Questions on Endolymphatic Hydrops

[Danig]

Hi there!

I've been reading lately on this condition --endolymphatic or cochlear hydrops--, but there are some questions about it that remain unanswered to me. Perhaps some people here can share their knowledge about it.

- What type of tinnitus do you hear when you have hydrops?

- Low-salt diet + extra water + possibly diuretics seems to be the most recommended treatment. Does this work in most cases? How long should you keep on this diet before you notice results?

- Sugar, dairy products... These are also mentioned, but not so consistently. Should we give these up too?

- If you get rid of EH through this diet, will you eventually get it back once you return to your normal food habits? Or would it require an extra trigger?

Thank you all for your responses.

 

[Danig]

No one?

 

[glynis]

It resembles menieres in most symptoms without the vertigo and treatment similar.
Menieres is a progresive disease leading to hearingloss and sever tinnitus.
With hydrops you form crystals on the tiny hairs in your cochlear so it is a inner ear problem and not middle ear that focuses on your earbones and ear drum and eustation tubes.
I don't know if its cured or just controlled.
Love glynis x

 

[tato]

Hello,
Long winded message, so hold on

short version:
type of tinitus during hydrops crysis= same as always
low sodium = most definitely works for me
extra water = no extra. Same as recommended, 2 liters/day
diuretic = not touching that stuff ever again, see long version
how long keep diet 'till notice results = at beginning it took 1 week.
sugar = It depends on each own body balance liquids/etc, hence the inconsistency reports.
Dairy products = they contain sodium, so keep an eye on it.
Give up Dairy,sugar = If needs be, but 1st watch sodium. After a while then attack dairy/sugars.
If you get rid of EH through this diet = I don't know if you can get rid of it or the body regains balance.

Long version:
- What type of tinnitus do you hear when you have hydrops?
----Hydrops hasn't change it. Constant 10khz tone on affected ear + "random" crisis.

- Low-sodium diet + extra water + possibly diuretics seems to be the most recommended treatment. Does this work in most cases? How long should you keep on this diet before you notice results?

Sodium:
I was already in the "norm" of 1500mg/day prior to diagnose, so bad news I had to reduce it to a level where food becomes "meh".
In my case it most absolutely works.
It 1st took a week to see an effect. Now, if I'm absent minded and go over a certain level, it takes 12h up to a day, worst case two days after.
And by low sodium, I mean really low sodium , 400mg. Anything above 500-600 and the symptoms start to come back. I'm still trying to find the limit/balance.
All this investigated with a food journal for sodium intake per food and per meal and per day. The correlation is clear in my case, as soon as sodium intake goes up or there's some spikes, hydrops starts to appear. So I guess I'll have to keep it up until I die or body cures/regains its balance.

Diuretics:
After 1 month on diuretics, I ended up in hospital, under observation, for 2 days , with an intravenous drip, for critical kidney insufficiency. I'm one of those exceptions, most people are fine with it.
Some foods are natural diuretic, although at a lower level that any pill. So since it might help, I've made sure to absolutely incorporate/increase those into my diet. Same thing for vasodilators foods (brocoli).

Extra water:
No "extra" , just following the "standard" of 2 liters liquid/day and it's fine.

Sugar:
It's in the "maybe/not sure/anecdotal/it depends on your body" category.
Might have an effect on sodium or other foods absorption.
Most surely has an effect on insulin levels, ask any diabetic person.
Might have an effect on severity of tinnitus.

Dairy:
Dairy products do have sodium, so keep an eye on it.

Giving up on dairy/sugars: The idea is more of reduction than complete elimination. But if it's needed, so be it.

hope this helps.

 

[Danig]

Thank you so much guys for your answers. Tato, your comments are very insightful. Even if it's great to have found a working solution, it's a bit discouraging that you have to keep on such a strict low-sodium diet for all your life if you don't want your symptoms back. Unless one has a very annoying type of hydrops, the question arises on which of those two things mostly affects your quality of life.

 

[tato]

Hi Danig,
Well like i've mentionned i'm still tring to find a balance during the day.

I prefer to have foods that are "meh" than the alternative.
I've found that hydrops, to a lesser degree than meniere, will destroy the inner ear as time goes on. I'm guessing the destruction may be done everytime that there is pressure of buildup extra liquid against the cochlea. So if I can evade all the crisis that cause that extra liquid/pressure, so be it. I will not let my hearing go, there's no alternative, it's sacred.

 

[VRZ78]

Hi Danig,
Well like i've mentionned i'm still tring to find a balance during the day.

I prefer to have foods that are "meh" than the alternative.
I've found that hydrops, to a lesser degree than meniere, will destroy the inner ear as time goes on. I'm guessing the destruction may be done everytime that there is pressure of buildup extra liquid against the cochlea. So if I can evade all the crisis that cause that extra liquid/pressure, so be it. I will not let my hearing go, there's no alternative, it's sacred.

