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Vestibular Neuritis

Posted , 17 users are following.

care31788
care31788

Hi all: I am really hoping someone can help/assure/calm me right now. About 3 months ago (Nov 1). I woke up one morning and did not feel dizzy but definitely off. Groggy, lighheaded, 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 wasnt 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 inflammed 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 inflammed. 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 inprovement 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 sad 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 ENT 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. Hopefully someone knows what I'm talking about and can relate??

0 likes, 26 replies

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  • marlene21102
    marlene21102 care31788

    Posted

    Don't want to set alarm bells going Care but I've got what you have ,had it 3 years every day  just began as you said ,feels like I'm walking on Sponge ,got the swaying / rocking motion ,have you had any neck ache ? have you had eye test since it began ? 

      Stay on top of all ,you can get pushed from pillar to post if not  and the time it takes is a long one .I suffer tinnitus ( ear hissing / ringing ) have you eczema in ears ,I have ,I wouldn't recommend ears syringe if no tinnitus ,as that can set tinnitus off .Go get an eye test prior to ENT I would if not already done so .All my troubles began with a viral illness  so don't let anyone put you off getting things looked at .Stay in touch on here lets know how you go on ,miserable condition ,have good read through these threads  your find there's many of us .

    • nikki1978
      nikki1978 marlene21102

      Posted

      Hi Marlene,

      I've had problems for almost three years too.  It started after having a sinus infection.  Did you have the vestibular testing for a diagnoses?

       

    • marlene21102
      marlene21102 nikki1978

      Posted

      Hi Nikki ,they can't decide what it is   I've had Rhinitis now for the 9 yrs plus now,virus started that off ,along with my tinnitus going louder ,but I blame my tinnitus increase on drs meds along with anxiety ,all for going to see Dr with what I found out to be now Rhinitis all along .My ears feel full up every day ,then 3 yrs ago be 4 yrs come June/ July time .So is it allergies ? Root cause ,is it an immune thing ,something like what we digest daily ,milk,cheese ,this makes me wonder is it gluten ? We're eating all sorts could be just that an allergy ,doing it .We all live different areas ,so different ENT 's some bright spark out there just may have the answer .Im no further on than I was when it began ,sad that is to say .😞
    • dawn59672
      dawn59672 marlene21102

      Posted

      You might want to give Probiotics a try!  I think you are definitely right about the digestion thing!  
  • care31788
    care31788

    Posted

    Thanks marlene21102. So frustrating. I actually called for an eye test last week and they said because I already had a full eye exam 6 months ago I'd have to leave it up to the doctor to decide if I need one or not and I may have to pay because they only do full eye exams yearly or every 2 years. I said I didn't care at this point and would pay anything! Thanks for the msg. Do you feel this way too?? Light sensitivity? Feels like you had 2 glasses of wine without having the wine???
    • marlene21102
      marlene21102 care31788

      Posted

      I don't feel light sensitivity. But I know few who do ,think Darren and Travis feel shelving in shops moving ,Darren had that bad  ,no doubt if he's on site reading he will jump in ,he's gone into varifocals now ,said he's so much better ,but got his anxiety under control first .

         I've had MRI ,all clear that was for tinnitus ,then because of this constant neck ache ,finally had a scan ,found 2 bones in neck out of place ,had them painfully put back in ,but hey pain still remains .

        Now for eye test  had what 4 eye test now. All fine  no prescription changes as such  so the eye pressure fine ,relief knowing that ,so eye socket pain is just the Rhinitis doing that ,the rhinitis eye pain makes me tired ,little wonder there .Yes I'm teetotal. But I know what you mean about drinking 2 glasses of wine ,without drinking it .I don't know how one works having this condition. I've said it before to Darren and Anne take my hat off to them ,they to work .On Face book a Dr came on he developed Virtigo ,they showed him having the Epley done on camera ,will see how he goes on with treatment ,he to said he didn't like the imbalance he was feeling .What I will ask ,did you have glasses ,if so have you had a prescription change in them ? Just something Darren once said about how they think you should see minute things  while wearing specks .

