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. Lesley King Avatar
    Lesley King

    Hi, I’m posting this in case it can help anyone. I’m still on the mend since December 2020. My vision has also been affected in that I have become quite motion sick, like travel sickness, which even gets triggered if I’m scrolling down the computer screen or watching somebody’s video that they’ve posted online. Swimming in the sea this summer really exacerbated all my symptoms too. The thing that really takes the edge off the nausea, dizziness and visual disorientation for me is a homeopathic remedy called Tabacum. I first tried it because of the motion sickness and I didn’t really expect it to help because so little does help. But I have used it several times now and it really takes the edge off.

    1. Rabia Avatar
      Rabia

      Hi!

      I experienced some sensitivity to light, especially bright fluorescent lights and looking at screens. had headaches, strong pressure in my head and dizziness.ı dont feel any improvement on my vision.
      Have your symptoms gotten better since you published your post?

  2. Georgiann Kocherzat Avatar
    Georgiann Kocherzat

    I have VN too. The only good thing is that it only last for 1 days of 5 to 6 hours.
    So far this year I have had 3 VN attacks. 2 of 3 were in the afternoon at the same time 2:00 pm

    my question to you is that my doc tells me that I have herpes simplex that is causing the vertigo because it is sitting on my nerve going to my brain.

    I am 70 years old and i am scared of my future. I made an appt. with Cleveland clinic in November

    1. Anon1 Avatar
      Anon1

      I’m going anonymous with this one because it’s personal but right before my VN onset I had an issue with constipation. That was completely new issue to me. I had constipation due to a dietary change. But I recall straining to go to the bathroom and hearing a slight whooshing noise in the ear I developed VN in. I wondered if I had burst something in my ear that could have created an entrance for a virus to get to my inner ear nerve. So that’s just one thing I’ve thought about over the years…wondering if the issue with constipation had any weird connection to developing VN. I wondered if others had this connection?
      I hesitated to share this but VN was the most awful thing I’ve ever been through in my entire life. I’m willing to throw it out there just to see if there’s a possible connection.

      1. Mark Avatar
        Mark

        Thank you for feeling brave enough to share your personal story. Any new insight is valuable. There are many conditions linked with straining. I knew someone that would black out if they strained to hard. I’d be interested to know how you are doing in six months.

  3. Jenny Avatar
    Jenny

    I’m grateful to have found this dialogue. I developed VN a few weeks after the Janssen vaccine. It took months to get a diagnosis and I was in the ER, saw ENTs, orthopedist, neurologists…. My vertigo was so violent, I felt like I was being thrown around and this would last days. I couldn’t see, walk, drive or sleep. I was mostly bedridden. My cognitive function declined. I’m a lawyer and couldn’t read or understand emails and just tried to work through it. Doctors just threw anti anxiety meds at me, refusing to believe I had a real issue even though I’ve never had any prior health issues. My brain shut down and some days I couldn’t move. Thankfully, I had a friend that had vertigo and received physical therapy and pushed me to try it. So I begged my doctor for a PT order and within a week of starting PT at a vestibular specialist, I improved greatly. I’m over 6 months post my initial attack and still improving. I’m mostly back to normal life but it does flare up and take over, although not nearly as severe as it once was. My triggers are allergies and dehydration. Ive found that CBD oil is a lifesaver and helps with the anxiety disorder I also developed due to the prior constant vertigo and lack of sleep. Sadly, most doctors don’t understand this condition. It’s hell. But it does get better. Hope this helps someone suffering. My biggest advice is to find a physical therapist that specializes in it.

  4. John Avatar
    John

    Two pfizer vaccines and booster. No relevance to my 2 1/2 year old persistent VN.

    I am fully functional, but when tired dizziness returns somewhat. Head congestions MAY make it a little bit worse.

