Chronic tinnitus, dizziness and disequilibrium without vertigo

Ears, nose and throat
1

Hello, I'm wondering if anyone has had symptoms similar to mine, and if so, what sort of diagnosis they received, if applicable?

I've been suffering from dizziness and a feeling of spatial disorientation or disequilibrium for about 4 or 5 months now. I've never had a spinning sensation, but instead it's a floating feeling, like I'm in a dream, or like I'm going to lose my balance and fall over. It's kind of like the feeling you get when you have a cold and your ears are plugged up. I'm also sensitive to light, and actually feel worse when I lie down.

Unlike a lot of people who seem to suffer from dizziness, I have no balance issues whatsoever and can move about just fine -- I just feel "off." A couple months after the dizziness started, I began getting ringing in my ears that was so loud that I could barely hear over it. I also would get a fluttering or popping feeling in my ears. I had a hearing test done by an audiologist and despite the tinnitus, my hearing is perfect. In addition to the ringing and the fluttering, I also have a feeling of ear fullness. My ears don't hurt, per se, but they feel achy and very sensitive, especially around loud noise. I also get jaw pain sometimes.

Over the past 5 months my symptoms seem to come and go. I'll get these "attacks" where the ringing will get extremely loud and I'll feel nauseated, off balance, and foggy headed, almost like I'm having a vestibular migraine. Over a couple of weeks or so, the symptoms will lessen, until the ringing and the dizziness are almost gone. Then, all of a sudden, my symptoms "hit" me all over again.

I've had a CT scan of my sinuses and my brain, and everything came back normal. My GP also checked for any overt signs of neurological issues, like slurred speech, clumsiness, etc, and everything was normal. I was put on meclizine and valium and that made the ringing go away and the disequilibrium a little better. I have no infection in my middle ear or anything like that, but I haven't had my inner ear/vestibular system checked. I have an appointment in a week with an ENT, but I'm so frustrated because I've scoured the internet and I can't find anything that resembles what I have. Can anyone identify with any of what I'm going through?

2

First off have you looked at the Veda website. Vestibular Disorders Assoc? The have a mine of info on all things dizzy, incl tinnitus, and the diff types, and nuch much more. The also have a FB page, but the website shld be yer first visit. highly recommend to everyone on here 

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3

It may possibly be what I have - cochlear hydrops. There isn't much about it on the internet unfortunately but basically it is when your cochlear is full of fluid. Ask the ENT about this condition

4

Hi muimui I've just sent you a private message

5

Consider your neck as the problem. Look up SCM muslce issues and SCM trigger points to see if that make sense. The SCM is a very important muscle and when it gets messed up it can cause a lot of what you are feeling. You can also have an ENT do a VEMP test to check your middle ear and the SCM muscles.

6

Your symptoms appear to fit what you suspected as Vestibular Migraine.  This would explain the normal audiogram, even though you have ear fullness and tinnitus.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

7

Hello- I’ve been having very similar issues. Especially the tinnitus. We’re you by chance exposed to any steroid medications? Even topical such as hydrocortisone cream? Or did you by chance take any antibiotics? Mine began from a corticosteroid medication. Still going on after 4 months. I’m hoping it’s gone within a year. 

8

Hi muimui

I totally know what you mean i have the exact same thing .my left ear feels full with hearing loss and tinnitus..ive had this for about 3 month now was given steriods (didnt help) antibiotics (didnt help) and nasal spray(also didnt help)i went for a hearing test and eas told i have unilateral tinnitus with hearing loss......im now waiting for an app with an ENT specialist ..like you i dont get spinning sensation its more a floaty feeling ive also figured out that when the tinnitus is loud the dizziness gets worse..i have never collapsed but have been so close to it at times ( a lot of times) ive actually decided to go private to have an MRI scan i cant be waiting for the NHS to send me for 1 (my scan is due nxt week)i also take diazipam 2mg which helps to a degree although my doctor daid diazipam wont help ( luckily i get diazipam for my anxiety)which if im honest is making this whole situation worse..good luck with your ENT app ..let me know how you get on yeah

9

HI, I Can relate to a lot of your symptoms. In 2005 I experienced a lot of weird dizzy moments dead centre in my forehead just between my eyebrows. One day it almost knocked me off my feet. Up to that point my eyes and head were always heavy and ached. 

Like eye strain. 

STRESS AT WORK

TOO MUCH COMPUTER WORK

my neck just was so tight I couldn’t move my head properly. That escalated to getting glasses. Then I went to USA for the first time on work related agenda with a busy schedule. Up and down lifts, in and out of buses etc etc for 10 days and partying at night. About 8th day in I had horrendous nausea and walked like I was drunk and put it down to hangover dehydration. Then it wouldn’t go away and when I walked down longgggg corridors in hotels or into shopping malls it was like I was walking on a water bed all the time. I spent a full day in George Washington hospital emergency getting rehydrated and electrolytes were dangerously low. 

When I got back I was put in four medications per day and still suffered the dreadful symptoms 24/7 for 7 to 8 months. Walking about like drunk and nauseous. Funny thing I could drive. I wasn’t dizzy just weird walking on water like in a lift permanently. Fast forward  11 years with sporadic attacks I finally was told vertigo and motion sickness ‘ and I would have to manage it. When it goes away it’s great. 

I notice the following:

Stress and anxiety are def triggers for me.

Computer work a biggie

Using phone a lot another biggie

Hangover and tiredness huge issue

Recently I had uveitis in the eye which brought it on like the first big attack, once it was treated the vertigo went away.

I have another attack now brought on by stress and anxiety as I started a new job recently and had information overload in two days of induction to the point I either fell asleep or passed out!

Now I’m a week in on my induction and I’m managing symptoms with relaxation, hot baths and  lots of fresh air. 

I’m sitting here now with very light head dry eyes and a throbbing headache. I’m having ringing in ears now and again.  I know that if I were to go to Tesco’s I would feel my legs go heavy as if disassociated from my body.

It’s horrud to have to manage this especially when it had been gone over 10 years. I had CT scan a few weeks ago but no results back yet. 

I can only say that by knowing someone else has described what I am feeling helps xxxxx