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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!

72 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.

    • it took 7 months for me to recover, and pyschologically was terrible coming off stemitel then the dizziness coming back, the worst time in my life i do not know what caused it, but it has been gone for 27 years now.

      • Dear Kevin I have had VN for 13 weeks now and I don’t see any improvement. How long did it take you to see an improvement? You also had headaches, strong pressure in your head, dizziness (feeling like you’re on a ship, and sometimes like you’re vibrating).

  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.

    • Dear jdee i have vn for 12 weeks now and i dont se any progress. How long it took foe you to recover?

      • Hi Klementina. I have had it since August. Started therapy in September 3 days a week an hour session. Much better today. The therapy works. Also the dr put me on lexapro for the anxiety of this . It is life changing

  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.

        • I have had Vestibular Neuritis since late July. I had a walker for 2 weeks then a cane for 2 more weeks and finally could walk outside after a month on undeveloped ground. I was tested 3 months after and they said I was 95% good, but the past 3 months I am still loose with my head and eye movements. I am fairly certain mine was caused by Covid-19. My husband had Covid-19 and I was around him before during and after. This happened 2 months after he was sick. I have better days and bad days, but the nausea is gone. I mainly have uneasy felling of lack of concentration, eye head movement problems, and periodic brain fog. Early on I found certain foods and drinks that irritated it, but not as much now. Dehydration is the worst. Its been 6 months and its not completely gone.

      • Hi Kristina
        Sorry for my late reply and I hope you are better at this point.
        No meds worked for me and they all made me tired. Actually
        I am feeling crappy these last few weeks who knows why a flair up
        possibly the vaccine or menopause lol who the heck really knows why.
        But dizzier than normal and driving is a real problem lately I feel things are coming at me very quickly and my reactions are very exaggerated. I am sorry I wish I could state I feel better but I do not. 7 years now. Otherwise completely healthy.

    • Helen – I am in the same boat as you. It has been 3 years post VN for me. I still have episodes that send my head spinning. I can’t type and look to the left or right to any source I am reading. It literally sends my head spinning. The worst is the brain fob and the inability to concentrate. This leads to fatigue (like I want to nap). One this I found is that alcohol or sleep deprivation contribute quite a bit to triggering episodes. Please know you are not alone. There are people out there like you and I that are working through it!

    • Dear Helena. I have VN for 12 weeks now ( also damage on my left side). I do VRT 8 weeks now but its getting worse. I get these strong headaches and very strong pressure in my head and I have a feeling that my whole body is shaking or. vibrates. Did you also had these symptoms?
      When did you get a little better?

      • Hi Klementina
        Sorry no good news still feeling dizzy and brain fog no end in sight. I dont even go to doctors anymore they cant help. I take Betahistine 2x day its a canadian drug who knows if it is helping me at all. I am just trying to do the best I can.
        But shopping in stores is so bad turning my head so many times and the lights, noise it is not an enjoyable situation. Also example went to a Met game.
        I have to look straight ahead no looking down or back. We were with my grandkids and I kept looking back for one in the crowd and I stumble looking forward again it stinks truly.

  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.

  13. David, Thanks for your detailed description of your episodes with Vestibular Neuritis. I’m 73 years old, with Type 1 Diabetes and Tinnitus. I also was stricken with the exact same symptoms in November of 2019 which landed me in a hospital (via ambulance) for 2 days. I was diagnosed as having VN. At home I had to use a walker for a couple of days to avoid bouncing off the walls. My wife had to do the driving for about 3 months including taking me to physical therapy where I was able to make steady progress. Long story short, as of this writing I am able to walk outdoors 2 miles each day with minimal or no dizziness. Although it’s been over a year and I’m not yet back to 100 % , I feel confident that patience and time will help all of us who have been affected by VN . P.S. – I’m still planning in taking part in the Senior Track and Field Competition later this year.

