Vestibular Neuritis- any recovery stories?

Hi Geraldine,

I've been having problems since March 2012 after I had a sinus infection.  I've been diagnosed with probably vestibular neuritis, visual vestibular hypersensitivity, MAV and now chronic subjective dizziness.  I get that feeling like I'm in a dream a lot.  It almost went away in 2013 but then I was hit again with problems in September 2013 and since then have went downhill.  Now, I'm feeling like I'm in a dream almost all the time. 

May I ask, do you still feel that dream feeling or has it went away and what might help it go away?

I'm so sick of feeling this way, as I'm sure all of us feel.  I wish you the best.

Nicole

Hi Nikki, yes i do get that but i have been told by my Physio, that i have to train my eyes back to the way they were before i got the attack. I have to walk a straight line turning my head from left to right after every six steps. This is alinging my central system. Then i have to pick a spot on a wal and turn my head away but at the same time still looking at that spot. Your head is moving but your eyes stay put. I find this works great and also i find if the lighting is too dull i get that dreamy feeling or when i am stressed. But believe me , it can be coped with Nikki.

Hi Geraldine,

I have a few questions for you:

How long have you had this?

What medicines have helped you?

Did you have any vestibular testing?  Any damage to inner ear or vestibular loss?

Also, are you able to drive and how do you feel while you're driving and in stores?

Has the derealization lessened a lot from the VRT?

Thank you

Hi Nikki, i just posted on vestibular support group and said to PM me if you get it...

Hi Kim, I couldn't find your post. I'm under Nicole Lynn on Facebook.

Thanks for replying Ben, I will have a look at your input. My GP knew NOTHING about these disorders and I found the private ENT to be quite dismissive and he couldn't really answer my questions.  I may go back to a different GP and asked to be referred through the NHS which will take a few moths I would imagine!

Thanks Ben

Hi Ben,

I hope you are still active on this site, and can offer me some perspective. I was hit with acute VN about 11 weeks ago now. It started terrible, I couldn't move my head an inch without the room spinning, and me crawling to the bathroom to vomit. 

I'm at the point now where I can function almost normally, but when I move my head quickly to the left or right, objects in my field of vision move horizontally, and have to "catch up" with my line of sight. If I am tired, forget it, I'm still a bit dizzy.

It affects me in odd ways. It is difficult in a social setting, where I may have to turn my head quickly to respond to somebody who is speaking to me, I feel as though I'm in a bit of a bubble, where I look at the world from inside of it. 

I'm 38 years old, in good health otherwise, weight, blood pressure, non smoker.

I'm wondering what the stages of your recovery were- was the stage I am in now a part of your recovery? If so, did you think that maybe it was as good as it was going to get for awhile? I'm hoping to get better than this, I am doing PT, took prednisone and an antiviral upon being diagnosed.. trying everything I can.

Thank you for any insight you are willing to offer,

Steve

Hi Steve,

I realize your post was 6 months ago, so I hope you are still linked to this site...because when I read what your experiences are, replace it with a female and age 42, and you basically just described my exact current situation.

May I ask how you are feeling now? If there has been improvement, what seemed to work best for you? I'm still doing PT and I have ENG testing in the morning in hopes of getting some more answers. It's so unbelievably humbling, and frustrating, to have these limitations that I can't seem to explain.

I hope all is well and look forward to hearing from you!!

Jen

Hi Jen, I had a caloric test reveal 33% weakness in my left inner year a few months ago and have experienced disequilibrium ever since. I just started VRT, hope it helps. How are you doing these days? Did you have a caloric test do, CT, or MRI? I hope youre improving and staying strong. 

Hi, i just got this about ten weeks ago and started vrt last week. I have inner ear weakness in my left ear and causing balance issues. May I ask how you are doing today? Any advice is greatly appeciated...

Hi Terry, thankyou for sharing your story, it gives me some hope. The ENT I saw recommend a low salt diet which has been easy to follow as I can barely eat so when I am hungry I am trying to eat fresh good quality food. 

The last couple of nights have been awful for me, I think the VRT has sent my brain into overdrive and the dizziness and nausea have been really bad, feels like I'm constantly moving in bed and I have to sleep propped up.   My physio recommended 4/5  sets of exercises 2-4 times a day. I've been doing 3 and trying to go about normal day to day activities 

I may try to find the medications you mentioned, are you in the UK Terry?  The low dose aspirin makes sense and can't do any harm .  Thankyou so much for taking the time to reply and for the advice.  I'm sure I'll be bugging you constantly for advice!  

I need to to work on killing this nausea and getting my appetite back as I am continuing to lose weight and I can't really afford to lose anymore.  I was told that anti emetics can delay the compensation process. Are these drugs you mentioned considered anti emetics?

Thanks again Terry

Hi Terry, I have all the symptoms that everyone is mentioning except I have one that no one has mentioned and that is I have horrific ringing in both ears. I have had these symptoms for over a year now and have been they all the testing you guys have. I did VRT and after a month , the therapists sent me away and said it was not helping and he didn't think that was my problem. 3 ENTs have sent me away also. The ringing causes severe anxiety.   I was wondering if anyone else has the horrific ringing?

Hi Brenda

Yes, I have tinnitus in both ears and it was worsened with the VN. It has settled down some over the past 10 months and sometimes it is back to where it was pre VN. When I have another issue with my inner ear it gets bad again until the ear issue settles down. No cure for tinnitus. Some I know take Xanax for relief.

Also, I find it hard to understand that the VRT was evaluated for effectiveness after a month. Took me 6 weeks to begin seeing any improvement from it. In fact I still do the exercises after 10 months.

Hi Terry, Thanks for responding. Yes after one month of VRT, he said, "you are not improving, something else is going on with you, you are wasting your time and money." I felt very defeated again and lost. I had to look at an "X" on the wall and move my head back and forth. Then I had to walk with an "X" in my hand and move my hand left to right as I was walking. Just curious, what are some of the exercises you are doing? I am desparate and will try anything. Thank you

I'll private message you shortly, if that is ok.

Hi Terry thanks for commenting - everyday I scan google looking for success stories- I've had this 14 months - my ENT diagnosed me with mal debarkment syndrome but I don't beleive it's that- I've one blocked ear and a watery feeling inside - also feels like a tipping to one side and a falling in faloor- especially when I look up- these are problem in the ear symptoms- my actual Dr thinks it's defo vestibular neuritus- I had an erupt bad vertigo attack out of no were vomiting felt like I was gonna die- was in bed for a week then it's got better from there- but it's still doing it and it got better an better - then stopped getting better and stayed the same- it's gone from a rocking boat sensation to a tipping and falling sensation -if I shut my eyes and touch the wall with both hands it feels like I'm falling through a hole ?!!! Will this get better I'm only 23 I can't work it's causing me to be sad an moody but am doing my best to be positive- maybe it's not got better cus I stopped vrt exercises - I don't drink alcohol don't smoke don't eat gluten salt or too much sugar and I'm losing weight fast - I have mornings where I feel loke here's nothing wrong with me then it comes bk like a falling sway - xx

Sorry to hear that.  This is a terrible condition at any age and the hope quickly fades.  I was first diagnosed with BPPV and went through 2 or 3 weeks of exercises, Brandt Daroff, without seeing any relief.  Went back to the ENT and finally had an ENG performed that showed a deficit in my left ear and what he said was Central Nervous System damage.  Began VRT at that time and had an Epley performed at my first visit.  It seemed to help but, I felt the impact of that for several days.  I did 3 months of VRT with a therapist and then continued them on my own, even added some I found on Youtube, and still do them today.  There are so many inner ear issues that can cause the same symptoms that it is hard to determine where the actual damage is and what is malfunctioning.  I have always recommended on any posts that I make for those with any inner ear issue to seek out a Otoneurologist.  They specialize in only inner ear issues and are miles ahead in their knowledge for treatment.  I have seen steady improvement over the course of 10 months even though I still have a ways to go.  Some days I feel like my old self but, others I feel that I am still 90% of where I need to be.  Still have some issues in large stores and some lightheaded days.  I do mostly what I want each day and work full time again with a 1 hour commute each way.  I know that a friend of mine saw an Otologist in Memphis, Dr. Shea, and was told that the ongoing issue of disequilibrium, vertigo or such, could only be treated with Intratympanic Steroid Injection.  He said that it cured him.  My Otologist told me that it would be something that he would look at for me if I did not continue to see improvement.  My left ear had a full feeling for probably 5 or 6 months but, now feels open.  The feeling of fullness is a symptom of nerve damage to the vestibular nerve as I understand it.

