Vertigo / Dizziness :: Suffering From Vestibular Neuritis
Mar 6, 2016
Mine started with buzzing in my left ear, flickering in the left eye. I've had numerous exercises which worked at first but not any more. I feel like I'm walking on sponges and had went to see a physio and she is referring me to a specialist in Birmingham. She said it's the signals in my brain and a lot of things going on. Apparently its trying to compensate for my weak balance system. No one can give me a definite answer and its been going on for 7 years now! Anyone else out there who can relate?
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Back in February I experienced an odd episode while driving down a bright highway where the light flashed between the trees constantly. I started seeing aura and it developed into a major migraine (I've had a handful of migraines in my lifetime only, not chronic ones- I've also been chronically congested for about 2-3 years). It seemed like after this that I started having headaches mostly on the left side of my head based mostly around the ear and neck area. My vision blurred and then fixed itself, but then I started having this odd sensation while driving, like my eyes didn't know where to focus. My head was really foggy like I couldn't think, and when I shook it it almost felt sloshy,like my brain was sloshing in a fish bowl. The dizziness then began to get worse while looking at any type of technology or tv. The headaches weren't that bad (except for that first one in February), but my anxiety quickly took over. I had an MRI without contrast just before Easter,and it was fine. At this point they made me appointments with a neurologist, but not until April 28. The more I started researching, I also made appts with an ENT on April 27. I was miserable for about 3 weeks, until my antidepressant began to calm me down. AT this point I could watch TV and look at a computer again, as well as drive, but was still plagued with this disequilibrium. On another of my ER visits, the doctor said my neck was extremely stiff and to do PT or chiropractor. I went to PT and she asked if I'd had any illnesses around the time this started. I'd had a very bad sinus infection and was put on 12 days of steroids, and it was about 2-3 weeks later that all this started. She mentioned Vestibular Neuritis, and I've been doing the vestibular PT ever since April 1.
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Fast forward to now, my disequilibrium is somewhat better, but not 100%. I still feel funny when driving or riding in the car, and I'm terrified to go on any amusement park rides with my family. I finally saw the ENT last week, with the hopes that she'd be the missing piece. Well, she said she bet it was migraines and told me to go to the neuro. She did however, scope my sinuses and they were extremely swollen and told me to use saline and a steroid nose spray daily or I'd be needing surgery in 10 years. I went and bought the sprays, but was really sad after hearing the 4th person tell me this was migraines when I feel like this isn't. The next day I saw the Neurologist expecting to hear the same thing, but she told me she thought it was my sinuses. She wants me to continue the nose sprays and come back in 2 weeks, as well as continue the vestibular PT. I asked her about the Vestibular Neuritis, and she said people have extreme vertigo with it, and I haven't had that.
My question is those of you who have been diagnosed with VN, was your dizziness vertigo? Or did some of you just have a feeling of disequilibrium,like not knowing what to look at? Also, how long has it taken you to regain 100% function? I'm going on week 12 of this, and am starting to doubt if I'll ever be back to 100%.
I've been dealing with a VN diagnosis since Christmas. I've had blood work and a MRI, met with an ENT and a neurologist. Everything came back normal. I started twice weekly acupuncture in January and have since reduced that to once every two weeks. I did VRT exercises for several months. I am getting better. I highly recommend anyone suffering with VN to get acupuncture! I'm pretty sure it saved me.
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That being said, I still have good times and not so good times (no longer called bad times. For the last few days I've been feeling more dizzy and this morning I woke up with a heavy feeling in my stomach/chest area. It almost felt as though my torso was numb. I regained feeling a few minutes after getting up. I've had a lot of chest/stomach area related feelings with my VN. Has anyone else had this? I'm wondering if my doctors missed something.
