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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.

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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!

22 Comments on “My Experience With Vestibular Neuritis”

  1. Hi David,
    Thank you for sharing your experience with VN. I believe I have the same condition which began just 4 days ago. I am scared to death that my life will never be normal or near normal again.
    Can you tell me how you are doing now since it has been 5 or 6 months and what percentage recovery you feel you have made?
    Thank you again,
    Elizabeth

    • Hi Elizabeth,

      Thanks for reaching out, and I’m sorry to hear you’ve got VN! The first week is awful, but it does get better… very slowly. I’d say it gets about 1% better each day. Unfortunately, some days that 1% improvement isn’t noticeable.

      I fully recovered. However, it took a solid 3 months, and I still felt traces of dizziness at times afterwards for a couple weeks.

      I haven’t felt any signs of VN for months now. I’m back to riding my bike, jogging, and surfing as if it never happened.

      The first week was a depressing time, and I wondered if life would ever be the same, but hang in there! You should fully recover! Best wishes!

      • David, thank you so much for responding. How wonderful to hear of your recovery! I am so pleased for you! It gives me lots of hope and the determination to be patient. I am very active and a salsa dancer so wonder if I will ever get back to that since it involves spinning. Right now I would be very happy to be able to walk without feeling like I am on a boat.
        I am only on day 6 and today I was able to walk carefully around the block without a cane. The headaches, fatigue and vertigo improved a bit yesterday so I am hopeful for a full recovery but feeling very anxious. Did you have a lot of anxiety with yours? When did the anxiety subside?
        Thanks again David and I sincerely hope you remain healthy and well.
        Elizabeth

        • Elizabeth, I got VN in Dec 2019. Not to scare you, but my headaches did not go away for 10 months and even then came on and off for another 2. My dizziness is bppv and comes on and off even 11 months later. I’m curious where your headaches are? Mine were always lower back of my head. The VN initially came on w a headache that was the worst I’ve ever experienced. Along with the nausea vomiting and dizziness. Message me if you want to chat! I spent months on the internet in early 2020 but just today found this blog. I had every test run in the book and unfortunately many docs aren’t familiar w VN and I’m not aware of anything but time that helps. Time does help.

  2. Hello David, I’m glad you feel better 🙂

    and thanks for sharing your experience in detailed way!
    I’ve never heard this kind of health problem until I read your blog here.

    Found your website on your Logoond profile and really great work you have there!

  3. Thanks David. This is the only post on the internet that has made me feel better about having VN. The misinformation out there, about how long it takes to go ( 3-8 weeks depending upon what you read ), is really disheartening when the reality is much longer. I’ve had it 11 weeks now, slowly making progress, and after reading your post, learning just to wait it out and let myself heal.

  4. Hi Dave, I was just talking to a friend who has covid. He is experience mostly flu symptoms and whining. I told him it could be worse. You could have malaria or VN which I both had while working on a pipeline in Nigeria 30 years ago. I had not researched VN in a long time so I did a quick Google which led me here. I had malaria first which I thought was bad. Then several months later I got the VN. You can definitely did not not over exaggerate the symptoms. Not even close. It is horrible! It will turn you inside out. Death would have been better. Malaria is nothing but a cold compared. I spent 3 days in a bush hospital dry heaving into a kidney dish. And everyone who saw me said I was “green”! It took me mostly, as I remember, 3 weeks to feel normal. Never had an episode since. I now credit my time in Nigeria to the super immunity I have now… never get colds or the flu.

  5. Hi David,
    Thank you for your post. I am on my 7 th week of this terrible VN. I started PT for Vestibular neuritis 4 weeks ago I go twice a week. What I don’t understand about his is you can have a day or two where you can function until a certain time of day and feel hopeful. But the. You get days I a row where you feel worse. Did this happen to you also? I know the good days make you hopeful but the bad days leave me feeling hopeless. This is such a roller coaster ride. I pray every night for his tomlewve my body and be healed. Can you help with the question of going from good to bad within days. Thank you

