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Do you think I have Meniere's disease?

Discussion in 'Your Living Room' started by Lucio, Nov 1, 2019.

  1. Lucio

    Lucio New Member

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    An entire forum built for this thing, you gotta love Americans and the internet.

    Well, here I am because 6 hours ago I was diagnosed with this disease, which I had never heard before. I am full of doubts, so, not trusting my doctor fully, I went to the internet to understand more about this disease. I found the regimen of John from Ohio and this forum.

    DO YOU THINK I HAVE THE MENIERE'S DISEASE?
    I don't even think I have it. Tell me your opinion.

    Story: I have had problems with my ears pretty much every summer for the last 6 years. I went to the beach, swam a bit, and my ears would start to hurt. I went to the ear doctor, wasted 200 €, and fixed the problem in a week or two. All these things it has been an otitis (ear infection) or a foruncolosi (not sure how to translate that in English, it's when you have a pimple in your ear canal).

    TODAY​

    So, even though I love the sea, I started to hate it. But every summer some bastard bugs me with "come on to the beach, just use ear plugs" and stuff like that and I ended up going even this year. And, as per usual, my ears started to bother me.

    Symptoms: my right ear is clogged, I have a sensation of fullness, there is a constant tinnitus and a few times I had some acute whistles. The ear gets more or less "clogged" during the day, I have no idea why. I have zero vertigo, zero dizziness, zero nausea. It is evident to me that there is something going on in my inner ears (even my left one), because, unlike normal ears, my ears are currently dry, there is zero earwax coming out of them. The ears are perfectly clean all the time, which is weird, as if there is stuff blocked inside of it I guess.

    So I went to my ear doctor as usual, thinking that it was the usual otitis or pimple, he agreed that I had a pimple, gave me the cure and took my money. The cure didn't work this time though and I have had my right ear clogged for more than 2 months now.

    Therefore, I decided to change ear doctor. I went to the new doctor, described my symptoms to him in 30 seconds, he measured my hearing (which I'll attach below) and immediately declared that I have Meniere's disease or an hydropic crisis due to compression (I later found out that they are pretty much the same thing).
    I told him that I have zero vertigo and zero nausea but that didn't change his mind one bit.
    He said that this thing cannot be cured but only be kept under control and told me that I'll have to follow a low salt diet (but I already eat very low salt).

    I used accutane about a year ago to treat my acne, a low dosage that didn't even work that well. The doctor said that the accutane could have influenced this ear problem.

    [​IMG]


    He prescribed me FLUNAGEN for 20 days. FLUNAGEN is an anti-vertigo pill, even though I have zero vertigo.
    He also prescribed me DEFLAN, which is a glucocorticoid, an anti-inflammation pill.
    These pills can cause depression according to the papers included in the medicine package. Accutane too was said to cause depression. I already am not the happiest man on Earth so I'm not very excited about it.


    So what do you think? Do you think I have Meniere's disease or not?

    Tinnitus? Yes.
    Clogged ear? Yes.
    Vertigo? No.
    Nausea? No.


    Thank you for your time guys
     
  2. Lucio

    Lucio New Member

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    I don't know if trying this therapy or not since these pills have serious side effects such as "severe depression and suicidal thoughts".
    Should I give it a go or go back to the first doctor asking for his advice again? It's crazy how severely different their diagnosis have been.
     
  3. Jimii

    Jimii Member

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    It is funny the differences in doctors.
    In my very non-professional opinion, yes you have it (or something very similar). You have three of the 4 symptoms.

    Approximately 18 years ago I went to the Dr. because I had weird symptoms, but not vertigo. I never got a full blown vertigo attack until this year. Lots of small ones over the years but nothing to go running to the Dr. for. My Dr. at the time would not diagnose as Meniere's because I was missing the vertigo. It was the only symptom missing.
    I knew I had it, because of family history. Time proved me correct.

    Jim
     
  4. wendy

    wendy Member

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    A clogged ear that would not resolve was my first symptom. Then the hearing loss in the lower frequencies and tinnitus. I would vote that it is very possible.
     
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  5. Lucio

    Lucio New Member

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    Nov 1, 2019
    3 out of 4? What's the third one?

    Clogged ear, tinnitus and... ?

    Mmh, couldn't it be something else since I have no vertigo nor nausea? I was thinking about going to another (it would be the third) ear doctor. Do you think it's a good idea or should I start the therapy?

