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. Deanne Avatar
    Deanne

    I have commented here before about my VN experience and have also read all of your stories. I can empathize with you. For the most part I continue to function well post VN but on occasion have some recurring symptoms. I recently reached out to Alen Desmond, Doctor of Audiology who specializes in vestibular disorders. Interestingly, he also had VN himself. He shared his experience through his blog and he will be posting a new blog post to address a few of my questions. Many of you may find some of his previous posts on VN helpful as well.
    Just thought I’d pass along the info in case it is helpful to someone out there. I’ll also post the new link when the new post is up.

    https://hearinghealthmatters.org/dizzinessdepot/

  2. Andy Robinson Avatar
    Andy Robinson

    Hi David
    At last I have found an article that seems to put some sense into my ongoing issues. Thank You!!!
    In June 2021, while driving I had a sudden visual attack (Not Dissimilar to the the intro to the Austin Powers movies) this was followed by an A&E visit where nothing was found!
    For the next week I had spells of dizziness and then on Day 8 a situation whereby I could not walk without falling over. Unable to see bright light, TV or computer screen without Nausea. Motion sickness in a vehicle was probably one of the worst things I have ever encountered in 62 years!!
    The anxiety levels associated with this illness were so extreme that I thought I was having a heart attack.
    Another trip to A&E and again nothing found except my body had zero reflexes. Subsequently my heart was found to be in AF and medicated.
    It is now 15 months and I still have severe issues with light and motion/vibration. Although medicated I still have issues around sleep and concentration. Brain fog has diminished over time but still significant some days.
    In consideration of week 1/2 I am now in a better place but still have some significant issues.
    Yet again thanks for all contributors to this article – At least we now know we are not alone.

    1. Andy Robinson Avatar
      Andy Robinson

      Just to add that all this occurred just two weeks after a second Covid 19 vaccination and I am convinced that this was the trigger point for my VN. albeit no medical diagnosis or support in respect of this claim.

  3. Erin Avatar
    Erin

    Was diagnosed with VN about 7 days ago, started happening 9 days ago. i cant lay down and feel semi normal but forget sitting up ans walking.. i am so offbalanced, my head pressure is insane and dizzy as hell. i cant walk more than a few feet, and i cant walk outside. Im keeping positive atleast trying but This sucks. Im on steriods 10 day on day 5 ans my doc said i should feel better by now.. very terrified im only 22 im scared

  4. Rodney Peacock Avatar
    Rodney Peacock

    WOW! After reading this story, I thought I wrote it about myself! Bam! just like that, I fell to my knees and could not walk or talk. I was transported to the hospital by ambulance, then about 4 hours later, I could communicate with the hospital staff. I spent three days in the hospital with an MRI and CT scan. Doctors thought I had a seizure or a stroke (I’m 62), but the doctor ruled them out after the results returned. Three days later, I felt much better, but still, everything around me felt off kilt. Like my head was a liquid compass. I was then discharged with no answers. This was the first time I walked after collapsing on my driveway, and now I know why I was constantly being asked if I felt nausea, but I didn’t until now. Non stop vomiting until I lay on my bed without any head movement. I went to Keck Hospital and discovered I had Vestibular Neuritis. It’s been three months, and I’m at about 85% back to normal.

    1. Renee Avatar
      Renee

      What kind of treatment did you get for this to help you? I am in week 3 and feeling defeated…

    2. Benjamin Jacques Avatar
      Benjamin Jacques

      Thankyou for your post it has given me hope that i will recover. I am 37 and love to play sport/exercise. I want to dl all those things again. I am day 6 and although i am up and walking, my balance is not great and the dizzyness is constantly there. I started P.T day 3 as i was lucky in getting diagnosed quickly. The exercises are helping but i think it will take time. 1% everyday!

