First Post, and My Story...

Hi everyone,

Here’s my story, it’s long (sorry!) but I don’t want to leave anything out.

As a kid I got frequent really bad ear infections, to the point they put in tubes.

Fast forward I got into electric guitar in my late teens, and played in a (not that loud) trio in college. I think I wore earplugs often.

I later joined another band in my 30’s. I always wore ear protection, but our drummer was just too loud. All band members got T around the same time. I’ve had this low level T for years (10+). By low level, it was a high pitch single note in my right ear. I’d only hear it when it was super quiet, like going to bed. It actually went way down over the years, if not almost completely away.

We haven’t played much for years, and then a few months ago we decided to have a farewell gig. I wear ear protection during practice. We had a few practices, had our gig… After our gig I was excited about guitar again and started playing evenings at home—probably too much, and probably too loud. I know lots of people that play at much louder volumes, but my room wasn’t that big and I think the SPL may have built up. In any case, I think I had a handful (<10) of at home jams.

I’ve also been under lots of stress at work for months and a few other things.

I took a break from playing for a couple of weeks, and then caught a cold. With the cold exactly came a ramp of this new tinnitus. By day 3 I was in tears. Days 4-6 I was looking for a way out (contemplating suicide) and in tears just about 24-7. I’m normally super stable.

My new tinnitus is usually a hiss in the 8kHz range more in my right ear. Sometimes it’s a crunchy/staticy/computer noise that’s more in the center of my head. I feel like I’m the Terminator. The static mode is much easier to cope with though. It may flip flop modes once or twice during the day, or not at all. I haven’t figured out why it goes from one to the other. Sometimes if I doze off for a few minutes and wake up, it has changed. Sometimes I’ll exercise and by the end of the workout I’ll notice it’s changed. It’s not predictable though.

Initially there was nothing louder than my tinnitus. A semi could drive right by me, and the T is louder. Driving with the windows down on the freeway with heavy traffic: T is louder… sigh.

Concentration is harder now. If I’m having a conversation with someone, it’s like there’s a bird pecking at my head distracting me the whole time. So my cognition/memory retention is definitely down. I think it’s improved a little bit since this all started though.

I got some relief from our one showers, where the nozzle has this high pitch thing going on, and the water noise echoes off all sides. That is the place where the sound finally sounds like it’s emanating from “outside” of my body, which is very soothing.

I’ve been to the ENT, urgent care, audiologist, acupuncturist, hearing aid specialist who also had severe T, and am seeing a psychiatrist and psychologist. I have a holistic, whole-body medicine doctor next week. I’ve given up caffeine, all sugar and flour products, and am exercising a bunch now. I think I’ve lost 20+ lbs. I’m starting a mindfulness meditation for stress reduction class in a week. I want to give myself the best chance as a whole to combat this.

My recent hearing test shows my right ear down to like -45db at 8kHz, exactly where my ringing is. Left ear is not as bad but it’s down too

As far as drugs, I’m on Valium 2mg as needed, which is amazingly less and less frequent. Valium is amazing. The sound is still there, but somehow I just “don’t care”. I’m definitely trying to not abuse it. I’m on Trazodone 50mg for sleep—I feel it leaves me a bit groggy or hungover. I got a prescription for medical marijuana (tried non-psychoactive CBD so far only, and it seemed to make it worse and more intense, hated the experience). I may try the regular stuff once to see, but am highly skeptical.

They want to try a child-dose level antidepressant on me. I’m scared of that, as I read about these things being ototoxic and causing tinnitus! The 3 drugs they recommended were Celexa, Lexepro, and Remeron. The Remeron would also replace my Trazodone, so I think I’ll go for that one, but I’m definitely concerned. My father is on Remeron though for sleep and he hasn’t (that he knows of) had any bad reactions. He does notice some tinnitus though, but is not sure how long he had it.

They think that the antidepressant will lower the volume and help the brain rewire. The goals is for my mind to start treating this as an “unimportant” background noise. Right now my brain sees this noise as a threat—hence it wakes me up at night. They also want me to start all of this defocusing ASAP because they don’t want the mind to reinforce the “importance” of the tinnitus noise…that could apparently lead to a louder more permanent perceived volume.

Another thing they recommended is to always have soothing background noise or music on. Not so much to mask, but to distract the mind and help it lose the importance focus on the T. I’ve been listening to lots of Sinatra, even though I’m a hard rock guy. I also have found www.mynoise.net, which is awesome. There are some features which I wish it had, but overall it is great. I listen to Nocturnal Garden, and the Cicada noises help distract. Here are my settings.

I may try Desyncra, but wonder how effective it will be on me because of the high pitch and the fact that mine is a blur of frequencies. That’s a $6k out of pocket therapy, but if it works the price doesn’t matter.

Amazingly playing guitar (unamplified electric) helps. I think it’s the combination of my ear listening for the pitches, note bends, etc, and controlling my left and right hands, and scale memory, and timing. All of that takes brain power and takes the focus off the T. Hard to believe what probably gave me this new T is actually therapy.

I’m trying to stay positive and I know today I’m doing a lot better (mentally) than initially, but it’s still good days and bad days. Sometimes I’m totally fine and it doesn’t get to me, even though it’s always there. Other days, especially the searing note days, I don’t fare as well. I get scared and worry about my future. I worry about hyperacusis. I think I’ve had a little of it for years, but I definitely want to “not go there”. I really hope the volume will go down a lot over this next year. I keep telling myself “If it would go down by X much I could totally handle it..” I can’t tell if the volume has reduced over this past month or not. It’s really hard to gauge that because it’s so persistent.

Anyway, trying to keep my chin up! I'd love to hear any feedback on the antidepressants or other things worth trying.

-M

 

I like your positivity too. Don't worry about the future of the H. Most H will fade with time. Some members also find some drug useful for helping with severe H. But if your H is just mild, don't worry about H. Worry and fear can create stress and anxiety and the brain is not at rest which can cause the hyperactivity of neurons to fire up T. So do your best to stay positive in good days and bad. Eventually there will be more and more good days. Take care. God bless.