I do recommend the continuation of the VRT and the Otologist.  I do see light at the end of my tunnel but, there were times when I didn't.  I felt that it would never end and found little positive reinforcement that it could.  My Otologist told me, when I asked how long it would be before it got better, that it takes as long as it takes.  For those of us that are suffering, those are not very encouraging words but, there is hope of a positive outcome for most of us.  I know that it is easy to get down but, we are all we have in seeking understanding and knowledge.  If you've never experienced this you cannot understand the torment and terror that it brings about.  There is hope and you can get better!  It just has its own timetable.

The low sodium is good for the issue and the only other things that I do each day is take a low dose aspirin.  Did that after reading another poster stating that an old GP that she used prescribed Ecosprin for her and told her it would get better in a couple of weeks.  Hoping that it, aspirin, is helping any residual inflamation.  I have been on 3 or 4 rounds of steroids during my 10 months and I always come out feeling better after each round of those.  I do take .25 Xanax as needed when the anxiety overcomes me.   

Hi Terry,

May I ask, did your or do you have any strange derealization, where it feels like you're in a dream and not here?

I hope that VRT will help this lessen.  I've had problems since March 2012 and felt better during 2013 until that September.  Then it's been downhill from there.  I feel the derealization pretty much all the time.

I have seen a neuro-otologist who diagnose MAV and a neurologist who said it's chronic subjective dizziness.  I just don't know what to do anymore.

Any advice would be greatly appreciated. 

Thank you,

Nicole

I felt spaced out early on but, haven't had that feeling for a couple of months now.  The Chronic Subjective Dizziness seems to be a catch all when they don't know what to do for us.  I have a friend that was diagnosed with Basilar Migrane earlier this week and has began Imitrix for that.  I found that anxiety added a lot to my symptoms and that when I continued to subject myself to the things that made me overly anxious those feelings began to lessen.  VRT worked wonders for me.

Thanks for replying Terry. 

Do you feel that the VRT helped ease and lessen the derealization too?

I go for VRT next week.

How long have you had this?  Did it start after a sickness or sinus infection or something?

Thanks!

I have been dealing with it for 10 months.  It began with sudden onset vertigo.  I have seasonal issues with sinus problems and my issues began in March.  I truly believe that my issues were the result of taking Losartan for my BP.  The VRT desentizes and helps the brain to understand the mixed signals from the inner ear and the brain as a result of the vestibular damage.  I have read that 5% of us that have VN will see a second issue within 5 years.  Have you done VRT previously?

Hi Terry,

I have heard that it can possibly strike again but also have heard that it's rare, but if it does strike again, it's not as bad and your body can bounce back better.  I think anxiety has gotten the best of me and keeping me from getting better.  I'm constantly thinking about this stuff and it's hard to get it out of my mind. 

I did some VRT in May 2012 but when I went to call and make another appt the therapist was unavailable and I called back and still unavailable and they didn't get back to me.  Time went on and I thought I was getting better through the beginning and summer of 2013.  Then Sept 2013 his again with a horrible feeling of disorientation and derealization and feeling detached.  Since then it's just been really bad and stores and cars are not my friend.  I tried some VRT just this past October, but it didn't seem she was doing much.  So, now I have a prescription for new VRT from a specialist.  Hopefully this one will know the correct exercises I need and it will help.

Do you get those horrid feelings that you're in a dream and does it bring on the anxiety?  That happens to me daily and it's so draining.  Sorry so long.  Hope you are doing well.

Hi Terry , I just wanted to ask you a question ...I have been at this VN for a little over 3 months and thought I was "mending" albeit very slowly ....I have had some really bad days in  the last week and my anxiety and feelings of desperation have certainly ramped up ...I have so little appetite though force myself to eat ...have tried deep breathing , relaxation music and I normally will walk about 1.5 hrs per day...managing well with my VRT excercises  and though our upcoming trip to Europe will help me some in terms of mood , I must admit I am stressed about it !

Am very reluctant to take anxiolytics ( habit forming ) but am at my wits end and so desperately want to feel somewhat "normal " Am seeing my GP this week to discuss with him but just thought you might have any advice for me ? How did you manage to reclaim your life ? 

My physio feels the anxiety is what is truly holding me back and this is not the usual me! 

Any suggestions from anyone would be appreciated !

 

In all honesty I did not manage well for 7 or 8  months.  As with all sufferers with VN I was told that it was anxiety that was holding me back and that I nneded to let it go.  As you know that is easier said than done.  What people don't understand that have never suffered from this condition is that the anxiety IS a result of the inner ear issue. A by product, not a secondary unrelated condition.  My experience has shown that you cannot choose to let go of the anxiety that it creates.  I read a paper by someone a few months back that actually understood that the inner ear is where anxiety originates.  He had also researched that people that had issues with heights, fear, had balance issues.  There is a good article on Positive Health that I will send you a private note with the link.  It really puts into the proper prospective what suffering with VN is like.

As with all of us sufferers that are labeled with anxiety, I was referred to a MD that prescribed Gabapentin for me to use for anxiety.  It is an off label use but, if you Google it it will tell you that it is prescribed for general anxiety disorder.  The thing that my research has revealed about most drugs for anxiety, benzodiazepenes, is that they sedate the vestibular nerve thereby delaying compensation and recovery.  The best drug to seek out for help with the anxiety is an SSRI.  I will tell you that I had to and still do use Xanax on occasion to help me when I have anxiety issues.  I take 1/2 of a .5mg once or twice a day.  With a benzodiazepene like Xanax .5mg or less has a very low risk of developing dependency.  Without it there were certain things that I just could not have done.  You have to do what you have to do to get through the "bad days".  I used it maybe once or twice a week as needed.

After almost 14 months I am around 95%  of my pre VN days.  I still have bad days but, in recent weeks they seem to be farther and farther apart.  With VN I have also found that other things that I could previously suffer through, sinus, now are more of an issue for me.  When you have issues like that it makes it seem that the VN is back to a previous level. 

It is no easy road and don't let anyone tell you that you can just let it go.  If it were that easy there would be no posters on this forum searching for a glimer of hope.  From my experience you won't wake up one day and it be gone like it was when it appeared out of nowhere.  Each day for me brought such minor improvements that I can only see where I have come by looking back at where I came from.

I would recommend having something for the trip that you have upcoming to help with the anxiety.  If you can tough it through great but, if you can't you will have something to offer relief.

