Labyrinthitis: taking it easy, even if it kills me

Tea with honey
It’s been this kind of week.

Anyone who knows me knows how stir crazy I go staying home for long periods of time. Give me an order to stay in bed to recuperate, and I will fight you to regain my independence, even at the cost of my health. I just can’t do “take it easy”.

So, this last week has been quite trying. We went hard and played hard all of spring break, and then just as the day was ending last Friday, it was clear I was losing my voice. Losing my voice is not really a new thing, I’ve been known to lose my voice pretty frequently, but this was different in that I had no other symptoms.

As we were leaving the zoo Friday, my voice had all but disappeared. The next day at the tulip fields, I was reduced to fake sign language to communicate with my family or making them lean in while I whispered. But, I also noticed that I was dizzy and disoriented as well as having problems hearing and talking, so communicating was pretty miserable overall.

But Sunday is when it all went downhill. I woke up and realized the whole room was spinning and I could barely sit up. My whole head hurt and I was so confused about even the simplest things. I woke my husband up and told him I needed him to take me to the walk in clinic. Now, anyone who has ever taken three small kids to a walk in clinic on a Sunday while sick now understands how desperate I must have been.

At the point at which I walked into the clinic, all I was hoping for was some sort of immediate cure. But, my dreams of them draining my ears or just cutting them off completely and me walking out to enjoy my Sunday were dashed almost immediately. An hour later and it was declared that I had an acute dual ear infection, and I was prescribed a dose of antibiotics, some anti-histamine, and some ibuprofen with instructions to “take it easy”.

Up until this point, I naively thought only infants and children got ear infections, but I was clearly wrong. It turns out that if you have ears, they can get infected. And, it hurts much more than I remembered from my own childhood.Soup

6 days pass and thankfully my ears hurt less and I have graduated from hardly being able to stand to just feeling drunk and disoriented 24/7 with a side of hearing loss and a ringing in my ears that comes and goes. But, a call to the doctor confirmed that at 6 days I should feel much better than this, so they suggested I come back into the walk in clinic.

I’m very thankful to my awesome dad who immediately knew something more serious was up with my ears and made me an appointment with a specialist. Sure, the walk in clinic is fine, but since it’s my ears and my hearing, I wanted to go to someone who sees this type of thing all the time. 

The diagnosis: Labyrinthitis

After a quick exam and a few tests it was determined by the specialist that my ear infection wasn’t the standard bacterial variety, but rather a viral infection of the inner ear. This severe vertigo is apparently called Labyrinthitis, a swelling and inflammation of the labyrinth, the part of your inner ear that helps control your balance.

This may sound like a made-up thing, but let me tell you, it’s real. And it’s not fun at all.

It’s hard for me to adequately describe my symptoms so people who haven’t experienced Labyrinthitis can understand, but I’m going to try just for you. Here are just a few of the sensations I’ve had this week that had me feeling like I was possibly losing my mind.

  • The time I was convinced I was walking so slow I was actually going backwards, even though I was keeping up with everyone else walking beside me.
  • The time my cell phone dinged *in my back pocket* and I was utterly convinced it came from the other room. So entirely convinced that I spent the next 10 minutes looking for my “lost” phone until I got a silent notification and the phone vibrated in my pocket.
  • The time I tripped down the front steps because I was carrying a bag and suddenly got disoriented and off-balance.
  • The time I couldn’t make sense of how much time I would have to kill from 2:15 to 2:45.
  • All the times I couldn’t think of the most simple words for common objects.
  • The feeling of swaying even when sitting or leaning against objects.
  • The times I was so lethargic that it felt like all of my limbs were made of cement.
  • The feeling of waking up and not being able to make sense of where I am, what time it is, or whether I’m moving or laying still.
  • The time I used numerous cars and porches to lean against to regain my balance in what should have been a 5 minute walk to school.
  • That time I really had to tell someone to “speak into my good ear”.
  • The days spent so nauseated that the mere thought of food made me feel ill so I spent all day and night laying down.
  • All the many, many, many times I started a sentence and then couldn’t remember what I was talking about or why the room was spinning.

Taking it easy

All of this craziness has left me basically housebound unless I was stumbling my way to the schools to pick up or drop off kids. Other than that, I’ve left the house exactly three times this week – to see doctors, pick up more prescriptions, and then see the specialist. I even turned down a vacation I’ve been looking forward to for months because unfortunately it involved an ear-popping mountain pass and actually holding a conversation or walking without feeling like the world was spinning.

For someone like me, this is a special form of torture and I cannot wait to get back outside. My garden is calling me, my kids are begging to ride bikes, and I just want to go somewhere… anywhere not medical related.

But, it wasn’t all bad. Staying home this much has made for more opportunities for baby to try and walk, since she basically refuses to walk or even stand in public. In the last few days she has gone from only taking 2-3 steps at a time {which she has been doing all the way back to New Years Eve} to sometimes taking up to 8 wobbly steps in a row. I predict we’re going to have a real walker in the next few days and I’m so excited.First steps

My painful ear has also led me to spend some time teaching the baby to use sign language more so there’s a whole lot less screeching to get what she wants. The added bonus is that it’s super cute to see her sign so consistently, and I’m so proud of myself for teaching her even in my foggy state.

I also learned my hearing in my “good ear” is very good. “Good ear” is put in quotes because technically both ears are infected, I just am not having hearing loss in both. Thankfully. But the best news is that much of the dizziness should pass in a matter of days or weeks and I can go back to my normal pace. I cannot wait to leave the house and go on an adventure or 20 to make up for all of this “taking it easy”.

Trust me, I’m more than ready.

Follow-up: 2 years later

Labyrinthitis is no joke! We ended up not canceling our Disney Social Media Moms trip a few weeks after this, and I’m glad we went – but man was Disney hard with Labyrinthitis, even with anti-vertigo medicine. We took it as easy as we could while attending a fast-paced conference, and I stayed off most of the rides out of an abundance of caution, but there were times my vertigo got so bad that I had to lay down on a park bench or head back to the room early – which just about killed me.

The attraction that threw me for the biggest loop was the Tom Sawyer/Huck Finn cabin that is all built at strange angles and you want around inside the cabin to emerge down below. I was literally gripping my husband for dear life throughout the climb, completely out of it and unable to tell up from down. But, hey, I survived.

Now that’s been almost two years, I wish I could say I’m 100% better, but to this day I still get vertigo every once in a while. It hits out of nowhere and there’s been numerous times I’ve fallen because I got so dizzy just doing something mundane and simple. I’m working with the specialist to help me overcome it, but it’s been a long road and he said I might be prone to dizziness and vertigo forever now. Wish me luck in shaking it once and for all!


Leanne Signature

5 thoughts on “Labyrinthitis: taking it easy, even if it kills me”

  1. Hi Leanne,
    Sorry to hear you’re so poorly. Vestibular Rehabilitation Therapy is what you need if you continue to feel as sick over the coming weeks. I have a website about my experience about my own experience. It can be nice to know you’re not alone. Hope you get better soon x


Leave a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.