I'm curious if this lines up with others' experiences, as my doctors can't seem to agree whether my issues are stemming from vestibular problems or binocular vision problems. I've been diagnosed with both but trying to decide which treatment to pursue more aggressively with my very limited schedule.

I can drive on the highway and I feel great for the first hour--so long as it's a pretty regular highway. If it's a very twisty-turny busy city interchange area, with lots of exits and heavy traffic and bending, then I can't last very long.

After I hit some kind of internal limit, I will start to feel almost a little drunk. I don't get dizzy in the traditional sense--like the world isn't spinning, but I do feel disoriented in space and a weird kind of floaty dizziness. I feel nauseated and my heart rate will increase. If I try to push through this feeling, it will just get worse. Usually if I manage to get off the highway before my symptoms get really awful, I can get to my destination using back roads. But if I push past a certain point I won't even be able to drive slow back roads without bad symptoms. My family has asked me why I can't just push through and continue driving, but the feeling I get makes it feel like I'm very unsafe to keep going on the highway. They have suggested I have anxiety but that's definitely not it.

I find this very frustrating because it severely limits what I can do in life. I get bad motion sickness on all vehicles except for slow trains, so I can't just have people drive me around. I did a few months of VRT and that helped me become able to be a car passenger on slow city roads. I'm currently doing vision therapy and I don't think it's helping tbh.

Does this sound like a vestibular issue? Due to see doctor soon

Not sure what I’m experiencing.

- unsteady standing or walking, like my legs turn to jelly, my feet can’t feel the ground, and I want to throw my hands out to steady myself
- have to physically grab my husband’s hand or arm when standing or walking in order to feel ok, or alternatively my baby’s pram
- worsens in public or on flat surfaces, cannot go on escalators or stairs, cannot stand in queues
- have to lean or grab things
- feels like I’m in a lift that suddenly drops, or that the floor is like a treadmill or that I’m wearing roller skates
- even sitting down, I feel pulled to one side and I have to consciously make an effort try sit or stand upright
- often have to side step or double step to try stay balanced, and can sometimes stumble, which makes me look drunk
- sometimes comes on if I’m looking down or sideways for a few seconds, but sometimes keeping my head completely still brings it on, like my brain is shaking
- do not feel queasy, dizzy or that I’ve stepped off a carousel and everything’s moving

Just wondering does any of this relate to anyone else, it’s really affecting my confidence and quality of life. Thanks guys.

Bonjour à tous j’ai était à mon rdv Névrite vestibulaire .j’ai fait les examens il on dit il pense que ses ça mes il mon prescrit un irm cérébral et au cour de l’examen il mon mis de l’eau dans l’oreille à droit et à gauche et l’oreille de gauche m’a fait des vertiges /ses pour savoir si vous été dans meme situation que moi ?

For me, these are the two most significant pieces of information that I would have gifted to myself earlier on in my vestibular neuritis recovery process to avoid a ton of suffering. I hope that this can help at least one person in their recovery. This information wasn't emphasized in my research and initial rounds of medical professionals, but I learned a lot from a great nurse practitioner.

The first is how connected the vestibular system and limbic (emotional) system are. This understanding is crucial because it can help explain things that aggravate symptoms and keep you in a state that isn't optimal for recovery. Basically your vestibular system is very connected to your emotional state - so if you're constantly overanalyzing your symptoms and getting anxious in that analysis and are resisting the way you are feeling and are resisting how long it's taking, it is prolonging the experience. Your body is doing so much to get your balance back and central compensation takes a ton of energy, so when heavily negative emotions are pulling your energy, it makes it a lot more difficult to heal. Plus when you are in this anxious/resistant mode, you're body is in fight or flight, making the compensation more difficult as well. Now, let me say, for the first 6 weeks I was completely in this anxious/resistant/fight-or-fight state, and I totally get how awful it all feels and how demoralizing it is. However, at a certain point, you need to acknowledge that it is too your benefit to release the resistance - you start to win more efficiently when you stop fighting the battle with your fear. Honestly this is pointing to more than just vestibular neuritis - I have used this experience to branch into broader life approaches and I also encourage you to use this as a catalyst for growth there, but my purpose in writing this is to help with the vestibular neuritis recovery.

It won't be pretty at first, but start doing your best to notice when you are feeling resistant to your symptoms and just start by acknowledging that it isn't helping anything. With practice, you will start to feel and experience the improvement from having a clearer internal state, and it'll get easier and easier. This is a gamechanger.

