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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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  • cally_44573
    cally_44573

    Posted

    Hi all, sorry to hear you are all suffering from this hideous condition. I can however add that I am improving! Slowly but surely with relapses and bad days along the way.

    I am managing most things and working full time. TV, iPads and computers still give me the worst dizziness symtoms but I try to factor them in as part of my 'therapy'

    I have given up on the medical profession and agree that ENTs are a waste of time. I do not have access to an otologist so manage it myself with support from fellow sufferers - mainly Terry, who had helped so much.

    I take Stugeron (cinnarizine) if I feel nauseous or for travelling, do my VRT exercises and stay active as much as possible . Sitting still is still an issue, particularly to watch TV but I do adjust over an hour or so, so can enjoy films again.

    My appetite has returned and have regained half of the 20lbs I lost. My nsusea is minimal now but I have been left with intermittent bouts of diarrhea ( gastro consultant thinks initial virus has left me with some sort of IBS-I think I just have a nervous type tummy)

    I follow a low sodium diet and stay well hydrated . I avoided alcohol initially but have begun to have the odd glass of red wine and dare I say I find it helps!! Wouldnt over do it though, I literally mean a max of two small glasses.

    Importantly, I AM getting there, just frustratingly slowly.

    I AM reclaiming my life through dogged persistence and keep doing all the things that make me feel horrible (those giant supermarkets, traveling etc) I do get those anxious I'm going to pass out sensations but not as often and I just sit them out, knowing they will pass. I refuse to give in to them. Everytime I overcome one of these attacks or activities I feel stronger, like I will recover.

    Keep going, look after yourself and don't give in to it , it will get better eventually but you must keep challenging yourself .

    • anne86317
      anne86317 cally_44573

      Posted

      Glad to hear you are on the mend ,as am I and I commend you for reclaiming your life ! 

      My appetite is better too and I,m managing to hold my own with weight ...hoping that the great food ( and the fact that I don,t have to prepare it !) in Europe will tempt tme to eat and regain strength ...something that has taken a real beating between the VN and the awful winter that we have suffered thru !

      I still get very tired and find it hard to sleep but am hoping that just watching the ocean from our ship balconey will help loosen all the tension that I carry .

      I do know that being on a boat is actually very non distressing for people with VN and at least I kknow that when I am on shore, I have my husband to hang onto if need be ! Just think I may have to avaoid the grand Bazar in Turkey ...that may be way too much stimulation ...too bad ...I love to browse and shop ...oh well ...just going to have a little more money in my pocket I guess !

      Will keep you posted ...need to get thru the upcoming wedding first ...fortunately , a quiet affair and I,m the mother of the groom ...amen to that .  Keep positive all us "dizzies " ! Good to know there are others out there who totally understand this wretched disease ....at least it can,t kill us ! 

      have a great day !

       

    • cally_44573
      cally_44573 anne86317

      Posted

      Glad you are looking forward to your trip- it sounds amazing! Good luck with the wedding too. I have sons too and I'm glad I'll be missing out on all the future wedding drama that must come with having girls! Guess I'm just not a weddingy type person!

      When it's over you'll be proud that you got through another challenge and ..... You might feel a bit ropey but like you say you won't die. Take care

    • jimmy97411
      jimmy97411 cally_44573

      Posted

      Cally I really like your words. I got the similar post-Vertigo dizzy, fatigue, passing out feeling quite often. And I still don't have interest in food, therefore don't gain weight. But I will follow your foot steps refusing to give in to the disease, don't want to  know what the hell it is now or will be: Vertigo or anxiety or insomnia. The more I study my symptoms, the more anxious I could be.
    • cally_44573
      cally_44573 jimmy97411

      Posted

      Thanks Jimmy, I think the only stuff you should be reading is posts form people who have recovered or are recovering - however those people don't tend to post as much! It is worth you keeping your appointment and trying to get a diagnosis at least.  I really hope you get your appetite back soon as I'm sure this will speed up your recovery and help you feel like you are on the mend. Take care and keep us updated if you get any answers .
  • anne86317
    anne86317 cally_44573

    Posted

    Hi Cally , you sound like such a positive person ! Great to know you are there ! I,ve had a goood couple of days now ...no nausea or anxiety ...amen and its a beautiful spring day ...which is great but makes me want to get crackin and do all the things I need to do and haven,t done in forever !