  14. Hi, thanks for writing this. I’m on week 7 and have found that cranial osteopathy helps a bit. My VN was caused by paint fumes. I wish there was a way to warn the public at large. Normal interior paint for wood – nothing extreme. I can only assume that I was over-exposed, as modern acrylic paints are fast drying so you can repaint within a few hours. I did 3 coats of paint on all my kitchen cupboards in the space of one day. The next day I woke up and keeled over. Even with an open window you are only at arm’s length from your paintbrush and it is impossible not to inhale fumes, unless you wear a specialist mask. Most paints are low odour these days so we are not aware of how much we are absorbing.
    I had the same problem though much milder a few months ago and I didn’t link it to painting. I just thought I was getting old and something had gone wrong. The area I’d painted was much smaller. This time around I realised immediately – one day painting, the next day VN? That’s not a coincidence. It’s so debilitating and impactful! I checked the safety data sheet for the paint and one of the ingredients can cause all the symptoms of VN – if you are over exposed to it.
    So please spread the word, people need to know: seemingly benign low VOC interior paint is potentially very harmful.

    • Lesley – as a physician who is still suffering from VN I can assure you the disease is brought on by infection, either bacterial or viral? Many of the viral strains are similar in nature to herpetic strains. Paint vapor, although can give you quite a bad headache will not effect the inflammatory response in the vestibular pathway.

  15. I find all very interesting. My husband Hans has been suffering from VN for 10 years now. The Dr.’s cannot believe it. They kept looking for MS. I knew it was not MS. Now they are starting to believe it. (it is not MS or any other disease) He will suffer an attack, typically in November or December (we never get a Thanksgiving or Christmas since he’s always down) and it takes 6 months for him to recover. He has used a walker since the first major attack (3/7/13) It took him down, he lost his job and his balance and quality of life. I can almost set my watch by the attacks in November. (when the Earth is closest to the Sun & Moon) He had 2 successive attacks recently, Fri the 13th 2020 and again 22 Nov 2020 that took him down. He was on 2 rounds of Prednisone. He takes heavy doses of Meclizine and Xanax to sleep. We are on day 96. I believe over 10 years we have lost 5 years to recovery and we are done. He is working with MI Ear Institute, Dr. Bojrab and Dr. Jacob who is a Neurosurgeon. We are trying to discover if he can have the bad left vestibular nerve disconnected so it no longer fights with the good right vestibular nerve.

  16. Hi David – I was on a business meeting in Lisbon when I came down with VN. My experience was exactly like yours. Too tell you the truth within 3 days of being confided to a Marriott hotel room in a foreign country, I started to panic. I ended up in a public hospital and then in a private as I learned as a foreign citizen, a public hospital in the last place you want to go to to seek medical assistance. Anyways, after I returned home I saw a specialist who properly diagnosed me with VN. He was a Johns Hopkins grad who had the pleasure to share with me that “I was the worst case he has every seen”. I lost 90% of my vestibular function on my right side due to a viral infection. Most likely it is the same virus responsible for the chicken pox or shingles (the same). I had shingles prior and most likely stress released the attack. Its been 3 years now and I still have episodes. The worst is the brain fog and inability to concentrate. I swear I would rather lose a limb then to go through this again. It literally in the worst torture you can imagine. I hope that more science is poured into treatment, but from what I have learned it is all about neurological adaptation. You brain and visual system have to start agreeing with your focal point. A most difficult task to say the least.

  17. My condolences to all of you suffering from this disease. I am in my late 70’s….had first episode January 2020. Suffered all the same symptoms. My husband rushed me to urgent care because he thought I could be having a stroke. Anyways….I have not fully recovered and from what I have read, this may never go completely away. My ears will clog up especially with weather changes. Not so much ringing… it sounds like rushing water. I agree with the doctor that posted….I am convinced that mine was caused by the same virus that causes fever blisters. But I am amazed though that the specialists cannot come to a real conclusion as to the cause or come up with a cure. What a blessing that would be for all of us whom suffer from this disease.