    I clearly don't want it to be so since it was described as a chronic thing.
     
  6. California Sun

    California Sun Active Member

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    May 23, 2019
    I do know that you have experienced three of the four symptoms of Meniere's--a "clogged" ear, tinnitus, and hearing loss so my guess--and it's only a guess--is that it's possible that it's Meniere's. My first ear started out with a feeling of being "clogged" that would not resolve. Then came the tinnutus, then the hearing loss. These symptoms came and went, but gradually became worse over time. For three years I had an occasional feeling of imbalance but no vertigo, then at that point the vertigo started. That's when I was finally dx'd with Meniere's.

    The doctor you should be seeing should be a neurotologist. ENTs may or may not know anything about Meniere's. All I can suggest for you at this point is to seek a third opinion.
     
  7. zotjen

    zotjen Member

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    A doctor cannot diagnose you with Meniere's disease just from a hearing test and by you giving him a 30 second description of your symptoms. The most he can do (or should do) is possibly suggest you have Meniere's and then perform additional tests such as an ABR and ECOG and especially an MRI to rule out other possible causes.

    If I'm reading your hearing test correctly, it does show you have hearing loss in the lower frequencies which is a symptom of Meniere's but even that is not conclusive. You might be better off finding another doctor that specializes in Meniere's, such as a neurotologist.
     
  8. Lucio

    Lucio New Member

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    Dx'd means diagnosed?
    I've looked it up and it seems that the "neurotologist" figure doesn't exist where I live.

    I am skeptical solely because I had my ear clogged so many times and it was always something else like otitis or a pimple, now I have the same exact symptoms and this doctor declared "you have Meniere's disease".
    The only thing that is different is that it's been going on for 2 months this time, and it's been so because since it doesn't hurt, it just annoys me, I tolerated it for a longer time.

    This disease seems like a mess, some people say it's terrible and others say it's nothing. Do you do just fine with a low salt diet or do you need to take these pills with horrible side effects on and on?

    There are people who say they fixed it with a chiropractor, people who say they fixed it by avoiding carbohydrates, all sorts of stuff. Who to believe? I don't even know if I have this disease and even if I do I don't know how to cure it.

    Agreed. He said that we will do an MRI after a month if the therapy he prescribed to me won't fix it.

    Yes my test shows that in my right ear a low frequency sound needs to be around 50 decibel in order to be heard. That is a loss of hearing, but isn't that normal since my ear is clogged? If I'd block my left hear with my finger my hearing with that ear would be lowered too.

    Unfortunately it looks like there are no neurotologist where I live. So what should I do? Go ahead to a third ear doctor or go back to the first one and tell him "your therapy didn't work, I went to another doctor who said that there is no pimple and that I have Meniere's disease" ?
     
  9. Jimii

    Jimii Member

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    It is almost nothing until the vertigo hits. Then it is terrible. Hyperacusis is pretty bad too. That is what originally made me go to the Dr. 18 years ago. But it rarely is around.
    Right now I am taking nothing and am on no special diets. April, May and Sept. were bad months for me. The rest of the time this year, I have been nearly normal.

    Jim
     
  10. Jimii

    Jimii Member

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    Are you in a country where you can obtain Serc?
    I have some incoming, but have yet to try it. (Canadian pharmacy via Singapore)

    Jim
     
  11. Megan Henry

    Megan Henry Member

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    Sounds like cochlear hydrops. Meniere's disease without vertigo. Pretty sure it's what I have. I had the same symptoms when mine first started 6 months ago and I started to get progressively worse vertigo, not the rotation Al type, but the kind that feels like I'm rocking on a boat 24/7. The rocking started about 4 months I into my diagnosis. Sounds like you might need to find another doctor. See a neurotologist.
     
  12. California Sun

    California Sun Active Member

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    Dx=diagnosis

    I have had Meniere's for almost 50 years. I've tried all kinds of different things and nothing has really worked for any length of time, if it ever worked at all. I had shunt surgery on both ears (I'm bilateral) and at least so far that has eliminated the terrible vertigo, but I have continued to have the other symptoms on and off, primarily in the left ear. The last doctor I saw prescribed a stronger diuretic than the one I was taking and also a daily Claritin (antihistamine). I've been taking them for about a month now and it seems to have helped. I haven't had any side effects, just had blood work done and so far, so good. So I'll just have to see what happens.