  5. Jennifer Avatar
    Jennifer

    I’m so happy to find this! I’m almost 3 months past my vn. I was diagnosed quickly but so frustrated with how long it took to actually get over it. I still get nervous about looking up, and every once in a while I will take a misstep or feel like I’m falling to one side. We have chairs that swivel in our family room and I can’t sit on them unless I’m super still. I would say I’m about 95% better but I sometimes have to search for a word or forget what I’m talking about. I’m also way more tired than I was before.

    First question every doctor asked is when was I vaccinated. Pfizer 2 doses.

    1. Lesley King Avatar
      Lesley King

      Hi Jennifer. So sorry you’ve had to join the club.
      Just out of interest, did your VN come on in relation to the Pfizer jab?

    2. Julia Gonzalez Avatar
      Julia Gonzalez

      Do you think the vaccine caused this?
      I have the herpes virus as I suffer from cold sores and that can trigger this as the virus stays in your body.
      But I wasn’t sure if that vaccine played a part in it. I’m almost on 5 weeks with VN. It’s so awful. I’m sick of feeling like I’m tipsy all day. Just want it to go away. I’ve started my prednisone 12 day taper. See if that helps me. As long as I get better I will be happy. Just scared how long it will take to feel normal again.

  6. Jenny Avatar
    Jenny

    Has anyone tried a COVID vaccine booster after a vaccine-related case? If so, did it impact your VN? My VN occurred after J&J and I would switch to mRNA vaccines if I decide to do it.

  7. Deanne Avatar
    Deanne

    During my recovery period my physical therapist set me up with an app on my phone. It led me through 5 or so exercises I did many times per day to help my left side learn to compensate for my right. I even did these on break at work(once I could return)! Some of the same exercises are posted to YouTube and may be of benefit to you. These exercises helped me immensely. They were very simple to do but dizzying, so proceed with consulting someone first. A good physical therapist was actually the best help to me. He was absolutely the most knowledgeable about my condition and the recovery. I could have done in person appointments but I could not afford them so that is partially why he gave me the exercises on the app. They are short exercises you can do on your own multiple times throughout the day. For example: one is putting a letter on a note card and hanging it on the wall. You stand about 6 or 7? foot from it and move your face slowly side to side but force your eyes to only focus on the letter on the card. I cannot remember number of repetitions but consult a physical therapist and ask about vestibular therapy exercises and if they are right for you.

  8. Mark Avatar
    Mark

    Wow. Thanks for writing this David. I have had acute VN for 2 years now. Tried amitryptalline, ssris, snris, benzos, betahistine, physio, supplements, steroids, all to no avail. Starting to feel mighty helpless. I am a mailman and haven’t been able to work for 2y because I get too much motion sickness from walking. Gravol puts me on my ass. Nice to know I’m not alone and I’m sorry for anyone that has to endure.

    1. Julia Gonzalez Avatar
      Julia Gonzalez

      That sounds awful. You poor thing. Nothing they can do for you at all?
      It’s damage of the nerve. Would they not even try nerve surgery for your condition
      Or is that not possible?
      I’ve had VN for the past 7 weeks but my symptoms weren’t that strong and are easy. It’s mainly my eyes that still feel weird from the balance part. Like when you get drunk and your focus is affected except I’m not drunk.
      I hope you can get some help soon.
      Sorry you are going through this. Stay strong and positive even though I know it’s hard

    2. Helen Avatar
      Helen

      Hi Mark
      I am going on 8 years. And I have tried all of those meds as well. Truly sucks.
      And walking on uneven ground is so hard. I have to hold on to put my shoes on.
      the worst is when people say at least your not dying. Ugh! Dying a little everyday….
      Chronic Vestibular Neuritis does not have a cure. My Doctors say cutting the nerve could possibly
      lead to deafness
      Helen

  9. Suzie Avatar
    Suzie

    I got my VM a couple days after swimming for hours in the Hulf of Mexico myself! Definitely something to tht

    1. Janice Greco Avatar
      Janice Greco

      I have had VN since October 2021, I felt as if I was coming down with something and felt it in my left ear, I never had ear problems, I woke up next more dizzy and nauseous. I only vomited once. After that just dizzy. I went to ENT went for a balance test and started PT but my back problem got worse during this PT time, so now I’m trying to live my life, I know when I need help to balance but I’m tired of having a fuzzy head. What else can I do?

