Vertigo / Dizziness :: Diagnosed Viral Vestibular Neuritis
May 24, 2014
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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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.
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%.
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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.
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.
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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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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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Condition: Most likely labyrinthitis (In my 7th week now)
Background info:
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.
Currently:
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.
Other info:
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.
Questions:
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.
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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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About 3 months ago (Nov 1). I woke up one morning and did not feel dizzy but definitely off. Groggy, lightheaded, wonky I guess you could say. I can describe it like how it would look if you were standing at the top of a tall building. Things just looked foggy to me. It scared the hell out of me. I waited about 2 weeks because I thought I was just tired. It wasn't going away so I went to the emergency room and the first thing he did was check my ear and told me it was red and inflamed which is causing me to feel wonky. He said it was a mild Vestibular Neuritis. He said it's just viral and it will go away on it's own. Well, I have gone to my family doctor about 5 times since then JUST to have her check in my ear. It's now February and she still sees that it is red and inflamed. She said she doesn't want to just throw antibiotics at it because it DEFINITELY is NOT an infections and that it is viral. She said she also does not want to prescribe dizzy meds because if the room is not spinning then she doesn't want me to take them. I feel like I'd rather feel dizzy than feel this!!! How long does this "viral" crap last???? I have not felt ANY improvement since it started. Unless I am just used to feeling this way so it doesn't seem as scary anymore?? The only way I can describe it is that I am the most tired I have EVER been in my life. (gone for TONS of bloodwork and I am totally fine everywhere). SO just super tired and I have MASSIVE sensitivity to certain lights. I work under one at work and maintenance had to come in and dim the light for me. It's so frustrating because people look at me and automatically know that something is wrong with me because they see I am trying to focus on their faces. It's been like 4 months and I can't even deal with this anymore. My doctor seems as if she is fed up with me which I hate because I obviously wouldn't be going there if there weren't a problem. Last time I went she said the ear was still red and that she was going to send me to an ENT specialist. I have been waiting SO long for this appointment and it is finally on March 3. I just have the strongest feeling they are going to send me away AGAIN saying I need an MRI and then I have to wait even LONGER. My husband and I want to try and have a baby and we have totally put our lives on hold because I don't want to be pregnant and not being able to go for these tests that you can't go to when pregnant. I just want answers. I'm so upset. I know it's not vertigo because things aren't spinning. It's so hard to describe I'm just so tired and have a foggy head and sometimes that same ear aches and even that side of my head aches too. And forget being under certain lights. Does anybody know what I am talking about?? Please help me. I'm so nervous about going to this END as well because I don't want them finding anything super serious. I am so scared from all of this and I just wish I could get some answers. Will the ENT confirm that it is in fact VN? My doctor hasn't confirmed that. She just keeps saying "it's red and it's viral." I am so fed up and so sick and tired of feeling tired and foggy and wonky.
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Long story short I went to urgent care about 5 months ago because I was feeling lightheaded and disoriented. The NP told me I had an inner ear infection and gave me meds.
About 4 days later my symptoms had not improved and I went to the ER. They ran tons of tests and all were clear, then told me they also thought it an ear infection. I was diagnosed with a middle ear infection and sinusitis, told to stop my old meds and take some new ones.
I took a full round of antibiotics to clear the infection and after the bottle was empty i noticed no improvement, and may have felt worse.
I made an appointment for balance testing and an MRI with my ENT. The MRI come back squeaky clean. The balance test revealed that I had sustained "low frequency nerve damage in both ears". I now realize he probably meant vestibular nerve damage.
It's been close to 6 months now, I do feel much better than when this started but I still have constant brain fog and a feeling of imbalance. I also seem to feel worse when I go to stores or busy places. (oddly enough this excludes the gym, it's the one place I feel normal some times, I believe due to the fact working out releases endorphins, i'm not sure). I took an auditory test and they said everything seemed normal which is why I think it is neuritis and not labyrinths, as labs usually also causes hearing damage?
What do you guys think, sound like vestibular neuritis?
P.S. I'm doing some at home vestibular exercises, I meet with my ENT on the 22nd and am going to get him to refer me to VRT. At the moment the hardest thing to deal with is the brain fog, and anxiety it causes. I was thinking about asking to be put on Zoloft as my mother takes this and says it does wonders for her. I'm just nervous that it could make my brain fog worse, or slow down compensation. Do you think either of these could happen?
P.P.S. if you have a success story in dealing with this or know someone who has I would love to hear it. I'm beginning to feel that my life will always be like this and it's <seriously depressing> to be honest.
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After 3 long months and what seems like an endless struggle to get diagnosed, I have been diagnosed with an imbalance between my inner ears due to a viral infection, leading to a diagnosis of vestibular neuritis. The doctor said my migraines could also possibly be presenting themselves atypically and aggravating the situation.
I am doing vestibular rehabilitation exercises and taking steps to unclog my sinuses.
This is the longest ailment I've had and quite frankly I'm fed up, I know rehabilition will take a while, however does anyone know how long this thing can last??? It's ruining my concentration at work and puts me off social situations (I can't drink, it makes me wake up the next day feeling extra dizzy)
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I been diagnosed with vestibular neuritis I am dizzy taking valtrex and Valium can anyone give me some imput on this I had my first vertigo spell on sat.
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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).
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?
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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.
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?
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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.
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.
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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
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?
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Does anyone know if it is possible to over do the vestibular rehabilitation training for vestibular neuritis recovery?
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?
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