1. Community
  2. Ears, nose, throat and mouth
  3. Vertigo and Dizziness

Labyrinthitis/ Vestibular Neuritis...Please Help

Posted , 120 users are following.

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

Prev Next
  • megb4387
    megb4387

    Posted

    Hey Nicky! I have the same thoughts of a

    Brain Tumor or of the diesease MS. I've been experiencing this for a while now and am still not comfortable with the symptoms. The only time I feel relief is when driving a car. If I'm the passenger I feel naseous and off. Actually as I type this I am a passenger in the car and I feel awful.

    You seem like you had the same initial symptoms as me. This all happened to me after being sick and under a TON of stress. How are you feeling today?

  • nicky56389
    nicky56389

    Posted

    Hi Meg,

    Today I feel like I’m on a knifes edge, trying to not move very much as I am afraid it will kick in and I will go dizzy again.

    It’s funny you say about being sick, my family had not been well and I felt extremely sick mid-week before this happened, I too was sick but as there wasn’t much to bring up it was more retching than anything else, I was left with little broken blood vessels under my skin on my face it was so horrible, by the Friday this happened maybe it is all linked also.

    Do you have problems dropping off to sleep? My eyes flicker and I keep jumping as I drop of to sleep? I managed to get a couple of hours of restful sleep like periods today, I would'nt say they were deep sleeps but enough to help. Of a night time when I have too much thinking time on my hands I freak myself out and just can’t rest.

    N x

  • megb4387
    megb4387

    Posted

    Hey Nicki! In the beginning I definitely had problems sleeping for sure. I would actually wake up during the night with the room spinning and my heart beating out of my chest. I'm so sorry to say that it probably won't go away any time soon. I hate to tell you that BUT I promise it does get a little better. I'm finding it easier to do things now than I did a month or so ago. I do, however, still have major issues. EVen sitting down I feel spinny and weird. Nicki- do you have a private email address? It's far easier for me to talk thru email than on here. I will message you mine and hopefully you will give me yours and we can support eachother.
    • Babz36
      Babz36 megb4387

      Posted

      Hi I'm 36 and a single mum of 4 who works and is studying acupuncture in university. On Mother's Day this year I took my mum out for lunch and that's when the dizziness hit me! I put up with it for ten days before visiting my gp who diagnosed VN/Labyrinthitis and basically said I would have to put up with it! For a few days after that I got really bad and pretty much had to stay in bed and visited the out of hours GP several times who prescribed both stemetil and stugeron which, in my opinion made it worse! I'm now almost 5 weeks in and still feel very woozy most days. I get the odd spinning spell, usually when I get really anxious. But I just feel off balance and drunk most of the time. Sleeping isn't an issue as I feel absolutely exhausted constantly and when I'm tired the wooziness is much worse. I'm back on my anxiety meds (Citalopram) and the dr has also prescribed low dose diazepam only for when I really need it. 

      I feel so detached from things constantly and I'm longing to feel normal again, I'm signed off both work and uni as I can't read or write at the minute as my eyes won't focus. My neck and shoulders hurt so much and I get horrible headaches too. It's kind of comforting to know I'm not alone tho and that hopefully over time it will get better. I've been referred to ENT and am also seeing an osteopath privately to see if she can help. Thanks for listening to me moaning!!! Xx 

    • jackie64256
      jackie64256 Babz36

      Posted

      Hi I have had this for two years now, I had a very bad headache to start got out of bed and fell to the floor where I was sick, and then could move I had four days in hospital to be told it was labyrinthitis, since then my go has given me tablets which have not help, I live with it day to day and have no where to turn for any help, bleed outlook :-(
    • Babz36
      Babz36 jackie64256

      Posted

      Has your dr not referred you to ENT? Wow it must be awful being like that for 2 years :-( 5 weeks and I've had enough! Just hoping either the osteopath or ENT can help me! 
    • jackie64256
      jackie64256 Babz36

      Posted

      Hi I sure have had enough, I have again been back to the doctors on Friday, yet again she gave me the same tablets I've had before and don't seem to do anything, I got up set and she said she would refer me after a month if I tried the tablets again, doctors seems to think the ent will not be able to help, but I need to try every avenue now I have had enough 
    • jenny07787
      jenny07787 jackie64256

      Posted

      Hi, my son has been ill on and off for over a year GP said he didnt know what was wrong, ENT said nothing to do with his ear. Found this place

      Spire Wellesley Hospital Southend, who took one look at him and said it was a vestibular disorder, my son has a long journey but the dizziness is so much better and he is walking about much more, perhaps worth a phone call to them, they are lovely people.

    • Babz36
      Babz36 jenny07787

      Posted

      I've given up on meds as everything I read says they can slow recovery right down. I've got diazepam for anxiety but they are also a vestibular suppressant so I only take them if I really have to. I'm learning to live with the constant wooziness but the neck, head and shoulder pain is driving me mad. I'm trying so hard not to constantly take painkillers and am using heat rubs and a wheat bag to help alleviate the pain and stiffness. 

      Thanks for for the info on the hospital, bit far from where I live unfortunately. I'm using alternative therapies to try and help as I'm a massage therapist myself. I've had reiki and am starting a course of reflexology this week. I think I said I'm also seeing an osteopath as she has treated stuff like this before. I just want to wake up and feel normal again and not constantly exhausted! I've got a wedding to go to at the end of the month and my boyfriend is best man, I'm really stressing over that one! 