Hey,

Can you give example of which food you're eating in your low sodium diet ?

 

[Danig]

I've found that hydrops, to a lesser degree than meniere, will destroy the inner ear as time goes on. I'm guessing the destruction may be done everytime that there is pressure of buildup extra liquid against the cochlea. So if I can evade all the crisis that cause that extra liquid/pressure, so be it. I will not let my hearing go, there's no alternative, it's sacred.

Interesting. Articles I've read on hydrops so far didn't mention the fact that, if untreated, it leads to a progressive hearing loss. I would love to see a medical source that states such an important thing, if possible.

 

[Thissucks..jenn]

10% chance just hydrops can cause low frequency hearing loss btw

 

[tato]

Hello,

Foods that I eat :
No limit on type of food I eat, I eat everything. If there's a limit it's base solely on sodium that it has. Easy for me to say, I don't eat out(restaurants/etc) and don't eat processed food.

One food I've eliminated for the moment and it's bread. For ex: a 5th of a baguette that I used to buy has 310mg. I don't know if you've looked at a 5th of a baguette but you can't really make a sandwich out of it. So double that size to get a real sandwich but you're at 620mg. That's just the bread, you still did put anything on it, you still didn't eat anything else and it's only for that meal.

I know that low or extremely low sodium is not the (only) answer, but you gotta start somewhere. It a matter of balance of sodium, potassium, sugars, electrolytes and who knows what else.


Sources for damage to inner ear with hydrops:
Wen diagnosed I started looking/reading. Here's a few links found it my browser history :
http://vestibular.org/secondary-endolymphatic-hydrops-seh
http://vestibular.org/understanding-vestibular-disorders/treatment/vestibular-diet
http://www.dizziness-and-balance.com/disorders/menieres/hydrops.html

After reading these and surely others, when I went back to my ENT (specialized in inner-ear), I've asked him about the damage/destruction. He confirmed it. Hydrops may cause damage as time goes on, less that meniere, but it's there.

 

[Danig]

Just for the record, I've been trying this low-salt, extra water diet during the last two weeks, with the hope that my T was caused by endolymphatic hydrops. But I haven't noticed any change so far. I still have the same constant hiss in both my ears, together with the low-pitch rumble produced by (I believe) a heightened blood pressure in or near my ears.

After having discarded other causes (and their corresponding treatments) for my T, like noise trauma, hearing loss, head injury or Eustachian tube disfunction, I'm now also discarding hydrops. Will keep on looking for something else. I guess that's what most of us here do, look for different causes/solutions/palliatives until hopefully one day we push the right button. May God (or good luck) help us.

 

[Thissucks..jenn]

My otologist/neurotologist told about 10% of people diagnosed with hydrops secondary hydrops will get low frequency hearing loss. I've been with hydrops via eCog but I've had abr, multiple oae test even highest frequencies and about 2 extensive hearing tests a month since oct 2017 no loss even highest frequencies test. So no permanent damaged my doctor says I have that can be detected on all these tests. I've had more test btw. The regime for is steroid shots in inner ear mine is secondary hydrops due to inflammation. Now 10% is very low number to get loss and permanent damage the best thing is to catch it quick to start treatment right away. Only took 3 months to from the start of my problem to figure out secondary hydrops. I mean I guess if your not aggressive in treatment that it could cause permanent damage. But water pill and steroids help mine last eCog no hydrops in right ear after 5 dexamethasone injections left ear only had 3 dexamethasone injections still positive for hydrops. BTW when the inflammation goes the T goes

 

[Stocktrader86]

Hi Jenn,

How are your steroid injections going? Now, I agree that immediate treatment is important.

1) what is your opinion on doing diuretic and brief course of steroid like prednisone initially? Is it possible this is enough and not doing the steroid injections?
2) the steroid injections are usually step 3 in treatment with betahistine coming next... So, my question is this, do you recommend doing injections sooner? How has your experience been? Seems these work the best also.

 

[Juan]

I know that low or extremely low sodium is not the (only) answer, but you gotta start somewhere. It a matter of balance of sodium, potassium, sugars, electrolytes and who knows what else.

I have read that what really alters the liquid of the inner ear are changes to the levels of salt, sugar etc from one day to the other... I am at a loss after reading that.

Does it mean that even if there is salt / sodium on a diet, it is more important to keep the same pattern day after day, than really being on a super low sodium diet?

 

[FlatDarkEarth]

I have read that what really alters the liquid of the inner ear are changes to the levels of salt, sugar etc from one day to the other... I am at a loss after reading that.

Does it mean that even if there is salt / sodium on a diet, it is more important to keep the same pattern day after day, than really being on a super low sodium diet?

I would very much like to know more about that too. I've heard that consistency is important as well, in addition to the AMOUNT of sodium you intake, yet I have never read this in any medical/academic literature.