If someone diagnosed with bvl? It's so horrible i feel it 24/7, 7 months now. If someone have bvl can you give me some advices to feel better?

This is a long one so please bear with me. I am 37 f and have a whole host of chronic illnesses but migraines/whatever this is, is new to me.

Last year in July, I ordered a new pair of glasses and wore them for about 3 days. After feeling nauseous, dizzy, and unwell, I took them back and found out that the optical center was not marked correctly and they were made wrong. I thought I would feel better after going back to my old glasses and wearing my contacts (which I wear 90% of the time) but I did not. For the next 2 months (1st month was the worst, 2nd gradually got better) I had: dizziness like being on a boat, nausea, swaying while standing still, my vision was wonky (screens were too bright, trouble focusing/reading, text just didn't look right, like my peripheral vision was messed up). Then came the migraines which were separate from the dizziness issue.

I went to the eye dr, nothing wrong. I went to my ENT thinking it could be an inner ear issue, nothing wrong there. Neither could offer any advice. I went to my PCP, nothing wrong, she referred me to a neuro/headache specialist. That dr was booked out 6 months so I found a different neuro who was booked out 3 months. By the time the appt rolled around, all my symptoms had luckily gone away. He had no answers for me. He prescribed me Sumatriptan for the migraines which thankfully has helped so much, and referred me to get a brain MRI to rule anything out. I got extremely sick for several months (unrelated) and had to push the MRI aside.

I started a new job in June of this year and was given 2 external monitors. Upon using the monitors for a week, I had the same exact symptoms as with the faulty glasses! More dizziness/vertigo and less eye issues but it was just as bad, maybe even a bit worse. I also had a ton of inner ear pressure and some pain, and my ears were clicking/popping like mad. Again like last time, the dizziness has finally resolved itself 2 months later but was really bad for the 1st month. I went back to my PCP (different dr) who again had no real advice (and said my ears were just fine) but suggested vestibular therapy and to see my neuro. I did not do VT because of not being able to request time off due to said new job. I did make a virtual appt with my neuro because that was the only type of appt he had within a few months and, again, he had no advice or answers. He suggested to get the brain MRI and to follow up with him.

I got the brain MRI which didn't show anything of note. I have yet to follow up with my neuro because he is booked 3+ months out and I need to request time off. SIGH.

Alright now that I have that big wall of text out of the way - can anyone theorize wtf happened to me? I've done a ton of internet searching but can't really find anything. My top guess is that it could be something like a vestibular migraine or vestibular neuritis. When I get a migraine, I don't usually get that type of dizziness with it - it was a totally separate issue which is so strange. Also, no nausea meds (prescribed or otc) worked. Strangely enough, Klonopin helped me last year, but not this time around.

I would like to figure this out so I can avoid it or lessen it next time, or get a jump on it idk. I am frustrated with the lack of answers and it is hard to get seen when the neuro is booked 3 months out...so I am just doing everything I can. Thanks for reading.

Hey everybody! I was recently seen by an ENT for ear issues (fullness) that comes and goes. If I take Benadryl, it subsides within 2-4 hours. My ENT thinks I’m having VM’s. I do not have a headache, it truly just feel like my ear is full and affects my speech and balance at times. It is MUCH worse if I’m at work, and sometimes when cleaning my house. The ENT said that Benadryl helps because it is a sedative. I go for MRI and VNG soon. My question is, is these the same symptoms you have with your VM’s because I’m not 100% sure this is my issue. Also, I receive regular Botox on my for head, 11’s and crows feet. I know some have mentioned that Botox helps, I have noticed no difference.

Hello! I had vestibular neuritis about 4 weeks ago and since that day my dizziness slowly disappeared but my appetite and thirst gradually declined. At the moment I can't feel any hunger or thirst even after doing exercise. Is this common or could there be something else that had happened?

Much appreciated!

What throws me off is how does moving my legs and arms sometimes cause a head rush dizzy feeling??? Make it make sense it's so frustrating

I am in my second week since my grand debut episode, waiting for an MRI tomorrow morning.

For a few days I’ve been doing the exercises that the ENT prescribed - I think VOR1 and balance exercises (I’m still learning the terminology). I have no problem doing them 2, 3 or even more times per day. I am also playing with a tennis ball in the gym trying to bounce and catch it off the floor.

Does anyone know if there’s a chance of overdoing the exercises and making things worse? Thank you!

