My Experience With Vestibular Neuritis

Vestibular Neuritis is a rare inflammation of the vestibular nerve within the inner ear. I got it, and it sucks.


In November of 2019 I was suddenly stricken with Vestibular Neuritis, a rare condition in which the vestibular nerve within the inner ear becomes inflamed. Although it sounds innocent enough, it will turn your world upside down — literally.

I’m not a doctor, just an unlucky dude that contracted Vestibular Neuritis. I’m an active adult male in my late 30’s. This is an account of my experience in hopes that it will help others diagnose themselves, and know they’re not alone.

The First Day

My wife has recently started line dancing. I’ve been attempting to learn a handful songs, so I can join her on the dance floor. After a night of dancing and a couple drinks, we headed home. I went to sleep, feeling totally normal.

In the morning, I felt somewhat nauseous as I laid in bed. At first, I thought it was just a hangover. However, I only had one beer and a mixed drink. Not enough to typically give me a hangover. So, I got out of bed to start the day.

Immediately, I collapsed to the floor. I attempted to stand, and fell back to my knees. I was overcome with extreme dizziness and nausea. Crawling to the toilet, I curled over the bowl and vomited. When there was nothing left, I managed to climb back in bed.

The slightest movement sent my head spinning like a top. It was a horrible dizziness. The dizziness caused nausea and headaches, which in turn, induced vomiting. The only thing that helped was absolute stillness. So, I laid in bed motionless, for hours.

When my wife suggested taking me to urgent care, the thought of walking to the car sounded like a journey through Mordor. Eventually, I made my way to the car, stopping to puke multiple times.

Walking was extremely difficult. However, riding in a car was murder. Every curve, turn, and speed bump on the way to the clinic was an awful experience. Upon arriving, I sat in the waiting room, hurling my guts into a bag.

The urgent care doctor thought I was experiencing an appendicitis. So, he sent me to the Emergency Room. By the time we made it to the ER, my dizziness and nausea was so bad that it was impossible to walk. So, Emily escorted me to the waiting room in a wheelchair.

After waiting for an eternity, my name was called. Then, they took my blood, hooked me up to an IV, threw me on a gurney, and wheeled me into another room.

This was all a very new experience for me. I’ve barely seen a doctor in the past 25 years. Much less been rushed through the hospital on a gurney. It was surreal.

When the doctor came in the room, he asked a series of questions. Most of which seemed like cognitive tests. He had me perform physical tests, like moving my pointer finger from my nose to his hand.

The doctor made a remark about my “green” appearance. I thought he was joking. He wasn’t. I was truly green! The doctor then left to determine whether or not I had an appendicitis.

I was so miserable, I didn’t care what the doctors had to do. If it was surgery, so be it. I just wanted the misery to stop!

Fortunately, it was not an appendicitis. Instead, the doctor said I had BPPV — or vertigo. I felt relieved that I wouldn’t need surgery. I would just be dizzy for a day or two. Then, it would go away as quickly as it occurred. I could live with that! 

In hindsight, I would have preferred an appendicitis.

The doctor gave me some Dramamine, the same stuff for sea sickness, and sent me home.

The First Week

At this time, I hadn’t realized I had been misdiagnosed. You see, BPPV vertigo is quite common. It’s the result of crystals within your inner ear becoming dislodged or displaced. Typically, it only lasts a few seconds to a few days. In many cases, it can be fixed by performing a series of head rotations and exercises.

There are plenty of YouTube videos illustrating a variety of exercises to reset the crystals. Many of which involve throwing your head down in dramatic “cat cow” yoga style movements, or violently shaking your head from side to side. Since I thought this was I had, I attempted several of these exercises.

With vertigo, the exercises may help. However, with Vestibular Neuritis, they are needless torture. Basically, I was torturing myself.

To clarify, Vestibular Neuritis is not the same as BPPV. Vertigo is a symptom of Vestibular Neuritis, not the diagnosis. Performing head exercises will not help.

