Young and Newly Diagnosed

Hi Michelle,
I was in college when my Meniere’s first reared it’s ugly head. I woke up one morning and couldn’t hear. I thought I just had a cold or something, but I went to the school health clinic, the doctor used a tuning fork on me, and that’s how I got my first referral to an ENT. I was put on oral steroids, and most of the hearing came back. I was left with distorted hearing in the ear and chronic tinnitus. That’s as bad as it got for me for about five years, I believe. Unfortunately, after that five year mark I developed the severe vertigo. I’m almost forty now. At this point, I’ve now experienced every single symptom of this disease that exists, including the supposedly rare ones, though going by the experiences of others on this forum, they aren’t really rare.
As other members will tell you, don’t be scared by the stories or information you see on the forum. It’s a support forum, and those who need support are usually the newly diagnosed, and those who have had limited success with treatment. There are many people who have relatively few symptoms and live life without a problem, so they don’t need this forum!
You’re not alone in developing this disease at a younger age. ::hugs to you::

 

PS~as the disease progresses, IF it does progress, hearing loss is going to happen. Please remember though that yours may not progress! Also, there are many hearing devices available that help tremendously. There are hearing aids, cochlear implants, bone anchored hearing aids. Don’t freak out about the POSSIBILITY of not hearing. It won’t help, you’ll make yourself sick, and there are options. I have a bone anchored hearing aid myself.

 

Look into antivirals. You will find a lot on this board about them because they have stopped the disease for many. Good luck, do not despair, there are many approaches to this. I think you ill find something that works for you.

 

Autumninthefall, I was wondering if the hearing aid can be used when there's a lot of distortion?
That is my fear, that I can't even use hearing aids. When mine gets bad, I can hardly understand anything. It's very hard to work when you can't talk with people. The phone is the worst.And it fluctuates so much! I just cannot comprehend anything sometimes.
It's got me pretty depressed.

 

snuka,
I’m so sorry the hearing fluctuation/distortion has got you down in the dumps. You’re absolutely right~ it’s hard to interact with people at all when your hearing is compromised and those around you don’t understand, particularly a work setting. I got a BAHA at the same time as my surgical labyrinthectomy. The BAHA even has Bluetooth, so I can hear out of that side of my head since I had surgery. It’s not a perfect fix~ stereo is gone forever, but when my BAHA was turned on I was able to hear things I didn’t know I was missing. I could hear birds again, for example. That was my solution, but if yours fluctuates so much, maybe you’d be a good candidate for Crossfit hearing aids? We each find what works best in our individual situation. I’d talk to my doctor and audiologist about it if I were you. Hang in there!

 

I had terrible distortion in my only hearing hear from cochlear hydrops (menieres). I thought my only hope would be a cochlear implant down the road. Antivirals eliminated my distortion completely. I now have normal hearing in that ear. If you have not tried them, do give them a chance. In at least one trial, hearing was helped more than vertigo by antivirals.

 

Welcome! (and sorry you're here)

MM can be multi-factoral. It can be linked to viral, fungal and/or bacterial infections in other parts of the body, and usually more than just one. I had all three at one time or another.

Some folks here find relief with anti-viral medications, I'll let others speak on those mostly, but here is a scientific basis for viral causes: http://menieres.org/talk/index.php?topic=14.msg36#msg36

I have tons of viral antibodies from past massive CSV, HH6 infections, but no active infections.

Anti-fungals have helped other folks, including me. I had very poor gut health and developed a long-term systemic fungal infection (which I'm still fighting). Here is a scientific basis for fungal infections: http://www.papadisc.com/MM_Nystatin.pdf

The third part (for me) was discovered accidentally. I had a several 35 year old stealth dental infections from poor dental health as a youth, and subsequent botched root canals.

To see if you might have a dental exposure, please check out this thread: http://menieres.org/talk/index.php?topic=2830.0

PapaJoe

 

Welcome Michelle,
My hearing in the affected ear has improved some since taking anti viral med. I still have fluctuations.
I was only diagnosed a yr ago but came here before diagnosis as i needed the support and wealth of experience here. I remember noticing the hearing loss (left ear) as far back as 27 yrs ago; so if i had meniere's then it has progressed slowly for me. I've had the brain fog for many years but didn't experience the vertigo with vomiting until 5 yrs ago then a couple more times then again in Jan 2017 at work. I went to my internist and then a otolaryngologist who diagnosed me.
My best to everyone.

 

I was 31 when my first bout of severe vertigo lead to several hours of vomitting until I split my esophagus and went to the ER. It took another decade of intermittent attacks before I was finally diagnosed.

My case: I have classic Menieres - vertigo, fullness, hearing loss, and tinnutis. I've had one drop attack in all that time. I could have the vertigo every few months or every few days and it could last an hour or several hours. But then my life would move on until the next attack. I eventually found this site and went on JOH vitamin regimen and that kept the attacks at bay for several years.

That changed a few years ago when I started to experience frequent disequillibrium. In most cases, not severe enough to induce vomitting but enough to be dibilitating. From this site and discussions with my Oto, I believe the inner ear damage over all the years has led to my brain not being able to re-calibrate balance as well.

I went on anti-virals (with full JOH regimen) several months ago and was experiencing great relief - no symptoms with a significant return of hearing in my affected ear. Now just the last few days I'm experiencing mild dizziness (mostly during head movement).

If this all sounds confusing it is because this disease is confusing. I do believe the disease morphs into different categories of symptoms requiring different types of treatment.

If I may give you one piece of advice from my 27 years with this beast I would say to get a diary and document every day exactly how you feel and what you ate/drank/ingested. You have to take control of your condition or it will take control of you.

I wish you all the best.

 

Hello. My history mirrors Autuminthefall's story almost exactly. I had years of tinnitus and mild hearing loss that I could deal with, then things took a turn about a year ago. I've been through quite a bit and have found so much relief and comfort on this board knowing that there are answers, and more importantly we are not alone. I am now on antivirals and they have reduced my overall suffering quite a bit. The sooner you act, the more of your hearing you will be able to preserve. Good luck to you!

 

If your looking for alternative courses of action, consider upper cervical chiropractor (nucca.org). Consider a tmjd evaluation as well. Those symptoms can mimic Menieres.