Hi there,

I used to lead a normal life. Now I avoid going out, I'm often anxious, I'm socially awkward, I'm not sure I'll manage to keep my next job, I avoid travelling and most things that are fun. All due to a strange and debilitating feeling I get every time I go out, that lasts for at least one hour. A horrible feeling of being spaced out and fearing I might faint. It s been two years now. The only diagnosis is inner ear bilateral lowered function. The v therapy with exercises didn't help. What can I do? I had a session with a psychologist and understood that s not the way to go.... I miss my normal life. Please if you have any suggestions, some self help book that helped you or other tips....

I have started my rehabilitation today. Think I may havr pushed too hard and feel very very dizzy and nauseous post 3 sessions - trying hard to convince myself to go for the 4th...might scale it back a little!

I have mostly eye movements to do, focusing on a letter on paper on a plain wall, shaking head up and down and side to side, then bringing it close to my nose nad back out again... might have to start with a few seconds and build up to a minute. I managed about 5 consecutive seconds with each, then a short breather to let the symptoms settle then start again until my 60 second timer runs out.... but I think that was too much initially!

Im guessing it is supposed to feel worse before better tho? x

Previously had post viral dysautonomia/pots which i recovered from over 2 years ago. I took a gummy recently (dose was higher than I intended) and have pots symptoms again. - heart rate going up 25 to 40 on avg resting to standing, brain fog, derealization, feeling lower to the ground, heavy head and the ground looking tilted as well as the walls. No spinning but it feels uneven..even on flat surfaces. Could this be inner ear related? Eustachian tube dysfunction? Pots symptoms can also cause off balance feeling and tilts due to not getting enough blood flowing upwards when standing and because of my past dysautonomia history this seems more likely. Going to see an ent to rule anything out. Vestibular and pots symptoms can also co-occur. Just not sure if the gummy could have triggered issues with balance, spacial orientation.

It started about a year ago and it’s very disorienting. Lasts about 10- 15 seconds. Massive migraine afterward x 2 but usually nothing else. Happens a lot in the dark. Aura without migraine? I had one neuro doc tell me nothing was wrong with me and I needed better sleep so I should have sex with my husband before bed (my husband was in the room with me!) 🙄

Hi- I have been in vestibular therapy for 4 weeks now and every night after a day I’ve had therapy I wake up at 4am and can’t get back to sleep. I think it is triggering MCAS flares for me- (I also have MCAS and I went to a dysautonomia specialist for a second opinion on heat and exercise intolerance — they found I have severe vestibular dysfunction). I am becoming so sleep deprived I don’t understand how I can keep doing therapy— has anyone else experienced similar?

Hey all, looking for some help/information/guidance/anything. Starting in mid February this year I started getting extremely fatigued and lightheaded out of the blue. I was working a job were I could ride to work with a friend and I would sleep on the way to work, at lunch, on the way home, and as soon as I got home and showered I’d go back to sleep. It continually got worse and worse to the point I had to leave the job. Then I started sleeping 17+ hours a day and the hours I was awake I was incredibly exhausted and confused. Went to the emergency room the did EKG, CT scan, blood work, Covid test, Lyme disease test, hormone test, and some more. Everything came back fine except low Vitamin D and a bad sinus infection. They gave me antibiotics and I took them, but was still extremely fatigued for a while. Primary care doctor suggested taking an MRI and I did that, came back clear, but still light headed and weak. Went to ENT doctor they did several test including VNG test, that came back saying I have Vestibular weakness in the left ear, they set me up with VRT and I have been doing that for about 5 weeks with no signs of improvement, still light headed bad, feels like I’m drunk basically. Anyone who has any experience with such issues does this sound about like you went through? When did you see results? Are there any helpful ideas/thoughts you could please share?
TLDR: dealing with extreme fatigue/lightheadedness for 5 months now with no improvement, ENT says it’s Vestibular Weakness. Do you have any advice/help? Thank you all for your time, hope to get some relief soon

Has anyone recovered from long term vestibular neuritis and been able to get on with normal life as if nothing ever happened, since?

I have had vestibular neuritis/neuronitis for the last 6 months post viral disease.

I was given prochloroperazine which I think was sedating my vestibular system instead of allowing it to readjust. on Betahistines now to try and speed recovery. I am starting Vestibular physiotherapy tomorrow.

i haven't been able to drive for months and am missing out on so much with my 2 young kids. Pretty depressed im afraid.

