Labyrinthitis/ Vestibular Neuritis...Please Help

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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

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  • Posted

    Hi guys, hopefully i get a quick reply to my story, ok so 6 months ago i accidentally smoked some weed then ended up in a massive panic attack which made me feel spaced i only remember certain parts of the night) then a couple days later i  was playing my video games like usual (with a headset on pretty loud like usual) then out of nowhere i had this weird feeling in my head almost like my brain couldnt concentrate and my vision kept feeling weird like it couldnt focus and my eyes are weird like when i look at lights i see a bright beam or glare coming off them and if i look at a tv or something, like the channel logo has like a blurred double at the top and a blurred double at the bottom, and my eyes flicker to adjust to light levels and they cant focus .. like my vision is perfect but my eyes cant lock onto objects (does that make sense to you?) and my eyes see trails like if i swing my arm up and down i see a blurred trail following it.. same with like the lit part of a ciggarette makes trails aswell if i wave it around, does anybody else have these kind of symptoms with their eyes? anyway my eyes are now always shaky from my dizziness(wooziness) as of about 5 weeks ago i have had every test done and they couldnt find anything so they said it was psychosomatic and they through me into a mental health ward for 2 weeks and all the tests were negative, but about 2 weeks before they put me in there my eyes randomly just stopped being able to focus, now they shake and see trails and flicker to adjust to light and they have they also have like little flickering beams like fireflies almost.. and its hard to concentrate on anything

    while i was in the mental health ward i went to lay down then when i went to get back up i had a random vertigo attack and fell to the floor, it only lasted like 10 seconds, but ever since i have had dizziness(like constant spinning/wooziness) which seems to get gradually worse each day (did this happen to anybody else? and does it ever stop getting worse) its almost to the point where i cant sleep or eat( constantly feels like im moving or the lounge im laying on in slanted or moving) anybody else have this feeling too? the dizziness is constant and when i lay my head to the left i get a little hit of vertigo for a few seconds everytime(is that normal?) and ever since my eyes went out of focus my ears have been constantly ringing and it seems as though the ringing grows louder as the dizziness grows worse,i also notice that the ringing in the ears kind of pulsates sometimes or will get really loud and piercing when my heart beats hard after eating or whatever..

    since i got home the dizziness has been growing each day and im just wondering if it sounds like labrynthitis? and the dizziness(moving around constantly/woozi feelings is there no matter which way i stand or sit or lay and my eyes feel shaky and wont lock on to objects(focus) and my ears are constantly ringing like a loud piercing buzz (on occassion it makes this little crackling noise .. kind of like when u first put the milk in rice bubbles or rice pop cereal (that crackling noise they make) and is it just me or does looking at moving objects or tvs and stuff make ur head feel worse like its going to burst into a vertigo attack?? kind of like the brain sees movement then makes ur head feel those movements if that makes sense, anyway i basically just try to lay down most of the time because i dont want to make it worse, but it seems to get worse each day anyway, it feels like the floor moves underneath me when standing still and does anybody else notice that it feels worse if u close your eyes or take a deep breath? and does anybody else have dizzy spell attacks when laying down with eyes closed? kind of like, youll take a random breath and u randomly just feel like your spinning around in random directions almost as if your flipping uncontrollable ?

    does anybody else have all these symptoms constantly? and if so does it sound like labrynthitis?

    And also does anybody else feel like screens and moving objects make it feel worse? l;ike a vertigo attack is about to come on? and do you have visual oddness(disturbances like mine)

    Thanks

    Yours Sincerely. Blain C

     

  • Posted

    Hi all...newbie here (week 3-4). I was initially told I had BPPV and didn't buy it. Referred to PT who confirmed my suspicion. He told me today that he thought it sounded consistent with Labyrinthitis or VN. 

    Reading through this thread, it looks like people have spent a lot of time (and money!) getting additional tests to figure out exactly which one they have. Seems to me the treatment and end result is about the same...so wondering...is there any benefit (other than maybe more peace of mind in just KNOWING what the heck is wrong and why?) in going down the road to confirm a diagnosis one way or another? 

    Also it sounds like if I need or want additional help beyond PT that my next step is a neurologist...is that right? I was thinking ENT but reading all of these stories is making me feel otherwise. 

    Thanks!  And thank you to all of the posters, although it's kind of disheartening to know that I could be dealing with this for months, it is good to read this and know that I'm not crazy and I'm not alone.

