The Hum/Drone/Foghorn/Lightsaber/Washing Machine = Hydrops

[Jkph75]

This probably isn't news for some of you. I finally figured this out after reading endless amounts of posts on various sites coupled with my own symptoms and what little drs have to offer. For some reason, i have it in both because I can feel my ear getting full on my deaf side too.

So for those of us who have it, are we all in the early stages of Meniere's? Can we just assume that we have Meniere's? If not, why can't we get any treatment? Why is this not recognized as a legitimate problem? Is there some Dr on this planet that can actually recognize Hydrops and treat it before we all go deaf and dizzy? How long can this go on for?

It's been a year. I am so sick of their nonsense criteria for this and that. Illnesses don't care about your check boxes.

 

[GregCA]

When I was first (mis) diagnosed, I was told I had hydrops. I was told to follow a diet with reduced salt/caffeine/sugar/alcohol.
It didn't sound like there was any pharmaceutical treatment for it, unfortunately.

What I ended up having is otosclerosis, which isn't any better in terms of treatment: it's a degenerative disease that is going to bring me deafness and increased tinnitus (unless I defy the odds).

The hearing apparatus is unfortunately pretty poorly understood, and as a consequence, we have very few treatments for its conditions.

 

[Jkph75]

When I was first (mis) diagnosed, I was told I had hydrops. I was told to follow a diet with reduced salt/caffeine/sugar/alcohol.
It didn't sound like there was any pharmaceutical treatment for it, unfortunately.

What I ended up having is otosclerosis, which isn't any better in terms of treatment: it's a degenerative disease that is going to bring me deafness and increased tinnitus (unless I defy the odds).

The hearing apparatus is unfortunately pretty poorly understood, and as a consequence, we have very few treatments for its conditions.

Unfortunately, you could have Hydrops too. I haven't been told that it will definitely lead to Meniere's. You are right. They have very little understanding of the ear. What they are passing off as treatments are mainly barbaric.

 

[Aaron123]

@Jkph75
If you haven't seen this page, it might be interesting: http://www.dizziness-and-balance.com/disorders/menieres/delayed_hydrops.html It doesn't discuss these particular types of sounds, but it does discuss Delayed Endolymphatic Hydrops. This appears to frequently if not always have single sided deafness as a symptom. Their attitude is that it is a variant of Meniere's, but it might give you something to explore.

 

[Jkph75]

@Jkph75
If you haven't seen this page, it might be interesting: http://www.dizziness-and-balance.com/disorders/menieres/delayed_hydrops.html It doesn't discuss these particular types of sounds, but it does discuss Delayed Endolymphatic Hydrops. This appears to frequently if not always have single sided deafness as a symptom. Their attitude is that it is a variant of Meniere's, but it might give you something to explore.

Thanks for posting this. This just basically says that if I have Meniere's it's because I already have one ear that isn't working which makes sense. I don't have a fluctuating hearing loss or episodic vertigo so they can't say that I have Meniere's Disease. I clearly have Hydrops. Apparently, this doesn't mean that I will definitely get Meniere's or does it? They can't seem to come up with a better answer. They said they have never seen anyone be symptomatic for so long without developing either symptom. I think that there are lots of people who have Hydrops who probably don't even know it.

 

[Aaron123]

Apparently, this doesn't mean that I will definitely get Meniere's or does it?

My read is that Meniere's implies hydrops but hydrops does not imply Meniere's. There's some information on this on the "recent thought" section of the Meniere's page: http://www.dizziness-and-balance.com/disorders/menieres/menieres.html#causes

They have a lot of interesting pages. This is more for docs, but there is apparently a lot of recent research on MRIs and hydrops: http://www.dizziness-and-balance.com/disorders/menieres/mri-hydrops.html It looks like you would need to find the right doc/facility to get it right.

 

[GregCA]

Unfortunately, you could have Hydrops too.

It's a possibility indeed, but I don't think it's likely. My neurotologist (who did my surgery) doesn't think so, but he could be wrong of course: it's not like there's an easy way to confirm the diagnosis, as it's done by elimination.

When I first was diagnosed with EH, I didn't even have T. They just got to that diagnosis because nothing else fit.

Now that they know what's happening to me, they can explain all the symptoms. That doesn't mean that there couldn't be something else going on (it is possible to have 2 rare issues together and have onsets that coincide), but it's not likely in terms of pure statistics.