I had Labs but it was kindly pointed out it may be VN as I didn't experience hearing loss. Anyway, I am nearly on week 5 of it now but I am a lot better. I'm not dizzy anymore but when I wake in the morning I feel quite unsteady on my feet. As the day progresses I am doing a lot better but once it's the evening I feel quite sluggish and nauseous. I can only stomach one meal a day and that's lunch. I feel way too sick to eat dinner. I am also still dealing with anxiety, mostly when I'm driving and I'm stuck at traffic lights. I think it's because I had a bad panic attack at the lights when my VN first started, and now I have in the back of my mind that if I have another panic attack at the lights I'm stuck! I am back at work, and I can do most things ok. I find supermarkets a bit tough, and loud busy places but I'm working thru it. I have a doctors appointment on Wednesday as my GP had spoken about referring me on for balance therapy. My question is, can these sorts of "after effects" be quite common? Can they take awhile to completely disappear? Is there anyone else who also had anxiety with VN, but found it went away once they were 100%? I'm so grateful I'm no longer dizzy but I just wish I were 100% again! What's the typical time frame for VN? Sorry for all the questions, I felt quite alone until I found this site.
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Has anybody ever had a VN relapse as it seems i have after a year is it possible or have i just picked up another virus?
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Condition: Most likely labyrinthitis (In my 7th week now)
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2 months ago at uni when I was in the gym, I was exerting myself doing weights and felt something pop in my left ear. I felt really faint and headed back...over the next few days I had severe vertigo/dizziness/nausea. I also experienced my first anxiety/panic attack when i felt these symptoms, which to be honest felt worse than the actual symptoms. I went to the uni GP and she said I had labyrinthitis (though she did no tests). I also recall not having any flu like symptoms so I'm not sure how it could be viral labyrinthitis. Thankfully all symptoms vanished within 1 week.
Life was back to normal. However 3 weeks later, I was back home for the summer and had been back in the gym for a week or 2 when I felt really lightheaded and faint again. Sometimes I feel like this in the gym when I exert myself so didn't think much of it. I came home however and experienced another anxiety attack. The dizziness/vertigo etc was MUCH LESS severe than the initial attack 3 weeks ago at uni, however it has persisted for coming up to 7 WEEKS now.
Over the past 7 weeks, I have had good days and bad days...good hours and bad hours. I went to the local GP who once again said the symptoms matched labyrinthitis without doing any tests. He prescribed some stemetil (which I took only twice as it didn't help and also because I have read everywhere online that it only slows down the recovery from labyrinthitis).
I tried just walking around, passing the ball about with a friend to 'retrain' my brain. However, the symptoms were still in the background and didn't really seem to disappear. But I did feel much better then than I do now.
For the past week, everything seems to have gotten worse. I have spent more time in bed than normal as my friends are on holiday at the moment and I'm not sure if this is the cause? As I'm no longer carrying on with things as normal.
Since day 1, I have also had a popping sensation in my left ear every time I swallow.
Head feels heavy. Neck aches. Feel a pressure within my head/ear.
Though I have had anxiety attacks a few times, lately it feels like I'm on the verge of one all the time.
I also have other normal symptoms such as feeling nauseous, tiredness etc.
Very recently, it feels like my vision is a part of the problem too. My eyes feel very heavy and like I cant focus on things. Also, the last few days, I see little flashes of lights which aren't actually there (this has only happened about 3 times in as many days)
Note: I have finally managed to get a specialist ENT appointment, which isnt for another 5 weeks unfortunately, but better than nothing. I'm sure at that point, they will confirm it to be labyrinthitis or something similar as the symptoms all match.
Is there anyone else in a similar situation as me? How are you dealing with it?
I have done some generic VRT exercises, but it doesn't seem to help too much. Thoughts about VRT?
What triggers your symptoms? For me it's been hot weather, shower, loud noises, bright lights, dim lights and more (nothing specific).
My anxiety seems to be triggered by anything that I think is abnormal, e.g. sudden tingling somewhere on my body, sudden temporary noise in my ears, sudden temporary dizziness etc etc. All of which is probably normal, but they seem to trigger anxiety when I feel like this. Does this also happen to anyone else?
