

From Vertigo to Tinnitus, Ear Ailments Are New Focus for Drugs - digisth
http://www.nytimes.com/2015/01/10/business/ear-disorders-long-neglected-attract-drug-makers-attention-.html?ref=business

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andrewstuart2
I have Meniere's disease myself and I have to say I thought I'd never see
anything about it on HN, since it supposedly affects 0.2% of the population.
That said, I'm very excited to see this article. While I'd never wish it on
anybody else, I'm glad somebody else who has it is trying to do something
about it.

I've been able to control the vertigo almost completely through consistent
exercise, and it often comes back when I slack off a bit, but my hearing has
never returned even partially, although I should maybe perform a more
consistent test to actually measure the loss. This article definitely gives me
hope that someday that might change, and I can stop having to turn my good ear
or constantly worry that something might happen to that ear as well.

~~~
anon_23423421
I also have Meniere's disease.

About a year ago I found this study:
[http://www.ncbi.nlm.nih.gov/pubmed/16885753](http://www.ncbi.nlm.nih.gov/pubmed/16885753)

The study (while incredibly small and perhaps statistically insignificant)
suggests that drinking excess water may alter the production of vasopressin,
essentially downregulating the body's retention of water.

I have tried to follow the recommendation (essentially drinking 100oz of extra
water a day) and can anecdotally say that it seems to reduce my symptoms and
is more effective in doing so than low salt diets, diuretics, and caffeine
reduction. Plus it's more or less free.

I'm not optimistic on getting my hearing back though, at least in the near
term. Best of luck.

~~~
chockablock
Another Meniere's sufferer here. Triggers for me are the typical ones:
alcohol, caffeine, high stress, sleep dep. Dietary salt doesn't seem to be a
big one for me. I had steroids after my first attack, and have also tried
various prescription diuretics and low-sodium diets, all to little effect.
Learning about and avoiding my triggers (and, like the GP, getting regular
exercise) has been the best bet for me.

I had a breakthrough a couple years ago when I was prescribed diazepam
(Valium) to deal with acute attacks. Apart from its anxiolytic effects, it's a
powerful vestibular suppressant, and works far better than anything I'd tried
before (e.g. anticholinergics) to control vertigo and tinnitus.

In fact, since I usually get a 'prodrome' (symptoms build over a few days
before a full-blown attack), I can get on the diazepam right away, and head
off the attack before it gets out of hand (starting at 5mg/day, fairly low
dose). This seems to also prevent the prolonged temporary hearing loss phase
of a couple months after each attack.

Thanks for the link to the water cure, that's a new one, and pretty
interesting. Best of luck to you!

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gregcrv
I am still recovering from a labyrinthitis I had more than a year ago. I was
indeed surprised by the lack of research in the ear field and how much doctors
don't know what is going on and how to fix it. Happy to read that some start-
ups are filling this void ! Good luck to everyone who has these kind of
issues, it's not a fun ride.

ps: for moral support I suggest to check out theses websites:
[http://vestibular.org/](http://vestibular.org/)
[http://www.dizzytimes.com](http://www.dizzytimes.com)

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dghughes
I had lots of ear problems as a child so many ear aches and trips to the
doctor but it all magically ended when my father quit smoking.

But all my life maybe once per year maybe twice I will suddenly get dizzy and
I mean within a second. I have to sit still and not even move my head or even
my eyes which are flicking back and forth as if I had just spun around for a
few minutes. You wouldn't wish this on your worst enemy, it's probably why I'm
not really into drinking alcohol I hate this feeling so much even the few
times I get it.

My mother occasionally gets it and once my father did too but just the one
time two years ago which was rare; we thought he was having a stroke so we
rushed him to the hospital.

When the doctor looked at my dad he explained it was called BPPV (Benign
paroxysmal positional vertigo) he explained it as a "rock" maybe calcium or
something like that lodging between cilia of the inner ear.

It made me wonder if this is genetic although as far as I know my sister has
never mentioned getting these dizziness attacks.

