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Vestibular Neuronitis????

Posted , 10 users are following.

Stacy0624
Stacy0624

4 weeks ago I had fullness in my ear on and off I went to the doc and they irrigated my ear. After that for the next 3 weeks it's been hell. The vertigo was bad the first week then it was a dizzy off balance feeling. I went and had an mri all clear. The Ent says I have vestibular neuronitis. All day I feel tired and off...my mind is not sharp or clear it's like I'm living someone else's life. When I lay down to go to sleep I close my eyes while laying propped up on my back...sometimes I get jolted away and feel dizzy but not the spins. I wake up with my body tingly and totally off... it gets better as the day goes on. I'm starting VRT but I feel hopeless like it's never going to go away. I used to be happy and full of life... now I'm sad, anxious, spacey and off all the time ... anyone else experience this? Especially with the sleeping the doctor said that is very strange. Oh and my tinnitus went away after the first week.

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  • Laurie34
    Laurie34 Stacy0624

    Posted

    Yes.  I also have vestibular neuritis and know exactly how you feel.  It's a long road.  I have good and bad days.  Mine started 8 months ago.  I'm now in vestibular physical therapy.  I went too fast and my symptoms increased. Take it very very slow.  If the PT gives you 3 times a day stick with just three.  If it's 20 reps only do 20.  I don't have the sleeping issue.  I have dreamt about being dizzy because it's part of my life. It makes me very anxious and sad.  It's drepressing at times.  But I'm pushing on.  It's all I can do.  
    • Stacy0624
      Stacy0624 Laurie34

      Posted

      Thank u for your response. Has your thinking changed? I feel so off and spacey and unhappy. Will that get better? Did you adjust to it?
  • gillian76726
    gillian76726 Stacy0624

    Posted

    Ys imalsomhad my ears irrigated for wax a week or so before i got the same problem!  Was told by the gp and since then other specialists ithad nothing   to,do with it,. But i am not,convinced!!

    Check a site called VEDA (They are on line and FB) Vestibular Disorders Assoc..They Have a lot info fo and you ca ask questions on the social media page too.

    • Stacy0624
      Stacy0624 gillian76726

      Posted

      What do you think it is if it's not vestibular neuronitis? Did you have a change in mood and behavior? What about your sleeping?
  • Terry6872737
    Terry6872737 Stacy0624

    Posted

    It gets better.  There is just no way to know how much time it will take for recovery.  Normal recovery for VN, vestiubular neuritis (neuronitis), is 6 to 8 weeks.  Some of us, it takes longer.  It has taken me 26 months but, I am extremely close to having made a full recovery.  I remember the issue with feeling like I was startled awake.  It helped me to sleep propped up on 2 or 3 pillows.  With the onset of tinnitus it sounds like your issue was Labrynthitis instead of VN.  Either way both are treated the same.  Labrynthitis would have resulted in the tinnitus along with your other symptoms.   
    • Stacy0624
      Stacy0624 Terry6872737

      Posted

      Yes I always see with about 3-4 pillows propped up and lay on my back.

      I was diagnosed with BVVP and VN... I went to physical therapy today and they did the second epley maneuver and the spinning was less so I'm happy about that. She said once the BVVP is fixed they can work on the therapy for the VN. Luckily I have an amazing therapist she is such a cheerleader and determined to get me better.

      Wow 26 months that's a long time. Are u able to go to work? I haven't because I work behind a computer all day and it was so dizzing. .hopefully in the next month I'll be much better and can get back.

      Did u have the hopelessness feeling?

    • Stacy0624
      Stacy0624

      Posted

      Oh and my tinnitus only lasted a week. Then it was gone. Sometimes I have it here and there but it goes away pretty quickly.
    • Terry6872737
      Terry6872737 Stacy0624

      Posted

      Yes, I felt hopeless may times and so frustrated that I would feel that I was getting better then, I would have some level of setback.  Recovery is very cylical.  I first returned to work after 2 weeks from onset but, I over did some VRT exercises that I found on the internet at week 7 or 8 and I had a major setback.  I was off from work for 2 months after that.

      I had BPPV as well and once they got that cleared the VRT seemed to begin to help.  I guess that the important thing that I finally realized was that you will not wake up one morning and it be gone, like it came on when it started.  The progress is slow and only minor improvements until you notice that it has faded away.  Some things still bother me but, nothing like it was when it began.

      It can prove to be a long journey to recover but, don't lose hope.  You will get there.  