 

hi terry i was diagnosed with vestibular neuronitis and bppv 18 months ago . i woke up with raging vertigo sickness and sweating and was rushed to  er .blood tests showed infection and i was put on anti biotic drip and anti sickness medication and stematil for the vertigo .the vertigo calmed down after 7 days but was triggered by head movement however i felt drunk  whenever i was awake . i had an mri which was clear so i was discharged after being shown vrt exercises but told it would clear in about 6 weeks . nothing changed so after 3 months my gp refered me to a neuro-otologist . he did another mri which again was clear and did all the balance tests and the calorics showed vestibular nerve problem in my left ear he described it as non compensating vestibular neuronitis and booked intensive vrt which again have  made no difference .however he did an epley manouver which vastly improved  the bppv .. since then  i have seen a neuro surgeon  for  a neck problem and he diagnosed arthritis and  3 prolapsed discs at c3-4and 5  .he said it was possible the bloodflow to the inner ear was restricted at this lesion so i am waiting to be refered to someone else . i am fed up being told  the dizzyness goes away on its own . have you heard of vertigo being caused by restricted bloodflow .  regards p

I have, and also from compression of the nerves that are in this area of the neck.

C1- One of the most important vertebrae in the body to be aligned properly. This vertebrae alone can cause major conditions that can range from sinus issues and congestion to increased blood pressure and severe migraine headaches. Other conditions are ear infections, and anything involving blood supply to the head.

C2- This vertebrae is also very important, and with it misaligned many people get conditions with sinus infections, hearing issues, and relates to the optic nerve for vision. Also very common issues with C1 and C2 vertebrae is balance and the vestibular system which misalignment can cause vertigo and dizziness.

C3- Commonly affects the trigeminal nerve which can cause trigeminal neuralgia. This is a facial pain that can be along three distributions involving the forehead, cheek, and jaw areas of the face.

I believe that this is the reason that so many people with dizziness also experience neck pain.  The resources that you may need to seek out on Google are related to a search based on C1, C2, C3, C4 and C5.  This will get you to more forums where others experiencing neck issues and dizziness have cervical issues as well.

I have been seeing a Chiropractor for about a month now and am seeing some improvement in neck pain and also residual dizziness.  I also have degeneration of C3, C4 and C5 as well as spinal stenosis and osteophytes in this area of my neck.

May be worth a look.

Hi Terry,

Can you please send me the VRT excersises that you are doing?

I'm 37 years old and got VN 2 months ago. Tinnitus started at the same time as the unbalance feeling and is still present. Never had any tinnitus prior to this. Had an MRI yesterday to rule out acoustic neuroma and

results came back all clear. ENT specialist says it should settle in 3 to 4 months time. I don't get that virtigo feeling that some have mentioned (the world is spinning around you). Just an unbalance feeling like I've had a few beers. I notice the disorentation more when I go into stores that have lots of items on shelves all around me. I can't stand on one leg with eyes close without loosing balance immediately. The nausea comes and goes and so does the imbalance feeling. The biggest issue is the ringing as it does not go away and does my head in. I know that Terry says he feels better after 10 months, but does the tinnitus eventually go away as well or reduce in loudness? Research I have been doing says that vestibular neuritis causes the imbalance feeling but labrinthisis causes causes hearing loss and or tinnitus. The ENT performed hearing tests and I have perfect hearing. So no loss there, but I do have the tinnitus symptoms. Does that mean I could have both (VN and labrinthisis)?

The ENT says its VN. Most of the time I think it is coming from my right ear. The way I tell is by inserting a finger in one ear and then the other and the sound seems louder and more prominant in the right ear.

Does anybody know how long the  nerve inflamation takes to receed?

Thank you.

Ihave had tinnitus for years but, it greatly increased when the VN onset.  It has gradually gotten bette as time has gone by.  Probably back to the point that it was at pre VN so, you should see an improvement in it as time goes by I would think.

I have not done any VRT in several months as I have recovered more fully.  What I did begin with was very simple but, VRT is usually customized for the symptoms that you display upon observation.  What I was prescribed was to rise for a seated chair position and then sit back down 10 times with eyes closed.  After that I took an ob  ject in my hand, an ink pen, and with my head fixed moved it left to right and right to left following it only with my eyes.  Did that 10 times.  The took the pen and from right to left and left to right made a figure  8 with the pen in hand and followed that with eyes fixed and the head following the movement of the pen.  Next I stood with my eyes closed for 60 seconds and tried not to sway.  Then I would walk down a hall, or corridor, around 20 feet long moving my head up and down on alternating steps.  Did this 5 trips counting each way as 1.  After that I walked the same length and moved my head left and then right on alternating steps, 5 times.  Then I took a ball and walked it again bouncing thr ball down the corrider while watching it back into my hands.  This all too around 10 minutes and I did this 2 to 3 times a day.

Thease are what I began with and after 3 weeks I progressed to a more difficult set.  They will tire you out and it is important not to over do them.  Over doing them will possibly cause a set back in symptoms.

On the nerve issue, my Otologist told me early on that it gets better when it gets better.  There is no set timeframe on recovery.  Normal duration is 3 to 4 months.  I am in month 19.  If you don't have hearing loss it is more likely VN than Labrynthitis.  Both are treated the same way though.  VN just damages the main nerve, Labs damages the  major an minor nerve leaving the inner ear.  The minor nerve deals with hearing and the major one deals with balance and spatial orientation.

Low sodium is very improtant and staying hydrated.

Hi Terry,

Thank you for the prompt response. I asked my ENT when I saw her last week if she would give me some VRT excersise to perform or tips on how I can help expedite the recovery with excersise. Her response was very blazay. She said that I don't need them as when she did the fast head movement test as well as the standing up with hands held up in front while performing a marching action with my eyes close I didn't sway sideways or fall. I was hoping for more from her response. She seemed to think it wan't really an issue and it will clear up in 3 to 4 months. I guess from her point of view when people go to see her they are normally on the other end of the scale suffering severe imbalance or virtigo. Nevertheless I'm not how I used to be prior to VN and would like to do my best to help my body recover as quickly as possible so I can go back to some normality. VN doesn't help with confidence as we all know especially in a sales role where moving around and meeting people is a key part of the job. The tinnitus I can hide from others but not the unsteadiness feeling that also makes my stomach churn slightly.

I'll follow your advise and start with a low salt diet as well as drinking lots of water. My GP who I felt was move in touch to what I was going through comes off more concern for my well being compared to the ENT specialist. My GP has asked my to perform epley maneuver's twice a day to see if it helps. I'm doing them twice a day (before and after work).

I'll also try the excersies that you have suggested. I'm open to anything at this stage.

I'm curious about the nerve damage you mentioned about. So to understand it better, are you saying there is some irreversible nerve damage or rather just inflammation to the nerve?

I would think that all inflammations, would eventually recede? Is this a correct assumption?

Is the tinnitus I am expericing due to the nerve inflammation or irreversible damage? Note that I never had tinnitus prior to getting VN. Its a high pitch sound where the loudness changes based on my tiredness / stress levels I think.

I find it strange that a virus attack can change one's live considerably for such a long time, even chicken pox only takes 2 weeks for one to recover completely. Oh yes, I did some research and found that VN is part of the herpes family, same as chicken pox. I got chicken pox as an adult 5 years ago (aged 32) thanks to my 3 year old son at that time. My parent swear that I got chicken pox as a todler when I was 3 years old (where I grew up in Malaysia). Migrated to New Zealand in my early 20s. Must have been a slight variant in strains as from what I understand you can't get chicken pox twice.

