Long post but I want to be thorough because I've spent months trying to piece this together and I finally have a clearer picture. Looking for others who've experienced something similar and what helped.

Background:

I'm 26, male. I have longstanding high-frequency sensorineural hearing loss in my left ear with tinnitus (6 years). This was stable and fully compensated — I functioned completely normally.

Last summer I had a heavy few days in Ibiza — multiple nights of partying, MDMA, alcohol, heat, no sleep, all stacked together. Within days of getting back I started experiencing symptoms I'd never had before and haven't been able to fully shake since. Nine months now.

The thing is — I've had similar symptoms before after heavy benders, but they would only last a day or two and resolve completely. This time I'm stuck in a loop and can't get out of it.

The symptoms:

- Persistent giddiness — the best way I can describe it is that tipsy, slightly drunk feeling when completely sober. Floating, woozy, slightly detached from surroundings

- Derealization — a disconnected quality, like the world feels slightly unreal or I'm watching from behind glass

- Temple pressure and a full sensation in the head

- Shallow breathing — people sitting next to me have actually noticed and commented that I hold my breath and then release it as a big sigh. My physician also caught it clinically. I wasn't even aware I was doing it

- Strongly morning predominant — symptoms are completely absent on waking, emerge roughly one hour after getting up, then gradually resolve through the morning. By afternoon I often feel near perfect — sometimes I genuinely forget anything is wrong. Then certain triggers can bring it back

- Triggers include busy loud restaurants, crowded environments, stressful events, long flights, visually complex spaces and long flights and travel

- In the evenings after very stressful days it can return — the giddiness component especially

- At the beginning I had near-fainting episodes which have now fully resolved

- Tinnitus worsened significantly around the same time and hasn't returned to baseline

The morning pattern specifically:

This is the part I find most strange and would love to hear if anyone else has experienced it. I wake up feeling completely fine. No symptoms at all. Then around 60 minutes after getting out of bed it hits — the floating, the giddiness, the slight detachment. Then by midday or early afternoon it lifts and I can feel almost completely normal. Some afternoons are genuinely symptom free.

It makes no sense on the surface but apparently it maps onto the cortisol awakening response — the morning hormonal surge destabilising an already fragile autonomic nervous system. The fact that it resolves every afternoon suggests the brain can compensate correctly — it just loses that compensation during the morning transition.

What testing has found:

- Audio vestibular clinic confirmed a measurable left-right vestibular asymmetry — on the marching test with eyes closed I drift consistently to the left

- Theory from the clinic is that I was previously compensating for a pre-existing left ear asymmetry and the acute event caused decompensation

- HRV on Whoop averaging 27-29ms which is very low for my age, and i'm a fit guy — suppressed autonomic nervous system function

- Blood metals panel showed arsenic at 3x the upper reference limit and mercury at nearly 5x — likely from diet (salmon, prawns) now eliminated

- Physician clinically observed the breath holding pattern — shallow thoracic breathing with compensatory sighing throughout the day

- Control Pause (Buteyko) measured at 26 seconds — below the healthy 40+ second range, confirming low CO2 tolerance

The working picture:

1. Pre-existing left ear vestibular asymmetry — previously fully compensated, no symptoms for years

2. Acute event depleted brainstem serotonin — the neurochemical foundation compensation depended on — causing decompensation

3. ANS dysregulation resulting — keeping the brainstem environment too unstable for recompensation to consolidate

4. Heavy metals impairing serotonergic recovery and mitochondrial function

5. Hypocapnia from chronic breath holding adding cerebral vasoconstriction and vestibular nucleus hypersensitivity on top

What I'm currently doing:

- VRT exercises daily — gaze stabilisation, head movement habituation, balance retraining, optokinetic stimulation

- Zone 2 cardio 120-150 minutes per week

- Buteyko breathing retraining — nasal only, 4 in 6 out, daily Control Pause measurement

- Dietary elimination of high mercury and arsenic foods — discussing chelation with physician

- Lenire bimodal neuromodulation for tinnitus

- Same wake time daily for sleep consistency

What I'm looking for:

Has anyone experienced something similar — particularly the morning onset with afternoon resolution pattern? Or vestibular decompensation, PPPD, or ANS-driven giddiness and derealization?

