Ear Tinnitus and Pain with Neuropathy

The Hearing Health Foundation does research in a variety of areas related to hearing, balance, etc. This recording was just posted on their site. I did not listen to it, but having read your post earlier, I thought it might be of interest to those involved in this discussion.
https://hearinghealthfoundation.org/webinar/recordings/hyperacusis-salvi-01-23-23

I've had tinnitus for many years. A very good neurootologist told me to be very careful of sodium and caffeine as they raise the fluid levels in the ear. Helps. So much salt is added to foods especially processed and in restaurants. I drink decaffeinated now and limit chocolate.

I’m so glad to have found this forum. I have struggled for years, trying to put everything together. I’ve had every test on the sun. CT scans , venogram, angiograms MRI full head scans.…. I started with neuropathy in 1997. From Epstein-Barr while I was on steroids, long-term for unrelated condition. It started in my legs but when I had to get off of it for pregnancy it would spread during that time to other limbs. It was painful as I’m a nurse and worked on my feet all day so my legs always aches horribly. But it wasn’t until I got sciatica three years ago and ended up with a laminectomy and then months later a spinal fusion that triggered a worse response and flared everything up. Since then, I started getting ear problems, first moisture in my ear, horrible itching, fullness popping/plugged, then tinnitus, then pulsating tinnitus. I also have shortness of breath, sweating, horribly dry mouth, ortho static hypertension, then neuropathy spread to my central nervous system now I have numbness in my thoracic and in my head. Horrible brain fog so terrible that I took a cognitive test. It’s been affecting my job, couple painful and swollen joints, I have Hashimoto thyroiditis, Ehlors Danols, positive ANA and titers 1:640, immune mediated neuropathy confirmed with biopsy and lab results. I have antibodies to FGFR3 neurons. Ofcourse insurance denied the IVIG that would’ve probably help. I get rashes a lot, norapathic itch, allergic to the sun, VERY low activity tolerance, dizziness, new answer, difficulty swallowing at times… MY FEET ARE FROZEN!! I have five electric blankets everywhere I sit around the house. I have red rings on bottom of my feet from loss of circulation. So yeah basically autonomic dysfunction. However, the worst thing of all and what I’ve been experiencing the last two years is my head that feels like it’s going to explode. The pressure in my eyes is unbearable, I’m full of mucus all the time. My sinuses are clogged. But CT scan showed no mucus???? Although it’s there every day running down the back of my throat and stuffy nose. I’m basically feel like I’m sick 24 seven with that sinus infection or cold/flu. Neurologist checked a bunch of my levels and I noticed one of them was a low IGM. He didn’t do anything about it, as it was just ordered with other labs he was looking at, but then I got to thinking maybe it’s giving me these respiratory issues. Which is very possible … So I had to begged an ENT to send me to an immunologist. It’s about the only doctor I don’t have on my list of specialties. She was not the very nicest person but is doing a lot of labs. Wants me to jump through a bunch of hoops like everyone else does when they are new doctor. It’s exhausting. But I can’t live like this. I’m absolutely miserable. If not been for my husband and children, I’d probably live in a homeless shelter. EMG a while back, showed that I also had large fiber neuropathy, inflammatory neuropathy, radiculopathy. lots of weird infections in nearly every system of my body. The list goes on. And ENT thought my problems were migraines, or ETD, but I’ve taken three different injections for migraines and none have helped. That took two years to get through all those jumps and hoops that insurance companies make you go through. As things get worse, you start just wishing it was back to what you thought was the worst years ago….I’m so Miserable!!! My head hurts 😓

NSAIDS alone can cause tinnitus. Aspirin and salicylates are notorious for this. If you do a google search for medications that cause tinnitus, you will find a big list. It is shocking how many can. BTW gabapentin on the other hand is used sometimes to help treat tinnitus.

Sounds like allergies causing the head pressure. Have you seen an Allergist yet? That being said they still haven't helped me with my head and ear pressure after several years. Worth a try though.

Omg!!!! I know this is years later but I have been battling these symptoms for 3 years now and never ever seen anyone write anything similar to how I feel! Please let me know if you are still active here. I’ve been misdiagnosed (Ménières, migraines, anxiety :(…. and I gave up for awhile but I moved to a different state and my dr encouraged me to figure it out. I felt like my symptoms happened in a split second. Ear fullness, extreme vertigo, tinnitus and right face “tightening”, I don’t know how to describe the feeling. Thought I had a stroke. Now I have terrible tinntus 24/7 now for about a month and other odd symptoms. Carpal tunnel bilat, eye floaters…. Hope you see this!!!!

I HAVE SMALL FIBER NEUROPATHY AND TINITUS.ALSO!

NSAIDS are a major possible cause of tinnitus. You may want to talk with your ENT or primary care doctor about all of the meds you are on. Many meds can cause tinnitus, including both Rx and OTC. You can also do a google search for "medications that cause tinnitus." There are so many it is way too many to list in a comment.

Hi, I suffer with small fibre neuropathy. I get huge exacerbation periods as well which involve my gut. But I cope with it by staying indoors, dressing in cotton, not washing with soap or any sort of detergents, no make up, no gold jewellery, no jackets with poppers for approximately 6 weeks. I am nickel and cobalt allergic. At the end of the six weeks, I am free of the electric shocks. I think I suffer with metal poisoning from jewellery. I wear pearl earrings mostly but am suspicious of the glue and it somehow forcing the metal into my system. I also have Tinnitus and yes, it is part of it in my humble opinion. I am coming out of the latest exacerbation at the moment. This time, its nearly killed me. I am having further tests shortly. No more pearls or jewellery with glue for me. Hope this helps you.

I initially started with neuropathy that was the result of prednisone that I took during my treatment for prostate cancer. As time went on, my neuropathy got worse and about 2 years later I began to experience tinnitus. Now the tinnitus has gotten louder and at times my neuropathy in my feet is like cymbals playing in a band. I can quite the neuropathy with compression socks, but nothing seems to quite the tinnitus except sleep. I have tried sound therapy at 4500hz that seems to slow it down but only as long as I use it. I hope to find a cure for both problems.