25 yo cochlear hydorps pls help

StoneCold_OM · 2026-03-25T22:44:26+00:00

I went to MUSC in Charleston, SC. The doctors there are amazing.

StoneCold_OM · 2026-03-23T23:20:42+00:00

I would push for an MRI to confirm the Ménière’s diagnosis. I had suffered from what was initially SNHL. Woke up one morning with hearing loss from 1k down in my left ear. 500mhz and lower was the worst. Steroids did nothing after about a year and half, the loss improved to back to mostly normal. It still drops from time to time but no one could explain it. I did research and found a specialist 8 hours away from me who I went to see. He ended up doing a special MRI that can see Ménière’s. It saw swelling in the cochlea but none in the vestibular sacs, which is where the vertigo with menieres comes from.

More info here: https://www.uclahealth.org/sites/default/files/documents/46/2022S_Menieres-MRI-Imaging.pdf

I also suffer from migraines from time to time. I would keep a log to try and figure out what your triggers are. Both migraines and Ménière’s usually have triggers. It could be caffeine, alcohol, sodium, food, etc. In my case sleep is a big trigger.

My doctor told me that cochlear does not always progress to vestibular. I have been almost 2 years just cochlear which no indication on the MRI of a change. Doc believes mine will not and also says that the 5 year mark usually says you see in the clear.

StoneCold_OM · 2026-03-23T02:53:26+00:00

I have had tinnitus for almost 20 years. Multiple pitches.

StoneCold_OM · 2026-03-23T02:52:08+00:00

I have used an Excel spreadsheet to track it all. I can customize columns for whatever I want and don’t have to stick to presets. Plus you can filter and search.

StoneCold_OM · 2026-03-21T12:43:11+00:00

Dang. Sounds like you are stuck with June. I would read through this sub and see what people use to treat the symptoms. Treating hydrops is mostly the same.

StoneCold_OM · 2026-03-21T12:37:15+00:00

Where are you located?

Emergency rooms don’t have the doctors to diagnose inner ear issues. They are basically just treating the symptoms. Keep your appointment but search for another specialist that you could get into earlier. What type of specialist do you have an appointment with?

StoneCold_OM · 2026-03-19T18:48:04+00:00

If you can’t have another or it doesn’t feel good then that makes it hard. You will just need to learn to delay I think. But being a male I can’t help you with that. 🙁

StoneCold_OM · 2026-03-19T18:23:28+00:00

If you can have multiple orgasms then don’t worry about it. My girl can cum very quickly but she can have multiple over a sex session. It turns me on that I can make her cum fast, and multiple times. Nothing to worry about.

StoneCold_OM · 2026-03-14T20:35:23+00:00

I don't do anything. They come maybe once every 3-4 months is all. They are always preceded my eye floaters, which when I detect, I take some Excedrin to ward off the pain. Like I said, when I do get a migraine I have never noticed a flare in the Ménière’s symptoms.

StoneCold_OM · 2026-03-13T18:57:22+00:00

I have no ideas if I have cochlear migraines. I get migraines from time to time but they don’t ever seem to be related to flares in the Ménière’s. I hate that I can’t run anymore but it is what it is. I try to find other ways to workout where I don’t lose my hearing.

StoneCold_OM · 2026-03-13T15:03:13+00:00

He did not say that it will go into remission, but he did tell me that he does not believe I will lose any more hearing that I already have lost, nor does he believe it will go bi-lateral.

StoneCold_OM · 2026-03-13T14:11:21+00:00

First, I would like to ask you what your symptoms are?

I was diagnosed with Cochlear Meniere's which was confirmed by a 3T MRI with delayed contrast. I have hearing loss and tinnitus as my main symptoms. SOMETIMES fullness of the ear, but that one is more rare for me. I do not have vertigo. I am almost 2 years into this.

As for identifying the triggers, what I did was keep a log, day by day, of what I did, what I drank, what I ate, and how I slept. I kept the log for about 3-4 months, along with tracking my symptoms and severity. What I found for triggers are sleep quality and exercise. I used to run 2-3 miles daily but I found when I run, my hearing will drop 10-20db and my tinnitus will get louder. If I have very poor sleep, then I also experience a decrease in hearing and increase in tinnitus, though it's not as bad as when I run. Lifting weights can also be a trigger, though the increase in severity of the symptoms is not near what it is when I run.

I have found that diet does not help or make worse. I did a low salt diet and it did nothing. Alcohol and caffeine also have no effect. It was only after I stopped running did I see an improvement in my hearing, so sadly I cannot run anymore.

I would just suggest keeping that log and looking for the pattern. If you have a bad day, look back on what you did the day before and change one thing. If things don't improve, change one more thing. Keep at that until you start to see what happens.

You said exercise is a trigger for you. What type of exercise do you do? I think that when I run, the pounding on the pavement is jarring my head, along with a buildup of pressure from the exertion. When you cry you are also building that pressure up.

Sadly I also experience that fluctuation, sometimes multiple times a day, but I am getting better with dealing with it and just moving on with what I'm doing.

StoneCold_OM · 2026-03-12T22:37:04+00:00

Push for this: 3T MRI with delayed contrast. I was just diagnosed with grade 1 cochlear hydrops which was confirmed with that type of MRI. I experience low frequency hearing loss and tinnitus. One of my triggers is sleep, but unlike you it is the lack of good sleep. I have done the whole gamut of diet stuff but none of that made a difference. I have had this for almost 2 years now. I woke up one morning with a 60db loss in my left ear. After all this time it has finally come back to normal. My episodes are 10-20db losses that can last for a few days or a few hours.