Thank you so much for all your help.

The nerve damage to the vestibular nerve is what you are trying to heal.  The brain will compensate for whatever level of damage there was to the nerve when you had the initial onset of the VN.  The compensation process is getting back to daily activities and the Vestibular Rehabilitation Therapy.  VRT is usually started if after several weeks you are still experiencing balance/disequalibrium issues.  These things help the brain to recalibrate the difference in the signals that it receives from the vestibular nerve now versus pre-VN.

A virus is thought to be the most likely cause of Vestibular Neuritis.  It can be any number of viruses that researchers think may be the likely culprit.  Truth is, no one knows the real cause.  The damage is caused by the inflamation of the nerve.  Inflamation, as with most body parts, is also enhanced by the build up of fluid.  Hence the low sodium intake to help reduce excess fluid.  One thing that I also do is to take Gingko daily which helps increase blood flow to the inner ear/brain.  Increased blood flow helps in the reduction of inflamation.

When the inflamation goes away the symptoms go away as well as when the brain compensates for any change in the signals from the damaged nerve. Time is a big component of the healing process but, in the area of the inner ear it can take a lot of time.

Sounds that you may have a minor impact from your experience with VN but, enough to know that something is just not in sync with what your eyes see and how the inner ear tells your body how to react.  It is a strange feeling that is hard for those that have never experienced it to understand.

If you have no spinning, vertigo, I'm not sure that I understand why the doctor wanted you to do the Epley manuevers.  BPPV is different from VN.

The tinnitus, if you didn't have it before, is a part of the damage.  From what I have read it may or may not go away.  Vestibular neuritis and labyrinthitis are closely related disorders. Vestibular neuritis involves swelling of a branch of the vestibulocochlear nerve (the vestibular portion) that affects balance. Labyrinthitis involves the swelling of both branches of the vestibulocochlear nerve (the vestibular portion and the cochlear portion) that affects balance and hearing. The symptoms of labyrinthitis are the same as vestibular neuritis plus the additional symptoms of tinnitus (ringing in the ears) and/or hearing loss.  So you may actually have experienced Labrynthitis.  Treatment is the same for both disorders, though.

Hi Terry and everyone here! I wish I had found this site a year ago. I have done a lot of reading about my symptoms, and can identify with everything you are saying. I have oscillopsia (bouncing vision) when I move my head; even when going over a bumpy road is like an amusement park ride! I've had it for just about a year.

It was very hard to describe to someone else, and finally my doctor recommended that I see an ENT, who did some tests, including ENG (caloric) testing. Nothing, nada, almost no reaction to something that should have made me very dizzy. He said it wasn't a "peripheral vestibular" but must be a "central" (brain) problem.

To make a very long story short, I went to physical therapy for what should have been vestibular retraining, but they said I (also) had BPPV (dizziness). After several weeks of Epley treatments and showing me what VRT exercises to do (the head from side-to-side thing, as described above, walking in tandem style, and balancing on a half-rubber ball), they sent me on my way and said the Epley should've helped. I kept saying I could live with the dizziness, but the bouncing vision was making life very difficult as I woul lose my balance whenever I moved my head.

Has anyone else had this symptom? The neuro-ophthalmologist (eye specialist) said the oscillopsia is a symptom of "retinal slip" - which is when objects you are loooking at don't stay focused on your retina when you move your head. Things take a second to "catch up" to where my head is pointed.

I've been doing the rehab exercises for about 8 mos. and see NO improvement. I have been bounced around (no pun intended) from ENT to neuro to another ENT to another neuro, and finally another ENT specialist. Their latest thoughts are that it could be a type of peripheral neuropathy of my vestibulo-cochlear nerve caused by low vitamin B6 levels, or possibly from my diabetes - has anyone had "recovery?" of this nerve (same one affected by nueronitis)?

Hi I've had this over 2 years now. Tried diet. Tried vrt. Tried b6 but didn't stick to it really .. folic acid and magnesium help but not a cure. A healthy diet and exercise and for definite get on with life as normal is the only way. . Too many days in bed makes me worse it's like my brain hasn't had enough compensation that week. Even days I feel awful I have to get up and keep busy. I had rocking boat boucning vision the walls moving up and down and lampshade ect. But that has gone now thank god. I have prayed enough. But it did stick about for 17months . I have falling sensations tipping sensations and sliding feelings left. The bouncing only comes bk when I'm crying. Having a panic attack or shouting at my boyfriend haha. Weather makes me dizzier and feels like I've backtracked. Then a sunny day comes bk an I'm bk to where I was up To it does get better takes its time it does . I live on ginger tea. Camomile tea. I don't have aged cheese or too much chocolate . I do have anxiety but it's because my heart drops like I'm on a roller coaster when I feel the falling sensation. Shopping is allot better for me I feel normal again and had a little heel on even. Going around aldi before an I moved my head to fast an the trampoline floor came bk again. Best to ignore it and say to yourself. Is that all u can do dizziness ?? Because iv coped with allot worse. Stay positive it will go away it's just horrid and no one gets it . Stay busy. I used to think omg I will die like this. I am like this an those ppl r normal . And put myself into some sort of category. Ur still u it's a tiny problem maybe a nerve or a sensitivity in ur head somewhere ... I have been diagnosed with VN and another specialist said MAV . and someone else said MDDS. I've had all my tests done. I hate writing about it and speaking about it now I av come out stronger. I have days and times where I have 0 dizzy at all and it used to be 24/7

... I am greatful for atleast xxx chin up xxx

Sanjeet! Your comment made me realize that my blanace problem started about a month after my shingles (zostex?) immunization last year!!! This is a major breakthrough. No one nas found any reason for my neuritis up to this point. I didn't know VN is part of the Herpes family. I will ask my ENT when I see him next month. Thank you!

I hope you are improving with your problem. ONE RECOMMENDATION, my ENT said a person should never do the Epley maneuver more than once every 48 hours because that type of head movement "undoes" any repositioning that the Epley may have fixed. Ask your doctor, but that is what they told me, and it makes sense. But ask your doc as your mileage may vary... incidentally, ny BPPV has not improved much but I can live with that. It's the disequilibrium that is making my life difficult. Vestibular rehab exercises have not helped me either, been doing them for 10 months now, but maybe they will start helping. Thanks again!

 

Hi Spohia (pretty name). Thanks for your reply I have a few questions when I see my 2nd ENT in a few weeks. I do have migraines too, but no one ever put that together. I think I may have crystals in my posterier canals, which I read here can't be treated by the Epleys (which is what everyone has done to me sometime). The thing I mind most is the feeling that you aren't connected, I veer and look like I've had a couple of drinks unless I am holding onto something when I walk. You should see me walk at night! Not pretty! .

Hi Brenda, if you are in the UK I would recommend going to see a nuerootologist if you haven't already. I know there is a specialist balance clinic with neuro-otologists at The National Hospital of Neurology and Neurosurgery, Queens Sq, London. I went there and they did tests to determins where my damage was. They also have a physiotherapy department attached and I have found them to be encouraging and positive and have started to see results from the exerciese after a long period of not feeling things were changing at all. I also recommend this website if you haven't already looked at it - http://www.labyrinthitis.org.uk/index.htm. It helped me a lot whe I first began to suffer. I really hope things begin to improve for you. Best of luck

Hi Terry! Last September I had a real bad sinus infection. Shortly after that is when I got hit with a huge wave of dizziness/ lightheadedness and has never left. Also unbalanced brain fog.. I have a vemp test in the 23rd. ENT believes I have vestibular neuritis or vestibular migraines. Also headaches everyday.. The only relief I have had in the last 6 months was when I took prednisone for a week. 4 of those days while on it I was a 100 percent but ran out and sypmtoms have never left. You think I need to go back on the prednisone steroid again? That's the only thing that helped

Those few days I was on it I had zero symptoms like the whole thing never happened.. What do you think that means? Plz respond thank you so much

Have you had that injection?? Also, when you took the steroids, how long was each round? What was the steroid called?

