Anyone Suffering from Cochlear Hydrops?

Anyone suffering from Cochlear Hydrops?

I would love to hear some insight about how you guys handle it and what you guys can do to improve it.

I was diagnosed with Cochlear Hydrops and have started a low sodium diet.
I've been doing a low sodium diet for almost a month with no results unfortunately. I have both tinnitus & hyperacusis.

 

@brownbear do you have cochlear hydrops?

 

@Hex,
As you know I have Meniere's and the meds can help Hydrops also.

Ask your doctor about-
Betahistine
Buccastem
Proclorperazine
Cinnarazine
Diuretics

love glynis x

 

Thank you Glynis

Do you feel a lot of pressure on your forehead area? Sort of like a headache?

 

@Hex ,
Mine is more in my ears.
Pressure in the forehead could be a sinus issue or migraine.
love glynis

 

Yeah, I have pressure in my ears as well.

Do you ever get random pain in your ears? I sometimes get this stabbing/pulling pain inside of my ears. It can be random as well for example whenever I'm not doing anything but sitting/laying down I'll get it.

I really need to get rid of the mold inside my house. I wake up with a blocked nose everyday!

 

@Hex ,
Pressure pain happens a lot.
The mould could be causing you allergy symptoms including a sinus issue.
While your a sleep you can get post nasil drip so mucus goes down the back of your nose and throat and in your eustation tubes and can cause tinnitus and you might notice this by a snotty taste in your mouth when wake up.
love glynis

 

Yeah, definitely. I have had a blocked nose for years and I never knew what post nasal drip was until 3 weeks ago. Is there any way to fix post nasal drip? I assume getting rid of the allergies first, right?

I also tend to breathe through my mouth because my nose is always blocked. I need to buy an air filter asap.

 

Antihistamines and a nasil spray should help.
love glynis

 

Thanks Glynis,

I'll try and use natural Antihistamines

Is there anything else I should try avoiding or do? Other than chocolate, alcohol, caffeine. I'm doing a low sodium diet as well.

 

I have cochlear hydrops for over a year now.

Do any of you guys use the supplement Lipo Flavonoid Plus?

https://www.amazon.com/Lipo-Flavonoid-Supplement-Effective-Recommended-Packaging/dp/B018J1LOSI/ref=sr_1_3_a_it?ie=UTF8&qid=1541126593&sr=8-3&keywords=lipo+flavonoid&dpID=51ixQvmBNQL&preST=_SY300_QL70_&dpSrc=srch&th=1

I never use any supplements and always have said any supplement is useless and a waste of money. My doctor recommended them and I was skeptical but when searching the amazon reviews I found many reviews say they only seem to work for people with cochlear hydrops or Meniere disease.

I started to use them and to my amazement they helped so much. You will need to keep a strict diet but those supplements really helped to reduce the symptoms. Before the supplement and on a strict diet my hearing would cycle from good to bad. Usually it was good for a week, then bad for 2 weeks, then good again, then the cycle would repeat.

After using the Lipo Flavonid, and staying on a strict diet, my hearing stayed good and never got bad again. If I really just pigged out on junk food it would get a little bad on the supplement but not nearly as bad if I didn't take the supplement.

After many months of my hearing being good, I thought maybe I didn't need the supplement anymore. I stopped taking them for a week. To my surprise about a week after I stopped taking them my hearing got bad again, so I started to use them again and now my hearing is good.

I don't take the recommended 3 pills a day, I don't want any side effects or health risks from taking a supplement. I found that using just half a pill a day is enough to keep my cochlear hydrops symptoms down. They tell you to reduce the pills after a month or so.

Maybe you guys here are using this but if not I would definitely give it a try for at least a month. Just search the amazon reviews in the link for "hydrops" or "Meniere" and you can read the reviews from people who have this disease and most had good results. I did even though I am a big skeptic on people saying to try supplements.

Just use the dosage you need as they recommend a whopping 6 pills a day to start and 3 pills after it gets into your system. I would start with maybe 2 a day, then fall back to 1 a day, cutting the pill and taking it two times a day. You don't want to find out 10 years down the road that you have cancer from taking them. I take just a half a pill a day.