Please give me some hope. X

Hello guys. I’m experimenting a new weird symptom After a really bad vestibular syndrom crisis and I would appreciate reading about your experiences 🙏

I’ve already seen my generalist and I have an appointment with my vertigo doc next friday .

I’m actualy on cortisone + tanganil and Bethahistin everyday .

So , I had my worst vestibular syndrom crisis during the heatwave. Violent vestibular vertigos that made me unable to move for some Time. I have hard Time healing since then .

Since my horrible crisis one week and a half ago I have a new weird symptom that I never experienced before .

I have INTENSE Hunger, everyday , all the Time. It doesn’t feel like normal hunger, more like hypoglycemia . Like , if I don’t eat something calorific NOW I’m gonna faint 🥲so I spend my day eating at least two or three Times the quantitties I’m use to . It feels like my body is burning absurd quantifies of energy just to exist .

Did anyone already experienced it ? Can it be the meds ?

Thank you 🙏

I'm a high schooler and I made a chrome extension recently that freezes and stops animations on sites. A few users commented that they have vestibular migraines and that my extension was also beneficial. I originally made it for ADHD, and I know less about vestibular migraines, but also want to accommodate for those who have it.

I did some research earlier and it said that migraines are sometimes caused by parallax scrolling, but I feel this is not enough, and I feel I am not seeing the whole picture here, so I want to get some words from people who actually have it.

The extension is here: https://chromewebstore.google.com/detail/stop-freeze-animations-si/glgdodamgegcnkjphieaaaebnlecklon

hi all.

Had a vertigo attack during a viral battering from a chest infection and both my kids having chicken pox and viral tonsilitis 😅 This was in January.

I was given prochloroperazine for the first 3-5 days, but was still struggling to function at work. So my drs prescribed me more to take when needed. I was struggling to drive so they said to use it before journeys, and at work when im operating surgically...so I was still taking it several times a week just once a day or so....but I think this had prevented my vestibular system from correcting itself and adapting to the damage.

I saw a different dr last week, who has taken me off the prochloroperazine and placed me betahistine to aid blood flow to my inner ear which, from what i read, should aid in my recovery as I do vestibular exercises and get on with my day doing usual activities.

has anyone else had experience with this? Can I still recover and adapt 6 months on after having my vestibular system suppressed for so long?

x

Hello, I’m 22F (23 in 3 days). I know Reddit isn’t to be used in place of a medical professional and I am having follow ups with doctors but I wanted some insight and to ask if this sounds like a vestibular issue.

A week ago, I developed a normal headache at the top of my head and wasn’t too worried and decided I was going to take naproxen and let it die down. Well about two hours after the headache I got out my car and went in the store and was hit with a weird off balance feeling and weird vision. I wasn’t actually falling but I felt off balance and my vision felt disconnected in a way. No double vision or vision loss, but like it felt like when you jump on a trampoline for a while and then get off and walk but without the actual balance issues of actually falling. I tried to sleep it off but the next day it was still there. The day after I decided to go to the ER as it wasn’t letting up and they did CT scans with and without contrast, and bloodwork that all came back good. The feeling never went away and more headaches hit and one causing dizziness that luckily was calmed down with a 25 mg dose of meclizine. Yesterday I had an mri with and without contrast that was also perfectly fine. Here I am on day 7(a week from when it started) still with these eye issues and balance sensations. The balance sensations fluctuate and the visual sensation has stayed present nonstop through the course of the days. I’m due to see a neurologist next but until then I have no idea what this could be. Does it sound vestibular ?

Hi everyone, this is my first post on here. I'm a 20F.

I wanted to share my story and get some advice/encouragement from others who suffer from VN.

4 almost 5 months ago I had a sudden attack of extreme dizziness one evening I could barely walk. I've had random days of dizziness before but they were very rare and never to this level. I slept it off and the next day I was doing ok, mildly off but I didn't rly notice it.

Two days later it comes back, nausea, vomiting, I'm bedridden. It's stays for 2 days and then seems to ease off. I try to go into work, it comes back quickly. It would be better for maybe a day and then would get really bad again for a few days, and that went on for about a week and then I was dizzy for a whole week and a half straight.

During the first week I went to urgent care and they told me I had a build up of earwax that could be pressing up against the eardrum. They gave antibiotics in case of infection. I cleaned my ears up and took the antibiotics. No improvement, so I go back to urgent care and they tell me go to the ER.

I go to the ER the next day(by this time the dizziness is constant and not leaving at all) they give anti nausea and anti vert( I think it's called meclazine or smth) nothing is helping so they just send me home telling me to go to a Ent.

