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. G.J. Zemliauskas Avatar

    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.

    1. Cherie Avatar
      Cherie

      Your comment has inspired me. I have all these symptoms but they can’t tell me which vestibular disorder I have yet.
      I’m 52 and you’ve inspired me

  2. Lesley Avatar
    Lesley

    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.

    1. kevin Avatar
      kevin

      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.

      1. dave norton Avatar
        dave norton

        I got it 5 days after a 1.5 hour tooth extraction and dry socket. there may have been bacterial infection. week 8 and still no relief , they thought it was crystals.
        never had the severe acute stage though but did have headaches,tired and couldn.t work on the computer long
        just slightly dizzy and off and head feels full and the ear can feel like it needs to pop sometimes. some days are not that bad while others it is hard to focus

  3. alexandra Houston Avatar
    alexandra Houston

    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.

    1. Danny Avatar
      Danny

      Hi. Sorry to read about this. I myself have VN and I have had it for 5 years. Like your husband it affects my left ear. I also feel like I have lost my quality of life. Interesting to read that the left vestibular nerve can be disconnected. Have you managed to explore this option further? And what are the risks as far as you are aware. Please please please get back to me. There’s literally nobody else thar has ever mentioned this to me. Thank you.

  4. Kevin Cady Avatar
    Kevin Cady

    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.

  5. Peggy Avatar
    Peggy

    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.

  6. Sean Avatar
    Sean

    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

    1. Mack Avatar
      Mack

      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.

      1. Sean Avatar
        Sean

        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

        1. Mack Avatar
          Mack

          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.

        2. Klementina Avatar
          Klementina

          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 ?

        3. Sean Avatar
          Sean

          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.

        4. Klementina Avatar
          Klementina

          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

        5. Sean Avatar
          Sean

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

      2. Klementina Avatar
        Klementina

        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?

        1. Mack Avatar
          Mack

          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.

      3. Cristina Avatar
        Cristina

        Hi, I m 3 days in VN and all the puzzles lead to COVID. I m 40 and dealing with a lot of headaches, dizziness brain fog and fatigue…i can’t last more then 15 min in the kitchen or even take a trip to the grocery store. All the movement, noise, lights just exhaust me immediately and lose stability and balance. Also it’s very easy to get thrown into anxiety as u don’t have control over what happens. I m having an appointment next to try and calibrate the crystals in my ear and hopefully that will help some. It’s a terrible feeling and I m scared to grow older with this conditions…I have so many plans. Anyway I also have a really tough time concentrating and expressing the right words I always take a few seconds to focus on what I need to say and people names don’t come very easy also struggle remembering things.
        I m happy to find this blog and give u hope that doesn’t last forever and gets some what better with time

        1. Dena Avatar
          Dena

          Hi Cirstina,
          It’s hard to say what works until you get a diagnosis. 7 years ago I had a copycat experience as described by David but it wore off after 8 hours and left me feeling hungover for about 3 days. The bad news is that I have had countless episodes since, all lasting about the same time. I have been diagnosed with Vestibular Migraine. If I get a cold, covid or flu type illness it will trigger a VM episode.
          Typically I would get an episode every two to three months but in November it accelerated and I lost 54 days to it over a 90 day period. I had done all sorts of research into this. Apparently VM is triggered by proteins that land on neurons in the brain. When I discovered that I went to the doctor and asked him to prescribe Diazepam (Valium) to take on a need only basis working on the principal that if the protein was making my brain quirk, then tranquilizing my brain might help. It works, every time.
          The difference between VM and VN is that VN is caused by an infection, VM is an ongoing condition just as it it for regular migarine suffers so managing the condition is ones only hope.
          This is also stress related so I recently started taking CoQ10 and Magnesium as this is supposed to help with migraine, I also take L-Trytophan and Taurine at night for stress.
          I am a calm non reactive person and the stresses of life go silently inward so it is important to have something that calms the brain.
          I hope this information helps you. Since starting the CoQ10 and Magnesium I went a whole 18 days before getting an episode, that is a big improvement to every two to three days as I was experiencing.
          I hope this information helps, problems relating to balance are many and it is difficult to know how to treat it until you know exactly what you are dealing with.
          All the best,
          Dena (UK)

    2. Deanne Avatar
      Deanne

      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:)

    3. Jessica Avatar
      Jessica

      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!

