Endolymphatic Hydrops? Please Describe Your Tinnitus

[Matchbox]

This is a bit of a long shot but I wanted to know if anyone else has this kind of awful sickening tinnitus and if it is worse or better and when.

My worst tinnitus bar none is making a mid frequency drone in both ears with the left ear being louder Every. Damn. Morning.

It doesn't go away with sleep. In fact it's what wakes me up. It happens like clockwork in the morning. When I get moving around, it still sticks. It doesn't really leave my right ear, just gets quieter. It does leave my left ear but ONLY IF I'M AROUND NOISE FOR A WHILE AND HAVE COFFEE. I get random humming and thumping at night now too.

I find it odd as I mask at night so I have no chance in hell of sleeping, it's so loud and yet it will still be there in the morning.

I feel like this is hydrops related to steroids, or barotrauma that I went through a couple months back.

The last time I had alcohol the droning went absolutely berserk. So far a mild diuretic doesn't help from what I can tell.

Since it's just in the morning when it's worst, can anyone relate? I talked to a girl with a CSF leak and her symptoms were similar on standing during the day which makes sense.

If mine is in the morning, could something be changing throughout the night like a leaking fistula making it "seem" like hydrops or some reaction to cortisol when it is at its highest? I don't think you have low CSF lying down... I think it's highest then.

 

[__nico__]

My god this whole post could have been written by me.

 

[Matchbox]

My god this whole post could have been written by me.

Well, so far I've had a hard time figuring out what makes the droning go away. I'm at my wits' end. It could be literally anything. The droning though just sounds like hydrops, I'm not collapsing to the ground or anything Meniere'sy.

 

[__nico__]

Well, so far I've had a hard time figuring out what makes the droning go away. I'm at my wits' end. It could be literally anything. The droning though just sounds like hydrops, I'm not collapsing to the ground or anything Meniere'sy.

I tried experimenting with sleeping with an elevated head position and it might help extremely marginally. Give that a try.

I'm going to a cancer hospital in 2 weeks, even if I don't have an adrenal tumor they will likely figure out my ear problems, it's an international hospital.

 

[__nico__]

@Matchbox, I'm getting Moduretic in 2 weeks. Will report back.

 

[Brian Newman]

I'm going to a cancer hospital in 2 weeks, even if I don't have an adrenal tumor they will likely figure out my ear problems, it's an international hospital.

How did your visit go? You went to the hospital?

 

[Matchbox]

So far I've been increasing my dose of Betahistine and trialing Lasix.

The thumping is definitely getting a bit better.

 

[__nico__]

How did your visit go? You went to the hospital?

No. I'm going on March 17 and I'll probably be there indefinitely.

 

[Matchbox]

If you have time, I certainly learned a lot... and this could easily apply to humans (mammal) cochlea.

Pretty new paper I read, didn't realize they made a YouTube video.

 

[__nico__]

I have noticed over extensive self experimentation that any type of red wine or blackberry wine will basically cure me 100% of my distortions, vertigo, noxacusis, even many tinnitus tones for a few hours outside the initial drunken-ness.

It does not happen with any other type of alcohol.

Basically the deep insides of my ear will intensely burn about an hour after drinking and then things will become "normal". Not in the sense I'm too drunk to care. In the sense I can hear bass, footsteps, absolutely no distortions etc. It takes quite a few hours for things to slowly get back to normal.

I wonder what this means. Red wine is an extremely powerful vasodilator and I did not originally know that, so this might indicate a good trial for Betahistine/diuretics I suppose.

 

[Matchbox]

I have noticed over extensive self experimentation that any type of red wine or blackberry wine will basically cure me 100% of my distortions, vertigo, noxacusis, even many tinnitus tones for a few hours outside the initial drunken-ness.

It does not happen with any other type of alcohol.

Basically the deep insides of my ear will intensely burn about an hour after drinking and then things will become "normal". Not in the sense I'm too drunk to care. In the sense I can hear bass, footsteps, absolutely no distortions etc. It takes quite a few hours for things to slowly get back to normal.

