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Vestibular neuritis? Looking for some words of support

Posted , 6 users are following.

Tria
Tria

I'm now into the 8th month of what I think is vestibular neuritis (I've never had a proper diagnosis) but it is really getting me down.

Unlike a lot of people it didn't start with a bad spinning episode, in fact I've never had spinning or dizziness. Mine started with a very slight feeling of imbalance and wobblyness, feeling like I was walking on a boat, then over a month or two I began to get other symptoms like mild tickling, soreness and a blocked feeling in one ear and head fog. By far the worst symptom has been the head fog, which is so difficult to describe and cope with, Like feeling drugged or not quite 'in the world'. I've also had a few episodes of almost fainting, ongoing lethargy and loss of appetite, sometimes feeling sickly and bloated, all of which have only presented since the ear problem arose. Over Christmas, after one fainting episode I felt like I had a tight band around my neck, both ears were burning inside, severe head fog and wobbling, severe lethargy and pins and needles in my limbs for a week as well as shortness of breath.

This has really affected my life and I feel like it will never get better. I've been to the GPs umpteen times and there doesn't seem to be any help available. After a battle I was referred to ENT but I'm still waiting on an appointment. So far I've had blood tests, a few ECGs, blood pressure,  balance / neuro tests and all have been normal. Anxiety is a huge problem as I fear something happening when I'm out (especially fainting) and I find it hard to concentrate at work. I've taken a lot of time off sick and can't take any more. Haven't driven since it all started and feel like a shadow of my former self as life is so restricted. I do have occasional days when I'm symptom free but they are rare. Please tell me there is light at the end of the tunnel! 

1 like, 10 replies

10 Replies

  • anne05078
    anne05078 Tria

    Posted

    Good morning,

    You must go back to your doctor and insist more tests are done.  Have you been offered a blood test.

    Do you think it could be a virus making you feel so awful   Meniers disease springs to mind.  Google

    it and see if your symptoms match.

    Many of us on the Forum suffering ETD which is horrible an can cause dizziness.  Anxiety sets in when

    it goes on for a long time without any relief or help from the medical profession.

    Anne

  • terrie27149
    terrie27149 Tria

    Posted

    Wow! Minus the passing out, this sounds so similar to mine. Ent gave me an ENG. Will get results thurs. Stressful..waiting...but aftr that a possible MRI, which I want because I want to feel normal again . I am on a steroid spray for ETD and it seems to really help with my crazy head symptoms.you wouldn't believe how Mt head felt most days..I suffer dizziness , clogged ear, globus ( feeling like something in yr throat choking you), tinnitis, strange sounds I head, and lime wave motions, sometimes like dud firecrackers shooting off, noise sensitivity, I could go on but for another dorum. I'm lime my gosh! I should seriously be In guiness book of world records..seriously..I could name u so much crap I fo thru. .but thankfully They are finally now doing tests, so hoping answers soon forthcoming...hang in there..

  • Tria
    Tria

    Posted

    Thank for the replies Anne and Terrie

    Anne, yes I've had my bloods done a few times and they have always come back normal. I think it might be a virus, which I think is 'flaring' every now and again judging by the recurrent hotness and soreness I feel inside the ear, and then affecting other parts of my body, but I'm just guessing really. Just wish it would go away! I did consider Menier's althoughI haven't had any hearing loss or true spinning sensations so I'm not sure.

    Terrie sorry to hear you are suffering similar symptoms. Hopefully you will get some answers soon! I think it is so hard for people to understand how debilitating this is. I've certainly felt fobbed off by GP's who only ever say it will probably go away on it's own. So far I haven't had any drugs except stemetil which didn't do anything because real dizziness wasn't a problem for me. Before this I've always been fit and healthy so I'm really struggling to be so suddenly struck my this thing!

    I think the fainting feeling has been the thing that causes me the most anxiety. It isn't frequent - maybe once every 1-2 months - but enough to make me worry. I've read of some people feeling light headed and faint with ear infections but it seems quite rare. I've only actually passed out once, the other times very close to it. It did make me worry about heart issues but my blood pressure checks have been normal (apart from one time the day after when it was low) and ECGs have been fine.