You will likely hear something like this from friends and family, “Aunt Tessie had vertigo. They did some head exercises, and poof! It went away!” That’s not the case with Vestibular Neuritis.

The first few days were pure hell. Each morning I awoke, I hoped the symptoms would have vanished.

They did not.

Basically, I was bedridden. Looking at screens like my phone, computer, or television sent my head spinning. Even looking down at my spoon while trying to eat a bowl of soup made me horribly dizzy and nauseous. Mostly, I slept and listened to music and podcasts.

After a few days, depression sets in. It’s no way to live. You’ll wonder if you’ll ever be active again. Personally, as a surfer, having your sense of balance vanish entirely is akin to being a singer, and waking up one morning to find your voice is gone.

After 5 days, it wasn’t much better. Based on my research, I suspected this was more than a simple case of vertigo. So, I scheduled an appointment with my doctor.

The Proper Diagnosis

Fortunately for me, unfortunately for her, my doctor had personally experienced Vestibular Neuritis while she was in medical school. So, she understood exactly what I was going through. She confirmed my suspicions, and properly diagnosed me with Vestibular Neuritis.

In her case, Vestibular Neuritis lasted 3 months, and it hasn’t recurred. Unfortunately, 3 months is not a short length of time to live this way. However, it did provide hope, and a light at the end of the tunnel.

She prescribed some heavy steroids, and over-the-counter nasal spray, and allergy medication like Benadryl or Zyrtec.

The Cure

Unfortunately, the only cure is time. The length of time varies. Most sources online state that Vestibular Neuritis lasts 3 weeks. In my experience, that’s false. The worst of the condition might last 3 weeks. However, don’t get your hopes up like I did, and believe it will be entirely gone within 3 weeks. I would expect symptoms to persist for multiple months.

As of writing this post, it’s been 2 months since I was infected with Vestibular Neuritis. While life is somewhat back to normal, I still have difficulty moving my head quickly or looking over my shoulder.

On the bright side, I’ve started riding a bike again, but I’m still unstable. I attempted surfing a couple days ago. Unfortunately, I got very dizzy within a matter of minutes and had to exit the water.

The Treatment

Honestly, I didn’t feel like any of the prescribed and/or over-the-counter medication helped. The only thing that has consistently helped my nausea and reduced the sensation of dizziness is marijuana. 

I’ve been a casual user of the wacky tabacky prior to my diagnosis. However, since contracting Vestibular Neuritis, weed is the only thing that I can confidently say has helped for certain. My experience with this condition alone is enough to solidify my stance on the legalization of marijuana, but that’s another story.

The Cause

According to the doctor, it’s a viral or bacterial infection of the vestibular nerve. She said most people are infected with Vestibular Neuritis when they have a cold or the flu. According to her, it tends to happen more in the fall and spring.

In my case, I was completely healthy leading up the event. So, I’ve got another theory. In the Gulf of Mexico, there is a seasonal algae bloom known as Red Tide. It’s a big deal, often shutting down beaches and killing thousands of fish and sea life.

As a native Floridian, I’ve been around Red Tide for much of my life. I’ve surfed and swam in Red Tide several times. While it’s definitely not recommended, surfers of the Gulf Coast will go to extremes to score decent waves. My luck caught up with me.

I smelled Red Tide while surfing a few days prior to contracting Vestibular Neuritis. My exposure to Red Tide likely lowered my immune system, and possibly the water remained in my ear too long. As a result, I believe this was the cause of my Vestibular Neuritis.

Of course, that’s just a guess. There’s no way to really know. Regardless, I’ll be wearing ear plugs and/or flushing my ears out with hydrogen peroxide after being in the ocean from now on.

The Recovery

It’s a long road. Each day my wife asked, “Is it any better?” My answer was usually the same, “Slightly… I don’t know. Maybe 1 percent better.”