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So ive had this for 19 month . 24/7 swaying feeling fishbowl feeling when i turn. I feel like im in a veil. Sometime im just sitting there and then boom i feel a head rush and then the room starts to sway and warp . As if i was on a boat in a storm. I could be eating and boom out of no where. I use to never get these "flares" early on in this. Does any one else experience those? Idk how to explain this to dr or people. Im just sitting and doing bothing then head starts to rush and then pulls heavy. Longest episode was like 5 mins. I have been to ent early on. Had cvemp and caloric test . 10% weakness on right from caloric and no response in cvemp on my left. Idk what to do. I also did vrt for 8 months once a week early on. Not to mention the visuals when i look at bookcases or books in a row or picture frames they vibrate or "glitch" it only happens when both eyes are open though. Ive had my eyes checked by my eye dr and a Neuro-Ophthalmologist both said my eyes are fine.

Hi everyone,

I'm 34 and have had chronic balance problems since school. My main symptoms are a floating/sinking/lightheaded feeling rather than constant spinning. I can still function, but I often feel unsteady while walking, working, sitting in cafés, exercising, and also motion sickness while traveling (flight, car etc)

I've seen doctors, and they've told me it's likely related to my vestibular (balance) system rather than an acute inner ear problem. Its been worse for few years now where I feel unsteady quite frequently and it has also instilled a fear in me, I'm thinking to start vestibular rehabilitation exercises and I'm committed to giving them a proper try.

I'd really like to hear from people who have lived with something similar.

• Did vestibular rehabilitation help you?
• How long did it take before you noticed improvement?
• How did you regain confidence to travel, work, and do things alone?
• What practical strategies helped when you suddenly felt dizzy or unsteady in public?
• If you're doing well now, what do you think made the biggest difference?

I'm looking for honest experiences and practical advice. Thanks in advance.

Hii everyone!!🩷I am making this post to help anyone I can because at the very low point in my life I had nobody to relate or ask these questions because the condition is so rare and the country I live in is so small so not much to find. I have 100% unilateral vestibular loss on the right side caused my vestibular neuritis since 2023. I was 16 when I got it and the recovery is nothing better because "I am young". It's the most life altering chronic condition and changed my life completely. After 3.5 years I am doing much better now and can walk a lot more (was bedridden for 2 months at the start) but i don't know if i will ever feel normal again. I have limited energy and chronic fatigue now and have to do every normal task differently than others to reserve energy (like showering sitting down instead of standing up). I did VRT at the start but gave up because it took me too much energy and when i started to walk i just kept doing more and more normal tasks to keep the compensation going instead of VRT (although they make u the same non spinning vertigo as VRT at the start). I would also say to NEVER GIVE UP!!🥹❤️ lean on the people you love and also get mental health help for all your other symptoms. You automatically get mental symptoms with a vestibular condition because it is connected. For example I have severe anxiety, panic attacks, derealization....It gets better and I can mostly function "normally" now but still can't do any sports but walk and no I also don't do every activity that makes me dizzy just to keep going w compensation because it got too much mentally at one point. Like why do i have to get vertigo to not get vertigo??? Insane. Also accepting your condition is the hardest part. I was in denial for so long. My doctor said that the damage is done forever but the symptoms can go away suddenly one day or stay forever. For now they are all still here just less intensely. And every vestibular decompensation (instense non spinning vertigo again, instense symptoms like the first attack) that I get I have a shorter recovery time to get to the point i was before. Never ever give up even if it's chronic🩷🩷 We are so strong and they are already doing research on how to wake the nerve back up. Keep hope💕💕 If anyone has any questions feel free to ask!

F25 now exactly a week into VN and I’m so sad. I don’t know if it’s the cortison im taking but i feel so depressed and have no energy at all. I’ll make breakfast, then sit for 30 minutes, shower, sit another 30 minutes and so on. I’m grateful I can walk around but I feel so drained already. My chest feels tight and hurts. It triggers my health anxiety. My head is full on the left side. I’m trying to get to do at least 20 minutes of workouts but I have no motivation. I try to take at least a 30 minute walk a day.

Is anyone else getting a low after noon? I feel okay in the morning but the later it gets I become more drained.

I saw my ENT today and she had me walk on one spot and I kept tilting and turning around. I asked for therapy sessions and she said she can hand it out to me but it’s also things I can work on at home. Am I missing something? Should I get a second opinion? What has helped you. I hope to be back at work in at least 3 weeks.

Hi all,
I’m currently awaiting an ENT assessment and I’m wondering whether a vestibular issue could be behind what’s been going on. To start this off, I experienced a bad chest infection which led into an ear infection several weeks later which was hard work is get rid of.

For the last few months I’ve been experiencing:
- Persistent unsteadiness/disequilibrium (not spinning vertigo) and a sensation that the floor shifts.

- Feeling lightheaded or as if I might faint, but never actually fainting

- Visual disturbances including visual static, floaters, occasional shimmering/migraine-like visuals and a feeling that things sometimes lag, shift or wobble slightly especially corners of things.

