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Vestibular Neuritis likely diagnosis

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Hi 

Did post in the BPPV thread as this was what I was told I have. However given how my symptoms have gone my GP now says he thinks it's Vestibular Neuritis, been referred to ENT that could take up to 26 weeks which is ridiculous given I need to get back to work and provide for my family’s future. Been off for 8 weeks now.

When this started I had a dramatic onset of anti clock spinning so that I feel of the chair I was sitting on, spent 5 hours being sick and had spinning gradually subsiding over the next day.

 

Since then I have had improving degrees of light-headedness and feeling generally odd.

However the last week I have found my symptoms getting worse, sensitive to bright light and horrible headaches.

Also concerned that a kind of split in my vision that has been there for some time.

Cover one eye up then the other and a given object will jump up and right by a small degree, is this normal or part of this condition.

Seem to get so tired after not much activity or concentration.

Been challenging myself to go for walks etc. to help retrain my brain etc.

 

What can I do please to help myself? If I lose my job my life and that of those who depend on me will be in a serious place.

Positive help most appreciated. Thanks

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41 Replies

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  • shutdown
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    Posted

    Hi, thanks to those who replied, for some reason I am not getting any notifications that replies have been made so am only just reading.

    Gets confusing really as so many replkies are not to my post. #marion50354 many thanks, I have been trying various excersises found via the NHS. Some days are really good, then for no real reason like today I feel horrid. Just now, while not spinning (not had that since the original attack) I do have what I call movement delay, when I move my head and eyes to a new object it seems to take a tiny amount of time to catch up. Have been having some horrid sharp pains on the left of my head, doc says not to worry about them, also got a bit of a cold som am hopeful this is why I feel so rotten today. #kate47167  I had recently passed a very stringent medical for hearing and eyes and most other things about a week before this hit me. 

    #ben99468  Ben, many thanks the manouvers have never helped me sadly. Not really been positional related, apart from a slight looking up and down affect that is.

    As I have stated this is a critical time for me now, work medical booked for the end of May and I need to be well on the recovery road if I am to support my family as normal. I do appriciate the replies here, but it is hard work wading throigh replies to others.

    • kate47167
      kate47167 shutdown

      Posted

      The split second delay is normal for a vestibular issue the damage to the nerve that communicates from the eyes ears and brains doesn't work as well so you will get this you may also get blurry vision looking up and down left and right.

      If you get a cold it will make u feel worse even a tummy bug or anything will make it worse.

      There is nothing u can rush and no magic pill the key is to keep moving all u can if it makes u feel worse that's good as it means the brain is accepting the new signals u must also pace yourself and rest lots as if u get tired the dizzyness and balance will get worse.

      One thing I and many others found difficult is walking in the dark as our ears rely so much more on our eyes so if it's dark the ears do not understand. One off vrt excercises was to walk across the room with my eyes shut I ended up all over the place !

    • shutdown
      shutdown kate47167

      Posted

      Many thanks Kate, well some comfort to know my symptoms are normal. What does greatly upset me is that for a few days I think things are really good then I get a day like this. If the nerve is damaged, heals so I feel better does it mean it is being redamaged making me feel bad again?
    • kate47167
      kate47167 shutdown

      Posted

      No it's all about compensation and how your brain reacts to compensating so on a good day u feel wow this is good it's working and I will recover when bang a head turn or the next day u wake up feeling like u do weeks ago and that is the hardest part to come to terms with as it effects every day life.

      I can't plan anymore as I have no idea how I will be and with a 6 yr old and my partner on deployment it's hard.

      You can never go back to square 1 as the damage is done but u can de compensate as I say a cold can do this and u r still in early days for your compensation so it will be very up and down for u.

      Am 6 yrs dizzy couldn't walk to start with took 2 yrs to with had 3 good years and now I am Back to the bad old days and I am struggling to get my ahead around it.

    • shutdown
      shutdown kate47167

      Posted

      Hmmm, this sounds very desperate! the damage is done, no cure or heal? 
    • kate47167
      kate47167 shutdown

      Posted

      No cure, healing is compensation so the brain compensates for the injury so I was 90% dizzy free then because of a great deal of stress and ill health I have de compensated again so now have to start to get the brain to compensate again but am hoping it's easier 2nd time round.

      Thousands of people get VN or labs and compensate very quickly but others and thousands of them don't.

      I remember sitting with my consultant my daughter 4 weeks old being told no cure damage is done but compensation will happen but it's a very long road and not one that is linear

      The fact u r having better days already is a very very positve sign !!!!

    • ben99468
      ben99468 shutdown

      Posted

      Hi Mike, Ben here,

      I agree with Kate about the delay.  To me it feels like my head keeps going after I stop moving it, and all the while I feel uncertain of exactly where things are.  My eyes are more of a problem for me now than the swimming or moving sensation.  

      Notwithstanding the three different diagnoses; BPPV, then Meneires" then Vestibualr neuritis, I think, for me at least, (qualifier) that the Vestibular Exercises help with my recovery.  I too have trouble focusing my eyes due to strabismus, and after I do the Vestibular Exercises for a long time,  I get a headache.  

      I believe the headache is from the extra work my brain is doing working through the changes to external stimuli and trying to focus my eyes upon things up close and then far away as the exercises suggest I do.  

      In my case I think it might be from pushing myself too far or too hard.  I'm not a doctor, but I do believe and I have been told by Vestibular Rehabilitation Technicians, that I need to keep pushing myself to get as close to normal as possible, so I push, I just don't know how much is enough and probably go too far.  I chalk it up to learning in progress.

      This may be why you feel better some days than others.  I am not working at the present, and I have been working on this non-stop since it hit 16 months ago.  So, when I over do it, I just take a break.  Sometimes for days at a time.  This may sound luxurious, but I am closing in on retirement age and not working means no money put away for retirement, so it comes at a price.

      Mike, I sincerely feel for you and others who have to work and take care of a family too, I don't have anyone but myself and I don't believe I could take care of anyone else or work with this hideous disease.  That is how I have time to work day and night to find out all I can about it.

      Good Luck

      Ben 

    • kate47167
      kate47167 ben99468

      Posted

      Your totally correct with the vrt the more u do the better u will get and i am proof it works. I saw my consultant 2 yrs ago to just say hi and he stood there and was so pleased that I had worked so hard to get where I was then.

      It is so hard to get the amount of activity right people used to say u doing to much but having a new baby I had to try hard.

      To find mysekf back in the think of it again is very upsetting as I thought I had beat it.

      So all I can do is get my head back in the game and start back on the grafting !

      Today has been a generally better day then just cooking dinner and oh dear the motion and bouncy eyes are back, anything that means lots of small head movements like in the kitchen will make the dizzies bad.

  • shutdown
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    Posted

    Now I am getting doezens of notifications that are not to me, can't cope with this, thanks to those who tried to help
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