In my experience, it has been a very gradual recovery process. Although it is significantly better, my symptoms still persist. After 2 months, I still feel the dizzy sensation daily. I hope after another month it will be entirely gone, and I can get back to my life as usual.

The recovery process feels so minuscule, you might wonder if you’re getting better at all. The good news is, you will probably make a full recovery. Even better, it’s unlikely you will ever have Vestibular Neuritis again.

If you’re an active person, find something healthy to do with your time that doesn’t involve balance — like painting or music. Additionally, appreciate the people in your life providing help. My wife deserves a medal of honor for helping me through this time.

Vestibular Neuritis sucks, but it could be much worse! The experience has given me more empathy for others. However, I wouldn’t wish Vestibular Neuritis on my worst enemy. Hang in there!

162 responses to “My Experience With Vestibular Neuritis”
  1. Rodney Peacock Avatar
    Rodney Peacock

    Objective:
    To present findings that suggest steroid treatment within 24 hours of the onset of vestibular neuronitis results in better restitution of vestibular function than treatment between 25 and 72 hours.

    Patients:
    Thirty-three consecutive patients (17 men, 16 women, mean age 57 yr, range 17–85 yr) with acute vestibular neuronitis and treated with steroids within 72 hours after symptom onset. Patients were divided into two groups depending on whether they were treated within the first 24 hours.

    Interventions:
    Oral prednisolone 50 mg/d for 5 days with tapering of doses for the next 5 days, or combined with initial intravenous betamethasone 8 mg the first 1 to 2 days if the patient was nauseous.

    Main Outcome Measures:
    Proportion of patients with normal caloric test result (canal paresis value < 32%) at follow-up after 3 or 12 months.

    Results:
    All nine patients (100%) treated within 24 hours from onset of vestibular neuronitis had normal caloric test results at follow-up after 3 months, as compared with 14 of 24 (58%) of the patients treated between 25 and 72 hours (p < 0,05, Fisher's exact test).

    Conclusions:
    The timing of steroid treatment of vestibular neuronitis may be important for subsequent vestibular restitution and hence, for both time to recovery and late symptoms, according to the literature.

  2. Eric Avatar
    Eric

    I am still recovering as well it’s been about 9 months, got mine from an ear infection. I am very close to feeling 100 percent, maybe 97-99 percent, but do still have some odd feelings and headaches from time to time. I will say something that helped me you might want to try is acupuncture. I think it actually has been helping my situation over time. It makes sense in some way because it’s all about the nervous system. I also did physical therapy which helped a lot, and did that strong for about two or three months, it took me from probaly 50-60 percent better to 85-90 percent better. it was tough but really helped, had a lot of bad headaches with the physical therapy. Also taking magnesium and a B complex vitamin might help. b12 is supposed to promote ear healing, and magnesium seems to be kind of food for the vestibular system, and can calm it. Take a close look at which kind of magnesium you get there are different kinds and some help more than others. I am very much looking forward to that 100 percent feeling and think that might take another couple months or so for me. Oh and I do have some small ear ringing, that has been getting smaller and smaller with time, it’s pretty small now, but I do hear it from time to time during the day, and do hear it at night. Alllmost there, can’t wait until it’s over.

  3. Charlene Thompson Avatar
    Charlene Thompson

    I’m now into my 4th year of daily problems with this Dr’s Dr’s Dr’s. Still no answer, cause or reasons! Undergoing more tests this week! I am really nearing the end of my patience and desire to go . I’m 68 , I’ve had enough!

    1. Dena Avatar
      Dena

      Hi Charlene, I too am 68 and have had Vestibular Migraine for 7 years. The first time it hit I went seriously dizzy, which make me violently sick which made me even dizzier, I laid on my kitchen floor in the recovery position for over 4 hours still being violently sick, to be honest I thought I was having a stroke and on my way out. After a few hours it seemed to just go away but I felt hungover for days afterwards, like I was walking through treacle. Since then I have had all the scans and tests and various medications but nothing seemed to work and these episodes would recur every 2-3 months. In November last year they accelerated and I lost 54 days out of 90. In desperation I went to the doctor and asked him to prescribe Diazepam, it works, every time. Sometimes I am recovered within an hour sometimes I go to sleep for a few hours but it defiantely stops it in it’s tracks.