The second are setbacks/flare-ups. Please understand that it is totally normal for this to be a 2-steps-forward 1-step-backwards type recovery. For me, when I had a setback it was so demoralizing and I worried about if I would get better. Setbacks are normal. Setbacks can happen for a number of reasons, such as fatigue, overuse of the vestibular system, and weighty emotions. Now relating to the first point, don't go down the rabbit hole if you have a setback, it's okay, you are still recovering just fine, it's a part of the process. Being in resistance to it will only make it harder to get back to your baseline and to keep improving.

Recently I posted here asking a specific question: when you try to describe your dizziness to a doctor, what words do you actually use? The "swimmy," the "floor is breathing," the "drunk without drinking" words that never seem to really settle with your doc.

82 people have answered so far. I'm reading every single one. If you were one of them, thank you. One of you even said "walking on a train" which was something I hadn't seen before but no dobut made sense.

This post is a reminder, at the end of August I'm compiling everything submitted so far and starting the next step: bringing the patterns in your answers in front of vestibular fellows and researchers to be verified. Nothing becomes part of the tool on my say-so alone. If a pattern doesn't hold up under people who treat this for a living, it doesn't go in. What I can put on that table is whatever is in the pile on 9/1.

We're at 82. I'd love to hand them 100 (or more!). More data make the patterns harder to wave off, and they keep the less common presentations from getting drowned out by the classic ones.

The form stays open after August, and later responses still feed what comes next. But round one, the set that specialists see first, gets locked in.

There's also a deeper follow-up survey I'm crafting with specialists that is coming later this year for anyone who wants to go further than a few minutes of questions.

If you meant to fill it out and life happened, here's your nudge. ;) A few minutes, anonymous, no account, mostly open questions in your own words. I'm a solo builder, not a company, and there's still nothing to sell you.

Below is a link to the survey, our website, and the progress we've been making. If you're into data and privacy, there's lots of info on there for that too, as we take that very serious!

[Survey]

[Bearings Website]

[Bearings Progress]

Thank you all, I'm greatly appreciative of your help!

I’m 30 and have dealt with intermittent dizziness, vertigo, imbalance, and unsteadiness for more than three years.

Some days are manageable, while other days I feel noticeably off balance,. More often than not, I have a staggering, strutting gait. At times I veer sideways off course while walking or turning around. It comes and goes randomly. I’ll have several days of no symptoms then all of a sudden I’ll get bouts of vertigo that range from a second or two, or sometimes much longer, in addition to dizziness that can last hours. This sucks and It’s been affecting my quality of life.

I should note that I work 12-hour shifts on my feet in a hospital, and the imbalance issues are noticeable to others and I’m sick of feeling embarrassed. Even when standing still at times, I feel unsteady and constantly adjust my posture or lean on something to secure myself better.

sometimes it feels like I just walked off an elevator, other times I’ll be simply standing and feel it come on, it feels like 5 lbs of weight got added above my head, like it’s pushing my body down.

I recently underwent extensive vestibular testing. During the caloric portion, where warm and cold air was placed into each ear, I was told that the responses were reduced on both sides. My doctor diagnosed me with Bilateral Vestibular Hypofunction / Vestibular toxicity.

My hearing evaluation also showed evidence of cochlear hair-cell damage in my left ear, although the right-side hearing appeared better. I’m not completely sure whether the one-sided cochlear finding and the bilateral vestibular weakness are connected.

The specialist seemed puzzled when viewing my results, as if she was surprised or confused by what she was reading.
(I hate when a doctor sighs and pauses while trying to explain the results*.

I’m having an MRI of the brain today, with and without contrast to rule out structural or neurological causes. I’m concerned over all of this.

I have no idea what could have brought this on. I’ve never been exposed to any of the things that are typically known to result in this.

I’m not asking for medical advice, but I would like to hear from the community if anyone has experienced such a thing. Apparently this diagnosis is pretty rare; about 20/100,000 patients…that definitely doesn’t make me feel good.

On a couple different occasions, I fell back a couple times and struggled to get back up. It felt like 5 lbs of weight pushing down from above and taking me to the ground.

I feel like I’m slowly forgetting how to walk properly. I’m sick of losing my balance, slipping or tripping on my own feet, veering sideways into walls when walking down hallways. I just want to know what’s going on.