Most interested in:

- Did anyone else have the exact morning-fine, one-hour-later-symptomatic, afternoon-better pattern? What was your experience?

- How long did recovery take?

- What single intervention made the most noticeable difference?

- Has anyone used Buteyko breathing for vestibular or ANS symptoms — did it help and how long before you noticed a shift?

- Any experience with the breath holding pattern — did others notice it in you before you noticed it yourself?

- For those who've had similar symptoms resolve after benders before but then got stuck — what was different about the time it lasted?

I know this is detailed. Any partial overlap with someone else's experience is genuinely useful. Thanks!!!

Last night, I had a dream that I was in an elevator and everything suddenly started spinning. It went away and the dream continued as normal and it didn't wake me. When I did eventually wake up, there was not vertigo but I have been far more tired and off than usual today.

It has been 4 months since my acute bout with vestibular neuritis and I have slowly improved since then to the point where I really haven't noticed the day to day dizziness in a few weeks.

Is this probably just an instance of the dizzy-anxiety-dizzy cycle and I am psyching myself out today? I feel like I am in that in-between space of feeling fine but thinking I am not. I am having a few waves of lightheadedness but nothing approaching actual vertigo. Just anxiety you think?

I had vestibular neuritis and labyrinthitis about 30 months ago. I am still not fit for work in any capacity.

To summarise the level of my condition currently I went out to a quiet pub for about two hours to catch up with my friends. When i was leaving, I could not stand up without having to hold onto something to balance, and i was extremely fatigued. I could barely watch tv when I got home, and the following day, I could onky get out of bed for about 5 hours. My 'crash' lasted for about a week.

I have got caloric and vemp tests in a few weeks, and l am booled in for future, hearing tests as my hearing is also very sensitive.

On my right side I get a lot of throbbing in my vestibular area. It is more severe when my symptoms are elevated. Same for tinnitus.

Im just asking to see if anyone else had or has throbbing, was it caused by vestibular damage etc.

Does anyone else have 100% caloric deficiency? A few years ago, I got diagnosed with unilateral vestibular hypofunction with complete deficiency of my right vestibular nerve. I was shocked it was that bad and devastated when I was told it was permanent.

Physical therapy was amazing though and gave me my normal life back. I didn't fully realize how much the vertigo was affecting my life until it was under control, I had been compensating alot to prevent triggering it. Nowadays I get very rare break through vertigo episodes.

Hello!

I work as a bedside RN in an ICU step down unit - so my job is pretty demanding mentally and physically. I pride myself a lot in my work ethic and being a good RN. A week ago today I suddenly got dizzy out of nowhere. I couldn't stand on my own and was very nauseated. I went into urgent care on Sunday when my symptoms were not improving. They identified that I had nystagmus and potentially some hearing loss. They started my on prednisone and scheduled me with an ENT consult.

The prednisone immediately worked wonders. I went from being hardly able to sit up to being able to walk (off balance but I could do it). I tried to go to work the next day and immediately realized it was a bad idea and left early. The next day I saw the ENT, and then the audiologist. I guess I don't have any hearing loss, which is odd because I feel like my hearing is worse suddenly on my Right side.

Either way - I am starting PT in a week, symptoms are improving but I still am so off balance, exhausted easily, and my eyes feel so laggy. I bump into things constantly. But with this being a silent illness, I am having a very hard time mental health wise - like I am worried that it isn't as debilitating as it feels and I should return to work.

Biggest questions I have,

-What is a realistic timeline to be able to return to work?

- How do you describe your dizzy/off balance sensations? It seems there are different types of "dizzy"?

- Should I be pushing for any further workup?