  6. Thank you for sharing your story. I also had VN. It was about 2 years ago. One day I began feeling an odd sensation like a slight drunk type balance issue but I had had no alcohol. In the morning I woke up to the whole room swirling out of control. I could not turn my head at all without violently throwing up the first 2 days. Somehow I made it to the doctor with my husband’s help and my head in a small garbage can nearly the.entire.time. I barely opened my eyes that appointment. Two or 3 days later I recieved a physical therapy evaluation which gave me an accurate diagnosis. They did about an hour long evaluation including a test that specifically focused on my eye movements. If anyone out there feels they have this, definitely look up PT exercises on YouTube or see a PT for help to help rehabilitate yourself. My PT was so incredibly helpful. I was in tears because I literally felt crazy during this time. My brain was so confused and groggy. He assured me this is normal because most of your brain’s efforts are going into teaching itself to compensate for the impaired side and learn to balance again. I felt like a drunkard walking around for weeks. This made me very self conscious and I did get some looks. The PT told me, it may feel easier to sit at home and recover but its vital to get back to every day normal life activities(as safely able ). This is what teaches your brain to compensate. He set me up with a PT app on my phone that had me do several exercises 5 times per day. I could not work the first week following, I was too unstable to walk well enough and felt horribly groggy and.unable to concentrate. I also felt very tired and took a lot of naps. Gradually I pushed myself to work, continuing to do the exercises 5 times daily. I had to get a ride to work initially as I could not drive until after week 3. After 2 years I’m at about 98%. If I turn my head fast I can get a smidge dizzy. I actually came on here because I have a cold and am dizzy when I turn my head which isn’t the norm. I had wondered if the permanent damage from VN could cause this when experiencing a common cold post VN. Anyone relate? Definitely NO spinny rides for me. After you experience this level of vertigo, you find No enjoyment ever in dizziness of any kind! I appreciate reading other peoples stories. It certainly is the most difficult health issue I’ve ever been through. I had never even heard of it until I was diagnosed with it.

    • I should also add….my main recovery period was 8 weeks. I was 95% after 8 weeks and.just have slight dizziness now with fast head turns to the right…so I try not to do that lol.

  7. Hello
    I had a undiagnosed viral ear infection in 2014 which damaged my vestibular nerve in my left ear. I was told 98% recover. I am in that 2%. I have gotten better over time but it never ever goes away. I am unbalanced especially in the dark. I cannot stand on 1 foot. Uneven surfaces are bad for me. Thats not the worst. The worst is my head, sometimes its like full of cotton balls and headaches. Anyway im living my life, trying to anyway I travel for work, fly alot (well I was before covid) and working in the city. Everyday is a struggle I try to remain a happy person but I wonder why I had to be in that 2%……btw went to numerous drs, rehab, therapists. There is no cure for vestibular nerve damage. .

    • Hi Helen, I’ve been dealing with undiagnosed vestibular symptoms for 6 months now. I’ve seen several doctors, had bunches of tests, second opinion, but none are willing to diagnose what I’m having exactly. They thought it could be vestibular neuronitis but didn’t suggest any further treatments. They didn’t prescribe me meds cause of side effects. My bp is on the lower side and I still have other probems as well, such as costochondritis and irregular periods. The last 2 months it starts to affect my balance. I’m litteraly living in a “floating” world, feeling something weird in my head all the time. I just can’t function as normally as I was before. Standing and long walks would make me fatigue. I need help but I don’t know what could help. I appreciate your attitude, Helen. Are there any treatments or meds that work for you and make you feel better?

      • hi Pam, i had extreme NV four years ago for 3 whole days.. then again for another 3 days a few weeks later. I figured it happened right after a pregnancy and my hormones caused it.
        It just happened again a week ago during the same time i have a viral infection, stuffy nose, headache, etc. It started off with little dizziness and each day it got worse. By the 5th day, i had to go to the ER because i wanted to rule out anything serious, and everyone was closed due to the new year… Monday , January 4th i called an ENT and was lucky to get one to see me right away. I asked many questions, but he seemed to think its the virus that caused it this time. He did say that hormones, viruses, are also causes of why it can happen to people. Anyway, he gave me prednisone steroids to take. I took one right away and felt relief within the hour, and another one before i went to bed. I slept about 9 hours last time and when i woke up, i had the extreme dizziness again. I am on this steroid for 5 days. While i know it helped me yesterday, i can only hope it will help me over time. He did say to take the pills and after a few days it would calm down the inflammation which would help my symptoms go away.

      • Hi Kristina
        Sorry for your troubles and I am in the same boat. Unfortunately like I mentioned I have not found a doctor to give me hope at all. I even asked for the operation to cut the nerve but they wont do it as it is very delicate and could damage my hearing. I dont care but they do they said dizziness could get worse. I have tried many medications from various drs. Nothing really helped and they made me either very tired or more dizzy. Right now I have been taking Betahistine (a Canadian medicine not approved here in the states) for about 1 year. I dont think it is helping me but my dr wants me to continue…….The head part is the worst, worse than the dizziness I feel. If someone is talking to me or I am on a zoom call my head gets so weird.
        Christmas I could not even enjoy for this reason. And I cannot even drink!!! I get bad headaches from it and THAT might be the worse thing :))
        Anyway praying for us all.