     

    I would like to know if there is anyone still having issues with fatigue ! Unlike anything I,ve ever had and I,m into month 3 ! I also have an enlarged lymph node on the side of the affected ear that just won,t quit and go away ...my GP says my throat is fine ( though it feels sore ) and that the node is the body,s fight or flight response and will take time to disappear ...anyway , just wondering what others have done ...need to be prepped and primed for our trip !!! PS dizziness sooo much improved ...still find my eyes get "dim " when I,m tired 

    Off to shovel more snow from my garden to see if I can coax any crocuses out of hiding ..HA !

     

    • jimmy97411
      jimmy97411 anne86317

      Posted

      Yes, I am having it now, GP believe it is from anxiety. Sometimes if I am distracted , may have a temporary relief.
    • Terry6872737
      Terry6872737 anne86317

      Posted

      Anne,

      As I mentioned earlier, I am 13 months in dealing with recovery from VN. From my experience, as long as you have the dizzy feelings and as long as you have visual issues dealing with environments, you will have issues with the fatigue. This condition takes a toll daily on the brain trying to keep up with all of the mixed signals that it is having to process. The lymph node seems like it would be more of a concern than your GP indicates. However, with your medical background I'm sure that you are up on any concerns that it should register. One thing that I am considering is having a lymphatic massage. A therapist nearby offers them and reading the information on the Internet speaks to the success in fostering drainage of excess fluid from the tissue.

    • anne86317
      anne86317 Terry6872737

      Posted

      Interesting thought Terry ...I may look into it when I am back from my trip ..I am going to have bloodwork next week just to reassure myself before I go ...thanks for the idea ! 
    • anne86317
      anne86317 jimmy97411

      Posted

      Hi Jimmy ...do you mean you have the fatigue or the throat issue ? I am also a diabetic and  really struggled on my evening walk tonite ( back to walking 2 x day ) but alas my sugar had dropped too low ...lord this is what aging gracefully means ? 
    • jimmy97411
      jimmy97411 anne86317

      Posted

      I got fatigue actually. My sugar level is ok. I feel sleepy and not energetic. Doctor gave some tablets to control it.
  • sarahbia
    sarahbia cally_44573

    Posted

    I've been suffering from vestibular neuritis since January and it is driving me insane! I was originally diagnosed with labrynthitis and told by my GP that it would be gone within a couple of weeks. I ended up seeing him four times over a six week period and every time I saw him he told me it would be gone within a couple more weeks. He is now saying it could last for a couple more months, which is causing me a great deal of concern because it is a horrible experience. In the beginning it was absolutely awful, I felt like I was spinning backwards pretty much constantly, along with nausea, dizziness and pressure in my head and ears. I couldn't stand up straight, had to avoid moving my head as much as possible and fell over a few times. At times I was seeing double and I am still finding reading uncomfortable. I'm having good and bad days now, I feel so tired and lethargic all time time and while the vertigo seems to have stopped I still feel nauseous all the time and I have occasional dizzy spells. I suppose it's a bit like having drank too much and also having the worst hangover ever at the same time. I just don't feel like myself at all. I have a constant pressure in my head and I just feel very odd. I am also feeling sooo anxious all the time. I am supposed to be graduating this year, but I have now missed pretty much a whole semester of classes and I won't be graduating until Christmas now. I still have to submit essays though and I am finding it impossible to do them, which is intensifying the anxiety. I feel as though I can't think clearly and reading seems difficult. I just want to feel better! I've been waiting for an ENT appointment for over a month now and I'm getting very frustrated. I'd like to hear that it does get better, and if anyone has any tips to deal with the symptoms they would be much appreciated. I feel as though I am going crazy! I can't believe an ear infection can cause so many problems. I am also very annoyed that it has taken so long to get an ENT appointment. Does the rehabilitation actually work?
    • Terry6872737
      Terry6872737 sarahbia

      Posted

      It does get better but, the sad thing is that no one will be able to tell you how long it will take.  The Otologist that I see told me that "it takes as long as it takes".  The vestibular rehabilitation therapy, VRT, will help to recover.  First there are other things that need to be checked to ensure what you are actually dealing with.  Labrynthitis involves the symptoms that you describe but, also includes an impact on hearing.  The impact may be temporary but, is present at some point.  Vestibular Neuritis causes the same symptoms without the impact on hearing.  There are several other conditions that also cause the symptoms that you are experiencing.  From my experience, and others on this forum, an ENT visit is a waste of time, unless you are fortunate to find a very good one.  If it is a vestibular problem the best doctor to see is a Neurotologist or Otologist.  They specialize in inner ear issues.  The first thing that should have been done, in my opinion, was an MRI.  That will rule out several possibilities.  Chances are that you will find that you have Vestibular Neuritis, VN.  Recovery can take several months.  My issues began March 2014 and I am still in the recovery phase.  The bad symptoms took 6 or 7 months to resolve for me.  Would your GP refer you to a physical therapist for VRT?