Are there any tips to control the anxiety? I swear its a lot worse than actual dizziness.
Are there any tips to control the dizziness? Such as VRT or others. Is it better to stay active and feel worse for a short while or should I just stay in bed?
Any other useful information?
WILL THIS EVER END?? I have read some success stories, but will it really take months to years??
Is it also true that even if it goes away, it can come back any time in the future? This is what scares me the most as it seems there is no permanent cure.
5 weeks ago mid morning my head started spinning violently I had no balance and was sick. I felt hot but had a cold sweat .my wife called an ambulance and was taken to a&e . blood tests showed serious infection so was admitted and put on antibiotic drip and oral anti sickness and anti vertigo pills . 2 days later the sickness was much better and the vertigo better as long as I did not move my head .however I still felt very lightheaded and had no balance so stayed in hospital . 4 days on no change so I had mri brain scan which showed nothing . next day i saw ent and doc diagnosed viral vestibular neuritis . further blood tests showed infection clear so I was discharged and told to do the head moving exercises I had been shown .5 weeks on nothing has improved I cannot drive play golf and feel like I am drunk when trying to walk .how long can this last I feel I am not living but just existing.
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It all started when I had a 'funny turn' at work back in November 2013. I'll never forget that day as I haven't felt the same since. I thought I was having a panic attack as I just felt wrong. Strange not really here sort of panicky feeling so I went home and went to bed. I woke up to an even worse fuzzy vision panic feeling and had to lie on the floor while calling nhs emergency number as I didn't have a clue what was happening to me. I calmed down eventually and made my first visit to the doctors who said it was a panic attack and prescribed diazepam. At the time I didn't want to take medication as I felt so unusual. I knew something wasn't quite right. I continued feeling extremely anxious panicky and off balance for weeks on end along with continuous tearful visits to the doctors explaining that my vision was disturbed and my eyes were flickering along with pressure inside my ears. Eventually after about 8 weeks of hell I got an appointment with a balance clinic who did testing and confirmed right ear damage and confirmed vestibular neuritis. I am just posting to see if anyone has experienced the same symptoms as me as when I read posts about VN it seems that I can never find the same symptoms as mine which scares me to death ) : here goes: - I can't think straight, avoid people because I feel I can't hold a conversation because I'm sort of panicky and don't feel like the old me, I have moments of real panic that come out of the blue because I just don't feel right, very small things stress me out like even just someone at the door! I know it sounds silly but I'm just a panicked mess having to put on a front to everyone. The worse symptom at the minute which has gone on for a long while is a pressure in my chest/back that doesn't go. I've read somewhere it's muscle strain due to my balance but I just don't know what to believe anymore. My thoughts are just different since I've had this, I don't know where my old personality has gone. It's like I'm hyper aware that I'm not right. Anyone's advice would be much appreciated, I've had this since November 2013 and I am doing gaze stability exercises 5 times a day. I'm having good and bad times but generally feel a nervous wreck. It's so draining. Alcohol doesn't even relax me anymore, it just makes me more lightheaded and panicky. Sorry for such a long moany post but no one can understand why I have been so weird for months.
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Hi All, I've been diagnosed on April 20th. It was hell for 3 weeks... then I started Vestibular Therapy and acupuncture. I have also increased my Vitamins and started talking to someone about the anxiety related to the ongoing symptoms that is caused from the Vestibular weakness... we'll I have improved! It's a very slow road but if you told me a month ago today that I would go out for a 2 mile walk I would have thought you were crazy. Well I did, today and it felt great. Yes the last half mile I felt off but after coming home to relax it passed. I've be decided that the dizzy and the anxiety will not control me any longer. I'm taking control of my life. I guess this post is for all who are giving up hope like I felt not too long ago. I still have a ways to go..I haven't seen my friends yet and haven't gone back to work yet but that will come in a few weeks. A Lot of it is mind over matter. And when I feel off and dizzy I talk to it...and do meditation. MEDITATION does work! !! So basically just do whatever you can to get by... eat better and drink water. I know VN is hell and the Vestibular weakness that comes with it. JUST DON'T GIVE UP!