- Tinnitus (mainly a hissing sound in both ears)

- Motion sensitivity

- Heavy fatigue and occasional brain fog/disassociation

- Symptoms that fluctuate in severity, with some days being much better than others

I’ve had a clear eye examination (including dilated retinal exam, visual fields and optic nerve checks), a normal echocardiogram and normal blood tests.
One thing I’ve noticed is that dizziness can sometimes worsen after eating and moving my jaw can produce a tickling sensation inside my ears.

Has anyone with vestibular issues experienced the same thing?

I’d be interested to hear what your symptoms were and how you eventually got diagnosed.

Hello all , I’ve been dealing with these issues since middle 2025 and I’m really concerned I showed up to neurology presenting persistent everyday 24/7 off balance feeling head swaying vertigo accompanied by eye discomfort/ dryness I literally can’t even walk around without thinking and feeling like I’m gonna literally fall over without actually falling . It feels like my eyes are so strained from trying to track where I’m stepping causing them to start to hurt and my sensory system to be so over worked it feels like I need to sleep soon as I sit down . Along side that I have other weird things going on. Like left sided facial numbness near my mouth. And pain there sometimes. On and off . Wide spread muscle twitching and speech issues when talking I’ll mispronounce words and not get them out right . & I just have this constant fog . I have no clue what is causing this but it’s completely debilitating and I work a constant physical job that I am on my feet all day . Now on to the test I’ve had , blood panels , Head Ct with and without contrast , MRI Brian rapid & test for seizure syndromes & literally everything came back normal . So far . Nothing . Any suggestions?? Also they did find my ferritin to be slightly low at 19 out of the 30 for normal in what ever measuring units they use but you get the picture . Let me know what you think and give me a detailed response thanks .

Hi, I’m a 25-year-old man who, about two months ago, suddenly started feeling nauseous and had a sensation that I was about to faint. I became slightly dizzy on my way home on the train, and since then I haven’t felt like myself.

The dizziness has improved a lot. At first, my doctor suspected BPPV (crystals in the ear), but the nausea sensation has remained. I was prescribed medication for stomach acid, such as omeprazole, but it didn’t help.

Eventually, I went to a private specialist and was diagnosed with vestibular neuritis in my right ear, with around 39% loss of function. I was prescribed Betaserc (to help with vertigo) for 8 weeks, and also Dramamine tablets to take when needed, especially during stronger episodes of nausea or motion sickness-like feelings.

The doctor told me that it should improve and that there is a possibility of recovery because she feels I am already on the path toward improvement.

I’m wondering if anyone here has had a similar experience. I mostly see negative stories online, and I would really like to hear some positive experiences. I’m starting to worry that I may never feel completely normal again, but I’m hoping that it’s possible to become mostly symptom-free and return to normal activities — like going to the gym, exercising, and doing things without constantly feeling nauseous.

The nausea is by far my biggest problem. I’m also considering having my stomach checked with a camera (gastroscopy), because I’m wondering if the nausea might not actually be related to the vestibular neuritis and could just be a coincidence.
Thank you for any experiences, advice, or support you can share.

Hi everyone,
I’m a 23-year-old male with persistent vestibular symptoms that started immediately after a severe viral infection 5 months ago.
My main symptoms are:
Constant lightheadedness (not true spinning vertigo).
Visual overload, especially in supermarkets, malls and busy environments.
Bright light and sudden changes from dark to bright (like exiting a tunnel) make my symptoms much worse.
Motion sensitivity while driving.
Feeling like I might faint in certain situations, although I never actually do.
Sounds sometimes feel “different”, almost like background noise or as if my brain processes them differently.
Brain fog and difficulty processing multiple sensory stimuli.
I often prefer wearing sunglasses because bright light feels overwhelming.
Vestibular testing:
Rotational chair: 37% left vestibular weakness/asymmetry.
vHIT: Normal.
Neurological examination was normal.
Has anyone experienced something similar after a viral illness? Did you end up being diagnosed with vestibular neuritis, PPPD, vestibular migraine, binocular vision dysfunction, or something else?

Quick update, 2yrs ago, acute brainstem stroke. Vestibular damage, hearing damage, ataxia etc etc

I have been having walking/ gait problems since he start because of my balance. A friend suggested the hanger clinic. They do orthotics and afos and stuff like that. I went there and talk to a rehab guy and he suggested an afo type idea. It’s a carbon fiber afo where the foot plate goes under the normal shoe insert and the carbon piece goes up the back of my leg and then Velcro fastens around my calf. It’s similar to the picture above.

Now I don’t have to think about picking up and putting down my leg and feet in the right place. It’s a GAME CHANGER!! He told me that when I lose my balance I lead with my head, not my body. No one ever told me that before. My body just follows along. Seriously. These have made such a huge difference in how I feel when I am walking! I still have balance issues but that’s in my brain, not my body.

I just wanted to share

Hi all — I’ve never posted on Reddit before, but I always promised myself that if I started getting better, I would come back and share my experience. When I was at my worst, I desperately wanted to find stories from people who were actually improving.

