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.
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.
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.
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.
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!
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,
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, 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.
Hi there. So good to hear you are not alone when you read these stories. My VN started beginning of October and now ,3 months on am a lot better but still suffering with headaches ,mild daily dizziness and nausea. Fatigue has been an issue aswell. I have just started vestibular rehabilitation at the physiotherapist today. Anxiety was a huge problem for me in the first 2 months. I used Relicalm (South African product) which is a natural amino acid ,L-Theanine. Absolutely did wonders for me. And I avoided / cut back on stimulants like caffeine,alcohol etc. Teduced my anxiety immensely. All the Best,Brigitte.
I’m on week 4 of VN. It is awful. I push through and get through my days being a single mum. But reading your post, gives me hope that I will get there. I agree “ I wouldn’t wish this on my worst enemy”
At the start it was so debilitating. I just want to feel normal again. I hope my symptoms ease quicker than 3 months. I don’t know how I will last that long.
I am a registered nurse for over 20 years. In my career, this is the first time I ever heard of this illness or experienced it. It’s AWFUL. My experience with vestibular neuritis started 2 weeks after hysterectomy. Vertigo, nauseous and swaying to the right side. After visits to the ER, I was referred to an ENT. They immediately ruled the crystals being dislodged and recommended an MRI of the brain amd a VNG study. MRI of the brain was negative and the VNG was the key indicator to diagnose me with vestibular neuritis. From onset of symptoms to an actual diagnosis took 6 weeks. I was prescribed high dose steroids for 12 days ( awful made me jittery and had the shakes) but definitely helped reduce the pressure in my ear and I started feeling better.
I’m also in vestibular therapy 3 x a week and do exercises at home. I will tell you IT WILL GET BETTER but it does take time. I’m on week 10 now, but nothing like how I felt when this all started. I encourage you to get out of the bed chair and walk and start out with small chores and activities around the house. Practice cookley hawthorn exercises as well which helped me alot. Wishing you all he best and STAY STRONG!
It’s definitely been my experience that VN is not really understood well by most, even within the healthcare world. When I went to the ER, a doctor came in, didn’t even examine me, waved it off as BPPV. So of course they said I would be fine in a couple of days. That was 4 months ago, and while I’ve gotten so much better, I still struggle with dizziness and almost nonexistent balance daily. Every time I get sick, which seems like a whole lot more now, it gets worse for a while. I’ve done PT which helped but it seems like some of these symptoms will never go away. I couldn’t drive for 2 months, so at least I am able to do that now. I am sorry for everyone who has gone through this, and I am glad to see I’m not alone In experiencing symptoms for this long. It’s so hard that everyone around me has no idea how difficult this is, and how difficult it makes every single task.
Hello all, I have been suffering from vertigo which has now become VN , so I think. The daily dizziness is now much better after a month and half – I am still on Betahistine- but I cut my tablet into half. Feel very groggy and sleepy with the full dosage. My problem now is that I feel very uncomfortable talking to a crowd of people and can only look straight comfortably. After being to a store, I am so exhausted and tired that I come home and sleep after store walking for about 1/2 – 1 hour. Is anyone facing this problem? My neck is mostly stiff too. Most of all I stress about my condition and those nights I don’t sleep well. I learnt some exercises but the up and down movement with the neck is the worst and makes me nauseous and slightly dizzy. If anyone else is having my symptoms, please reply back, would love to hear. Thankyou.
Hi. Did you or anyone experience sensitivity to light and grainy vision as a symptom on top of the dizziness? I’m battling with that part of it the most. It’s been one month for me now.
I experience(d) some sensitivity to light, especially bright fluorescent lights and looking at screens. I don’t have the grainy vision, however, could imagine that this comes when your eyes try to compensate for the movement of the vertigo you’re experiencing. Have your symptoms gotten better since you published your post?
Thank you for this very helpful post. When even doctors don’t know what’s going on, it gets frustrating.
