Tinnitus of Unknown Origin: My Story Thus Far

I don't have a clear cause for my tinnitus. Always wore good earplugs at concerts. Have always been noise-sensitive (bothered by barking dogs, screaming children, etc) but at 66, I have very little hearing loss, according to the perfunctory and dismissive ENT I saw a couple of weeks ago. God, he was awful. Hardly glanced at my ears, then it was " Nothing you can do, not unusual at your age, here's a handout, bye!" A bit of background and detail:

• About a year and a half ago I complained to my PA about pain in left ear and very itchy ears overall. (I've had very dry, itchy ears for as long as I can remember -- very little ear wax.) She suggested Flonase. Didn't help though I did get a slight clearing sensation in both ears.
  
  
• A month or two after that, can't pinpoint exactly when, I noticed ringing in both ears -- but it was like really loud crickets or tree frogs. Not all the time, though. and the pitch and volume varied. Within the last 3-4 months it's morphed into a constant shriek that doesn't change in pitch or volume and doesn't go away. Masking noise helps me sleep (loud fountain sounds) and I recently bought a fountain for my screen porch. it's soothing, and masks the tinnitus somewhat.
  
  
• ENT visit and hearing test was a couple of weeks ago. The ENT everyone raves about has a three-month waiting list so I went with the guy my PA recommended. As mentioned, it was discouraging and not helpful.
  
  
• I am a musician who loves my solitude. (My day job is editor and copywriter for a large tech firm, working from home.) I simply can't let myself think much about the prospect of never experiencing silence again because I fear it will just immobilize me. I seem to do best when I don't think about it too much, but that only goes so far.
  
  
• I have had serious depression in the past, but the past 12 years I have done very well mood-wise with Lamotrigine and Cerefolin NAC. After decades of average blood pressure readings I am now on Lisinopril for high BP - I really think that is my body's' reaction to tinnitus. It started about the same time the crickets landed . I've taking Synthroid for years, take Dramamine and Melatonin for sleep but I don't sleep well. Used to enjoy THC gummies but despite mellowing me out, they seem to make me more sensitive to tinnitus.
  
  
• Random deets: I have frequent neck pain from an old injury, get queasy/feeling (but not dizzy) when I turn it in certain directions, like looking straight up. I have always gotten carsick and seasick. Not vomit-inducing, just feel sick to my stomach if try to read or look at my phone in the car. Also some tooth grinding I imagine -- jaws are sore in the morning. I have never been able to differentiate sounds very well in crowded situations. I don't know if I have hyperacusis or not, is that measurable? Sounds are certainly painful and annoying to me but I think I have always been that way. Thoughts welcome!

It feels good to have written this, actually, and of course if anyone reading this has advice I would love to hear it. I have to keep hope alive somehow. Also I live in Austin, Texas if anyone knows good resources here. I don't know if I would benefit from more doctor visits. I.e,, would an intuitive, listening doctor would tell me the same things as the guy I saw, only in a kinder way?

 

Welcome to the forum. Have you ever checked if you have TMJ problem since you have sore jaws? Also try read the success stories to stay positive, especially the story called "Back to Silence " by I who love music who is also a musician. Best wishes. God bless.

 

Hi @RM Brown, I'm sorry to hear about your tinnitus and the way it's been getting worse over the last couple of months. Unfortunately, you seem to have had the same kind of poor ENT experience so many of us here have had very early on in your tinnitus journey.

I don't want to discourage you from seeking help or getting a second opinion from another ENT. But in my opinion you've pretty much got it right on your first try. Have a listen to the latest Tinnitus Talk Podcast episode* and you will see that while there is research going on there isn't really much on the market yet to reliably help us tinnitus sufferers.

* Episode 20: The Man Who Donated a Million Dollars to Tinnitus Research

But have a look around the different threads, there are many people here experimenting with diet and supplements who have posted about their experiences. Maybe you will find something there that will work for you, too, or, if nothing else, prevent you from buying into a scam campaign.

As a fellow hyperacusis sufferer, I can say that the only thing that helped me when my hyperacusis set in was to cut myself off from just about any kind of noise. Fortunately, that was during self-isolation, so it didn't ruffle too many feathers but many friends and family members weren't and still aren't too happy with me and my new way of living.

However, I have been lucky because my hyperacusis got better / less sensitive after about 3/4 of a year, so maybe the same will happen to you if you allow your ears some time to rest.

All the best and keep us posted on your progress!
Leila

 

Thank you! Next step is looking into TMJ. Appreciate your kind words and all the support here.

 

Your labyrinth - inner ear.

It consists of bony cavities (the bony labyrinth) filled with fluid and lined with sensitive membranes (the membranous labyrinth).

Labyrinth.

Cornell Center for Materials Research - Why do people get seasick or carsick?

Labyrinth.

Labyrinth again.

With your tinnitus sounds - not being somatic, not sure if your neck or jaw is a tinnitus contributor, at least not primary. Not sure what your neck injury consists of without radiological notation, but occipital nerves probably have influence when looking straight up.

Treatments:

Neck - slightly cool moist compress - a rung out washcloth on neck with no pressure.

Mouth guard for upper jaw.

Labyrinth - talk to an experienced ENT for consideration of vestibular rehab therapy and antibiotics.

 

Thank you so much, Greg! Really appreciate your careful reading and responses.