Ear Tinnitus and Pain with Neuropathy

I won't lie. It really sucks, most don't know about it, and my experience so far is nobody knows what to do. I went to my husband's ENT, who was great with his messed-up nose.

Me, he brought back for a total of three visits and never did a thing. He was clueless, but got in those visits sure enough. $150 in co-pays.

This type of thing happens more than not for me. See a doctor, no clue. See another, no clue. Over and over.

NSAIDs can be problematic with tinnitus. I sympathize with your tinnitus noise as I suffer from the same noise and it is a veritable cornucopia of sound every day.

I have PN and recently, seem to be losing hearing with pressure in ear both ears

....just looked at a scientific page regarding tinnitus and hyperacusis and hearing loss .. which I have plus eustachian tube disfunction .. because to day has been quite bad compared to past months/years... and I only understood part of the tests they did and explanation etc., but I was trying to find the "bottom line" - which really seems to be that if you are "lucky" enough to have issues while on some medications and things return to normal after stopping those meds, but not always, that seems to be the only way out for majority of us; depressing for sure and fortunate are those who get hearing back, stop hearing the many odd sounds of tinnitus and the horrible hyperacusis: also read the hyperacusis can have flares for no reason and/or be initiated by actually hearing a noise... mine does that too when furnace on or been on loudspeaker on phone, or zoom meeting: every day its the same but different times, shorter or longer times, with or without pain or echo when speaking or blocked up feeling in ears. Many ENTs especially after covid and backlog are not even discussing it with patients... but I must admit I do sometimes wonder do I have a tumour or something.... while there are other illnesses that are life threatening ... and i survived cancer ... its the daily grind of all this and yes as you say, pressure in ears almost to the point of a bad headache. I am waiting for second zoom chat with a Dr.of Audiology in a nearby larger town but she has already said in so many words, no cure, but she discusses ways to try and not think about it, or use ear plugs, or such, so am hoping so much there will be at least one things she can help with. I feel for others with this so much and even one daughter has started with tinnitus but wont discuss it; I found out a neighbur has it and also when mentioned it said doesnt want to discuss it; other daughters partner same... but I do just in case conversation brings some ideas or suggestions how to cope. I also just read that stress does not help any of it and I am under a lot of stress so tomorrow I am going to try and focus a bit more on reducing it... but hard when have other issues and illnesses isnt it: just hoping that one days the scientists and specialists who are starting to find out how complex this all is, will discover a cure, for this and many other medical issues millions of people are coping with: wishing you the best and that you will find an ENT or someone who can give you some hope for your particular level of this unnerving ear/brain issue: hugs! J.

oh no sorry just realized how long this is, apologies, but having such a bad day!

Lacy, length is not a problem. Personally I like to get the perspective of others on these issues. Wishing you well.

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.