    I watch my salt intake but am not strict about it--never noticed that it ever made a difference one way or another. What works for one, may not work for someone else. I follow a low carb, no sugar diet but that is to maintain a low body weight. It has made no difference one way or another as far as the Meniere's goes.

    I don't know how anyone can say it's "nothing". Even without the dizziness/vertigo, it's pretty bad and diminishes the quality of one's life.
     
    • Agree Agree x 1
  13. Lucio

    Lucio New Member

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    Nearly normal means no tinnitus, no vertigo and not a clogged ear?

    What's Serc?

    Unfortunately I don't think there are neurotologists where I live. The vertigo seems to be an inevitable occurrence then...

    You're telling me that you've lived 50 years with constant tinnitus, vertigo, vomiting around, hearing loss and a clogged ear??
    The mere thought of it makes me panic, I can't imagine living my entire life with this buzz in my ear all day long.

    Have you tried the protocol of John of Ohio? He said he's symptoms free so besides his hearing loss, he has none of the rest.

    I'd much prefer losing my right ear rather than having this tinnitus all day long.
     
  14. Lucio

    Lucio New Member

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    Also to anyone: do your ears produce earwax?? My ears used to produce earwax naturally, and it would fall off pretty much by itself. I could feel a little ball of earwax in my ear and I would pull it out.
    Since I've had my ear clogged, I've produced ZERO earwax at all, not one millimeter of it. This can't be normal. Is it the same for all of you?
    This factor leads me to believe that there is something blocking my ear canal. Could it be that rather than Meniere's disease? Do you still produce earwax from your affected ear?
     
  15. California Sun

    California Sun Active Member

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    No, it hasn't been constant. Not at all. The shunt surgeries eliminated the vertigo long ago, but the other symptoms (pressure, tinnitus, fluctuating hearing) have continued to come and go, primarily in the left ear. I have had many complete remissions, some of them lasting for years. I do have permanent hearing loss--severe in one ear, moderate in the other. The nature of this disease is that it tends to be remitting/relapsing. The symptoms come and go. I have tried certain components of the JOH over the years. They did not help.
     
  16. Jimii

    Jimii Member

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    Lucio,

    I should have been more clear what normal is to me. My normal is tinnitus 24/7/365. It hasn't stopped for 18+ years. I always have that stuffed feeling in my right ear. Dr. put a camera down there and it looks completely normal he said. The terrible vertigo just comes and goes when it wants, accompanied by hyperacusis following the attacks.

    Serc = Betahistine. The preferred treatment in most of the world, except the US.

    Jim
     
  17. Lucio

    Lucio New Member

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    The shunt surgery is the one where they completely cut off the nerve so basically you lose your ear completely?

    Could you describe a bit better your life with this disease? In a year how many days do you have the vertigo? What about the tinnitus? A few days in a year or it's something that it's something with you?

    Damn, how can you tolerate a life like this? I don't know if I could live with this noise in my ear all my life.
    There's nothing you can do to remove it? Did you think about cutting the nerve? Did you try John of Ohio's method?

    My mood is severely affected by this tinnitus and the pressure, I don't want to be around anyone, and at work (I work with the public) it bothers me even more.
     
  18. Lucio

    Lucio New Member

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    Today I went to another doctor, this was a general doctor though, not an ear doctor (I'll go to the first ear doctor next week) and he acted a bit like I did.

    He said that without the vertigo, we can't talk about Meniere's disease. He said that if you hear the noise of some hoofs, it's better to think it's a horse rather than a zebra. Meaning that it's more likely that it is something that is obstructing the canal that goes from the nose to the ear rather than Meniere's disease since I don't have the vertigo. He checked my eardrum and he said that it looks a bit grey and "pushed in", as if air doesn't flow normally from my ear-nose canal.

    I hope he's right. To be honest I thought pretty much the same thing, it seemed strange to me how sure the 2 ear doctor was since I don't have any vertigo.

    I'm shitting my pants, I'm already a sad person, if I actually do have this thing, I won't take it easily.
     
  19. PhDAngie

    PhDAngie New Member

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    Lucio-I have what you have (I think) it is Meniere's without the vertigo-my doctor diagnosed me with Cochlear Hydrops.
     
  20. PhDAngie

    PhDAngie New Member

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