1. Get our daily digest email where we email the latest new topics from our Strictly Health forum to keep up with the latest developments! Click here to subscribe.

New to this...

Discussion in 'Your Living Room' started by JdCee, Mar 18, 2024.

  1. JdCee

    JdCee New Member

    3
    0
    1
    Jun 1, 2023
    I'm sorry, I'm going to ramble...Was diagnosed with Menieres about 18 months ago - both ears, but worse on left side according to the ENT. Some hearing loss, but to me seems minimal so far. Constant tinnitis in left ear (avg 7 on a scale of 1-10, occasionally pulsing up to 8-9 briefly) - sometimes heard in the right ear but less volume. Vertigo and nausea are what caused me to visit the ENT. I am lucky/blessed as both vertigo/nausea and usually mild, but near constant and annoying. When I see someone on the forums talking about "fullness in the ear," what does that mean? Like completely clogged feeling? With me, it is the occasional sensation that water is draining out of my ear and last only seconds. Have tried steroids in the ears which lessened the vertigo but not the nausea. Take Meclizine as needed. Take a diuretic, which doesn't seem to help with anything. My nausea is mostly at night when sleeping. It that typical? Usually know when an episode is coming on as tinnitis volume increases. I have seen two different ENTs and have found that neither really seem to have any grasp on the disease. As I said, I am lucky that symptoms are mild compared to what I read from others on this website. It it always the natural course of the disease to worsen, or can it stay about the same until the end?
     
  2. Steven Wm.son

    Steven Wm.son New Member

    16
    2
    3
    Feb 23, 2024
    First, know that this disease affects each person differently, with many over lapping issues shared among us.
    The "fullness" I experience is just as you said---a clogged feeling, sometimes with popping and crackling when you blow your nose. I have never had a feeling of anything draining, though.
    I am on Meclizine as needed but I take Zyrtec and Singulair (tabs) at night for allergies.
    I was only nauseous when I had vertigo the first few times, almost 6 years ago now. So I can't speak to that. Perhaps you are eating late? Or need to have something in your stomach? Just a thought. Does vertigo enter into that nauseous feeling?
    It's interesting that the tinnitus is a precursor. Mine just buzzes along. This was a "Doable" condition until I began having stronger and more frequent vertigo "spells" and in Dec. 23 I had two drop attacks---fell to the floor with zero warning anything was happening. This is when my local ENT and PCP began to LISTEN to me. Currently on Nortriptilyne in an off label use. It's working well, but I often feel like an attack "could" happen, like a sneeze that doesn't show up.
    I am scheduled to see a specialist in May (the earliest I could get in.) There are people here who have had it go way and return, and just go way. It's so hard to tell what will happen. My advice is to ask for a referral to see a specialist who deals with Meniere's all the time. I like my local ENT, but they never seemed to take it seriously. I'd love to live without any symptoms if possible, so I am willing to pursue it.
     
  3. JdCee

    JdCee New Member

    3
    0
    1
    Jun 1, 2023
     
  4. JdCee

    JdCee New Member

    3
    0
    1
    Jun 1, 2023
    Hi Steven - like I said, I am blessed not to have the severe symptoms that many on this forum have. The night time nausea is annoying but not debilitating. Usually doesn't start up until at least 2am regardless of when or what I last ate. Usually an early dinner around 5pm and maybe a light snack around 7pm, if at all. I had a full-on vertigo attack about 20 yrs ago and know how bad that is - remember literally bouncing off the walls and being nauseated on that one, doc said that one was likely caused by a medication and hasn't happened again at that level. What I have now is just mild to sometimes moderate lightheaded feeling that is annoying but tolerated. I don't doubt my original ENT's diagnosis about MD. At that time the dizziness and nausea were not severe (or debilitating) and steroid injections into the inner ear calmed both symptoms way down. However, the affect on blood sugar levels was significant - so much so that I declined more injections offered by the next ENT that I visited. The second ENT did a head MRI and prescribed a diuretic-type pill and reduce fluids in the inner ear. It did nothing. This ENT seemed to not really have a grasp on the MD world and was more interested in sending me to a physical therapy clinic for balance issues. From his emphasis on the therapy, I was fairly certain (along with other persons experiences with him) that he had a financial interest in the therapy clinic. One visit to the therapy was all I needed to determine it was a waste of time for my situation. You are correct about ENTs. Seems that they specialize in the run-of-the-mill issues and only remember a textbook page on the subject from med school - not really all that tuned in to MD issues. Not where the money is. I am seeing a new ENT about an hour away next week and if I find that this one is not knowledgeable, then I will seek a specialist at Vanderbilt University Hospital in Nashville. Enough rambling from me, and thanks for the words.
     
