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Alone...confused and waiting

Discussion in 'Your Living Room' started by bizzie, Apr 20, 2020.

  1. bizzie

    bizzie New Member

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    Apr 20, 2020
    Hi,
    I just want to say how grateful I am for a place that supports people with this condition. I know people who have it and haven't had to endure the severe vertigo I've seen before though I feel closer to this group than anyone at the moment.
    I think I had one five second dizziness spell when I was 27 (I'm 41) when the lock spun, and then a few seconds-long when I turned over in bed sometimes. It felt as if something was tumbling in my head. I have always had tinnitus, but in 2018 there was a 24-hour period the ringing was very high and shrill. In 2019 (Nov.) I had a cold for 2 days. This year I rolled over in bed and felt the tumbling, like the bed had given way, but when I sat up, things were still spinning inside. I went to work, feeling as if the floor was rocking and I'd feel the weight shift in my legs. I started shivering and felt as if I would fall over if I read anything and that my body was falling, tilting and flipping especially when I closed my eyes. Then it felt like I was spinning or moving in a spiral when I closed my eyes at night. Went to Urgent Care and was told dehydration, middle ear effusion, eustachian tube disorder. I went to the doctor and had an MRI where they found fluid on the mastoid. It was nothing to worry about, I was told, and that it was a cold and that ENTs don't even want to be bothered unless something has gone on for 9 weeks. (I just passed week 10 last week.) The minute I was dismissed the tinnitus got louder, multiple tones, one like a blowing in my ear, other like a computer fan, one like a clanging pipe, one so high it sounds metallic. The tinnitus was constant, the dizziness is constant every minute of the day and night and didn't respond to Epley when I went to vestibular therapy before the clinic closed due to coronavirus. Most of the time the floor seems tilted, sometimes swirls. The floor feels like a rotating turntable (slow). The walls do more of a slow figure-8 or the movement of those teacup rides, or oscillate back and forth (all slowly) but it always seems like the furniture, the floor I'm standing on wants to "take me somewhere" and I feel insane enough from the tinnitus and constant moving floor/furniture to ask them aloud.

    I haven't been tested for hearing loss, it does feel like my right ear (which has the loudest tinnitus and the blowing/pulsatile tinnitus?)has something in it, but more like tissue than cotton. I feel as if I am pulled and pushed in all directions at all times and going to bed is like boarding a rollercoaster or tying myself to one of those boards people throw knives at. No spinning vertigo yet, but I feel as if I am moving with the room (and I see it moving) and feel the motion in my stomach and sometimes the room just slides and the bed feels as if it is moving downstream. Even when I am asleep and turn over in bed, the bed feels as if it stretches and if I'm really disoriented with my eyes closed I feel them blinking really fast. I asked my doctor if this was labyrinthitis but she didn't bat an eye. She saw some fluid on my eardrum, but said it wouldn't be enough to cause 24/7 subjective dizziness. Along with the dizziness, if it gets really fast like I'm spinning going to sleep, I also get hot, heart pounds, feel uncomfortable and the ear starts blowing.

    I'm not here for a diagnosis. I may not cross the path of Meniere's, but this just has no end in sight and the sensations are getting stronger, though no violent spinning. I needed to share with someone who might relate. I want to wait it out, but I'm in a bad enough place right now to just be waiting for this to go away or for the real story to be revealed. Sorry this is long. I feel kind of isolated living in a small town with a condition that is starting to baffle me and where I cannot go see or talk to a doctor due to coronavirus. Thanks for reading.
     
    Last edited: Apr 20, 2020
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  2. April55

    April55 Member

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    Aug 10, 2017
    I don't post here much but I just wanted to say you are not alone and I have had many of the same sensations without the actual vertigo and they are still very uncomfortable and upsetting. Many others on here are much more knowledgeable than I but I really feel so sorry with everything going on you can't even see a doctor to help you. :(
     
  3. Terrell

    Terrell New Member

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    Sep 28, 2019
    I don't get the vertigo and also have had tinitus my whole life. My best relief comes from massage and posture exercises - being hunched over a computer inflames my worst symptoms. After using my shiatsu massage pillow on my neck, shoulders and jaw i can feel the liquid coming out of my ear. No ones tiggers or symptoms seem to be exactly the same or there would be more consensus. The best is to listen to your own body, try anything non-invasive first to see if you get symptom relief. Some feel it's viral - In my case I feel it's muscular... but to be honest almost everytime I get liquid to release from my ear I get a sore throat... so what do I know. We are all alone and yet we are together trying to solve problems the medical community mostly isn't searching for yet. We all have an opportunity right now to stop everything we normally do and put ourselves first. Take care. PS you have excellent writing skills.
     
  4. Clare

    Clare Active Member

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    Mar 31, 2018
    Here are a couple of websites that deal with vestibular disorders:
    Dizziness-and-balance.com: Disorder index
    Vestibular Disorders Association
    I hope you can find relief soon.
     
  5. jaypr

    jaypr Member

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    Hi you could try the eply manouvre at home https://www.activator.com/wp-content/uploads/Home Epley Handouts.pdf

    I have done it in the past and it has worked. Obviously takes a few attempts over say three days a couple of times a day

    I was diagnosed with menieres in 2005. My symptoms lasted 3 horrible years of rotational vertigo and bouts of six hours at a time vomiting. Anyway after 3 years of that I went deaf in my left ear. I did have success with a couple of things which made life bearable enough to work. They were buccastem to stop an episode in its tracks, serc as a preventative and following the diet recommended in "Heal your headache" by David Buchholz as I had MAV not menieres. Well worth getting a copy. Ignore the title as you can have MAV without a headache

    Best of luck wishing you well
     
  6. Ponx54

    Ponx54 New Member

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    Aug 21, 2018
    Hi there. You can accurately test your own hearing levels free of charge at hearingtest.online. You will need some over ear headphones. It’s important to see if you have a deficit at the lower frequency end as this it typical of MD...it might come and go or get worse over time so test yourself frequently..
     

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