 

[Jkph75]

It's a possibility indeed, but I don't think it's likely. My neurotologist (who did my surgery) doesn't think so, but he could be wrong of course: it's not like there's an easy way to confirm the diagnosis, as it's done by elimination.

When I first was diagnosed with EH, I didn't even have T. They just got to that diagnosis because nothing else fit.

Now that they know what's happening to me, they can explain all the symptoms. That doesn't mean that there couldn't be something else going on (it is possible to have 2 rare issues together and have onsets that coincide), but it's not likely in terms of pure statistics.

It isn't really that rare for someone with Otosclerosis to develop Meniere's Disease later. I read up on it when I thought I might have Otosclerosis. To me the odds of something occurring to one person don't really mean much. The odds of being born deaf in one ear are really low. The odds of having Meniere's even with being born deaf in one ear are still low. They are even lower considering I never had any problems with my ears until now. That doesn't mean that I'm not going to get it and that this isn't the beginning of it.

That being said, I don't think that you have Meniere's. My point is that I think all of us with this rumbling low foghorn thing have Hydrops. I think it occurs a lot more than is believed at this point. I would just like to see Hydrops be recognized and treated for what it is. It's not Meniere's and it's not just tinnitus. However, these are just my thoughts. My degree isn't in medicine. What do you think?

 

[GregCA]

It isn't really that rare for someone with Otosclerosis to develop Meniere's Disease later. I read up on it when I thought I might have Otosclerosis. To me the odds of something occurring to one person don't really mean much. The odds of being born deaf in one ear are really low. The odds of having Meniere's even with being born deaf in one ear are still low. They are even lower considering I never had any problems with my ears until now. That doesn't mean that I'm not going to get it and that this isn't the beginning of it.

Well certainly we could argue on how we interpret statistics, but I'm not sure it would be very productive. I do agree that it's possible to have 2 rare conditions, especially because there could be statistical correlation between both of them, but saying that something extremely rare is possible is different from saying that it's likely.

There is a natural bias in us that increases our pessimism because we've already been hit by "bad luck". In this very forum you can find claims that "if this bad thing happened to me, I'm sure I'll also get this other bad thing".
I fell for it myself when I went ahead with my surgery. There was a 1% chance of complete deafness as outcome, and I thought to myself: "well I already have a condition that fewer than 1% of people have, so yeah knowing my luck I'll probably get this too".

I personally don't want to start worrying about things that have a low probability of happening, even if they can happen of course, because if I do I will never get out of the house anymore and will live in permanent anxiety.
I am aware I can die in a car crash every day, but I don't actually think about it.

I will amend that slightly to say that if there is something I can do to influence those statistics in my favor, I will try to. For example, I am currently taking Fluoride to try to curb otosclerosis' progression. It hasn't been proven as a very effective therapy, so I am trying to reach out to another doctor who is a researcher to figure out if it makes sense for me to get started on something a little more unorthodox.
Yes, my prognosis is poor, but I'll do whatever I can to influence it positively.

That being said, I don't think that you have Meniere's. My point is that I think all of us with this rumbling low foghorn thing have Hydrops. I think it occurs a lot more than is believed at this point. I would just like to see Hydrops be recognized and treated for what it is. It's not Meniere's and it's not just tinnitus. However, these are just my thoughts. My degree isn't in medicine. What do you think?

I don't think I have Meniere's either. I have no vestibular symptoms at all (never had them), and no fullness in the ear. I do have tinnitus and hearing loss, but both of them are very well explained by the current diagnosis.
That doesn't mean I'm shielded from Meniere's, but it's not in the forefront of my consciousness. My Tinnitus has that spot!

The low frequency foghorn could be hydrops indeed, but it could also be so many other things: our understanding is so primitive. In the otosclerosis case, one hypothesis about tinnitus relies on the fact that the bone remodeling process releases enzymes that irritate hair cells, potentially creating this "fake sound". It's not even clear if those enzymes kill the hair cells or just disturb their proper functioning. If that bone remodeling was to happen closer to the apex of the cochlea, it's not unreasonable to believe that the enzymes could be disturbing the functioning of the hair cells that are close to the apex, which are responsible for the lower frequencies, hence the foghorn noise.

We know very little I think, but one thing we do know about Tinnitus is that the same symptom can have a wide range of causes.

Now even if you did have hydrops, there wouldn't be much of a treatment aside from your typical no caffeine, low salt, low sugar, no alcohol kind of diet. I was diagnosed with it at first, and that's all I was told to do. No pharmaceutical treatment was offered.

Don't you think an ECOG can help you get confidence about a hydrops diagnosis?

