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

Posted , 16 users are following.

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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  • megb4387
    megb4387 leanne34327

    Posted

    Hey Leanne! You sound a lot like me. Don't worry- we have the same symptoms.. Lol! 
    • leanne34327
      leanne34327 megb4387

      Posted

      Hi meg. Really? I just feel like I'm nuts and don't know which way to turn sometimes. It's just hard to believe an inner ear problem can make you feel this way! I'm off on holiday next week and instead of getting excited like I'm used to being I'm panicking about how I'm feeling. How long have you had this for? Thanks for replying. It's so comforting having someone to talk to! Leanne x
    • megb4387
      megb4387 leanne34327

      Posted

      Hey Leanne- one of my friends Shish is also going to post here tomorrow as he has had the exact same thing as you and I. I have been suffering with this since the end of Dec. so roughly 5 months now. My first few months were hell. It lasted from Dec/Jan thru April. It was constant panicking, etc. This time around (about a week ago it came back) it hasn't been as bad. You just have to remind yoursel you're not going to pass out or anything even though it feels like you will. And keep active. That's my best advice. If I hadn't of pulled myself off the couch and into the real world again I probably wouldn't have healed as fast as I did. Your brain needs to reprogram itself. It's sort of like you're an infant but your not smile 
    • leanne34327
      leanne34327 megb4387

      Posted

      Wow roundabout the same time as me then! I am having to keep active as being still makes it worse for me if that makes sense, I'm just really scared the old me will never come back. It's so surreal and scary. My eyes look like I'm on drugs! 🙀 thanks a lot meg, you have made me feel a lot better about things. I went into sainsburys today and my heart was just pounding hoping I didn't bump into anyone, yet other days I feel kinda ok with it. It's such a weird one isn't it! Docs only answer was anti deppresants but I don't really want to go down that road. Thanks again. I'm glad you are feeling much better now. I'm pretty sure we both had a terrible Xmas 2013! I'll never forget that Xmas for all the wrong reasons! X Leanne x 
    • megb4387
      megb4387 leanne34327

      Posted

      Hey Leanne! Yeah it is comforting to have people who understand.. isn't it? My family was so sick of hearing me complain.  And what sucked the most was nobody understood how frightening it was.  I truly convinced myself that I was dying or had a brain tumor.  I had a hearing test done, neurological tests done, blood tests done, etc. and I am perfectly fine! So don't fret! I don't take medication for the anxiety that comes with it.. I just manage to tell myself to breathe.  My worst days are when I am at work.  The bright lights trigger something really awful for my balance.  And I hate the clogged ear feeling as well.  Ugh! 
    • megb4387
      megb4387 leanne34327

      Posted

      Oh, also.. I hate how tired it makes me.  Some days I feel like I can fall asleep shortly after getting up sad I went through a time where I didn't even recognize myself in the mirror because I was so not "attached" anymore.  My eyes were glassy and watery, too! 
    • leanne34327
      leanne34327 megb4387

      Posted

      Thanks so much meg, yes you explain everything the same as me! I try not to mention it to family as well because I can tell they are bored of it. I wouldn't wish this on my worst enemy. Glad to hear you not taking medication either, I just don't want to. Even if my symptoms are bad I like to be in control of it all myself. Even when I feel hysterical with it. I will deffo keep in touch if you don't mind. I'm the same with the lights too. I went to my daughters school play at christmas and my eyes were just flickering all the time because of the lights. 
  • Babz36
    Babz36 leanne34327

    Posted

    Hi Leanne. I'm in my 8th week of what my dr "thinks" is either Labyrinthitis or VN. I too am suffering with extreme anxiety a and cloudy thoughts. I begged to be sectioned last week as everyday life is just so hard for me at the moment. I'm constantly off balance/feeling drunk and get tired so fast. I have safe places that I know and safe people I'm ok with being around but I struggle doing normal, every day things!! 

    You aren't alone, it's so horrible feeling this way xxx

    • leanne34327
      leanne34327 Babz36

      Posted

      Hi there. I'm so sorry you are feeling this way. It does make you feel desperate to feel back to your old self doesn't it. Keep going back to your gp until you can get a referral to a balance clinic. I get really down about feeling like it, it's just not the normal me! I don't know where she has gone but I'm hoping she comes back once this balance disorder goes! I can't stand the panic feelings that come with it. And I feel the same drunk feeling as you. Panicky drunk I call it. 
    • megb4387
      megb4387 Babz36

      Posted

      Hey Babz, the drunk feeling is so common! I think we all have it! Weird to feel drunk without being drunk, huh?
    • Babz36
      Babz36 megb4387

      Posted

      It's horrid! I get so anxious about stuff! I've got to go out this morning as we have a wedding this week and in having my nails and brows done. I've been awake since 5 worrying! Xxx
    • leanne34327
      leanne34327 Babz36

      Posted

      Honest I'm just the same! I'm going away next week and getting my hair and nails done at the weekend, dreading it (whereas I normally wouldn't) but since I've had this in just scared of everything! We will be ok. Deep breaths hey! X 
    • Babz36
      Babz36 leanne34327

      Posted

      Yeah I'm going any minute. Sweating, heart pounding etc xxx 
    • leanne34327
      leanne34327 Babz36

      Posted

      Really try to think of something else why you are there to take your mind off it. I always find having water handy helps. Try and take your mind off your own feelings and concentrate on other things around you like what people are wearing thier hair etc. I hope it goes ok x
  • shishir
    shishir leanne34327

    Posted

    Hey Leanne, welcome to our dizzy world! Hopefully you won't be here as long as some of us. You may have come across this post, if not have a look through it. It was my first post on this site last year and a lot of people have commented on it along with my story. (It probably has more info than you need but it won't hurt!)

    patient.info/forums/discuss/labyrinthitis-vestibular-neuritis-please-help-40298

    Let me know if you need more info!

    Shish

    Patient Moderator Note: I have repaired the link.

     

    • leanne34327
      leanne34327 shishir

      Posted

      Hi shishir. Thanks so much. I'll take a look. Leanne ( : 
    • leanne34327
      leanne34327 shishir

      Posted

      Hi shishir. Unfortunately the link won't open for me. I'll have a look through patient.info to see if I can find it. This is so nice having people who understand! Instead of friends and family just saying 'have you still got that' at least it's not serious! Thanks again for everyone's kind responses. It really really makes me feel more at ease. Leanne x
    • shishir
      shishir leanne34327

      Posted

      Hi Leanne. A forum mod has repaired the link so it should work now smile.
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