  • jodie77731
    jodie77731 care31788

    Posted

    Hi there... Care smile firstly you are not alone! I do fully understand what you are describing. My situation is very similar to yours... Mine started the first week of January... Came on suddenly just like yours and I have felt off ever since... I have read I believe every post to this forum on this subject... As well as spoken to six doctors and done research on the web... One of the factors with the middle ear is that it is the control for your sense of "well-being"... I too have felt not necessarily dizzy or lightheaded it is very hard to explain but it just isn't right... My eyes too work very hard to focus and the nystagmus has it shaking back-and-forth very rapidly. And I too have never been so tired in all of my life! It is a terrifying experience! I have been waiting for my appointment with an ENT for a full month and it is finally here next Tuesday the 24th.. I have been preliminarily diagnosed with Ménière's disease... That has only been by one doctor and the others have not confirmed that... I also become very anxious and feel like my life has been completely put on hold... I will repost as soon as I have my appointment Tuesday and let you know if I find anything out that is helpful as I was also told that my ear seems a little red and it may be viral... I wish that I could tell you something very specific that would make you feel better... But for now at least take comfort in the fact that you are not alone and many of the people including myself on this forum understand what you are feeling and experiencing... And of course the not knowing causes anxiety which compounds the situation... It is not an easy thing but do try to do things that will help you stay calm... I was so upset that I made myself more sick by acquiring something now called GERD! Which is acid reflux gone wild for which I now have to take medication... Do things that you can that make you feel calm while awaiting your appointment with the ENT... Take a warm bubble bath... Sip a cup of herbal tea... Listen to calm music (I also have a terrible tinnitus and the music really helps that to mask it)... Get as much rest as you can.. I was told that the reason I'm so tired is because I was trying to focus so hard and body working so hard to right itself just it exhausts me... So eat well and take your vitamins... I too understand about feeling not supported by a doctor... My GP and her nurse stopped returning my call! And I had only made an appointment twice over this situation... I was horrified! So I switched doctors.... I am now seeing the same doctor my father sees and he is taking me seriously and was the one to refer me to the ENT. Read the forum here and you will see that many people are in the same situation or at least very similar... It helped me to know that and I hope it gives you some comfort and some information too!
  • crystal29909
    crystal29909 care31788

    Posted

    hi, there's a lot of similarities between what you described and how I felt back in June. mine started as being slightly dizzy and feeling off. as the week progressed my dizziness got so extreme that I couldn't get out of bed, lights even dim ones bothered me badly and I've dealt with fatique from anemia before but the tiredness with this was even more grueling. long story short I seen numerous different dr.'s had an MRI, MRA was hospitalized for 3 days and pumped full of anti nausea and anti dizzy meds. and who knows what else. after the 3 days I was advised that it was bppv yet when a different dr. did the eppley maneuver and it didn't do anything he said that wasn't it and reffered me to an ENT. at the ENT office he did a test where they blow cold and warm air into each ear and have you follow a light. with this test he was able to determine that I had VN and my right ear was significiantly off. he said it was most likely caused by a viral infection even though I never had any ear pain. I thought once the viral infection goes away I'll feel better. unfortunately it doesn't work that way. the viral infection permanently damages the inner ear  and how I felt afterwards was the lasting effect. good news is that with vestibular therapy and constantly going about your normal activites you can retrain your brain to find it's new center. the exercises seem very easy but once you try it you'll understand how difficult. I'm 41 very atheletic and always wore 5 inch heels and never lost my balance. when I first did my vestibular exercise I was wearing tennis shoes and was told to put one foot precisely in front of the other like walking a balance beam, I could only stand there for a few seconds before I lost my balance. I was stunned by how I wasn't able to do simple balance exercises. it took me roughly 3 1/2 months before I finally felt normal. during those times though I have to admit there were times I cried thinking I would never get better. the ENT advised that I not take any meds. bc it makes it harder for your brain to compensate with medicene also as difficult as it is go out and about especially grocery stores and look up and down the isles. tip:hold on to a cart. it's been 8 months now and a great once in awhile I'll turn my head a certain way and feel a tinge of dizziness but it doesn't last long.the tiredness and light sensitivity gradually go away too. sum up your questions yes an ENT can confirm if it's VN. also all the tests I had done can be done if you were pregnant. however I'm not sure if you want to deal with dizzeness and morning sickness together though. best of luck
    • jaz210
      jaz210 crystal29909