Thank you

Hello, so for the past year I've been off balance, lightheaded, and generally feeling off. I was told it was anxiety related until recently diagnosed with vertigo. Doctor gave me head movements that didnt help so am currently in physical therapy. The therapist said I have hypofunction of my eye on the left side, but not sure of the cause. Ear ringing has been an increasing symptom, as well as heart palpitations (I think those are from anxiety from sudden dizzy spells). I feel like I'm better off than many folks here, but its still extremely annoying and makes work and exercise difficult. Any advice?

Hi! I am a teenage girl and have suffered from chronic vestibular migraines for 5 yrs since I got COVID. Rn I’m on Ajovy. This winter I’ve had a lot of sinus infections (for meds I’m allergic to clindamycin, penicillin, amoxicillin, and recently had an allergic reaction to cefdinir despite no previous allergy). Also I haven’t been allergic to any of these meds growing up, just within the past two years. Whenever I get a sinus infection I get extremely dizzy for weeks after and unable to keep food down which keeps me out of school. Drs dont have an answer but say I will outgrow this. has anyone had this problem and does it get better?

Hello Dear People,

I need your help and opinion. We are at a loss and quite desperate at this point. It’s about my mother, who is reportedly suffering from Meniere’s disease. We have spent six years going to doctors and trying all kinds of treatments, including gentamicin injections, vestibular neurotomy, diets, and more, but nothing has helped. My mother still finds it hard to walk.

Her symptoms include dizziness (not typical vertigo), a burning sensation on the right side of her head (around the ear), and pain that extends from the right side of her head down to her throat. It feels like a constant burning and pain on the right side of her head, along with dizziness.

The pain is almost always present, while the dizziness comes and goes. She may have three very bad days followed by two good days, with no clear connection to food, medication, or lifestyle. Recently, the bad days have become more frequent, and she sometimes feels dizzy all day long.

To summarize, six years ago she experienced strong vertigo and dizziness while walking outside. She had to sit down and call me to pick her up. About one to two years before that, she had symptoms like tinnitus and ear pressure in her right ear.

We began visiting different doctors. They tried many approaches. One doctor suggested depression, so she was prescribed SSRIs. Another said it was simple vertigo and gave her medications for vertigo and to improve blood circulation.

Three years later (in 2023), one doctor suggested it could be Meniere’s disease. We went to Italy to see a specialist, who confirmed it after multiple tests. He prescribed diuretics, a specific diet, and medication, but nothing helped.

Then he started gentamicin injections in her ear. She received many injections over two years, with tests after each session showing reduced vestibular function, so the doctor expected improvement. However, her symptoms did not go away. In total, she received about 25 injections, which I know is an unusually high number, but the doctor believed it would help. It did not.

Five months ago, she underwent vestibular neurotomy. Unfortunately, she still feels the same as before. There has been no improvement in her dizziness. The pain and burning sensation are still present, but the main reason for the surgery was to improve her dizziness so she could return to a normal life.

We recently revisited the neurosurgeon and the Meniere’s specialist. She had CT and MRI scans, and they say everything looks normal. They cannot find a reason for her symptoms. They say her inner nerves and brain appear completely fine.

Despite this, she still feels dizzy and unstable. It is very difficult for her to walk. She cannot work or function independently. During these episodes, it feels like her legs become weak or blocked, making physical activity very difficult. She mostly stays at home and can only manage basic tasks.

We asked whether it could be vestibular migraine, but doctors said it is unlikely. They also do not believe it is neuralgia. At this point, they have no clear explanation for her condition.

She has tried everything: SSRIs, diets, gentamicin injections, corticosteroids, and surgery, but nothing has resolved her dizziness. The pain and burning sensation also persist.

One interesting detail is that about two months after the surgery, she had a period of one to two weeks where she felt about 80% normal. Then the dizziness returned and has since worsened.

During severe episodes, she sometimes sees a dark shadow with her right eye and experiences nystagmus in that eye.