 

[Jkph75]

Well certainly we could argue on how we interpret statistics, but I'm not sure it would be very productive. I do agree that it's possible to have 2 rare conditions, especially because there could be statistical correlation between both of them, but saying that something extremely rare is possible is different from saying that it's likely.

There is a natural bias in us that increases our pessimism because we've already been hit by "bad luck". In this very forum you can find claims that "if this bad thing happened to me, I'm sure I'll also get this other bad thing".
I fell for it myself when I went ahead with my surgery. There was a 1% chance of complete deafness as outcome, and I thought to myself: "well I already have a condition that fewer than 1% of people have, so yeah knowing my luck I'll probably get this too".

I personally don't want to start worrying about things that have a low probability of happening, even if they can happen of course, because if I do I will never get out of the house anymore and will live in permanent anxiety.
I am aware I can die in a car crash every day, but I don't actually think about it.

I will amend that slightly to say that if there is something I can do to influence those statistics in my favor, I will try to. For example, I am currently taking Fluoride to try to curb otosclerosis' progression. It hasn't been proven as a very effective therapy, so I am trying to reach out to another doctor who is a researcher to figure out if it makes sense for me to get started on something a little more unorthodox.
Yes, my prognosis is poor, but I'll do whatever I can to influence it positively.



I don't think I have Meniere's either. I have no vestibular symptoms at all (never had them), and no fullness in the ear. I do have tinnitus and hearing loss, but both of them are very well explained by the current diagnosis.
That doesn't mean I'm shielded from Meniere's, but it's not in the forefront of my consciousness. My Tinnitus has that spot!

The low frequency foghorn could be hydrops indeed, but it could also be so many other things: our understanding is so primitive. In the otosclerosis case, one hypothesis about tinnitus relies on the fact that the bone remodeling process releases enzymes that irritate hair cells, potentially creating this "fake sound". It's not even clear if those enzymes kill the hair cells or just disturb their proper functioning. If that bone remodeling was to happen closer to the apex of the cochlea, it's not unreasonable to believe that the enzymes could be disturbing the functioning of the hair cells that are close to the apex, which are responsible for the lower frequencies, hence the foghorn noise.

We know very little I think, but one thing we do know about Tinnitus is that the same symptom can have a wide range of causes.

Now even if you did have hydrops, there wouldn't be much of a treatment aside from your typical no caffeine, low salt, low sugar, no alcohol kind of diet. I was diagnosed with it at first, and that's all I was told to do. No pharmaceutical treatment was offered.

Don't you think an ECOG can help you get confidence about a hydrops diagnosis?

I asked a Neurotologist, Otologist, and an ENT about the ECOG. None of them would give me one. They all said that they don't use them anymore to diagnose Hydrops. If they suspect Hydrops they will give you a diuretic.

You are totally right. In fact, I wish I could delete this thread altogether. I have absolutely no idea what I am talking about. I wouldn't want some other anxiety ridden person to come across this post and conclude that they had Hydrops because of this sound. I guess this is what happens when you are forced to become your own doctor but lack impartiality and a medical degree.

 

[GregCA]

I asked a Neurotologist, Otologist, and an ENT about the ECOG. None of them would give me one. They all said that they don't use them anymore to diagnose Hydrops. If they suspect Hydrops they will give you a diuretic.

Funny you should mention that. After 6 weeks of "Sudden Sensorineural Hearing Loss", and given that I was showing losses all across the board, the second "specialist", that I had requested for a second opinion, went ahead and prescribed a diuretic for me. And guess what? A day after taking the diuretic is when the Tinnitus started. It was severe from the get go. I'm not sure I can blame the diuretic, but the timing is suspicious, especially since I now know I had otosclerosis at the time, so who knows what an unneeded diuretic would do to an otosclerotic cochlea.

You are totally right. In fact, I wish I could delete this thread altogether. I have absolutely no idea what I am talking about. I wouldn't want some other anxiety ridden person to come across this post and conclude that they had Hydrops because of this sound. I guess this is what happens when you are forced to become your own doctor but lack impartiality and a medical degree.

I wouldn't worry too much about it. We all tend to form our own medical knowledge from bits and pieces we collect here and there, and the internet is such a vast resource that it's hard not to feel empowered by the amount of knowledge that is available.
Another reason we feel compelled to do it is that there seems to be a glaring lack of knowledge from the professionals on very topic, so we feel abandoned, and so we are a bit on our own to figure things out since nobody else will do it for us.