 

Another thing I discovered is you will be surprised what foods cause issues. I found tomatoes cause my cochlear hydrops symptoms to get really bad. Who would ever think tomatoes would do this?

This is why you have to really be careful with what you eat and make sure that you are not eating something everyday that could cause you issues and not realize it because you think its low in salt so it should be fine.

I think eating lots of candy or sugar makes my cochlear hydrops worse.

 

@iDred

Thanks for the information. I finished the product you mentioned about a month ago and I don't know if it helped or not honestly.

since I stopped the product I still feel the same. I was on a very strict eating diet where I was only eating beef and veggies. No carbs, no salt, no sugar and after a month of doing that I felt good for about two days where the volume decreased but then it went back to baseline. It's hard to tell if the diet did anything but not eating enough salt daily can result in further unwanted damage.

Can you describe to me the symptoms you have?

I have T & H in both ears

 

I woke up one morning and I noticed my noise machine sounded odd. It then felt like my ear was full or water in my left ear. In the beginning it was the worst.

My hearing was really distorted in my left ear, my right ear was normal. High frequency was fine but I lost a bit of low frequency.

I lost a substantial amount of hearing from 1000hz and below, anything below 300 hz was really lost. The other issue is my right and left ear heard things differently which would cause a kind of echo, I believe this was Diplacusis, basically if I pick up the phone and press the digits, they sound a bit different in each ear.

The fullness in the ear was really annoying, I also had a hissing sound in the bad ear and a bit of a ring, but the ring wasn't too loud.

This was really my worst nightmare as I was always protective of my hearing. I always wore ear plugs at clubs, avoided head phones, or playing music too loud. My hearing used to be perfect.

With time my hearing did get surprisingly better, even though I was told the hearing cells were permanently damaged.

After a few months the fullness or water feeling in the ear went away. The echo or hearing distortion went away.
To my amazement, my low frequency hearing came back almost 90% of it. I can now hear very similar in both ears down to about 100hz. Below 100hz it is improved but not as good as my good ear.

It got so good that right now I would not know I had a hearing issue. Mens voices sound normal in my bad ear, and if someone talks on the side of my bad ear they sound normal. The very low frequency loss I have not is not perceptible unless I put on headphones and carefully listen to the frequency response like in this video.

Hearing Test HD

In the beginning my ear was really bad, so bad I didn't even want to listen to music in my car because it sounded so distorted. I couldn't understand people if they sat on my left side because of my bad ear. Voices would sometimes sound abnormal and scary as my brain heard different sounds and didn't play them back properly to me.

I am so thankful my hearing got better because I did read once those hearing cells are damaged they are damaged permanently. I have no idea why my hearing came back so well. While it isn't perfect as my good ear, I can tell I lost frequency response now about 80hz and lower, basically I can hear it but it sounds lower than in my good ear.

Some odd things.

My hearing would cycle from good to bad, good to bad... until I started taking the Lipo Flavanoid then it mostly stayed good.

After about a week of first experiencing problems I woke up with a really loud tinnitus, extremely loud. The odd thing was that with the loud tinnitus came with much better and clearer hearing. Lucky this went away in a day and my hearing improved greatly.

To be honest, even though the Tinnitus was horrible I actually didn't mind the clearer hearing and almost didn't mind having the screaming tinnitus if I had clear hearing. Now I don't get the tinnitus and my hearing has stayed clear.

My hearing will still get a little bad from time to time, so my hearing does still cycle. But when it gets bad its not really bad at all. I will sometimes feel a slight bit of water or fullness in the ear and my low frequency will get worse.

Right now my hearing is slightly worse because of Halloween candy. It seems like sugar candy like smarties or jolly ranchers affect me. Because my hearing has improved so much and doesn't get so bad now, I do eat more junk which may make my hearing slightly worse but it really is not a big deal as its hardly noticeable.

I normally don't have tinnitus now but when my hearing gets worse my tinnitus comes back a little.

The best thing I did for my hearing or when it stayed the best without issues was when I was on an extra low calorie strict diet. Limiting your food intake and not pumping your body with so much crap may be the best thing. Pigging out at family events always makes my hearing worse.

I guess I'm extremely lucky considering how bad my hearing was, but who knows if things will get worse for me. I'm only 39 years old so I'm hoping for the best.

