Labyrinthitis/ Vestibular Neuritis...Please Help

Hi was reading your post..just wondering if you are totally well now? Your story sounds similar to mine..any chance you could let me know? I am 26 year old female going on 9 months having this would love to hear if you have recovered x

Were you diagnosed with Vestibular Neuritis?

Hi, no have not been diagnosed with VN seeing a neurologist in February. Have seen an ENT in November who said he thought a virus has attacked my inner ear and caused nerve damage. Gp said it was labrynthitis in April when first diagnosed.(Although no hearing loss) Had fluid behind my ear drum during may and June. Just dizzy constantly and imbalance in my left side of body. And right ear feels like something is crawling in there few times a day. Dizziness has got better over the 9 months but its still there at about 50%. Have you been diagnosed with VN? Anything sound similar to you? I only registered to this site today feel very low. Keep thinking god willing by next Christmas it hopefully will have gone. Merry Christmas by the way Xx 

Yes, I have been diagnosed with Vestibular Neuritis affecting my left ear.  My symptoms began with sudden onset of vertigo and then 6 months of horrible symptoms.  Had dizziness, loss of balance, foggy head, inability to focus, nausea, intense feelings of lightheadness, and a full feeling in my left ear.  From my internet research early on I thought that the symptoms I had closely matched Labrynthitis but, had no hearing loss.  My understanding it that that is what distinguishes the difference between VN and Labs.  With Labs there is damage to both vestibular nerves.  With VN only damage to the top nerve.  However, treatment is the same for both.  Early on an ENT told me that I had BPPV.  I did exercises for 6 weeks for that and never got better.  At 9 months I have some days where I feel lightheaded but, those for me are usually driven by stress or weather issues.  I read an article on the VEDA website that put in perspective that with a vestibular disorder, improvement is measured in weeks and months, not days.  That has so proven to be the case for me.  I am improving and would say that I am probably 90% - 95% myself most days.  Have you done any Vestibular Rehabilitation Therapy?  (VRT)

Merry Christmas to you as well.

My name is Terry, by the way.

Hi Terry, did a neurologist diagnose you and I'm guessing they did tests to confirm diagnosis? No the ENT didn't refer me for VRT. He referred me to neurologist and audiologist. Hoping they can be of more help as ENT was not helpful at all. He gave me about 5 minutes to talk to him. You say you had nausea which I have never had. First time it hit me I started spinning kept feeling like I was going to pass out. I have to say I've smoked weed a lot of it for ten years everyday , but since I have come down with this I have not been able to have a single toke of it-its been 9 months. I had a drink back in October few glasses of wine which seemed to trigger the symptoms of again. Have you had more then one vertigo attack in between the dizziness? Annoying how ENT diagnosed you with BPPV and then being told you have VN. Its true about measuring this illness with months rather then days. Are you better when you're out in open spaces as opposed to being in the house? Sorry for all the questions just know one I know knows anything about this illness. Although on the web there seems to be lots of people suffering with this X

Replied to you on your email. 

A neurologist confirmed that it was VN.  I had to press for tests with my original ENT that diagnosed BPPV.  I had an ENG which confirmed Vestibular loss with what they said was also was a Central component, indicating that I had some damage to the Central nervous system.  I don't believe the Central damage diagnosis.  After VRT and feeling like I wasn't getting well quickly enough I began seeing a Neuro-Otologist.  They specialize in only inner ear issues versus a Neurologist that usually treats neurological issues.  Not to say that the two are not associated but, a Neuro-Otologist only deals with issues of the inner ears.  He He confirmed VN and put me on a restricted salt diet, 2000mg per day, no alcohol, chocolate or caffeine.  These things sedate the vestibular nerve and prolong compensation.  Anything that sedates the vestibular nerve will keep your brain from compensating.  i.e. the Xanax that I took early on as well.  I live in the US and seeing a doctor of choice seems far easier than what I have read in posts from the UK.  VRT, in my opinion, helps this condition tremendously. Along with time for the vestibuklar nerve and inner ear to settle down.  Some places I feel better than others.  I feel fine at home but have visual issues when in large stores.  The busy environment along with high ceilings and flourescent lights cause issues with your visual-occular reflex, the coordination of the eyes and what your vestibular nerve sense.  Some days I feel almost back but, then others I feel that I have a ways to go still.  Anxiety places a factor in this as well.  From what I have read anxiety feelings reside in the area of the vestibular nerve connection to the brain and is a symptom for most of us.

