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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 Member

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    No worries guys, unfortunately we are on the same boat.

    Have you experienced the same disappearing of ear wax just like me?
    All the doctors told me it's nonsense and that it doesn't mean anything but I find it impossible to believe.
    Earwax is a natural phenomenon, our ears produce it to catch all the bacteria and the dirt from our ears, so it is a protection for our ears.

    Since I had clogged ears many times even due to earwax, I became a bit of an expert on it. The ear doctors have taught me throughout the years that it is very stupid to use those cotton sticks to clean the ear, since all they do is pushing the earwax against the eardrum. Therefore they had taught me how to properly clean my ears, which was by pushing water into them from beneath during the shower. This way the water would get into the ear and immediately fall out due to gravity.

    Now, since I had stopped to use the cotton sticks, I would just leave earwax fall off on its own or do this procedure during the shower. But now? Zero earwax, it doesn't exist anymore, my ears don't produce it anymore. How is that possible? To me there must be a reason for it. Could it be that something happened to the glands that produce earwax? Could it be that the lack of earwax leaves too much dirt and bacteria into our ears hence our inner ears get infected and we develop hydrops or Meniere?

    So, do you still have earwax? Just a curiosity.
     
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  2. Rich

    Rich Member

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    Well I have to say I thought it was just me but I don’t produce ear wax in my mm ear either. Don’t know if there would be any connection between the two or not.
     
  3. djrugg

    djrugg Member

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    I have ear wax, but I find it interesting that my ear issue started when I was routinely using cotton swabs to clean my ear canal, which I now understand not to do. I believe the wax is a protective mechanism for the ear and I wonder if the removal of it or lack of it may have played a role on our ear problems.
     
  4. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    That is really interesting! The first ENT that I saw (who thought it was all in my head!) told me that my MD ear was remarkably clean - no ear wax at all! He asked if I use cotton swabs to clean them. Like Lucio, I learned that swabs are for your ears and stopped them a long time ago.

    Update: After a day and a half - Thursday and Friday - my ears started to clog up again yesterday late afternoon. My tinnitus is very pronounced this entire past week and now have it both ears. The impacted right ear is worse than the left. I have been very careful with my diet - low sodium and low caffeine. I have also been doubling my 12.5 hydrochlorothiazide - taking them a few hours apart to see if that helps, with moderate success.

    I am completely discouraged and depressed with the current treatment. Things are not getting better and the tinnitus is very bothersome. I also have constant headaches. I have asked to see my ENT but have not heard back! My MRI came back negative for any tumor or MS (thank goodness).

    I am going to throw another dimension into this - I am a CPAP user due to sleep apnea.i have a structural problem and not a weight issue (I am 5-8' 156 lbs). Anyone else here use CPAP regularly?
     
  5. djrugg

    djrugg Member

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    Boston, I tried doubling my 12.5mg hydrochlorothiazide for about two days and it really dried out my head making me even more uncomfortable. I’ll be curious to know how you do. BTW, I’m not CPAP user.
     
  6. Gardengal

    Gardengal Member

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    There are articles that discuss menieres and sleep apnea. Maybe google those terms together. I can’t remember now where I saw it.

    I hate to be the person that ruins the pattern but I make copious amounts of ear wax. Both good and bad ear. Tons.

    I heard a chiropractor talk about ear wax. One of his patients said there ear made more after an attack, maybe. Anyway, he said it has to do with Arnold’s nerve, or Arnold’s gland. ENTs don’t discuss it much. Maybe you could also look in to that term if you were interested. I (obviously) have done zero research on it.
     
  7. Mr. Tom

    Mr. Tom Member

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    Where ever I park my RV
    I do. I don't even like taking a nap without it. I have been using a CPAP for about 18 years. I never thought about the ear wax 'issue' being connected to MM. I have noticed my right ear has next to nothing compared to my left when I dry them.
    Just an FYI,I started the JOH regimen at the first of the year,and about all I can say is the screaming in my right ear (one with MM) is quite a bit louder.
     
  8. California Sun

    California Sun Active Member

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    I used the have the type of hearing aids that fit all inside the canal. I had a lot of ear wax when I wore them, but that's the only time in my life I ever remember having a lot of ear wax. I never noticed any difference in ear wax between the Meniere's ear and the other one when I had it only on one side. Personally, I don't believe that there is any connection between ear wax and Meniere's. That just seems really far-fetched to me.
     
  9. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Happy Sunday Everyone!

    I am going to try and respond to all the notes since my last post.

    Lucio and Djrugg - please keep posting updates. Like you, my symptoms (& diagnosis) are new and quite confounding. Like you, I too am grateful that I found this forum that is active and supportive. Knowing that you are not alone going through this is enormously comforting. Some days will be better than others .

    1. Earwax - there seems to be some connection but does not seem indicative of MM. There may or may not be a connection. Given that this impact the ear (& process) it does not seem out of the ordinary. The area that wax forms in is extremely sensitive and the wax forms to protect that area. Which is why a cotton swab or drops to clean it strictly a no-no.

    2. CPAP - Thank you Mr. Tom. Like you, I have been using CPAP for over a decade and cannot sleep even one night without it. I was only wondering if the constant pressure on the ear causes MM in some people. This is an open question. In fact I came across a study (though limited) that suggests that CPAP may actually be effective in management of MM -JCSM - A Pilot Study on the Efficacy of Continuous Positive Airway Pressure on the Manifestations of Ménière's Disease in Patients with Concomitant Obstructive Sleep Apnea Syndrome .

