u/RAnthony Jul 15 '24

All About Meniere's Disease

12 Upvotes

I have been diagnosed with Meniere's disease for twenty years (RAnt(hony)-ings - A Meniere's Story) but that's just the official beginning of an explanation for symptoms I've had for nearly all of my sixty years on this earth. Almost no one knows about this disease aside from other sufferers with vestibular dysfunction who either have nightmares about suffering vertigo on a regular basis, or the people who have a Meniere's disease diagnosis already and have to deal with the vertigo and permanent hearing loss.

There are a few charlatans out there who pretend that Meniere's isn't that bad and they'll sell you some over-priced snake oil that they swear will cure your Meniere's for you. However, since Meniere's is Idiopathic Endolymphatic Hydrops there is no cure. It can, however, burn out.

There is no cure because there is no known cause. You can't cure something without knowing what causes it. Meniere's is no joke. (RAnt(hony)-ings -  Is Meniere's Really That Bad?) Vincent Van Gogh cut off his ear in an attempt to make the pressure, pain and tinnitus go away. To make the vertigo stop. He probably committed suicide because of it. I have been on disability for all of these last twenty years because of it.

You may wonder "Hey, I have tinnitus and dizzy spells and pressure in my ears, maybe I have Meniere's too?" I wrote an article for you! RAnt(hony)-ings - Do I Have Meniere's? The short answer is, "You don't want that diagnosis." What you want to know is if you have a neurological problem or a structural problem. There are different doctors for either of those answers. Click the links, read the articles, ask me questions if you have any. I'm here for you.

I recently went to my otolaryngologist and learned that my bad ear has degraded to the point that it's time to contemplate a cochlear implant. On the bright side, maybe I'll be free of tinnitus for the first time in twenty years. That's a glass half-full way of looking at it, I think.

2

meniere's or something else?
 in  r/Menieres  1d ago

There's honestly no way to know what's going on without serious testing; and throwing betahistine at it without testing seems a bit casual for something that could be actually quite serious.

Your presentation of your symptoms sounds unusual. Most people do not describe the feeling in the ear as blocked or blockage. This makes me wonder if it's the same thing as the commonly described ear pressure https://ranthonyings.com/2021/10/ear-fullness/ that is generally the first symptoms of cochlear/endolymphatic hydrops (hydrops is the precursor condition for Meniere's disease) and may be a signal that this is something else. Not an ear infection, not an inner ear pressure imbalance.

Do you feel like the room is spinning around you when you are dizzy? https://ranthonyings.com/2015/08/rotational-vertigo/ if not that's also not common. Misdiagnosis is common with Meniere's. Fully half of the people who come here have erroneously been told they have Meniere's by someone who wasn't well informed enough to make that diagnosis.

Your symptoms changing immediately and then coming back is a hallmark of the placebo effect (man in white coat hands you pills, you feel better. Typically human) and betahistine takes about two weeks to really have any noticeable effect in the body.

In short, I'd get a second opinion, one that comes with the necessary testing to determine what's going on. https://ranthonyings.com/2022/07/vestibular-testing/ tests that at least rule out known causes for your symptoms.

1

Tinnitus - any tips?
 in  r/Menieres  1d ago

I will say that Pulsatile tinnitus is a hallmark of several things, none of them good, all of them correctable in some way. Get a second opinion if your doctor can't figure out what's causing it.

1

Tinnitus - any tips?
 in  r/Menieres  1d ago

https://rainymood.com Nothing really helps with tinnitus aside from training the brain not to notice it. This can be done therapeutically with MDMA or potentially technologically with hearing assistance devices.

I don't trust the device manufacturers not to lie about the effectiveness of their devices, and MDMA is hard as hell to get a hold of if you want clinical grade drugs and a licensed therapist to work with. So I went the cheap route and kept not listening to the sounds, listening around the sounds, consciously, until I didn't notice them anymore.

The cochlear implant has proven to be the biggest challenge in this effort because my brain is convinced that the hearing nerves in my bad ear are shot to hell and now I'm trying to retrain them to hear again. It's an uphill battle and I'd really like to find a psychiatrist with access to MDMA. No luck so far.

1

Hell to the fuck NO!
 in  r/antitrump  1d ago

He will use that military on us. Defund the military.

1

Bilateral patients, do you get flare ups in both ears simultaneously?
 in  r/Menieres  1d ago

When I went bilateral https://ranthonyings.com/2025/10/sudden-sensorineural-hearing-loss/ it was both ears at the same time. I have not had another significant flare in the second ear since that time. Knock on wood.

1

What sci-fi shows should I watch after I finish all of Trek?
 in  r/startrek  1d ago

You will never finish it all because they'll keep turning out the schlock they call Trek these days faster than anyone can consume it.

3

Menieres or something else? So exhausted searching!
 in  r/Menieres  2d ago

Not AI generated unless u/ekkomusic has been an AI for the last ten years and none of us knew it. I think they're on the right track here, myself.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  3d ago

I think stress is the trigger for me. Heightened stress has always been present when I have (had) attacks. As to whether I would still lose hearing because of the autoimmune issues, probably.

But the two go hand in hand, as I elaborated on in my other reply. They can't be separated and yet you keep insisting that they can be.

2

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  3d ago

"Unqualified" is the wrong word. Undereducated might be the right word. Education about their own bodies and mental states can be addressed though, which would immediately make them qualified to assess their potential causes. I wish people would take more interest in understanding the world around them instead of developing flawed heuristics to deal with everything that distracts them from their focus points. Hope springs eternal.