      Posted

      Reading this gives me some sort of relief to know I am not alone, Ive been having this lightheadedness and off balance stuff for about a year and 4 months now, triggered ny anxiety and i had no clue as to what was wrong, had an mri and all sort of blood work done, seen 4 different doctors, neuro and ents and everything kept coming back normal, at that point I thought i was dying because i recieved no answers as to what was going on. Now a year later my doctor determined i have an imbalance in ny left ear and I do have VN. He advised me to go back to Vestibular therapy which i was doing and stopped because i felt it was doing nothing, but this is really debilitating and gets depressing when I cant do what i used to do, how do you cope with this? Sometimes i feel like i am going to pass out, i get these flushes and it freaks me the hell out..
    • marlene21102
      marlene21102 jaz210

      Posted

      Jaz I've had this for over 3 yrs ,I'm amazed at how many suffer this  like you it gives me anxiety ,so your not on your own  ,don't freak me out ,but it's so stressful ,trying to hold yourself steady ,I'm on the Rocking / Swaying balance ,I get terrible neck aches with it .Ive never sat down so much in my life as this .yes it's good in the saddest way. To know your not on your own. Trying to get back to the old you .Did you see on the US drs show one of the drs got Virtigo only last week  it was up on facebook ,if your on F/B go have a look .ive not found the answer as yet ,but got to be out there .
    • crystal29909
      crystal29909 jaz210

      Posted

      Hi jaz, hang in there it does get better. Keep with your vestibular exercises they really do help. I know the anxiety that comes with all this can be overwhelming but try to find something that calms you. I know when my dizziness would get too bad I'd snuggle on the couch and watch tv. Oddly enough keeping my head in a still position and watching tv seemed to take my mind off of it and it relaxed my eyes. I seriously have watched enough tv in those few months to last a lifetime but what a lifesaver. It made me feel somewhat normal. I also noticed that stress, caffeine and not enough sleep made things worse.  Keeping up with the exercises was a big helper though. Hope you feel better! 
    • paula59
      paula59 crystal29909

      Posted

      Hi Crystal / Jazz - Im the same and Ive been diagnosed with silent migraine. Im dizzy when I move my head, but sitting perfectly still is OK, I have pain behind my eyes and in my forehead and back of head and neck. I also have cheek pain. I get pins and needles over the top of my head and hot flushes. If Im anxious or stressed its much worse. A cold makes it a million times worse. Theyve tried all sorts of medication on me but the only thing that stopped my eyes from jumping about was botox. I am waiting for the next appointment. Ive had endless meds for epilepsy which did nothing and now going onto beta blockers. Rocksolid mentioned SCM muscle and I googled it and the symptoms are the same, so now Im wondering if the neurologist hasnt got it right.
    • janett
      janett jaz210

      Posted

      I too feel like I'm not alone in this nightmare sad
  • paula59
    paula59 care31788

    Posted

    Hi you sound like youve got the same as me nd Ive got silent migraine.  I have real problem with lights.  It started with dizziness and bad head, weird eyes which were jumping about, blocked ears which feel full, but my symptoms change on a daily basis except for the dizziness which is always there.  I cant walk far outside as I feel unsafe and wobbly and need something to hold onto.  In shops the colours send me eyes funny and I cant look at anything properly.  It took over a year to get the diagnosis.  You need to see GP who will refer you to ENT who will be useless.  You need a scan to rule anything serious out then hopefully onto a neurologist.  I went to the migraine clinic at harley street and they explained its the corrugator muscle in your head *currently being shown on nurofen advert) which irritates the trigeminal nerve underneath which causes the weird head stuff.  I had botox which froze the muscle and relieved the nerve.  The jumpy eyes stopped.  Im now waiting for next botox appmt.
  • will72
    will72 care31788

    Posted

    While waiting on the medical establishment for a diagnosis. Let's say it's a long time between appointments and then disappointment. As result I've been looking at homeopathic medicine. Might work, might not. If it does it might take some time to see results. One thought I have had is maybe the symptoms we suffer from are a result of some kind of body imbalance. In which case I'm wondering if a homeopathic doctor could help in restoring balance.  would be good to known what experiences anyone had going this route. I know for me ginger pills help settle down the imbalance feeling. Anyway thinking out loud.
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