After onset of Vestibular Neuritis I took a 10 day prescription, 10mg twice a day, of Prednisone.  I have taken many injections of a corticosteroid called Decadron since that time and 2 or 3 dose packs, prednisone, with a 7 day declining dosage.  I always feel some level of relief after I take them.  They are used to reduce inflamation, which is also associated with this condition and the inner ear.  The injections that I have taken have been in the hip not an Intra-tympanic injection.  Intra-tympanic injections (ITI) are used in the US to treat Meniere's disease.  The steroid in an ITI is dexamethasone, methylprednisolone or betamethasone.

Thank you so much for responding.. I also took that prednisone right after it started. It seemed like everyday I got better and better and the last 4 days of the treatment I felt completely normal and back to full speed. Those days I had zero symptoms of dizziness/lightheadedness unbalanced. How do you feel about the decadron? Did that work? I haven't been on anything since the start and have been working really hard to work through it. Somehow I've only taken 2 days off from work and had to call in sick. Some days I have no idea how I got through it. As I have 4 jobs and very busy but haven't been able to take on the normal load. I've been going to the gym pretty consistent for the last 2 months which can be really tough at times. Today I went to the gym and then after went for a 30 min run trying to force my brain to remember balance and coordination. Sorry.. Kind of blabbing but how are you now? Are you doing an any better?

Also, I've been very consistent with vitamins.. I'm taking Ginger Root, Ginko Bikoba, Fish oil, and wellness formula daily. I take a Green Drink supplement(variety of vegetables), a fruit drink supplement(variety of different fruits) every night. I take a shot of wheat grass at the gym smoothie bar about 3 days of week

Hi Terry

Your posts have been great to read.  I suffer from Vestibular neuritis.  I had my big episode September 2015 and I'm still feeling the effects.  I was doing better then started to slip a bit so I started PT.  Now I'm feelng the symptoms even more.  It's so discouraging.  Do you really think the PT helped you?  I think I took it too fast and now I'm paying the price.  I just wanted to solve my problem and I've seemed to have made it worse.  

Laurie

 

You can definitely over do the VRT.  I did and paid for it for 3 or 4 months.  I was getting better and found some exercises on YouTube and did them for too long of a session. I think that there is a combination of things that helped me to get better but, I think that time was the most important ingredient.  I tried several things so it is hard to say what helped and what didn't. Patience with this stuff goes a long way.  You can't rush the recovery and at times it seems as if it will never end.  Things got better for me but, I am 26 months in. I feel almost 100% recovered but, still have issues some days.

What all have you been doing in addition to the VRT?  Did you start with sudden onset vertigo?

I had a major vertigo episode first weekend in September 2015.  Out of the blue.  I had testing and saw an Otologist in Boston.  Dr. Rauch who is a world renowned expert on this.  He diagnosed me with Vestibular Neuritis so I'm pretty confident I have the correct diagnosis.  I've backed off the VRT today and I think I'm going to stop over this weekend and allow my brain to catch up.  Sounds so weird but don't know how else to word it.  I'm not sure if that's the right approach or not. I haven't been doing anything else.  Not sure what else to do.  Do you have suggestions? Thanks for responding back.  It's comforting to make contact with someone else that's been through this.  

Laurie 

I know exactly what you mean.  I sent you a private message.

Hi Brenda, u may already have an answer to your question, but I just read this today and wanted to tell you my story.  The severe ringing started about 3 years ago, then hearing loss in my right ear, then the dizziness.  3 years later I was diagnosed with Minere's Disease, (stage 4) according to Vanderbilt in Nashville, TN.  They perfromed an INTRATYMPANIC INJECTION in my deaf ear (busting the ear drum with a needle). This is a last resort type of procedure.  Also a neuro Dr. put me on Valium with helps with the dizziness since Antivert didn't touch my dizziness.  The ENT Dr.'s cut me down on Sodium with has all helped to improve my quality of life.  I still have some dizzinessness but not nearly as bad as before.  The ringing will always be there but "white noise" such as a fan, etc. helps.  I now have NO balance function if it is dark or I close my eyes, but it's amazing what the brain can do to compensate.  There IS help... just keep researching and talk to your doctor/s.  Good Luck and God Bless.

Hi Laurie, I'm in the Boston area too. Went to both an ENT and a neurotologist at Mass Eye and Ear. It's been just over a year since your episode, was wondering how your recovery is going.

I'm a bit of an outlier. My first attack of VN was October of last year. Apparently I had BPPV too. I gradually got better over 9 months but never completely lost the head fullness and wobblies. But was living my life and my balance was almost fully restored. Then around July 4th of this year I had another VN attack, just like the first one: vertigo, nausea, vomiting, 2 days bedridden, very slow recovery. This time I noticed my balance took much more of a hit. It's very rare to get a second attack, especially so soon after the first. As is always the case with recurring VN (as I understand it) the second attack affected my other ear.

Last week I finally went to a neurotologist and did the caloric testing and rotational chair. Turns out I now have pretty much complete loss of vestibular function in BOTH ears. Oddly, my brain seems to have compensated well. I still work, drive, exercise, walk and generally live my life. But head movements from walking or any changes in position still make me feel weird, and I'll probably always have ear fullness and a woolly feeling in my head. I generally feel a bit tipsy, like I've had too much to drink.

But when sitting still (reading, working, watching a movie) I feel completely normal. And although most people report that alcohol makes them feel worse, wine actually makes me feel more normal...within reason. It actually seems to offset my normal tipsiness, like getting tipsy in reverse.

What I can't find answers to is why I got hit in both ears within a year and now both vestibular nerves are completely shot, while other people typically have just 40-60% loss of vestibular function in just one ear, and can fully compensate and recover. I've never had an ear infection or respiratory problems...rarely even get a cold. Now I worry that the virus is still active and eating away at my inner ear, and that my hearing will go next. No one seems to have answers about the cause or progression of this disease. (I had a shingles shot about 3 years before my first attack, so I'm guessing they're not related.)

Still, I feel incredibly grateful that I have no pain, hearing loss, or anxiety, and that my brain has compensated so well...to the extent that the neurotologist at first thought I had minimal vestibular damage, and suspected brain stem issues (MRI turned out normal). I've come to terms with the fact that I'll never get back to what I was pre-VN. But I'm 63 years old, and if this is the worst thing I ever get, I'm lucky.

