10+ Years of Tinnitus/Meniere's Disease

Hold onto your seats! This is a bit of a long one, still haven't figured out what happened, but I thought sharing might help.

December 2009 - Laying in bed one night watching TV I begin to feel dizzy, felt like I had been drugged. Tried to "walk it off" thinking it was light headedness, after 20-30 mins it wouldn't go away so just fell asleep and felt ok the next day.

A Couple Days Later - Tinnitus begins, low ringing nothing too noticeable.
Couple days later while at work I begin to feel dizzy, left work and went home. Got home and instantly felt the spinning, couldn't lay down, couldn't stand up, began vomiting. This lasted for 1-2 hours before falling asleep for several hours. Upon waking up I felt exhausted.

January 2010 - Doctor's appointment - doctor said I probably have ear inflammation, prescribed Prednisone and to return in 1 month.

February 2010 - New symptoms, TMJ pain, clicking in the ear etc.
Doctor schedules MRI and an ENT appointment.

Spring 2010 - MRI, ENT appointment and hearing test. Could not hear higher pitch sounds on hearing test in my left ear, right ear was fine. Was told to return once MRI results were in. The rest of the Spring/Summer I felt fine, some tinnitus but no vertigo.

Fall 2010 - ENT specialist tells me I have Meniere's Disease. Asked what can be done. I was told nothing can be done and to not eat Chinese food. After 9+months of waiting and all I get was don't eat Chinese food!?

2010-2019 - Tinnitus on and off weekly, jaw clicking, ear crunching etc. No episodes of vertigo. Basically learned to live with it.

Fast forward...

November 2019 - first vertigo episode in 10 years, extreme spinning, vomiting, ear ringing etc. Lasted for a couple hours before falling asleep.

December 2020 - vertigo while working from home, spinning, vomiting etc. I went to bed, woke up 2 hours later back to "normal".

Throughout the last 10+ years I've researched Meniere's and tinnitus for hours on end. Thought about who, what, where, when and why.
I believe this problem is caused by me or my lifestyle.
My mother is the biggest health nut you can imagine so I've taken everything from Vitamin C, Ginkgo, B12, D3 with some results. Chiropractor, Osteopath TMJ Dentist etc.
Nothing provided much relief, but in all fairness, I never gave it much of an effort. A couple appointments here and there, vitamins and supplements for a week or two and just gave up.

Like I said, I believe something caused this to happen.

2008 - was in a major car accident, t-boned while in the passenger seat, walked away with only some neck pain. Never thought about it until years later.

Summer 2009 - had really bad allergies and decided to use a Neti Pot with mixed results, never thought about it until years later.

Summer 2009 - began wearing glasses for distance. Never thought about it until years later.

Background - was in my 20s when this happened. Now in my 30s - work a desk job 8 hours a day, smoke cigarettes and drink coffee - both of which I have cut back on but need to change that going forward.

Is this just poor circulation from years of smoking and working at a desk for 8 hours a day? Could the car accident have caused a shift in my neck which then led to TMJD and tinnitus? Can wearing glasses cause tinnitus and vertigo? Did the Neti Pot I used a couple months prior cause an ear issue? Why does this seem to always happen in November/December? Is this seasonal?

These are the questions I ask everyday haha. My tinnitus is constantly at a 4-5/10. Which I consider "manageable". Would love to hear your thoughts. Thanks in advance.

 

I would stab someone to have tinnitus at a manageable level. Mine just keeps getting worse. I have the crunching in the ear and pressure but no vertigo. Just mild imbalance at times. Wish I could figure it out. Severe 10/10 roaring/whirring tinnitus 24/7.

 

Have you had a proper work up?

I went to not only ENTs but THREE physicians that only specialize in the ear.

Only one of them appropriately diagnosed me and started a treatment plan.

One of the best doctors you’ll ever find is one that says I’m not sure what’s wrong with you, let me refer you to someone who might know more. These doctors who just do things for the sake of doing things are dangerous.

 

I've been to five ENTs/neurotologists in Detroit/Ann Arbor with no such luck. I had another MRI done today to check for a pinched trigeminal nerve. Very frustrated to say the least.

 

Sorry. I’m just now seeing this. Dr. Hong out of Michigan Ear Institute was the only one that helped me.

 

Interesting. I saw Dr. Wilkerson and Dr. Zappia from there. Guess I picked wrong.

 

Cinnarizine 15mg tablets state they can reduce tinnitus caused by Meniere's.

Love,
Glynis

 

The first doctor I saw there sent me home with cream for my eczema which I’ve had my whole life and doesn’t affect me, and the second one sent me home with vitamin D because we don’t get enough sun in the winter.