  18. Hey David, thank you so much for this. I actually got VN from the first dose of the pfizer vaccine. Rare occurance so dont let it turn you off of getting vaccinated. I am on about 35 days now since onset and like you said, I think I am getting better, I mean kind of. The 3 month time frame gives me a lot of hope and that is exactly what my VN therapy doc told me. First month is damage control, second month is the big gains, and third is that final 15%. Hoping it is all on track for me. 32 years old, healthy, jog 5 days a week along with working out, don’t smoke, drink. VN completely destroyed my way of life but I am adapting. Thanks again – Sean

    • Sean, thanks for sharing. Very interesting you say that about the vaccine. The vaccine seems to produce covid type symptoms in many people and I have thought my Case of VN was caused by covid. Covid tests didn’t exist in Dec 2019 so I was never tested. My headaches and dizziness were long lasting (over a year) and I still get the lightheaded/dizziness, just less often now. I can’t help but think it is a covid long hauler case. Unfortunate the vaccine gave you VN. It’s no fun at all. I was almost 39, highly fit and active when I got the VN.

      • Hey Mack,

        I saw your post above as well. Any idea what attribute to the headaches? They think I have recurring migraines now (never had migraines before) and terrible severe headaches off and on. The dizziness finally left me a few weeks ago. It’s been about 4 months now since all this. They just have me on migraine and headache meds now. When did you notice headaches to go away? Anything in particular help? Is that a common after effect of VN? Thanks in advance

        • I still don’t know for sure what caused and is still causing the headaches. My ENT said headaches were not common with the bppv I was initially diagnosed with. I personally think covid was the origin of all my headaches and dizziness issues. I definitely had covid bc I tested for antibodies awhile back and I think it was when I first got the vestibular neuritis in December 2019 (covid tests weren’t done then.) I think covid is behind all of this but docs can’t be sure. I actually got the headaches and dizziness back again this week. They had been gone mostly since March 2021 but seems this never fully goes away. I’m on my 20th month of this but at least the headaches and dizziness are more sporadic than the first 10 months. I had them daily the first 10 months. Then they seem to come every 3 months. I’m going back to doctor this week to see if maybe something is wrong in my neck; trying to rule out the things one at a time. I never had migraines and I don’t belive what I have is migraines. No OTC meds work for me. What is working for you? All I do is wrap ice bags on my head and neck and try to take it easy.

        • Dear Sean im 3 month in and about two weeks i have very bad very powerful headaches and very bad pressure in the head and the feeling of vibrating. Did you also had these symptoms ?

        • Hi Klementina,

          Do you know what caused yours? Was this vaccine related or other? I am approaching 5 months and still have terrible headaches, pressure, all of the above. Doctors are now thinking I have recurring migraines constantly. They put me on a double prednisone taper (12 days) at just over 3 months and it was the first time the dizziness went away and the headaches went away as well. The dizziness is pretty much gone at this point following the taper but I do have bouts from time to time. We think it is now vestibular migraines triggering. I was feeling pretty good the past month or so, so I attempted to workout again Monday and Tuesday of this week, and severe head pressure, migraines, nausea returned. Doctor also thinks this may all just be an inflammatory response to the vaccine, so anything that gets my heart rate up, working out, cardio, causes blood pressure increase may be causing returning head pressure and pain. As of right now the things that have worked are Amitriptyline nightly, Ajovy injection for migraines, Migrelief twice a day for magnesium and riboflavin which apparently help with migraines, and staying away from certain foods. I also notice caffeine more than a few days a week start to cause a burning type headache. Its all a mess but the above treatment provided relief until trying to work out again.

        • No, I’m not vaccinated. Headaches that last for hours I have them for about two weeks. I do not know why. Dizziness is still present

        • Vestibular migraines could absolutely be the case for you, keeping headaches recurring and dizziness

      • Dear Mack. I have VN for 12 weeks now. Did you also had these headaches and bad head pressure and your eyes also hurt and you saw foggy? Are you ok now. How long did you needed to get well?

        • Klementina, at 12 weeks into my VN journey I was still having headaches, mainly the lower back of my head everyday. My dizziness and pressure was a lot less than the first three months but notably still there. I have kept a calendar of my symptoms since Dec 2019 and tracked these same issues for 10 month plus. They do subside over those months but didn’t fully go away permanently. Now I tend to get them every 2-3 months and the headache and dizzy and pressure will last maybe a week or two. It’s lingering but has improved since the first few months of getting it. I use alot of ice packs when the headaches come back.