Hi Martha

I live in about 40 minutes north of Boston. Where are you located?  It took me a while to get diagnosed by Dr. Rauch in Boston at MA Eye & Ear with vestibular neuritis.  I’m getting very slowly better.  The progress and pace is just so slow it’s frustrating.  I’ve always been a very active person and this is tough.  I’ve tried to push through it as best I can.  I drive and work and do most things.   I get very tired by the end of the day.   It was really hard at the beginning but I’m making progress.  My sensitivity to basic head movements is much less than it was a year ago primarily due to the VRT. I haven’t had a second attack.  I’m so sorry you went through that again.  That’s awful.  I had a caloric test in Lowell done by a neurologist there.  Dr. Rauch didn’t rely on it as he said he doesn’t know the quality of the equipment or the technologist.  It did say borderline bilateral loss.  I don’t know what percentage.   I don’t have any hearing loss or pain either. Very grateful for that as well.  I did have ringing (tinnitus) but that seems to have gone away.  I would get ringing a few times a week for about 10 seconds. I think that’s progress.     I’m 51 and hopefully I’ll make more progress over the next year.  By year 2 Dr. Rauch says you’re probably as far as you’ll go.  That’s  hard to swallow.  I can watch TV and read.  At first if things moved quickly on the screen I had to avert my eyes.  I don’t have that symptom any longer.  My vision has been affected so that’s hard. Lot of strain on my eyes.  They’re doing a lot of work for me.  I don’t have balance issues unless it’s dark and my eyes are closed.  I have otherwise very good balance. Another thing I’m grateful for. 

 

I never had a lot of ear infections.  I have had a lot of sinus infections.  What I’ve read is that they think it might be the herpes virus.  The one from cold sores that somehow gets to that nerve in your ear.  That’s why I’d like to get the shingles vaccine.  My doctor said I’m too young for it.  I think I’m going to insist even though my insurance won’t pay.  I’ll pay out of pocket.  But really who knows.  I hope they figure it out soon.  I follow the progress on the VEDA site.  There is also a study at a company called Innervo Technology LLC in Columbia MO if you want to check that out.  I tried to get in the trial but found out about it too late.  They're developing a sort of "retainer" that fits to the roof of your mouth and provides electronic signals to your brain on head movement. The hope is that it will give you brain the missing signals.  Sounds promising.    

I llive in Arlington, just over the Cambridge border. I have a theory about how I got the virus in the first place. My husband gets herpes cold sores. Needless to say, we're in close contact. When I cleaned my ears, I used to moisten a Q-tip by sticking it in my mouth, and then cleaning my ears. So I may have transferred the virus somehow.

As for the shingles vaccine, I paid for it out of pocket. It seemed ridiculous to wait until I was 60 since most people get shingles between the ages of 50 and 60...and it's a nasty disease. I've become a big advocate for it.

Just out of curiousity, did you have the typical rapid onset VN, with vertigo, nausea, vomiting, etc.? Weird that some people recover in a matter of weeks, and for some people it takes much longer. I'm surprised your doctor said two years was about it for improvement. My understanding was that everyone recovers eventually. That's why I was so p*ssed when I got it again! But I think more likely it's that everyone who has only moderate loss of vestibular function can fully recover. I'm too far gone, unfortunately. I miss my balance ability. I used to be the balance queen, now I'm working on bringing it back.

Haven't heard of the VEDA site, or Innervo Technology. I'll check them both out.

If this post duplicates it’s because my comment was sent to the moderator as I included a link to the VEDA (vestibular disorders association) website so I’m trying to post my reply again.  The web site is vestibular DOT org

I live in Lowell.  I travel your way frequently out route 2 to Boston.  My daughter attends Simmons College in Boston and we travel that way.  I had the extreme onset with a sudden vertigo attack.  Severe spinning, vomiting, couldn’t stand up.  Ended up in an ambulance and the emergency room in Concord, NH.  It was awful.  That was labor day weekend 2015. Took me months to find out what was wrong. I am going to push my PCP for the shingles vaccine.  It seems to be a real possibility that is the culprit. 

My doctor told me if it happens again to go to the emergency room immediately and have them flood my system with steroids.  That will reduce the swelling around the vestibular nerve and help minimize the symptoms afterward.  That might we something you should try if it should ever occur again.

I’ve been slowly progressing with the VRT.  Have you tried the rehab?  My balance is pretty good except with my eyes closed.  I think my eyes are really taking a hit because they’re working so hard.  But the brain fog is much better than it was.  It’s just so hard to have to bring on the symptoms with head movements to stop the symptoms long term.  It’s just so crazy.  

Dr. Rauch did say 2 years.  That is kind of giving me anxiety because it's just a year away for me.  

Oy, so horrible! I spent 9 hours in the ER when I had my first attack, getting a full work-up. All normal. They thought I had BVVP at first. I've heard mixed reviews about steroids, mostly that they don't work, improvements are short-lived, and the side effects are awful.

I found some VT exercises online and do them intermittently -- more now since I get the double whammy. And I'm working on my balance. My doctor's office is supposed to contact we with a VT appointment at Mass Eye & Ear, which I'll try, but the best therapy seems to be just living my life.

Don't buy into that 2-year thing. Just keep pushing yourself! There are some real success stories out there...

Thanks Martha.   That makes me feel better.  I felt like I was in a race against time.  I really think the VRT is helping me.  It's so tough making yourself feel worse to feel better.  I would definitely try the VRT at Mass Eye and Ear.  I did it locally because traveling into Boston is so difficult.  I wish I could have done it there.  I think they have the best clinicians.  Once you're desensitized to a particular exercise move on to something else that gives you symptoms.  Crazy way to get better by making yourself sick.  It's nice to be in touch with someone local.  

VRT is definitely supposed to help. I have my first appointment later this month. It sounds like you're really making progress. What are you finding is the toughest part of having this thing? What are your worst symptoms?

For me it's not "feeling like myself", probably because of the head fullness. And that ongoing wobbly feeling because of the balance I've lost. But the more active I am and the less close work (reading, iPad, computer, etc.) I do the better I feel.

We're lucky that we live near such great medical facilities.

The "brain fog" is tough.  The spaciness and the effect on my eyes.  My close up vision is shot to hell.  Definitely not feeling like myself is hard.  But I agree that keeping active is key.  We are very lucky to be so close to Boston.  

Don't discount the benefit of steroids, even at the stage that you are at now.  I found them to be the most help for me.  In fact I am at month 31 and just had a steroid injection on Tuesday.  It always gives a positive effect for me and aided in helping me rid the foggy headed feeling in month 8 or 9.  I also disagree with the 2 year limitation on recovery.  I still see some very minor improvements over time.  My GP, after struggling for 3 or 4 weeks early on, placed me on 14 days of steriods, which was lucky.  Most in the medical field do not know that the early treatment for the condition should include steroids and posibly an anti-viral.      

How are you feeling these days? I'm in hr same boat as you!!

I see progress but very slowly getting better

It is a very slow process.  At almost 3 years I am only around 95% recovered.  Still have some bad days where it will dip below that and anxiety is sometimes hard to control.  I still have spatial sensations in some settings.

Hello,

?I read over your post and I've been having problems for several years and the anxiety seems the worst a lot of the time.  When you said the anxiety is a by-product and not something unrelated, do you mean that the anxiety can still be treated and then things like panic attacks from this inner ear mess should calm down?

Thank you.

Definitely.  Most doctors will prescribe low dose anti-depressants to get the anxiety under control, the two are definitely related.  The anxiety kicks in as a natural defense from your body's perceived inability to balance itself.  I take xanax on occasions and feel almost 100% while taking them.

It's good that an antidepressant can help. Do you know which antidepressants are best for panic caused by the inner ear? I was thinking of trying a Lexapro or Zoloft. Is there a better one for this inner ear anxiety/panic? Thank you so much for your help!

Most will start with an SSRI like Zoloft or such. An SSRI or SNRI could help.