I have had vertigo now for at least 10 periods of time.
One definite link I can make to my vertigo now is drinking alcohol and soda – like PEPSI AND COKE.
For me, this is the #1 link I have found to my vertigo.
Yes, I have been foolish enough to keep drinking them. However, at this point, I think it is imperative that I stop them for good because the link is undeniable.
I have had a PT show me exercises to help. It involves pasting the letter M to a wall and moving my head slowly. It is not a cure, but it helps.
Benadryl helps, but not when it is really severe.
I appreciate everyone’s comments. I plan to try steriods for this episode. I haven’t tried it yet.
Can we talk about the MUSCLE ACHES? My muscles are ON FIRE! They are so frustrated by being under this constant pressure of instability. Magnesium helps with it, but it also seems to aggravate my vertigo so it’s hard to convince myself to take it.
This episode happened while traveling so I’m forced to cancel all future plans, stay put, and ride this one out.
Thanks to all for your shares. It helps to know I’m not alone. That said, I wish none of us to be inflicted with this or any other forms of dis-ease.
Take care and thanks again.
God bless you! I have exactly the same experience and symptoms. Even my triggers are the same…thank you for the letter M exercise.
My therapist made me sit on an exercise ball and jump up and down while focusing in one spot. It also helps…keep up the good work. You are not alone! We will win this battle! All of us!!!
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).
Hi Elizabeth. How are you feeling now after your post almost 2 years ago? I have been diagnosed with VN by the ENT and I’ve had it for 5 weeks so far. It’s absolutely awful. Thanks. Ionica
Can either of you provide an update ? I am on my 4th week and struggling terribly! Any help is appreciated.
Hi, I too have been diagnosed with VN, my doctor thinks it came on after a bout of pink eye that didn’t clear through 1 antibiotic then given a 2nd dose. I ant a gym person and cannot go due to this, I can’t drive most days. I dont want to lose this much time enjoying life but I guess I’m going to. Its been 2 weeks and my husband doesn’t get how it feels, you never feel good. I am hopeful reading these stories. Good luck all.
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!
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
What therapy did you start?
I’m struggling with this VN and it’s only been 4 weeks for me.
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.
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
I’m going to the ENT Monday and I’m on week 3. It’s like a roller coaster ride where it comes and goes. It all happened after I got over a cold. How long does VN last and any medications help? Looking for answers
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.
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.
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.
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?
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.
Hi there. I hear you. Mine also went undiagnosed for 3 months. I’m doing vestibular rehab at physio. And I’m looking into Vit B1 and B6 spplementation for 3 weeks. Recommended by doctor as cure for Menieres disease. Going to ask my doc to do it under her supervision. Got nothing to lose trying this. All the best,Brigitte.
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.
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.
Dear Lara How long it took for you to recover? I have Vn for 12 weeks now.Did vou also had headache?
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?
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.
Minmin—does your doc think the covid caused the VN? Curious.
I also developed symptoms of sever VN after contracting covid. Every single post is right on the money. This is the most demoralizing and debilitating thing that has ever happened to me. Wishing you the best of luck. Have you made any progress?
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.
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.
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
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.
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
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.
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.
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.
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.
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.
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 ?
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! Could you tell me how you’re feeling now?? Did it ease up for you?
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
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
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!
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.
Also what mg of prednisone did you take?
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
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.
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
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.
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…
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.
Thanks. Glad to hear. Please do update after the second shot.
I had my second shot a few months back. I had no issues with a VN flare up with my vaccinations. Thankfully.
Thanks for sharing. Good to know.
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!
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!
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.
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
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.
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.
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.
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.
I’m so happy to find this! I’m almost 3 months past my vn. I was diagnosed quickly but so frustrated with how long it took to actually get over it. I still get nervous about looking up, and every once in a while I will take a misstep or feel like I’m falling to one side. We have chairs that swivel in our family room and I can’t sit on them unless I’m super still. I would say I’m about 95% better but I sometimes have to search for a word or forget what I’m talking about. I’m also way more tired than I was before.
