Hi vikiwad - Welcome! We'd love to hear your vestibular story and what you'd like to get out of this forum. 

Hello, I'm Nicky from Essex.

I have been suffering what I now believe to be vestibular hyperacusis.  I have awful symptoms when in busy areas, and/or where are lots of different sounds at once.

This really affects my life 🙁

Good evening everyone,

I have joined this evening in a fit of frustration as I find myself struck down with yet another vestibular attack.

I have a non specified vestibular disorder. My consultant thinks it was caused by some surgery I had 6 years ago that caused some crystals to become dislodged. I live with low level dizziness, tinnitus and brain fog daily but every now and again I get a big attack, like now. 

I have had vestibular physio which didn't help much so my next option is surgery which I would prefer to avoid of possible. 

I guess I just feel a bit low that I have to live like this and 6 years feels such a long time. I am a single parent with 4 children so when I get a very bad episode I just have to muddle through. 

Hello Everyone!  I'm Sonia from New York.  My vestibular journey (nightmare) started eight months ago.  One day I woke up and, out of nowhere, my head was spinning.  Since then my days have been filled with doctor's visits (I'm on my fourth neurologist), MRI's, CT scans, x-rays, hospital visits and countless rounds of testing.  All anyone can tell me is that I vaguely have a vestibular disorder.  I completed courses of balance therapy and vision therapy with no luck.

I'm praying for some relief from this disorder that has completely taken over my life.  I'm glad to be here on Veda!

Hi Everyone. 
I’m Jim, from the Charlotte area. I’m almost embarrassed to post here, because my symptoms don’t begin to approach what many of you are going through. Nonetheless, they’re frustrating and activity-limiting, and they seem to be progressing. That progression has me concerned. My symptoms are what I call motion-induced nausea. No actual dizziness. Just nausea, brought on by head movements, primarily up & down, but increasingly side-to-side as well. I’ve been to a succession of ENTs and neurologists, with X-rays, MRIs, and eye-ear testing, all with no diagnosis.  
I’m here because I want to learn about these disorders, to see if anyone shares my symptoms, to find a diagnosis and treatment, and ultimately to help others who are in the situation I’m in now.  
I’m looking forward to sharing that journey.

@jimd

Hi, I'm Diana!

If ENTs and neurologists haven't been much help figuring things out I would recommend finding your closest teaching hospital with a neurotologist. My local ENT referred me to the Nebraska Medical Center and that has been a game changer for me. I'm still struggling with meniere's after 25+ years but we keep moving forward to find answers and solutions. It's a long and difficult road and takes A LOT of patience but what a difference it makes when you have a doctor who is walking it with you and refuses to give up and keep searching for ways to treat. My doctor also diagnosed me with vestibular migraine which cross over with similar symptoms as meniere's and up to 50% of meniere's patients have this as well. I'm treated with Venlafaxine 75 mg once daily and this has helped with that greatly!  It's an antidepressant as well which is often an issue with MD patients, so win-win!

I have gone through all reasonable treatments these last 3 years after the meniere's has been visiting a few times a week, sometimes more, sometimes less. I was luckily diagnosed in the beginning by a pediatrician I worked with at the time (I'm a nurse) when all of a sudden my world was spinning and I'm clinging to a wall at work. I saw an ENT the next day who just happened to have meniere's himself! It was a slow progression at first with attacks every 5-7 years, but eventually it became yearly, then the gap closed up and 3 years ago it became "chronic" and part of daily life. 

I follow a low sodium diet which is a big trigger, take diuretic (dyazide), have tried dexamethasone injections x 3, endolymphatic sac decompression x 2 with the second one being a bust with destructive dense fibrous scar tissue. I finished up with my third gentamicin injection 4 weeks ago and still have milder meniere's episodes 2-3 times a week so far.  I go for balance testing next week and see where things are. I've had a hearing aid for nearly a year and that has been very helpful, but takes patience with the adjustment. I work from home as a triage nurse and my work has been very accommodating which helps me do what I love to do and be productive and pay the bills.