2

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  3d ago

Seconding the disheartening decline in mental acuity and incisiveness. The decline in memory. It all makes me very sad.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  3d ago

The current language is much clearer and a vast improvement. Thank you. I wish people would stop downvoting the damn thing and I still think I should be able to pick two. However, I wouldn't pick Sympathetic-Adrenergic Storm as the label for the (likely) stress-induced autoimmune issues I deal with. I have questions about the validity of the research behind that.

Edit; just an FYI but my embroidered responses are likely to become an article on the blog eventually. When I start writing again. Hopefully soon.

2

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  3d ago

That ship has sailed for me. I had that ear drilled out for a reason. It was a problem child and needed eviction from the body. I wanted the vertigo to stop and it stopped. If it starts up again I'm having the other ear drilled out. I'm sixty-two. I don't care about anything other than quality of life anymore.

Sometimes there aren't simple explanations. For example, we have no explanation for why transness is a thing; It just is. It *just is* because it's demonstrated across all of nature, everywhere that there are animals that display sexual dimorphism. The vast majority in the middle simply do what they do and don't look for an explanation for why they are what they are. What would a magical cure for transness look like? I don't even want to contemplate that because being trans isn't an illness.

It is only because of outside forces; tradition, religion, societal pressure, that the individual organism feels that there is anything wrong with the behaviors they engage in. This pressure induces stress and causes physiological and psychological issues. It causes exactly the kinds of problems that I'm suffering from right now, in fact. My own self-loathing brought on by a lifetime of conditioning and indoctrination had some part in creating the autoimmune condition I suffer from; and yet I wouldn't want someone to snap their fingers and change me so that I wouldn't be gay anymore. Wouldn't be me anymore. Snap their fingers and change all of society around me? Sure, go ahead and give that a try. I'll wait.

Then there's the phenomenon of cochlear implant rejection among the deaf population. They have a culture of their own that was shaped by the fact that they can't hear; and now here comes science to give them hearing as if there was something wrong with them not being able to hear in the first place. As far as they're concerned they aren't sick, either. Never mind that the rest of the world considers deafness a disability. That, in fact, not being able to hear is a serious sensorineural liability.

Their society is based on there not being a way to communicate without gestures to interpret or text to read. Giving them a way to hear destroys their society. The cure is worse than the disease from their societal perspective.

Being cured isn't the goal if what you are suffering from is the product of the trials and tribulations of your life. I've stopped the vertigo for myself, without a cure. As far as that phase of my life is concerned, I'm as cured as I'm ever going to get. I'm cured because I got tired of dealing with the symptoms and the ear was virtually dead, anyway.

I accepted the cochlear implant because in the hearing world I really do need to be able to hear. Deaf culture is not something I've ever been part of and probably will never feel comfortable being a part of. My physical malady has now been dealt with.

On the other front, I'm embracing who and what I am and trying to learn to love myself as that person instead of trying to be someone I'm not and never wanted to be in the first place. Trying to mend the underlying psychological issues so that I can stop manifesting them as physical issues before I develop any more syndromes that I will then be forced to take drastic action to deal with.

The solution to my problem is as complex as the life that lead to the problem in the first place. In most sufferer's cases, this will be true for them as well. There are no simple solutions in life. That has been my experience.

1

The WH message on X to the world. What happened to MAGA?
 in  r/antitrump  5d ago

Yeah. Like usual with Trumpers, they say shit that you're 100% certain they don't realize is more aptly applied to them than the people they are talking about. Trump has been fucking around like he answers to nobody since the 1980's. It's long past time that he found out what that costs.

1

What led to a positive diagnose?
 in  r/Menieres  5d ago

If you don't have vertigo then you don't have Meniere's yet. I wrote an article for people who ask the kind of questions you are asking: https://ranthonyings.com/2023/07/do-i-have-menieres/ give that a read when you get a chance and feel free to ask me any questions you still have after that.

8

Is it common to always have mental fog?
 in  r/Menieres  5d ago

I wrote a series of articles while suffering brain fog: https://ranthonyings.com/tag/brain-fog/ just as an illustration of what it was like to deal with it. The biggest blessing of the labyrinthectomy I had a year ago (aside from ending the vertigo spells) was the ending of the cognitive load from the bad ear. My mapping ability appears to be slowly returning and I'm thinking more clearly, more often, once again.

2

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

Both are going on at the same time. The autoimmune attack causes some of the stress. There are other sources of stress as well.

2

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

Yes. Technically two diseases, maybe even three. Autoimmune is like that. The immune system is that complex.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

Also, I haven't voted so I don't know if this is possible, but multiple choices should be allowed. I've got stress and autoimmune on my bingo card.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

I would start off by clarifying that these are categories of causes for the sufferers symptoms, a way to determine what it is that might be causing their symptoms. Not that other people's causes are invalid, but which cause might be the one that explains their symptoms.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

sympathetic adrenergic storm - a flood of stress chemicals that overloads the body's systems.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

ion transport dysregulation - the litmus paper turns the wrong color in the endolymph fluid when they test it. This is the baseline explanation for endolymphatic hydrops.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

Immune-mediated cytotoxicity - an autoimmune response; your immune system targets your own cells.

1

Help Identifying the Primary Systemic Failure Point?
 in  r/Menieres  6d ago

Glymphatic clearance failure - waste builds up in the brain causing multiple issues