1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Vestibular Neuritis- any recovery stories?

Posted , 157 users are following.

cally_44573
cally_44573

Hi, new poster here. Have been suffering with VN for 10 weeks. I was initially diagnosed with a gastro virus due to my main symptoms being dizziness, nausea and diarrhoea but after seeking private ENT consultant I was diagnosed with Vestibular neuronitis. I secretly suspected it was this but think I was in a bit of denial as all the stories on the Internet speak of long term chronic suffering and that terrifies the life out of me.

This condition is hell! I am dizzy and nauseous 95% of the time with lots of ear and head pressure. When I get really dizzy and sick I also get diarrhoea. I've lost a stone and a half in ten weeks as I can barely eat.  It even plagues me in my sleep with dizziness making me wake up and feel horrendous, until I get up and move about which eases it a little.  I have been off work since the start and need to return soon which seems impossible right now.

I have started seeing a physio and have been doing VRT exercises for a week which have made me feel much worse. I used to have the odd few hours where I felt okay but not in the last couple of weeks.  Can it get worse before it gets better?  Reading, writing, typing, watching TV all make me feel Worse too.  I feel like there is literally no pleasure in my life right now and I can't even get relief in my sleep.  I have two kids and have kept as a active as possible, caring for them and trying to keep life normal for them so I haven't been hiding away.  

I don't seem to have had the acute stage at the start which slowly improves, I've just been the same for about 8 weeks and worse for the last two.

im scared I'll,never get better. I would love to hear from anyone who did get better after this time, or at least improved enough to enjoy life again or who was able to return to work.  Did VRT help anyone out there and how long did it take for you to notice improvements? Sorry for all the questions! Any advice would be very welcome

Thanks

7 likes, 610 replies

610 Replies

Prev Next
  • ruth99954
    ruth99954 cally_44573

    Posted

    Hi There

    Have just found this thread and need to make some comment

    I have had VN for 35 years and believe it or not I have just been given my diagnosis last week

    I am 65 year of age and my first attack was at the age of 30.  I was immediately told I was suffering from anxiety and  treated. For t who years I went back and forward to docs with no results.  Eventually I gave up and spent the next 10 years trying.to cope.  Things did get a lot better but I still had off balance and eye coordination issues.   At the age of 40 I had a terrible flu virus which set the whole thing off again.   A different doctor examined me.  My feet reflexes were not right and he immediately referred me to a neurologist.     I saw him and he ordered a brain scan the next day

    He then said he had thought I had a brain tumour of my balance mechanism the good news was that it was not butc the bad news was that I had a scarring on the balance mechanism at the back of my ear.  It would improve with time but it could reoccur in 5 ,  10' 20 years time or never again

    I was never told it was VN.    Six weeks ago I had another vertigo attack could feel the fullness in my ear Nd my neck was in stress.  Back to docs, no records. Fobbed off.   I wrote him a letter of complete history and asked for my records from specialist. -  I thought I had MS.    6 weeks later still no information from him.   Made an appointment walked in and asked if I had MS.  He said no   What do I have?    You have VN.   Why did no one ever think to telf me.   Lots more information I have omitted. What I can say is you do recover, it may take a while but the more you know the quicker you deal with it.   The Anxiety is horrid ,   I will post later on things I have done but have to sign off now as too long on computer is not good

    One thing I will say is sit down and have a good cry makes you feel at bit better

    • nikki1978
      nikki1978 ruth99954

      Posted

      Hi Ruth,

      ​I think maybe they couldn't diagnose VN back in the 70s and 80s because maybe they didn't have the technology for the tests. 

      ​When you say you have scarring on the balance mechanism of the back ear, would that be the same as having unilateral weakness/loss?  I had the caloric testing to show the weakness, is that the same thing you had done?  That's when they put either water or air into your ears while you have goggles on and they watch for your eye movements.

      ​Do you also get that feeling where it feels like your not with reality and it's very scary.  Almost feels like you are going to die or lose consciousness.  That is so horrific to me.  Are you driving or on any meds?  I got this after a sinus infection.  I was 10 weeks post partum and it has been so disheartening not being able to do things with my little girl.

      ​Thanks for any info.

    • ruth99954
      ruth99954 nikki1978

      Posted

      Hi Nike. My first attack was when I was 29. And I had no help. Except youth on my side and things did eventually get better but I still had lots of stuff going on but with 2 small children at the time I had to up and go.   I was never fully recovered.   When I was 40 I caught a terrible flu that was going around. This was 1990.  Thanks to my doc who looked after me well sent me for ear test blood tests and so on.  Eventually as things got worse he sent me to a neurologist and lucky he was interested in this disorder.  He ordered me a brain scan the next day.  He then said he had good news and bad news.  Good news it wasn't a tumour. Bad news it was a scaring on the nerve at the back of the ear. Thing would get better but at that time medication was strong.  He gave me pills but had a mini fit and did not take them again.  He said it might or might not come back. There was no money for research but he was gathering information.  He was very nice and assured me everything I was feeling was from my ear. Forgot to say he did also do lots of tests.   I then had to try again.  I have for the past 25 years still had problems but I was riding a bike, decorating, gardening, dancing, yoga.  Now it is back again , my doctors would not believe me as my records were lost.  I eventually wrote him a letter giving him the information of my journey as they wanted to tell me it was anxiety.  They eventually got the records from the neurologist and told me I had vn.  I have those feelings. My anxiety level in a morning is scary,  I feel my neck will no longer hold my head up.  What I do not understand is why all this can stop in minutes and I feel near normal. I suddenly stand up and it has nearly all gone.  Unfortunately it comes back. I do get very depressed dealing with it and it fuels the anxiety feelings.  I am now going to try a small does of amitriptyline as it is supposed to relax your muscles.  Thing is I sleep like a log without them. Yes I feel as though I am going to pass out as the head pressure increases.  When there was thunder I suffered terribly.   I feel as though I have rounded soles on my shoes when walking.  Has your doc given you any information
    • nikki1978
      nikki1978 Terry6872737

      Posted

      Hi,

      ​Yes, since March 2012.  Right after getting over a sinus infection.

