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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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  • megb4387
    megb4387

    Posted

    Hey Shishir- thanks for your reply. Who finally diagnosed it as VN? I was diagnosed with Labrynthitis from my regular doc and she said it just works itself away eventually. I actually just posted with my experience leading up to this. I was SO scared when this first started but I am finding it easier to adjust to each day. I thought I was in my third month of this but when I went back and did the math it's actually just over a month. I hope you don't mind if I ask you some questions.. but I don't really have anyone to talk to about this.

    Did you feel lightheaded throughout this even when sitting down? Even as I type this I am getting the surges of weirdness pass through my body as if I am floating here. Do you have any recommendations for anything to help me deal with this? Did you feel as if you couldn't focus right on ANYTHING? It's affecting EVERYTHING I do.. I am miserable. Did you have a Cat Scan or MRI? I am so happy I found you out here on the web. It's scary that nobody really understands what this is like.

    • christine42810
      christine42810 megb4387

      Posted

      Hi there, I feel lightheaded most of the time, and sometimes completely exhausted. Comes on suddenly.  This is the most horrible condition. A friend of mine, a medical researcher, describes this condition as "evil". I tend to agree.

      i did have a time there where I felt totally miserable and anxious, and I am not inclined that way normally. The physio and specialist all assure me it will improve and, as the neuro otologist said, and I have to accept her prognosis, that everyone gets better on their own time, you can't predict, you just have to know that it will improve.  

      Did you have the tests with the goggles and the computer?  The last time I had this I was told that my brain had finally started retraining itself.  So I'm on the way and hopefully it will happen. So I stop myself feeling miserable by hanging on to this fact.  Thank goodness our brains can retrain.

  • megb4387
    megb4387

    Posted

    Oh I forgot to mention I also feel like at points a piece of my face goes numb, or that I am weak or losing strength but I honestly think this is my anxiety taking over.
  • megb4387
    megb4387

    Posted

    I also forgot to mention that my ENT did a hearing test and then took only about two minutes to look in my ears, up my nose, and down my throat. He did not use a scope or take his time at all. He never even mentioned Labrynthitis to me. Is it possible to still have this without him even looking far into my ear? He just kind of did the quick peek to see if my ear drums were inflamed which they're not.
  • nicky56389
    nicky56389

    Posted

    Hi,

    I am 39 and for the last 10 days I have been so frightened because I too am experiencing some of these symptoms.

    Firstly I was feeling just under the weather with a bit of a runny nose when my left ear felt like it needed to pop. I had a little rest for a couple of hours but when I woke I felt ok but still not right. I was talking to my daughter when all of a sudden the room started to completely spin and I lost control of my eyes! Oh my goodness I was petrified.

    I obviously panicked and my husband came to assist me, I calmed down and felt ok but shaken by my experience. As I hadn’t eaten my husband thought maybe I should eat something and that it sort it out and that maybe my sugar levels were a little low. A couple of hours later I went to bed to be woken only hours later by the same thing, we of course went straight to accident and emergency at the hospital.

    With very little examination I was diagnosed with having vertigo caused by a viral infection and sent home.

    Since this point I have had the dizziness on and of and have on one occasion been able to lay flat in bed, the remaining days I have had to sleep sitting up as laying down just spins me out, I have been having heart palpitations when I have any dizziness, and I too have experienced the numbness in my arm and cheek. I have had blurred vision on and off and my eye are been very jumpy. I have felt generally disoriented am also having problems sleeping, as I start to drift of to sleep I am woken with the feeling of falling. I went into the supermarket to only have a sensory over load and had to walk around holding my husband’s arm.

    I am sure I am not alone but obviously keep thinking the worst, I have attended A&E a couple of times in a panic, as well as the out of hour emergency doctors. They have said that my sensory tests are normal and that it really is labyrinthitis .

    I am so scared at the moment and felt alone until I read these posts. Can any of you tell me if you too have had problems sleeping?

    The anxiousness is a big problem at the moment and I keep crying out of fear what should I be expecting?

    Nicky

    • Fudgeybear1
      Fudgeybear1 nicky56389

      Posted

      Hi, I have had problems since 2006,when I had a sudden dizzy attack,I went to the doctors and he said it was anxiety and gave me diazapam,I knew it was something else as I d never felt so ill.i was sick up to ten times a day I couldn't t even keep water down,I had every test known and each time told it was a virus and anxiety,it wasn t until 2012 I was diagnosed with labythrinits,it has ruined my life I ve just turned 45 and I feel so trapped by this condition.i was just starting to feel loads better then  3 months ago it came back i woke up one morning and I couldn't t stand up,I spent 2 days in bed I couldn't t even sit up!! So I m back to square one!! I hardly go out of the house again I'm so anxious because of the strange off balance feelings I get,I always feel sick and I have problems sleeping,my body never feels relaxed.a week ago I was given the cawthorne cookery exercises to do,they have helped with the foggy head and vertigo feeling,but they re making me feel very sick and I m still off balance and anxious,but it has only been a week.i have an eleven year old daughter and I've missed so much of her life,my husband and elder daughter have helped so much.this condition is so cruel.i ve felt so alone until I found this site.most people don t understand,I get told i look we'll,that should give my head a shake and that I don t look like I m dying!!! I wish they could walk a day in my shoes and they might feel differently.i would love to hear any advise you might be able to give me,I look forward to your replyxx

       

    • use2bnormal
      use2bnormal Fudgeybear1

      Posted

      Hello...I was just wondering how you're doing and how long it's bwen now? Thanks??

    • gillian93591
      gillian93591 use2bnormal

      Posted

      Hello, still not great. I've had VN and Vestibular migraine for four months. Me specialist told me 50% of people who have VN go on to have Vestibular Migraines. I used to have body swaying. When I sat down it felt as though I was swaying like on a boat. The VR exercises have calmed that down but the worsed thing I have is dizziness in my head.

    • gillian93591
      gillian93591

      Posted

      Also when sitting back if I look down to my phone or a book. I go all woozy like I have to hold on to something. That is the positional head movement vertigo which is linked to my vestibular migraines. That is horrible. When going out for a meal I feel like I'm one of those bobbly heads u get for your car. I'm more anxious when in public. I do find walking is good. And relaxing in my garden swing chair with my head back. I do 5 times exercises per day. Drink lots of water and take fresh ginger, riboflavin 400mg and magnesium 400mg. Hope your ok. Xx

    • charlotte57794
      charlotte57794 gillian93591

      Posted

      50%!! Thats a lot!

      How are you feeling these days?

      I have been diagnosed with VN but waiting for a neuro appointment becayse its possibly VM too sad

      Did you get rid of it? Is that even possible?

      Any advice you have would hugely appreciated! smile

  • shishir
    shishir

    Posted

    Hi Meg and Nicky,

    Meg first - My condition was diagnosed by an ENT specialise, I would recommend you push your GP for an ENT referral, the wait can take forever, mine took over 6 months with the entire process taking 9 months so do it ASAP. Labyrinthitis and VN are very very similar. PLEASE READ this http://vestibular.org/labyrinthitis-and-vestibular-neuritis - it explains the difference between the two quite well.

    I felt lightheaded 24/7 when this started, eventually it dies down or you get used to it (due to your brain compensating for it) so it feels like its not there. I still have it on a daily basis, but I only really notice it if I try or if I am really tired. