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Do you think I have Meniere's disease?

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

  1. djrugg

    djrugg Member

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    Hi Boston,

    Here’s a conversation on B5/B6 that might be useful My B5+B6 Log
     
  2. djrugg

    djrugg Member

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    Boston,

    Things have not changed much for me. I have days of varying fullness in my left ear. The odd thing though is the more full/blocked my ear is the less the tinnitus, and the less blocked the greater the tinnitus.
     
  3. wendy

    wendy Member

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    100 MG of B6 and 125 MG of B5 if I remember correctly.
     
  4. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Thank you, Wendy .
     
  5. Lucio

    Lucio Member

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    Ear wax: Ok I have read that some people keep having ear wax, so I guess that it is not a direct cause to Meniere, but I still believe that it has something to do with it or with the other symptoms. It's just too much of a coincidence for my ear wax to disappear all of a sudden when these problems arise. It just can't be, logically it doesn't add up.

    Diuretics: I am today at day 26th of my treatment, meaning that I have taken exactly 13 pills of diuretics, 25 mg each. I have noticed no difference at all in my peeing. I was told and expected to be running to the bathroom all the time but I've had zero changes in that regard. I pee exactly like before.

    I am keeping a spreadsheet of my symptoms throughout the days, and so far I had

    low symptoms 27 % of the time
    medium symptoms 55 % of the time
    high symptoms 9 % of the time
    almost zero symptoms 9 % of the time

    Stress: although I have laughed off at "stress" as a possible cause before, I have had a few days in which I've experienced a rapid worsening of my symptoms due to very stressful situations. So I have to change my mind, stress might indeed be a cause. Read again for a second thought about it.

    IS TINNITUS CAUSED BY BLOOD FLOW?
    So, I came across this news right here: Life-changing surgery helps woman with rare form of tinnitus


    It basically says that a vein in our brain gets narrower and narrower and because of this, the blood flows through it with effort, and this causes tinnitus. Now, the article says that this is specific to the tinnitus that sounds like ocean waves and not to the high pitch whistles (I've had both) but nonetheless I found it interesting.

    Now, some dots that connected to me after watching this report:

    1. what does sodium do to our blood? It causes our blood to become more dense or more liquid. So if low-sodium is good for us, it means that a watery blood is beneficial to us. Which, makes perfect sense if we hypothesize that our veins are small.

    2. what do diuretics do to our blood? Again, they remove salt from our blood by making us pee. In other words, they make our blood more liquid. Which again makes perfect sense if we hypothesize that our veins are small.

    3. I have suffered in the past of varicocele, which is nothing else but a small vein, the blood flows through it with effort, which causes the blood to get stuck sometimes, ending up in pain. Could it be that the same thing is happening in our ears?

    4. When I've taken blood tests, more than once the nurse told me that my veins are small and hard to catch. Other nurses have done it with ease and when I told them what the other nurse had told me, they told me that the other nurses were simply incompetent. It could be true, but it's again another hint that my veins could be indeed narrow and that my blood could have difficulty in flowing inside them.

    5. I mentioned above that I had a few days in which my symptoms have worsened a lot in a rapid manner. I mean in the matter of an hour. It happened when I got stressed. I wouldn't have described myself as "stressed" in that day because I still had everything under control, but the fact is that I went from normal to being very concentrated in my head, thinking about every single move I took in order not to commit any mistake. Could it be that this caused more blood flow through my head, which in turn caused my symptoms to explode?

    What do you think of this article and my hypothesis? What's your situation with your veins?

    In the next weeks, I will go almost-vegan given that as dr. Esselstyn demonstrated, it's the best diet to remove the plaques from our arteries. I'll try to avoid animal cholesterol as much as possible and see if I notice any changes.

    This is the result dr. Esselstyn got

    [​IMG]
     
  6. djrugg

    djrugg Member

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    Hi Lucio and Boston,

    I hope you guys are doing well. Here’s one individuals experience with ETD that you might find helpful: EUSTACHIAN TUBE DYSFUNCTION
     
  7. djrugg

    djrugg Member

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    Hi Boston,

    How are you doing? Did you try the B5/B6 supplements? Things haven’t changed for me.
     
  8. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Hi DJRugg,

    Sorry for the radio silence, things have been hectic at work.

    I have some good days and some bad days.