    • Posted

      Yes I would skip the ENT route and go straight to a Neuro Otologist. ,A straight Neurologist wont do you much good either, as i and others have mostlt realised.  they dont seem to have a lot,of knowledge in the vestibular area, whereas a neuro otologist does as its  their speciality. It took me the best part of four years to learn that by trial and erroR!
    • Posted

      Similar scenario to yourself. Diagnosed with BPPV, not convinced at all, I went the ENT route and it was a waste of weeks. I was fortunate or should I say, I stuck to my guns and insisted the ENT was not helping and got a referral to a neuro otologist who diagnosed me with VN.  But the process wasted precious time. Had I received a referral straight then maybe I would have recovered - yes I am 95% recoverd - much soon. As it is it has been a roller coaster ride for about 18 months and required me to do so much more then VRT exercises.  I've had to devote a lot of hours to regaining my balance. It's still not completely recovered, and I doubt it ever will, but these days I don't walk like the local drunk, I'm not lightheaded every moment of the day and, there are whole days go by without me thinking about this awful condition.
  • Posted

    Hi guys,

    Looking for some reassurance, comfort I guess.

    I am male and 42

    Doctor believes I may have labyrinthitus, have an ENT appointment in 6 weeks, not been well for going on 8 weeks in total, not including the symptoms I have suffered off and on six months leading in. (Feeling of being drunk hung over but not having had a drink, one episode of strangest feeling in the head of going to pass out, black out, dizziness feeling, lasting about an hour, have also suffered tinitus, deafness last few years and suffer bad sinus infections last two years around March)

    Current situation came on after massive anxiety stress attack, because of symptoms leading up to current situation and some other circumstances I guess

    Had wonky strange feeling in head, dizzyness balance issues when walking or turning my head, constant nausea, struggling to eat, popping ear, head pressure, ears buzzing worse than before and most other symptoms described in this thread.

    All blood work and cat scan were fine.

    Felt like I was trying to walk on a moving train.

    Mostly these symptoms have gone after about 6 -7 weeks, thank goodness, but I am now left with just a general unwellness feeling, still slightly wonky in the head, still some dizziness every now and again, some on again off again sharp sinus type headaches, pressure in the sinuses, neck aches from the back of my skull and the worst and most worrying is the jelly legs and arms, my right arm especially, some days worse than others.

    Some times I get up to walk and my legs don't feel like they are beneath me.

    My question, is this something others have experienced in the recovery process, weak fatigued jelly like limbs after the others symptoms have started to subside ?

    Is this normal or should I be getting more tests done ?

    Doctor checked my strength, which he said felt fine, not sure what that ruled out.

    This whole experience has been so scary ,debilitating and depressing, looking normal on the outside but feeling lost and wrecked on the inside.

    People think I am crazy, having a meltdown.

    sad

  • Posted

    Hi. Is anyone still active in this forum?

    I am going to have a good read later as I too suffer with dizzyness, currently undiagnosed but have appointment this week for a follow up. 

    Bit of background. Has been around 8 months now. Had a really bad spell last year where I was bed bound. Gets worse when im around loud noise or enclosed space. Looking like labrynthitis. Don't actually suffer dizzyness as much more off balance, disorientated, fatigued and loads more. Any help would be much appreciated. Such a nasty illness. 

    Hope you are all feeling better. 

    • Posted

      Oh theres lots of us still active, if thats the right word as sometimes we're not ha ha! do some research,,got to VEDA (vestibula website) lots,of,good info on there. There are so many different kinds of 'dizziness',,so getting a diagnosis helps, although a lot of consultants dont seem to get it right!
    • Posted

      hi Gillian. 

      Thanks for your reply. I have been going mad recently with this. I am going to have a read of that website later as I am currently at work. I will hopefully update after my appointment this Thursday. I had an MRI scan so I am going to ask for a definite diagnosis this time so I can start planning a route to my recovery. 

    • Posted

      Ask for a VNG test to help determine what is wrong if it is an inner ear issue.  An audiogram will also be helpful.
    • Posted

      Hi Terry. What is a VNG test? I have been to the ENT which showed my hearing has stayed exactly the same as the last time I visited around two years ago (I mean every test came back identical) but I had slight hearing loss then. The doctor said it sounded like Labrynthitus and told me to do some exercises (finger to eye and throwing a ball etc) until my follow up appointment which is this week. I will demand more tests though as I am not happy with just a diagnosis on symptoms alone. I do remember having a bad chest infection a few months before the first attack where I couldn't (and still can't) bring up mucus. It feels like its all blocked around my chest. I am wondering if that can cause anything too. I sometimes wake up with a sore chest and difficulty breathing which can bring on the balance problems and dizzyness. 

      Does anyone else experience different triggers other than the usual, like noisey places?

    • Posted

      Videonystagmography. VNG testing is used to determine if a vestibular (inner ear) disease may be causing a balance or dizziness problem, and is one of the only tests available today that can decipher between a unilateral (one ear) and bilateral (both ears) vestibular loss. VNG testing is a series of tests designed to document a persons ability to follow visual objects with their eyes and how well the eyes respond to information from the vestibular system.

