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My diagnosis update.. confused!

Discussion in 'Your Living Room' started by Megan M, Nov 18, 2019.

  1. Nov 18, 2019 #1
    Megan M

    Megan M New Member

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    Nov 2, 2019
    Hey everyone,
    Just giving an update on my diagnosis or lack of. My ENT was unsure if it’s Hydrops or AIED or progressive hearing loss since childhood.
    I went to a rheumatologist in NYC at the hospital for special surgery. She ran very thorough bloodwork and by her exam and my symptoms she has ruled out AIED. I’ve also been in remission with my RA for 2 years and my inflammation factor is almost non existent. I’m off my RA meds for 4 weeks now bc they’re in the aspirin family- advised by my rheumatologist.
    So back at the ENT today and he’s now sending me to another inner ear specialist since he believes it’s Hydrops. I go early December for this appointment.
    Here’s my confusion and maybe you guys can help, this group seems to know so much and I’m so thankful to have found it.
    I have hearing loss in both ears, worse in the right. Worse in high frequencies. I’ve never noticed it so they believe I do have progressive hearing loss since child hood that may fluctuate with the Hydrops. I never ever sense my hearing fluctuate. I see people in here discuss having attacks, what exactly do the attacks entail?
    So basically I’ve never noticed I had hearing loss, which is crazy bc it’s moderate in both ears and I don’t notice any hearing changes.
    I suffer from bad TMJ (just found out) which is getting treated by my dentist and my ears do feel full at times, especially in the morning if I was grinding heavenly, worse with allergies- but mainly they pop non stop, every day and feel better after popping or crackling.
    My tinnitus and ear pressure or popping is worse with allergies+worse when my nightly grinding is bad.
    Last week the tinnitus and popping was almost non existent but so were my allergies. Today I wake up and my head is full and it sounds like a tea pot is going off in my right ear ugh!
    I’m at a loss. No one seems to have any idea what’s going on. I’ve never been depressed but started therapy last week. I’m a mess over this and just want to get better. The anxiety is non stop.
    So I’m hoping someone may have good insight or may have went through a situation similar to mine. Also any recommendations on what to ask the second inner ear specialist that I’m seeing.
    Thank you all!!!
     
  2. Nov 19, 2019 #2
    Clare

    Clare Active Member

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    Mar 31, 2018
    For me, an attack is a sudden episode of vertigo, which means the room is spinning around me and I cannot safely remain standing, and I am nauseous and likely to vomit unless I can take rescue medication quickly enough to keep it down. An attack lasts from 1 to 4 hours or more, is terribly exhausting, and takes a couple of days to feel mostly right again. I carried low-dose Valium as a rescue with me for a decade until I finally had a labyrinthectomy last year which stopped the attacks permanently. Life is so improved without the threat of incapacitation.

    It sounds like you are juggling plenty of health stuff, and it's good you're getting some support while you're in this state of limbo and frustration. I've found therapy helpful, too.

    For me, teeth grinding tells me I'm anxious over something. That could be some personal event, or a fear of further Meniere's deterioration and what it meant for my future, thus becoming a circular cause and effect. Anxiety causes hormones to produce cortisol, which in turn messes with all kinds of body parts, including skin rashes, joint pains, headaches, allergic reactions, and probably inner ear function. I was always most susceptible to an attack when stressed or anxious, and part of my Meniere's management has been to live a low-stress lifestyle. That took job changes and lifestyle changes, and has worked well for me.

    You say your hearing is worse in high frequencies, and you mention your ears feeling less full after popping. Both of those are not in my experience or what seems to be typical of Meniere's. I don't know exactly how hydrops is defined. What you describe sounds atypical of Meniere's to me, and perhaps a second opinion might be helpful and insightful for treatment options.
     
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