Labyrinthitis – A wicked wind blows

(Though I normally post about all things photographic, I wanted to shed some light on a little known, but common illness called Labyrinthitis)

It’s March 2014, and we’re on a family holiday near the beach. The town is rustic, but certainly not lost to time. It’s not tourist season, so the main street is empty. A popular cafe does a good business on the corner; achieving success quietly with a menu more sophisticated than most, and betraying the big-city origins of its owner and chef.

It’s been windy and cold for days now, and I still have this annoying virus; mild though it is. Despite this, I’m in town to grab a pizza for dinner. It’s getting late and the sun is setting, so I order our food and take the opportunity to make some photographs of some of the old houses in the town.

With warm pizza box in hand, I cross the street and walk to the car. Just as I open up the car boot to pop in my camera gear, a sudden dizziness comes over me. It feels a little strange, but I put it down to the cold wind having tickled my ears for days. I’m sure I remember my mom saying something about getting dizzy because of too much wind in her ears. I’m not sure though…

As I drive back to our holiday unit, the dizziness becomes worse. I’m sure this is vertigo now. Everything is spinning and it takes a lot of concentration to control the car into the driveway. I get out of the car and hold onto the wooden railings on the way up to the doorway. I feel like I’m on a wild ride at a showground, with the nausea to prove it.

As I enter the unit, I put the pizza down on the kitchen bench as best I can without falling over, and make my way giddily to the bedroom to lie down on the bed. It’s really scary now. My eyes are darting from side to side as I try to get my bearings in space. What’s happening to me? Is there something wrong with my brain? Have I had a stroke? I think these things as my family ask me what’s wrong. I try not to make too big a deal of the situation and tell them to go and eat.

Thirty minutes later the nausea has decreased and the vertigo is subsiding. I’m still dizzy, but the worst symptoms are over.

Its the next day and only a slight dizziness remains and a strange feeling in my head as I turn it. I can still drive, even though I probably shouldn’t. I think it’s likely an ear infection of some sort. It makes sense.

A few days later and the dizziness has gone. There’s no vertigo, but I still feel nauseous when staring too long at a computer screen or watching something scrolling up and down. It’s time to visit the doctor.

Labyrinthitis and vertigo

bykst / Pixabay

The Doctor says…

I tell the doctor my symptoms, and he tells me I have Labyrinthitis.

“I haven’t heard of it. What is it?” I say with a puzzled look on my face.

“It occurs when a virus enters the labyrinth of the inner ear and causes swelling in the nerves. It can affect balance and mood.” Sounds like he’s reading right out of a textbook.

“How long will it last?”

“After an initial bout of vertigo, the symptoms usually disappear in 2 to 8 weeks. There’s nothing to worry about.” Doctors always sound reassuring when they say things like this, but I’m going to research more about it anyway.

Here’s what Wikipedia has to say about Labyrinthitis:

“Labyrinthitis, also known as otitis interna, vestibular neuronitis and vestibular neuritis, is a problem of the inner ear. It results in vertigo and also possible hearing loss or ringing in the ears. It can occur as a single attack, a series of attacks, or a persistent condition that diminishes over three to six weeks. It may be associated with nausea, vomiting. Vestibular neuronitis may also be associated with eye nystagmus.”

I read all of this, and it seems to make more sense. The respiratory virus I had before the holiday must have entered my inner ear and caused some problems. I still have mild nausea when looking at a screen for too long, but it’s manageable. Also, when I walk I have to concentrate more than normal to walk in a straight line. It’s a strange thing this Labyrinthitis…

More than Labyrinthitis?

Some months later and I’m back to see the doctor for the sixth or seventh time. Things are much worse. It’s not the nausea or the dizziness now causing problems, but the sudden increase in anxiety. I think I’m also depressed. I look forward to going to bed just so I can take a break from the constant worry and stress. I know what the doctor said, but I still can’t shake the feeling that something else is wrong. It feels so much worse than the doctor’s cheerful textbook description suggests !

For the last few weeks I’ve been in a zombie-like state, just trying to get through each day. I’ve been getting pins and needles in my arms, legs, hands and feet; my neck is unusually stiff; I have headaches that last for days; my legs and arms feel heavy and weak; and my muscles are twitching. I feel like I’m going crazy. Maybe I have something really serious? Maybe the doctors are wrong? Damn this Labyrinthitis !


johnhain / Pixabay

“How are you feeling? Are you still dizzy?” He’s a kind enough doctor really, and is quite thorough in his assessment. We call him Doctor Z.

“The initial vertigo is gone, but I still have to concentrate to walk in a straight line. There are also times when I feel like I’m falling to the left side, especially when near a wall. The other problem is my anxiety. It’s getting much worse and I think I need to go back on Lexapro to try and get it under control.” I blurt all of this out in one speech so as not to miss anything. He frowns and pauses before saying anything, as if I’m going against the expected trajectory of the illness. Maybe it’s all in my head? I hate it when doctors look puzzled like this. It makes me worry even more…

“I’ll write you out a script for Lexapro, but it might also be a good idea to see a Psychologist to help with your anxiety and depression.”

The doctor hands me a short questionnaire to fill out to describe my state of mind. There are no surprises here: questions about suicidal thoughts, sleep patterns, tiredness, energy levels, motivation. I guess it gives the psych something to work with.

Having researched more about the illness on Dr Google, I know that some people suggest seeing an ENT specialist because they know more about vestibular disorders like Labyrinthitis than family doctors or Neurologists.

“Can you also give me a referral to see an ENT specialist?”  He considers my request thoughtfully for a moment and nods his head. I suspect that he can see how worried I am. And besides, I know there are VRT (Vestibular Rehabilitation Therapy) exercices one can do to help the brain compensate for the disruption in balance signals. The ENT would refer me to see a physio that specialises in this if he thinks it necessary. Once again, damn this Labyrinthitis !

Visiting the ENT specialist

So far, I’ve been disappointed in the lack of useful information received on this disorder from the Doctors I’ve seen. Knowing through experience that Doctors often get things wrong, I guess it should be no surprise that talking to them about it is akin to talking to a dry medical dictionary. Labyrinthitis seems to be a disorder that is common enough, but receives little attention. The mechanism of inner ear disruption seems to be known, but knowledge about the psychological and physical symptoms of the illness presents as thin.

I’ve been reading theories that the inner ear is somehow linked to our emotional brain, and any disruption can cause depression and anxiety. It seems that in some people, the offending virus causes long-term problems as the brain struggles to compensate for the changes to balance signals coming from the inner ear. In most people the brain compensates fully after 3-8 weeks, but I’m beginning to think that my brain is compensating and then decompensating.

After a hearing test and a few balance tests, the ENT is confident that I have Viral Labyrinthitis. His confidence makes me feel better, but he wants me to undergo a brain MRI scan just to make sure it’s not an Acoustic Neuroma or something more serious. Naturally, this concerns me even more, but I walk out of there feeling buoyed by his assurances. Oddly, my zig-zaggy walking improves almost immediately.

Fast forward a week later, and it turns out there’s nothing wrong with my brain. My confident ENT formally diagnoses me with Labyrinthitis…

In Part 2, I’ll be discussing my experiences with the Psychologist, my state of mind and where I am right now…


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