      When mine first began I had problems concentrating as well and got easily frustrated when pressed to get something done in a time frame.  The first suggestion that I would make is to see about the VRT, start a low sodium diet, 2000 mg or less each day, stay hydrated and try to find ways to reduce the stressful situations.  Stress will definitely make it worse. 

    • anne86317
      anne86317 sarahbia

      Posted

      Hi there sarahbia....so sorry to hear of your suffering and believe me I mean suffering ..mine started in January as well and I have pretty much lost 3 months of living ....your stress level seems so high right now , with essays etc and no wonder your anxiety is so high ....firstly ,it will not kill you though I am sure, like me ,there were times I wish it would ...deep breathing and visualisation helped me but there are anxiolytics as well for short term relief . I haven,t been reading either and though I love to knit , that too is a no go at the moment .

      can you discuss any of this with your professors to see if they can cut you some slack ? Unfortunately ,not many people (MD

      i too have not been "formally " diagnosed ...my ent wait is 6 months ...but i do have an awesome physio whose speciality is vestibular disorders and with accupuncture and vrt , i really feel i am slowly but surely on the mend 

      my nausea is improved but i do have weight to regain and can,t seem to do it quite yet ...hopeful an upcoming cruise will fix that 

      please please find a physio like mine , start vrt asap and i truly believe you will be on the mend .you sound young ...you should do well ...best wishes and just know there are a whole bunch of us "dizzies " around ...keep us posted  included="" )="" can="" really="" truly="" understand="" how="" truly="" awful="" this="" disease="" is="" .="" i="" too="" have="" not="" been="" "formally="" "="" diagnosed="" ...my="" ent="" wait="" is="" 6="" months="" ...but="" i="" do="" have="" an="" awesome="" physio="" whose="" speciality="" is="" vestibular="" disorders="" and="" with="" accupuncture="" and="" vrt="" ,="" i="" really="" feel="" i="" am="" slowly="" but="" surely="" on="" the="" mend ="" my="" nausea="" is="" improved="" but="" i="" do="" have="" weight="" to="" regain="" and="" can,t="" seem="" to="" do="" it="" quite="" yet="" ...hopeful="" an="" upcoming="" cruise="" will="" fix="" that ="" please="" please="" find="" a="" physio="" like="" mine="" ,="" start="" vrt="" asap="" and="" i="" truly="" believe="" you="" will="" be="" on="" the="" mend="" .you="" sound="" young="" ...you="" should="" do="" well="" ...best="" wishes="" and="" just="" know="" there="" are="" a="" whole="" bunch="" of="" us="" "dizzies="" "="" around="" ...keep="" us="">

      i too have not been "formally " diagnosed ...my ent wait is 6 months ...but i do have an awesome physio whose speciality is vestibular disorders and with accupuncture and vrt , i really feel i am slowly but surely on the mend 

      my nausea is improved but i do have weight to regain and can,t seem to do it quite yet ...hopeful an upcoming cruise will fix that 

      please please find a physio like mine , start vrt asap and i truly believe you will be on the mend .you sound young ...you should do well ...best wishes and just know there are a whole bunch of us "dizzies " around ...keep us posted >

    • sarahbia
      sarahbia Terry6872737

      Posted

      Thanks Terry. I am definitely trying to avoid stress, because you are right, it does make things a lot worse. I finally saw an ENT consultant and have been diagnosed as suffering from uncompensated vestibular neuritis, vestibular migraines and post-concussion syndrome. Apparently my hearing is fine. I've been referred on for VRT, but apparently the waiting list is 4-6 weeks, which is ridiculous. I can't wait to start VRT, hopefully I will finally be able to get rid of this!
    • sarahbia
      sarahbia anne86317

      Posted

      Thanks Anne. I've been given extensions for my essays and I'll be sitting my exams in August instead of June, which definitely helps although I still haven't managed to meet the extensions for my essays, but I am hoping that the university will be understanding of my situation.