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I had a stroke in cochlea vestibular nerve August 2013 causing me total deafness in left ear and balance problems. Doctors cannot tell me why it happened. I had rehab, went home felt ok but reality hit when I started to resume the normal activities of life. Live with continual pressure in head, finding difficult in shopping centres, moving my head or turning quickly .I have had mri's, infrared video goggles, test for BPPV - do not have that - thank goodness. Find Difficult travelling in car, going over bumps. I can still drive. I still work as my job is sitting mainly. The most difficult thing is, as I look well my family do not take my condition seriously and I am really struggling with that and have bouts of depression and stress and anxiety make my head much worse..
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went on a cruise over a mo. ago still having vertigo. Doc thinks it is Vestibular Neuritis. Any input? I had never cruised before.
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A year ago I fell extremely ill - I was fine the one day and the next I woke up with an extreme feeling of drunkenness, disorientation and fatigue. For the first few weeks I struggled to do anything - read, walk, drive, understand lectures (I am a student).
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I went to a bunch of GPs in my area and none of them had any idea. eventually after about 4 months of feeling like this a doctor diagnosed me with "chronic fatigue syndrome" and that with rest and the right nutritional changes it should clear up in the next few months.
Fast forward 7 months and I still have this incredibly debilitating brain fog. I decided that CFS can't be correct cause I was extremely diligent and had no improvement whatsoever. I ended up seeing an ENT and he diagnosed vestibular neuritis.
Reading through the forums, many of my symptoms overlap - confusion, "brain fog", difficulty in stores and busy places, difficulty reading, problems with spacial awareness, cognitive problems, improvement of symptoms from morning to evening, fatigue, depression and anxiety.
However, at no point during the acute phase or the chronic phase of the illness have I ever felt "dizziness". The rooms has never spun, I've never fallen over, my balance seems fine. All of these being defining features of VN.
Is it possible to have VN without the dizziness? Am I perhaps misinterpreting what is meant by "dizziness" in the context of VN? My understanding of dizziness is the feeling you get when as a child you spun around in circles until the ground started to wobble and the world spin. I have never felt this during my illness.
I have just started VRT and it doesn't seem to have helped so far - I've been doing it for a week and I understand that it may be months before we have any noticeable improvement. I also just had a tonsillectomy and my symptoms deteriorated significantly postoperative.
Has anyone else ever experienced anything like this? Does this sound like just VN or could there be something else going on?
(I've had an MRI, Autoimmune screen, pretty much every blood test, hearing tests, CT scans - all of which came back fine)
How long has VRT taken to make a difference for you?
Diagnosed with VN with possible MAV in March 2015 and have progressed very very slowly, Life was liveable but not always great as still woke up in mornings with what can only be described as a hangover feeling which subsided as the day went on.
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Suffered from what can be described as a feeling of a tight band running from my forehead across my head to the base of my neck but i just tried ti ignore it, however in the last few weeks i have stiff neck tingling nose and a head that feels totally full .........its like i have gone back 8 months and now i'm wondering if i have a problem in my neck as its always worse in the mornings anybody else struggle in the mornings with this?
I have a serious health issue, but the doctors haven't been able to pinpoint what it is. Basically, I've had six weeks of dizziness and unsteadiness. It sounds like Vestibular Neuritis, but please let me know what you think.
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On June 9th I got some kind of stomach flu or food poisoning. I had severe vomiting and diarrhea. Other than a canker sore under my tongue, I was starting to feel better. I was exercising again and working again.
While walking across a bridge in the park on June 14th, I suddenly got a fear of heights. I felt the same sensation the next day while sitting at a traffic light, that happens to be on top of an overpass. I felt panicky
As the week went on, I was getting panicky in the car every time I had to stop at a light. I had to look down at the steering wheel because the cars criss-crossing in front of me was making me disoriented.