First question every doctor asked is when was I vaccinated. Pfizer 2 doses.
Hi Jennifer. So sorry you’ve had to join the club.
Just out of interest, did your VN come on in relation to the Pfizer jab?
Do you think the vaccine caused this?
I have the herpes virus as I suffer from cold sores and that can trigger this as the virus stays in your body.
But I wasn’t sure if that vaccine played a part in it. I’m almost on 5 weeks with VN. It’s so awful. I’m sick of feeling like I’m tipsy all day. Just want it to go away. I’ve started my prednisone 12 day taper. See if that helps me. As long as I get better I will be happy. Just scared how long it will take to feel normal again.
Has anyone tried a COVID vaccine booster after a vaccine-related case? If so, did it impact your VN? My VN occurred after J&J and I would switch to mRNA vaccines if I decide to do it.
During my recovery period my physical therapist set me up with an app on my phone. It led me through 5 or so exercises I did many times per day to help my left side learn to compensate for my right. I even did these on break at work(once I could return)! Some of the same exercises are posted to YouTube and may be of benefit to you. These exercises helped me immensely. They were very simple to do but dizzying, so proceed with consulting someone first. A good physical therapist was actually the best help to me. He was absolutely the most knowledgeable about my condition and the recovery. I could have done in person appointments but I could not afford them so that is partially why he gave me the exercises on the app. They are short exercises you can do on your own multiple times throughout the day. For example: one is putting a letter on a note card and hanging it on the wall. You stand about 6 or 7? foot from it and move your face slowly side to side but force your eyes to only focus on the letter on the card. I cannot remember number of repetitions but consult a physical therapist and ask about vestibular therapy exercises and if they are right for you.
Wow. Thanks for writing this David. I have had acute VN for 2 years now. Tried amitryptalline, ssris, snris, benzos, betahistine, physio, supplements, steroids, all to no avail. Starting to feel mighty helpless. I am a mailman and haven’t been able to work for 2y because I get too much motion sickness from walking. Gravol puts me on my ass. Nice to know I’m not alone and I’m sorry for anyone that has to endure.
That sounds awful. You poor thing. Nothing they can do for you at all?
It’s damage of the nerve. Would they not even try nerve surgery for your condition
Or is that not possible?
I’ve had VN for the past 7 weeks but my symptoms weren’t that strong and are easy. It’s mainly my eyes that still feel weird from the balance part. Like when you get drunk and your focus is affected except I’m not drunk.
I hope you can get some help soon.
Sorry you are going through this. Stay strong and positive even though I know it’s hard
I am going on 8 years. And I have tried all of those meds as well. Truly sucks.
And walking on uneven ground is so hard. I have to hold on to put my shoes on.
the worst is when people say at least your not dying. Ugh! Dying a little everyday….
Chronic Vestibular Neuritis does not have a cure. My Doctors say cutting the nerve could possibly
lead to deafness
I got my VM a couple days after swimming for hours in the Hulf of Mexico myself! Definitely something to tht
I have had VN since October 2021, I felt as if I was coming down with something and felt it in my left ear, I never had ear problems, I woke up next more dizzy and nauseous. I only vomited once. After that just dizzy. I went to ENT went for a balance test and started PT but my back problem got worse during this PT time, so now I’m trying to live my life, I know when I need help to balance but I’m tired of having a fuzzy head. What else can I do?