All the aging Baby Boomers are the target of new medicines I hope to benefit
from them when I am a bit older.

~~~
andrewstuart2
Avoid Aspartame like the plague. You'll see people say (regarding Meniere's)
that they've stopped drinking coffee, alcohol, soda and it helped with their
attacks. The one thing many of those have in common is the wide popularity of
"diet" or "lite" versions, usually containing Aspartame.

I noticed the same issues myself with Alcohol but it stopped almost completely
once I switched to non-diet drinks (still in moderation, of course). Then I
started getting attacks a little more frequently (the shorter "drop" attacks,
though). I realized the only thing that had changed was that I'd started up
again drinking diet soda containing, wouldn't you know it, aspartame. Since
that moment I avoid it and it's served me well, along with consistent
exercise.

I'm not a doctor, but I have a theory based on my observations that Aspartame
compromises the strength of the barrier around the inner ear. Because of how
I've felt the dizzy sensations start and eventually pass, I'm assuming fluid
buildup causes the inner ear lining (probably scarred by now if my theory
holds) to burst. This causes instant dizziness that subsides rather quickly at
this point, likely due to damage of the hair cells. In my theory, the lining
will burst either because it's been weakened (aspartame) or excessive pressure
(when I've slacked on my workouts), or more often probably a little bit of
both.

I'd love to get in contact with a doctor about it to explore the theory
further, since I can definitely lay down some scientific method and
observation, but my knowledge of the ear is probably pretty limited compared
to that of an expert. Up until now, though, most doctors I've talked to seem
to treat Meniere's as simply incurable and make no further time investments.

I just might try to reach out to this company and see if anybody there is
interested even just give me a good reason my theory is wrong.

~~~
annasaru
Very good info. During christmas break, I came off my exercise/activity
routine, and the symptoms are back, after a longish gap.Will certainly try
exercise. And avoid aspartame.

~~~
andrewstuart2
Yeah, I'm most confident about the exercise connection. Seemingly without
fail, when I slack off from my 3 workouts a week, my symptoms return about two
weeks in. And then when I start exercising consistently again, they subside a
week or two later.

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coupdejarnac
Though I do not have Meniere's disease, I've had tympanoplasties(eardrum
reconstruction) on both ears after sports accidents. I have mild tinnitus that
annoys me, but it's probably not as bad as what the chronic sufferers have.

Consequently, I started a company that makes mobile apps that help allay the
pain of tinnitus. Unfortunately, there is no panacea for tinnitus, nor is
there a scientific way to predict what kind of treatment might work for you.
Tinnitus is a symptom of an underlying problem rather than a disease itself.
That said, my apps employ a few treatment strategies including white
noise/masking therapy and notch therapy. These therapies are effective for
many people, but not all.

If anyone would like to try, my site is www.bxtel.com.

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netik
The key wording here is: " [this] will be something that people take every day
for the rest of their life,"

That means a large amount of research dollars can be dumped into a product
with recurring revenue. They never actually want a cure to be found.

~~~
refurb
_They never actually want a cure to be found._

Excuse me, but bullshit.

Yes you can have reoccurring revenue by creating a chronic treatment, but
don't forget you can charge _a lot_ more for a cure. Just look at what kind of
money is being made in hepatitis C.

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weef
My wife has been diagnosed with Meniere's so I know first hand the problems
that go along with it. I hope they can make some advance with these
treatments.

One thing I would suggest because it's something we have control over, is to
avoid prolonged loud noise as much as you can, e.g., concerts in a small
setting. I'm 53 years old and have been listening to loud music my entire
life, mostly through headphones, and it's starting to show recently. I
certainly didn't help matters by going to an extremely loud concert last year
in a small club without earplugs - this surely damaged my hearing even more.

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100k
I've had tinnitus since my early 20s and it is annoying but not such that I
can't live my life (I've read of people who suffer from apparent 90 decibel
buzzing). I have high frequency hearing loss and continuous buzzing,
particularly in my left ear. Even though it's not debilitating, I'm happy to
read that someday there may be treatment options.

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ahuxley2013
|Meniere's disease I remember hearing on the Joe Rogan Podcast, Joe Rogan
discussing going to Germany with Dana White, the owner of UFC. They did some
kind of blood transfusion treatment. Joe did it for his knee, and Dana did it
for his Meniere's disease, and supposedly it repaired his knee and stopped the
disease. I don't recall what it was called though.

~~~
bchjam
Dana White had stem cell therapy for his Meniere's. It costs something like
$7000 for a treatment and wouldn't be covered by insurance. Also no guarantee
that Dana White's issue is exactly the same as other Meniere's sufferers, he
was a boxer and that probably affected his condition.

If you have the money to spare there doesn't seem to be much downside to the
treatment but a big, expensive risk for most people.

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cnp
Funny there's no mention anywhere in the article about MDMA's seemingly magic
tinnitus healing properties. Studies are just now beginning.

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amelius
Any suggestions for patulous eustachian tube? The physicians I've seen thus
far seem mystified by the problem.

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pteredactyl
I wonder if wi-fi, mobile frequencies, etc. have increased these issues.

