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Do you think I have Meniere's disease?

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

  1. James

    James ''Everywhere I go there I am'' GS

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    Lucio,

    I would never call you a whiny weakling.Any problem with our major sensory organs can be very frightening and overwhelming as so little is really know about the ears anyway in my opinion. Hang in there and I hope you find answers-Please keep us posted. You will get through this!!!!
     
  2. California Sun

    California Sun Active Member

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    For me, it's possible to live with tinnitus to a point, but it really depends on the type, intensity, etc. of the tinnitus, and whether or not the tinnitus is just tinnitus. I can live with some tinnitus if it's just tinnitus and nothing else. If it involves pressure, hearing loss or anything else, it becomes intolerable.
     
    • Like Like x 1
  3. Foggyclare

    Foggyclare New Member

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    Hello Lucio. I really empathise with how you are feeling. Like you, my current symptoms are not as you read about. I have screaming tinnitus all of the time, wobble around unsteadily at work all day and my left ear is permanently full. In addition to that my scalp is tight (head fog) and I have a permanently blocked nose and post-nasal drip! Nice!!
    I don’t have dizziness - balance issues yes - but do have positional vertigo at times such as when putting my head back. For a long time after diagnosis I too thought that the diagnosis was wrong. I just didn’t want to accept it having read about the spinning, nausea and potential drop attacks. When I think about it, some symptoms had been present and increasing for some years and I thought it was ‘just’ anxiety or ‘the change’. I turned to drinking too much (a bottle of wine every night) and now accept I need to change that. One thing that I do know is that my symptoms improve when I have my B12 shot - sadly only every 3 months. Am also going to give the b5 and 6 a try. I hope that you get some good professional support - both from health professionals and at work.
     
  4. Lucio

    Lucio Member

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    Thanks, I do take b12 too, everyday, but I don't notice any difference so far.
    Besides that, this condition really sucks and it makes interacting with other people a nightmare. Other people can't know that you are suffering so they try to interact with you and then they get disappointed when you don't react in a happy way.
     
    • Agree Agree x 1
  5. Lucio

    Lucio Member

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    I finally went to an otologist. According to them, they're some of the best in Europe (no idea if it was just boasting or true). It was expensive and in another city. If any of you is interested, these are the doctors I went to:Home - Gruppo Otologico

    He said that I don't have Meniere's disease but only hydrops, which is the initial phase of the Meniere's disease. It means that my inner ear is accumulating too much fluids, therefor it feels full and the tinnitus occurs, but the membrane didn't break and the fluids didn't mix yet, so it's not Meniere's disease.

    So basically, from 0:39 to 0:50 is hydrops. If it gets worse and the membrane breaks, like it happens from 0:57 to 1:06, it is Meniere's diseases.

    I only have hydrops so far, but it could get worse and become a full on Meniere's.




    The doctor told me that a low salt diet is irrelevant, he prescribed me 2 months of diuretics and if the symptoms get more acute an anti-inflammatory.

    He said the cause of this problem is stress. He said that some people somatize emotional stress becoming bald like him, some like me through the ears.
    I think this was total bullshit and that when medics have no idea what to say they blame "stress" just because it's something vague that can't be confuted.
     
  6. California Sun

    California Sun Active Member

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    Lucio,
    For some reason your last post showed up in my watched thread notification but has not shown up on the forum itself.

    About the lo-so diet--I was told by the neurotologist who diagnosed me that lo so may or may not help. He told me to try it but if there was no improvement after 3 months, there wasn't going to be. There was no improvement so I gave it up. In all the years since, I have never noticed any correlation between diet and symptoms.

    The idea that stress initially brings on Meniere's is rather bizarre. I've never heard that one. I tend to agree with you that when doctors don't have answers they sometimes tend to make them up. I am glad that you have gotten some kind of answer--that it is hydrops--even if that answer isn't what you wanted to hear. At least you have a starting point. I wish you all the best.
     
  7. Clare

    Clare Active Member

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    I don't believe that stress causes Meniere's, but I have had a strong correlation between periods of stress and flare-up of symptoms. For me, sodium was also a trigger -- a slice of pizza would bring a day of agony -- but for many people there is not a connection between sodium and symptoms. It's such a random disease.
     