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I had VN 4 years ago after a week-long migraine. My doctor prescribed steroids and it helped tremendously – my VN disappeared in about 3 weeks. Then, this past Thanksgiving, I had a dull headache that lasted about a week, and the dizziness/walking like I was drunk/nausea reappeared once again. I went in to see my doctor, and asked for the same steroid treatment again – which did absolutely NOTHING this time around. I think they actually made it worse. So, I patiently waited it out…one month, two months, three months, with the symptoms SLOWLY (maybe 5%) decreasing each week. But, I was still dizzy and afraid I’d have to hold onto things whenever I walked around or bent down tie my shoes the rest of my life. It was very upsetting and I was preparing for the worst, and THEN I stumbled upon my “miracle cure” – espresso. My workplace purchased an espresso machine and although I’m not much of a coffee drinker, I tried one for the heck of it. Within 20 minutes, 99% of my dizziness immediately went away! I recall sitting at my desk and getting up and feeling like the clouds had parted and a “miracle” had occurred. Caffeine is a natural anti-inflammatory, and espresso has a lot of it (as does migraine medication), but unlike steroids, you can consume caffeine every day. And, I do. And, since then, I have ZERO dizziness. It might not work for everyone, but it worked for me, and I’m grateful. Hopefully, it will help someone else, as well.
My turn- Woke up last Saturday (4/30) feeling foggy headed. I noticed it while driving and didnt think much of it. Sensation did not go away and go worse at the day progressed. By the evening we tried going out for drinks and I began feeling lightheaded and uneasy on my feet. I thought maybe a tension headache and tried a Tylenol with no reprieve. Went to sleep. Sunday woke up with pressure in my head, mostly my temples but tended to localize on my right side. Still foggy and lightheaded- someone mentioned the sensation of walking on a boat, which describes it perfectly. I chalked it up to stress- I had something personal occur and tried to ignore it. Monday started a ringing in my right ear and noticed my extremities cramping up quickly- resting my head on my hand would cause cramping after less than 1 min. Noticed (maybe due to stress) that I was having difficulties putting thoughts together and remembering words (this has been slowly progressing and i attributed it to COVID which I had back in Feb) Tuesday I took myself to immediate care- Dr ran blood tests and everything came back normal. Looked in my ears and said the drum was turned inward a little which could indicate a blockage in my Eustachian tubes. Suggested nasal spray and continually trying to “pop” my ears. Ringing seemed to dissipate but pressure in head increased. Wednesday the foggy head and boat like sensations continued but I wanted to give it another day. Thursday the pressure near my left temple increased and I couldnt think about anything else. I was convinced there was something pressing on a vessel/nerve. The sensation of tightness started radiating to the left side of my face. I went back to immediate care and they did some more neuro tests and almost had me leave with steroids and antibiotics (in case there was an inner ear infection that was causing the pressure and instability) Dr came back into the room and said based on the localized area of pressure and no history of migraines that I should go to the ER for imaging. Got to ER after a long time, results of CT scan came back normal. Dr suspects VN based on symptoms but the localized intense pressure he couldn’t be certain. Prescribed decongestant and suggested 600mg of ibp to lessen inflammation. Was told to return in 5 days if symptoms didnt improve. IB helped with the pressure but not the boat feeling. I could tell immediately when the effects ran out and needed more to quell the pressure. Today symptoms are still there but lessened by the ib.
A couple of things to note
– I have been dealing with ear eczema for over a year and have had ear issues in the past. have been using ALL kinds of things to deal with it aside from an RX. Most recently, a hypochloric acid product sold on amazon for eczema which seems to be helping but not entirely- this could have potentially aggravated something ?
– I can’t imagine these symptoms are a result of stress (stress usually presents as anxiety for me) but I did have a good friend leave town the day before my symptoms set in
-I had covid in feb after being tripled vaxxed and did not feel ill at all before symptoms started
-My symptoms ebb and flow- I can usually wake up and feel fine, the pressure starts ~4 hours after waking and gets better/worse throughout the day
-My glasses, hat, things on my head feel tighter– inflammation?
– I do not have “vertigo” only the boat/floaty sensation
I am hopeful this goes away, I am on day 6 and in this short time has really impacted my day to day.
If I have VN, this is apparently caused by a virus- I intend to do things to boost my immune system— stress reduction, supplements, celery juice.
Hope this helps someone.
Wanted to update my status— After my ER visit, my symptoms slowly began to subside. I took the decongestants and anti inflammatory in addition to a number of immune boosting supplements. I also used LED light therapy on the side of my face, attempted to de-stress. The intense pressure I was feeling on my left temple began to lessen until eventually I no longer felt it there, but a achy pain in my left jaw. I still had a sense of disequilibrium and slight general head pressure. The pain/ache in my jaw/left side of face persisted. I had a fullness in my ears and every once in a while, my left face muscles would twitch. During this whole ordeal I read about ALL of the things my symptoms could possible be from and eventually found myself reading about TMJ. Based on how my symptoms were currently presenting, it sounded probable. My left jaw is not aligned and when I open my jaw fully, juts out to the right and it pops sometimes. It had NEVER given me any trouble before so initially I did not think it had anything to do with it. I applied a heating pad to my jaw area yesterday and when I removed it I yawned and my left ear popped loudly and I felt fairly intense pain momentarily. At this point, it’s impossible to say with certainty exactly what happened, but my symptoms have improved greatly. What remains is some general head pressure, very slight disequilibrium and slight left jaw & ear aching.
As I am reading your post, I feel like I am on the same journey and have explored the same possiblities for my symptoms. Shortly after July 4th, I started experiencing dizziness that prompted me to visit my primiary care physician. First, they noticed both my ears were clogged and performed an ear irregation to remove any build up. Unfortunately, that did not help and I returned to the dr a few days later still complaining of dizziness. She recommended I give it a week more before possibly proceeding with an MRI to rule out any serious issues. Fortunately, the dizziness started to subside that following week and I felt pretty much back to normal! My dizziness was never extreme spinning like some have mentioned, but certain environments like the grocery store exaggrebated my dizziness greatly.
A couple weeks later, I have now started to experience headaches that don’t start until midday – I wake up feeling fine, but the headache sets in around the early afternoon. I end up giving in and having to take advil. I am currently wearing invisalign so I also started going down the path that it could be TMJ related! I have a misaligned bite and experience jaw popping/clicking. I reached out to my Ortho, but he was pretty dissmissive that TMJ was to blame due to it being such a hard condition to diagnose. I have noticed my balance is weaker again, so I am not sure if this is just the ebb and flow of VN until symptoms fully resolve.
I am so appreciative of your post and for David Morgan who put this blog out in the open to potentially help other people!
I have commented here before about my VN experience and have also read all of your stories. I can empathize with you. For the most part I continue to function well post VN but on occasion have some recurring symptoms. I recently reached out to Alen Desmond, Doctor of Audiology who specializes in vestibular disorders. Interestingly, he also had VN himself. He shared his experience through his blog and he will be posting a new blog post to address a few of my questions. Many of you may find some of his previous posts on VN helpful as well.
Just thought I’d pass along the info in case it is helpful to someone out there. I’ll also post the new link when the new post is up.
At last I have found an article that seems to put some sense into my ongoing issues. Thank You!!!
In June 2021, while driving I had a sudden visual attack (Not Dissimilar to the the intro to the Austin Powers movies) this was followed by an A&E visit where nothing was found!
For the next week I had spells of dizziness and then on Day 8 a situation whereby I could not walk without falling over. Unable to see bright light, TV or computer screen without Nausea. Motion sickness in a vehicle was probably one of the worst things I have ever encountered in 62 years!!
The anxiety levels associated with this illness were so extreme that I thought I was having a heart attack.
Another trip to A&E and again nothing found except my body had zero reflexes. Subsequently my heart was found to be in AF and medicated.
It is now 15 months and I still have severe issues with light and motion/vibration. Although medicated I still have issues around sleep and concentration. Brain fog has diminished over time but still significant some days.
In consideration of week 1/2 I am now in a better place but still have some significant issues.
Yet again thanks for all contributors to this article – At least we now know we are not alone.
