New Member: Not sure if I have Meniere's. Neither is ENT

That might be called cochlear hydrops rather than Meniere's but it is the same thing. It depends on exactly which part of the tiny tiny inner ear the problem occurs in whether it is called cochlear hydrops, endolymphatic hydrops or Meniere's. Cochlear is when it occurs in the hearing part only, endolymphatic is when it occurs on thr balance part only and Menieres is when it occurs in both parts ‘the whole enchilada’ as my dr explained it to me. I have cochlear hydrops, the first dr who diagnosed it as ‘early Menieres’ the inference not very encouraging. The point is it can and does progress to classic Menieres with vertigo in some but not all cases. The doctor who diagnosed me first said the episodes such as you describe decrease the elasticity of the inner ear and each one pushes a little towards classic Menieres with vertigo so it is important to follow the advice of doctors on how to reduce these episodes.

In my particular case, i was treated with antivirals and allergy testing and shots and the progression of the disease stopped and i regained most of my lost hearing and stopped having episodes such as you describe as well as awful tinnitus, autophony and other strange and difficult to live with hearing problems.

How people experience this disorder is very variable and can even change ithin the same person. All that said, menieres is a disease diagnosed by exclusion of any other known cause. Usually the dr will do an mri and other tests to rule out other causes, such as a brain tumor etc. the dr who specializes most in menieres is a sub soeciality of ent called a neurotologist, an inner ear specialist.


Good luck.

 

Oh my, i too had an acoustic neuroma in the right ear removed by surgery in 1997 which left that ear completely deaf and the balance nerve destroyed. I was told by more than one dr that it was a known that menieres/ch etc were sometimes a side effect if acoustic neuroma in the other ear. I was told, hold on here, that ‘sequesterd proteins’in the operated or injured ear were released and once the body got wind of their existence, it may attack them. The thing is, these are the same proteins in the good ear so the good ear can eventually suffer after the injured ear has been attacked by surgery or whatever.

My family dr always had a suspicion a virus could be involved but declined to spak about it til the ent’s gave up. I had had a very bad case of cmv (herpes 5) mono 9 months before. She said, ‘you know if a mother has cmv, the baby can be born deaf’. Anyway, she said ‘if you want to try it i will prescribe it’. I was reluctant becaus i am the queen .of side effects but she said these were pretty benign drugs. I took 400 mg of acyclovir 5 times a day, it is important with acyclovir to spread it out through the day. Day 1 and 2 no change, day 3 my distortion got worse but in a kind of new way, day 4 and 5 my autophony which i hated most of all the symptoms begain to cut in and out. My symptoms were mostly constant so i could notice this. After about 6 weeks i judged my symptoms about 60% improved which was great but i stalled there. My family dr really had never treated this in this way so i went to Dr Derebery at House Ear in LA. She used famvir and allergy shots.

I did not have classic hay fever but i was allergic to bees. I tested allergic to a lot of environmentals like mold, pollen etc.i took shots for year and now i have normalish ears, well one ear anyway.

It all came in me when were were putting an addition on the house and i was exposed to anything and everything. It was very bad, ranging from episodes of almost total deafness to some balance issues and constant distortion and autophony and extreme tinnitus. I never expected tomhave the complete recovery i did but it took months and years. But the antivirals did a lot in a month. You might want to give up caffeine too. That helped a wee bit. Good luck.

 

I was told the theory of the allergy shots is it is all immune system related. All in the same bucket. They told me, imagine the immune system is a pitcher of water. Every time your body is stressed by allergies or illness or whatever, it puts a glass of water in the pitcher. When the pitcher over flows, then it will manifest itself in whatever way the immune system is acting out in you, in us cochlear hydrops. So you want to take away as many of those stressor agents as you can and allergy shots is one way. Well that is the theory. I can just say it worked foe me. Another thing that happened was my ankles quit swelling. I told Dr Derebery that and she said she did not have the answer as to why other than to hypothesize but i was not the first patient to report that. But in my book, the antivirals saved me from losing all useful hearing, developing vertigo and removed horrible autophony and tinnitus and stopped the progression of the disease. I now enjoy mmusic and ride a bike and i am 70 years old. The ch happened in 2008.

 

Any new info, Dale, from your last appointment?

I definitely have Ménière’s, but in the early pre-diagnosis days I had only faint tinnitus. Then I developed unilateral sensorineural hearing loss.
I realize now that my care was sub-par - that presentation should have got me a trial of antivirals and steroids within a day of presenting.

I was having brain zaps and vertigo episodes whenever I weaned down my Effexor, so I didn’t connect those episodes to my ear symptoms. Eventually it all became more obvious.

I don’t know if this helps any... but keep us posted of your progress.

 

LOL. I love some of these doctors who brush off antivirals as hooey. Diuretics didn’t work for me but that doesn’t mean I’m going to poo poo them anytime someone brings them up. 2 years I put up with constant vertigo then I started antivirals and now 3 years no attacks. Stick that in your pipe and smoke it Doc. Quack. Don’t make me say what I really feel.

 

My Ménière's started the same as what you're describing, so the doctor didn't mention Ménière's for six months. The first few audio tests came back normal and I never had any dizziness, so he prescribed nasal spray and antibiotics and told me to come back in four months.

When I returned, the fullness/tinniness were constant. My ear would ring like a fire alarm. My low-end frequency hearing was gone when they tested it. That's when he diagnosed Ménière's, and warned that I would probably start with the vertigo soon. Within a month of that, I started having really disabling vertigo/nausea attacks. I've since determined that the attacks (hopefully)were caused when I switched to shredded wheat for breakfast to lower my sodium intake. When I stopped eating it and the attacks stopped. I did test this weekend; I had some shredded wheat to see what would happen, and wound up on my back for seven hours.

In short, this could be the start of it.

 

I had one symptom a year ago. I have them all now.

 

My vertigo attacks cut back dramatically when I cut out all gluten. I can't even have gluten free oats. So mainly brown rice and non gmo corn. So before I went gluten free I felt poorly and had vertigo regularly. I now am on the JOH regime, gluten free and generally get a mm vertigo attack once a year, but I will admit when I get them they are not pleasant and last a month. Usually set off after I have got a virus or something. Best to you! Bonnie