Then I began to get dizzy spells throughout the day, plus I felt a permanent unsteadiness 24 hours a day. A lot of times I had to concentrate hard to walk. My eyes were not going where I wanted them to go. Work really brought on the systems. I started missing days. I also had to have people drive me around to places. One time I had heart palpitations when there were a lot of people around me. Eventually I asked for a leave of absence.
On the 26th, a dizzy spell got so bad I had to go to the hospital. It was mainly disorientation, not like the room was spinning. I was still able to walk around the hospital, but very slowly, and had to concentrate hard to do it. MRI showed no tumors or stroke. They said it was a middle ear issue, prescribe some medicine and sent me on my way.
So far I've seen one ENT, but other appts are coming for neurologist and another ENT. My hearing test was perfect. The ENG/caloric test came out normal, which surprised me. He suggested I might have Mal de Debarquement Syndrome.
I became became imprisoned in my home, and I started to feel physically weak as the days went on. After learning about vestibular exercises on the Internet, I decided to start doing them on my own. They seem to have helped with my balance and with my eye-darting issues. I now go for very long walks. I am starting to drive again too. However, everything feels totally different than it did before this all began.
There were a couple of nights where my brain was doing odd things. I got hot flashes (even though I'm a guy) and heart palpitations in the middle of the night one time.
My persistent systems right now are:
-susceptible to dizziness when on the computer, watching TV, doing quick head turns, being inside stores
-high-pitch ringing in my left ear
-fullness in my right ears that comes and goes, almost like there is fluid in them
-harder to concentrate
-unsteadiness as I move. Sometimes it's a "bobble"; other times it's like I'm leaning in one direction or another. Sometimes it's almost normal.
-sensitivity to sound, like the bath water running
-misidentification of sounds. I sometimes think the garbage truck is outside, only to figure out it's our air conditioner.
Let me know what you think. I would like to begin living a normal life again: return to work, use a computer and watch TV normally, be able to drive long distances without worry. I'm thinking it's VN, but I did not have an "acute" spinning phase, plus the caloric test was normal. The canker sore may be relevant because I've read that the herpes virus can attack the nerve.
Went to vestibular therapy today. He said my right eye doesn't focus very well. And it's all connected ears eyes etc. So I have to keep up the exercises his given me. He has high hopes that I'm gonna get better and I'm gonna keep positive. Good luck to those who thinking about doing vestibular therapy.
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2 years ago I had gotten a bad ear infection after a trip to Disney from pool is what doctors believe. It was misdiagnosed at first so it severely damaged my vestibular nerve on my left side with 80% weakness. Of course this was all found out after the slew of mri's, mra's, various vestibular testing, color/hot water in ears etc. 6 months of testing and 2 rounds of vestibular therapy have not helped me at all. I am on my 4th
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specialist in NYC who finally put me on acetazolamide for the sick side effects of nausea and brain fog. 6 months into these pills and now my body is starting to become accustomed to them and are not working so well. My symptoms are
1) Overall unsteadiness and dizziness (fall to the left)
I work in NYC so my commute walking is the worst, shopping too.
2) Brain Fog - how else to explain this just a horrible feeling in my head
constantly that very rarely feels better.
3) Nausea (without the pills I could just be laying in my bed and fell like
I am going to throw up)
4) Disgust and Depression over this whole mess I am only 51.
I am told by many doctors 95% of people recover, right side compensates for the left side over time. This has not happened at all. I also have never heard of anyone having it constantly for this long. Can someone at least tell me they are the same?
Does anyone know if it is possible to over do the vestibular rehabilitation training for vestibular neuritis recovery?
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I have mild vestibular neuritis and was prescribed, by a balance physiotherapist, a vestibular rehabilitation training program. This developed 13 months ago, and with the VRT, it did clear up. The symptoms came back recently and I've started VRT again. This time I'm having trouble recovering.