  10. […] concerns, hopes, and fears about the unknown. In my case, my brain short-circuited — see vestibular neuritis. Thankfully, in the months leading up to Jack’s birth, I kept it […]

  11. Alex Avatar
    Alex

    I had VN 4 years ago after a week-long migraine. My doctor prescribed steroids and it helped tremendously – my VN disappeared in about 3 weeks. Then, this past Thanksgiving, I had a dull headache that lasted about a week, and the dizziness/walking like I was drunk/nausea reappeared once again. I went in to see my doctor, and asked for the same steroid treatment again – which did absolutely NOTHING this time around. I think they actually made it worse. So, I patiently waited it out…one month, two months, three months, with the symptoms SLOWLY (maybe 5%) decreasing each week. But, I was still dizzy and afraid I’d have to hold onto things whenever I walked around or bent down tie my shoes the rest of my life. It was very upsetting and I was preparing for the worst, and THEN I stumbled upon my “miracle cure” – espresso. My workplace purchased an espresso machine and although I’m not much of a coffee drinker, I tried one for the heck of it. Within 20 minutes, 99% of my dizziness immediately went away! I recall sitting at my desk and getting up and feeling like the clouds had parted and a “miracle” had occurred. Caffeine is a natural anti-inflammatory, and espresso has a lot of it (as does migraine medication), but unlike steroids, you can consume caffeine every day. And, I do. And, since then, I have ZERO dizziness. It might not work for everyone, but it worked for me, and I’m grateful. Hopefully, it will help someone else, as well.

    1. Dena Avatar
      Dena

      Hi Alex,
      I have just read your post, I have vestibular migraine, the symptoms are identical to Davids desciption of what happened to him except mine wore off after 8 hours but I have had many, many episodes since. This started 7 years ago!
      I found that when I felt a dizzy spell coming on necking an energy drink would more often than not make it go away, the same experience as you had with the coffee. For me it doesn’t always work, if the episode decides it want to go full blown the only thing that will stop it is Diazepam (Valium) taken at the time, not as a daily regime.
      I hope you are still free of this.
      All the best,
      Dena (UK)

  12. Courtney Avatar
    Courtney

    My turn- Woke up last Saturday (4/30) feeling foggy headed. I noticed it while driving and didnt think much of it. Sensation did not go away and go worse at the day progressed. By the evening we tried going out for drinks and I began feeling lightheaded and uneasy on my feet. I thought maybe a tension headache and tried a Tylenol with no reprieve. Went to sleep. Sunday woke up with pressure in my head, mostly my temples but tended to localize on my right side. Still foggy and lightheaded- someone mentioned the sensation of walking on a boat, which describes it perfectly. I chalked it up to stress- I had something personal occur and tried to ignore it. Monday started a ringing in my right ear and noticed my extremities cramping up quickly- resting my head on my hand would cause cramping after less than 1 min. Noticed (maybe due to stress) that I was having difficulties putting thoughts together and remembering words (this has been slowly progressing and i attributed it to COVID which I had back in Feb) Tuesday I took myself to immediate care- Dr ran blood tests and everything came back normal. Looked in my ears and said the drum was turned inward a little which could indicate a blockage in my Eustachian tubes. Suggested nasal spray and continually trying to “pop” my ears. Ringing seemed to dissipate but pressure in head increased. Wednesday the foggy head and boat like sensations continued but I wanted to give it another day. Thursday the pressure near my left temple increased and I couldnt think about anything else. I was convinced there was something pressing on a vessel/nerve. The sensation of tightness started radiating to the left side of my face. I went back to immediate care and they did some more neuro tests and almost had me leave with steroids and antibiotics (in case there was an inner ear infection that was causing the pressure and instability) Dr came back into the room and said based on the localized area of pressure and no history of migraines that I should go to the ER for imaging. Got to ER after a long time, results of CT scan came back normal. Dr suspects VN based on symptoms but the localized intense pressure he couldn’t be certain. Prescribed decongestant and suggested 600mg of ibp to lessen inflammation. Was told to return in 5 days if symptoms didnt improve. IB helped with the pressure but not the boat feeling. I could tell immediately when the effects ran out and needed more to quell the pressure. Today symptoms are still there but lessened by the ib.

