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Non-vestibular dizziness

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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

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  • Terry6872737
    Terry6872737 blueberry-pie

    Posted

    Sounds like inner ear to me. I have been suffering the same symptoms, though much improved now, for 22 months. Look up vestibular-ocular reflex. You will see most of the symptoms that you describe there. Vestibular rehabilitation therapy will help
    • blueberry-pie
      blueberry-pie Terry6872737

      Posted

      Thanks for your comment. I have had my inner ear checked and undergone numerous and extensive balance tests and they're all clear. I've also had vestibular physio, which helped to a certain extent, but there was no specific trigger point so I have general exercises. 
    • Terry6872737
      Terry6872737 blueberry-pie

      Posted

      I am sure that you have all of the confidence in the world in your traeting physicians and I certaily hope they are correct.  I offer my comments as something else to consider since "Non-vestibular Dizziness" also has a root cause.  i.e. medication, aging, restricted blood flow to the brain, orthostatic hypotension, arteriosclerosis, and I'm sure there are others.

      The information that I note below is from the Vestibular Disorders Association, VEDA, website.  Labrynthitis involves loss of hearing and vestibular neuritis is inflamation of only the major vestibular nerve.  This inflamation causes many symptoms and can be hard to properly diagnose.

      No specific tests exist to diagnose vestibular neuritis or labyrinthitis. Therefore, a process of elimination is often necessary to diagnose the condition. Because the symptoms of an inner ear virus often mimic other medical problems, a thorough examination is usually done to rule out other causes of dizziness, such as stroke, head injury, cardiovascular disease, allergies, side effects of prescription or nonprescription drugs (including alcohol, tobacco, caffeine, and many illegal drugs), neurological disorders, and anxiety. (the later being Non-vestibular Dizziness)

      Symptoms of viral neuritis can be mild or severe, ranging from subtle dizziness to a violent spinning sensation (vertigo). They can also include nausea, vomiting, unsteadiness and imbalance, difficulty with vision, and impaired concentration.

      The sensory information provided by both ears is normally symmetrical. Signals coming from the left ear correspond with the information provided by the right ear. Thus, if the vestibular organs in one or both ears are not working properly, the brain receives conflicting signals about movement, resulting in dizziness/vertigo.

      A disrupted or impaired VOR can result in abnormal nystagmus, an excessive to-and-fro movement of the eyes, and oscillopsia, where objects appear to bounce because they do not remain fixed on the same point on the retina.

      Dizziness is a symptom that is real but is not observable by your doctor. In order to diagnose a vestibular system disorder, your doctor must rely on signs that he or she can observe, such as abnormal eye or body movements. In the early stages of many vestibular disorders these signs may be absent or present only weakly or occasionally. As a result, your doctor may not be able to easily determine whether your dizziness is being caused by a vestibular disorder.

      A person with a vestibular disorder may also experience photosensitivity (discomfort with bright light) and other vision problems such as: intense discomfort with flickering lights, particularly fluorescent, sodium, or mercury vapor lights; moving objects; rows of similar objects, such as in grocery store aisles or lines of text on a page; or busy, high contrast patterns, such as polka dots or sunlight filtering through mini-blinds. Environments with a combination of fluorescent lighting and busy patterns or moving objects are especially problematic which is why shopping in large stores may be very difficult. Even environments with subdued décor can be fatiguing if frequent head movements are required, such as when a person converses with others at work or at a social gathering.

      Just something to consider.

  • michelemuffin
    michelemuffin blueberry-pie

    Posted

    Hello. I can sympathize with you and what your going through. I too have dizziness everyday but is not related to my ears or my brain cause I had an MRI done and ears checked by an ENT and all was clear. I have high blood pressure a d am on medication but since I have been cutting back on my sodium intake and drink nothing but water my blood pressure has been in normal range. I was diagnosed with anxiety 2 months ago and was given sertraline (Zoloft) and it has helped with anxiety attacks but the dizziness is still there. I wanna go back to work but can't with all this dizziness so I don't know what else to do. Hope to hear from you soon.
  • Gilly_flower
    Gilly_flower blueberry-pie

    Posted

    Hi , I've been of work now since October 12 th , just got out of bed and wham , dizzy , head spins turning over etc , and a swimmy feeling all day , on movement I just feel dizzy , at the moment I cant stand lighting , just makes me feel worse like I'm going to fall , shopping is a night mare , I wasn't referred very quickly to ent , but now have been treated for bppv , as when they done the test they could tell from my eye movement s , have to have MRI scan , they keep telling me this is common , but why cant the doctors help more if it is , my doctor put it down to anxiety , of course I'm anxious , but only because this is stopping me from doing things , and it's such a horrible feeling , i work in a busy restaurant , and also we have a B and B , I love my job , I have 2 granddaughters , I cant look after on my own , I do charity work , all stop because of this ,, since I had the Appley manovre , nothing has changed really , can only hope after a couple sessions it might help , I'm so frustrated with it all , 
  • respecthealth
    respecthealth blueberry-pie

    Posted

    Hi there. All good comments. I would just like to pick up on rocksolid's point. It is definitely worth visiting your optometrist regularly as we do the dentist. Most of us have these slight  eye phorias, but symptoms can occur if they are uncompensated due to stress or something. The optometrist can measure them and then, if necessary, prescribe prism or spherical lenses or visual training. They can also check other things like eye pressure to see that it is in the normal range and the optic nerve head to see that it is healthy.
  • rocksolid
    rocksolid blueberry-pie

    Posted

    I was diagnosed with Vertical Heterphoria and I have the special glasses and it has helped. I am not cured and my doctor said it may take some time since I have been dizzy for about 5 yrs non stop. Not any eye doctor can check for this so make sure to ask them before going. I also found a forum about wisdom teeth and dizzness and people that have impacted wisdom teeth seem to feel better once they are removed, something to consider.
  • rocksolid
    rocksolid blueberry-pie

    Posted

    Everyday I feel some what drunk. It's really crappy but I have learned to deal with it. I do metatation in the morning and I don't give it a life of it's own. When I walk I feel a little like I am flaoting or the room has to catch up with me a little. It sometimes feel like I am wareing the wrong prescription of glasses or like I am walking through a dream. People don't seem as real to me as they should. I will not let it control me. I have also had a PT work on my SCM muscle which is in your neck. You can look up issues with that as well.
    • michelemuffin
      michelemuffin rocksolid

      Posted

      When I am walking I feel like I'm floating and sometimes when I am laying down I feel the same. I got my anxiety under control by taking Zoloft but now just dealing with the dizziness
  • rocksolid
    rocksolid blueberry-pie

    Posted

    I don't really feel it when I am laying down. Close one eye and look around and see if that helps.
    • michelemuffin
      michelemuffin rocksolid

      Posted

      I will try that thanks. I hope I can find an eye Dr that can do a test on me for vertical heterophoria and go from there.
  • rocksolid
    rocksolid blueberry-pie

    Posted

    I know there is a doctor in NY and MI but there must be others.
    • adbaldw2
      adbaldw2 michelemuffin

      Posted

      @michelemuffin - were you able to find someone in Atlanta?  I am experiencing the same issues and just started my search for a doctor that can test for vertical heterophoria. 
    • rocksolid
      rocksolid adbaldw2

      Posted

      There are very few doctors that seem to be able to check for this. There is one in Michigan and one in NY.
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