My recommendation would be to definitely make sure your diet is not making things worse by changing things up and eliminating things.

One tip I read from someone on the internet was that eating the same exact foods every day is more important than what you eat. It seems your body may stabilize on the same diet but when you keep changing your diet up it messes with your system. I tend to always eat the same exact foods every day and I notice when I start changing things up is when I have issues.

 

I was thinking, are you sure you even have Cochlear hydrops? Did you only get low frequency loss?

Did this happen to both ears at the same time or one ear?

 

During the later days of this past June I had some hearing loss in my left ear out of no where and I just slept it off. The next day I woke up with the loud seashell/roaring sound in my left ear. I heard it over everything. Nothing could mask it. That lasted for about 12 days. It was complete hell. Within the third or fourth day I developed hyperacusis in both ears. At that time I had lost about 40% of my hearing on my left ear.

I couldn't hear people well on my left ear, sounds were distorted, when I pressed a key on a phone I heard different tones in each ear. I have had ear fullness for months and I probably still do but I've gotten so used to it that I probably don't notice it anymore.

When I'm in a silent room I can obviously hear my T but I also hear this other sound as if when you return from a concert and your ears are sore and "buzzing" from the loud ambient sound. I think it's from this car alarm that went off on me 2 months ago when I didn't have my ear plugs on. Well, I'm sure it's from that because I developed it after that. My hearing was good after the loud roaring sound went away but this car alarm damaged my hearing since my left ear is worse than my right ear at hearing stuff and in the audio exams I've taken.

The loud roaring sound went away within 12-14 days but within a week after I developed this high pitch ringing sound in both ears and hasn't gone away since.

Two ENT diagnosed me with Cochlear Hydrops and I've been keeping a Keto diet but I broke it since I didn't really see that much improvement within a month. I was literally eating beef and veggies every day.

Wait, did your T go away for a bit? So, are you able to hear silence some times?

 

It does sound like cochlear hydrops.

I also had slight sensitivity to sound but that wasn't bad. I did have the hearing different tones and the sound being distorted because of that. Yes the dial tone is a very good way to test this.

Since my low frequency is damaged, the dial tone, and digits 6 , 7 , 8 , 9, 0 are the worst and sound different between both ears.

Since my hearing got better, probably 95% better, all the digits on the phone sound the same in both ears except the low frequency dial tone which sounds a bit different. With that being said my hearing is normal right now. I can hear totally fine and considering how bad my hearing was when I first got the cochlear hydrops, it is like a miracle.

Sometimes my hearing just gets worse, and some digits on the phone will sound off but not enough to cause my hearing to be distorted. When this happens I feel fullness or like water and pressure in my bad ear. The tinnitus will come back a bit during this time.

I did have fullness in the ear in the beginning really bad. This was quite annoying. I remember saying that I can live with the distorted hearing but wish I didn't have this fullness in my ear that felt like there was water stuck in the ear. This fullness went away 100% with time.

I didn't really have too bad tinnitus, more like a slight hissing sound. When the ear has fullness I get a bit of ringing tinnitus, but not very bad. The tinnitus keeps changing from slight ring, to hissing sound.

Right now my hearing is good and my tinnitus is gone. I believe I always had a very minor ring if I was in a very quiet room and listened for it, I still have that, but it is not perceptible 99% of the day. My good ear has a very minor ring if I listed for it in extreme quiet. Right now I can't even hear any tinnitus.

The odd thing is I did get extremely bad ringing tinnitus a few times, around this time my hearing actually cleared up. This only lasted a few hours and after that the ringing went away and my hearing was much better. Usually this loud ringing for me was right before my hearing cleared up and signals that my bad cycle is over.

I will say that with loud noises I had an odd thing happen. I had ear buds on and the game I was playing all of a sudden distorted ultra loud noise right into my ears. It was very loud. The oddest thing happened is that during this time my hearing was bad or distorted as I was going through a bad cycle. That loud noise did something to my hearing in that my hearing cleared up within 20 minutes and became good again.

Don't get me wrong with anything I wrote here, my hearing was very bad in the beginning. If somebody sat on my left hand side I could not understand them. All the sounds were distorted, echoed, just sounded weird. My hearing just improved and got back to mostly normal with time.