Just to add that all this occurred just two weeks after a second Covid 19 vaccination and I am convinced that this was the trigger point for my VN. albeit no medical diagnosis or support in respect of this claim.
Was diagnosed with VN about 7 days ago, started happening 9 days ago. i cant lay down and feel semi normal but forget sitting up ans walking.. i am so offbalanced, my head pressure is insane and dizzy as hell. i cant walk more than a few feet, and i cant walk outside. Im keeping positive atleast trying but This sucks. Im on steriods 10 day on day 5 ans my doc said i should feel better by now.. very terrified im only 22 im scared
WOW! After reading this story, I thought I wrote it about myself! Bam! just like that, I fell to my knees and could not walk or talk. I was transported to the hospital by ambulance, then about 4 hours later, I could communicate with the hospital staff. I spent three days in the hospital with an MRI and CT scan. Doctors thought I had a seizure or a stroke (I’m 62), but the doctor ruled them out after the results returned. Three days later, I felt much better, but still, everything around me felt off kilt. Like my head was a liquid compass. I was then discharged with no answers. This was the first time I walked after collapsing on my driveway, and now I know why I was constantly being asked if I felt nausea, but I didn’t until now. Non stop vomiting until I lay on my bed without any head movement. I went to Keck Hospital and discovered I had Vestibular Neuritis. It’s been three months, and I’m at about 85% back to normal.
Additional: I had all COVID shots and a buster in the last two years. I also got COVID two weeks before this occurred, and COVID is a virus.
Our clinical experience mirrors that of R Gacek. Many patients with chronic or recurring vestibular neuritis induce remission of symptoms on high-dose valacyclovir; fewer do so on long-term acyclovir, and as the dose drops below 500 mg valacyclovir po TID, the recrudescence rate goes up. In our experience, about 30% of patients relapse within several months after stopping antiviral therapy. Some patients never attain suitable relief of symptoms, and many but not all, have some degree of permanent documented vestibular impairment. Psychological factors and motion intolerance are common in this group of patients.
In summary, a growing body of evidence suggests that acute viral vertigo syndrome is viral, that the most likely viruses to do this are herpes family viruses, and that recurrent and chronic vestibular neuritis may benefit from the use of antivirals. There is at least class IV evidence that anti-herpes medication is of value in managing chronic and recurring viral vertigo disorders, quite separate from single-event acute viral vertigo, which typically resolves with supportive care, sometimes more rapidly with short-term steroids. For these reasons, we have been using antivirals for chronic or frequently recurring vestibular neuritis since 2001, with strong clinical reason to believe that for many. Still, for not all patients, this is highly effective.
Vestibular neuritis, inflammation of the balance nerve, is the second or third most common cause of peripheral vestibular vertigo, with benign paroxysmal positioning vertigo thought to be the most common. The purpose of this article is limited to that which appears to be caused by viral injury to the vestibular nerve. Many causes of dizziness, vertigo, rocking, floating, near-black out, fainting, imbalance, foggy-headedness, or motion intolerance exist. Vertigo is a relatively common problem with about a 1-year prevalence estimate of 3-5%.,  By comparison, coronary heart disease has an annual Prevalence of Heart Disease rate of about 4%. Migrainous vertigo has a prevalence of 0.89%, and benign paroxysmal positional vertigo 1.6%. Ménière’s disease and benign positioning vertigo, which many believe may at least of the time be secondary to vestibular neuritis, are briefly mentioned in this article but are not addressed in detail. Vertigo with psychological overlay, called phobic postural vertigo, may also be a sequela of vestibular neuritis. An enormous study from Taiwan used national health diagnosis code data from office visits for vertigo to study the overall prevalence of unspecified vertigo. An overall prevalence rate was 3.1% or about 3.13 per 100 population. Of that number, nearly 38% had had a recurrence at least once. Of those, 48% had 2 recurrences, 14% had three, and 16% had more than three recurrences. It is not likely that all of them had recurrent vestibular neuritis. Still, a ready inference from this study is that if recurrent vestibular neuritis is the 2nd or 3rd most common disorder, it may have a recurrence rate under-estimated by smaller studies. Differentiating vestibular neuritis from other acute brainstem disorders, vestibular migraine, and managing acute, chronic, and recurring vestibular neuritis will be addressed briefly. Vertigo is a common problem, and acute viral vestibular neuritis is a major part of the picture.
