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Vestibular neuritis diagnosed after weeks of thinking I was going crazy! ) :

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leanne34327
leanne34327

Hi. I am hoping someone/anyone! Can relate to me. 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 mo any post but no one can understand why I have been so weird for months. Please help. Leanne. 

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  • keith17992
    keith17992 leanne34327

    Posted

    hi i have suffered with this since april 2013 and as yet still off work after trying without success the balance exercises the constant unsteadyness felling of drunkeness ,i can understand how your felling
  • lucy68510
    lucy68510 leanne34327

    Posted

    Hey hun,

    i had recently come off my anti-depressant and thought this was a side effect but it aint.

    I know that if this doesnt clear up ille have to go through a whole range of tests to see whats causing my bad symptoms.

    When out and about i look off my head,can only concentrate on my slow walking in front of me,cant look to the side of me or up and down,feel very frightened.

  • tabatha23177
    tabatha23177 leanne34327

    Posted

    Heya Leanne sorry your going through  all this, is not a nice thing to have. I've also been struggling with this dizziness,ligtheaded,tiredness,blurred vision 24/7 and at the start I did get  panick attacks. My 2/3month was the worst but now 8 months down the line and still 24/7 with does symtoms. Im just sick of it  just like you!
  • sarah02282
    sarah02282 leanne34327

    Posted

    Hi all,

    I have just come across this thread from last year and was wondering how everybody is doing with their symptoms? Mine story is so similar to Leanne's original post and I am now 8 months in and desperate for some hope that this will end!

  • anne53212
    anne53212 leanne34327

    Posted

    How is everyone now?
    • yellowlupo
      yellowlupo anne53212

      Posted

      I've just come across this thread myself! I have right-sided vestibular weakness (basically damage to the nerve on that side). The Drs aren't sure what caused it- either virus or trauma as I have history of both.

      Unlike everyone else on the forum I suffered off and on for upwards of 10 years before recieving a diagnosis! It took one canny GP to guess it may be labyrinthitis for me to be set on the right path!

      I was sent for a barrage of physical tests at a specialised unit at Kings College Neurology Hospital in London. Vestibular conditions/symptoms can be caused by all sorts of conditions and these tests narrow down what the cause is. The most relevant test to me turned out to be the 'caloric test'. This is where warm and then cool water is syringed into each ear in turn. I had to wear special black-out goggles that had a night-vision video camera in it; I couldn't see anything but a technician could see my eye movements. When your eyes involuntarily bounce back and forth or up and down this is called nystagmus. Healthy people have this reaction to having water poured in their ear! My reaction on the right side was less pronounced which caused them to believe the signals being sent by right ear aren't being properly received by the brain.

      I'm 35. I think I first had symptoms in my early 20s. As I've got older my 'bad spells' have become closer together which is what caused me to push for more answers. I feel like I'm really hungover and sometimes so exhausted even after 8 hours sleep. As others have mentioned, you don't feel like yourself. But then I've been like this for so long it's difficult to make that distinction any more!

      Some people are 'lucky' and with vestibular rehabilitation their symptoms can pretty much disappear. I don't really know why I'm so 'special' as this doesn't seem to happen with me! I have good days and bad days but I basically have to accept that nerve damage will never heal and I will always have this condition. The only treatment is 'lifestyle changes' (other than vestibular rehabilitation therapy). I no longer do any exercise for fear of causing symptoms. I struggle with flying on a plane. I struggle driving long distances. Any change in routine knocks me for 6. I have put on weight and have to assess every opportunity (social, personal, professional) in light of how I will be able to cope. I came really close to losing my job as I need to take regular sick days to get myself back on an even keel.

      BUT. I have a lovely, messy house, a lovely husband, a job I love and wonderful understanding friends and colleagues. I used to put so much pressure on myself to be a success but once diagnosed I am able to forgive myself and be more forgiving. I have friends that suffer with anxiety and depression -and I certainly have my moments- but the things I used to worry about seem so silly when compared with my long term health and I sometimes feel like everyone should be 'blessed' with a chronic condition as it really gives you perspective!

      I just thought I'd share my experience! I hope the earlier poster doesn't have Menières as that's a nasty, progressive disease and you have my sympathy! Originally it was thought I might have it but every cloud has a silver lining and despite having a life-long illness at least it's not progressive.

      I consider myself to be a 'professional patient ' at this point so if anyone has any questions...!

    • chelsea31880
      chelsea31880 yellowlupo

      Posted

      Hello! Ive come across this forum and it sounds like we have the same thing. Ive never been properly diagnosed. At the emergency room 4 years ago they said it was labrynthitis. Ive read up so much about these illnesses and for some reason mine has gotten worse over the last week...I just really need some words of encouragment I guess...my head is so heavy. And just last week I started to get headaches. Have you ever had headaches with this?
    • yellowlupo
      yellowlupo chelsea31880

      Posted

      Hello! Part of my diagnosis is vestibular migraine, sometimes known as silent migraine. It’s like I get all the symptoms of a migraine but without the typical intense pain. That doesn’t make it better! I still get the nausea and sensitivity to stimuli... I do find I get low level headaches a lot however. They are probably linked but there isn’t much you can do about it unfortunately! It’s lifestyle changes, acceptance of the situation, being gentle with yourself. Sorry I can’t be more helpful!
    • Mmbb10
      Mmbb10 yellowlupo

      Posted

      Can you explain to me what happens when you fly on a plane and when you drive long distances? And what the struggles are? Do you do certain things to help with dealing with flying and driving? Have you stopped traveling altogether because it’s too hard for you now?
  • laura_89571
    laura_89571 leanne34327

    Posted

    Oh boy looks like we are all in this boat mine started Jan 20th I'm still recovering thank you Jesus the worst is behind me .. how are yahll doing now ? 

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