    A couple of things to note
    – I have been dealing with ear eczema for over a year and have had ear issues in the past. have been using ALL kinds of things to deal with it aside from an RX. Most recently, a hypochloric acid product sold on amazon for eczema which seems to be helping but not entirely- this could have potentially aggravated something ?

    – I can’t imagine these symptoms are a result of stress (stress usually presents as anxiety for me) but I did have a good friend leave town the day before my symptoms set in

    -I had covid in feb after being tripled vaxxed and did not feel ill at all before symptoms started

    -My symptoms ebb and flow- I can usually wake up and feel fine, the pressure starts ~4 hours after waking and gets better/worse throughout the day

    -My glasses, hat, things on my head feel tighter– inflammation?

    – I do not have “vertigo” only the boat/floaty sensation

    I am hopeful this goes away, I am on day 6 and in this short time has really impacted my day to day.

    If I have VN, this is apparently caused by a virus- I intend to do things to boost my immune system— stress reduction, supplements, celery juice.

    Hope this helps someone.

    1. Courtney Avatar
      Courtney

      Wanted to update my status— After my ER visit, my symptoms slowly began to subside. I took the decongestants and anti inflammatory in addition to a number of immune boosting supplements. I also used LED light therapy on the side of my face, attempted to de-stress. The intense pressure I was feeling on my left temple began to lessen until eventually I no longer felt it there, but a achy pain in my left jaw. I still had a sense of disequilibrium and slight general head pressure. The pain/ache in my jaw/left side of face persisted. I had a fullness in my ears and every once in a while, my left face muscles would twitch. During this whole ordeal I read about ALL of the things my symptoms could possible be from and eventually found myself reading about TMJ. Based on how my symptoms were currently presenting, it sounded probable. My left jaw is not aligned and when I open my jaw fully, juts out to the right and it pops sometimes. It had NEVER given me any trouble before so initially I did not think it had anything to do with it. I applied a heating pad to my jaw area yesterday and when I removed it I yawned and my left ear popped loudly and I felt fairly intense pain momentarily. At this point, it’s impossible to say with certainty exactly what happened, but my symptoms have improved greatly. What remains is some general head pressure, very slight disequilibrium and slight left jaw & ear aching.

      1. Lauren Avatar
        Lauren

        Hi Courtney,

        As I am reading your post, I feel like I am on the same journey and have explored the same possiblities for my symptoms. Shortly after July 4th, I started experiencing dizziness that prompted me to visit my primiary care physician. First, they noticed both my ears were clogged and performed an ear irregation to remove any build up. Unfortunately, that did not help and I returned to the dr a few days later still complaining of dizziness. She recommended I give it a week more before possibly proceeding with an MRI to rule out any serious issues. Fortunately, the dizziness started to subside that following week and I felt pretty much back to normal! My dizziness was never extreme spinning like some have mentioned, but certain environments like the grocery store exaggrebated my dizziness greatly.

        A couple weeks later, I have now started to experience headaches that don’t start until midday – I wake up feeling fine, but the headache sets in around the early afternoon. I end up giving in and having to take advil. I am currently wearing invisalign so I also started going down the path that it could be TMJ related! I have a misaligned bite and experience jaw popping/clicking. I reached out to my Ortho, but he was pretty dissmissive that TMJ was to blame due to it being such a hard condition to diagnose. I have noticed my balance is weaker again, so I am not sure if this is just the ebb and flow of VN until symptoms fully resolve.

        I am so appreciative of your post and for David Morgan who put this blog out in the open to potentially help other people!

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