      I can't wait to start VRT! I saw an ENT consultant yesterday and was finally diagnosed with uncompensated vestibular neuritis, vestibular migraines and post-concussion syndrome. I actually feel a little better now as I had started to feel as though perhaps I was exagerating and I couldn't possibly have been feeling so bad for such a long time.

      The issue is that the waiting list for VRT is 4-6 weeks long and I already waited six weeks to be seen at ENT. I think this is ridiculous, everyone raves about the benefits of VRT and when it can do so much to help I don't see why a person should have to wait for so long to be seen. I'm lucky in that I am a student because I have no idea how I would deal with this situation if I actually had a job, I'm sure most employers wouldn't be very understanding if their employee was off sick for four months.

      Ahhh. Well hopefully I won't have to wait that long for an appointment. The consultant told me it will get better eventually and that the VRT should really help me. I think it's just difficult not knowing how long it will take to pass and it's particularly inconvenient being that I am supposed to be graduating this year.

    • ben99468
      ben99468 sarahbia

      Posted

      Hello, Ben here, I live in Michigan.

      Why Wait?  Start Now.

      I have been diagnosed with VN and it took me almost a year to get an accurate diagnosis, and that is if you (i) actually believe they have gotten it right this time.  I went everywhere each specialist asked me to and along with all sorts of tests and physical exams, which even included a sleep study to see if I had sleep apnea, I was shown exercises and told to do them at home. 

      Where I live we don't really have a "national" health care system quite yet, and it still took me many many months to get into see each of the professionals that I saw.  Even in private practice they keep long lists of perspective patients so they can schedule their time off, (vacation etc) and keep their work days full of appointments, which takes it's toll on the timeliness of appointments. I have come to the conclusion that it doesn't pay "me" to wait and they aren't the only ones that know what I need to do to get back to good health.

      Now this may sound cynical, but I truly  believe that the practicing physicians try to keep their trade a secret.  Ms. Sarah, why wait for someone to tell you what exercises to do?  You can certainly look them up on the internet and start doing them right now.  It cannot possibly "hurt" in any way. Just be careful and don't over do it or fall down. 

      For example: I just Googled "home based exercise for VN" and I got over a quarter million hits.  The first one I clicked on was indeed called exactly that and so I read it.  At the very beginning on that site it says :  

      "During vestibular rehabilitation therapy (VRT), home exercises are a vital part of treatment." I will add that indeed you are going to be asked to do the exercises at home by said professionals.

      But then the very next statement right away says: "A physical therapist (PT) or occupational therapist (OT) specialist will design an individualized treatment plan with appropriate exercises to be performed at a prescribed pace."  ( Bunk!)

       

      So, as you can see, they try to discourage anyone from doing things with out waiting in a long line and paying for the information.  They try to keep it a closely guarded secret, but thanks to "ALGOR" for the internet, their little plan is exposed. 

      To be fair with them, they do shroud their statement with statements that include getting proper examination that might lead to health issue discovery by a professional, but if you have already been in to see them, and you know what is going to happen, you are already doing your part to safe guard your health, so why not  just start doing the exercises now? It will certainly lead to less down time, but you already know that or you wouldn't have mentioned how long it takes to get in to see someone.

      Being very careful not hurt yourself by falling down or getting upset mentally because some exercises will cause more dizziness, you can certainly start doing the exercises that you can find on the internet.  I would give you specific sites, but it will certainly delay this message because the "moderator" has to OK the sites befor letting the message post.

      To finish here, Ms. Sarah, Please take heart and be full of faith that you can do the exercises starting now, your PT will indeed actually ask you to do them at home anyway,  so go ahead and begin.  You can do it yourself with great success, just work carefully and reference the symptoms and diagnosis that you have been provided on google or your favorite search engine.

      Good Luck !