    3. Dena Avatar
      Dena

      Hi Rodney,
      I felt the same when I read Davids account, to see the accuracy that I had experienced (and still do) was amazing. T too thought I was having a stroke the first time! I am in the UK and was diagnosed 7 years ago with Vestibular Migraine. My episodes wear off after about 8 hours but recur every 2 to 3 months.
      I am now 68 and last November my symptoms accelerated, I lost 54 days out of 90 to it. My research told me that the migraine is triggered by proteins landing on neurons in the brain so I asked my doctor for Diazepam (Valium) working on the principal that if my brain was quirking that tranquilizing it would correct the situation.
      It works every time. As soon as I feel a dizzy spell coming on I take the Diazepam, sometimes I am back in the land of the living within the hour, sometimes I sleep for longer but it definately works for me.
      However, Diazepam does not stop it occurring and I cannot take it all of the time because it is addictive so I have recently started taking coQ10 and Magnesium, I went a whole 18 days before my next episode, which was a big improvement on every 2-3 days. I am hoping that as time goes by these will have a cumulative effect and hold these episodes at bay completely.
      I also take L-Trytophan and Taurine at bedtime, I am a quiet non reactive person, very calm but I think that whilst outwardly I cope with stress, the stress goes inside and does damage.
      I hope this helps,
      All the best,
      Dena

  5. Rodney Peacock Avatar
    Rodney Peacock

    Additional: I had all COVID shots and a buster in the last two years. I also got COVID two weeks before this occurred, and COVID is a virus.

  6. Rodney Peacock Avatar
    Rodney Peacock

    Our clinical experience mirrors that of R Gacek. Many patients with chronic or recurring vestibular neuritis induce remission of symptoms on high-dose valacyclovir; fewer do so on long-term acyclovir, and as the dose drops below 500 mg valacyclovir po TID, the recrudescence rate goes up. In our experience, about 30% of patients relapse within several months after stopping antiviral therapy. Some patients never attain suitable relief of symptoms, and many but not all, have some degree of permanent documented vestibular impairment. Psychological factors and motion intolerance are common in this group of patients.

    In summary, a growing body of evidence suggests that acute viral vertigo syndrome is viral, that the most likely viruses to do this are herpes family viruses, and that recurrent and chronic vestibular neuritis may benefit from the use of antivirals. There is at least class IV evidence that anti-herpes medication is of value in managing chronic and recurring viral vertigo disorders, quite separate from single-event acute viral vertigo, which typically resolves with supportive care, sometimes more rapidly with short-term steroids. For these reasons, we have been using antivirals for chronic or frequently recurring vestibular neuritis since 2001, with strong clinical reason to believe that for many. Still, for not all patients, this is highly effective.

    Vestibular neuritis, inflammation of the balance nerve, is the second or third most common cause of peripheral vestibular vertigo, with benign paroxysmal positioning vertigo thought to be the most common. The purpose of this article is limited to that which appears to be caused by viral injury to the vestibular nerve. Many causes of dizziness, vertigo, rocking, floating, near-black out, fainting, imbalance, foggy-headedness, or motion intolerance exist. Vertigo is a relatively common problem with about a 1-year prevalence estimate of 3-5%.[1], [2] By comparison, coronary heart disease has an annual Prevalence of Heart Disease rate of about 4%. Migrainous vertigo has a prevalence of 0.89%, and benign paroxysmal positional vertigo 1.6%.[1] Ménière’s disease and benign positioning vertigo, which many believe may at least of the time be secondary to vestibular neuritis, are briefly mentioned in this article but are not addressed in detail. Vertigo with psychological overlay, called phobic postural vertigo, may also be a sequela of vestibular neuritis.[4] An enormous study from Taiwan used national health diagnosis code data from office visits for vertigo to study the overall prevalence of unspecified vertigo.[2] An overall prevalence rate was 3.1% or about 3.13 per 100 population. Of that number, nearly 38% had had a recurrence at least once. Of those, 48% had 2 recurrences, 14% had three, and 16% had more than three recurrences. It is not likely that all of them had recurrent vestibular neuritis. Still, a ready inference from this study is that if recurrent vestibular neuritis is the 2nd or 3rd most common disorder, it may have a recurrence rate under-estimated by smaller studies. Differentiating vestibular neuritis from other acute brainstem disorders, vestibular migraine, and managing acute, chronic, and recurring vestibular neuritis will be addressed briefly. Vertigo is a common problem, and acute viral vestibular neuritis is a major part of the picture.

    Acute initial vestibular neuritis is said to have an annual incidence of 3.5 per 100,000 population accounting for 7% of the patients at outpatient clinics specializing in treating vertigo. The reactivation of a latent herpes simplex virus type 1 (HSV-1) infection is thought to be a likely cause[6] (but this author has found that at least 10-15% of vestibular neuritis patients have negative HSV 1 and HSV 2 IgG titers). Vestibular neuritis is a diagnosis of exclusion.[6] Vestibular neuritis is also described as acute viral vertigo, acute vestibular neuronitis, or chronic or recurring viral vestibular neuritis. These terms, however, are not completely synonymous. Each has its own features which do overlap and have the common thread of viral inflammation of the vestibular nerve.

  7. Rodney Peacock Avatar
    Rodney Peacock

    UPDATE: It’s been 6 1/2 months, and still not 100%. The only way to recover now is to let the brain reprogram balance. Doctors say it sometimes causes permanent damage to the nerve. I’ve had no improvement for two months now. This sucks

  8. Rod Brown Avatar
    Rod Brown

    February 6, 2021 was a Sunday. It was very warm for this time of year. I was seated in the front yard playing hearts on my IPad while our 2 little dogs ran around me chasing each other. I consider myself to be quite healthy. I play racquetball regularly and have a physically demanding job as a mail carrier. Having saved up nearly 13 Months of sick leave really paid off. Out of nowhere came a spinning sensation. I’ve experienced these in the past and they go away in 3 seconds leaving you wondering why they ever happened in the first place. Well this one did end, but immediately afterwards I heard/felt a pop in the center of my brain. The best way to describe it is if you take your thumbnails and hook them on your upper teeth and pull them forward making a “clicking” sound. After this “click” the world was spinning and I went flat. As I mentioned earlier it was quite warm and at this point I was sweating profusely .My wife finally found me and coaxed me into the house where I laid on the floor for the remainder of the day. After improving for the next 2 days I was ready to go back to work, until I woke up that Wednesday morning spinning all over again. Off to the ER where they did all kinds of tests until later in the day a positive Covid-19 result came in. Vertigo was my one and only symptom. It’s been a year and 3 months and after reading some of these stories I feel lucky. Ya, I went from not being able to stand to going back to work in about 4 months time. I even drive ( the scariest if you’ve been there). After the vertigo went away it has never returned however I still have something that is hard to describe . It’s like when you’re coming off a mountain and your ears won’t “pop” ….mixed with jet lag…..mixed with brain fog, and I get exhausted easily.

  9. Big Johnson Avatar
    Big Johnson

    People need to start waking up and smelling the coffee about COVID. There is no evidence whatsoever this is a naturally occurring virus but tons of circumstantial — strong circumstantial evidence it was an engineered virus. Regardless of a persons political camp, the facts are undeniable that this is an engineered virus. Once we accept that we can better understand why VN is occurring more than ever before according to one doctor I spoke to. When you teach an upper respiratory virus to infect humans and sidestep the immune system — whilst making the virus more virulent — stands to reason the effects will be more severe. I read 30% chance of VN from a common cold, now, on a couple sources. Since all cold viruses are basically a Coronavirus, stands to reason again, that the super virus will eventually “teach” other Coronas how to infect easier and be more sever. Same doctor told me he sees people with much longer lasting cold symptoms than ever before. We need to start holding people accountable for this, stop thrusting our heads in the sand and stand up. Especially since we (taxpayers) are still funding this GOF research to this day.

  10. Rodney Peacock Avatar
    Rodney Peacock

    Agree! When I called Keck Hospital to make the appointment, the receptionist commented that she had never seen so many appointments regarding new VN cases!

  11. Jeff Roberts Avatar
    Jeff Roberts

    My vestibular neuritis began in March of 2006. I still suffer from it today, June, 2023. It’s with me 24/7 365 days per year. Never worse, never any better. I’ve been to Mayo, Dr Tim Hain at Northwestern in Chicago and a few others. I’m once again trying therapy beginning tomorrow.
    It sure sucks!

  12. bgtaustin Avatar
    bgtaustin

    God bless you for writing this. I’m on day 8. I feel hopeful now. No one seems to understand what it really means – friends say “oh, I’ve had vertigo, it’s terrible!” But until you’ve experienced this it’s really unimaginable. I’m grateful you put it into such clear words. I feel seen and have something to share with family so they understand the experience better. All the best to you, so many thanks.

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