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Vestibular Neuritis- any recovery stories?

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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

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  • janelle57186
    janelle57186 cally_44573

    Posted

    VN sucks I was in patient for four days and now on my 9th day at Spaulding rehab hospital in Boston. I feel like I'm going to throw up constantly so dizzy a little better at rest feel like I'm stranded on a boat se sick constantly rocking and when I walk people move up and down always like that trampoline effect. I have to tell you you need to see a vestibular therapist for Physical therapy, honestly it's hard but you have to keep at it and push yourself everyday. Somehow I'm learning to live with it. I also take meclazine for vestibular suppression helps with dizziness immensely and low dose of Valium to help with dizziness. Also take zofran and anit nausea med and zanaflez Bc my neck and shoulders are a wreck from constantly keeping focus straight ahead. It's hard when people pass around me totally throws me off balance. It's an everyday struggle and I feel like my life stopped last Tuesday as I know it but it's important to do the visual exercises and the therapy it's your only way out! Good luck

  • erin08782
    erin08782 cally_44573

    Posted

    Hi,  First I empathize with all who have posted.  It can be quite a frustrating and delibitating journey.  

    For me, I had symptoms over a year ago of feeling pulled to one side while walking.  I also experienced weird feelings in large department stores where I had to leave immediately and with that came anxiety.  When talking to people, it felt surreal like I was not on this planet!  It was such an uncomfortable feeling.  

    I have had positional vertigo in the past, but last May I was diagnosed with right lateral canal BPPV and bilateral nerve damage.  I went to an Otoneurologist for testing and vestibular rehab which helped immensely.  The bottom line is that you keep on moving and perform vestibular exercises.

    I was out of work for 3 months.  I couldn't even walk my dog.  At home, I felt "safe" but extremely lonely going through this experience. I credit vestibular rehab and your brain does compensate for the imbalance.

    I am back at work driving, shopping, running/exercising and continue to do normal activity.  I still have my "weird" moments where I feel I am off.  I'm definitley not 100%, but I hope in time I will be.  As my PT mentioned, there is no time frame but she encouraged me that I will get better.

    As for anxiety, that definitely came with my inner problems.  I don't take medication--only Dramamine on occasion when I felt like I was on a boat.  I'm getting ready to take my first plane trip tommorow after this inner ear bout.  I'm already anxious about it but I have my meclazine and will just breathe through it.

    Stay positive, and know that you will get better.  Vestibular rehab helped me trememdously.  I was told to make sure you keep it under 10 minutes 3x/day. Also, hydration, low salt is key!!

    Good luck...

    • janelle57186
      janelle57186 erin08782

      Posted

      Thank you so much for this it gives me a lot of hope. I am very active have 2 kids one who is 2 and 2 jobs. I'm in the acute stage of vestibular neuritis been in the hospital and now an acute rehab for 13 days. Just really down and out today and overwhelmed doesn't help I get a migraine everyday when I do the vision exercises. Trying to keep pushing myself though. Did anyone experience a sensitivity to daylight and feel like their ears were super sensitive to noise? So this ends....that's reassuring thank you so much for writing I'm relieved now. Phew!

    • erin08782
      erin08782 janelle57186

      Posted

      Wow, I am so sorry to hear you are in the hospital.  What are they doing for you in rehab?  I work in an acute rehab, but the PTs are not specialized in vestibular therapy.  

      I don't suffer from migraines, but hospital lighting really bothers me.  I did buy myself some Theraspecs glasses which are specialized for people who have migraines.  The glasses are about $100, but are worth it.  

      Yes, noises bother me when I'm having rough days.  This will get better.  I was able to attend a concert late summer and I was fine : )

      You are going to have really down days where you feel like you're never going to get better.  It sounds like you have a quite a case of VN to be in the hospital. The ear is so intricate--I wish there was an easy fix.  

      Try to stay positive and tell yourself that you will get better.  And as I have read on several sights, and have heard from PTs, you want to keep moving.

      I wish you a speedy recovery.  Keep me posted.  

    • Melmelski
      Melmelski erin08782

      Posted

      Hi Erin, how did your flight go? I will be flying next month and I'm a little nervous. Not sure how it will be. Did it trigger any spells for you?

    • Melmelski
      Melmelski janelle57186

      Posted

      Hang in there. You will get through this. Your children will be proud of your strength. It's slow but every day if you can go a little further with your rehab your brain will learn to adjust.

    • janelle57186
      janelle57186 Melmelski

      Posted

      Thank you I feel that way too they keep telling me that the therapy can make symptoms worse but to just keep it up and I will get there. Just feels like a slow going been in the hospital and rehab for close to three weeks. I have noticed a remarkable difference though! Thanks for your positive words and I'm not giving up I want my life back

  • jen60696
    jen60696 cally_44573

    Posted

    I know this is a really old post and I am not even sure if VN is what I have. I have been suffering with dizziness ( not room spinning but brain moving at different pace than head) for just over two months now. I have had an MRI and catscan and saw a neurologist but nothing untoward there. Now I am stuck in limbo as I don't even have a referral to anyone else yet and that takes ages. Besides the constant dizziness I also have plugged ears ( both), tight head and some headaches. It is hard to function at all.

    I am assuming that I either have VN or vestibular migraines. I have booked a private PT therapist for next week but not sure how else to help myself. It's so frustrating and disheartening...and the anxiety is terrible!!!! Help!!