    • Agree Agree x 1
  8. California Sun

    California Sun Active Member

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    Stress is and always has been a trigger for a flareup of symptoms for me as well. I think that's quite common. This is the first I've ever heard of stress being a factor in the initial onset of the disorder, but who knows. My Meniere's started in the first ear during a period of extreme and prolonged stress, but that wasn't the case when it started in the second ear.
     
  9. Onedayatatime

    Onedayatatime Active Member

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    My GP warned me two years prior to onset of my Menieres symptoms to change my work life or expect consequences. So B.S.? I'm not so sure. Another coworker compared me to a candle burning from both ends. 2020 is the year I have picked to change my life as I turn 62. Not sure how we will do it yet, but I'm retiring from the rock pile.
     
  10. California Sun

    California Sun Active Member

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    All these years I have tried to figure out what may have caused this. I've only come up with two possibilities and I have no idea if they are even possibilities. I did think of stress--I had a horrible, horrible adolescence and this started when I was 17. I also had repeated, severe strep throat infections as a child, until my parents finally had my tonsils removed. I haven't heard the stress theory before and even though it seems bizarre, I am not going to discount it. I asked a doctor if there was a possible strep connection and he said no. So little is known about this disorder, I don't think we should discount anything. Prolonged stress is known to cause physical problems, so who knows?
     
  11. Lucio

    Lucio Member

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    In my opinion stress is too vague and doesn't mean anything. I personally don't feel stressed at all or handle it very well. I too had problems with my tonsils when I was a kid, the doctors had to cut them off but they never did and I still have them to this day.
    One thing I forgot to tell the otologist is that I took accutane for a year, although the dosage was very low. Who knows if that has anything to do with this.

    Tomorrow I will start with the diuretics for 2 months. If it doesn't work, the otologist told me he could perform some injections directly into my ear, but that would be the last resort (and also expensive).

    Do you have any experience with diuretics? I asked him more times what is the statistics for people in my situation, wondering if it gets better or stays like this forever and he wasn't able to give me an answer.
     
    • Like Like x 1
  12. California Sun

    California Sun Active Member

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    Diuretics have helped me to a significant degree. The latest doctor I saw started me on Maxide 75 which is a combination of two different diuretics. I needed to have blood work done to make sure it wasn't harming my kidneys. So far, so good. Dr. is also having me take 10 mg Claritin every day. No side effects from either thing except that the diuretic seems to make me wake up with a dry mouth. So far, I am having less hearing fluctuation, less pressure, and less tinnitus--and many more days where I feel pretty good--sometimes even "normal". The times when I feel bad are fewer and further between, less severe and not as long-lasting. Still having problems on and off due to weather and barometric changes. I don't know what will happen in the future, but for the time being I am able to function fairly normally most of the time.

    I hope the diuretics help. I was told that it might take 3-4 weeks before I started seeing a difference, so don't expect quick results. Keep us posted on how you do.

    I wish I had more advice to offer you.
     
    • Agree Agree x 1
  13. Onedayatatime

    Onedayatatime Active Member

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    I'm on the same Diuretic as CS. Only 1/2 dose due to depletion of potassium. Bloodwork was every 6 months, now annual to monitor side affects.
     
  14. California Sun

    California Sun Active Member

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    I was started on the half dose by a different doctor, but it didn't seem to help. Then I saw a different doctor. Since I was able to tolerate the half dose well, this Dr. went ahead and upped it to a full dose. He told me that people are generally started on the half dose to see how well they tolerate that and to see if that is enough to help. If they tolerate the half dose OK and if they aren't being helped by that amount, then it's upped to a full dose.
     
  15. Onedayatatime

    Onedayatatime Active Member

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    I was started at full dose and backed down due to potassium level diving. With the positive MAV diagnosis, I hope to try weening off this med in 2020.
     
  16. Lucio

    Lucio Member

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    I am taking the diuretic called "Igroton", 25 mg once every other day. It mainly contains chlortalidone.

    Do you think it's a big deal if I take it while fasting? Since I generally don't eat anything for breakfast. I've searched online if I can take diuretics during a fast but I've found no answer to that.