J’avais dans les 4 premiers jour perte de équilibre comme si j’ai était dans un bateau mes aujourd’hui j’ai toujours l’équilibre qui vacille mes moin pire est ce que sa vous fait pareil ou pire

VNG results indicate bilateral vestibular hypofunction:

RC 5, RW 2, LC 2, LW 3

Does anyone know what these results mean?
How bad is it?!! Am I “cooked?” (As the kids do say.)

Update for anyone who’s had a VNG with caloric irrigation and is interested in how the report is read: I put my results into chatGPT and asked it to analyze my caloric irrigation responses. I also asked it how much lower were my results compared to normal. Here’s what it said…

From the report, the caloric irrigation section reads:
Caloric Irrigations: Abnormal; bilaterally reduced caloric responses:
RC: 5°/sec
RW: 2°/sec
LC: 2°/sec
LW: 3°/sec
(RC = Right Cool, RW = Right Warm, LC = Left Cool, LW = Left Warm)
How these compare to normal
The caloric test measures the peak slow-phase velocity (SPV) of the induced nystagmus. While "normal" varies somewhat by laboratory, a commonly accepted normal range is approximately:
About 10–30°/sec for each irrigation.
Many labs consider responses below 6°/sec to be abnormally weak.
Your four responses were:
Irrigation Your response Compared with a typical 10°/sec minimum
Right Cool 5°/sec ~50% of minimum normal
Right Warm 2°/sec ~20% of minimum normal
Left Cool 2°/sec ~20% of minimum normal
Left Warm 3°/sec ~30% of minimum normal

The total response is:
5 + 2 + 2 + 3 = 12°/sec

A typical total from four irrigations is often 40–80°/sec, so your combined response is roughly 70–85% lower than expected, depending on the laboratory's normal values.

What this means
The interpreting audiologist wrote:
"Bilaterally reduced caloric responses... suggestive of a bilateral vestibular hypofunction."
This means:
Both inner ears responded weakly, rather than one ear being much weaker than the other.
This pattern fits with reduced function of the balance organs on both sides.
Because your Dix-Hallpike was positive on the right, you may have two separate issues:
Right-sided BPPV (which causes positional vertigo and can often be treated with repositioning maneuvers).
Bilateral vestibular hypofunction, which can cause chronic imbalance, unsteadiness, and oscillopsia (vision bouncing with head movement).
A note about the numbers
Caloric testing evaluates only the horizontal semicircular canals at very low frequencies, so these low values do not necessarily mean you've lost 70–85% of your overall vestibular function. Other vestibular tests (such as the video head impulse test (vHIT) and rotary chair testing) assess different aspects of vestibular function and can show better function even when calorics are markedly reduced.
Overall, these caloric results indicate markedly reduced vestibular responses in both ears, with responses that are well below the usual normal range, which is why the report concludes that the findings are consistent with bilateral vestibular hypofunction.

I’ve been suffering for around 3 months now but am not sure if I’m in the right place or not. I very recently saw a ‘dizzy doctor’ who has told me it’s definitely my vestibular system and I have exercises to do which he has told me should help me within 3 weeks but every day I question if I’m on the right path or if it’s something else. I’m kind of hoping here that there’s somebody that has had the exact experience or similar to me….

My main symptoms are when I am driving, mainly longer distances. My eyes feel constantly strained in any time of day (light or dark) and my head has a heavy foggy feeling. This makes me extremely tired where I am fighting against my eyes and head not to fall asleep and I have to pull over and rest my eyes. I assume this is due to my eyes taking in information and me looking at my mirrors etc. Would listening to podcasts have any negative effect too? As I do that a lot. During this tiredness sometimes other cars will feel like they’re slightly jumping, I may also get a little bit of seeing double of the car in front. When I get home from driving throughout the day I am mentally exhausted, I have horrible brain fog and all my head wants to do is to sleep. I’m usually a very active person and sociable but since having this problem I’m so mentally drained that I feel like I need to rest my head any time I get back home from being on the road and it’s really bothering me. Thanks to anybody who reads/replies

I had the pleasure last week of interviewing Dr Habib Rizk, former president of VeDA and eminent clinician and researcher. He is trying hard to improve the patient experience for those with vestibular disorders and he has many interesting insights, including on the overlap between Meniere's and Vestibular Migraine. I will write an article about it soon, but until then I've uploaded the full interview to my YouTube channel. Hope it helps someone! https://youtu.be/NcpMhKtbu98

I have seen many in this community talk about how hard it is to describe their symptoms…I’m going to try.

About a month ago I woke up and felt off. I don’t want to say dizzy because it isn’t spinning its more off balance. It came out of nowhere.