I wonder what this means. Red wine is an extremely powerful vasodilator and I did not originally know that, so this might indicate a good trial for Betahistine/diuretics I suppose.

To be honest I think Ginkgo biloba, Pentoxifylline, or straight up Niacin (not the no flush crap) would be better. Betahistine is a histamine agonist... but it doesn't mean it will do a whole lot of vasodilation (sure some).

Very cool point about that, red wine has a lot going on chemical wise other than alcohol, with some potent antioxidants... I'll have to give that a go.

How'd your March medical stuff get on?

 

[__nico__]

To be honest I think Ginkgo biloba, Pentoxifylline, or straight up Niacin (not the no flush crap) would be better. Betahistine is a histamine agonist... but it doesn't mean it will do a whole lot of vasodilation (sure some).

Very cool point about that, red wine has a lot going on chemical wise other than alcohol, with some potent antioxidants... I'll have to give that a go.

How'd your March medical stuff get on?

Just did it again. A few glasses of red wine, also took Krill oil, Curcumin, Astaxanthin (a lot), Alpha-Lipoic Acid and L-Cartinine. Basically cured 100%. And I mean 100%, for hours. So... wtf?

I listened to my favorite album of all time. First time in almost 5 months listening to it. Put on another one after it, the hearing loss and distortions and pain slowly came back.

So... I was able.to hear frequencies for a few hours again I was basically deaf in before. Hearing loss is supposed to be forever... what does this mean?

 

[Backpacker]

I have noticed over extensive self experimentation that any type of red wine or blackberry wine will basically cure me 100% of my distortions, vertigo, noxacusis, even many tinnitus tones for a few hours outside the initial drunken-ness.

It does not happen with any other type of alcohol.

Basically the deep insides of my ear will intensely burn about an hour after drinking and then things will become "normal". Not in the sense I'm too drunk to care. In the sense I can hear bass, footsteps, absolutely no distortions etc. It takes quite a few hours for things to slowly get back to normal.

I wonder what this means. Red wine is an extremely powerful vasodilator and I did not originally know that, so this might indicate a good trial for Betahistine/diuretics I suppose.

Just reminding you Dandelion root tea is one of the best herbal diuretics.

 

[Matchbox]

Just did it again. A few glasses of red wine, also took Krill oil, Curcumin, Astaxanthin (a lot), Alpha-Lipoic Acid and L-Cartinine. Basically cured 100%. And I mean 100%, for hours. So... wtf?

I listened to my favorite album of all time. First time in almost 5 months listening to it. Put on another one after it, the hearing loss and distortions and pain slowly came back.

So... I was able.to hear frequencies for a few hours again I was basically deaf in before. Hearing loss is supposed to be forever... what does this mean?

It means that combination of phytochemicals and alcohol is allowing your inhibitory to excitatory nerve paths to rebalance. This happens to me too on Zopiclone, tinnitus goes down and I literally "hear" better, can feel fullness dissipate.

I even do better on hearing test apps by about 5 dB routinely on it. It blew my mind the first time because "if the signal is turned down, doesn't that mean I should hear worse?"

Part of me thinks tinnitus is noise in the auditory bandwidth, which makes it harder to hear in part because we are "getting" noise in the real signal, taking up the precious bandwidth if there's nerve damage. Same reasoning as to why we get distortions when things hit a certain volume level or with broad noise.

Happy for you that you found something that works. I'd be looking up everything in red wine to find out other than alcohol if there's any tannins or compounds which might be helping. Purely antioxidants seems interesting if that's the reason why (and really out there, I can't even fathom as to why it would help "permanent" damage).

 

[Lukee]

Has anyone reached out to Dr. La Torre? I've only seen one old post about him and most of the posters were skeptical but I believe that he might actually be the real deal for hydrops. He has supposedly cured 100s or 1000s of people. On his YouTube channel he has a bunch of testimonials as well. His initial consult is free and if he doesn't think his method will work he doesn't move ahead. I guess €150 is a pretty good deal if he can cure you.

