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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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610 Replies

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  • katie60686
    katie60686 cally_44573

    Posted

    Hi everyone!  I am so glad that I found this thread because I have finally found people that understand what I am going through and I am happy to hear positvie outcomes.  I have been dealing with my vestibular problem for four months now.  It all started from a cold that I had.  I can't believe that a cold could do so much damage.  I have had symptoms of swaying and disequilibrium since then.  I also have problems with a brain fog and blurry vision.  This really is the hardest thing that I have ever been through.  I started vestibular therapy about five weeks ago and I have seen an improvement.  I am finally feeling hopeful that this will go away.  I thought my life as I knew it was over.  Recently my symptoms have become less severe and not lasting as long.  I just hope that with time this will completely go away.  Try to stay positve everyone!   Things do get better.
    • schmoopee98
      schmoopee98 katie60686

      Posted

      Hello Katie,

      I'm new here, and have been experiencing symptoms for 6 weekstoday.  I have an ENT and a neurologist appt the end of April, but I went ahead to a Physical Therapist today, and she mention Vestibular Neuritis.  I googled it and found this forum.  How are you feeling today?  I really need to know that I will recover from this as I have 2 small boys.  I feel for everyone that has posted on this forum.   It is truly debilitating!  

  • emmy30
    emmy30 cally_44573

    Posted

    Hi all,

    I have never posted in a forum beforebefore but I really need to speak to people with a similar problem to me. Also please excuse any spelling mistakes.

    I never had a issue with migraines and i sisnt even know what vertugo was untill march this year. I had vertigo for about five weeks in march i had ny ears syringed as they were seriously blocked and it went away.

    I was so happy then about a month latter it hit ne again but this time is waa different.....i dont get the spinning its more of a wave/shaking ground feeling.

    I was digonised with Vestibular migraine but wasnt really given anything more. I was just told to look at trees and make life style changes.

    Since this began I have been off work a total for ten weeks. I have tried so many tablets that hadn't worked. Two weeks ago I was given amitriptyline and I was so happy as they seem to be working. I went back to work then on Friday I had about five vertigo attacks they were the worse I had. My manager had to drive me home.

    All weekend I have felt so I'll....does anyone else feel week and exhausted for days afer.

    Also I have a real problem with patterns and lines...its so hard to explain to people but it really messes me up and makes me wobbley.

    I am so scared that this is my life now...I don't think I can cope with this much longer.

    Also what other symptoms do you all get?

    • Terry6872737
      Terry6872737 emmy30

      Posted

      Do you continue to have rotational vertigo?  What tests have you had and have you had your ears exmined at all?  If you still have rotational vertigo are the episodes brought on by certain head movements?
    • emmy30
      emmy30 Terry6872737

      Posted

      Hi terry thank you for your reply.

      I had my hearing tested...they didn't tell me if there was a issue. They also did alot of shaking me about and twisting my head.

      It was after this I was told it was vestibular migraines.

      I have just had to call in sick again as I still feel bad from Fridays attack.

      I don't get rotational vertigo, its more like a on a boat feeling.

      I get motion sickness now as well and if I look at lines or patterns it makes me feel sick.

      I am actually scared to go to work after what happened Friday.

    • debora59596
      debora59596 emmy30

      Posted

      The patterns and lines are called "aura". Have you seen a neurologist yet, has a doctor gone over your medications with you to see if any contribute to your migraines? Estrogen can contribute as well as other medications and foods. If this doesn't let up and you continue to be unable to work you may need to apply for disability until you can find relief.
    • dee50000
      dee50000 Terry6872737

      Posted

      Excuse me butting in, but I used to have left-ear problems, verified by leftbeat nystagmus, then, right (continued having problems with left). Right went away with some Epley maneuvers, but still have left. And last week I started having downbeat nystagmus when I put my head down (as if loooking at something near floor-level). I also have downbeat when I tilt my head back! I wonder what canals might be involved.
  • katie60686
    katie60686 cally_44573

    Posted

    Hi Cally or Terry, just checking in to see how you are coming along.  I was getting optimistic because I was having a few good days and thought it was going to be the end.  However, I am a little disheartened today because today was not as good.  I hate to be pessimistic but just need some positvity and to hear that people do get better from this.  I am six months in now.  I am trying to look on the bright side because I know I am better than I was even a month ago.  I am doing the VRT exercises and they seem to help a lot.  I just get anxious at times when I worry that I may feel like this forever.  Just trying to be positive.

