Ear Tinnitus and Pain with Neuropathy

Cheruip, I hear you (along with all that noise in my head that I endure day in and day out!) I wake up in the morning wondering how I am going to get through another day, but somehow I do. With hearing aids that have tinnitus maskers, ear buds with nature sounds and music, TV, stero or just anything that can help. Lucky me, my husband is sympathetic and says he wishes he could help. I know, he feels helpless not being able to do anything but take household chores off my hands. I guess tinnitus is especially bad because others can’t hear it. However I have read that on an MRI the areas of the brain where tinnitus shows up are really bright showing lots of activity. I have not had an MRI but I understand hearing protection is essential with people that have tinnitus or hyperacusis.

I have tinnitus. My grandfather got tinnitus and then peripheral neuropathy then he developed dementia.
My father followed the exact same pattern decades of tinnitus, the neuropathy, then dementia. I have had tinnitus for nearly 20 years. I have found out I may have the beginnings of dementia. I only discovered it through some research I was doing and had a SPECT scan for that purpose. The psychiatrist that did the scan thought it was either brain damage from a head injury or the beginning of a pre-frontal dementia. I have not had a head injury that I am aware of. I have occasional nerve pains in my feet but not very often. Are you aware of a genetic pattern of tinnitus, followed by neuropathy then dementia? Or any nervous system disorder that follows this pattern.

I can only speak for myself. I've had tinnitus for 22 years as a result of a sober fall down a flight of stairs on my back. I've had diagnosed Neuropathy for 3 years, of course I'd had it much longer, but the pain meds I was taking for chronic pain, masked it. Only after I tried to come off the medication did a Neurologist look me in the eye and told me that I had severe axonal neuropathy (whole body) even my face. Not all days are unbearable, I call it a different ride everyday. I know Neuropathy did not cause my tinnitus, I believe it is a vestibular condition caused from the fall. Hope this helps.

Welcome @terryarlen and @mstrplmber. I'm glad to see that you two have connected and shared your experience with tinnitus and neuropathy. It does help to know you are not alone and hopefully sharing experiences can provide help to others.

@terryarlen, Does this condition follow the pattern you mentioned?:
--- Hereditary sensory and autonomic neuropathy type 1E: https://rarediseases.info.nih.gov/diseases/11927/index.

@mstrplmber, You mentioned not all days are unbearable. The Foundation for Peripheral Neuropathy has some information you might find helpful here - https://www.foundationforpn.org/living-well/. Have you tried any complementary or alternative treatments to see if they might provide some relief?

I'M sorry for your situation. I"M in constant pain. I sleep well by using cannibis. During the day Tramadol helps.

My daughter is 39 and she just came back from do some diving in Honduras (and has done this many times)…but now she feels she has the symptoms of this Mail de debarquement. Fatigue, can’t easily look at spread sheets at work, etc. She has a dr’s appt on 3/24 with ENT. I hope so much that she does not have this; it’s so rare and you never know if it’s forever or how long it will last.

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

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