vestibular neuritis

Posted , 9 users are following.

Hi!  

I have been diagnosed with vestibular neuritis recently...in the last 8 weeks and I have to state this has hit me like a ton if bricks, being a fit active person....this has changed my whole life....

I am not able to go to work as a evening duty manager of a local supermarket. ....as my job dosnt allow for me to sit down or even have breaks.....

I have been to the docs twice....first visit diagnosis and second visit to get another sick note because I still have it.

I am not on meds now as the doc prescribed prochloroerazine andits only used short term to aleviate nausea.... .I dont have the nausea now

headaches.fatigue.and drunk /swimming sensation.the floor seems fluid

. ..... I cant drive and I cant stand for more than ten minutes at a time..... but I try and do as much as I can around the house even if its on my knees lol

Im to go back to the docs in two weeks if it hasnt gone and he will then refer me to an ent...

and I guess ill request yet another sick note.

ive been told that im entitled to ssp for upto 28 weeks . If this thing dosnt go and im deemed unfit for work will I be able to get diability allowence...... I am married....but im worried that my wage loss will impact our lives.....weve already started tightening our belts 

we dont by any means live hand to mouth but have started to plan incase this is a long term situation. .... I have asked the doc how long but understand that it seems to be an unknown smile  would be gratful for any ideas and feedback thanyoooo sad

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  • Posted

    Hi Nicola

    I have had very similar symptoms but I could no longer live like that. After my second visit to the GP and second round of cortisone and antibiotics, I calles an ENT myself and went to see him. 

    I ended up having a brain MRI and was referred to a Neurologist. I have been diagnosed with another c

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  • Posted

    Hi Nicola  Yes it hit me like a ton of bricks too.  My diagnosis was BPPV.  Hopefully yours will resolve sooner if it is an 'itis' (inflammation) but it took me many months to regain my balance and i too was crawling around on the floor sometimes.

    With time and experience i have started making improvement but there wasn't any medication or medical intervention that made any difference.  For me it was a matter of time and understanding. I agree with your doc, having seen all the ENT department and paid to see a consultant privately, it is an unknown but there is hope.  Hope you recover soon. Make sure you have some investigations done like an MRI just to rule out anything else.  Get well soon. 

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    • Posted

      Hello anne very pleased to meet you...... my doc has told me that the infection has gone. ....Unfortunately im left with vertigoe. ..... so its really one stage at a time ruling out different things...... im hopeful and keeping upbeat...xx
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  • Posted

    HiNicola Good to hear the initial condition is resolved, just a case of our balance centres catching up and re-learning that we don't need to keep over correcting our balance, think its called 'compensation'.

    I like to equate it to a computer and something on my hard drive's gone wonky and i need to shut down and reboot with a new way of finding my balance.  I try to look at a distant object when i' m walking as this has helped with my balance rather than focusing on the road directly in front of me.  I try not to look upwards too often or lift overhead cupboard doors.  I also think when my necks stiff it affects my balance too combined with other factors such as tiredness.

    I found i could wake up in the morning feeling reasonably OK but within a couple of hours it would all be back.  Really have had to learn to pace myself with little bursts followed by rest.  Keeping hydrated also helps, so plenty of water and cut back on caffeine.

    Stay positivesmile

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  • Posted

    hi nicola

    you're right about hitting like a ton of bricks. I'm from the U.S. and my insurance doesn't need a referral. so I was able to see an ENT my 2nd week of symptoms. my first week I was in the hospital for a few days and had every test imaginable done. I had an MRI, blood work and those came back normal. the neurologist thought it might be BPPV so he had another Dr.do the eppley manuever on me. it didn't work. the following week I seen the ENT and he did some tests including a test where they shoot warm then cold air into each ear. he said my right ear was left 67% uncompensated. I was already set up to meet with therapy the next day and when he did different balance tests he also determined that it was my right ear that was lacking. the therapy helped quite a bit. it helped with regaining my balance and  when you find your new center of balance then the dizziness should start to diminish. however that hasn't been entirely true for me. my balance is pretty good but I still get dizzy occasionally. it's been 4 1/2 months now and some days I don't even notice it and some days I'm like why? how? I wasn't dizzy yesterday. I have learned that you need to stay well hydrated, get enough sleep, try not to stress out and don't let anxiety creep in. even though it's difficult try to keep active and get out and about. every Dr. I've seen all told me that any anti-nausuea , dizzy medicine will only slow down the recovery and to try to venture out to the grocery store and busy places that will require you to look around.  how long does it last? I don't think anyone including Doctors know the answer. hope you recover soon.

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    • Posted

      Thanks crystal..... ill be referred to a specialist tommorow. ... taking it step by step now..... I think that ive finally accepted that its going to be a slow process      but I have to say that this forum helps greatly because I know that im not alone smile
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  • Posted

    Hi Nicola

    I totally understand what you are going through. I was diagnosed with VN about 5 years ago. This tends to come about from a virus or infection which comes along and then buggers off leaving unrepairable damage to your inner ear gubbins. Its a bit like losing an arm or a leg, we don’t grow new ones, so we have to learn to compensate with the rest of us.

    All the best

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    • Posted

      so true. when the ENT told me it was a virus that  had damaged my inner ear. my first question was "how long until the virus is gone and I return to normal?" he gave me the most pathetic sad look and said " the virus has already been there, did its damage and is long gone." so now it's up to my brain to recalculate my new center of balance. my first 2 months were the worst. I think what didn't help was I had this false sense that within a certain time frame I would suddenly be all better. i'm 4 1/2 months into and I have good days and bad days. how are you after 5 years?
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    • Posted

      I think I've just accepted I will never be 100% ever again.

      Recently I've had 2 mates that have had a major surgery. One had a problem with a gall bladder and one a problem with a lung and do you know what? I was bloody as jealous as hell. Both these people were unwell but they were quickly diagnosed and fixed. They are both better than they were before.

      We've got an invisible illness that isn't that well understood in UK and we just got to put up with it.

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    • Posted

      the Drs. don't do much for it in the U.S. either. granted I was diagnosed quickly and they quickly ruled out anything serious but  once I regained my balance at therapy that was it. I was given some at- home techniques to try but my balance was quite normal so there really wasn't anything else he could do. the ENT told me to continue the therapy, therapy told me to see the ENT so it really is passing the buck to someone else. and you're absolutely right on the invisible illness, I can't tell you how many times somebody has assumed I'm fine just because I'm sitting there. or people say "oh you're a blonde you've always been dizzy". unless you have it , it is really difficult to make someone understand how life altering it is. hang in there.
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  • Posted

    I am sorry to hear that. I hate to tell you it will be a year next month for me. I have the same feelings as you do. I have been walking again not by myself but I am up to 3 miles a day.  I seem to have more bad days than good lately but it will get better I hope. I am not sure if I have just learned to work within the haze or if it is getting better. I will tell you that the nausea is gone and I rarely get it now. I don't know anyone who has this vestibular neuritis but do have a friend with vertigo. I try to be thankful for the good things although some days are harder than others. I am 62 have been able to draw my SS but I was in a very good managment position. We as well have felt the crunch thank goodness my husband works part time. The university of Toronto in Canada has done some extensive research. They seem to think there may be a connection between vestibular issues and stress. They are of course doing more  research. I wish you luck it will get better!
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    • Posted

      Im 52 in a weeks time linda..... and thankyou so much for chatting....its a horrible thing to have

      by nature im impatient haha!!! But ive had to ccept that this might take some time....

      had a really bad day yesterday....feel a little clearer today....... smile

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