What's Next for Me — Tinnitus from Congenital Nerve Damage

[Silvercatz]

Hi everyone, my real name is Michelle and I'm a 58-year-old female.

I was born with congenital nerve damage in both ears and spent my childhood years life wearing a boxed hearing aid that was strapped around my chest with 2 long wires attached to the box. At the end of those wires were, 2 hard molds fitted in my ears and these molds felt like glass with no give. The volume control was on the box that was strapped around my chest.

As I got older, fortunately, the hearing aids became a much smaller apparatus.

I've never learned sign language (wish I did) but, I read lips well. Today hearing aids are no longer effective for me as my hearing as my has worsened.

When I was younger and my ears would start ringing, I would tell everyone "my hearing is about to get worse as more damage is happening". I was correct as I would hear these crackling electrical surge with several loud ring tones. The tinnitus would come and go through out the years yet, has increased in frequencies, tones and decibels.

Today the tinnitus has an overwhelming effect on me, my life and how I function. I am a grandmother of 10, I love having them over and what a Blessing for me. However, I have to excuse myself into isolation because children, can be loud.

I am totally deaf to high tones (birds) but, I can hear some low tones (thunder). Regardless of what I can and can't hear, if the decibels are high my tinnitus becomes unbearable. Sometimes it's so loud that it hurts, gives me a headache, pressure in ears, nausea and dizziness. I've had brain scans to rule out any abnormality and nothing.

Sometimes, I wish I had something that can be repaired. I ignore the tinnitus for the most part until it becomes debilitating.

I don't sleep well because of insomnia for which my doctor prescribed a medication to sleep, however the tinnitus wakes me up. I am extremely jumpy when my tinnitus is on high mode and the sounds that I can barely hear are now enhanced.

I wear my noise-cancelling Beats headphones which are awesome. There is so much more I can talk about and for the 1st time, I feel as though I can safely speak without the critics viewing me as mental.

Yes, I suffer from depression being, a survivor of incest, losing my best friend and spouse through death. So yeah I have depression and yes I'm being treated.

When I began to just introduce myself I never thought I'd write a novel lol. Thank you so much for taking the time to read this.

God Bless all,
Michelle

 

[GregCA]

Welcome Michelle. You have quite a story!

Is there anything that you find helps you with your tinnitus?

 

[Tinker Bell]

Michelle, have your ENT and audiologist ruled out cochlear implants? I ask because one of my ENTs regularly does implants. Before meeting him, I saw an interview of one of his patients and her hearing loss story was similar to your own.

 

[Alue]

Welcome.

It's interesting that the high decibels make your tinnitus louder even if you cannot hear the sound. Does wearing earplugs in noisy environments help even if it means you cannot hear anything with them in?

Cochlear implant might be an option to look into like Tinker Bell mentioned.

 

[Silvercatz]

Hi, everyone. Yes I've been to see my audiologist and thank you for asking. I do qualify for the implant. I can't afford it because of the copay. I am on disability and my insurance is Kelsey care which takes over my Medicare. Yesterday I received a letter from The State of Texas, stating they will no longer help me with my premiums and my disability will be cut by $400.00 leaving me with $456.00 a month. I have been struggling to make ends meet and I do art work in hopes to sell some of it in preparations for the cochlear implant surgery. Now I'm on survival mode.

I'm sorry, I'm normally not this pessimistic, I'm not happy with what's happening in Texas as far as insurance premiums and shocked it's already happening before the bill was passed.

OK back to the question. I do wear my noise-cancelling headphones. Thank you for being so sweet, sometimes I feel like I'm alone in this and too see that others have the same problems dealing with this incessant irritating noises. When your tinnitus gets bad, do you get sleepy and fall asleep? Lately that's been happening to me unless of course I'm just plain ole" exhausted lol.

Again thank you for your kindness.

Michelle

 

[Tinker Bell]

Thanks for responding and sharing that. There is some crazy stuff going on with insurance right now in the US. I wish I was more knowledgeable about your particular state and could offer some advice.

Yes, I fall asleep despite my tinnitus when exhaustion sinks. I know some members use Melatonin to help them sleep. And many use a sound machine, but I'm guessing with your hearing loss that would not work very well for you.

