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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

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  • marc42645
    marc42645 cally_44573

    Posted

    Hi, you would not believe this story I have to tell.   My life of living hell started back toward the end of April.  I woke up one morning feeling like I had the flu.  I waited a few days and went to see my GP.  He did blood test, EKG because I was having heart palpitations, chest x-ray, checked my ears and passed it off as they didn't see anything.  I left and the palpitations got worse.  I ended up going to ER and they passed it off as being anxiety,  Here take some Xanax,  I went back to my GP and he started in on it being anxiety.  I walked out and said to myself FU I just don't wake up feeling like this and it continues.  I sought out another GP and after a few more ER visits he thought it was anxiety.  Finally for the ding dong GP a light went on and realized nausea and anxiety don't usually go together.  They sent me to a gastro doctor and by now we are 2 months into this nightmare of sickness.  Yip gastritis infection and he starts me on a protonix.  I kept complaining to the second GP about my ears bothering me and could he give me something.  Looks into my ears and doesn't see anything.  Oh no I can't prescribe anything.  It finally came to the point that I threatened suicide if I didn't get anything.  I mean really what the h**L  is wrong with physician's today.  So I strike out and went to an ENT doctor.  He looks in my ears and soesn't see anything.  I told him the weekend before coming in my left ear hurt.  Oh come back next week and do a hearing test.  I left and said to heck with you.  I told the gastro nurse practitioner about still feeling nausea and she asked me what I thought was causing it.  I told her my ears.  She prescibed Prednisone and that helped but didn't clear it up.  Fast forward a month later and I get into to another ENT doctor.  I wrote my second GP off.   I wouldn't have him for a vet.  They send me to do the hearing test.   Everything is okay.  Next up the VNG test.  Yip my left ear the same one that the gastro nurse practitioner saw pressure on the ear drum was it.   No fluid movement when they did the warm and cool air test.  This week I did the MRI and MRA.  I also found me a cash only doctor and they got me a prescription for amoxicilian.  The more I read hear mine sounds like VN now too.  All because the first so called medical doctor blew me off.  I am considering a law suit.  I mean really prescibing Xanax and not finding the problem.  I have some good days and bad days it seems like.  Next week I see the ENT doctor and talk to him about the test results.  Yip you bet I want those reports for my lawyer to have.   I just wonder how many posters here have the same feeling about medical care.  I am from the US and to me all they are interested in anymore is your insurance.   Why if I had went to my old family doctor like I had when I was young the first thing he would have hit you with would have been an antibiotic.  That's why I went to a cash only doctor.             

  • saloni77946
    saloni77946 cally_44573

    Posted

    Hi Cally, I am going thru the same, can you let me know, what all and how it got recovered, will it ever recover sad. I feel like crying all the time .

  • charlotte57794
    charlotte57794 cally_44573

    Posted

    Hi Cally,

    Just wondered if you could please tell me how your feeling now? smile I have VN and it is really is making living a normal life a struggle.

    Is there anything you did which you found made you recover quicker or better? I hope you are feeling much better!

    Charlotte smile

  • Stacy0624
    Stacy0624 cally_44573

    Posted

    I too suffer from VN but I'm about 85% better after 4 months. There are some great groups on face book

    • charlotte57794
      charlotte57794 Stacy0624

      Posted

      Hi Stacy,

      What have you been doing to see improvment? And what were your symptoms smile

    • Stacy0624
      Stacy0624 charlotte57794

      Posted

      I was dizzy 24/7 ..through VRT and anxiety meds I slowly got better. I always pushed myself to put myself in situations that made me dizzy that's the only way to retrain ur brain to fix itself. I would only take Valium when necessary because that's a vestibular suppressant and u shouldn't take that a lot. I did the VRT excersises 2 x a day that my therapist gave me. I also when and talked to someone about my anxiety and started reading feeling good by David burn and then once I started getting better I started a support group to help others smile I still have some recovery that I'm working on but I'm back to work full time finally.

    • Stacy0624
      Stacy0624

      Posted

      I meant to write that I was dizzy 24/7 for two months straight April 20th to June 20th...horrible!!!!!
    • charlotte57794
      charlotte57794 Stacy0624

      Posted

      im so glad your feeling better! I can't wsit to start feeling better which is hopefully sooner rather than later! Haha do you mind me asking how old you are? Thats lovely you set up a support group! Is it on facebook? Ill join smile im in need of support

      I hsve a bit of a silly question but would really appreciate some answers from another VN sufferer if thats ok smile

      Sometimed i have good hours and bad hours, good sleep and bad sleep but the dizzy spells sometimes hit just out of no where and i have no idea whats set it off! It scares me so much because its so unpredictable sad

      Did you get random bouts of dizziness too?

      Or did you find any foods that made it worse? Or around your menstrsl cycle or anything like that? Any advice you have would be greatly appreciated! smile

    • Stacy0624
      Stacy0624 charlotte57794

      Posted

      I don't have the dizziness that I used to it is now just an off feeling but that's more rare now as I'm getting better. I try to stay away from salty foods since they cause ear inflammation. .. you should also drink tons of water and I also take vitamins that they say help dizziness and vertigo like magnesium and b12. When I do feel some dizziness like symptoms I stay calm and they pass.. but I've noticed that swimming triggers my #1 symptom and that's the rocking and swaying feeling I get on and off... if that would go away I'd be about 97% better!

    • charlotte57794
      charlotte57794 Stacy0624

      Posted

      Oh i get that swayinh and rocking feeling too! Absolutly hate it, but i still dont know my triggerd it just comes and goes as it wants whick makes me anxiety so much worse.

      I wish i was 97% better sad you lucky thing, althought it has been 4 months for you so i still have a long way to go.

      Do you ever getvthe swaying at night time in bed? Or is that just me (its not all the time but sometimes)

    • Stacy0624
      Stacy0624 charlotte57794

      Posted

      Yup happens at night and in the morning too. I'm gonna do my VRT excersises 2 x now to try to fix that

    • charlotte57794
      charlotte57794 Stacy0624

      Posted

      What sort of exercises in particular can fix that? smile please? Im desperate to get rid of it, so debilitating! sad

      Feel free to message me if its easier smile

    • Stacy0624
      Stacy0624 charlotte57794

      Posted

      Have you gone toto a neurologist? He's the one who really helped ..the ent have no clue. VRT excersises like gaze...moving my head back and forth while looking at a fixed point. You tube them.

    • charlotte57794
      charlotte57794 Stacy0624

      Posted

      No i havent only ENT appointment coming up.

      Im from Australia ill have to look into the neurologist if my gp lets me! Haha

  • richard5146
    richard5146 cally_44573

    Posted

    Hi , Well this all started in 2008 with a virus of my inner ear. I got better after going to ma eye an ear in boston. But  it lasted 4 years  had it again in 2014,,,, an now in 2016. I feel unsteadiness with nausea when  i walk. My ears have pain  behind my ear on my neck. The last time I had this in 2014  it lasted 3 weeks. I was put on a high does of nortyipline up from my dose of 75 mg. Also  was put on prednisone 10mg for 6 day. After the 3 weeks   i felt better.....I feel for all u going thur this but in my case it did get  better...  i do some of the vertigo exercise as much as i can .But they do make u feel worse.....  Hopefully this last only 3 weeks again as   u get depressed when this hits....
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