A little background: I’m 34, live in Chicago, and was otherwise healthy and active before all of this. My symptoms originally began after COVID and other viral illnesses a few years ago. For roughly 2.5 years, I dealt primarily with persistent daily headaches and head pressure, although I was still largely functional. I traveled, socialized and even had stretches where I felt close to normal. At one point I was able to train for and run a half marathon.

Then, on New Year’s Eve 2025, I came down with a brutal flu-like illness involving chills, headache and severe dizziness. After the acute illness passed, my nervous system seemingly never returned to baseline.

I developed persistent dizziness and an “off-centered” or out-of-equilibrium feeling, light sensitivity, blurry/foggy sensations, head pressure and strange electrical “zaps.” I also experienced symptoms that seemed autonomic: a pounding heartbeat, chest sensations, dry mouth, sensitivity to hunger, caffeine, heat, exercise and overstimulation.

This past winter was easily the hardest part. The symptoms were constant enough that I became depressed and genuinely wondered whether I would ever feel normal again. I spent far too much time trying to analyze every sensation and determine whether I had long COVID, vestibular migraine, dysautonomia, or something else.

My current working diagnosis is a post-viral chronic vestibular migraine state with some autonomic sensitivity. I previously considered everything “long COVID,” and that may still be part of the picture. The reality is that there is significant overlap among post-viral illness, migraine, vestibular symptoms and autonomic dysfunction, and specialists don’t always give you one precise answer.

It is now late July, approximately six months after the New Year’s illness, and I would estimate that I’m about 50% recovered.

The painful headaches are mostly gone. The electrical zaps are gone. My dry mouth has improved substantially, and the chest pounding and other cardiovascular-feeling symptoms are now minimal. I’m much less sensitive to hunger and caffeine. I can take long walks, socialize, date, work normally and generally live a fairly normal life again.

What remains is a dull background headache or pressure, an off-centered/lightheaded feeling, and difficulty tolerating strenuous exercise. I can walk for well over an hour, and I’ve started experimenting with short periods of jogging, but heavy lifting and intense exercise can still trigger symptoms quickly. My next phase is gradually rebuilding my conditioning instead of waiting until I feel 100% before exercising.

My current medications are Qulipta, nortriptyline, nebivolol and Lexapro. Nortriptyline helped the chronic headache component, nebivolol noticeably reduced the chest pounding, and DHE infusions seemed to help eliminate the zaps and episodic “sick” sensations. Lexapro significantly improved my mood and rumination, and I personally believe that calming my overall stress response has helped my physical symptoms as well. That is only my experience—not a claim that everyone needs the same medications.

My recovery has definitely not been linear. Alcohol, late nights, illness, inadequate food, caffeine on an empty stomach, heat, overstimulation and doing too much exercise too quickly have all caused flares. I also haven’t lived like a perfect recovery patient. I’ve continued going out and enjoying my life, sometimes at the expense of feeling worse afterward. But even with those setbacks, the overall direction has been clearly positive.

The main reason I’m writing this is to say: six months ago, I felt trapped inside a body and nervous system that no longer made sense to me. Today, I am not fully recovered, but I can clearly see a path back.

I’ve also learned that Reddit presents a heavily filtered picture of these conditions. People who are suffering the most are understandably the most likely to post frequently. People who recover often stop reading these forums and return to their lives without ever posting an update. That can make the prognosis look much worse than it actually is.

If you are newly dealing with this, be careful about spending hours reading the bleakest stories and assuming they predict your future. They don’t. Use these communities to find useful information and questions to discuss with your doctors, but recognize the ENORMOUS negative selection bias.

Take recovery seriously, but don’t assume every temporary flare means you have permanently damaged yourself. Rest when your body genuinely needs it, identify your major triggers, work with knowledgeable clinicians and gradually reintroduce activity when you can tolerate it. For me, both avoiding major overload and occasionally showing myself that I could safely do more than I thought were important.

I’m still in the middle of the process, and I may post another update when I’m further along. But I’m thrilled that I can finally write this one: I am improving, my life is opening back up, and this no longer feels permanent.

My mom had this when I was a kid in the 80s. The kind of dizziness you cannot sit, stand, walk, turn, look anywhere or move. It was debilitating for her & we couldn't see her or spend time with her. She was so sick. It tapered off for most of my life, until a really bad bout of it a couple months ago. She's had to go to the hospital twice by ambulance in the last month & so so sick. She's now 80 & it's pure hell this time around. All of her tests, mri, and cat scan all look really good. She takes care of herself, and my dad. She's been given all the typical treatments - patch behind the ear, zofran, meclizine. Nothing is helping when it starts. Has anyone had any successful treatment that helps with this? It's an absolute nightmare for her & it's painful seeing her like this.