      I know in time it will get better but it seems it will be a LONG time. I try hard not to dwell on it but it's very hard, I feel I'm missing out on life so much. My 4 kids have been amazing but I feel constantly guilty that I can't do the stuff with them I would like to! 

    • jackie64256
      jackie64256 jenny07787

      Posted

      Thanks jenny nice to know there's someone who might help, as I said drs seem to fob you of with tablets mine didn't seem to know what to do about it 
    • Babz36
      Babz36 jackie64256

      Posted

      A lot of Drs don't seem to realise that tablets can prolong the recovery either! My dr is fab and very understanding but I know a lot of people who are just constantly fobbed off with medication. Unfortunately meds tend to mask symptoms and not treat the cause, which, in the long run causes more problems. Being dizzy definitely does suck! Xxxx 
    • jenny07787
      jenny07787 jackie64256

      Posted

      Hi,

      I know Dr's appear not to know what to do which is no help. We had a 4 hour round trip to get to this hospital but it is working. Dont know where y ou are but i found this by typing in balance clinics. It has been explained that the brain needs to retrain. My son made the visit and was given all the excersises so you may only need to get there once. Do hope things get better for you it is a horrible thing . Before this my son had been in bed for 4 months. 

    • Babz36
      Babz36 jenny07787

      Posted

      I live in north Wales. We do have a balance and ear disorder clinic in Wrexham maelor hospital but it's just the wait to be referred. The osteopath I'm seeing tomorrow has dealt with several patients with vestibular disorders so am hopeful she can help or at least start the process before my referral comes through anyway. 

      I was was only stuck in bed for a few days but that drove me mad, I just can't plan things as I don't know how I'll be from day to day. I can get up and move around, I don't fall over or anything but I feel very off balance. I also get tired very quickly which, being a single mum to 4 kids, is very hard. I know the way I'm suffering is probably a lot milder than most but it's still not nice. 

    • jenny07787
      jenny07787 Babz36

      Posted

      My son is very tired too. If this  is the same type of clinic you will get better, my son has started with the eye excersises which has helped so much. Good luck let me know how you go.

       

    • Babz36
      Babz36 jenny07787

      Posted

      I will do. I hope your son gets well soon xxx 
    • jackie64256
      jackie64256 Babz36

      Posted

      It's nice to hear there might be some help for your son jenny and yourself baz, thanks for the info both of you it's certainly something to think about 
    • Babz36
      Babz36 jackie64256

      Posted

      Get back to your GP and get yourself referred. I'm barely coping with everyday life after 5 weeks so how you've managed for two years is beyond me! It's a shame some GPs are so understanding and others just don't seem to care at all. Xx 
    • jackie64256
      jackie64256 Babz36

      Posted

      Thank you I will she's told me to go back in a month, so I will insist she refers me, it does get better from the first weeks believe me, I had my wedding book five weeks after mine happened, which we nearly cancelled but we didn't I got through it,  hope you soon get better 
    • Babz36
      Babz36 jackie64256

      Posted

      I am really worrying about the wedding we are going to at the end of the month. It's in Stevenage so we are staying there and my boyfriend is best man which means he will be busy a lot of the time and I'll be on my own. I'm frightened of it getting worse there and making a show of myself and I know worrying won't help either!! Being tired makes mine a lot worse and weddings are such long days, the reception and evening do are in the hotel we are staying in, but I don't want to seem rude sneaking off to bed!! Sorry, not meaning to moan. Having a bad day with it today so getting myself all upset! Xx 
    • jackie64256
      jackie64256 Babz36

      Posted

      Oh you poor thing I feel for you, it is very tiring I'm sure people understand, trouble is nothing shows so people tend to think it's gone when I mention it sometimes they say oh have you still got it, good luck with the wedding don't worry to much otherwise will make you feel worse x
    • Babz36
      Babz36 jackie64256

      Posted

      Trying hard not to. Think I'm tired today, having a bad day and my kids went back to school after Easter today after we had a little holiday last week. So I'm all on my own and thinking too much! My boyfriend has been AMAZING but I don't want to go on about it all the time. He said earlier "yeah but your dizziness has gone" and I was like "no it hasn't, I just don't go on all the time now!" Like you say it doesn't show so people don't understand! Are you constantly dizzy or do you just get spinning at times? Xx 
    • jackie64256
      jackie64256 Babz36

      Posted

      The dizziness has gone, it's when I'm walking it's at it's worse, looks like I've been on the beer, stopping to cross the road if I look to quick I wobble things like that, so it is much much better it just hasn't gone completely which gets me down sometime 
    • Babz36
      Babz36 jackie64256

      Posted

      How long did it take to mostly go? I'm getting very depressed and anxious at the moment thinking I'll be this bad forever xxx
    • jackie64256
      jackie64256 Babz36

      Posted

      I think you should start to feel better soon , I got married at five weeks and the worst was over then, what I'm like now is not to bad but not right 
    • Babz36
      Babz36 jackie64256

      Posted

      I'm hoping so! I have days where I feel ace then days where I feel awful :-( xx 
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.