    • Agree Agree x 1
  5. apenultimate

    apenultimate New Member

    7
    0
    1
    Mar 23, 2024
    Hi JdCee,

    My experience with the tinnitus is that it did happen only once in a while, like you, right before a vertigo episode. But, after about 5 years of that, the tinnitus is now constant and is not related to vertigo attacks (at least in any noticeable way). I only have it on one side, however.

    Never had nausea while sleeping, although I do notice that my tinnitus can definitely get louder while sleeping. I'm used to it now, and can sleep through it without any issues--but in my dreams or half awake state, I'll mentally note to myself that my tinnitus is really loud and wake up remembering it.

    It sounds like if your doctors have tried the diuretics and ear steroid injections that you're pretty far along. I only had that stuff done when it was debilitating and I couldn't survive without Meclizine.

    As I stated in the JOH forum, the lemon bioflavinoid supplements in that regimen helped with my vertigo nausea, and the vinpocetine helped with my vertigo. I've only taken Meclizine about 5 times in the past 2-1/4 years while taking the vinpocetine, and unlike the Meclizine, the vinpocetine never makes me sleepy. Might be worth a try--although it seems from the discussion over there that it does not help everyone (it helped me after the first pill, just so you know).

    Final note--my Meniere's always gets worse when allergies are worst outside (hayfever, etc.). It's not the sole cause for sure. Caffeine, alcohol, and high salt meals can also make it worse. If you're regularly eating/drinking those items, it might pay to cut them out for a month and see if you improve.

    Please note, I'm just a Meniere's sufferer, and not a doctor, so do your research yourself before doing any of what I suggest here. You should not take vinpocetine while pregnant or before you go into a surgery or if you already take blood thinners, because it does have something of a blood-thinning effect (closer to aspirin level than warfarin level).
     
  6. Hickspanic

    Hickspanic Member

    41
    6
    8
    Jan 31, 2022
    • Yes I frequently experience the water drip part of this illness, usually when I lay down at night, also a popping/pinging sound when my ears feel "full"
    • Diuretics have done nothing for me, so I drink lots of Jamiaca tea, high Vitamin C, its a natural diuretic.
    • One doctor said it is Menieres, one says it's BPPV or PPPV or Vestibular Migraines or........you get the point. It's idiopathic and seems to me that they are giving it their best "guess." I use cannabis for my nausea and for sleep. CBD may help a bit. It's the retching that I hate the most, along with the nausea and always off balance feeling, fatigue and the occasional nystagmus.
    • Try diet experimentations. For me I try to eat 80 percent plant based, low sodium, no processed food, no caffeine, alcohol, added sugar etc. It's helped me a bit and I'll take any bit I can.
    • Find what helps you, symptoms and triggers vary from one to another.
     
  7. apenultimate

    apenultimate New Member

    7
    0
    1
    Mar 23, 2024
    Hickspanic, I mentioned this in another post on the JOH thread, but the first supplement I tried was the lemon bioflavinoid (still available at nutritionexpress.com), two 700 mg capsules per day, one in the morning, one around dinner time.

    There are other folks here who say it does nothing, but the one thing I noticed, and it was the only change I had made, was that my nausea and vomiting when having a vertigo episode disappeared while taking that. I was vomiting on every episode I had, and then for the two months only taking that, the nausea disappeared.

    Might be worth a shot. If you have tried the JOH regimen before, and you have already tried it, I'd ask if you recall your nausea was less while taking it?

    Wishing you the best!
     
  8. Hickspanic

    Hickspanic Member

    41
    6
    8
    Jan 31, 2022
    Ive never tried the JOH regimen, to be honest I have read it, but fail to understand what it is, what the pills are. what the long term effects are etc. Im trying to use Whole Foods as my medicine. I haven't had a vertigo attack in over a year, but feel constant off balance light headedness. Those symptoms have abated after my diet change. I have more decent days than bad days now.
     

Share This Page