Non-vestibular dizziness

Ears, nose and throat
1

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!

2

Look up Verticle Heterphoria, It's an eye condition.

3

Thanks! I will definitely check this out.

4

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

5

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. 

6

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.

7

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.

8

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 , 

9

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.

10

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.

11

Did u have dizziness everyday ? Did it feel like u was floating ?

12

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.

13

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

14

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

15

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.

16

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

17

I am in Atlanta ga so I guess I will have to call around. Thanks

18

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.

19

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.

20

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