My biggest piece of advice - You CAN NOT give up! Find the right doctor like I was blessed to do and will guide you through this nightmare. You need solid support in friends and family. Hang in there!

I am a homeopath for 25 years in Melbourne Australia. Ive had two major episodes of vestibular disorders. Mixed diagnosis, officially, but I have a high riding jugular bulb which is known to cause a Meniere's like syndrome. I had almost the full spectrum of known vestibular symptoms, and then some. I had to work it all out for myself, with Drs here thinking it was just depression and panic disorder. As they do! I learned an awful lot the hard way, by being really unwell, and by always looking further to figure out what was going on, and how I could apply homeopathy. We have over 8.6 thousand remedies so far to choose from, and the answer could feasibly be any one of those at a given time. "The patient, not the disease". I have come a very long way (twice, ten years apart), and continue to find more answers. No two sufferers are the same, and it's important to follow progress and changes in symptoms. Find out what happened in the time before onset of symptoms. LISTEN to the person. What is there which is a repeating theme in their life? Sometimes the right remedy is found in this way, which might be a remedy not actually listed for "vertigo" (the broad term covering giddiness as well as actual whirling spinning vertigo). Almost 700 remedies are listed at present for "Vertigo". It's important to get the whole story, and not just focus on the one "condition" in a person. Some of my personal experience of vestibular disorders is detailed in my practitioner listing at VeDA. I'm grateful to VeDA for all the information on vestibular conditions. My focus then is on the individual, and how they are personally in their condition (which is normally different medical conditions overlapping).   https://vestibular.org/members/annesash-homeopathgmail-com/profile/

My Name is Kat. I was first diagnosed with Secondary Bilateral Endolymphatic Hydrops in 2016. In addition to that, I have recently been diagnosed with Vestibular Migraine aka Migraine with Vestibular Aura. That is the ship I am learning to sail. It's a challenging task. VEDA has been a great navigational tool.

Hi. I've just discovered this website and forum, through a comment on the Vestibular Hope facebook group. I am an Englishman living in France. Nearly two years ago I had an accident which left me in a coma for two weeks, and in hospital for 7 months. I had suffered head injuries which, among other things, damaged both inner ears seriously. The ossicles of both ears were destroyed, leaving me totally deaf (I now have bilateral cochlear implants, thanks to French social security). Also the balance organs adjacent to those tiny bones were destroyed. For months I couldn't even get out of bed unassisted, and then could not walk unsupported. After months of rehab, vestibular therapy etc, I am now able to walk 3-4 kms on regular surfaces. For something more challenging (broken pavement, woodland path, steps) I need a walking stick (or sticks). My balance problems are, of course, constant, 24/7, and exacerbated by double vision, also caused by my accident. Prior to all this it was a great pleasure for me to walk on our local hills and mountains, and four years ago I walked the 800 kms of the Camino Frances in Spain, with 12 kgs on my back. Hard to imagine myself doing that now, but my morale is surprisingly good, even if I still have some negative periods too! I live in constant expectation of (another) miraculous recovery of my abilities - many witnesses, including medical staff, have been surprised that I survived, and have recovered as much as I have, but I want more! I look forward to reading the experiences, trials and successes of others with similar symptoms.

Hi Eveyone

Im James a Veda ambassador from the UK and have been diagnosed with uncompensated labyrinthitis which i have suffered with on and off over the last 15 years.

Im here to help if i can and where possible help spead awareness and knowledge of these very much hidden conditions to help people get the best course of treatment to get their life back on track!

Hello everyone. I am Cath, a 71 year old retired Nurse Practitioner. I had my vertigo attack on Monday at the dentist and can’t get in to see anyone till Monday. Everything I have learned has been online so I will be grateful to get any suggestions, help from people with experience.

Hello everyone I'm  new here.