Dr. Hong diagnosed me with secondary hydrops and injected a steroid into my ear and started me on diuretics.

It seems to be helping so far.

My worst symptom was the ear pressure.

 

I also see Dr. Zappia at the Michigan Ear Institute. I feel like he really just brushes me off.

 

Yep he dismissed me last time I was in. Dr. Wilkerson said that I for sure have Meniere's and wrote me a script for Betahistine. Super expensive and doesn't help.

I'm sick of suffering everyday and want this to end. I can't stand this roaring. If it doesn't stop, I'm fucked. I'll be lucky if I make it another 3 months.

 

Ugh maybe I need to see the other guy there, Dr. Hong. I'm so sorry you're not getting the help you deserve.

 

Yeah I'm basically done with doctors. I've literally tried every medication that there is for Meniere's, diet changes, etc. Nothing helps. I have mild high pitched ringing which is annoying but the low pitched constant roaring is so debilitating. I laugh when people on this site say they wish their tinnitus was lower pitched lol. Mine is 500 Hz or 600 Hz and extreme. I can't escape it, can't mask it, can't do anything to make it quieter. I thought I was free of it in September when it completely stopped and my hearing returned to normal and I felt like my life was back on track. Nope, blasted by loud noise two days later and back came the roaring a week or so later. It's been five months since that happened. It is honestly criminal how little funding this ailment gets. I hope that when this drives me to suicide, my loss will drive more funding and research. No living person should have to suffer a life of hell like this. I hope that one of the drugs being developed works and cures hearing loss and tinnitus so nobody else has to suffer.

 

Like when @Danny Boy died and only $5000 was able to be raised.
Or when @Allan1967 committed suicide - zero shits and money raised.
Or when the semi famous drummer Craig Gill committed suicide because of inescapable tinnitus and the British Tinnitus Association was able to raise $2000.

My point is that nobody's (except your immediate family and a few people here for a few weeks) going to care about your suicide, no significant money will be raised, and most likely your suicide will be considered to be triggered by depression.

So don't do it. Stay alive.

 

I'm trying dude.

 

When all this first started, the injections seemed to help, but not anymore.

 

Not what I was hoping to hear.

I’m having trouble functioning. I’m an ER RN.

I struggle through the shifts, then sleep. I’m sure my new wife of one year is thrilled she’s stuck with me.

I’ll never be at peace again.

 

Sorry dude. At least your able to work. I have an MBA and post Master's certs and I'm sitting on my couch everyday. I've been unemployed for seven months and I'm having trouble getting disability. Whole situation overall is bullshit.

 

I empathize. You might try fasting.

I fasted (water only) for three days and followed it with an 18-day fast consisting of 1/4 carton diluted pineapple juice and 1/4 carton diluted apricot juice daily. So, basically, I ingested 1/2 a carton (2 cups) of juice per day diluted with hot water. My tinnitus, which filled my head and had made me stone deaf (no exaggeration) all but went away entirely. I was left at the end of the 21-day fast with the tiniest amount of buzzing in my right ear... almost nothing. My head was entirely clear of sound and I could hear normally. When I returned to eating on day 22, the tinnitus immediately came back in my other ear, much to my disappointment, but at a dramatically reduced level.

Since then, I've tried, at various points in my life, fasting one day a week, drinking only 2 cups of diluted pineapple juice on the fast day. It always helps. During the day of the fast, the tinnitus is typically louder. The next morning, after breakfast, the volume drops to a level lower than what it was before the fast. It builds up during the week, I go on a one-day fast, and the volume is cut the next day.

Of course, I'm only giving my experience and I have no science to back it up. I don't need it. I know the difference between being stone deaf and having blaring tinnitus, and being able to hear and having a mild whooshing sound in one ear.

I might add that I've also been diagnosed with Meniere's disease and vascular migraine. I'm also Christian. I say this, because I cannot discount the power of prayer. I believe juice fasting helps me, but I will admit that I pray throughout the day when I fast, and I prayed long and hard during the 21-day fast I mentioned.

 

It's great to hear others confirm what I have experienced. I now have several data points with significant reduction in tinnitus after fasting for 24-60 hours. It is so difficult to fast for 2+ days that I doubt that more than a handful of people with tinnitus have ever tried it. IT WORKS!!! And the improvement persists for days to weeks. Fasting is like exercise, intermittent periods of lack of food signal the body to clean, heal, regenerate etc. There is an explosion of studies confirming the incredible whole body benefits.

I eat mostly carnivore. I wonder if you would have even better results not eating any sugar during your fast? Maybe just broths with small amounts of fat and protein. This is the protocol used at fasting centers in Europe and Russia.

Good luck and good health.