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Really would appreciate some advice/insight- is this Menieres?

Discussion in 'Your Living Room' started by CCS, Sep 12, 2021.

  1. CCS

    CCS New Member

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    Sep 12, 2021
    Hi everyone. Okay, so I understand nobody here can diagnose me, but I’m hoping for some input as I begin this journey. I am extremely concerned about this possibly being Menieres because last year I was diagnosed with an extremely rare disease that causes inflammation in my retina, leading to blindness. I’ve already lost a significant amount of vision so the thought of losing hearing too is just ….overwhelmingly dreadful.

    I am 33 years old and a female. Back story-
    Last year around the exact same time I experienced a sudden onset of my eye disease, I experienced a massive increase in sound sensitivity in my right ear. Alongside, I just felt really crappy, foggy, had brain zaps, just generally unwell. My retina specialist was fully aware of all my symptoms and ordered an MRI brain/orbit and everything came back normal so he chalked it up to a migraine.
    fast forward to about twelve days ago-
    I woke up around 5 AM with the entire room spinning. I have never experienced anything quite like that before (except after drinking tequila, which I no longer do) and it only lasted for a few minutes, if not less. That whole day I felt really crummy, sluggish, dizzy intermittently, and started to notice the sound sensitivity I experienced a year ago was back. Next morning- same thing, super dizzy. I connected it to sleeping on my left side, so for the past week I’ve made sure to sleep only on my back or right side and alas, no more vertigo in the morning. I ended up seeing my primary (virtual appointment so none of the clinical tests for BPPV were done) who suggested I have BPPV… which I was a little surprised about considering the noise sensitivity I was experiencing isnt really characteristic of BPPV. I do not have any tinnitus, I have maybe very slight congestion in my ears- but my hearing feels completely normal. Again, it’s been about 12 days and the dizziness hasn't subsided (morning vertigo has as long as I don’t sleep on left side), I have a bit of a headache on and off, the noise sensitivity (right ear; high pitch noises in particular), brain zaps, ever so slight congestion in my ears (I only notice it when I swallow or yawn and my ears occasionally pop), and just an overall feeling of being unwell. Does this sound like Menieres, BPPV, or a vestibular migraine?

    I’m awaiting a referral to an ENT and a possible MRI depending on what my primary thinks.
    Thank you so much for reading all this- I know it’s a lot. I haven’t been this anxious since I lost part of my vision last year, I really feel for everyone with MD who has to battle this condition on a daily basis.
     
    Last edited: Sep 12, 2021
  2. James_NZ

    James_NZ New Member

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    Aug 30, 2021
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    Sorry you are going through this, i am somewhat similar to you and i have been told by my ENT its MD just in its early stages. I have sound sensitivity to high pitch sounds in my left ear and a feeling of build up in my ear canal. I have had an MRI and its all clear no serious issues and no swelling to my cochlea or sac. I dont get vertigo but i have a swaying feeling 24/7 and feel generally unwell like i am down with a cold/flu this has been going on for 7 weeks. I am currently taking SERC from my ENT but have had no luck with it. Very frustrating and unnerving going from being 100% normal to one day like the flick of a switch being unwell.

    Hope you get some answers soon
     
  3. CCS

    CCS New Member

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    Sep 12, 2021
    thanks so much, James. I finally got a referral to an ENT and they have no availability until November 22. So frustrating! Along with your feelings of fullness in your ear- does your sound perception seem any different? I read somewhere that MD symptoms typically don’t last weeks… and when a patient is experiencing a really long spell that a vestibular migraine or MAV should be considered. What are your thoughts on that? I’m really sorry you’ve been going through this for the past 7 weeks- that’s a really long time to be feeling so miserable. Today is week two for me and I’m at wits end.
     
  4. James_NZ

    James_NZ New Member

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    Aug 30, 2021
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    Yes same for me, cant get in to see my ENT till November due to lockdown we are in at the moment...yes when I am an environment that's noisey or if my kids start getting loud my hearing sounds like a distorted speaker. I agree I dont fit the typical mold of MD but because the inner ear is such a tricky thing as soon as you show any symptoms that dont offer an obvious source you get lumped in the MD category. When I discussed this over the phone with my ENT I was told its because I'm in the early stages and as the disease progresses as it does I will get more and more of the MD symptoms. I'm constantly exhausted each day and I feel my issues are related to sinus and eustachian tube as I'm always having to adjust pressure in my middle ear. The pressure I feel is around my drum and middle ear rather than inner ear like most MD sufferers feel. It's a very tricky thing because it can be a number of different ailments, I'm going to get neck xrays done next week with a chiropractor because I've read lots of similar people suffering symptoms same as MD have found relief from neck adjustments if they have issues here. I have also read it can make things worse! But it all comes back to figuring out your triggers and what brings you relief. Just a path of trial and error from what I understand.
     

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