     

    • Terry6872737
      Terry6872737 katie60686

      Posted

      Hi Katie,

      Yes I am getting better.  Actually, I feel near 100% recovered most days.  There are days that I do not feel as good as others but, I believe that it is related to the amount of time that I have struggled with this condition that makes me think that it is still part of the VN.  I remember these kind of days before I had VN and I just shrugged them off.  Over the course of 15 months I saw up and downs but, the downs got shorter and shorter as time went by.  I think that when we have a mild set back it makes us feel like we are not getting better but, when you look at if for the course of time I think that you will see, as you have stated, that you actually are.

      There is light at the end of the tunnel and you will see better days.  Keep up the VRT as I think that even with the minor setbacks that is what gets things back on track again.

      The anxiety will try to take things back over.  Just look how far you have come!! 

    • christine15200
      christine15200 katie60686

      Posted

      Hi Katie. I'm new on here. I found this site only this weekend after googling my symptoms for a few weeks. I was beginning to get quite despondent about my slow recovery so it was heartening (or depressing!) to hear that other people are in the same boat. I had my first attack of VN eight months ago after a particularly lengthy and bad cold and cough.The room suddenly began spinning and I fell back onto my bed. I have never felt so nauseous in my life. I thought I was never going to stop being sick. The doctor gave me some anti sickness tablets and I stopped feeling sick after taking three of them. The dizziness and spinning sensations lasted about a week. I seemed to return to normal after that. Two months ago I had a bad throat infection and lost my voice for a couple of days. A day later I was back to square one; room spinning around me, feeling sick, no appetite, unable to get out of bed for over a week. I am now better than I was but nowhere near back to where I want to be. I feel permanently exhausted, have lost over half a stone in weight, can't sleep well, have no energy, feel lightheaded or dizzy most of the time and am thoroughly fed up. I have tinnitus in my right ear, which I never had before. It is a bit like a chugging sound which reminds me of a petrol lawn mower. I have it for some parts of the day but, as always, seems worse at night when it stops me sleeping. I can't face shopping (which I used to love). I feel weak,frightened and suddenly very tired almost as soon as I enter a large store. The assault on my senses is just too much and I have to get out. I, too, am depressed about how long it is taking to recover but after reading these blogs, am beginning to realise I might have a very long journey ahead of me! Good luck to you all.
  • fasthorse
    fasthorse cally_44573

    Posted

    Hi Cally. Prayer for all to recover. My first bout with dizziness was 6 months ago. (about the same time as your first post.) Dr. said vestibular tube wasn't moving in one ear, and to use a neti pot to clear sinuses. I used a bulb syring of salt and soda water instead, and the dizziness left immediately..Last week i was on the inversion table, and when i disengaged, I nearly went to the floor with dizziness..slept on carpet for the better part of 2 days, and am still having residual dizziness, but can function. The sinus rinse still seems to help, and I hope it will aid you and anyone else who suffers this problem. Today a friend gave me two exercises, and these also abetted..Geraldine's post is encouraging!
  • debora59596
    debora59596 cally_44573

    Posted

    Greetings, I last posted a few months ago and said I would post again after seeing a vestibular specialist, Dr. Carol Foster, in Denver. Quick look back: I had an acute attach of Vestibular Neuitis around Thanksgiving 2013. Update: On April 30, 2015, I had my first day of a little relief from 100% feeling of imbalance during waking hours. Now I do not feel imbalanced when I am perfectly still. I had a range of tests at Dr. Carol's office and met with her a few days later. She says I have lost 56% of my balance on the left side, which is a moderate loss. I continue to be plagued with BBPV on the right side, so it's a double whammy. Dr. Carol says that the sedatives I take at night, Trazodone and Lorazepam (Ativan) must be stopped completely, because they have hindered compensation. I stopped the Ativan for the most part before seeing Dr. Foster. She says it's most important to stop the Trazodone because side effects that I have been blaming on anxiety are due to the Trazodone. Side effects such as a tight jaw and neck, feeling generally weird, trouble speaking and having a hard time picking up my feet. I have decades of history of trouble sleeping and believe me, not getting enough sleep also makes me feel weird. I spoke to my meds. doctor and he says I should taper the Trazedone very slowly, one quarter of a pill every two weeks ~ or longer. He recommends Cognitive Behavior Therapy, which I will try if I can afford it. It's an eight session treatment in Boulder, Co. In the mean time I bought a Sleep Shepherd cap, which is a new biofeedback device you wear to bed. Hopefully that will work.  I'll let you know my progess with the imbalance as I stop the medications and do the rehab exercises Dr. Foster instruced me to do at home several times a day.   BTW, possibly the following hasn't been addressed in this blog:  People who are really dizzy / imbalanced need to use a walker or a cane or walking poles!!!  I used a walker for the first couple of months after I came down with VN, then when I felt a little better and started 15 session of vestibular therapy in 2014, the therapist immediately told me that I should not leave home without a cane.  Now, I am able to do two miles of walking with my walking poles. They help so much. When I go through an airport or go anywhere that involves a lot of walking or might make me anxious, I use my walking poles.  Good luck fellow sufferers! My good news is that Dr. Foster told me there is no reason my brain will not fully compensate after the meds are discontinued and I work with the rehab exercises she gave me. I will check in with you in another few months.
    • Thequeensguy
      Thequeensguy Terry6872737

      Posted

      Hi Terry, or fellow sufferers smile who ever can help and find this helpful.