  8. David,
    Thank you for sharing and putting this on the Internet. I know we searched when this happened and could not find much.
    My husband also had VN and almost exact same story as yours. He could not function and missed work for months. His symptoms started in early February, 2020 – also misdiagnosed with BPPV initially. He was given steroids, didn’t help. It took a month to get the real diagnosis. He was very distraught trying to live with this. It was almost impossible for him to eat and hard to watch him as there was nothing we could do to help. Gradually the symptoms would get less and less until one day he got out of bed and said he was just a little dizzy.
    The symptoms are just now returning this week. Not as severe as before, but the dizzy monster is back.
    I read a recent article from ER doctors who reported a drastic increase in VN and Optic Neuritis in patients with COVID-19 (they are all located in cranial nerves). My husband did not/does not have COVID, but maybe this is the reason for so many getting VN now.
    Bottom line I don’t think (in my non-medical opinion) that you will ever get rid of VN entirely.
    This is a terrible illness. If you have it, just know it will get better. Prayers for all of you.

  9. Thanks for this information, David. I am 5 weeks post covid today. Started with VN a little over 4 weeks thanks to covid. On 2nd round of steroids started vestibular therapy and acupuncture today. Praying I will be better soon since at this point I still can’t work or drive. I am a nurse. Trying to do as much as possible to get back to normal but feeling it’s going to be a long road.

  10. Thank you David! I am on day 6 after the initial onset of VN. Like you, I was initially misdiagnosed, but went to my MD when symptoms didn’t improve. They just prescribed prednisone (steroids)…my question is, did your steroids help? And if so, how long did they take to make a difference? This is awful, I feel totally useless and can’t do the simplest of tasks. My poor husband has to do EVERYTHING, which is alot as we have two young boys. I can’t work or drive or even sort laundry!!! I am hoping the steroids will help, just hope I won’t get a case of ‘roid rage’ lol. I support the legalization and use of weed, and I would partake if I could, but I can’t as I have a terrible reaction to it for some reason. Anyway, thanks! Dizzily yours, Kate

    • hi Kate, I am sort of in the same boat as you a little, except my first time having it was 4 years ago after a difficult pregnancy. It was extreme vertigo at that time, kind of like Davids story except without the vomiting. Mine lasted 3 whole days, and it happened again 3 weeks later for another 3 days. No meds at that time , it just left me and didnt come back. I had assumed at that time it was pregnancy hormones . Last week, December 28,29th, it started to come back but not as extreme. I was having a cold virus at the same time. It got worse and by the weekend i could not walk without holding onto walls and could not function enough to play with my toddler . I found myself in the bedroom eyes shut and all i wanted to do with sleep this way with my hubby taking care of my kids . Not a way to live! So i got up and told hubby i needed to go to the ER to make sure it was nothing more serious… After normal testing, he told me to call ENT Monday. After seeing an ENT yesterday January 4th, he told me its likely caused by the virus i have. My only symptoms of that virus left is a stuffy nose. He gave me prednisone and it did seem to help for the rest of the evening yesterday. I woke up today and felt unbalanced and dizzy today. if i get up to walk or move my head around. I am going to take my first pill in an hour and see if it helps any. Has your steroids helped you with your symptoms since youve been taking it?

  11. Thank you David for creating this blog. I was diagnosed with VN after recovering from Covid. It’s been a long recovery, I am on my 6th week since my symptoms started and started therapy. I am glad to know that I am not the only one going through this. The information out there is that it will subside within 3 weeks and that’s not true. It’s so frustrating and mentally draining. I feel so tired, a fatigue . I was prescribed meclizine but do not like the side effects. It puts me to sleep.
    It”s just so draining, I cannot do any of my normal activities, my house chores or playing with my toddler.

  12. I have had this dizzy since July taken tests did balance did gaze exercise 4 shots in my middle eat now I am going to Vanderbilt to see a specialist crazy my eyes are effected my brain concentration and my eye I just pray this Dr can help me

    • Have they given you prednisone steroid oral pills? It is helping me, but i only started taking it yesterday. My ENT said it helps calm down the inflammation.

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