  • melody08508
    melody08508 Stacy0624

    Posted

    Sounds exactly like me. Mine is nearly 6 weeks in now. I find dealing with the anxiety has helped a lot. I never had anxiety before in my life until this started! I take natural supplements that have helped me hugely, and also try to always keep in mind that even tho u feel awful, it's not harmful. I too have just started vestibular therapy. I'm doing the cawthrone-cooksey. It's helping. I'm not dizzy anyway (was dizzy 24/7 for 1 week) but now I just feel fatigued and not myself. My balance feels off too. U can YouTube those exercises aswell but def don't over do it as u will have a set back. I do mine three times a day for no more than 5 minutes. I stopped all nausea and dizziness tablets about 3 weeks ago. I heard that slows recovery down too. And keep moving. If I sit around all day I'm a lot worse. U need to keep the brain busy so try and do normal day to day things without over exerting yourself.
    • Stacy0624
      Stacy0624 melody08508

      Posted

      It sounds like you and I have the same thing. Yup the physical therapy is really working finally. .. it's good to read that some people have success when the majority of online blogs seem hopeless...
    • melody08508
      melody08508 Stacy0624

      Posted

      I was reading blogs and things off google for weeks and I think it made me worse! All these people saying they had it for years :-( I'm in the same boat as u now. Im feeling better (haven't been dizzy for a few weeks now) but I feel my balance is still abit off. When I try and do my therapy and close my eyes and balance on one foot I can't do it! I still have some nausea so eating isn't 100% and I feel like my mind isn't present, but I can still go about my days ok. I get anxious when I'm stuck in traffic which is annoying. I think it's the feeling of being stuck! But Iv spoken to a few people who have come out the other side :-) they said u can feel abit off for a few months. I have started seeing a chiropractor to help as my neck is out of whack.
  • dee50000
    dee50000 Stacy0624

    Posted

    "Brain fog" and getting tired and not being able to concentrate, etc. is part of it. I just read the other day that a doctor explained that feeling as "imagine if you had to walk around all day on a balance beam...". Good luck. Time is your best friend right now, be patient.

    • Stacy0624
      Stacy0624 dee50000

      Posted

      Thanks... for some reason I get no relief from.sleeping. I lay on my back propped up on pillows and I sleep on and off but always wake up feeling like my brain is going a mile a minute and I'm "off" during sleep. I actually prefer to be awake then sleeping. No one can seem to explain this.
    • Stacy0624
      Stacy0624

      Posted

      Finally I'm finding relief.. it's been four weeks and a day... I really believe vestibular therapy and acupunture is the key!!!! After my 4th round of therapy and first acupuncture appointment i was able to sleep last night!!!! I still woke up a bit dizzy but nothing like I've been for the past month.... I see hope!
    • Laurie34
      Laurie34 Stacy0624

      Posted

      Do you feel the acupuncture was really helpful?  I'm considering trying it

       

    • Stacy0624
      Stacy0624 Laurie34

      Posted

      I think so. I only had one treatment yesterday. If anything it brought my anxiety wayyyyyy down. It didn't cure me but he said it will take a few treatments to help with the dizziness. I can say though last night was the first night my brain felt rested instead of fighting the spins. As my physical therapist said, it can't hurt. I really do believe it's well worth it and it gives you that relaxing feeling that I feel is necessary for this illness. Even if it's for a brief moment.
    • Laurie34
      Laurie34 Stacy0624

      Posted

      Thanks Stacy.  It's such a horrible feeling all the time.  It's exhausing.  So any relief is welcome. 
    • Stacy0624
      Stacy0624 Laurie34

      Posted

      Yes I understand completely. As I sit and type this I feel very off.. but once I start moving during the day it gets a bit better. I just can't wait until my mind gets clear again. I always feel like I'm in a fog or not present.
    • Laurie34
      Laurie34 Stacy0624

      Posted

      Me too.  That's how I feel.  I just want to be myself again.  When I have a good day I'm so happy.  Hopefully the PT will help us both.  
    • Stacy0624
      Stacy0624 Laurie34

      Posted

      I just want my thinking back... why does the minds thought process change? Not sharp or clear headed... I can't stand it
    • Stacy0624
      Stacy0624

      Posted

      Ahhhh. I think I just realized something. .. I thought I was waking up dizzy due to the VN but I just read it can actually be morning anxiety. ..that really described what I'm feeling in the morning. As soon as I open my eyes I feel a sensw of being off, body tingles, anxious thoughts. I'm hoping now since I'm aware of this it gets better. .
    • melody08508
      melody08508 Stacy0624

      Posted

      That could be me too. I was told anxiety plays a huge part and that we really need to get that under control
    • Stacy0624
      Stacy0624 melody08508

      Posted

      Absolutely! I think it's 50% of the problem.... I'm doing meditation, acupuncture, and taking Wellbutrin to get it under control. I think once the anxiety and depression is under control the vestibular system will compensate with physical therapy.
    • melody08508
      melody08508 Stacy0624

      Posted

      I agree! It's a treadmill that we need to get off! I see a chiropractor who is helping me with the dizziness and my headaches. The doctors here won't refer me for therapy until it's been 12 weeks :-( but I am trying to get on with life. If I sit on the couch all day I feel worse so I try and keep busy :-) hoping that's therapy for me!
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