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Labyrinthitis/ Vestibular Neuritis...Please Help

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shishir
shishir

Hi guys,

First time poster, I hope I can find people that can relate to my condition or help with it. This may be a bit of a long post, I would appreciate it if you would spare some time to read it all.

Condition: Most likely labyrinthits (In my 7th week now)

Background info:

2 months ago at uni when I was in the gym, I was exerting myself doing weights and felt something pop in my left ear. I felt really faint and headed back...over the next few days I had severe vertigo/dizziness/nausea. I also experienced my first anxiety/panic attack when i felt these symptoms, which to be honest felt worse than the actual symptoms. I went to the uni GP and she said I had labyrinthitis (though she did no tests). I also recall not having any flu like symptoms so I'm not sure how it could be viral labyrinthitis. Thankfully all symptoms vanished within 1 week.

Life was back to normal. However 3 weeks later, I was back home for the summer and had been back in the gym for a week or 2 when I felt really lightheaded and faint again. Sometimes I feel like this in the gym when I exert myself so didn't think much of it. I came home however and experienced another anxiety attack. The dizziness/vertigo etc was MUCH LESS severe than the initial attack 3 weeks ago at uni, however it has persisted for coming up to 7 WEEKS now.

Currently:

Over the past 7 weeks, I have had good days and bad days...good hours and bad hours. I went to the local GP who once again said the symptoms matched labyrinthitis without doing any tests. He prescribed some stemetil (which I took only twice as it didn't help and also because I have read everywhere online that it only slows down the recovery from labyrinthitis).

I tried just walking around, passing the ball about with a friend to 'retrain' my brain. However, the symptoms were still in the background and didn't really seem to disappear. But I did feel much better then than I do now.

For the past week, everything seems to have gotten worse. I have spent more time in bed than normal as my friends are on holiday at the moment and I'm not sure if this is the cause? As I'm no longer carrying on with things as normal.

Other info:

Since day 1, I have also had a popping sensation in my left ear every time I swallow.

Head feels heavy. Neck aches. Feel a pressure within my head/ear.

Though I have had anxiety attacks a few times, lately it feels like I'm on the verge of one all the time.

I also have other normal symptoms such as feeling nauseous, tiredness etc.

Very recently, it feels like my vision is a part of the problem too. My eyes feel very heavy and like I cant focus on things. Also, the last few days, I see little flashes of lights which aren't actually there (this has only happened about 3 times in as many days)

Note: I have finally managed to get a specialist ENT appointment, which isnt for another 5 weeks unfortunately, but better than nothing. I'm sure at that point, they will confirm it to be labyrinthitis or something similar as the symptoms all match.

Questions:

Is there anyone else in a similar situation as me? How are you dealing with it?

I have done some generic VRT exercises, but it doesn't seem to help too much. Thoughts about VRT?

What triggers your symptoms? For me it's been hot weather, shower, loud noises, bright lights, dim lights and more (nothing specific).

My anxiety seems to be triggered by anything that I think is abnormal, e.g. sudden tingling somewhere on my body, sudden temporary noise in my ears, sudden temporary dizziness etc etc. All of which is probably normal, but they seem to trigger anxiety when I feel like this. Does this also happen to anyone else?

Are there any tips to control the anxiety? I swear its a lot worse than actual dizziness.

Are there any tips to control the dizziness? Such as VRT or others. Is it better to stay active and feel worse for a short while or should I just stay in bed?

Any other useful information?

WILL THIS EVER END?? I have read some success stories, but will it really take months to years??

Is it also true that even if it goes away, it can come back any time in the future? This is what scares me the most as it seems there is no permanent cure.

I am getting seriously depressed about this as the past 7 weeks have been pure hell, I wouldn't wish it on my worst enemy!

Thanks for listening to my rant/story. I am looking forward to hearing back from anyone at all!