      This test also addresses the functionality of each ear and if a vestibular deficit may be the cause of a dizziness or balance problem. To monitor the movements of the eyes, infrared goggles are placed around the eyes to record eye movements during testing. VNG testing is non-invasive, and only minor discomfort is felt by the patients during testing as a result of wearing goggles.

      Also look up PPPD (Persistent Postural Perceptual Dizziness)  You should have been given VRT (Vestibular Rehabilitaion Therapy) versus just some eye movements to perform on your own.

    • Posted

      Thanks for the info. I think that is what the doctor is sending me to as I didn't concentrate as usual and forgot what he said but I do remember him mentioning vestibular testing. I googled it and the symptoms are identical to what I am experiencing to the point I am convinced it is that.

      Do you know what the treatment for this disorder is? Is it just therapy and what are the sucess rates and how long does it take? Can't wait to get back to normal.

    • Posted

      No way to know how long it will take to get over it.  It is treated with VRT (Vestibular Rehabilitation Therapy) and some dietary changes.  Look up a condition called PPPD (Persistent Postural Perceptual Dizziness).  See if your symptoms relate to this as well.  The thing sthat I have done over the course of a 2 year recovery is, reduced sodium intake to 2000mg per day, drink plenty of fluids, vitamin D supplement, low dose aspirin each day, gingko supplement, eliminated alcohol, caffeine and chocolate.

      I think that time is the biggest factor.  The body has to find a way to heal itself and that is done by retraining the brain to understand the signals again from the damaged vestibular system.  If you look up PPPD, there is an indication that an SSRI is helpful in treating the anxiety caused by the disorder and that this in turn begins to help to get the mind's focus off of the symptoms.  It becomes a visious cycle.

      I have just seen a few days of normalcy in the last couple of months.  Barometric pressure changes bother me tremendously now.

      Best of luck. 

    • Posted

      Terry, I just read your comments. No one has ever directed me to PPDV before. This fits my symtpoms exactly. I had an initiating vertigo and nausea event nearly two years ago, eventually diagnosed as vestibular neuritis. I underwent VRT and also undertook my own program at the gym and in the water with lots of balance exercises. I saw my neurologist about 2 weeks ago and she sees through the testing that my brain is starting to retrain itself BUT I still have this persistent imbalance and dizziness in situations as described as the PPDV article, and I do avoid going into situations where I know there will be a lot of motion stimuli, such as into the CBD and large busy shopping complexes.  My life has improved over time.  I have made no dietary changes though am rethinking this and will cut out caffeine and alcohol.  My salt I take is pretty low so not going to worry about that.  Barometric changes affect me too, as does stress. I never considered myself to be an anxious person before this all happened but I am certain that this disorder has made me that way, at least for the moment. 

      I will discuss the PPDV findings with my neurologist when I next see her.

      Thank you for sharing this with us.

      Christine

  • Posted

    Yep still here though mine is looking more and more like ms now....but it is equally as difficult getting firm confirmation of that so I am definitely stuck in the limbo camp.

    My advice is to push and push your gp or consultant for everything you can testing wise. If I'd listened to my GP I'd have been popping happy pills for the past year....

    • Posted

      HI Chris. 

      My GP prescribed me with Prochlorperazine maleate to help with the dizzyness. I have only taken it once and it did help although the fuzzyness was still there just didnt feel so unsteady on my feet. Then when I visited the hospital the doctor told me to stop taking them. 

      I do wish GP's had more training with medication as they do seem to chuck you on a prescription and forget about you. 

    • Posted

      Yep I'd agree with that...I've also had 4, yes 4 different consultants diagnose 4 different things....anxiety from the GP, labrynthitis from the ENT, vestibular neuritis from the audio scientist, cervical stenosis from the spinal specialist and possibly MS or transverse mylelitis from the neurologist.

      Maybe I should go and see the faith healer next and sacrifice a lamb to a deity of my choosing.... :-)

    • Posted

      Haha I forgot sub clinical hypothyroidism from the endocrinologist !!
    • Posted

      Haha I agree. You start looking at wonder cures like cutting out Gluten and using Argan Oil. Well latest update is....Vestibular Neuritis. I am quite happy as my MRI came back clear so the doctor said he is sending me off to have more tests...NO PRESCRIPTIONS!!!

      I have had a little read on the Vestibular thing and it sounds like the possible culprit. I do have trouble with my eyes which Labrynthitis doesn't usual come with that symptom. I get really wobbly legs when I go inside the toilets of one of the sites I cover and it has weird patterned flooring and walls. But I do not get this nowhere else....strange...

      Anyway Chris my doctor said it was anxiety last year (having been a major anxiety sufferer for a long period of time) and kept fobbing me off until I went to another doctor who took me more seriously. Thinking of taking the matter further now as maybe an early diagnosis could've prevented it getting worse..

      Anyway had a really good day today. I suffer with Acid Reflux too and even this has stayed at bay (and all on my day off)

       

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