    My 'good' is this - no or minimal pressure in the right ear. That's it. My hearing gets better when my ear is not blocked.

    My bad days (like today) is a lot of pressure, significant tinnitus.

    I have load tinnitus in both ears now, have been for a month!

    I am on 25mg of hydrochlorothiazide (diuretic) a day and I think it partially helps. When I am militant about my sodium intake, I do better, the blocked feeling goes away. I am talking 1200mg of sodium or lower.

    I didn't realize, until I went down this path, that a PBJ has 500mg of sodium, a slice of bread -200mg, a glass of milk - 150mg. So you can imagine managing a diet lower than 1200mg of sodium a day. I have lost about 10 pounds (I was 160lbs to start with!). What is discouraging is that, even if I cheat one meal, I pay the price for the next couple of days. In addition, I went to decaf coffee (I used to love my coffee) - 2 cups a day. I loved my beer and scotch - now they are gone :-(

    When I am having a good day, I feel on top of the world and think that I am 'cured'! Only to be reminded a couple of days later. Weekends are my biggest challenge. My family and I loved to eat out! Not now, this has taken quite a toll on my life. I am trying to stay positive.

    How careful have you been with you sodium? Try really lowering it for a week and see if your symptoms get better. In addition to sodium

    I don't think the B5/B6 has helped much, perhaps I need to continue longer.

    I will try and be more regular.

    Please keep a log and keep posting updates. Any new doctor's appointments? I have one coming up in 2 weeks. Not sure what if any my ENT will do.

    Has anyone here tried temporomandibular treatment? Any good outcomes? the reviews are mixed.

    Anyone hear from Lucio?
     
  9. Joney

    Joney Active Member

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    I spent over $700 at a specialist dentist who put me through all kinds of tests, only to prescribe a $5,000 mouthpiece and couldn’t specifically say if my dizziness was caused by TMJ. You have to be careful with some of the sales pitches out there. They are all too aware of those of us who are desperate for relief.
     
    • Agree Agree x 1
  10. djrugg

    djrugg Member

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    Hi Boston,

    Sorry to hear about your struggles with sodium. I went through the same thing after my first visit to the ENT back in the late summer after he told me to reduce my sodium intake. I also lost 10lbs from a starting weight of 163lbs. You can buy zero sodium peanut butter and bread that’s around 100mg per slice. I also use zero sodium mustard and other spices to add flavor.

    I’m also on a low carb diet because I think my issue could be due to a fungal infection or mold allergy. I struggle to stay below 125g of carbs per day. I now weight 143lbs. By not using any salt, and cooking my own meals (mostly protein), I can easily stay below 1000mg of sodium per day. But I work from home, so that makes it easier. The carbs are tough for me. I even have to avoid starchy vegetables.

    I also don’t go out to eat anymore, which also is taking a toll on my family life. I try to prepare all of my own meals, so I don’t burden my wife. She already makes a couple of different meals because my kids are picky eaters. I tell them to go out, but they don’t want to go without me. So, we order out from our favorite restaurants and that helps.

    I believe all of this effort along with the Fluconazole has helped. My ears have been mostly open and the tinnitus fluctuates, so I do get some good days. Although this thing is so mysterious that any benefits I’m experiencing could be due to some other factor or disappear at a moment’s notice.

    I have an appointment with my doc this week and a blood test to see if the Fluconazole caused any damage, so I’ll know more this week.
     
  11. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Thank you, Joney. I will definitely bear that in mind.
     
  12. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    DJRuggs,

    Thank you for the update. Looks like you and I are dealing with very similar issues, loud tinnitus (constant), pressure (varying - depending on the day) and hearing (varying - depending on day), correct? You do not have vertigo or severe dizziness, right?

    Ironically, I can manage a very tight diet when I am at work, I can forget about food and focus on work. I struggle weekends at home! I used to enjoy a couple of beers on Friday and Saturday evenings, with good food. Now I have a hard time, just starving and even small infractions I seem to pay the price. But we have to keep our chin up and hope like so many people here and hope this just is just an 'episode' and goes away. Fingers crossed.
     