    Anyways it's been a week, I started to take it on the first of January, and so far I've seen no results, I don't even go to the bathroom more often. Maybe this dosage is too low for me.
     
  17. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    All, I am so grateful that I found this site and this thread!

    Lucio - thank you for posting your symptoms and following up regularly with updates. I am having the EXACT same symptoms as you! I have a blocked right ear since middle of November. It felt like when your ear gets clogged after a bad flight. I kept thinking it will go away and it did not. After two weeks I went to see my primary care doctor who said it was from allergies and put me on prednisone. In the meantime the symptoms kept getting worse. I started to develop sever tinnitus. Because of the clogged feeling, ambient noise was amplified 20 times. It was impossible to hear someone 18 inches away in a room full of people because of how loud the noise was in my right ear. The holiday season was brutal as there were many parties that I had to go to and it was awful.
    The first ENT I went to at the end of November pretty much said that everything was simply in my head and there was nothing wrong with my ear. He said that I was simply having tinnitus and told me to come back after a year! I then went to a second ENT after two more weeks of suffering. By this point it was getting pretty unbearable and I was starting to think that I would never get back to a normal like. But for my family I would have hurt myself. The second ENT gave me a hearing test and quickly told me that I had Menieres' disease! I had read about it but always that vertigo was an essential component of MD! I have had no episodes of vertigo, just the clogged feeling, some pain, hearing loss and tinnitus which can go from mild on some days to unbearable on others.
    Long story short, my doctor put me on a low-sodium, and low-caffeine diet and 12.5 mg of Hydrochlorothiazide (a diuretic). Right around Christmas, my ear seemed to unclog! It lasted two days and third day I woke up again clogged. Since then I have had a day or two of clarity otherwise back to being fully clogged. Today I was having a particularly bad day and I was looking around to see if I could read more about it and came across this forum. It is so comforting to read about how people have reacted to this diagnosis and responding to their treatments. There were days when I thought no one would understand what I was going through. I feel so much better just writing this out! I suddenly have hope that this 'episode' will pass and I will return to 'normal' someday soon. Thank you all for posting here.
     
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  18. djrugg

    djrugg Member

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    Hi Boston and Lucio, I’m using this form for the first time, so my apologies if I make some mistakes. I’ve been reading these posts for about 3 months, but when I saw your posts, I had to respond. My symptoms are exactly like yours. One ear (left) clogged, some tinnitus, some hearing loss (low tones), but no vertigo. This started this pass summer. Since it started, I’ve had two rounds of prednisone, which only help for about a day and caused intense pressure in my ears. I then had two injections of steroids into my left ear, which didn’t change the hearing loss or tinnitus. That ENT said I had MD, a second ENT said I didn’t, but he said he didn’t know what I had and that there wasn’t anything he could for me. A third ENT recently prescribed Fluconazole (antifungal) (100mg for 14 days), (my symptoms get worse when ever I have a lot of carbs or sugar. I also tested positive to mold on my allergy test, so my ENT thought there might be connection.) After a couple of days on the Fluconazole the crackling in my e tubes was much deeper and on day five my left ear opened up for the first time since the summer. After that, things would wax and wane, my ear would block up, but I was able to open it by opening my mouth (as if I was yawning). On Christmas eve, I had a small glass of wine and a half of chocolate chip cookie and my ear blocked up again for another day, but then opened up again. Things continued to wax and wane as I finished the 14 days of Fluconazole and for a week after when at which time my ear blocked up again for about two days. It opened up again yesterday. I saw my ENT today, my hearing is still the same and because of that he’s not sure the Fluconazole really had any impact, he recommends doing nothing now and I’ll see him again in in six weeks. At the beginning I also suffered from loud noises, but it improved over time, however, I’m still uncomfortable in a room with a lot of background noise, especially when my ear is blocked up. I’m on a low sodium, low carb diet, and I take 12.5 mg of Hydrochlorothiziade. I also take an antifungal supplement (caprylic acid) twice a day. Thank you and all the others for sharing your story. I’ll continue to update you as I learn more.
     
  19. jkc

    jkc Member

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    Go see a Neurotologist not just a regular ENT
     
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  20. djrugg

    djrugg Member

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    All three are Neurotologist.
     

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