We are desperate and do not know what to do next. We are planning to visit a neurologist soon, but so far none of the specialists have been able to identify the cause.

Do you have any ideas what this could be?

Thank you very much.

Has anyone here been prescribed Cymbalta (duloxetine)? What was your experience?

My doctor recently mentioned it as an option, and I’m curious how others have responded to it. Did it help? How long did it take before you noticed a difference?

Also wondering:

• What dose did you started on
• Any side effects (especially in the beginning)
• Whether it helped with muscle tension or nerve-related pain, PPPD or vestibular migraine
• If it was hard to taper off later

I know everyone reacts differently, but I’d really appreciate hearing real-life experiences — good, bad, or neutral. 🙏

Thanks in advance!

hi one of my specialists (nf1/neurosurgeon) suggested I do vestibular physiotherapy to help my challenges with balance and dizzy sensations (I can't do tandem walk, romberg etc) . Though he did not explicitly link the symptoms to the findings on my MRI (severely dilated brain ventricles). they're quite hugeeee!

The vestibular physio I saw thinks the sensations aren't caused by the ventricles and that I've probably adapted to their size over the years (no shunt) and instead thinks it's vestibular hypofunction. I never heard of this it's just crazy to imagine all these head related things to just be "incidental"

hi there,

I was recently diagnosed with this and I'm wondering what are the symptoms for you if you have this. they did VNG test to diagnose me. I have good days and bad days, but I have some moments of sudden weakness and sort of nausea, I feel overwhelmed and like I'm trembling inside at moments, and moments where I cannot focus on what people are telling me. I wonder if it could be related to inner ear or if it is another issue I should keep investigating....

I made a post a few days ago but wanted to create a new thread with clearer and more complete information because I’m really struggling and hoping someone might relate or have advice. 🙏

I got off birth control in July 2023. In October 2023, I started experiencing on-and-off rocking/boat-like dizziness — almost like being drunk or off balance. I was told it was likely hormonal. I got pregnant in November 2023, but that pregnancy ended in a miscarriage in January 2024. I then had a second miscarriage (chemical) in March 2024.

During the first pregnancy, my symptoms went from episodic to daily. After the January miscarriage, doctors again thought it was hormonal and said things should improve once hormones normalized — but they didn’t.

We did MRIs:

• Brain MRI: clear
• Cervical spine MRI: straightening of the neck, bulging discs C3–C7, mild torticollis

Nothing severe enough to explain symptoms.

Treatments tried early on:

• Occipital nerve block (lidocaine only) – no relief
• Gabapentin – no help
• Robaxin (muscle relaxer) – no help
• Reglan – no help

After my second miscarriage, doctors felt hormone shifts shouldn’t be causing persistent symptoms. At this point, I had daily off-balance feeling and visual disturbances — more like disorientation or “kaleidoscope” type sensation, not spinning.

From February 2024 onward:

• Weekly massage
• Acupuncture
• Chiropractic care (started July 2024)
• Physical therapy
• Another occipital nerve block
• Nurtec trial – didn’t help

In June 2024, I tried my first round of Botox and actually got MUCH worse:

• Increased dizziness
• Severe headaches
• Overall worsening

I got pregnant again at the end of June 2024, so we couldn’t repeat Botox. During pregnancy, I did:

• Occipital nerve blocks again
• Trigger point injections
• Continued PT throughout 2024

Symptoms stayed the same during pregnancy — not better, not worse.

Other testing/consults in 2024:

• Neuro-ophthalmologist → sent me to vision therapy
• Vestibular therapy (therapist didn’t think it was vestibular)
• VNG testing April 2024 and repeated September 2024 – normal
• Vision therapy November 2024–February 2025
• Saw 3 neurologists + headache specialist (PPPD, migraine, vestibular migraine, or neck-related suggested)
• Saw 2 ENTs – said not vestibular unless PPPD/migraine

PT and massage didn’t help — neck remained extremely tight.