    Jen

    • laura51775
      laura51775 jen60696

      Posted

      Hi Jen,

      I'm recovering from VN. Can you get into an ENT? They can get you in for balance testing and hopeful help with diagnosis and get started on vestibular rehab. I had to go on antidepressants for anxiety. It helped. Hang in there. You will feel better. Hugs.

    • jeffdal
      jeffdal jen60696

      Posted

      Sorry you feel so bad.  One thing I've noticed about the dizziness which should have been obvious is head movement. If I sit on a couch and don't move at all, and watch tv for instance, even if my eyes move, the dizziness moves to the background and is just barely active.  It's kind of lying in wait. I had an acoustic neuroma (which they probably checked you for with the MRI) and my vestibular nerve on one side is 95% gone.  

    • tamara54921
      tamara54921 jen60696

      Posted

      Hi Jen, I'm new to this site too.

      This all started for me in November 2015 I woke up with horffic spinning and was unaware at the time that it's best to move slowly or stay still until it passes! My daughter phoned for an ambulance because she was so concerned.

      I was told to rest and was prescribed stemetil, saw my dr in the following days when i was able to get there. Dr suspected viral infection and vertigo as a result.  The spinning eased and I tried to get back to normal this took time probably 2 weeks for the worst to ease but I was always aware of being unsteady and spinning continued although not as severe it has been present ever since, 9/10 visits to my dr and I was eventually referred to ENT with suspected BPPV in June last year, I had an MRI which came back clear and was given exercises to do at home and another appointment arranged for the Epley Manouvere.  Epley manouvre was used to determine that I no longer had BPPV and I was discharged but I still had spinning to a greater or lesser degree daily.  

      I am two weeks in from another severe bout of vertigo which caused me to fall whilst washing my hair.  I am back on stemetil and under investigation once more.  I cannot focus on much right now even typing this has had to be done in stages. I have a new more sympathetic dr who suspects chronic labyrinthitis or vestibular neritis and is referrring me to neurologist for further tests.  I have to say I wish I had come across this forum when this first started, the anxiety is very real, I'm on my own with two children which only adds to my anxiety.

      Just wanted you to know you are not alone!

      I am so grateful for this forum as I have been so scared that I am seriously ill and might not ever get better, people's experiences on here have given me hope that I can get through this.  I want my life back I feel like an 90 year old woman in a 42 year olds body right now... :-(

    • jen60696
      jen60696 tamara54921

      Posted

      Thanks Tamara,

      I am so sorry you are going through this. I haven't had any of the violent spinning you have but the 24/7 dizziness and nausea is hard to take for sure.....

  • jen60696
    jen60696 cally_44573

    Posted

    I went to an ENT at the very beginning and she was useless. She looked up my nose and said I don't have a sinus infection and then said to shake my head a few times a day. That was it. I am going to my doctor next week and will ask for a couple of referrals ( one to an ENT who specializes in vestibular stuff and one to a headache doctor)....I am going to start VRT regardless or at the very least do the assessment and see what she thinks.

    Yeah they said no tumours or spots or anything on MRI so it's not that. The only think is about VN is I can't tell what movements make me the dizziest so not sure if I have a bad side? I know I now sleep solely on my left so maybe subconsciously I think my right side is bad?

    • laura51775
      laura51775 jen60696

      Posted

      Brutal about the bad ENT. There should be a better one out there

      Yeah a good physio or OT that specializes in VRT should be able to narrow down the affected ear. A few have goggles that have a camera to see what your eyes are doing. I can tell you that mine was right ear, but VRT was just balanced, nothing special for right side (if that helps). I am dizzier when I turn or do anything to the left. So away from the affected ear.

  • jen60696
    jen60696 cally_44573

    Posted

    I seem to get dizzy regardless of which way I turn but when I lay my head down I definitely feel it not on the right.

    This truly is the worst.

    • jen60696
      jen60696

      Posted

      Sorry that should say more on the right....
    • jeffdal
      jeffdal jen60696

      Posted

      I never was able to tell which side the vestibular problem was on and never found an experiment or situation which gave a hint. I know that there are tests that tell the doctors by measuring electrical signals in the head and of course they operated on that side.  But nothing that I experience in terms of dizziness, balance, the way I walk eyes closed or open, direction I stumble occassionaly, or any movement gives me a clue. 
    • rebecca94014
      rebecca94014 jeffdal

      Posted

      jeffdal...I did all the testing for two days in Tampa at the Balance Center. I drift mainly to the right & or kinda backward. Most of the time when I fall over it is to the right. Did six weeks of therapy in Fort Myers & no help what so ever but they got all the visits in before they told me it wasn’t going to help. I was in denial for 2 years, still can’t believe this is what I have to accept. My husband wants me to try another Dr..👀 If I could just find something that would work on the  nauseated  sick feeling... would love to know what it is.

      Thanks, Rebecca.. 

    • biliarydyskines
      biliarydyskines rebecca94014

      Posted

      Rebecca - Do you got any other health issues like gatritis/gallstones /non working gall bladder or any indigestion issues?
    • biliarydyskines
      biliarydyskines rebecca94014

      Posted

      The reason for asking is i started getting these symptoms after i had severe bloating and indigestion issues. Hida scan showed my gallbladder is not working and gallstones. Better to rule out you dont have any indigestion issues like IBS or no gallstones or low functioning gall bladder.
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