1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Non-vestibular dizziness

Posted , 12 users are following.

blueberry-pie
blueberry-pie

Hi there. I've been experiencing dizziness symptoms, starting with symptoms similar to labyrinthitis, for 13 months. After several doctors aapointments, ENT tests, CT scan, MRI and a visit to the neurologist, I was told that there was nothing wrong with my ears or my balance. This is something the neurologist says is common and has been seen for decades but there is no official diagnosis or treatment (even though, that kinda seems like a diagnosis).

I was told it's called disequilibrium because I feel 'out of sorts' all the time and lots of things make me feel unbalanced, disorientated, 'dizzy', I can't always see or focus that well and if i experience 'sensory overload' (too many visual, auditory signals) then my brain just gives up and I end up lightheaded, weak and have 'blacked out' on several occasions (though not lost full consciousness yet, thankfully). If I am tired (dizziness makes me tired which makes the dizziness worse - go figure) then it's game over. I struggle to concentrate for long periods of time, I hate supermarkets, bright screens and lots of discordant or high-pitched noises.  The only symptoms I don't have are the head spinning, room spinning sensation and the marshmallow floor feeling of labyrinthitis. 

Annoyingly, I had a few days after my initial symptoms where I felt fine and there was no problem. Making me think that it was just labyrinthitisi and it would all clear up. 

After being told that 'it might just go away or it might never go away' (thanks!) I needed to find out more. Despite this being 'common' I have yet to hear about or meet anyone else who has this problem. 

Some further internet research calls my problem 'non-vestibular dizziness'. 

Now i'm looking for anyone else with these symptoms to find out how they experience them, how they cope, and how long they've had this problem. If it's so common, there has to be someone else out there!

0 likes, 23 replies

23 Replies

Prev
  • dionne35371
    dionne35371 blueberry-pie

    Posted

    Hi,

    After I received I think about 10 weeks of balance classes once a week, it began to improve and the dizziness did get better. I wouldn't say that it completely went away and like you I sometimes still feel it come on when I am tired especially and I literally have to sit down or rest otherwise it will get worse. At my worse time, the supermarket was the biggest challenge for me, I avoided it at all cost. I remember one occasion I was with my 3 year old going to Tesco and after being in there for about 10 mins I had to literally put down my basket and leave. A the Physios I was seeing and my balance classes told me that I should be pushing myself to do the things I was afraid of the most, so that's how I dealt with that.

    So I am like you still looking for answers and solutions to this problem. I have recently left my last GP and am in the process of registering with a new practice because I am keen for a second opinion and interested to see how another doctor would investigate my symptoms.

    When all this started I was more than sure that Onhad labrynthitis as well as I had a lot of the symptoms and have had trouble with my ears for a few years now. My ears are always very itchy and I have itched one before and needed up piercing a hole in my eardrum. However my gp said that my ears look fine and that I don't have labrynthitis so I ruled that out but now I'm thinking is it something to do with my ears and dos maybe my GP miss it?

    I will keep you updated with my next journey with my new practice.

    • Terry6872737
      Terry6872737 dionne35371

      Posted

      The best doctor, if there is one available near by, would be a Neuro-Otologist.  They specialize only in inner ear issues.  Neuritis is not visible from tests and is a likely cause of dizziness that cannot be attributed to other issues.  Most on here have been passed from doctor to doctor looking for a solution.  I have suffered for 22 months but, like you it has gradually gotten better.  I'm not sure that it will ever totally resolve but, I can function for the most part.  Stores, especially large ones with lots of product on the aisles and high ceilings dealt me misery for months.  That resolved a few months back and I no longer have to avoid them.  Exposure so that the brain relearns what the signal means that it gets from a damaged vestibular nerve is what made the difference for me as well.  One thing that I did learn is that it is not a time or two of exposure but, months.

      I would be curious as to any information that you get from a new doctor.  Keep us posted.

  • emma93780
    emma93780 blueberry-pie

    Posted

    It's quite relieving reading about someone with similar symptoms to me, I mean it's not nice to hear someone else suffering but it helps to know I'm not the only one going through this!

    I to have had numerous tests & scans and they are still none the wiser as to what is going on, at first I was told labrythitus then it was migraines then some type of neuralgia and then vestibular neuritis none of which for my symptoms, I have dizziness 24/7 or light headedness some might say as I don't get the spinny sensation it's just a sense of being off balance which makes me feel heavy and starts me panicking, I've passed out once with this feeling and feel like it's going to happen again, I hate going out or if I do I don't like going on my own or to the supermarket I just can't handle it! I've been told it could be stress, anxiety etc which some part yes as its making me feel stressed out, I haven't s clue what's going on and neither do they but all

    I know is I woke up one day and felt like this and have been trying to find out why ever since, I'm convinced something is going on somewhere in my neck, I have a lump that I've found but not sure if this is it I'm waiting for a neck scan to see! But the unofficial balance feeling is horrendous can't do anything without holding on to something x

    • anne05147
      anne05147 emma93780

      Posted

      Hi Emma, I am into my third year of learning about this condition.  I have a bulging neck disc that I'm convinced is part of the problem, I have confirmed BPPV and i also have been diagnosed with silent migraines.  I am now much improved compared to where i was when all this started. I think my brain has gradually adapted to the 'spins' and overall compared to where i was when this first started i am much improved, with the occasional day when i have a relapse but never back to the point where i was when it first started, crawling around on the floor.  It takes time for our brains to adjust and as i am now 58 it may have taken longer for me to make this transition.  Hopefully if you are younger it may take less time, i think there is hope for all, but it does take time.  I don't think i will ever be completely cured, but i am so much better.  I also take nortriptyline for the silenet migraines that were causing me visual vertigo and that has also made a big difference.  I hope to come off them and the consultant says may be in a few months time when my brain has healed more.  Best wishes.
  • pennie_28808
    pennie_28808 blueberry-pie

    Posted

    I am so glad to hear that how I feel may have a diagnosis. I have been told they don't know what is wrong, I have struggled to cope for the last 2 years I am scared to have my grandchildren and concerned about continuing my guiding. I will speak to my GP.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.