I do an intense program of 6-7 different exercises, 5 times per day, plus 40 minutes of walking or running per day. I do this everyday of the week without days off. Could I be over training and not allowing the brain to compensate?
On nov 10th I was in Penn station in NYC with my 3.5 year old daughter and aunt and just had a wonderful day in NYC. I bent down to grab something from the stroller before boarding the train and when I stood up I felt like I was going to pass out and that my brain was floating and I was moving. My aunt freaked out and said we have to get on the train. We did and the spinning and horrible sensation of movement continued along with the train my brain was in overdrive. I then had a panic attack all hoping to just make it to the stop so we could get off the train. I had suffered a panic attack years before so I thought maybe this is some sort of panic disorder?? Got off the train and drove home still didn't feel right. The next morning I went to my dr and he said I had vertigo it would be for 2 weeks and gave me antivert to take. I had blood taken which all came back normal. I should preface that I had been to the dr the week before complaining of dizziness but it was attributed to a sinus infection he thought I had since I was starting to have a sore throat. I took levaquin an antibiotic 3 days before the incident in penn station. I know now for a fact that I was suffering from vestibular neuritis probably prior to the incident in penn station. I had gotten off an elliptical bike and felt very dizzy and heart racing but I attributed it to not cooling down. I also had about a week prior to the main incident a light headed feeling and chills each time I was eating. For me eating at the beginning would trigger a lot of feeling I was moving.
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Well I took the antivert meds and tried to take care of my daughter since I'm a stay at home mom. Trying to stay awake on antivert was the worst thing I did and it put me into a severe depression like state. I have a mother who suffers from depression and I felt like I was in a hole I couldn't get out of. I called my dr and asked if I could have a perscription for xanax anything I felt like I was in a constant state of anxiety and panic along with the constant movement and unbalance and stress of what I was going to do to take care of my daughter. I finally decided to the ER where they finally gave me valium which def helped to calm me down and understand that this is a virus and not an anxiety disorder. I went to my ENT and got the vestibular neuritis. My ent told me he had suffered from a bout of this years ago and everything I was feeling was normal the panic the anxiety and was disappointed I had to go to the ER to obtain something to help me. He prescribed valium which I took at night the first 10 days. I was able to get a nanny for my daughter. I'm in week 4 and each day is different. I came down with a cold during week 3 which I think set things off again. I'm getting better from the cold. I suffer from TMJ and think it's made it hard because a lot of times before this illness I would wake up with a horrible headache from teeth grinding.
The mornings are the worst for me. I'm sensitive to light and feel very lightheaded and very out of it. The coughing has made my back and neck very sore. I just each morning hope I won't have the feeling of floating and just want to feel in control again.
I haven't driven since this happened. I haven't been able to take care of my daughter which is the worst of all.
I need advice on how to get back on my feet again I feel good some parts of the day and other parts I feel like I'm floating. I have been out of the house only a few times in 4 weeks. Always with my husband or a friend. This past Sunday we went out and I felt pretty good but I'm really afraid about going out alone.
My wife has had acute vestibular failure/vestibular neuritis/neuronitis for the last 13 weeks and wants to have the flu vaccination but is apprehensive in case it makes her illness worse. So, is it safe to be vaccinated? She is so ill with the vertigo etcetera and feels that a dose of flu would finish her off. She has asked her GP who says it is OK but the GP doesn't seem to know much about this illness.
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Anyone have luck with acupuncture for vestibular neuritis ?
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So I'm just about three years out from my initial attack. These days I feel great I've compensated, but here and there I'll have a dizzy moment. Next week my husband and I are flying with our three children to the west coast. I'm getting nervous and I'm having anxiety because I honestly do not know what to expect since this will be my first time flying with a vestibular problem. I certainly want to avoid being dizzy if possible. Any tips? Personal experience with flying? I asked my ENT, about flying after this he said people aren't bothered.
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