I only had the one attack of vertigo when it all started.  Everything else was from the damage done during that short duration.  It is important to have tests done to rule out other diagnosis that cause some of the same symptoms.  I saw a neurologist early on to rule out MS.  Thankfully the MRI results were negative for MS or a stroke.   

I have really benefitted from your post and appreciate all you offered.  In comparison I am a newbee but also sure you can understand how in no time at all this Vertigo gets old fast !!

Although I have adopted a mantra of "time and patients" I did not know that any healing could take this long.  I am currently seeing a physical therapist for rehab, which I am assuming is what you are referring to as VRT??

I had the initial Vertigo Slam about 4 weeks ago where the room was spinning out of control and nausea and vomiting and freak out !  So I went to the ER and spent the night.  I had a CAT scan and an MRI, which I am now grateful for as you suggest.  Since then I have had gradual and steady increased balance in my physical body (like from neck down) but continue to have good-ish and bad days "in my head", so to speak.  It feels like turning my head in most any direction throws me off and my "inside" head tries to catch up.  Not sure if that is what you were referring to as light headed or dizzy?

I have another PT appointment on this Wednesday and will ask about seeing the Neuro-Otologist for further diagnosis.  We had made an assumption and proceeded as if I have BPPV.  I tend to think not at this point.

Any further input would be appreciated.  And, again, thanks so much.

I have a similar condition. It started after I had an orthodontic work done... I had to stop the dental work, but the symptoms did not fully go away. It has been almost a year. Do you know what triggered your first episode?

Of course, being one with this very upsetting condition, I am sorry and send you my best.  And, no, I have no idea what triggered the initial Vertigo.  Sorry.  

The only clarity I can add is that the initial Vertigo was that the outter world was spinning around, to the right, and now my inner world is all messed up, generally when ever I move my head.

Thanks for your reply. Hope you feel better soon...

You are right, it doesn't take long for it to get old.  The biggest issue for me was feeling that it wouldn't go away.  At 9 months it still feels like that some times but, I look at where I am today and where I was just 3 months ago and there is a world of difference.  I still have sensations in my head when I turn fast and sometimes I feel that dizzy kind of rocky, like on a boat, head feeling.  I have issues off and on with my left ear feeling full and a lot of crackling and popping in it, my left ear, on swallowing.  The exercises are what I am calling VRT, Vestibular Rehabilitation Therapy.  My Otologist told me that the important thing to remember is that you get over it when you get over it.  Everyone is different.  I too had two CT scans and an MRI, numerous blood tests, and even ended up having other systems checked out due to my original ENT telling me that nausea and other GI issues were not associated with VN.  Everything I read says that they are and that the anxiety piece is what contributes to that as well.  BPPV is usually a secondary occurrence with VN.  My physiotherapist had to clear that in order to begin treating with the exercises directed for the VN.  I also had a set back because I found some VRT exercises on some web site and figured that the more I did the quicker I would recover.  Wrong!  These exercises have to be measured in their application and while they will seem like they are not doing anything the results come with the course of time.  My balance is near perfect, at least as it was before my episode, at this point and the remaining issue for me is the sensations in my head.  That is also impacted by seasonal allergies and the fact that I had a bout with the flu 3 weeks ago.  My advice is to stay optomistic, do the exercises as prescribed, push yourself to do the things that you want to do and have patience with the results.  It can and in most cases will get better. We just can't control when.

Thank you for all posting about this.

Three weeks ago I randomly out of the blue started getting dizzy. Like I had 2 glasses of wine (without the wine) and am foggy and cloudy. At the same time my blood pressure has (always) been high, so when I decided to go to the doctors my doctor just kept sluffing me off saying she didn't know. I ended up in the emergency room and the doctor gave me some medication for it, it isn't working tho. Has anyone felt that no one takes this seriously? I am so depressed about this, I am a go go kind of person and I haven't been able to do much. Is there any hope with this?