  13. Megan Henry

    Megan Henry Member

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    I have a very similar story to D.J.. The TMJ specialist I saw was very vague, never gave any straight answers about how correcting my TMJ would help my ears/balance. Watch out and ask lots of questions. I've noticed doctors/specialists will either be very vague, get annoyed with or dismiss you if they don't know. They will NEVER just say they're not sure. The majority of them know you are desperate for relief and will take unfortunately take advantage. Ask for an initial consultation to interview the Dr. If you get bad vibes, you're probably right. Move on, don't waste your time.
     
    • Agree Agree x 1
  14. djrugg

    djrugg Member

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    .

    Yes, very similar except my tinnitus also varies (from very mild to loud) throughout the day along with my hearing and pressure. I also do not have vertigo or dizziness.

    I do miss the beer, wine, and good food. I had a small glass of wine on new year’s eve and I felt the difference later that night. Yes, must keep the chin up and make the most of the good days.
     
  15. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    Hi Megan,

    I must have missed your story. DJay and I seem to have exactly the same issues as you can see. My 'onset' was in early November and have good and bad days. Bad days are really bad! Low sodium and diuretics have helped by very inconsistently. DJay and I share our progress to see if there is anything else we can try. Please feel free to share anything that you have tried that has helped with the symptoms.

    Do you also have pressure, tinnitus and varying hearing loss but no vertigo?

    Thanks,
     
  16. Megan Henry

    Megan Henry Member

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    YES! Mine started back in April of last year with just fullness/pressure and tinnitus in my right ear then proceeded to go into my left ear. I also have 24/7 dizziness (rocking, swaying, feeling as though I'm on a boat). I have head pressure a lot with storms and certain foods (chocolate, wine). I don't eat dairy because I'm fairly sure it makes it all worse which leads me to wonder if fungus is the culprit. My doctor won't prescribe anti fungals as she says they are too hard on the liver. The most effective thing I do is exercise 5x week, keep a clean diet. I tried a couple months of ozone therapy and that seemed somewhat helpful. Nothing else really helps to be honest. Lately my hearing has been cutting out very briefly (seconds). Always comes back thank God.
     
  17. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    How is everyone doing? Over the past 10 days, I've had 6 good days (moderate to loud tinnitus in both ears but very low pressure in my right ear with improved hearing) and 4 bad ones (louder tinnitus on the right ear, moderate to high pressure/pain with poor hearing). I have them in bunches - 3 good, 2 bad. I have stayed with same diet - low sodium (< 1500 mg). I just don't know what triggers them. I always wake up with the pressure on bad days and they get worse. When I have no ear pressure, I feel on top of the word and bad days, like today, I am positively depressed! I am so frustrated. I am seeing my ENT after 10 weeks on Monday, I will let you know how it went.

    I hope everyone is doing better. Let us know how you are doing, if nothing else come here for a good vent!

    Take care.
     
  18. djrugg

    djrugg Member

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    Hi Boston,

    I’m happy that you’re getting some good days. Some is better than none. I completed my course of antifungal medicine. Blood test was normal, so at least no damage to my liver from the Fluconazole for now. It did open up my bad ear. So, I had many more good days than bad. However, my ear is blocking up again 10 days after finishing the medicine. Very frustrating! My doc doesn’t have any answers either. I am using a facial steamer and that helps. I’m also maintaining a low sodium (~1000 mg per day) and low carbs (~150g per day) diet. My best to everyone!
     
  19. California Sun

    California Sun Active Member

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    Overall, I have been doing better the last several months. Unfortunately still having days where I have that horrible blocked, pressure, muffled feeling with hearing way down. Some days I have a lot of tinnitus but no other symptoms, and some days feel completely normal with only minimal tinnitus. For the most part, the bad days coincide with weather/barometric changes, but last week had 3 really bad days that that didn't seem to be brought on by anything in particular.
     
  20. Boston Pilgrim

    Boston Pilgrim New Member

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    Boston
    California Sun - good to know that you are having some stretch of good days. The weather changes seem to bother me as well. I am still trying to figure out what sets these things off!

    DJ- I feel your frustration. Last evening things took a turn for worse. My right ear clog and tinnitus got way worse and I started to feel queasy in my stomach and some light dizziness. Woke up this morning feeling as bad I have felt in a couple of months - severely blocked right ear, loud tinnitus in both ears, upset stomach and feeling run down. I have done nothing different this past week, why this onset I have no idea. This feeling is just awful. I have not tried a steamer, if that helps I am going to try it.
     

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