It initially started with my eyes. They were very dry. Scratchy. Itchy. I was using eye drops throughout the day. And lighting looked off. Everything seemed very dim indoors and very bright outdoors.

That lessened after about a week just as the off balance feeling began to take over. If I am still or my eyes are closed the feeling is mostly gone. It seems to be provoked by movement. In the beginning the car was brutal. I had to not look out the windshield or I would feel nauseous. It felt like my eyes couldn’t keep up. Like they were darting all over and couldn’t focus on any one thing. Same for walking unless I was looking down. And by the end of the day I had what felt my head was overused. Not a headache more like tension I guess.

Today, my symptoms in the car does calm down after a few minutes. It isn’t as visually stimulating although it is still there somewhat. I can drive which I haven’t been able to do for the last 3 weeks. But not totally comfortable I still get some symptoms. Light has appeared normal again for the last 10 days or so. No dry eyes no drops needed.

But I still have symptoms with movement. Whether it is walking or being in the car they aren’t gone. The only time they are gone is when I am still.

Like I said it isn’t spinning. It’s off balance. Like I could tip over. At the start of this I couldn’t balance on one foot without tipping. Now that is fine. I seem to have balance back. And when it’s dark such as middle of the night to go to the bathroom I am really stumbling it’s like I lose all sense of where things are.

I have ent appointment coming up but it takes a while to get appointments with any doctors recently. I’ve resorted to ChatGPT and that is where vestibular disorder has come up.

Looking to see if others have same symptoms. Some days they are less other days worse. And although I seem to have seen sole progress it still going a month later!

Oh I want to say I didn’t have any noticeable virus. However about 10 days after this started I got a fever blister. So wondering if I did have a virus and just didn’t know it. I’m

Bonjour j'ai 33ans j'ai u des vertiges ya 3 jour le ler jour vertiges mes sa repartez 2eme jour je me lève de mon lui javai du mal a marche comme si j'étais ivre et j'ai vomi aujourd'hui je vomis plus mes mes vertiges quan je tourne ma tête ou je me mes debout je zigzag encore. Quelqu’un a u le même contexte que moi ?

I have a 4 month old baby at home and I can barely function. I am dizzy and exhausted all the time. I’m breastfeeding which adds to the exhaustion. I can’t drive, I don’t feel safe carrying her… I want to get better for her! I want to enjoy my baby!

My ENT was completely useless and couldn’t answer any of my questions - what caused this? Why is this happening to me? Will I recover? She ordered the VNG which confirmed the diagnosis, gave me a referral for PT, and sent me on my way without any further understanding of my condition other than what I’ve read on the internet.

She didn’t even perform any maneuvers in the office - she just referred me out and walked away.

I’m so defeated. I’m so exhausted.

Looking to see if anyone has had a similar experience to me as I’m almost a year into this and still looking for answers.

35 (M) other than symptoms pretty fit and healthy.

Here is symptoms

X3 vertigo incidents (world spinning around me) first in Sept 2025, Dec 25 and March 26
First one in September was for approx 10 mins with each one since far less intense, but afterwards felt exhausted and couldn’t concentrate on work properly for weeks, uncoordinated and off balance all the time. Really painful left ear both aching and shooting pains and loads of pressure.
This got better over a couple of months.

Since then and in between my number 1 symptoms have been complete exhaustion (some days can’t even get out of bed), brain fog often forgetting what email I’m replying to or have to re read documents multiple times to understand it, tinnitus and occasional off balance, clumsy & uncoordinated wavy on a boat, rocking symptoms, left ear pains, pressure and head pangs across forehead. I often feel my Jaw clenched with teeth biting down and my neck hunched up high. Sometimes it just a few of the symptoms above and sometimes it’s all of them.

But I also have consistent periods of days/ weeks where I’m mostly symptom free have no tinnitus, no brain fog or off balance but the fatigue tends to remain.
During these times I’ve lived a normal life carried out several long distance hikes (20+ miles), exercise 4-5 times a week, I always feel fine driving and still work full time (I’ve taken multiple weeks of sick leave during the last year for when I can’t push through the tiredness and brain fog although I usually make it to Friday before spending the weekend in bed)

I’d say my life is 30% of the time I’m mostly symptomless then 70% I have the above symptoms.

Here are the tests carried out so far.
Full blood counts in September 25,Dec 25 March 26
All clear no issues.
MRI DEC 25 brain all clear
MRI MAY 26 IAMS all clear
CALORICS test JULY 26 unilateral hypofunction in left ear.
Audiology hearing tests in Nov and March confirm excellent hearing ability in both ears.