Do you know anyone that has taken SSRIs and feel much better and no more anxiety/panic and have their dream like feelings gone away? I'm asking a lot, I'm sorry. It's just that this seems to have gotten worse for me. I don't know, but I think coming off Imipramine has brought on these horrible feelings. A few minutes I feel like I might be ok, then I'm feeling like I'm going to pass out because I feel like I'm not real or losing consciousness. Thank you.

Hi Nikki,

Hopefully you've found something that helps. After about a year of VN I went on an SSRI - sertraline - because of anxiety and panic attacks. It took a few months to get the correct dosage but it stop the panic attacks entirely and got my anxiety under control. I've been starting to taper off the drugs with no ill side effects. Having chronic vertigo is a traumatic thing and it took me too long to understand that but I wanted to let you know that it can work and you will feel better - dizziness, anxiety, panic. If you're able, seeing a therapist really help me manage the panic and anxiety in the moment and not just rely on drugs. I hope you're feeling better but know you will eventually!!

Hi, how are you doing today?

Hi Sophie, how are you? Did you joing facebook group vestibular disorders? there are many of them. Anyway, I had a caloric test reveal 33% weakness in my left inner year a few months ago and have experienced disequilibrium ever since. I just started VRT, hope it helps. How are you doing these days? Did you have a caloric test do, CT, or MRI? I hope youre improving and staying strong. 

Hi Terry, i just got this about ten weeks ago and started vrt last week. I have inner ear weakness in my left ear and causing balance issues. May I ask how you are doing today? Any advice is greatly appeciated...

Hi Laurie, i just got this about ten weeks ago and started vrt last week. I have inner ear weakness in my left ear and causing balance issues. May I ask how you are doing today? Any advice is greatly appeciated...

hi Sophie,  i just got this about ten weeks ago and started vrt last week. I have inner ear weakness in my left ear and causing balance issues. May I ask how you are doing today? 

Hi Sophia, how are you doing now? Have you tried VRT? 

Hi Terry, and everyone. New poster here. First of all, thank you all for sharing your stories and information. Knowing that others really know what I'm feeling helps! I don't have a concrete diagnosis yet, and today is the start of 6 weeks of swaying for me. I had a sudden and severe vertigo episode that sent me spinning down to the ground where I continued to spin until I was able to crawl to the toilet to vomit. 3 hours later I passed out and woke up a few hours later, no longer spinning but feeling totally crazy!  I literally felt like I was standing on a rocking boat, I felt very confused and foggy and had trouble concentrating on anything. Unfortunately, 6 weeks later I am still rocking and swaying almost all the time, often still have brain fog and frequent fullness/popping in my ears.

Initially, in the second week,  I went and saw a GP who said it was a bad allergy attack causing vertigo. She put me on allergy pills, 1 week of prednisone and Flonase. The following week I went back to her as my ears were popping like crazy, my hearing had become muffled and had slight ear aches, I was still rocking and swaying constantly and occasionally feeling sick to my stomach. The GP still said it was allergies, but put me on 10 days of antibiotics in case there was an infection and said there was a bit of fluid in my right ear, she also suggested meclazine. At this point she mentioned I might need Vestibular Rehab to help with the dizziness, so she signed me up for it. The following week I was not feeling any better, in fact worse because by then the anxiety had kicked in and I was panicking that I might feel like this forever, also, each time I would panic and end up crying, the swaying and rocking would intensify. I went to the ER.

ER doc did a CT scan blood workup. CT was normal, as was blood, with no vitamin issues. ER doc said I needed to follow up with my doc and demand an ENT appointment. She said she couldn't diagnose me (leave that to ENT?) but from my symptoms and how long it's lasted more than likely it would turn out to be Labrynthitis or Vestibular Neuritis. She said either way, the VRT would help. She gave me a few days off work, said to get lots of rest. She also gave me more meclazine and valium to take at night for a few days. Within 4 days I was feeling almost normal at one point, but that lasted only about half a day.

So at this time, now 6 weeks in, I am not taking any medication for this other than gingko biloba and eating ginger daily. I have cut back on salt, and switched to half-caff coffee, and increased my water intake. I don't smoke or drink.  I have been to 2 VRT appointments and therapist agrees, probably VN. I do have Degenerative Disk Disease (for the past 7 years now) in my cervical spine and therapist said the muscles and movement in my cervical spine feel too loose and something about that could be adding pressure to the nerves, sending increased pressure to the vestibular nerve. Does that make sense to anyone here, or can you relate? PT has me doing the VRT for 2 mins at a time, 4 times a day, plus a 20 min walk outdoors, along with neck stretches to gain strength. I do feel it's helping some, but I still feel like a total mess!!  I am 36, I feel I am too young for this!! I am an insurance admin for work and I sit behind a computer for 8.5 hours a day. I can wake up feeling great in the morning, get myself ready, drive 45 miles to work (feeling fine) and then bam! I sit down in front of the computer and it hits me. I am instantly back on the rocking/swaying boat and it continues all day long, until I start my drive home. It starts again at home, once I sit down to relax for the evening.

There have been about 4 or 5 days thru this that by 8 pm I am so exhausted and fatigued that I can no longer form complete sentences. The brain fog is so thick and my emotions are just wrecked. I try to stay positive and know that will help, but some days it's just not possible. Also, I've noticed that when the weather is gloomy and moist, the swaying is more intense.  I see the ENT June 15th and am hoping he can provide some answers. I also have an MRI scheduled soon. I also wanted to mention I keep hearing the fastest way to recovery is to push yourself, and not to baby the condition. I am pushing!! I do my VRT daily, my walking, I drive, I go to stores and work, and I try to socialize as much and as normally as possible. 

Thank you all for taking the time to read my story. Please provide any suggestions you can. Health, and recovery wishes to you all! 

It is a dreadful illness and one that few understand, unless you have experienced it first hand.  You are doing the things that I would recommend and that I did during my recovery.  I had my attack a little over 4 years ago and recovered to the pont of where I feel is 95% or so.  Time is a big factor but, the VRT will help as well.  Unfortunately, it will not go as quickly as it appeared.  Someone on this forum gave me some valuable feedback almost 4 years ago and I found it to be so true.  Recovery from this is measured in weeks and months, not days.  Weather still bothers me to this day.  When the barometric pressure falls I will have issues because my inner ear cannot adapt to the change as quickly as it needs to.  It can take 2 or 3 days to adjust and by that time, it usually is going back up and my inner ear has to adjust again.

The VRT will take 3 to 6 months to have a full affect.  Don't press or over do thinking that it willl help move the recovery faster because it won't.  In fact it can prolong recovery. Most people recover from VN or LABS in 12 to 14 weeks with a little residual issues for up to a year.  Some of us unlucky ones have some ongoing issues but, you will get better.  Don't lose hope. 

Thanks for the quick reply! Having forums like this and the vestibular disorder support group on FB have been a big help. My husband, friends and co-workers believe what I am saying about this condition, but they don't really understand what it feels like and how long the days are with this. I also don't think they understand how lonely it can make you feel. 

So happy to hear you are 95% recovered! I hope the other 5% comes to you. I understand measuring the recovery in weeks/months and not days. Early on I was judging the days and it was very discouraging. Now I think back to where I was at week 3, vs. week 6 and can see the improvements. They are slight, but they are improvements and that's in a 3 week timeframe. I'll take it! 

Try Ativan (Lorazepam), start with 1/2 of 0.5mg pill twice a day. You can always increase it. Valium doesn't work for this condition. Read my comment (few minutes earlier) when they publish it.