Yes there is hope.  You may not find a quick fix but, you will definitely find those in the medical field that have no clue about the condition.  From most of the postings on this forum you will find that it takes seeing 3 or 4 doctors to get any direction.  I would recommend that you seek out a Neuro-Otologist.  The inner ear is all that they deal with.  Of course BP can cause some of the same symptoms so you really need to determine what the real issue is.

Hi Terry - you had mentioned you had a number of GI issues with your VN. I was diagnosed with VN two days ago although my first bout of vertigo happened almost 4 weeks ago. I had two bouts of vertigo while turning my head left when laying down in bed and the second one that happend 3 weeks ago led to the condition I'm in today. I'm experiencing all of the same things people are writing about in this forum (anxiety, ear fullness, ear popping, constant dizziness, etc.), but I also have been having GI issues like burping every time I eat or drink and a definite increase in diarrhea. I asked the ENT about those symptoms and he said it is likely a result of the same virus that has attacked my inner ear. Did you have similar symptoms with your VN?

I haven't been referred to VNT therapy or had any other tests done. I have started meditating, yoga and am going to get my first accupuncture treatment tonight. My ENT basically told me it will go away and likely will never come back, but that it will take some time.

I had a mental breakdown at my therapist last Friday because of the dark thoughts around how I was going to live like this for the rest of my life! I'm happy to note that my condition has gotten a little better this week, but today is a hard day where I am experiencing a lot of movement inside my head. It makes it so difficult to sleep sometimes. I've been on dramamine for about two weeks, but the ENT told me to wean myself off it because it was hindering compensation. I had to take 1/2 pill last night at around 11:30 though because I couldn't sleep with all the motion in my head.

This is totally exhausting. I find it very hard to work and generally just to be in a good mood. It's so strange how one day can be pretty good and the next pretty bad. I guess I still have thoughts of something terrible going on since I haven't had a MRI and other tests done. Especially since I've had such strange GI issues. Thanks for listening. It does somewhat help to know others are experiencing the same thing although I wish everyone was reporting that they were cured quickly!

No quick cure.  I thought for months that I would wake up one day and it would be gone as quickly as it came on.  I have found that it does not work that way.  I have been dealing with the aftermath of a single incident of vertigo for almost 10 months.  Early on for me I saw progress but, I believe that the Xanex I was taking masked some of the symptoms.  After I stopped the Xanex, due to lack of compensating, it was terrible for 6 to 8 weeks.  Early on I had constant GI issues.  Nausea and diarrhea and my ENT told me that there was no association with it and the VN.  Everything I find online says that the two do go together.  I have finally started to feel closer to my old self the last couiple of weeks even though I still experience some issues.  As recent as a month ago I would have good days and then a terrible day, dizzy and nauseated.  I have had 8 or 10 good days in a row over the past couple of weeks and I continue to see progress.  I did just finish 2 weeks of oral steroids though, and they usually make my symptoms better after I take them.  I saw a Psychologist for a month or s early on but, all she wanted to do was to try to psycho-analyze me.  We are not crazy, the inner ear issues just make us feel like we are going crazy.  I stopped that therapy as I felt it was not getting anywhere and to beat that, the Psychologist that I was using was a sufferer of Menieres at one time in her life.  You would think that she of all people would have understood the anxiety and mental stress related to the conditions of the inner ear.

It's easy to get down and to feel that there is no hope.  I will tell you that there is hope and that you can overcome this condition if it is VN/Labrynthitis or BPPV.  Some other inner ear damage is not easily overcome.  If you are seeing progress as you note, you just need to keep working at it.  The VRT will definitely help as well.

I'll keep it short but our conditions for a lot of what you express are very similar.  I had, we all are assuming, BPPV and then it's been swimmy head trying to catch up since.  I too have good days and bad days. I too figure if I were to take an anti-depr., which seems at times a possible nice recess, I would just be switching my focus and that does not seem proactive.  I have had two pretty bad down days, usually centering around "this may never go away" kinds of thoughts.  Then there are good parts of days, ususally near the end of the day, where the head doesn't swim around quite as much.

Nausea was only a part of this for me during the onset of the Vertigo, when the room was spinning, not my head.  That was bad.

I generally feel that I can only continue on with the exercises, and when I catch myself - usually stuping down and then up, or head to one side as if to look under the table, I loose my balance, in which case I try to recreate that action and work on being balanced in that action.