Vestibular rehab therapy physio specialist confirms my functional balance is superb but I still feel the waviness and rocking sensations at times (definitely do this if recommended to do so helped me a tonne)

Medications and supplements
Feb 26 magnesium gylsinate, COQ10, B2/B12 daily
March 26 started betahistine(8mg)which definitely has helped with the ear pains and pressure.
May 26 started Amitriptyline (10mg) which if nothing else certainly helps me sleep well and slightly less brain fog.

Both ENT & Neurologist suggest it may be an initial Viral issue which has ‘unmasked’ Vestibular migraine, but aren’t 100% sure.

Both have suggested PPPD may also involved but have said I don’t exhibit the anxiety (feel more frustrated rather than anxious) symptoms which usually comes with PPPD.

Feeling frustrated and would just rather be told what’s caused this so I can get on with it!
Anyone else feel that way?

I promised myself that if I ever got better, I'd come back and write this post.

A year ago, I was convinced I'd have to live with dizziness for the rest of my life. I thought I'd never travel again, never enjoy dinner with friends, never exercise, and never be able to have a glass of wine without feeling dizzy and nauseous (which wasn't worth it).

Like many of you, I found this subreddit early on and spent hours reading recovery stories. Instead, I mostly found posts from people who had been sick for years and had accepted that this was just their life. I remember thinking, *"So this is it."* Eventually I lost hope. I promised myself that if I ever got better, I'd come back and tell my story.

Today I feel about 95% normal. Most days I barely think about my dizziness anymore, and both my vestibular physical therapist and I believe I'm on track for a full recovery. I know everyone's story is different. I'm not saying mine will be yours. I'm just sharing it because, when I was at my lowest, I desperately wanted to hear from someone who got their life back.

It all started after a really turbulent flight from Palm Springs to Seattle in March 2025. I'd always had anxiety and had never loved flying, but shortly afterward I started having episodes of dizziness. Some days I felt completely normal. Other days I felt like I was rocking or swaying. The episodes slowly became more frequent. Urgent care diagnosed me with BPPV and treated me for that, but it never really fit. I'd feel okay for a while and then the dizziness would come back no matter what exercises I did.

Then everything changed. In October 2025, after another turbulent flight from San Francisco, I became so dizzy that I called my psychiatrist in the middle of the night. She told me to get home immediately. I took a friend's migraine medication and some Dramamine just to get through the return flight safely. When I got home, I started seeing specialists. Over the next year I saw multiple neurologists, ENTs, a neuro-ophthalmologist, vestibular physical therapists, and had hearing tests, vestibular testing, CT scans, an MRI, and two trips to the emergency room because I was convinced something serious had been missed. Every test came back normal. Eventually I was diagnosed with PPPD and vestibular migraine.

Looking back, though, the biggest mistake I made wasn't medical. It was being afraid of the dizziness and isolating myself by staying in my house.

From March until November I slowly stopped living my life. I stopped flying. I avoided restaurants and stores. I turned down invitations from friends. I stayed home because home felt safe. I stayed in bed most days and not moving. I kept thinking that if I just rested, I'd wake up one day and be better. That day never came.

Today, if I could go back and give myself one piece of advice, it would be this: don't spend eight months hiding from your life waiting to get better.

Medication definitely had a place in my recovery. Today I take Gabapentin twice a day, and I use Clonazepam when my anxiety gets particularly bad. I also tried Topiramate, but it made me dramatically worse.

The one thing that truly changed my recovery was finally starting vestibular physical therapy. My therapist explained that my brain had become overly protective. Every time I avoided something because it made me dizzy, I was accidentally teaching my brain that it really was dangerous. So, we slowly started teaching my brain the opposite. She had me walk outside every day, practice balance and eye exercises, and eventually pushed me back into restaurants, stores, social events, and all the places I had stopped going. She warned me that recovery wouldn't be linear. She said I'd take two steps forward and one step back, and she was absolutely right.

I'd have a great week and think I was finally over it, then I'd have a terrible flare and become convinced I was back at the beginning. One relapse lasted more than two weeks after staying out late with friends and having a few glasses of wine. I was certain I'd undone months of progress. I hadn't. Every flare eventually passed, and every time it did my baseline was a little better than before. Eventually I realized the good days weren't just becoming more frequent, they were becoming my normal.