Thank you

sad

8 likes, 338 replies

338 Replies

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  • tiffkajewski
    tiffkajewski

    Posted

    Hi,

    I have the same symptoms and have been told i have vestibular labyrinthitis, though i do not have any hearing loss - has all the tests, ecg, blood tests, CT scan, chest xray, had neurosensory tests (balance and hearing) which then lead to my evaluation of this. I couldn't bare the entire testing of the balance tests (where they blow the cool air/water into your ear) - they couldn't evaluate how far the damage was as i could not bare the test any longer.

    It hit me out of nowhere - literally. I was getting my haircut then all of a sudden i had a huge rush of hot and cold sweats, went pale, felt light headed and on the verge of passing out - my eyes went hazy, couldnt see, had dizziness - that initial episode lasted 1.5 hours. i was taken by ambulance to the hospital who dismissed me as having been dehydrated as it was the middle of summer (beginning of January - i am in Australia) The heat definately wasnt it. i wasnt exhausted, or stressed. it came out of nowhere and it hasnt left me since. I am looking at my 4th month of this (this saturday) - I begin my VRT tomorrow. I have had a new sensation of false motion however - when it all began - i could manage to drive and walk into the shops, pass the isles, etc. now - it is a struggle to even watch traffic pass me by at an intersection without being thrown off and into a dizzy spin. i cannot walk into stores anymore as passing the aisles and the lights sets me off. I manage to work full time most days, though some are unbearable as everything is in motion around me.

    has anyone else had this with with watching things pass them by?? and feeling like your still going forward even though you have stopped??? or in any direction really. i am constantly moving although i am still. I have recently (the last 2 weeks) have had ear fullness and pressure in my left ear... it has now migrated to my right ear as well and is always there. It is constantly pressurised and feels as though there is water stuck inside - though my ears are "healthy" so they say. no sign of visible infection. should i go back again for another consult?? or just ride it through?? I have 2 small children, aged 4 and almost 1. i would give anything to be the mother i was before the new year began.. shopping, driving, dropping off at school/kindergarten, going out for dinner!! I have aches in my shoulders and neck and have been told that my c1 c2 & c3 vertebrae are misaligned - causing pressure and dizziness also. please look into this if you have these symptoms as i had no idea that it could be something so debilitating. i also have pressure in my head and feels like i have sinus issues as i am always congested. this has only happened though since my initial episode. I have had a couple of "BAD" turns over the few months with this, and have felt extremelly fatigued for days after, constantly lightheaded as though i have been drunk all day and night. I have never "passed out" during these turns, though have felt scarily close each time it happens.. i have been given 1mg of valium x3 day to settle this, though wish to stop as i do not want to become addicted. i do not think it is helping me much anyway, to be honest, i am taking natural substances as vitamin B12, "vertifree" & "purecalm"... i think these helped in the past though not so much any more...

    as all of you, i had never heard of Vestibular Neuritis/labyrinthitis before this all started. i was an energetic, healthy, fit, full time working mother. I do not live anywhere near a major city - every test i have to have, i have to travel at least 4 hours.. driving in the car these days is extremelly unsettling for me.

    it is so hard to explain to family and friends, coworkers and all else how i feel and that it is not "all in my head" as i have been told before. it is very real. VERY REAL. & the most awful thing i could ever imagine.

    I have taken so many of the little things in my life - like shopping for milk,etc - driving and even dropping off my son to kindy and enjoying his time there - i had no idea how much of an affect it would have with a disturbance to this. if anyone can offer any advice from here on in i would be ever so greatful.

    i am at my witts end with this... being told it would go within a few weeks. it clearly has not. please, i need some advice from others. some direction and some light at the end of the tunnel - if there even is an end!!! please. i am trying anything.

    Thanks,

    Tiff x

    • DizzyDarren
      DizzyDarren tiffkajewski

      Posted

      Hi Tiff

      I just wanted to say hello. What you've described is exactly the same as what I experience everyday.

      The motion thing is a pain. Especially when I get on and off escalators. I feel as if I am moving when I am not. I also get the rug being pulled under my feet sensation or like you've slipped on a bit of ice that you didn't see.