    • I replied to this thread back in November. I had what I thought to be a cold on Nov 2nd and had experienced some vertigo. I had VN a couple years prior but had not been sick since then. I was researching if people who had VN had issues with reoccurring vertigo with common colds etc- post VN. Well, what I didn’t know when I posted here Nov. 2 was that I had COVID-19. During my bout with COVID-19 I had periods of mild vertigo (MUCH less than with my VN experience). But the vertigo I began experiencing gave me so much anxiety as I feared I was going to have another VN experience, which I honestly could not bare the thought of. Thankfully the vertigo remained mild during my COVID-19 illness and it did subside.
      Now I am struggling with whether to get the vaccine because I feel I am already susceptible to vertigo with viral infections. I never had vertigo in my life with any illness before I had VN. Now I think vertigo may be something I deal with every time I get sick. Curious to know if other people who have had VN have vertigo episodes when ill?
      By the way, I think it’s kinda funny that we have all come here for support and are learning from one anothers story but we are missing David Morgan in our discussion. Lol…Not sure he realizes how helpful his post was to all of us struggling and putting together the pieces in our VN experience:)

    • Hi Sean I was actually diagnosed with VN following my second phizer shot. I’m 26, very active and this has completely slowed me down! Good news is though I am seeing improvement. I’m about 12 weeks since the onset of symptoms. I’m back to work and driving. Vestibular rehab has been very helpful! Hope you feel better soon hang in there!

      • Dear Jessica i have VN for 3 months now. Can you please tell if you had bad very strong pressure in your head, as if your head is going to explode?

        • Klementina and Sean,
          Your posts and symptoms sound exactly like mine. After 9 or 10 months, the headaches, lightheaded ness, pressure and dizziness became more sporadic occurring every couple months but lasting 2 weeks usually. I’m now 21 months in. The road is long. Maybe never ending. I was not offered any of the meds Sean mentioned so will look into. I’m also trying to find a new doctor bc none so far know anything. Do either of you think yours came from covid?

    • Hi! This is my exact situation. I’m on week 5. Can you tell me how you’re feeling and what helped if anything? This is absolute hell. I need a good recovery story

      • Hi Danielle,

        I am now at the 5 1/2 month mark. On month three they finally put me on a 12 day prednisone taper at 3 months that on day 4-5, my dizziness went away for the first time. I would suggest doing this earlier on at your current 5 weeks and not wait as long as I did if you can get a doctor to wait. Now I am dealing with migraines and headaches that I really didnt have before. They also have me refraining from anything that gets my heart rate or blood pressure up as they think it is an inflammation issue now, higher heart rate, higher blood flow, pressure returns in my head etc.

        I am feeling pretty good overall now but my treatment was prednisone, and now amitriptyline nightly, magnesium and riboflavin, Ajovy injection and diet (all of these for migraine prevention). Limiting anything that gets my heart rate or blood pressure up (these for the inflammation). Ibuprofen and Tylenol for headaches.

        I understand where you are at, coming from someone that ran every morning and worked out 5-6 days a week, 32 years old, healthy, to not being able to do any of that for a long time now. I can tell you however that there is light at the end of the tunnel. I am hoping in your case the prednisone and inflammation awareness may help you get ahead of me on the timeline here. Reach out to me if you need anything at all or have any more questions please!