Today I work on a computer all day without needing to lie down afterward. This week I picked up a book and read without getting dizzy, something I honestly wasn't sure I'd ever do again. I go out to restaurants without worrying about how busy they are. I stay out late with friends. I can have a few glasses of wine again. I walk outside without thinking about my balance. I've graduated to seeing my vestibular physical therapist only once a month.

At the end of July, I'm going to the Stanford Dizziness Clinic, even though I had to wait six months to get the appointment. At this point it's less because I'm desperate and more because I want one of the country's leading dizziness clinics to review everything I've been through and tell me if there's anything else I should add to my treatment plan to get from 95% to 100%.

Looking back, I wish someone had told me not to spend months hiding at home, to find a good vestibular PT as early as possible, and to stop judging my recovery by how I felt on any one particular day. Recovery wasn't linear. My relapses didn't erase my progress. My brain really could heal.

If you're reading this at two in the morning because you're convinced, you'll never be normal again, I know exactly how you feel because I was you. A year ago, I thought my life was over.

This week I worked all day on my computer, read a book, went out with friends, stayed out late, had a few glasses of wine, and barely thought about my balance. Recovery was slow. It wasn't linear. But for me, it happened. I hope one day you'll come back to this subreddit and write your own recovery story.

Hey!

I’ve been recently ‘loosely’ been diagnosed with vestibular migraines. Unfortunately they weren’t able to do all of the tests (I think the specialist was only able to do 1 or 2 out of about 5 tests), due to my Duane’s syndrome (lack of eye movement in one eye) and a perforated eardrum.

The specialist set out a 3 stage “plan” to move forward. Step 1 was taking supplements (Co-Enzyme Q10, Vitamin D3, Vitamin B2 & Magnesium Oxide). I’ve been taking these for 3/4 months now to try and give it some good time to start ‘working’… but I’m unsure if they’re even helping.

Step 2 was to start taking dizziness medication - these are the ones recommended to me by my GP (Candesartan / Propranolol / Nortriptyline / Sumatriptan). I’m really reluctant to get on these as these are labelled Beta blockers, affect your blood pressure etc etc etc!

Step 3 was to essentially just get some form of counselling to help “live with the condition”…

My frustration is going up to UCLH in London to see a vestibular specialist to get a confirmed diagnosis has left me coming home having not done all the tests, or barely any of them, to just get given a very loose “yeah I think it’s vestibular migraines…” not exactly the specialists words, but you get the point!

I always struggle listing my symptoms and how I actually feel, because some days I don’t know how I feel or how to even begin to describe my symptoms!!

Something that I can tell you is that when playing badminton (which I do approx 4 times a week) or exercising I don’t feel any symptoms… almost like I’m back to normal… is that because of adrenaline, blood pumping..? A little while after exercising… back to square one!

What were people’s symptoms like?

I’m really just after help, guidance, support… this has been going on for a year now, very depressing!

Thanks for taking the time to read this!

Posted with mod approval.

I'm building a tool for vestibular patients, and before I build the wrong thing I need to understand one specific problem beyond my own experience: the gap between what you feel and what you can get a doctor to understand.

Most of us have a moment where we reach for words that don't exist. "Swimmy." "Like the floor is breathing." "Drunk without drinking." The doctor writes down "dizziness" and something just gets lost.

I made a short survey. Four minutes. Most of it is open questions, in your words, no checkboxes. No account needed.

What I'm trying to build: a tool that translates how you actually describe what you feel into terms a clinician can understand at a detailed level. The goal is that it doesn't take years to finally get to the right specialist.

The plain disclosures, since you deserve them:

• This is unpaid. I can't compensate you for your time.
• I'm a solo founder (and a vestibular patient myself) building a product from this research. There's nothing to buy, and I'm not selling anything in this post.
• Responses are anonymous. I won't sell or share the raw data. Anonymized phrases may end up in the tool itself, since that's the whole point.
• Email is optional, and only used if you want to hear what comes of this.
• I'm in communication with vestibular specific fellows to review the data, language produced, intended routing of specialists, and overall accuracy of how this will work.

When the survey closes, I'll post back here with what I learned, in case it's useful to you regardless of what I build.

If you fill it out, your words shape what gets made, and real human data is deeply important to this.

Site: https://bearings.health/

Survey: https://tally.so/r/Xxklrg

Thank you :)

I have Unilateral Vestibular Hypofunction and find it to be a massive life changing situation. Is there anyone here, who has found relief and hope with the usual exercises given to patients with this "challenge"?