I am an old surfer who has plans for many more years of surfing, so that will be the next "test", that being to see what the swimming head does with all those balancing movements one does whilst riding a wave.  What's the worst that could happen . . . I fall in the water  ;-)

so we just keep working at it . . . and sharing !

Yeah, I had the issue of bending over or forward and feeling that I was going to fall over.  Also, had a symptom where when I would turn my head to look at something it felt that my eyes would have to catch up with my head.  Had a feeling when walking that my head, or visual field, was bouncing.  All of that is gone now.  I place a card on a wall about 18 inches from my face and would do exercises where i would nod up and down and try not to loose focus of an X on the card.  Did that for 1 minute, rested 1 minute, then rotated my head left to right for a minute and tried to keep focus of the X.  If you have this issue you can find exercises on You Tube for Gaze Stabilization that will help to overcome these issues.  Just don't overdo it.  I do most of what I want these days, just have a little dizzy feeling if I move my head quickly left and right.  Hoping that will eventually go as well.  It's hard work but, given the alternative we have to keep at it.

Thanks Terry . . . I am definintely going to try that.  What you described is exactly what I am going through now.  Makes sense, if we can even compare, as you are down the line of all this from me (1.5 months).  Only thing additionally I can add is that the "to the left, to the right" is rendering a slightly different response between the two:  As I look left things seem to move to the right in facets.  As I look right, I get an uninterrupted view.  So I work with that one also.

I will try your "x" marks the spot immediately and see how it pans out.

Keeping at it !!

And THANKS !!

Hi! I am so pleased to have found this site,. I had my first and only vertigo attack in August last year and was diagnosed by 3 doctors as having BPPV. I knew it wasn't BPPV and wouldn't let up until I was referred for an MRI and to see an neuro otologist who after doing some amazing tests told me that I didn't have BPPV, but VN. The MRI was clear thank goodness. By then it was coming up to Christmas and I couldn't get in to se a specialist physiotherapist because here in Australia we of on holiday for most of January and also there is a distinct lack of these specialist physiotherapists. The neuro otologist gave me some exercises and I must admit I found them tedious in the extreme and didn't always do the.  I did however keep going to the gym and swimming - I mpnow have to wear ear plugs in the water as when the water goes in my ears it completely upsets my balance in the water and my whole body can rotate - most unnerving, especially the first time.  Also backstroke is dodgy as I tend to end up going towards the middle of the pool, something I never did before.  But oh well, every little bit helps!  I now see the Vestibular physio and have the range of exercises.  They are still tedious but I try to do them twice daily and I think they are helping. I walk as much as possible too and look from side to side as if window shopping, also do balance on the fitball in the gym and standing on one leg and balancing.

 It is a long process and I did not know that about alcohol. salt and caffeine, having a sedating effect. although I have realised that alcohol does have an effect. I will now cut out the morning coffee and stick to tea. I don't eat a lot of salt or salty things but I will keep an eye on that intake too, so thanks for that info, really helpful.

Like other posts on here that I've read, I find some days better than others.  Last week I had almost an entire 4 days or more when I didn't even think about having VN but this week am conscious of it again.  

I also get get very tired, sometimes quite suddenly and going into the CBD and shopping malls really makes me feel quite unwell.  Oh well, think of the money I'm saving.

i am just so pleased that I am not working at the moment. I was made redundant last year. Could not have coped having to do a full time job and deal with this, that's for sure.

i hope we all feel much better soon.

Hi Terry I am glad I ran into this, I've been dealing with this issue for 4 years now and past few months it was good but it hit me this week and I had my first experience with the dizzy world when i was sleeping and turned my head to quick and the world started spinning. Now I am dealing with floatyness . I really wish it would go away for ever.

I cannot imagine dealing with this for 4 years.  I am in month 17 of what I hope is a full recovery.  I have gotten progressively better each month but, still suffer from a light headed feeling in large spaces.  I had vertigo, the spinning, when this initially happened but it only lasted for a day.  The first 7 months of recovery for me were terrible dealing with a heavy head feeling, fogginess, balance issues, you name it.

What have you done to address it in the past?

Hi. As it's been over a year since these postings just wondering if you're still available to answer some questions I have? Thanks

Yes, I still monitor posts to this site.