    3. Here is another study I came across that suggests statin, especially Rosuvastatin (Crestor) may be beneficial for subjective tinnitus - https://www.researchgate.net/publication/329016045_Effect_of_Statins_on_Hearing_Function_and_Subjective_Tinnitus_in_Hyperlipidemic_Patient. I have also seen several studies that suggests that if you are on statin to take Co-Q10 supplements.

    Yesterday was not a good day for me, with variations in the level of tinnitus and hearing in my right ear (affected ear). I now have higher level of tinnitus in my left year as well :-(
     
  10. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    How is everyone doing?

    Lucio - how are you doing?
    Djrugg - any updates?

    I have been having a rough week. I had to travel for work to Arizona. I took a 2 hour flight and then a 5 hour flight. I was dreading it but it turned out that the pressurized cabin actually helps with the ear pressure . For a few hours, I actually felt good! Within minutes of landing, things go back to being bad. The noisy airport was too much to take. To me the tinnitus, echoing of ambient noise are the most bothersome. I hope relief in on thee horizon. It is also difficult to watch your sodium intake when you ar traveling. Any suggestions?

    Take care.
     
  11. djrugg

    djrugg Member

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    Hi Boston,

    I think you are brave to travel by air.
    Hi Boston,

    Thanks for sharing your travel experience. I haven’t been on a plane since this started 6 months ago and I’ve only been out to dinner once or twice. With the increased sodium and higher background noise it’s not an enjoyable experience. How did the increase in sodium affect you? Did it make things much worse? Maybe an experience like that can help you rule things out or better understand your limits. Not much has changed here.

    Best
     
  12. djrugg

    djrugg Member

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    Hi Boston,

    Have you looked at the supplements discuss on this site? Many people have had good results. If you haven’t check out JOH regimen: http://www.zoominternet.net/~kcshop/JOH.PDF

    Joe Bongiorno’s story also has a lot of good information in it as well: Meniere's Disease - a success story and treatment plan - Joe Bongiorno

    Best
     
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  13. Clare

    Clare Active Member

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    I agree that the airport is a terrible part of traveling. The patterned carpeting and moving people in the long, wide walkways would trigger nausea and potential vertigo. My vestibular therapist recommended ordering a wheelchair through the airline prior to my trip. It made a huge difference, and Delta's service was excellent. Sure, I felt a little embarrassed at not appearing disabled enough to warrant a wheelchair, but it was better than public vomiting.

    Diet management while away from home is indeed challenging. Stay away from foods with tomato sauces or beans. Choose a tuna sandwich over one with lunch meat. Emphasize fresh fruits, veggies, etc. My last international trip was to Mexico, and it was a big challenge. Knowing that, I planned the end of the trip to be in a pleasant hotel on the beach so it would be tolerable if I was stuck with vertigo. I don't speak Spanish, and just couldn't manage the diet. Sure enough, by day 4 of the week, I was grateful to have a pleasant room to accommodate dizziness without affecting my traveling companion. After that trip, I decided to limit international travel to places where I speak the native language and can read menus. A year later I had laby surgery, and have no problem with vertigo/nausea anymore. Yay!
     
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  14. wendy

    wendy Member

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    Good article about Joe Bongiorno. Thanks for sharing. It proves that alot of this is trial and error.
     
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  15. djrugg

    djrugg Member

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    Wendy, When you get a chance would you be so kind to “like” that post? I need one “like” to change my signature.

    Thanks
     
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  16. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Thank you, DJRugg. I was going to start collecting all of DOJ's items this weekend. Since I was traveling, I could not get organized. I am flying back tomorrow and am a little nervous. <fingers-crossed>

    I had not choice but to eat out today and yesterday. I have been limiting the quantity with the hope minimizing the sodium intake. I will know in a day or two! Tinnitus was not bad today as it was yesterday. I will keep you all posted.
     
  17. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Hi Clare,

    Thank you for your note. I am glad you have complete relief now! How did the low-sodium, caffeine diet work for you?
     
  18. Clare

    Clare Active Member

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    Controlling sodium was very important, as there were consequences when I lapsed. The low-sodium diet made me a pretty good cook over the years. I never learned to like coffee, so caffeine was never an issue.
     
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  19. djrugg

    djrugg Member

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    Hi Boston,
    Hi Boston,

    How are you doing? How was the flight back and the higher sodium fast food? Did any of it make things worse?

    I hope you’re doing well.
     
  20. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Hello Everyone,

    Quick update. My flight was long and fantastic! I felt normal for each of the 5 hour flights for the first time in months! Even the next day my fullness in my right ear was minimal, the tinnitus was bad though. Today I am having a horrible day with severe tinnitus and ear fullness. Hearing continues to be bad .

    I just ordered my JOH starter kit from VitaCost from the pdf file. I will keep you posted how it goes.

    A couple of questions -

    1. has anyone tried Pressure pulse treatment? I am curious as my experience flying was very positive .

    2. What is the recommended dosage of B5/B6, which was not on the JOH pdf file?

    Please keep posting on how you are doing and how your appointments are going.

    Lucio? Djrugg? How are you doing?
     

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