      1. Klementina Avatar
        Klementina

        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?

        1. Mack Avatar
          Mack

          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?

      2. Danielle Ivins Avatar
        Danielle Ivins

        Hi! Could you tell me how you’re feeling now?? Did it ease up for you?

      3. Julia Gonzalez Avatar
        Julia Gonzalez

        Hi,

        I had my second vaccine months ago. Now I have VN for the past 4 weeks. It’s torture. I just feel drunk. I can’t shake this feeling.
        How long did it take for you to get VN after getting your second shot? Do you really feel it’s from the vaccine?
        I’m glad you are feeling your symptoms getting better

    4. Danielle Ivins Avatar
      Danielle Ivins

      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

      1. Sean Avatar
        Sean

        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!

        1. Julia Gonzalez Avatar
          Julia Gonzalez

          Hey Danielle,

          Do you think I should go to my doctor and try having prednisone now?
          They only put me on it for 3 days. Did nothing. It was 25mg.
          I just feel like I’m drunk all the time. It’s the worst feeling. Just want something to help me.

        2. Julia Gonzalez Avatar
          Julia Gonzalez

          Also what mg of prednisone did you take?

        3. Sean Wiseman Avatar
          Sean Wiseman

          Hey Julia,

          They put me on a 12 day taper

          4mg x6 for two days, 4mg x5 for two days, 4mg x4 for two days, 4mg x3 for two days, 4mg x2 for two days, 4mg x1 for two days

          Dizziness got significantly better around day 6-7 for me

        4. Julia Gonzalez Avatar
          Julia Gonzalez

          Oh ok. Thank you
          They put me on 25mg for 3 days when I had it for 2 weeks and then a week later we tried it again but I didn’t see any change but it was only 3 days. Perhaps I will speak to my doctor about this. I just feel tipsy all the time. I hate this feeling.

        5. Kevin Avatar
          Kevin

          Julia – I “came down” with VN when I was traveling abroad in Lisbon 4 years ago. Literally was on my Death Bed! Took over 6 months before I started to feel “normal” but still to h=this day I have my episodes. Dizzy, brain fog, can’t walk straight in the dark, etc. DO NOT get the vaccine. I received the J&J and within days my VN was triggered again. The vaccine causes a inflammatory response in your nervous system, therefore it will trigger your VN. Also, more than anything, sleep deprivation is a big tirgger. Not sure if this is the same for others, but for me it is so debilitating. Kevin Cady

        6. Julia Gonzalez Avatar
          Julia Gonzalez

          I already had both vaccines months ago. Never reacted to them back then. They said it’s my cold sore virus I have in my body which causes VN. I can walk in the dark and all day without losing any balance. I just feel drunk within myself and how my head is.
          I won’t be having the booster shot or any other vaccine though to be safe. But this should subside by 12 weeks I am being told. As my symptoms are getting better with each day. I’ve started my 12 day prednisone taper which should bring the inflammation down quick. I hope you recover soon.

  7. Jason Hill Avatar
    Jason Hill

    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…

    1. Kate Avatar
      Kate

      Hi Jason, I’m Kate and I live in Scotland. 7.5 weeks from onset and pushing myself to get back to everything I love doing (running, surfing etc.) I would say that I have residual floating sensation and that same weird feeling when moving the head quickly to the side etc. the most concerning symptom for me has been this brain fog feeling or feeling I don’t feel quite the same. More tired easily when concentrating on tasks etc. I wondered if years on you will be able to tell me there is light at the end of the tunnel? Many thanks

  8. Mack Avatar
    Mack

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

    1. Deanne Avatar
      Deanne

      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.

      1. Mack Avatar
        Mack

        Thanks. Glad to hear. Please do update after the second shot.

        1. Deanne Steele Avatar
          Deanne Steele

          I had my second shot a few months back. I had no issues with a VN flare up with my vaccinations. Thankfully.

        2. Mack Avatar
          Mack

          Thanks for sharing. Good to know.

  9. Mende Avatar
    Mende

    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!

  10. David Hill Avatar
    David Hill

    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!

  11. Roxanne Avatar
    Roxanne

    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.

    1. Mark Avatar
      Mark

      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.

  12. Kori Avatar
    Kori

    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

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