Hi terry. I'd like to thank you for your postings as I've only just registered after feeling so fed up of my symptoms. This all started for me in sep 2014. I was told I had labyrinthitis and told it would go. 5 months later when I was no better was referred to ENT who did the Epley. A month later I had a test done which showed no BPPV and told to give it a year and it would go. Had an MRI scan and started VRT in May 2015. I was given so many exercises that were taking over an hour to do each day and felt so much worse. The audiologist told me to stop and she would send for me 2 weeks later but never did. Eventually I started VRT with a private physio in sep 2015 and I had been progressing with the exercises. 3 months later so by November I started to see light at the end of a very dark tunnel. Then wham... Caught a virus where I lost my voice and all of my symptoms came back like from right at the start. Did this ever happen to you? Now all I can manage with my exercises is one of them for 20 seconds when I had got up to 1 minute. My physio has told me to get up to 30 secs then introduce some other exercises. It's so disheartening when I thought I was nearly there and seeing the back of this thing. Also I'm interested in the giving up of chocolate. I eat so much of it!!! How are you doing?

Oh sorry forgot to say my hearing test was normal and my physio told me I have VN.

This is a strange illness.  I have had several things that have occasionally set me back over the 22 months that I have been trying to fully recover from VN.  The problem is that there are no true tests to diagnose VN, it is diagnosed as a process of elimination.  Even within the diagnosis there are several things that can be impacting the inner ear.

I was hit in March of 2014.  I struggled for the better part of a year with a stuffy head, bouncy vision, headache, balance issues, nausea, you name it.  I did struggle early on with VRT therapy that I tried from the internet and that set me back as I was doing too much.  I thought that the more I did the faster my recovery would be.  It actually set me back several months.  My physical therapist prescribed VRT exercises that took me 10 to 15 minutes to perform.  Even while doing them it was hard to see progress but, after 6 or 8 weeks I began seeing substantial changes evry two or so weeks.  I'm not sure if it was the exercises or just time beginning to heal my body.  I can't understand anyone giving you over an hour of exercises.  My max was 20 minutes 3 times a day.

I am recovered around 95%.  I do still have occasional setbacks but, they only last a day or so unless I get a cold or have sinus issues.  I have been battling constant sinus issues for the past 6 weeks and it has been a challenge. Barometric changes also affect me and symptoms recurr each time a storm from comes through. 

The VRT exercises are good and you should challange yourself as you do them.  Your PT will add more/different as you see improvement.

Others on this forum have talked about setbacks that took them back to the initial symptoms.  My initial episode began with severe vertigo and then I have experienced the residual VN symptoms for the past 22 months.

My Otologist placed me on a low sodium diet and told me to cut out caffeine, chocolate and alcohol.  The low sodium reduces fluid on the inner ear and the caffeine/chocolate act as stimulates affecting the VN symptoms.  Alcohol is a vestibular sedative and causes issues with compensation and adds to already existing vestibular deficits.

The other things that I have done is to add a vitamin D supplement, gingko and ginger tea.  I try to stay ahead of sinus issues also.  I use a nasal rinse each day and see my GP at first sign of symptoms and usually get a steroid injection.  Another poster on here recommends Echinacea, which is an immune booster as well as good for sinus issues and inflamation.  I do occasionally see a chiropractor and massage therapist for neck issues.

Have you fully recovered from the viral issue?  Do you suffer from sinus issues?  

Great to hear you're at 95%. That gives me hope!! No I don't have any sinus problems and I started with the throat virus 18th December which brought all my original symptoms back. I feel I'm over it though everyone around me at work seems to have a bad cold and I feel as though I'm fighting it off all the time. So my symptoms now are motion in my head like brain shift, chronic fatigue that just seems to come on, bouncy feeling in my head when I walk, brain fog, not being able to sleep properly as I feel I'm on a boat and anxiety problems. I'm so fed up of it all. I had such a stressful year last year and I wonder if all that stress has hindered compensation? I do work and feel that surely must help the brain to compensate though I do get stressed.

My physio told me after my recent virus to go right back to the start of my exercises and build up again but I just feel like I've gone backward which upsets me and in turn, stresses me out!! I will stick with it though and do without chocolate!! Anything that helps!!