      I had a go on a treadmill the other day. What a fool I was, I felt doubly vile for about a week haha

    • stephleigh20
      stephleigh20 tiffkajewski

      Posted

      I know this has been months ago but have u healed? I've been like this since April 28th and it has been a nightmare! Getting doctors to listen in the us is really hard sometimes! 
    • Fudgeybear1
      Fudgeybear1 stephleigh20

      Posted

      Hi,sorry I know you were talking to Tiff.

      i am struggling at the momment,I was diagnosed with uncompensated labythrinits a couple of years ago,I did write on this site about my symptoms,they re identical to everyone on here.i was wondering if you had any tips on how to cope I ve been living with for years and as much as like my doctor,I feel like she dosn t know what to do with me anymore.i find it hard to go anywhere it's took all my self confidence away 

    • stephleigh20
      stephleigh20 Fudgeybear1

      Posted

      As much as I would love to have answers I am not sure what to do, I haven't been diagnosed with anything yet, I go to the ENT Monday November 3rd 2014, I am so scared because my balance feels really off and I know the test can make a person feel worse at the moment, I also have anxiety since this all started and just thinking about going to the doctor puts my stomach in knots, but I want to know what is wrong so what am I supposed to do! I'm tired of being scared about everything when nothing use to scare me, I too feel like my self confidence and self worth has gone out the window since this all started! I'm always shaky, nervous, irritated, feels like my head shakes as well sorry I didn't have answers I too want to know some relief for it
    • Fudgeybear1
      Fudgeybear1 stephleigh20

      Posted

      Aw I hope you get some answers,I didn't t have anxiety before all this started ,it's just horrible to think that we are all suffering and the doctors try to help but don t seem to know what to do with us.Good Luck for Monday 
    • stephleigh20
      stephleigh20 Fudgeybear1

      Posted

      Thank you and yes I want/need answers, Im ready to start healing, I have a 2 year old daughter and I feel like I'm missing out on everything, the anxiety is the worst part in my opinion, I also didn't have anxiety until all of this! I'm really scared about what the ent is going to do! I use to not be worried about things like that but now I seem to worry about everything 
    • gillian76726
      gillian76726 stephleigh20

      Posted

      Don,t get too het up at what the ENT is going to do. they will ask a lot of questions to start, then they usually do a hearing test which is easy and painless.  they will look,into your ears and possibly check things there, again not a problem.  If they lay hounding and turn you about to see how you react to certain movements. They are always supporting you, and you really, really have nothing to worry about Stephleigh.  I know it,s easy to say 'don,t worry' but we,re all.here to support you and reassure.  Take some Rescue Remedy  the day before  you go and up until you go, get it in Boots.  It,s good to calm you down wouln't actually harming you in any way as it works on your emotions. I even give it to my  dog which I will be doing this Friday as we have to travel on trains and he will be anxious about it, and may take some.myself, ha ha.

    • stephleigh20
      stephleigh20 gillian76726

      Posted

      Thank you so much for the support, I usually do not get worked up over these things but with anxiety over all of this its hard to control it, where can u get rescue remedy? I'm in the US! 
    • Fudgeybear1
      Fudgeybear1 stephleigh20

      Posted

      I know what you mean my Daughter is eleven and for nearly half of her life I have been like this.i agreeI I think the anxiety is worse than anything else.try not to worry about ent appointment it's not so bad,Gillian has described it exactly.

       

    • stephleigh20
      stephleigh20 Fudgeybear1

      Posted

      Have any of you tried antidepressants for the anxiety! I took one for one day, another one for two days and the last one for 10 days, the last one was lexapro and it made me more dizzy than I already am, but It says that antidepressants could help with labyrinthitis I just haven't found one that helps me yet! Going to see the ent first then may try another one im just tired of being like this i don't know how you have dealt with it for as long as you have! 
    • kimberley13494
      kimberley13494 gillian76726

      Posted

      I have been suffering from these symptom's for a few months now.... I'm waiting on an appointment from the ent and I'm also worried about it!! I did write on here a few weeks ago bit no one got back to me.... Hope your okay now Gillian
    • stephleigh20
      stephleigh20 kimberley13494

      Posted

      I've been suffering for 6 months I know how u feel! I just want answers and to get better! I have an appt on Monday with the ent hopefully that is going to give me answers and a solution 
    • gillian76726
      gillian76726 stephleigh20