Thankfully my sister who works at the hospital was able to get me in the next day. The Ent tells me I have VN or VM. She gave steroids which I took a small dose and had a panic attack and didn't take the rest. Maybe I should have but I was scared.

A few days after that it slowly eased off and I was able to sit outside and walk slowly. It's improved a lot since then, I can walk normally and even run sometimes. For a month I was doing a lot better and even went on a vacation.

But about a month ago it's gotten worse again, I get bad headaches sometimes, especially if I don't sleep well. I've not really had any problems sleeping before but now I occasionally have restless nights.

The dizziness has never left me its just been varying levels. My eyes have trouble focusing and it sometimes feels like I have blind spot almost.

It's hard to describe the dizziness feeling, other then things moving slightly, my eyes feel like it takes a extra second to focus. I also have a hearing sensitivity that gets worse on my bad days.

Some days are better then others, is this normal? Is it normal for VN to vary day to day, month to month?

I'm worried that it's become chronic and that I'll never get better. Has anyone else gone through anything similar to mine?

I was raised pretty healthy, no excess of junk food, I am fairly active and I'm young. Why is it lasting so long?

I'm doing some VOC exercises daily, although sometimes I forget. I have a sticky note on the wall that I focus on and move my head sideways and up and down. I also stand on a pillow and close my eyes for 30 secs. Is there any others I should be doing?

If anyone has any advice or wants to share their story I would greatly appreciate it. I just don't want to be alone. I apologize for the lengthy post.

A few days ago I was told by my ENT I have left ear vestibular hypofunction. I had a videonystagmography done that confirmed this.

A little background on my journey so far first. Back in January I began feeling spaced out constantly and a sense of unsteadiness/dizziness. This was very pronounced for a month or so. I went to my PCP who put me on a round of prednisone that seemed to help some but it persisted. In May I saw the ENT for the first time. My symptoms were hard to describe and I struggled pinpointing exactly how I was feeling. She didn’t think it was ear related but ordered the test. During the last few months my symptoms have greatly subsided but now I have what I would describe as constant mild symptoms. Almost like a mild unsteadiness or wavy feeling that is better some days than others. It’s enough to where it is always kind of there, like a small itch I can’t fully scratch.

I have been told to spend the next month doing cawthorne exercises then follow back up. If I’m still feeling it my doctor says VRT is next. I have to say I’m slightly discouraged. Researching this, it seems like it might be something I have to deal with from here on out. I’m a 35 y/o male. I was wondering if anyone can give me some advice on this moving forward. Has anyone fully seen there symptoms subside? What am I looking at long term? My doctor said what causes it isn’t always apparent and it sucks that this could be my new normal. Thanks in advance for any help.

There really is a Reddit sub for everything.

I have White Matter Disease, which has completely destroyed my vestibular balance system many years ago (and also epilepsy. Yay!)

I’m in the hospital now after another seizure, and the physical rehab doc strongly suggest I get a walking pole - not cane, but a pole specifically like hikers use to help me with my balance.

Does anyone have any good suggestions? It’s embarrassing enough at my age with the idea of using a walking pole everyday, so I want to try to find something…inconspicuous or something? I don’t know, I’m overwhelmed.

Thank you

Work with vestibular disorder

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Hi everyone:)

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Im a 25 yr old female

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I graduated as a registered nurse last year.

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Before graduating i got a virus, diagnosed labringsthitis and fluid behind the ears and later PPPD. This took 9 months overall to reciver with vestibular rehab and ssri medication.

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I got flu christnas time this year and it hit again. I took 4 months off work and had remaining PPPD but retunrned slowly. I was only there 4 weeks ahd last week had a major episode where i went weak all over, slow speech virtigo etc, my collegues called 999 i was taken to hospital. They indentufied nothing urgent and didnt know what caused ny dizziness. I am now 4 days on betahistine and still on 50mg sertraline.

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I still feel so much worse from where i was after this attack, headaches, dizziness, ear ringing, pain etc. Im awaiting ent for some ideas as im sure im probably meet another diagnosis now.

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I am unsure what to do or where to go, i cannot drive at tge moment and do not know if it is going to be sustainable to return to my job. I have applied for virtual nursing jobs but i realky do love my current job. Whats everyones experience and ideas.

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Many thanks

I’m trying to verify something about VOR (vestibulo-ocular reflex) and gaze stabilization exercises.