My sister in law has migraine associated vertigo and she finds a chiropractor helps her so I'll try that too.

It's helped me immensely knowing I'm not the only one with this. No one understands or ever asks me how I am because I look well. It's difficult and as you say, a strange illness.

The issue that I had when presumably I over did the VRT was 3 months after I was originally hit. A similar virus has been going around where I am and I have had some residual symptoms for 6 weeks. I'm on my 3rd round of antibiotics.

I would try the low sodium and the ginkgo for inflammation and improved blood flow. I can send you a website for some visual saccades that I used for my visual rehab if you like. They are kind of elementary but, I believe they help.

I think a lot of us get diagnosed with migranes since they, the medical profession, can't find anything else. All of us have had tests that all, for the most part, come back showing nothing is wrong. As you said we look alright on the outside but, no one but a fellow sufferer knows what it's like on the inside.

I really think that the main ingredient is time. I know that I couldn't go in large stores without issues until a couple months ago. That was 20 months after this journey began.

If you have a good physio you are ahead of a lot of others. That can make a difference but, it takes time. A lots of time. One poster on here had a setback 5 years after her first event but, she indicated that after a few months of VRT she is progressing toward recovery again. I believe that she indicated that after 2 or 3 months she was back at 90%.

I wish you the best and am happy to answer any questions that I can help you with. Don't be surprised if it takes a month or so to start seeing progress again. I am a firm believer that we have to set a course of things we do for our recovery and then stay that course. There are no quick fixes for this and as much as I hate to say it, most of the medical community is useless in getting us where we all want to be, and that is recovered!

Thank you so much for your replies and advice and for giving me hope again. It's a dark tunnel all this and to see that light at the end of it gives me that hope. I wish I had your positivity and that is something I'm having to learn. That and patience which again I struggle with.

I don't eat much salt and don't drink caffeine but I'm giving up chocolate as from today and will try the ginkgo. So that teamed with a better mental attitude and continuing with VRT is surely going to beat this thing.

I wish you only the best for your journey too. We will get there.

When you look at sodium intake, salt, be sure to look at any packaging details.  Processed foods are the worst.  You'd be surprised how much salt we take in on a daily basis without adding any to a finished meal. As you probably know, it's not about adding salt to suit our taste. My limit from my Otologist was set at 2,000 mg per day. Not sure if you are in the US or UK.  If you are in the UK that amount is like 5g of Sodium.  In the UK the average daily intake is 8.1g of sodium. In the US the average daily intake of salt is 4,700 mg.  Not sure why it is not measured the same way but, you can see that both countries almost intake double the recommendation.  Eating out usually adds even more to the totals.  All processed foods have high amounts of sodium as a preservative. Look at a label for ice cream, it's even in there.  MSG in oriental food causes issues as well.

Just a suggestion from my experience. Best of luck in your progress.

I'm in the UK and yes there's hidden salt in everything here!! I've been adding it up in what I've eaten and it really adds up. So 2,000 mg is very minimal. I've managed a day without chocolate too!! I feel as though I'm taking matters into my own hands and it's a good feeling.

Thanks again and good luck too!!

Are you still ill ? 

Hey, Terry! Your experience sounds very similar to mine. Hit with VN last November. After a few months I felt pretty good. Almost forgot about it. Then November 1 of this year hits and I wake up w the room spinning again. Plus this year it came w hypersensitivity to sound and ringing in my ears.

Plus all the balance stuff is back.

Just wondering how you are feeling these days.

It has been a slow recovery process for me.  I have recovered to 90 - 95 percent of where I was pre-VN.  I cannot seem to overcome the last indications of the vestibular damage.  I still have some bad days and some environments make me feel unanchored.  When I experience sinus issues it adds to the lingering symptoms as well.  I manage to do most of what I want to do but, there are still some things that pose a challenge and it can create heightened anxiety for me.  I have felt pretty well the last week or so but, feel that I will always have some residual issues.

I went to my Neurotologist a couple of weeks ago and he plans to do another VNG to determine if there is permanent vestibular damage or if the residual issue is actually something else.  I had a similar issue, VN, some years ago and then was hit in March 2014 with my second case.  The first one cleared in 6 or 8 weeks and everything went back to normal for me.  This second one has been more challenging to recover fully from.

What was your treatment course the first time?