      Posted

      In any health food store. I used to,live to,live in the States nd got it there . See attached pic
    • Fudgeybear1
      Fudgeybear1 stephleigh20

      Posted

      Funny you should ask that.i did take mitizapine for two months,I foolishly didn't t realize they were anti depressants!! I did feel quite good on them,they did help the anxiety,but I didn't t like the side effects,gaining weight,really bad memory and feeling tired all the time.i ve also had really bad withdrawl symptoms from them,it was probably my fault I didn't know you had to withdraw slowly.inread something today about anti depressants being quite good.i don t know if I ve got the energy to try a different one 😄 I don t really want to live on anti depressants,but now I m starting to wonder.i m not sure how I ve managed to deal with it so long,it just goes to show we re stronger than we think
    • kimberley13494
      kimberley13494 stephleigh20

      Posted

      I started feeling like this in July and I just don't feel any better.... I have been put on so many different tablets and they haven't helped!! My symptoms are horrible.... No one understands unless they are going through it.... I feel drunk all the time, feels like my eyes are going round in circles, feels like my eyes are shaking and sometimes I get blurred vision!! I have or have had popping sensations and hot feeling in my ears!! I feel forgetful, confused and disorientated a lot of the time!! Just hope we can both feel better soon
    • gillian76726
      gillian76726 stephleigh20

      Posted

      I personally would not touch anti depressAnts.  They just ,mask' the problem and can become addictive, also side effects not good. And some people even feel worse.
    • stephleigh20
      stephleigh20 kimberley13494

      Posted

      I can relate to all of what u just said, the drunk feeling when I don't even drink is annoying, the disorientation is unreal, and loads of pressure in my temples, ears, nose and heck all of my head! 
    • stephleigh20
      stephleigh20 gillian76726

      Posted

      Yeah i tried lexapro and after 10 days I couldn't handle it anymore, my dizziness was so bad I literally was almost crawling just to go to the bathroom 
    • kimberley13494
      kimberley13494 gillian76726

      Posted

      No Gillian.... No one got back to me!! Feels like your on your own sometimes.... The symptoms I have are horrible
    • stephleigh20
      stephleigh20 Fudgeybear1

      Posted

      Yeah I know how u feel, my gp wants me to try another one, I've thought about it because I can't live this way forever, but like u I do not want to live on medication either so it's a hard situation to figure out what to do! A constant battle with myself 
    • stephleigh20
      stephleigh20 kimberley13494

      Posted

      My symptoms are so bad it's hard for me to take a bath! I hate feeling dirty and looking nasty, but it takes everything I have to get in the tub, spray myself off and manage to wash my hair, there are some days I literally just wipe myself down with wipes I really just want a solution and to feel better 
    • kimberley13494
      kimberley13494 gillian76726

      Posted

      In July I started to get poorly.... I went to the doctors with feeling dizzy and feeling drunk all the time.... They gave me stemital and these tablets for labyrinthitis and I didn't find they worked.... I still feel dizzy now and feel drunk everyday.... My eyes dont feel right they feel shaky and it feels like they are going round I also get flashes in my vision and blurred vision.... I have hot flushes at night and I'm only 24 haha.... I have popping sensations in my ears sometimes and hot flushes in my ears.... Its so nice to talk to someone who understands.... Thankyou
    • kimberley13494
      kimberley13494 gillian76726

      Posted

      Also I sometimes have pain in my temples, in my ears and in the back of my teeth it just feels like its stabbing pains
    • kimberley13494
      kimberley13494 stephleigh20

      Posted

      Its horrible isn't it!! I'm not that bad is that because your so dizzy?? I just want my ent appointment to come through now.... Just glad to talk to someone who is going through similar things....
    • Fudgeybear1
      Fudgeybear1 gillian76726

      Posted

      I do agree with you,I know in my heart they re not the answer,I have had really bad withdrawls,and really don t want to take them again .last year I started to feel really well,but earlier this year I had a set back,so I m kind of back to square,but at least I know it can be done,we can feel better.i wish I had the answer to help us all.i try to keep active,doing housework,a little gardening,playing with the dog or children,i
    • stephleigh20
      stephleigh20 kimberley13494