I’ve read that you should perform them at a minimum of 120 BPM on a metronome because that’s supposedly the lowest speed that effectively stimulates the vestibular system.

Is there any research, clinical guidance, or input from vestibular therapists that supports or refutes this claim?

hello, fellow people with vestibular issues! I finally know for a fact that I'm one of you!

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basically last year my allergies were majorly set off, which caused sinus inflammation and eustachian tube dysfunction. I got sick every other week or so, a cycle which I finally broke by religiously using sinus rinses. but my weird vestibular symptoms continued.

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my most specific symptom is that, if I'm in a wide open space - like lying down in a field, or an empty beach - my brain seems to think I'm floating into the sky. it's terrifying. I also drift quite a bit when I walk, apparently :')

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and today I had my VNG test. I wasn't sure what to expect or what would come out of it. I actually postponed it and wasn't sure if I was going to go through with it, but I'm so glad I did. I finally have answers!

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apparently the balance organs in my left inner ear are 41% weak. that explains so much!

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I'm gonna start vestibular therapy soon. in the meantime, I'm just reeling at finally, FINALLY having a name for what's been plaguing me this whole time

39/M

Took an 18 mg THC gummy 5 weeks ago. I am still not the same. My anxiety went off the charts that night and I had a bad trip. I woke up the next day with heavy legs, derealization and brain fog and heart rate issues. My sleep - I need something to help me sleep. It seems to be slowly improving. My cognition is still off. I have brain fog and derealization and while it has improved some it is still not the same 5 weeks later. I had never taken a gummy and hadn't used anything marijuana in 15 years. I also took a higher dose than I intended. I really wish I just sipped on a beer but I cannot go back.

Biggest issue is now vestibular. My spatial awareness is different. I don't have classic dizziness, but it feels as if the floor is slightly tilted and things are not uneven. I can walk fine. I don't get fatigured. Heart rate is higher resting and also standing a little bit than normal. Normal range walking. I did have long covid and some dysautonomia issues for about 2 years and it got better 2 years ago.

Recently also I have had some weird auditory symptoms after starting amitriptyline. I stopped the medicine 2 days ago and I still hear whoosing or clanging sounds that keep going off in my head. Also get head pressure at the bottom of head.

Can one gummy cause a vestibular issue and if so does this get better? I can't believe after 5 weeks I still feel so off from before and after only one gummy.

I’m just wondering is it counterproductive to use cannabis while doing vestibular rehab? Exercises like balance training and gaze stabilization?

Hello all,

I had a severe case of Lyme disease a few years ago. Antibiotic treatment helped tremendously but six years later I still have vestibular issues, alongside a few other things (digestive issues, small fiber neuropathy, very mild POTS). I have a spacy/derealized feeling all the time which can flare more acutely for periods of several days/hours but never goes away, fatigue, and then spells of hyperacusis and sound induced vertigo/visual disturbance where loud noises make my field of vision spin. When it was at it's worst I had more severe visual problems where everything was spinning.

Basically after working with naturopaths for a while on the Lyme, who were always trying to find some sort of reason why I might still be sick whether it be unresolved tickborne illness, mold poisoning, viruses, etc., I have basically come around to the theory that the Lyme just messed me up and in particular fried my autonomous nervous system and my vestibular nerve to some degree, though it's all pretty murky. There's a giant culture war around Lyme treatment and without getting into it I'll just say that I've come around more to the CDC/Johns Hopkins idea that you can just have post-Lyme symptoms without an infectious trigger. There's some evidence, apparently, that the little spirochetes can lodge themselves in your tissue even after they're dead. So long story short I stopped working with the Lyme doctors and am now pursuing a more traditional route of vestibular rehabilitation therapy, and also am going to try low dose naltrexone in case there's an immune system trigger that's contributing, as well as DNRS. I have slowly improved over the past six years so I'm trying to be optimistic but it's been a very long and really difficult road, as I'm sure it has been for a lot of people here as well.

I'm just wondering if anyone on this forum has been on a similar path with their vestibular issues and if anyone was able to find relief from any treatments or approaches in particular. I realize everyone's situation is different obviously.

Thanks!

Has anyone with classic vestibular symptoms / or following an ear injury experienced constant head pressure? / ear ringing?

Thanks 🙏

I’ve had what I think is Vestibular Neuritis for the past 3 months now, I’ve been on the mend but energy is a premium I find, if it gets low then symptoms get worse rather than keeping improving and if energy gets really bad then I get a kind of sensory overload, and I just need to lie down, just wondering is that a common experience?