It sounds silly, but for some reason I seem to fall asleep better after a warm bath with Epsom salt and Lavender.

I have some hearing loss -- severe for a few frequencies but it pales in comparison to what you're dealing with -- so you have my utmost respect.

 

[Alue]

Thank you for being so sweet, sometimes I feel like I'm alone in this and too see that others have the same problems dealing with this incessant irritating noises. When your tinnitus gets bad, do you get sleepy and fall asleep? Lately that's been happening to me unless of course I'm just plain ole" exhausted lol.

Your situation may be unique as everyone's is, but you aren't alone in dealing with these incessant noises. I'm sorry to hear about your insurance issues.

For sleep, some people take medications when it gets bad. I do, but as you probably already know, no medication is a good long term solution.

 

[Silvercatz]

Thank you all for your kindness, I hope and pray that one day we can all get some relief and peace. Sometimes I think "just give me 10 seconds of utter silence so I can catch my breathe."

Again thank you all for your kindness.

Michelle

 

[Silvercatz]

My name is Michelle and it's been several years since I've been on this forum. I was born with a congenital ear nerve damage leaving me partially deaf. I was taught how to speak and naturally I learned how to read lips... As a child I would randomly have a tinnitus attack that would only last a few minutes but, nothing bothersome. As I got older these attacks grew with intensity (loudness) and linger on from minutes, to hours, to days, to months, to years and now at 62 I'm at my breaking point.

I remember the last time I was here, I said "this can't get worse" and it has.

I'm sitting here wearing my headphones to shut out any sounds as it causes my head to explode as the sounds are amplified. Just imagine a drill sergeant yelling in your ears 24/7 with just simple noises like closing the door. Then you add the screeching and a sense of vibration in my ears. I'm sure its being fed off of my brain with damaged nerves causing the sound to bypass the proper channels. My head feels heavy, I experience fatigue and vertigo. Because of torturous pain, I'm grinding my teeth and now my jaw is dislocated and locked. If I try to chew food, my jaw pops and locks.

I've aged at least 10 to 12 years and my family are somewhat shocked when they haven't seen me in a few months and even I'm shocked. My only means of escape right now are prayers and painting as it takes my focus off of it for a while. My mother and I have lived together for a few years as we are both widowed. The past few years I've been my mother's primary caretaker and now in the past year I've become debilitated.

The past 2 months now, my sister is taking care of us both. I have grandchildren I can longer see due to the noise and of course COVID-19. My short term memory now is shot. Most days I am anxious and depression is at my door growing like a dark cloud. I've been pretty good about my health like eating right, drinking water, taking vitamins, exercising, getting a yearly physical, seeing my ENT, going to the dentist etc.

I've had all Bone scans, MRIs, CT scans and I've seen different doctors. Nobody has an answer yet. Marijuana worked for a while and Xanax calms my anxieties. When the screeching becomes relentless in the evening, I can't breathe or catch my breath. It hurts everywhere, everything and everybody around me.

I'm at my breaking point and this is not living. This is me trying hard not to die and try to find some small minuscule piece of hope. I'm ashamed as this has won the battle and has defined who I am right now. I just feel numb.

 

[durham20]

Thanks for sharing your story. You are one of the tinnitus warriors I admire.

 

[Lane]

Oh my goodness @Silvercatz, what an ordeal you're currently going through (and have been through in the past). Though I can understand your disappointment in being unable to cope better, there's certainly nothing that I can see for you to be ashamed of. In fact, you seem to have made valiant efforts over many years to carve out a normal life for yourself despite your challenges.

I don't know if you would be interested, but I made a post recently which gives some insight into some of the things I've discovered (and used) to help me cope with my own lifetime of difficult health struggles. These things include various spiritual techniques and energy balancing exercises. Others who have tried some of these techniques have told me they benefitted from them as well. This link will take you to that recent post. Maybe something there will interest you.

Given your past history of resilience, I suspect you're still in some way searching for way(s) to make things better for yourself. Perhaps that's part of the reason you decided to come back here and post again. To maybe open up new avenues for you to explore. -- I sincerely wish you all the best as you go through your struggles, and hope you can find something new to help you through this new phase in your life. I'll be rooting for you from afar!