Ear Tinnitus and Pain with Neuropathy

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 😓

Yes, I have been battling tinnitus (loud and high pitched "locust" sounds in both ears) with occasional ear pain for over a year now. I, too, have Small Fiber Neuropathy and Autonomic Neuropathy. My hearing and ear health tests have checked out fine. I take Gabapentin, NSAIDS, midodrine (for Orthostatic Hypotension), and a couple of other meds as a result of breaking my thoracic spine in 7 places, 10 years ago. Those meds don't have tinnitus listed as a side effect. My tinnitus started, the same time I started to experience symptoms of my Autonomic Neuropathy which was just over a year ago. (My Neurologist had me undergo all of the testing at the Mayo for Autonomic Neuropathy/Dysfunction - having a concrete diagnosis in November). He wants me to see a specific ear specialist, as there may be something we can put in our ears to take away the very annoying tinnitus sounds. I haven't made that appointment yet.