     

  • kya51846
    kya51846 Tria

    Posted

    I am currently experiencing the same symptoms. People don’t understand it when I try and explain to them. I’m feeling a floating feeling and motion sickness day and night, even when im lying down. Nausea and feeling unsteady. The onset of these symptoms can be quite scary which made me have a panic attack. My blood tests are all normal. ECG is normal. Blood pressure is normal. I do experience crackling and popping in my ear due to what I think is ETD, but can you have both: ETD and inner ear problems? It’s all very scary. I’ve had these symptoms on and off for a month now. Can you let me know if you have found anything that has eased your symptoms? I’m sorry you are going through the same thing. I just hope there is light at the end of the tunnel.
  • Tria
    Tria

    Posted

    Sorry to hear you are having problems Kya, I understand totally how horrible this can be, even if nobody around you does. Unfortunately I haven't found a way to control the symptoms. I went to see an ENT consultant last week who checked hearing and ear pressure and both were fine, and even after describing all of my symptoms in great detail couldn't give me a diagnosis. It was a case of 'let's hope it goes away on its own' . Naturally I was extremely upset.

    i went on this week to have another episode of fever, prickles in my limbs, nausea and loss of appetite over a few days along with the burning raw feeling in my ear and wobblyness. Dragged myself into work because I can't take any time off and felt terrible. I've been crying a lot this week as I'm finding it so hard to cope, a combination of not getting a diagnosis, feeling as though people don't understand how awful I feel and fearing that it is never going to go away.

    • kya51846
      kya51846 Tria

      Posted

      Hi Tria, thanks for your reply. I’m in the same boat still. I went to an ENT (londen Harley street) and they prescribed me Betahistine, which I need to take three times per day now. The consultant mentioned that he suggests that I have an inner ear problem but he couldn’t put a name to it. I’m sceptical about taking Betahistine but I feel like I have no choice at the moment because the symptoms are taking over my quality of life and I’m willing to try anything. Don’t worry though, your not alone and from some of the posts I have been reading it seems like these symptoms subside but they take time and will power. Stay strong. Your strong going into work; I’ve been signed off for 2 weeks. 

  • becky21031
    becky21031 Tria

    Posted

    I understand how you feel. I had an episode in January 2017 of off balance, brain fog, intense anxiety, feeling my eyes couldnt focus, grocery stores were too much stimulation, neck pain, pins and needles. Its been terrible! I was diagnosed by ENT with vestibular neuritis. He said itd go away in a month. I can say it has gotten so much better a year later but I still have the off feeling and some days are worse than others. For me vestibular therapy helped a lot. Eating better, lower sodium diet, lots of water, enough sleep and moving around as much as I felt. I had to go on anxiety meds because I was having SEVERE panic attacks from the way everything looked. I was scared at first to venture too far from home. Stores were the worst. There was too much stimulation. Hang in there. Once everything else is ruled out I realized vestibular neuritis is a nuisance but I wasnt going to let it define me. Rest on your bad days and rest assured it will get better. And find a good support system. Thats very important when dealing with this horrible illness. Chin up...you WILL overcome this.💞

  • wally-2
    wally-2 Tria

    Posted

    In November 17 i had an attack of severe vertigo and dizziness, i couldn't stand up and was vomiting severely. With me it is related to a cold like virus which seems to be only in my head. Like the rest of my body doesn't feel like it has a cold. The docs sort of couldn't diagnose it or didn't seem real interested. I'm sure it is vestibular neutitis. Right now as im typing this i have dizziness, tiredness and mild headache. My normal symptoms.

    It has settled down a bit since the first attack but i have good days and bad days. 

    So i've been recommended to or have the the following:

    MRI

    CT SCAN

    ENT specialist

    Neuro specialist.

    Naturopath (to fight the virus naturally)

    Audio specialist.

    on and on....

    I dont know which way to turn with this...

     

  • anne05078
    anne05078 Tria

    Posted

    Morning from England,

    Sounds as though you have a nasty virus that's causing your

    vertigo.  Has anyone suggested it may have Meniers diseas.

    (hope I've spelt that correctly)  Try Googling the symptoms

    and read what it says.  It does go, but takes time.

    Cold viruses can leave one feeling awful for so long after

    they've gone.  There are over 250 different cold viruses.

    Some so much worse than others and affect the boy

    differently.

    Do hope you feel better soon

    Anne

    • anne05078
      anne05078

      Posted

      Sorry, should read my posts before sending.

      So that should read: disease and body

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