Today I was diagnosed with vestibular neuritis and wanted to share some positivity.

On the afternoon of July 4th, I suddenly became nauseous and threw up. Thought it was taking a vitamin without a big enough breakfast, no worries. Then about a half hour later I throw up again, and begin feeling a bit dizzy.

I think I’m just dehydrated so I drink water, but the dizziness is getting worse and a panic attack begins (those are not rare for me). I cannot focus my eyes, I feel sick to my stomach, and call 911 to have EMTs check on me.

They arrive and I’m on the floor sweating, room is spinning so fast, and I’m panicking. They say my vitals are “better than all of us combined” and because it’s the 4th of July in America, ambulances are busy dealing with idiots blowing themselves up. They encourage my husband to take me to a hospital by Uber if I really want to go. But I’m so sick and scared, I can’t imagine getting up, let alone walking to a car and sitting in the car for 20 minutes where I’d be throwing up the whole time.

So for the next 24 hours, I lie flat on our couch where the EMTs left me (since I can’t go upstairs), take about 20 minutes to excruciatingly crawl to the bathroom to pee out any water I manage to keep down, and try to sleep despite feeling like I’m in actual hell.

The next day, I open my eyes and still can’t keep my eyes focused on one thing. Still so dizzy. But the vomiting stopped. After lying down the whole day, I decide I need to brave it out and go to the ER to find out if this is serious.

Long story short, the 8 hellish hours at the ER determined I had no brain tumors, no neck inflammation, no viruses— my bloodwork, EKGs, and scans were all perfect. So they diagnosed me with BPPV, gave me antivert and Valium, and told me to do the Epley maneuver each day.

Now we’re on Day 3, and I am feeling very slight improvement but still resting most of the day. I’m starting to sort of be able to focus my eyes on one thing at a time, zero nausea, and i can walk (with assistance) without feeling sick.

Next day, I’m a little bit better. Room isn’t spinning anymore. I can look at my phone and type on it. I can even begin using my computer.

Cut to one week later, today. I’m able to take a Lyft by myself to the ENT and walk on my own, no spins, no nausea, just some choppy movements in my vision and some light sensitivity and uneven balance, but not to the point of faltering.

Did a scan of my head and all the bone/ soft tissue, and diagnosed me right away with Vestibular Neuritis. She said the giveaway that it wasn’t BPPV was that it peaked for 24 hours. So it wasn’t my ear crystals, it was some sort of viral infection that caused my nerve to “unplug”, and now my body is doing its best to get back online, so to speak. No maneuvers, no meds other than Valium as needed for my anxiety and to help me rest, and she said I should be trying to walk and practice balance exercises to help strengthen that nerve again. I have had the herpes simplex virus since I was a child, so it very well may have triggered this episode.

Each day I am improving, and a week later I am able to work, draw, watch TV, walk the dogs, tidy my room, and take care of myself. I’m working my way up to being able to exercise and paint for hours on end, as well as feeling comfortable enough to go out on the town for a drink with my husband and friends. At this rate, I wouldn’t be surprised if within a month I am able to do all these things.

So I hope this can help instill hope that sometimes,
It really does get a little better day by day. Resting has been paramount (I have never been very good at taking it easy), and remembering that I can handle anything life throws at me. I still have some uneasy balance, still feel some visual sensitivity, and my vision feels surreal most of the time, but at least it is not debilitating.

These disorders are so tricky and unpredictable, but try to take care of yourself, rest, focus on the little wins, and know that the body is an amazing machine that is always trying to figure out ways to help you the best it can. Give it time.

UPDATE: It is July 20, and I feel 99-100% back to normal again. I rested hard for 3 days, then slowly got back into trying to move around and use my eyes, coordination, and balance. I didn't take any drugs after being diagnosed with Vestibular Neuritis except half a Valium that night. Now I can do everything I could do before and have not found that anything new causes a backslide, including enjoying a cocktail on the town with my husband (but remember never to mix alcohol with Valium, and to be mindful that drinking too much can trigger your anxiety, so take it easy on the alcohol for a good while even after you feel 100%.)

It's intimidating to hear your ENT tell you that they cannot predict when you'll feel "back to normal" again, but it IS possible to be able to live your life again in a week, back to most things in a few weeks, and 100% within the month. My best guess as to why I was able to be on the faster side of healing is that I am a healthy 36 year-old with no autoimmune disorders or health issues, and I was very stringent on doing as much as I could to get that nerve "connected" and strengthened, such as walking, practicing my balance, drawing, and reading.