Just did it again. A few glasses of red wine, also took Krill oil, Curcumin, Astaxanthin (a lot), Alpha-Lipoic Acid and L-Cartinine. Basically cured 100%. And I mean 100%, for hours. So... wtf?

In regards to Nico's success: if you are getting good results with blood thinners and vasodilators, I agree with @Matchbox that maybe some Niacin could help. The weirdest thing happens if I take niacin, I can literally equalize my ears with Valsalva using almost no pressure at all. It's like all of a sudden my ears open up. It's a temporary effect for an hour or so while getting a flush but obviously something is happening to relieve the fullness in my ears. Also, if increased blood flow is the thing helping you, have a look at Vasobral. I am thinking to trial it myself but I am guessing it might help you as well by increasing blood flow to the ears.

@Matchbox, have you ever tried DSMO + Magnesium for TTTS? I guess it's pretty good safety profile and might calm down the low hum. I guess two weeks of it couldn't really hurt? I think I'm going to try it out soon, I have the ingredients, hoping it will help ETD symptoms I have, just waiting to trial some inhaled Glutathione first for otitis media and see if that helps first.

 

[FGG]

Just did it again. A few glasses of red wine, also took Krill oil, Curcumin, Astaxanthin (a lot), Alpha-Lipoic Acid and L-Cartinine. Basically cured 100%. And I mean 100%, for hours. So... wtf?

I listened to my favorite album of all time. First time in almost 5 months listening to it. Put on another one after it, the hearing loss and distortions and pain slowly came back.

So... I was able.to hear frequencies for a few hours again I was basically deaf in before. Hearing loss is supposed to be forever... what does this mean?

One possibility is you may have a Stria Vascularis issue imo. Both Cisplatin and Azithromycin are toxic to the stria. My hearing distortions are somewhat similar to yours so I'm actually going to look for some wine myself and see what happens.

 

[Lukee]

Just did it again. A few glasses of red wine, also took Krill oil, Curcumin, Astaxanthin (a lot), Alpha-Lipoic Acid and L-Cartinine. Basically cured 100%. And I mean 100%, for hours. So... wtf?

I listened to my favorite album of all time. First time in almost 5 months listening to it. Put on another one after it, the hearing loss and distortions and pain slowly came back.

So... I was able.to hear frequencies for a few hours again I was basically deaf in before. Hearing loss is supposed to be forever... what does this mean?

Have you tried Resveratrol? It's derived form red wine and is a powerful antioxidant. Maybe try a high dose of a quality brand and see if that helps at all. You are narrowing down your issue and I believe you will find a treatment. Otherwise, stay drunk on wine!

 

[__nico__]

One possibility is you may have a Stria Vascularis issue imo. Both Cisplatin and Azithromycin are toxic to the stria. My hearing distortions are somewhat similar to yours so I'm actually going to look for some wine myself and see what happens.

Yeah I've been thinking this is a Stria Vascularis issue. Or viral. Still sucks that despite receiving the Cisplatin in 2003, other than the initial ototoxicity, I haven't had huge random chunks of hearing loss until December 2020 when I joined this site.

 

[__nico__]

Damn. I tried a Pinot noir and it made me temporarily worse.

But a blackberry wine? Literally an immediate cure. Why.

 

[Lukee]

Damn. I tried a pinot noir and it made me temporarily worse.

But a blackberry wine? Literally an immediate cure. Why.

@Dirtworks ironically had a similar experience to you with cheap red wine.

 

[prowlinacage]

Damn. I tried a Pinot noir and it made me temporarily worse.

But a blackberry wine? Literally an immediate cure. Why.

Pinot noir tends to be a lighter wine with regard to phenols. Resveratrol is a type of phenolic compound. Maybe try a "heavier," more tannic red such as a Cabernet Sauvignon.