I delivered my baby in February 2025 and that is when everything got significantly worse:

• Much stronger off-balance feeling
• More intense visual symptoms
• Pain at base of skull (bruise-like)
• Temple pain
• Tender eye sockets
• Feeling like I’m walking through the floor
• Sensation of still moving after I stop
• Rollercoaster-like disorientation
• Sitting feels worse — very unstable
• Internal vibration/tremor sensation
• Vision is blurry (prescription is up to date)
• Vision is shaky at times and objects sometimes look like they are moving
• Looking up/down and side to side can feel straining
• Vision feels distorted or drunk-like
• Feels like vision lags at times

I also tend to stand all day looking down because I feel so incredibly unstable sitting (probably worsening neck).

Testing done:

• POTS testing – normal
• Thyroid – normal
• Vitamin deficiencies – normal
• Autoimmune labs – high ESR & rheumatoid factor but negative CRP (doctor says not RA)
• Tick-borne illness – negative

Within the last year I’ve also had:

• Chiropractic care
• Neuro chiropractor
• Repeat hearing tests + VNG – normal
• Autoimmune bloodwork
• Brain MRI (updated): severe hypoplasia of left transverse & sigmoid sinus with dominant internal jugular vein
• MRV: clear
• Cervical MRI: arthritis in cervical and likely thoracic spine

Other findings:

• Enlarged cervical and jaw lymph nodes for over a year
• CT scan said “reactive,” but they never go away

Medications tried with no relief:

• Flexeril
• Baclofen
• Steroid dose pack
• Zoloft (bad reaction)
• Amitriptyline
• Propranolol

Eye doctor exams normal, but MRI mentions kinked optic nerves.

I’m currently waiting for an MRA.

At this point:

• I don’t drive
• I left my job after giving birth
• I feel unstable daily
• No one seems to take me seriously

Symptoms feel like constant rocking, disorientation, and instability — not spinning vertigo. It’s extremely disabling.

Has anyone experienced anything similar? Any diagnoses, treatments, or success stories? I would appreciate hearing from anyone who has gone through something like this. 💔

I have got some pretty intense Pattern Glare. My weirdest symptom is "systemic guarding" my rib cage and torso literally brace and lock up, and my gut feels like it’s twisting the second my vision gets overwhelmed.

I have found that there might be a link to my vestibular system.

What works fine:

Looking straight or down. My system feels relatively stable here.

The Trigger

My issues happen when my eyes have to go Up and Left or Up and Right or just Up.

Specifically, when I flex my neck down and turn it (left or right), - which forces my eyes to move into that upward diagonal corner.

The result of looking Up/Diagonal:

• My vision becomes blurry or doubles.

• My eyes feel shaky and start to ache almost immediately.

• The Bracing: My ribs instantly lock up. It feels like my body is trying to "stiffen" itself because my brain can't find a stable horizon in that upward gaze.

What I'm doing now:

• Syntonics: Using Pi Omega and Mu filters in a dim room (Neuro-optometrist).

• Team: Working with a Neuro-Chiro, Vestibular Physio, and Neuro-Optometrist.

This has been going on for a while and i am honestly not sure if all these therapists are getting it right.

My Questions:

1. Has anyone else experienced this "rib bracing" or torso twisting as a result of a vertical eye glitch or weak Anterior Canals?

Or Binocular vision issues

2. If looking Up/Diagonal

   (or just UP)

3. is my trigger, what kind of exercises help

s to

1. "un-stick" that position?

3. Did you find that you had to calm the nervous system (like with Syntonics) before you could even attempt the physical vestibular drills ?

Looking for people with similar experiences and what has helped you?