  4. Lilly Avatar
    Lilly

    Hi….I was driving home…sudden dizzy feeling…not well…thought a headache or migraine…luckily got home…went to bed…at 7 am next morning….threw up and even lost bowel control…was awful…then I really could not walk straight…bathroom visits was a nightmare….wanted to use diapers…it was like being seasick plus migraine plus vertigo…I wished for death…my eyes had nystagmus…could not focus..saw Dr…said it would last up to 6 weeks.. 3 weeks of hell in bed…forced myself to walk around neighborhood with a cane…would train my eyes to refocus..it was a very hard recovery…just felt so out of it and just awful as your balance is ruined…can’t drive…so really isolating…after 4 weeks I was finally better…I don’t wish this on anyone…but know it does pass but push yourself to walk and train your eyes to focus to get your eyes and ears back in balance

    1. Karina Avatar
      Karina

      Hello, I was hit with vn 2022. The anxiety I have from that experience is horrible. Has anyone had this more than once?

  5. Luis Avatar
    Luis

    September 17th 2024, I was rushed into hospital by EMTs because I lost sensation and awareness of my surroundings. Doctors were clueless and sent me home, take a few days off of work it happens again the 7 days later. Within those 7 days I felt terrible, trouble focusing with vision. Fluorescent lights were really troubling for me to be around. I would get easily nauseated by screens, complex patterns and or fast moving objects. My balance is wonky at best, I am always veering to the right side. I had crushing ear pressure on the right ear, no tinnitus with strange brown noise. It sounded like I was submerged in water on that side. I have had an inability to hold food down, which resulted in me losing round about 14lbs pounds so far. I am also suffering from crippling anxiety, and uncertainty of what the future might hold.

    It’s been about 7 weeks, i am still considered to be in the subacute phase of the illness. In that time, I saw an audiologist on October 2nd, completed an audio test, came back perfect on all tones, tympanic pressure/health all good as well even though I complained of excruciating ear-fullness, he said give it some more time it should subside. I was also relegated to a Vestibular therapist for VRT at Mount Sinai Ear Institute in NYC, my first session was on October 9th. I have mild improvement with what I’m being instructed to perform up to this point. On October 15th, I had a VNG test at the neurologist. I received the results on November 6th. Bilateral caloric results were perfectly normal which contradicts my experience when taking the test. My left ear responded the moment the water/air was shot into my ear, vertigo and room spinning came on. When they tried the right ear, much of nothing happened.

    Today, as I type this November 12th, I will go in for my second audio test at Mount Sinai. The ENT doctor will be taking a closer look at symptom history, my current state, order more exams if needed and hopefully give me a clear diagnosis of what I am dealing with. On November 15th, I go back to the neurologist to get an MRI with contrast on the on the right ear. God willing it’s not acoustic neuroma or any other remarkable growth.

    I can say, a couple things that have improved greatly has been my vision and ability hone in objects. I can tolerate screens pretty well, which means I can my job (thank God) brain fog is gone for the part. Ear pressure has subsided greatly but still there, brown noise is gone, and pressure no where near as powerfully as it was in the first 3 to 4 weeks. I have this Rice Krispies treat sound when I swallow in my right ear. I will be following up the ENT about this. I had heavy head syndrome, it felt like head weighed 100 pounds and my neck just couldn’t deal keeping my head up right. I developed this on the second to third week, it was brutal. This has also gone away thankfully, but for ten solid days it was unrelenting to say the least. What has not improved for the most part is my balance, I feel that my brain completely dependent on my vision for stability. Streets sometime feel jagged and titled, i don’t believe my brain has compensated properly at this point. I am very aware of my posture and I try very hard to keep my legs from what I perceived to be firm and linear.