    • nikki1978
      nikki1978 ruth99954

      Posted

      They could see the scarring on the ear nerve with MRI?  I was told that VN could not be diagnosed with an MRI.  It's strange, so many different doctors around the world and all seem to have different ways of treating. 

      ​Did you ever check to see about something called superior canal dehiscence?  The sounds affect it badly too.  I thought of this when you mentioned about thunder.

      ​Did you try vestibular rehabilitation therapy?

    • nikki1978
      nikki1978 Terry6872737

      Posted

      Yes, he put me on klonopin.  It doesn't seem to have helped much.  I am going to be insisting on checking for SCDS (superior canal dehiscence syndrome).
    • Terry6872737
      Terry6872737 nikki1978

      Posted

      Klonopin, as you probably know, is a benzodiazepine and most of what I have read indicates that it is not recommended for long term vestibular issues. What I read is that an SSRI is a better drug for treatment. Very interested in what you find out on the SCDS. Please let us know.
    • ruth99954
      ruth99954 nikki1978

      Posted

      Hi nikki

      had a ct scan not a Mri.  Remember this was 25 years ago.  My Neurologist then was interested in researching this but no money was available. If you look further into this you will see very little research has been done until the last5 years. So I reckon he knew quite a bit about this condition , also back then they did not even have a name for it. Have had two bad days but I am having a good morning learning not to do too much .  Trying to give my brain time to take in movement information.  Am going to try to find vrt exercises in web.  By the way  it was not the noise I was referring to but atmospheric pressure.  Last time I has this I could predict a bad storm coming an hour ahead.  Most doctors seem unaware of this condition .

    • nikki1978
      nikki1978 ruth99954

      Posted

      Hi Ruth,

      ​Do you get that feeling where things seem far away, almost like derealization I think would be the term.  It's almost like a very bad lightheaded experience where you feel like you are going to die or pass out.  It's hard to think and it extremely disorienting.

      ​Do you get more dizzy or brain fog with the pressure?

      ​Have you been able to be on a plane ride?

      I'm hoping in another 10 years maybe they'll have a fix for us.  :D

      ​Thanks for the info.  Hope you feel better.

      ​

    • ruth99954
      ruth99954 nikki1978

      Posted

      Oh yes.  Terrible feeling, this is when I think I can't take anymore. Never know how long that will last could be an hour could be 8 hours and then suddenly it is gone, seems as though my head is completely clear.  Sometimes think it is coming from my neck.  From my first attack plane journeys were not good as I would get a lot of pain in my ear and disorientated, as years went on much easier  always chewed gum or sweets and used pressure ear plugs.  I have been taking 5ml of amitriptyline since Monday night and I think it has helped but time will tell  hopefully someone will find a quick and easy cure
  • ruth99954
    ruth99954 cally_44573

    Posted

    Ok  good day just gone. Was sitting on armchair leaned over to the left and down to stroke the cat and dizziness back along with neck and anxiety and very wobbly walk. Has this happened to anyone else.   Who does epley manoevre themselves.  Tried it about 4 weeks and could not move around for 2 days. Made mer extremely anxious  it felt as though I was being thrown around in a barrel.  What experiences do youhave
  • olivia52399
    olivia52399 cally_44573

    Posted

    Hi cally! Fellow VN sufferer here. I'm wondering if you wouldn't mind updating the thread to let us know how your condition is doing. I'm also going to post about my current state, in case any of you have feedback/advice:

    I began demonstrating symptoms of a vestibular disorder about 3 years ago. After months of no answers and progressively worsening symptoms, I found an ENT who pointed me to a vestibular rehab therapist. After weeks of VRT, I finally began to feel normal again. From then until now, I have had bouts of symptoms (usually triggered by exhaustion/stress), but have been able to sleep off these symptoms within 2/3 days. About a week ago, I began to have a serious flare up of symptoms - and this time I can tell that I will not be able to sleep these off. Here's a general timeline and list of my symptoms:

    - At first, I started to feel like I was on a magic carpet ride whenever I closed my eyes.

    - Around this time, I began feeling like my upper body was being gently pushed forward by a wave.

    - After 3 days of these symptoms, I saw my therapist. She gave me exercises. For the past couple mornings, I have woken up feeling a little better and then getting worse and worse as the week progresses

    - Today, I had the terribly familiar feeling of being pulled down to the ground by my lower back. Sometimes it feels like I'm being pulled in different directions, sometimes up and sometimes to the side. It's really a horrible feeling.

    I know that for many of us, VRT makes symptoms worse before they get better. My therapist is away on vacation for the next week, and I'm wondering if I should continue with the exercises she gave me. I just really really don't want them to get worse. Have any of you experienced a similar progression of symptoms? Would you keep up your therapy if your symptoms continued to get so much worse? I don't want to OVER over compensate. Any advice would be MUCH appreciated. It's hard to stay positive with vestibular issues, to say the least.

    • charlotte57794
      charlotte57794 olivia52399

      Posted

      HI Olivia,

      How are you feeling now? I am too a VN. Sufferer and it is so hard to stay positive sad

      Have you found anything that helps you?

      After i have had a bad dizzy spell i only find resting to be helpful but apart from that i have no idea what my triggers are and tend to have headaches quite often sad with or without dizziness

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.