Vestibular Neuritis - Vestibular Nerve On My Left Side With 80% Weakness
Sep 18, 2015
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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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.
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.
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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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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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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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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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how to deal with this thing feel like I am walking on air.
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I know why you're here...You are on these boards hoping and praying to be released from the nightmare that is Vestibular Neuritis. I explained why I spent so much time on these boards to my husband this way: It's like we've been thrown in prison for a crime we didn't commit and we need to spend every, single, waking moment looking for a way to escape--some miracle answer that will relieve us from these horrible symptoms. We've tried just about everything and we've done what our doctors have told us, but the symptoms persist...
I am here to tell you that there is hope. I was diagnosed with VN in April 2013. I was told that the condition would only last "a few weeks," and then I'd be back to normal. That absolutely did not happen. The symptoms hung on and on and on for months--I'm still not completely healed--and in the process, I have had to adjust my entire life. But today, as I type this, I am not nearly as sick and dizzy and nauseous as I once was. I can carry on conversations with people and not feel like I'm going to spin out of control! I can sit in a meeting at work and focus.
I seem to have had all of the symptoms: Nausea (really felt like I was on a boat for about 2-3 months; ringing in the ears (which they say doesn't happen with VN, but I am proof that it can); popping in the ears; ear fullness; tingly scalp; creepy crawly sensations on the face; numbness in the fingers (due to horrific anxiety); severe imbalance; really horrible neck pain; fullness in the cheeks just under the eye and near the nose; difficulty concentrating; awful dizziness; and the worst for me: real difficulty in driving. I pretty much had to stop driving all but the very shortest of distances. This has been so depressing and hard as a very busy mom who also works outside the home.
I would wake up every day and not be able to believe I was still in this horrible situation. I would start moving around a little and sure enough, the dizziness and nausea and imbalance would follow. And we have the one disorder where they tell us that medication actually hurts us in the long run! Such a Catch-22. I was fearful of taking Ativan or Valium or anything addictive, even though it would certainly help with the awful anxiety and the dizziness. It was a nightmare. I still can't believe it has happened to me.
But...The brain really does--slowly--start to figure things out. I liken this to a marathon, and each day is only one small step of recovery--or more accurately, each week is like one step on the journey. It's that slow. Or imagine trying to get through a 24-hour day, and each week of recovery is like just one second ticking on the clock. It's just really, really, really slow. More painfully slow than any of us can imagine or bear, but we are progressing.
I also decided in July to take an SSRI. It is non-habit forming and I read one study that suggested that SSRIs actually help with ear function. I needed to get something to reduce the anxiety. I was having panic attacks just about every day. And also, having to accept that my life has been so disruptive has been indeed depressing, so the SSRI I think is helping with that.
Today, the ear popping and fullness has stopped. I still have ringing. I am not nearly as nauseous or dizzy, but I do have my days where I can feel it profoundly--these are fewer and farther between. Relapses happen, which is beyond depressing, but they are short lived. I can drive a little further--still not full time, but getting a little better with lessened anxiety. Bottom line is that it's just not as bad as it was. I think that's how we have to measure this. We have to say, "Did I feel better or worse last summer?" Not, "Did I feel better yesterday?" The improvement is so slow it's almost immeasurable, but it's there.
I would just encourage anyone out there to keep the faith and take care of yourself. A good friend of mine that I found through these boards reminded me of that. It's going to be okay. We're just in a tough spot right now, but we're not alone, and it does get better. Hang in there, friends!!
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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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I have had Vestibular Neuritis since I was 6 years old. I didn't find out I had this until I was about 17 years old. I was at first diagnosed at age 13 with having BPPV (benign paroxysmal positional vertigo), but we discovered after about two years that this was not it, when the exercises failed to work. Once I was diagnosed correctly, I attend rehabilitation therapy. I have been doing the eye-exercises they gave for about 3 years now, and even still after that much time, if I slack off the vertigo returns. My therapist did tell me that the nerve in my inner ear was damaged and that I probably have a more severe case of VN (do to how long I have had it and describing my attacks), but has anyone else been taking this long to recover as well? I am grateful that I don't have something worse than VN, but still it is annoying (especially during the fall and spring: allergies) and I am okay if I end up dealing with it the rest of my life the exercises do keep the symptoms at bay most of the time. I was just wondering if others have taken this long or longer to recover as well.
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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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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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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 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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I have been diagnosed 5 months ago with Labrynthitis.. Not sure if it's actually what's going on because it was a pretty quick check up at ER. Extremely lightheaded, unbalanced and foggy headed is the major symptoms. Have noticed it gets a lot worse when I'm out in the cold for a period of time. Been going on for about 5 months now.. Back in September I had a really bad sinus cold. After those symptoms passed, a few days later I got an extreme wave of lightheadedness dizziness and was surprised I was still standing when I realized what was going on. Somehow I finished my shift at 11am then went to ER. Could barely even walk in there.. The only time it went away was when they gave me amox-clav pills and about 7 days in I felt 100 percent and the last few days of medication zero lightheadedness. After done with those everything came back a couple days later and never left. Was the amox clav pills just coincidence or maybe that tells me something? They said I had Labyrinthitis and sinusitis but it seems that the symptoms of vestibular neuritis relate a lot more.
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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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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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