Acute initial vestibular neuritis is said to have an annual incidence of 3.5 per 100,000 population accounting for 7% of the patients at outpatient clinics specializing in treating vertigo. The reactivation of a latent herpes simplex virus type 1 (HSV-1) infection is thought to be a likely cause (but this author has found that at least 10-15% of vestibular neuritis patients have negative HSV 1 and HSV 2 IgG titers). Vestibular neuritis is a diagnosis of exclusion. Vestibular neuritis is also described as acute viral vertigo, acute vestibular neuronitis, or chronic or recurring viral vestibular neuritis. These terms, however, are not completely synonymous. Each has its own features which do overlap and have the common thread of viral inflammation of the vestibular nerve.
UPDATE: It’s been 6 1/2 months, and still not 100%. The only way to recover now is to let the brain reprogram balance. Doctors say it sometimes causes permanent damage to the nerve. I’ve had no improvement for two months now. This sucks
February 6, 2021 was a Sunday. It was very warm for this time of year. I was seated in the front yard playing hearts on my IPad while our 2 little dogs ran around me chasing each other. I consider myself to be quite healthy. I play racquetball regularly and have a physically demanding job as a mail carrier. Having saved up nearly 13 Months of sick leave really paid off. Out of nowhere came a spinning sensation. I’ve experienced these in the past and they go away in 3 seconds leaving you wondering why they ever happened in the first place. Well this one did end, but immediately afterwards I heard/felt a pop in the center of my brain. The best way to describe it is if you take your thumbnails and hook them on your upper teeth and pull them forward making a “clicking” sound. After this “click” the world was spinning and I went flat. As I mentioned earlier it was quite warm and at this point I was sweating profusely .My wife finally found me and coaxed me into the house where I laid on the floor for the remainder of the day. After improving for the next 2 days I was ready to go back to work, until I woke up that Wednesday morning spinning all over again. Off to the ER where they did all kinds of tests until later in the day a positive Covid-19 result came in. Vertigo was my one and only symptom. It’s been a year and 3 months and after reading some of these stories I feel lucky. Ya, I went from not being able to stand to going back to work in about 4 months time. I even drive ( the scariest if you’ve been there). After the vertigo went away it has never returned however I still have something that is hard to describe . It’s like when you’re coming off a mountain and your ears won’t “pop” ….mixed with jet lag…..mixed with brain fog, and I get exhausted easily.
People need to start waking up and smelling the coffee about COVID. There is no evidence whatsoever this is a naturally occurring virus but tons of circumstantial — strong circumstantial evidence it was an engineered virus. Regardless of a persons political camp, the facts are undeniable that this is an engineered virus. Once we accept that we can better understand why VN is occurring more than ever before according to one doctor I spoke to. When you teach an upper respiratory virus to infect humans and sidestep the immune system — whilst making the virus more virulent — stands to reason the effects will be more severe. I read 30% chance of VN from a common cold, now, on a couple sources. Since all cold viruses are basically a Coronavirus, stands to reason again, that the super virus will eventually “teach” other Coronas how to infect easier and be more sever. Same doctor told me he sees people with much longer lasting cold symptoms than ever before. We need to start holding people accountable for this, stop thrusting our heads in the sand and stand up. Especially since we (taxpayers) are still funding this GOF research to this day.
Agree! When I called Keck Hospital to make the appointment, the receptionist commented that she had never seen so many appointments regarding new VN cases!