      ​Ben 

       

    • Terry6872737
      Terry6872737 sarahbia

      Posted

      VRT exercises are measured for the deficeits that you display upon observation by a physical therapist.  One other thing that can impact VRT is whether or not you may also have a BPPV component.  Often times BPPV is secondary to VN and can complicate the compensation.  If you begin VRT on your own, and I believe that you should, be careful and do not over do it.  Usually 3 or 4 exercises and only total time should be less than 10 minutes.  You can look some up on the internet or what I did is to stand in place and then take a pen and move it from right to left and follow it with my eyes staying focused on it while moving my head with the directionof the pen movement.  Did this 5 times each direction.  Then took the pen and moved it in a sideways figure 8 and again followed the movement while moving my head with it.  Also, with eyes closed from a seated position stood up and sat back down 10 times.  Balance with your feet together, eyes closed for 60 seconds.  After doing these I would then walk about 30 feet down a hall looking up then down on alternating steps.  Do this 5 times then 5 times looking side to side and finding an object to focus on as you turn your head.  5 times is not round trips but, 5 total times.  All of this will take about 10 minutes to acomplish.  You can add tossing a small ball into the air and catching it as you walk.  Follow the ball up in the air and down as you walk and catch it.  These are what a physical therapist prescribed for me.

      These are what I did and they worked well.  Just don't over do it.  I did early on by finding my own on the internet and over did it.  I really paid a price.  Cally may be able to offer some advice on this.  I believe that she was over doing it early on based upon some of my conversations with her.  She has come a long way in her recovery.  Time is your best ally.  Several things to do will be recommended by posters and by your doctors.  I really believe that being active, low sodium, hydration and TIME are what actually work to heal us.  I am getting closer to 100% every day but, it has taken me almost 14 months.  We are all different and as Cally commented, it really depends on how much damage is done to the vestibular nerve.  That is always the unknown for us and the doctors.

      Best wishes for your recovery. 

    • cally_44573
      cally_44573 Terry6872737

      Posted

      Hi, sarahbia,

      I definitely think you should begin VRT straight away BUT as Terry says take it easy. I did over do it on the beginning and just felt awful. I still only do 3 x 5 min sessions per day of the types of exercises Terry describes. I have an active job which involves lots of movement and this really helps me. In addition keep pushing yourself to get out and walk if you can looking this way and that. You are supposed to feel uncomfortable and provoke a dizzy reaction but not so much that you get overwhelmed and nauseous.

      Best wishes

      Cally

    • sarahbia
      sarahbia cally_44573

      Posted

      I finally saw an ENT consultant, who diagnosed me as suffering from uncompensated vestibular neuritis and vestibular migraines, as well as post-concussion syndrome, although I'm a little unsure about the last one. I feel a little better just having confirmation that there is actually something wrong with me and that I haven't just been imagining it or exaggerating the intensity of the symptoms! I was told there would be a 4-6 week wait to start VRT, however I called the department today and managed to get an appointment for the 11th May. I would rather it start immediately, but at least that isn't too long of a wait. I'm a little nervous about trying the exercises alone beforehand. I have been trying to walk as much as possible and look around at things as you said, however this also seems to make me feel sick and dizzy no matter how much I do it. I can't wait to start therapy. After I last posted I had started to feel a little bit better and I thought it may have been going away, however it got really bad again within a couple of days. I feel really awful again. I'm really nauseous and dizzy all the time again and I just feel drained. I wish I could just stay in bed, but that would probably be the worse thing I could do if I want to start compensating. VN really does suck.
    • Terry6872737
      Terry6872737 sarahbia

      Posted

      It's good that you were able to get that moved up.  You will find with this stuff that you will have ups and downs in how you feel.  You may feel good and all of a sudden out of the blue it hits you from nowhere.  The VRT will invoke some of the same symptoms but, your body will slowly adjust to what you are exposing it to.  Walking is a good exercise as well.  Move your head around and focus on different objects as you do it.  You will get better, just slowly.
    • kim34950
      kim34950 Terry6872737

      Posted

      Terry, did you have a caloric test done? How are you doing now? 
    • Terry6872737
      Terry6872737 kim34950

      Posted

      Yes, I had a caloric test done after it first began.  The results showed a vestibular and CNS deficit.  Never got a percentege of deficit, though.  I am definitely better but, not where I was before it all began.  I am around 90 to 95 percent recovered.  I have tried everything to try to get the last 5 to 10 percent eliminated.  I have just begun seeing a physical therapist and he is doing dry needling on my neck and shoulder muscles.  I have seen some improvement and believe that this may offer a benefit to overcoming my residual issues.
    • kim34950
      kim34950 Terry6872737

      Posted

      Glad to hear that. Are you able to resume normal activities such as work and going out?
    • Terry6872737
      Terry6872737 kim34950

      Posted

      I do most things that I want.  Certain environments still can bother me and make me feel like I am in a bubble.  Crowded settings bother me as well.
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