 

Well, I don't see my "large" comment  posted. Sad, sad, bad... I referred to many doctors, scientists who know what they are doing.

One more thing to add to that "large"  comment- have your eyes checked. Not a regular exam, but like one they do at Vision Specialists of Michigan. Maybe for some of you prism glasses is all you need. Binocular Vision Dysfunction is rampant.  It messes up your brain.

What bout prochlorperazine maleate 5mg i take 1 three times a day stop nausea aswell pretty good

I feel real confident nw ive had it for 10 weeks now the dizzy spells are minimal nw i cn drive concentrate more lost lot of weight in 10 weeks 5 kg wow jus having slight migraines and lite headed cant wait till it dissapears wana return back to normal duties and life.

Hi Terry

I see this post is from a couple of years but I wanted to see how everyone is doing. I'm going to tell you my story and maybe you can help me as I'm in a lost with all this. About a month ago I started feeling off blanced and dizzy and like my head was in a cloud with to the doctors they said maybe I had infection so they gave antibiotics about two weeks into it I got my blance back and was basically back to normal I started my period the next month and it came back but this time a little worse I went back to the doctor and they did a vng test a caloric test where they found 35 percent damage to the blance system in my left ear ever since my test my systomps have gotten worse I can barley walk now and when i look at iteams they seem like they are moving around me slowly my head feels like it's not in my body anymore idk if the test can make it worse but it seems that way I'm starting physical therapy next this week but I'm getting scared because my symptoms are way worse than they were before the test I had the test done three days ago I am not on any medication just multi vitamins although when this started again they gave me antibiotics but I stopped because it didnt seem to be helping also I'm thinking of going on anti deportsaant but I read it can damage the system even more due to otocity can you please give me advise I'm very scared I will just keep getting worse and not better

Thank you jenny

dear tracy

i hope you are doing well

last july i was diagnosed with vestibularvneurtitis and since then i feel really exhausted and dizzy when ever i move my head

i am in physio therapy since 4 weeks now and the recovery is really slow

it this normal? i am losing hope and feel depressed over this

specially i am working and caring for two children

haya

hi haya

i am not tracey but wanted to reach out because i had been misdiagnosed with BPPV then vestibular nueritis. i am now correctly diagnosed with vestibular migraines and have gotten my life back. i too thought i was going to lose my job and be disabled. i was properly diagnosed by an otolaryngologist. the ENTs and Nuerologists dont know much about these things. i highly recommend finding an otolaryngologist. have you had any testing on your ears and vestibular system yet? neither the ENT nor the neurologist ordered these tests for me. i went 3 months being misdiagnosed and probably would have been longer had i not started researching online and found vestibular migraines. you dont need the pain of a headache so this can get overlooked. look up on webmd.com and see if the symptoms match you. i had every single symptom including a numb hand. that is the aura. i have a child too and couldnt take care of myself or spend any quality time with her. i am on medication now and have gotten my life and my brain back. just wanted to encourage you not to just accept the VN diagnosis and to encourage you to see an otolaryngologist. good luck

Yes, the recovery process is really slow. It takes vestibular rehabilitation 3 months to be successful in helping to relieve the symptoms. There are other issues/conditions that can cause the same symptoms so it is important that the diagnosis is correct. Recovery can take up to a year if if is in fact vestibular neuritis (VN). When you say that you are dizzy, is it a spinning dizzy, vertigo, or just an off balance spatial type feeling?

You have to work hard to recover what has been impacted by VN and you need to be careful not to over do things thereby creating more issues. It can certainly be a challenge with just doing day to day tasks and especially caring for children and working. What were your initial symptoms and what were you treated with in the way of medication? Are you still taking any medications? What type doctor are you seeing? An Oto-neurologist or Neuro-Otologist is the best doctor for treatment of VN. Who diagnosed your condition (what type doctor)?

Recovery from this condition is measured in weeks and months, unfortunately. It will get better, though.

thanks dear for this lovely post it come in a needy time .

my story is after my travel in july i was hit with this vertigo feeling like i am in a boat it was extereme that i could nt move and need a wheelchair for the trip to the er

after that i went to a specialist in balance and inner ear doctor

she did some test and my diagnosis is vestibular neurtitis

the problem is that she said i am young and it will heal by it self ( i am 33 yrs not so young )

strangely my symptoms lasted for a month and i syptoms free all augest and september

thank one night i woke up with sever neck pain and bang the vertigo came back

this time the episode is less severe but it is there always there

i am depressed cause i could not function. my job depends on telephone and computers and soical media so it feels always worse when i handle simple task. after a month i went for a vestibular rehab center and my symptoms is much improved . my doctor refered me to a sychiatric doctor since i am always anxious and depressed due to the illness . today i feel much better than a month ago at least i could move and walk. thanks alot for your reply and your comment it means the world for me specially that i am started to feel crazy and no one believe me

You are not crazy. The simple truth is that if someone has never experienced this condition they cannot relate nor understand how you feel. The condition definitely makes you anxious and feeling like there is no hope of recovery makes you depressed. So many people get pushed off as having anxiety and the real issues never get treated.

Glad to hear that you are feeing and doing better. Never give up hope of a better tomorrow. While you are in the pits of the symptoms always know that it will get better with time.

hi dear

i hope your feeling well

i took your advise and went to an ent doctor who gave me a different diagnosis

he said i am having vestibular migrains since i do have two attacks of vertigo

one in july and took 3 weeks to heal

the other in september where i woke up with neck spasm and vertigo

i am still worried and hopeful that this is the accurate diagnosis

i wonder why balance specialist didnt mention vestibular migrains at all

the doctor said that vestibular neuritis could come back as a second attack of vertigo

i am currently confused

Hello,

May I ask, have you had vestibular testing too? If you did, did it show anything?

Like vestibular damage?

i have done the following test

audio test - normal

ear pressure test - normal

posturography done is july show inner ear problem

vng test

with both posturography and vng tests the doctor diagnose me with vesitbular neurtitis

than on augest and september i was free of sypmtoms

than on late september i woke up with neck spasm and vertigo

i had mixed diagnosis between vestibular neurtitis and vestibular migraine

i will give my self a month than i am planning to fly abroad to do further tests since in my country dont have balance clinic

i wanted to do caloric test and rotary chair as well

hi haya

did they prescribe medication to you for vestibular migraines? they should have. your brain needs to be reset. no one mentioned this to me during my misery. 2misdiagnosis, 2 hospitilzations, i read it here on this forum. and realized it was me. had i not, i dont know where i would be. i am on norotriptiline. it has saved me. i was diagnosed with vestibular nueritis, i never had it. i had all the testing which cleared me of it. you probably dont either. so focus on the vestibular migraines and taking the medication to straighten you out. its not forever, just until all your symptoms are gone.

hi dear

thansk alot for the information

i travelled for a balance clinic to see a doctor there

i need to do few tests to rule things out since in my second attack no test was done to me

and than i shall have a full diagnosis

i am on propanolol for a week plus amit both of them strong meds and i was constantly depressed and lie down tired

my doctor advised me to stop the meds so the can prefrom the test accuretly with accurate results than only i will have a diagnosis

Tambralyn12, I had a vertigo attack on April 12 of this year, and the doctors think it is VN. Interestingly, I am also battling some neck pain, which turned out to be a cervical osteophyte (bone spur). I have read several articles about patients with this problem having a Radiofrequency Ablation (RFA), and that seems to take care of a lot of the dizziness! I am scheduled for an ablation, and will let you know the outcome.