 

[__nico__]

@Dirtworks ironically had a similar experience to you with cheap red wine.

I think of @Jason C who had debilitating sound distortions for a year but he drank red wine a lot and I'm certainly sure it has something to do with his recovery. Same with another user on here.

 

[Matchbox]

There are so many differences it's hard to track, and not enough studies.

Wine is a mess of compounds similar to weed and coffee.

If hard alcohol doesn't help you, it's likely something to do with the phytochemicals in wine. Similar to blueberries.

You may also be getting a higher concentration of them in a wine.

I know Quercetin is something not looked at a lot, but blackberries have only a little... especially compared to capers (almost 200 times more than blackberries).

 

[prowlinacage]

Well, great. Now I want a glass of wine!

 

[Matchbox]

As far as the hydrops questions, does anyone have wavering that kinda sounds like this in the morning? Check out the attachment "morning 0421.wav"

I tried to recreate as best as I can. At about 55-100% volume that's what I hear, obviously on loop I used to wake up to silence. Now this. All the time, but in the morning this volume is sometimes 100%. I tried to mix it appropriately for listening around 75%.

Ironically I have no ringing in the morning. Just this, and the "intermittent" sounds in the track are some of my distortion which are in everything.

 

[DebInAustralia]

To be honest I think Ginkgo biloba, Pentoxifylline, or straight up Niacin (not the no flush crap) would be better. Betahistine is a histamine agonist... but it doesn't mean it will do a whole lot of vasodilation (sure some).

Very cool point about that, red wine has a lot going on chemical wise other than alcohol, with some potent antioxidants... I'll have to give that a go.

How'd your March medical stuff get on?

Consider low dose naltrexone?@Samantha R might share with you how effective LDN has been for her.

How about the John from Ohio protocol?

 

[Lukee]

Check out the attachment "morning 0421.wav"

Sorry you have this. It sounds like a scene from a chaotic battleship.

If hard alcohol doesn't help you, it's likely something to do with the phytochemicals in wine. Similar to blueberries.

I read a post where someone was having constant headaches. I also read a post where someone was complaining of head pressure and ear pressure. The same treatment was recommended for both ailments by different people. It was a diet to clear your 3rd eye chakra. Upon researching what that meant, it's a 10 day (IIRC) diet that is comprised of all blue fruits and veggies.

"Purple grapes, purple kale, blueberries, purple cabbage, eggplant, and purple carrots. Also include cacao, which is rich in flavonoids and boosts serotonin, which helps to relieve stress and inflammation." Taken from this site.

I just find it interesting that blueberries (and cacao) are being touted as a treatment from such an old form of medicine. Maybe there is something to the antioxidants that could help __nico__ and several others. Could a 10 day fast eating only these types of anti-inflammatory foods possibly help some forms of inner/middle ear inflammation?

Consider low dose naltrexone?@Samantha R might share with you how effective LDN has been for her.

I also keep going back to this. LDN has miraculous anti-inflammatory properties as well as the other neuro mechanisms we don't quite understand yet. The other thing I'm extremely curious about is Vasobral. Maybe the increased blood flow to the ear can help the healing, I don't know exactly how it's working but seems to work for some. I did notice that when I take Niacin, I can basically equalize my ears by Valsalva by using the slightest pressure ever. It's like my ears open up but I can't really explain the feeling.

 

[Matchbox]

Damn. I tried a Pinot noir and it made me temporarily worse.

But a blackberry wine? Literally an immediate cure. Why.

Giving your way a shot tonight, wish me luck.

 

[Matchbox]

Blackberry wine didn't work for me.

 

[__nico__]

Now alcohol makes me temporarily much worse off than better for a few hours, then back to baseline. Then whenever I take a hot bath, I am like 100% cured of all ear problems in sauna heat conditions, and then am much worse off with much lower frequency tinnitus and dysacusis for the next few hours back in room temperature.

This has to be hydrops, nothing else makes sense to me.