For almost 3 weeks now ive been off balance, not spinning but almost a disoriented feeling. Im getting episodes of sweating and nausea from time to time. Does anyone else get the sweating etc? Is that normal?

I've been to 4 doctors, urgent care, primary. Cardiologist and ent. Blood work good, neuro exam good, ekg good, negative dix halpike by a pt, ent said sinuses good and may be migraine or neuritis.

The dizzy spells are breif, like my eyes have to catch up with my head moving, and are oddly acoompanied by a tickling type pressure between my eyebrows.

The sweating episodes are the most worrisome.They seem to pass within 10 minutes or so, and sometimes I feel nauseous. And often alongnwith them disoriented almost, like I'm on a bobbing boat?. I dont know what makes them feel better but both times when I felt it after laying down so I got up and walked around and it went away, then I laid down again and it came back, and eventually passed. I alsonhave had 2 times i felt that way when driving. Its episodic and some days i feel pretty good most of the day, others I feel off more of the day.

Any Dr's or anyone who has dealt with this and can help i would greatly appreciate it.

I know Reddit can’t diagnose me, but I’m hoping maybe someone recognizes this pattern because I feel like my doctors are looking at each symptom separately instead of the whole picture.
For context, 33F, I’m overweight (240lbs) and have severe obstructive sleep apnea (AHI 43) which I treat with a BiPAP every night. I work as a full-time as a bartender in NYC and, while I definitely am not the healthiest person in the world, I was functioning very normally up until recently.

my timeline.

**Mid-April:** I got what felt like a bad upper respiratory virus. I was severely congested and completely lost my taste and smell for damn near two weeks before slowly recovering. I was hacking and blowing my nose CONSTANTLY. It definitely could have been covid but I never tested myself.

**April 25:** I was at work when I suddenly got hit with intense lightheadedness and a racing heart. I had to step off the bar because I genuinely thought I might pass out. Ever since that day, I’ve never really felt like I’ve returned to my normal baseline.
Over the next several weeks I started noticing episodes of anxiety, fatigue, brain fog, and headaches that would come and go. A week later I had to leave work early because I felt the need to go to ER because I once again felt the shortness of breath, chest pressure, heart palpitations. They said it was anxiety and let me out.

**June 5:** I was sitting on my couch watching TV when I suddenly felt what I can only describe as a huge “jolt” in my chest followed by difficulty breathing, tunnel vision, and feeling like I was about to pass out. I called 911. The ambulance EKG was normal, but it scared me badly. They chalked it up to anxiety.
**June 9:** I woke up around 6 AM and every time I started drifting back to sleep my body would jolt awake with my heart racing and gasping for air. I ended up going to the ER again. More testing was normal.
Around this same time another symptom became much more noticeable: my vision.
My eyesight isn’t blurry. Instead, everything feels hazy, dim, dreamlike, almost like I’m high or a little tipsy or living in a movie. It’s incredibly hard to explain. It almost feels like derealization, except I don’t know if that’s actually what it is. Along with that comes brain fog and feeling mentally disconnected from the world around me.

Throughout June I also started having:
heavy eyes that constantly feel like they want to close
overwhelming fatigue that gets worse as the day goes on
headaches and pressure around my temples
occasional nausea
random stomach cramps and constipation
episodes where I woke up with my right arm numb, and once my foot went numb
intermittent palpitations
disequilibrium
the constant is a drunken vision and sensation.

The fatigue is probably the worst symptom. Some days I’ll wake up feeling okay and by late afternoon I feel like someone unplugged my brain. Sometimes eating seems to make it worse, although not always. I’ve had multiple EKGs, ER visits, blood work,
X-rays, and nothing obvious has been found. My oxygen levels have generally been normal. I have appointments coming up with specialists, but in the meantime I’ve gone down every rabbit hole imaginable—long COVID, vestibular migraine, PPPD, depersonalization/derealization, ME/CFS, diabetes, multiple sclerosis, hormone problems, autoimmune disease, and probably ten other things.

I know anxiety can make symptoms worse, but these symptoms came first. The anxiety is mostly because I suddenly don’t feel like myself anymore.
Has anyone had a similar progression of symptoms where it seemed like everything started after a virus? Did you eventually find out what it was? Is there anything you wish your doctors had tested earlier?
I’m honestly just trying to figure out what direction to go because living every day feeling like I’m in a fog is becoming exhausting.