My name is Sandra 48 years old from the UK, I have had  PPPD for 3and a half years.

The Dizziness came on 10 days after a holiday, I have had ENT referrals, MIR brain scan and balance rehab.  My balance is now very good. Also had Vestibular rehabilitation. 

But I sadly still feel unwell with dizziness. 

Since November 2020 I can no longer watch TV use a phone or IPad for longer than a few minutes with out feeling nauseas .  My husband is writing this hence the bad spelling and grammar.  Lol.

I have been doing lots of exercises to help my self but it just won't go, and now I have left my job as I'm to exhausted after a small amount of work. 

My local Doctor is rubbish  just want me to take antidepressants. 

Please can you HELP?

Hello, im Lance a 37 yr old male.  My problems started after a Bilateral Carpal Tunnel Surgery DEC of 2019.  After the surgery i Thought i needed new glasses because my eyes were terrible.  New Glasses made it Worse Like my eyes could not focus.  I remember an episode of sitting in a restaurant facing a window and a person was moving back and forth in front of the window with the sun behind them.  It was like and instant dizzy head attack and got sick.   In January I had an episode where i had extreme vertigo and ended up in the Emergency room.  They said BPPV.  I did not really know what any of this was.  I then went to an ent and was diagnosed with meneirs until i got a new symptom which was loud noises hurt my ears and head.    Then after a couple months i was told to see a neurologist.  They said I have vestibular migraines.  I have tried multiple medications, prizm glasses, have had cat scans and mri's.  Right now usually everyday i have an episode.  I have not figured out if i am having migraines everyday or if something is causing it.  This is my usual day.  Wake up feeling ok and go to work.  A couple hours and i start getting eye problems like they can no longer focus which i think makes them sensitive to light they get very tired like i want to go to sleep.  My ears ring and are very sensitive to noise.  I get a brain fog and my arms and legs get weak and shaky and sometimes nauseous.  I feel like i have an extreme hangover but without a head ache.  This will last for hours to days.  I rarely feel like i have relief it seems.  Like it is always there.  Things that make it worse.  Walking through a store, driving, bright lights, rapid eye motion, or it just happens.  I think i have vestibluar migraines the way they can just happen.  I thought my eyes were causing it for a long time but i think my eye problems are a symptom.  It is so hard to figure out.  I wish it didnt happen everyday so i could feel normal for a while and enjoy things again.  It is just wierd.  

Anyway thats my long story short.  After many thousands in Drs and Tests and medications i am the same i was a year ago.  Trying to get a handle on it.  

Hi, my name is Dawn.  I have PCS, diagnosed in 2014. I started seeing a new doctor in 2020 and I am just learning that I have vestibular nerve damage and who knows what other brain damage- 13 years after my original debilitating fall injury. Well, that explains a lot!

The trauma I have been through because of the missed diagnosis makes me sad and angry. I am in a bit of a crisis after being denied help on every level for so long.  Truth is, those doctors and the bullies were right.  It IS all in my head.  Now how do I come to terms with it?  Bullied, abused, assaulted, shunned, ostracized, and left to die for so long now.   I don't know where to turn or what is real or who to believe.  Is this really ever going to get any better?  

How are others managing to support themselves and their dependents long-term through this?  Keeping a household, bringing in the income, and keeping everyone else organized and together.  Having a brain injury doesn't negate financial and social responsibility.  Just ask the IRS! I am failing at everything and having huge meltdowns every day. I have no quality of life left. Yet I'm expected to do everything anyway. American Individualism at its finest! 

Is there an organization to help people dismantle their lives into something sustainable after a disabling condition?  Where do I turn? Where do I start? What if those around me are reliant on keeping things the way they are, and so they won't let things change, regardless of how much it hurts me?

Maybe I'm not even looking for an answer here.  I get that every person's situation is complicated.  I am just expressing extreme frustration, needing something to grasp on to that is real.