I'm a Wealth of Knowledge at Your Disposal — You'll Adjust to Your Tinnitus, You'll Get Through This

Woke up one morning in 2004 with distortion in left ear. Over the course of coming months developed sever hyperacusis and tinnitus. Distortion slowly spreads to both ears. Men’s deep voices are the worst.

Gradually improved to full recovery but have been plagued by mysterious bouts of distortion (voices sound like robots and deep voices sound like monsters) that will unpredictably wax and wane. Distortion starts slow then builds worse over weeks or months then gradually improves. In all these years, I’m still perplexed as to the cause.

I have gone years without attacks but have probably had 10 of various degrees over the past 17 years. I recently have been dealing with another one now. Tinnitus is hissing high pitched and everyday sounds (birds chirping, refrigerator running, chime of my car door being open, music) out of tune and very bothersome. Maddening at the worst.

These hearing issues ramp up my sympathetic nervous system. I involuntarily wake up early and am easily started. I’m often nervous and jittery.

I’ve been to the best ear doctors in the world. Jastreboff, UCLA (Dr Baloh), James Andrews in LA, The House Clinic. No one really can give an answer other that cochlear hydrops but that’s very vague in terms of cause and treatment.

I tried everything... Diuretics, TRT, allergy testing, Prednisone, anti-virals, chiropractic, TMJ, even all kinds of supplements and alternative medicine. Probably have spent $100k on treatments but here I am again, afraid of sound, wishing they cut just cut my hearing nerve and give me peace (although I’ve heard that doesn’t make tinnitus go away). The one thing that helps is Klonopin (benzodiazepine) for the hyperacusus. It works great but isn’t good for long term use because of my addictive/dependence nature.

I’m a wealth of info if you have questions. I’m here to tell you the body adjusts. You WILL get through this! I can’t tell you how many times I’ve considered suicide at my depths but you just keep going and either you acclimate or improve. Since my symptoms began I’ve raised a family, traveled and built a career. You’re stronger than you know! It’s ok to hide in your dark place because you’re scared but hope cannot be lost. You’re loved. We’re all one connected organism and the strength you’ll gain and the discovery of how resilient you are will be a gift that this monster will bless you with. Take each day and remember, breath.

 

@joconne16, thank you for sharing. It appears you have the ability to try many tinnitus treatments and I thank you for sharing. I'm hoping for better treatments or a cure.

G-d bless! Keep posting.

 

@joconne16, welcome to the forum. Thank you for sharing your positive post. Feel free to lend some support to new members who are suffering. Your positive message will definitely help them survive the storm of tinnitus. Take care. God bless.

 

Thank you for sharing! Going through some tough times and this gives me hope!

 

You sound eerily like a few of us youngins with this extreme form of tinnitus. My own voice has distortion, and in the morning if silent in the room there is bilateral "intense jittering" sounds is the best I can describe it. This only occurs after a full sleep, not really so much if I wake up and the rooms still dark (cortisol/ACTH cycle?)

If I'm exposed to too much noise it absolutely induces more distortions. White noise sounds like a complete mess of beeps twittles, hums.

The worst is it seems to learn from other sounds. If I hear a train track crossing bell go off in the distance, or a loud pure tone, my tinnitus will MIMIC it after the sound ceases. That bell is in distortion or that tone over peoples voices when they speak (truly madness/suicidal).

The only thing I can say is mine was getting better then suddenly worse for no reason, then better, then made worse by intense sound. Apparently anything over 60 dB can set me back/cause new distortions to form several days post trauma.

What tests did you have for hydrops? Does yawning ever create a sound for you in either ear? Do you ever get exploding head syndrome (loud intense "vrrrooom" in one ear, then maybe the other, randomly at night/5 am).

 

I live in the same area as you. House Institute was the first place I went, about 5 days after my tinnitus started. They really were not helpful at all. I have not heard of Dr Baloh or James Andrews. I am currently seeing Dr Lin and Dr Djalilian at UC Irvine, and they are beginning to try some different treatments out with me. Nothing new or groundbreaking, but better than being told to simply habituate.

 

I guess TRT didn't work for you, but did having maskers help at all? Did they at least make it any more bearable while wearing them?

 

The maskers are helpful at blocking out the tinnitus with white noise. The issue with the maskers is that my hearing would always improve within a week or two and I would stop using them.

 

Have you tried LDN (Low-Dose Naltrexone)?

 

@joconne16, thanks for an inspiring story. I have also been dealing with severe reactive tinnitus from 2013. Had some rough times but despite the challenges with my tinnitus, I also had grate success at work and established wonderful family. Like you I tried everything and spent a similar amount. Also donated many times that to research. For now I am exploring if dry/wet fasting can make things better. I believe in the general benefits of fasting.

I would say that I live my life quite normally except that I always take it very easy with sounds. My threshold to make things worse is much less than the recommended 80 dB. I am now skiing with my family and I hate those snow cannons (despite wearing protection). I tend to stick to cross country skiing. I would never go to an after ski but a not too crowded restaurant would be ok if I again use proper protection. I lose some nuances of the conversations with in-ear hearing protection but in general I am ok.

How do you deal with sleep? Even if I struggled with a rough tinnitus day, I tend to sleep well which amazes me. Sleep was only a problem in the first years after the onset. Sometime I also take a Benzo but I try to limit it to a few times a week. I was on an SSRI for many years but sopped that 6 months ago. I do not notice any big difference.

Always admired @billie48 for his amazing attitude. I am glad that you dropped by the forum. We need more examples of people living a good life with severe tinnitus. Just to balance things up on the forum.

Wish you a happy ending of 2021.