    What really scares me is that this is diagnosed as something like Ménière’s disease. I have read all the stories from post blog to comment, I have also lurked on Reddit. The horror stories about this condition far outwardly the silver linings, I feel my anxiety rise as I type this, I survived early on set of covid in 2020. Lasted 15 month bed ridden and pretty much got my self out the hellish hole I was in for almost two years. I consider myself a very active 39 year old. My hope for everyone here and those who will join us in the future, a speedy recovery and as little misfortunes on the journey to recovery as God will grace us with.

    Take Care. 11/12/2024

  6. Maria Helena Avatar
    Maria Helena

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  7. Red Avatar
    Red

    Hey David,

    I got vestibular neuritis 3 weeks ago. Rushed the ER and multiple urgent care visits later I finally got the diagnosis. I’m glad I’m not the only one when it comes to over-the-counter meds for this. Nothing is working for me. How did you handle work during this time? I’m struggling to cope, even though I’m able to work from home until the dr. clears me. Its a nightmare. Any suggestions?

  8. Rodney Avatar
    Rodney

    Hello everyone,

    It’s been a little over two years since my first post, days after this life-changing event. I still have vertigo and have only recovered to 90% normal. All I can suggest is to stay active. Doing this will help the brain reprogram your balance. All my doctor could say was that life could be worse; you could be battling cancer or some other life-ending issue. If my symptoms were like the first week of this life changing event….life would be over. That’s how bad the beginning is, but stay positive; it will improve.

  9. Sandra Avatar
    Sandra

    It was June 1999 when I was in Hong Kong in Halls of Residence studying for my PhD that I woke up, went to brush my teeth and the wall on my right span upwards. I was 33 years old and my life was about to change. I was very fit, ran alot, worked hard and played hard -I had no idea what was going on that morning, lived in a tower block and in the night thought the building was toppling. It was scary. I felt so sick, couldn’t move my head without the walls spinning, let alone watch TV, listen to radio and any noise or movement severely affected me. Going to the loo was a huge ordeal, swaying along the corridor from side to side as if I were drunk. Months went past and I wished I was dead. I was employed by a New Zealand company to study in Hong Kong and I don’t know how but I flew to New Zealand, was diagnosed with BPV and saw a physiotherapist in Auckland -Dinah Bradley. She made me feel better, slowed down my breathing and treated me for hyperventilation syndrome – I assume this was my stress response to BPV. By the time I saw Dinah the spinning had stopped and I was feeling as though I was permanently swaying about on a boat. Sadly I only saw her once and the swaying returned and I headed home to the UK. My ENT specialist here told me to read a book by Dinah Bradley and I proudly said Ive already seen her! I was in disbelief that a breathing pattern disorder could cause such swaying. I understood it that the vestibular disturbance caused a change to the signals received by my brain and that the brain is very dynamic and will re-learn what the signals mean. This takes time and I was told I would get better. That was a life line for me. I felt I went up a notch every 3 months in terms of recovery after the spinning stopped. I returned to Hong Kong and completed my PhD in 2004 and dont know how. Now I am 59. It is time I returned to New Zealand but the confidence is knocked and the eyesight isnt what it used to be. Looking through curved lenses makes me feel dreadful after a prolonged time and whizzing screens up and down on the mobile isn’t good if I’m tired or stressed. Luckily I have my great grandmothers glasses – they are flat and are glass and my landrover windscreen is flat glass too! I’m better outdoors than inside and the best relief was digging the garden (much to my fathers delight!). It took many years for me to feel comfortable in meeting rooms so I have been working outdoors most of the past decades and its time I changed. Supermarkets and library aisles were problematic in the early days. I understood balance is related to eyes ears and feet- I found my toes trying to dig into the ground seeking out signals. Weird! I learned to cope and life is now good and I wish everyone who lives through this debilitating condition all the very best. Chin up, keep going, stay calm, you will get better!

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