  19. Hi all!
    Agree with Deanne, it’s funny how David’s post has brought us all here! I’m in London in the UK, and just over two months since things went awry. I gave blood then had a root canal. In the evening things started to feel very unsteady when I moved my head and had a woeful few days of feeling rotten. Still not formally diagnosed but pretty sure it’s VN, down to an awakening of the chicken pox virus which floored me in 2012. Echo a lot of the other thoughts, it’s a long, long haul, a 1% improvement on a day-to-day basis. Took a while to get back to doing yoga and that’s helped for sure, but the unsteadiness whilst walking is still here and also the brain fog. I get very tired from doing anything ‘cerebral’ and head turns even now make me feel as if there’s something swooshing/sloshing around inside, though that feeling has gradually (and almost imperceptibly) improved. Strangely enough, cycling and swimming are fine and I can ‘forget’ that something isn’t quite right. I suspect it’s down to your body being supported so your brain doesn’t have to worry about balance!
    Patience and good wishes to everyone going through this condition! I’m also inspired by Alicia Molik’s story, the pro tennis player, she came through this as well, it took her over a year to get better…

  20. Has anyone that has had VN and later gotten the Covid vaccine experienced any flare ups after the vaccine?

    • I recieved my 1st shot so far of Pfizer. I get the second in 2 weeks. I did not have an VN symptoms with the 1st shot. I did have a headache and fatigue all day for 1 day but no dizziness or balance type issues. I am hoping I am as fortunate for the 2nd shot. I will keep you posted.

  21. Oh my goodness. Thank you for this. My and your journey so far has so many similarities! I am nearing 3 weeks in, and am struggling with depression due to the miniscual daily improvements. My daily tasks as a teacher, mom and wife have definitely been out in hold snd I am desperately awaiting the day when I can return to some sort of normalcy!

  22. Having had VN recently and misdiagnosed including starting with being treated for a stroke and 3 days in hospital learning to walk and balance again on my own. Fortunately, I found a neurologist shortly after being discharged and he diagnosed with VN and prescribed a high dose prednisone for 5 days which gave my recovery a huge kick start including being able to start to drive and return to work shortly after. Still struggle with fatigue and some slight balance issues 3 months on but understand that will improve in time.
    Hope this helps! But the prednisone made the difference between walking straight and not falling over to improving my quality of life.
    Anti-Virals are supposed to help but need to be administered in the first 72 hrs.
    Don’t wait to get help!

  23. Good morning David
    thank you for the information… I contracted VN in March of 2019 and still have it. Doctors saying it should last no longer than a few weeks is bogus. I have been through three rounds of a specialty physical therapy that is designed especially for VN and it helped, like you say maybe 1%. Over the past two years, fortunate for me I can drive, but my VN has settled down to constant dizziness – no quick turns, standing up or bending over and VERY carefully walking to where I need to go. I have fallen a couple of times which have not been good. I was treated with Rx’s but nothing worked. The specialist I saw said there is no cure… after all this time – I believe it.

    • Hi Roxanne. I am in the same boat (June 2019). Fatigue is my biggest issue along with depersonalization issues. I have found Lexapro to be helpful slightly with anxiety that accompanies this disorder. Just enough so I can barely get through work. I have found pain pills (I know – I know) to be the only effective medication for my neurological condition. The obvious issue is these should not be taken without close medical supervision. I would also suggest, if you enter this road, to reduce addiction issues, taking 3 days on and 4 days off. Three days of relief is better than no days of relief. I have found Oxycodone helps whereas Hydrocodone only kind of helps. Before this, I despised taking pain medication bc of the drowsy effect. Ironically, now with VN, pain medication does not make me feel drowsy. I have been given Modafinil and Adderall to help with the exhaustion. Modafinil was ok; Adderall sent my body into overdrive. Stimulants were not the way to go. IDK if this info helps, but if it does, please let me know how it goes.

  24. Omg, a story just like mine. I’m so glad it got better for you and I appreciate hearing your timeline for resuming some sports.
    I’m at week 2. It landed me in the emergency room with constant violent spinning and vomiting. I got the correct diagnosis and steroid medicine quickly. the super horribles lasted about 3 days. I’m driving just fine and working out normally, but I’m left with a lightheaded feeling. And the oddball factor for me is that I do figure skating! I tried the ice for the first time today, and it’s just too soon. I’m staying optimistic that I’ll do well because of my overall good health and many years of balance training. I hope I’m right.
    To anyone who answered here, please, please keep going. May good vibes and healing energy always find you <3

  25. 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.

  26. 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

    • 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.

      • 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.

  27. 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.

  28. 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.

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