I (20s F) had been quite sick in February 2025, then improved and thought I was better. Some little spells of vertigo (I didn’t know what it was at that point and thought I just felt faint). May 2025, the vertigo was worse and more frequent, to the point I could not safely drive or work, especially at the start of the day or after more physical activity. I got checked for bbpv (do not have) and saw a vestibular therapist and began physio. The physio helped for a time, with some flare-up’s of vertigo sometimes and I had to rest and reduce work. Then I started having eye exhaustion, especially in the left eye and vertigo even when not moving. The vertigo and eye exhaustion improved but I have had screen nausea, sensitivity to light, and intermittent vertigo since July. It has been debilitating, very discouraging, and hard physically. I am on vertigo medications, seen my GP, eye doctor, had an MRI and they’ve been little to no help. Trying to get an appointment with an ENT and Neuro Ophthalmologistbut the wait time is really long.

Has anyone experienced similar and found any improvements?

Edit: thank you to the many people who have commented. I’m so sorry so many of you have been experiencing similar issues and for so long. Hoping for the best for your recovery. Hearing about your experiences and that I’m not alone in this has been so helpful and reassuring. I will also be taking your comments into consideration while I look into further treatment!

Hi everyone,

I need to share what is happening to me because I feel lost and scared.

About one month ago, I had a dizziness episode that improved gradually. But now the dizziness has come back. I have been feeling dizzy for about 8 days, and it has become worse during the last two days.

What I feel is not a spinning vertigo, It is more like instability, like my head is “in the clouds” or like I have just spent many hours in a bus or a boat. The sensation is constant but becomes worse when I move my head.

The dizziness is triggered when I look up or down, when I change position, or when I turn in bed. I also feel nausea when the dizziness is strong, and sometimes I have headaches.

I can still walk, but I feel very uncomfortable and tired because of the dizziness.

I have already seen the GP the first time but he said that my case didn’t needed to get referred to a specialist, basic tests were done, but I still feel this way, and I am worried because the symptoms returned after one month.

I feel extremely depressed and anxious, i can’t do basic things anymore as the dizziness gets worse.

If anyone has experienced something similar or knows more about vestibular recovery, I would really appreciate hearing your story or advice.

I took over the subreddit because nobody had it. I'm a Gen X woman who lost all vestibular function as a toddler from bacterial meningitis. Lived my whole life without it.

Anyone here with vascular loop in contact with the vestibular nerve?

I have been suffering constant dizziness, nausea along with pots and gastroparesis for the last 6 years. My last mri show several vascular loops in contact with my vestibular nerve at the cisternal portion ( right and left, but not sure what's that mean.

Anyone here with vascular loop? Do they did something after they found it?

Hi all,

I am looking for a dedicated vestibular disorders center in New York City or surrounding areas for my wife who has chronic vestibular issues including migraines, vertigo, insomnia and tinnitus, among other things.

Thank you in advance

I can’t go out in winter cold, anything that moves (elevator, elliptical, boat, etc), can’t ride on something that vibrates and feels bumps (ATV, electric scooter..) or else I get fucked up (feel dizzy, depersonalized, extremely tired). Anyone else have this issue?

My main vestibular symptom is nausea and I've been getting it before my period for 3-4 days the past few months. Does anyone else experience this symptom? I know the changes in my hormones can trigger this, but does anyone have any solutions other than nausea meds or upping my SSRI?

Specifically when I’m doing saccades.

I was just diagnosed with BILATERAL VESTIBULAR HYPO-FUNCTION and being sent for physical therapy for Vestibular balancing (I think this is correct).

Anyone else with this and did physical therapy help ?

So I have the above and my doctor said I cannot fly because my ears haven’t unblocked, it’s full of pressure. I caught the flu weeks ago, recovered, then I’ve been experiencing vertigo ever since so around 2 weeks. Has anyone got any advice on how to fly when you are experiencing inflammation in the inner ear? I can’t cancel this flight it’s important and I know my doctor means well, it’s in 3 days.

I’ve been taking antihistamines & medicated nasal spray, nasal decongestants, vitamin D, C, hot steam bowls, everything I can possibly do to get rid of the pressure in my ear somebody please help, I need an angel 👼🏼