      Posted

      I'll send u my email, and yes partially because I'm so dizzy, and other part is my anxiety kicks in and I'm scared I will pass out 
    • kimberley13494
      kimberley13494 stephleigh20

      Posted

      For some reasons its not letting me send my email address over to you.... Anxiety is horrible.... I have panic attacks and it makes it worse!!
    • Fudgeybear1
      Fudgeybear1 stephleigh20

      Posted

      I can t take bath!!! I always feel like I'm going to pass out.and on a bad day a shower sets off a panic attack.sorry I just had to reply,I have never spoken to anyone who has felt the same as me,i m sorry that you are suffering the same way
    • kimberley13494
      kimberley13494 Fudgeybear1

      Posted

      Hello.... We are a punch ain't we?? Do you get any other symptoms?? Anxiety is horrible.... I passed out in the shower and I think the worry doesn't help
    • gillian76726
      gillian76726 kimberley13494

      Posted

      If you want to PM (private message Stephleigh with your email address, click on the envelope icon underneath her logo thingy on the left. That will take you a page where what you write can,t be seen by everyone else.  I think they don't want you putting your em adress on a public page, okay?
    • gillian76726
      gillian76726 stephleigh20

      Posted

      Okay, at the beginning of my journey, I had all of this too, everything you. Listed.  It was like I had a free or virus.  The gp was useless, but they did eventually send me for an MRI, which was normal.  the exhaustion was the worst and o spent.my life going to bed and unable to do much at all.  I ought I had a yroid problem and saw a private holisticw Dr who,had also been a medical doctor .   He got me started on lots of supplements and gradually they did help me to go up a few notches on the scale.   My eyes did the sa e thing, nd still do to,some extent, but I guess. MY body has. Adjusted itself a little.   I will pm you with details of my regime and you can ,pick and mix from it.   I will suggest that you'll ok up VEDA on line and Facebook, where you will find under Vestibular Disorders association.  they are a great source of info.  check the website first as they list and describe all the different kinds of disorders, symptoms etc.  The. You can ask ?,s on F,book. don,t pay for the. MEmbers hip unless you want to, as you can get a free news,ether monthly and the info,I mentioned without it.  Use the F,book for ?,s.
    • kimberley13494
      kimberley13494 gillian76726

      Posted

      Thankyou so much.... That has helped me so much.... I'm scares about my eyes if anything.... It just feels like they are shaking and going round in circles.... Did you ever feel like you were forgetting things?? Feeling confused and disorientated.... Send me your email address thankyou
    • gillian76726
      gillian76726 Fudgeybear1

      Posted

      Yes I am Like you too.  I,have cut back on things, and have learned to pace myself.  I know when I will tire easily and if I have a big thing coming up that is unavoidable, I will try to do as little as possible for a few days before,. crazy huh? I prefer to go he natural route and refuse all these awful drugs as they have all made me feel worse, or not worked. So they are,pointless. I use homeopathics, good Vit supps, Keep,hydrated and rest in between jobs too.
    • kimberley13494
      kimberley13494

      Posted

      Gillian could you send me your email address as fir some reason I cant send private messages to you through here!!
    • Fudgeybear1
      Fudgeybear1 gillian76726

      Posted

      Yes it's crazy,it's horrible that we are all suffering buts so nice to talk to people who know exactly how I feel ,I was begining to think I wasn t pushing myself hard enough to get better or was it all just in my head,but it's not !!! It's the time in years that people have said yes I know you feel,it's amazing 😄 can I please ask you what supplements you take? I really don't want to go down medical route x
    • tammy91461
      tammy91461 stephleigh20

      Posted

      I am also suffering from all of this and also in the states. I was wondering what your ent said. I have my appointment Thursday Nov. 13th. All my symptoms started after my hysterectomy via da vinci method :-(  
    • Terry6872737
      Terry6872737 tammy91461