You never mentioned, you said you had hearing loss. Did this affect only your low frequency or everything? The reason I ask is because my hearing loss was only the low frequency say 500hz and lower, while my high frequency was still perfect.

If you had lost both high frequency and low frequency you may not have the typical case of hydrops which is usually just low frequency loss. This may be why you are not responding to the Lipo Flavonoid plus and diet changes.

 

@iDred

Thanks for your reply. I like reading what you have to say.

Did you try different diets?
I know you mentioned that you're on a strict calorie diet.
I am opened to trying new diet until something works.

I'm going to give Lipo Flavonoid another chance. I'm going to purchase the 100 capsule if they have one. I believe I used to take 3 a day or whatever the packaging said for first time users.

Yeah, for those 12-14 days of hell I heard everything from my left ear distorted. I never got a hearing test done within that time frame but I don't recall if it was just low frequency. I was just in an anxious state of mind every single minute of the day.

Thank God I don't have that same sound anymore. I was suicidal. On a scale of loudness it was 10/10
The ringing I have now is around a 4/10. It's really loud when I have ear plugs in. The hyperacusis is what bothers me the most. It's so easy to get set back it feels as if I'm never going to heal from it. I'm typing in my room with a fan on and the keyboard clicking is irritating my ears.

 

Hex regarding diet, I don't eat too much variety in foods but this is what I discovered.

It seems eating certain foods will cause issues about a day later, obviously as it has to get into your system.

1) Tomatoes seemed to cause me constant issues when eating it daily.
2) Chocolate or candy seems to cause me issues, or eating any junk foods.
3) eating at a restaurant, like a steak dinner, causes me issues. not sure if its the high sodium or something else.
4) I did question if chicken cutlets caused me issues and I stopped it.

There are many things that may cause me issue and what I found to not cause issues is:

1) Eat a calorie restricted diet, the less I eat of everything seems to give best results.
2) Eat the same foods everyday in the same quantities.
3) eat all basic non-processed foods.

What I eat every single day and this tends not to cause me any issues if this is all I eat:

quinoa
Whole wheat pasta or pasta made from brown rice,
frozen Corn
frozen Peas
1/3 can of canned beans, rinsed with water to remove salt
Large salads with romaine and lots of broccoli, vinegar and Italian dressing but not too much
Peanut butter, slice of whole wheat bread,
I eat many mixed unsalted nuts.
lots of Popcorn, but cooked fresh or mixed with some skinny pop popcorn organic for some flavor
Different fruit, (not tomatoes), but grapes, peaches, melons, apple,
Glass of orange/grape juice.

If I eat the above same foods every day and don't eat any candy or junk food or restaurant food I won't have any issues if I take a half pill of Lipo Flavonoid plus taken during meals. I cut out meats, I know you mentioned you eat beef and I think you should eat carbohydrates and cut out meats. Meats may cause all sorts of things in your body.

I read the reason they think foods cause issues is that if you have cochlear hydrops your fluid in your eat is not maintained independent of your body, but when you have cochlear hydrops your ear fluid is now mixed with your body fluid and what you eat will get into your ear. Each person may be different but more vegan foods are probably best. Animal foods like meats are known to cause anyone system to acidify or something like that and wreck havoc in your system. I cut out most meats/dairy. I drink maybe a glass a day of milk at most.

You should try a calorie restricted diet similar to the one I mentioned above cutting out many foods and changing most of the foods you currently eat to see if it has any affect for at least a month. If it doesn't then I probably wouldn't waste my time if diet changes seemed to not have any effect.

You would have to be strict, even eating a tomato a day would cause me constant issues, or eating tomato sauce with pasta. Maybe eating beef every night is causing you not to get better. If you are eating something daily and you think it is healthy or OK it may be causing you constant problems (like a glass of wine a day) that is why I say to change up everything you are eating, switch to a completely new diet and limit your food intake.

 

I just had a restaurant 8 oz steak dinner last night and wholly crap my ear is ringing so loud and my ear also seems more sensitive to sound. It is probably the salt but not the beef but who knows, but you should consider cutting all beef from your diet.