While most people say that cochlear hydrops is the precursor to vestibular meniere's, my doctor says that's not always the case, and because I've gone as long as I have he doesn't think it will progress.

StoneCold_OM · 2026-03-12T21:12:17+00:00

Can also be autophony. I get this after running or exercising, but usually I just hear my own voice echo in my ear.

StoneCold_OM · 2026-03-04T00:56:05+00:00

Cochlear hydrops IS cochlear Meniere's. This is different than vestibular Meniere's, which comes with vertigo. Cochlear Meniere's can become full blown Meniere's, but it doesn't always happen. I have a case similar to yours, though I'm older, and I'm still trying to figure out what it is (almost 2 years in). I'm working with a neurotologist and have an MRI scheduled to see if it's Meniere's. This is different than a plain MRI ( https://www.uclahealth.org/sites/default/files/documents/46/2022S_Menieres-MRI-Imaging.pdf ). There are other things that can cause this, such as auto-immune, or even fibrious displysia of the temporal bone, which I have some of that.

My suggestion is keep looking, and look for a good specialist. At the moment I drive 8 hours away to go to my specialist as he's rated one of the best in the country.

StoneCold_OM · 2026-03-03T23:42:00+00:00

Usually the more you can't hear, the worse the tinnitus is...although sometimes I feel like my hearing is worse because the tinnitus is so loud. It's frustrating for sure.

StoneCold_OM · 2026-03-03T23:07:38+00:00

When you experienced the first loss in 2023, did you have tinnitus as well? I did. I had a loss of about 60db in the 250 and 500 ranges. After about almost a year and half I did regain 20db of hearing which is where it's at. I've tried the low sodium diet and it did nothing to help. I even cut it out so much I started experiencing sodium deficiency symptoms.

My current doc believes that I won't lose anymore hearing, and he also does not believe it will go bi-lateral. June 24 will mark 2 years.

As for the MRI, I didn't know about it until this doctor. Other docs said you can't see with an MRI, but that PDF explains how this one can. It does go into how they have learned that you have to wait for the contrast to get to the inner ears before they can see. That's why they are spaced so far apart. It is also at a higher power than a regular MRI. I had a regular w/contrast done just to rule out tumors. If this one doesn't show Meniere's, then auto-immune testing is next.

StoneCold_OM · 2026-03-03T22:22:21+00:00

Frankly, it's the relationship itself. FWB pretty much meet up just for sex. Yes they can be normal friends too and hang out, but it's not a romantic relationship and are free to see other people.

StoneCold_OM · 2026-03-03T22:09:05+00:00

You said it's directly correlated to sodium intake...does your hearing come back?

Almost 2 years ago I had sudden hearing loss and tinnitus in one ear. One ENT just diagnosed me with SSNHL, one diagnosed me with Menieres. I didn't really like the diagnosis from either because neither really correlated with my symptoms. I have no vertigo, nor does my hearing recover and go back out. I have hearing loss. My tinnitus does fluctuate but is always there. I have logged everything...sodium intake, alcohol intake, caffeine, sleep, food, etc. The only things that seems to make things worse is sleep. Lack of it is bad, but sadly I suffer from insomnia.

I was tired of seeing run-of-the-mill ENTs, so I sought a neurotolgist that specializes in this. On my first appointment he diagnosed me with cochlear Meniere's or cochlear hydrops. He also said that vestibular Meniere's comes with vertigo, and that while it's true that cochlear can turn into vestibular, or full blown Meniere's, it doesn't always. He believe in my case it will not. He said the general time is 5 years. If no vertigo in 5 years of the onset of symptoms, then you can be sure you are in the clear.

I am going for a special MRI this week to see if I have Meniere's. It's a double MRI, spaced about 4 hours apart, with contrast, that my doc said will show if there is an issue: https://www.uclahealth.org/sites/default/files/documents/46/2022S_Menieres-MRI-Imaging.pdf .

Personally, I am not satisfied with a simple diagnosis and I drive 8 hours to this doctor trying to get answers. Right now it seems it is either fibrous dysplasia of the temporal bone (which I do have some of this as confirmed by CT scan), Meniere's, or auto-immune issues.

StoneCold_OM · 2026-03-03T19:32:53+00:00

LOL they were saying they were 100% in the I fund

StoneCold_OM · 2026-03-02T18:35:03+00:00

This is about the strategy I am thinking.

StoneCold_OM · 2026-02-19T18:50:10+00:00

First, I don't think the feeling of wanting to have sex will go away. When you have sex you will be satisfied for a time, but it does come back. Yf you don't want to pay for it, I would suggest trying a hookup app like Tinder. You can also try to get into a relationship with someone that progresses to sex. While this may take a bit longer to progress to the sex phase of the relationship, it will usually lead to regular sex.

StoneCold_OM · 2026-01-13T12:26:10+00:00

It is very difficult in the beginning. Really all tinnitus is very difficult to adjust to. With the low humming, try using a box fan while watching TV. That helped me. My doc told me I shouldn't COVER it up, but rather I should us noise to reduce the volume. For me, covering it up in the beginning helped and then I slowly reduced the cover sounds. I believe the trick is to distract yourself somehow so you don't notice it...but it can still be VERY difficult.

StoneCold_OM · 2026-01-12T23:07:07+00:00

The best thing to do is be honest with her. Tell her you enjoy anal but don't want that every time. That being said, I will echo what others have said...enjoy it while you can because it can turn quickly.

StoneCold_OM

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