficult navigating this must be under your circumstances.

Can you present to what we call an emergency room, (with all I can think of) to ask for is steroids, besides most importantly their medical review and care.

Also, I tried to look up lidocaine patches to see if they were ototoxic as well as their availability in Sweden and didn’t find what I was looking for. If you can use them, they are very helpful for nerve pain.

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@Maria87 - I also agree with what @Leah mentioned - try to find a cranio sacral therapist. Getting a little gentle therapy could cause a small shift in your styloids that could give you some relief. DO NOT go see a chiropractor. Rapid velocity neck adjustments are dangerous for people w/ ES.

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Something is really going on. I just got a tiny relief, my tinnitus went down 10 %, then i walked up to get food and i also cracked my neck backward ans tinnitus got so much worse, im litteraally dying hete, my head is screaaming! Ever since the pain from the ears spread to my neck and back of head on right side, and around my eyes and nose my ears got sp much worse. It was about 2 moths ago.

This is the worstvits ever been, im in shock, uäitbalso hurts to swollow. I cant move due to fair of keep making it worse. I dont know what to do…

Im getting worse tinnitus constantly. Its so bad. And extreme pain in ears. Ive been reading in the forum, cant find anyone that hs relief of this kind of tinnitus eith surgery. Inly pulsatile sugery resolved… ive been searching for anssweaes. Itrs middle ear damsge… this is extremely bad, im vryong my ice out, im in hell… :sob:

It sounds awful, are you on your own, or do you have a partner or family to support you? It sounds as if you need someone to go with you to see your doctor as @Leah suggested, & if you have someone perhaps they could take a bit of the load off you & look into different complementary therapists in your area- like the craniosacral therapists that @Isaiah_40_31 mentions, or perhaps acupuncture or dry needle therapy , which some members have found helpful. And try either ice as others have suggested, or heat pads. I found heat helped with pain more for me but we’re all different. And some members have found a soft collar helps to keep their neck steady, maybe if you find that symptoms ease a little as you mentioned earlier you could try a collar to keep your head in that position?
I don’t know the system in Sweden, but in the UK we can ask for a 2nd opinion to see a different doctor if we’re not happy; would you be able to do that, or to make a complaint about your doctor if they won’t support you in getting more investigations or in a referral to a specialist?

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Thabk you. There is nothing to be done for catastrophic tinnitus. Pain can be managers somehow but the extreme tinnitus that keeps worsening, 3 yesrs now. Thats nit liveable. My fiance is here but I cant even be around my chindren do to extreme sensitivity to noise, it gives pain en worse tinnitus. I csnt even whisper…

Its torture to live this way… I tried everything under the sun for my tinnitus :cry:

Sorry to hear you are suffering with tinnitus and other symptoms @Maria87. When my issues started i had crazy loud tinnitus, i’d had tinnitus for 5 y previously, but it was SO much worse like 50 x louder. Eventually it did settle, but gets a lot louder if i am stressed or do chin tucks.

I found two things that were quite helpful. One thing was to identify the exact frequency of my tinnitus and play it for a while, when i did that, my brain switched off the internal noise for a few seconds - yes it came back quickly but it may have helped improve things longer term. With that information, the second thing that helped was there were some websites which could then generate white/brown/pink etc noise with the tinnitus frequency missing, i would play this in my ear for hours which gave me a lot of relief and helped me concentrate for at least a while using this distraction.

Hope things can improve for you soon

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So awful that you find being around your children too much …quite a few of us have had hyperacusis with ES, but not to that extent :hugs:

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@Maria87 - I have found that soft earplugs help a lot in reducing the discomfort from hyperacusis. It might be something you can try so you can spend time with your children during the Christmas & New Year holidays.

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Hi Maria, I think I know you from the FB group…you made some videos and I think I told you about this support group. I knew from what you are saying it’s you. This group has members from other countries so I thought this support group could give you more suggestions and support and possible recommendations for a provider in Europe or your country. Hang in there, praying for you!

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