      Posted

      I live in the US as well and have been suffering from VN for 8 months.  Found that an ENT was a waste of time as they focus more on issues that are sinus related.  Your best bet is with an Otologist/Otoneurologist as they specialize with issues associated with only the ear.  I have seen steady improvement over the 8 months but, still have a ways to go.  I do believe that the anxiety contributes to the continued issues more so than the VN itself.  However, I have read that they are closely associated and most cases with VN experience anxiety as a side effect.  Any vestibular suppressant will delay compensation as I found out first hand.  I was taking a suppressant for 3 months before my neurologist told me that they were the cause of the delay in compensation.  I began VRT 3 months after my initial episode and found it to be most helpful.  However, prior to beginning VRT I found some exercises on my own and over did, resulting in another set back.  I have been seeing an Otologist for 2 months now and he is great.  He understands everything that I discuss as symptoms and he is the first to put in perspective that recovery takes as long as it takes.  As long as you are seeing improvement, and that is measured in months not days or weeks, you are making progress.  There are tests that need to be performed to rule out other health concerns and to confirm VN/Labrynthitis.  The treatment for VN and Labs is the same.  There are treatment therapies to address continuing issues if progress is not being made.  The important thing I have found is yo have a good support and to know that there is no quick fix.  I told myself that as I progressed I would share my story with others because there are so many negative responses that it sometimes causes us to loose hope and to recognize that there are positive outcomes.  I am probably at 90% today compared to where I began.  I have seen significant improvement in just the last 2 months.  The biggest issue for me, as I mentioned, was finding the right doctor to know what I had and how to treat it.
    • stephleigh20
      stephleigh20 tammy91461

      Posted

      Omg I just saw this im going to message h my number and my email, I get messages faster that way as long as you are comfortable with that 
    • stephleigh20
      stephleigh20 Terry6872737

      Posted

      Was the test painful? What all did they do? My appt is Thursday November 13th, and I'm scared to say the least! My anxiety gets way worse when at the doctor
    • Terry6872737
      Terry6872737 stephleigh20

      Posted

      It would depend on the type test that they may do but, not any tests that I had that were uncomfortable.  The basic test for vestibular issues is an ENG.  That is where they test your balance and the only potential is getting nauseated.  They may do a Dix-Halpike to test for BPPV as well.  That could involve nausea.  On my first and many visits to several ENTs, it was after my 4 different ENT. And 6 weeks without resolution before I had the ENG.  basic VN resolves in 4 to 6 weeks and that is what I kept being told initially.  Of course everyone is different and since they cannot see the Labrynth or our inner ears it is a process of elimination in trying to determine what you may have as an issue.  Labrynthitis involves a loss of hearing and is the distinguishing symptom between it and VN.  if this is your first visit and you recently became ill I wouldn't think they would immediately do much in the way of tests, unless you have a really good ENT.  I saw 5 before deciding to go and find an Otologist.  Most ENTs have no clue in how to treat VN and really have limited knowledge in what it is.  Nothing to be afraid of though on your visit.  Try, and I know it's hard, to not let the anxiety add to the condition.
    • cweez720
      cweez720 stephleigh20

      Posted

      Steph - It has been about a year, how do you feel now? Did you ever find any solution to your labrynthitis and how long did it end up lasting?
    • melanie61979
      melanie61979 kimberley13494

      Posted

      Hi. I know this forum is so old but

      I am also struggling with possibly a inner ear problem. 2weeks constant dizziness. I honestly think that this has consumed me. My family are frustrated with me all of the dr visits. I have had CT of neck and head TWICE!!!! I had to leave my job. The world as I know it has changed. My question for you is did you ever recover? Thankyou for responding if you see this.

    • gillian76726
      gillian76726 melanie61979

      Posted

      melanie, it wld prob be better to start a new thread. You can still contact someone via a PM aswell,which should go to their email❤️
    • cat23307
      cat23307 tiffkajewski

      Posted

      Hi Tiff,

      I know this post was 3 years ago but I was wondering if you had an email address I could contact you on? Have you recovered? What helped? I have everything you are describing and I just want it to go away, it's awful 😭 I am also in Australia.

      Kind regards,

      Cat

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