      (Pardon my grammar and anxious writings below)

      I read most of your helpful replies to all that are suffering from VN. I was recently told that i have VN and everything lines up. I am 28 yrs old (160llbs,5 foot 8) and was fairly very active before. I live in Queens NY and work in manhattan (very crowded area). I have thousands of questions for you as sometimes i freak out thinking about this issue. Since my diagnosis by Neuro. I feel i improved a lot. I can now walk fast, look left and right for traffic, sit up and down and few more things easily without much trouble. I am about to hit my 2nd month soon. I am currently drinking lot of water, and doing in home VRT and many different movements as well. Last couple of weeks i was mostly feeling fine emotionally then again i felt anxious about this for last two days. A part of me feels i am improving fast b/c i am challenging myself to walk into crowds and making left and rights while i walk through downtown manhattan etc. I feel that has really helped me a lot. Being from NYC, you pretty much have no choice but to take Subway, buses walk miles and go to work in the most crowded place. Though, i feel i am much better then i was before i have few questions.

      Some bad days and some good - do you know why that happens and what can trigger it? Could it be that i am doing VRT and i feel very little dizzy right after but mostly feel better afterwards.The day after doing VRT, could i possibly have a bad day? It is not like i am feeling the worst right after VRT. It could be when i am in office the day after going out for lunch or during office hours i can be feeling a bit tipsy/shaky. (all involves walking or doing slow movements like washing hands in the sink)

      Also, could air pressure play a factor?

      My 1st month with this, i remember it rained real heavy and boy i will never forget what i experienced. Then, when it drizzled or rained couple of weeks later .. i was not affected as much at all. Could it be b/c the first time it troubles to only not let the next time be as horrible?

      Walking in the dark seemed to bother me in the beginning but now that has almost gone away.

      Feeling tired made me see rockiness, which i also believe has gotten better over time.

      though i dropped a few pounds but it did help me to feel better as acid re-flux really did not help i feel. Also my eyes are not as tired as used to be in the beginning.

      Someone else said Red Wine helped and i truly believe it did help me as well. During this period i felt normal like i did once but for short period of time/few hours, is that normal??

      I feel tightness around the neck area usually the dat after VRT or when i look down while i feel the movement in my body. I am wondering if my brain is being re trained in every little changes in my life like for example if got less hours of sleep and tired/watching tv for a long time/walking long time etc. While it is training it, i am having bad days as those little details can be new to the brain?

      Overall, i am trying to positive thinking that i have come from horrible place to this and feeling hopefull but a few bad days throws me right back to feeling/qusestioning this sad

      i just wish i can get back on the treadmill again and lift weight or have my life back fully sad

      One major issue, i am having is when i put my head facing down on a table and reading or lets say writing something. It makes me feel this discomfort which i had before way worse but still sort of there. Could this be worse after taken Nasal Spray, which intended to stop.

      A little background, i have never had anxiety, panic, insomnia etc attacks prior this issue and i was fairly healthy and happy.

      -Sham

       

    • Thequeensguy
      Thequeensguy debora59596

      Posted

      Hi Debora,

      That is such a relief to hear. Btw, i am 28 yrs old, will i need to use a cane you think? I walk fine except feel well used to be total drunkish but now much better but here and there a little bit shaky/tiny bit though. (on a bad day)

      Thanks so much

      Sham

    • vanessa1177
      vanessa1177 Thequeensguy

      Posted

      Find a Otoneurologist in your state. you may have to wait for an appointment but its well worth it. They have all the tests they need to properly diagnose you and tell you what you need to do either Vestibular rehab therapy or Therapy for BPPV.  you dont have to suffer like this. I went to the Chicago Dizziness Center but that's because I live in Chicago. I'm sure you can find a practice in your area.  How are you doing so far?
    • david2503
      david2503 debora59596

      Posted

      Debora,

      Give us an update on your progress. My wife is just about 5 months in and she and I both need reassurance that this will get better. Hope you are feeling g better

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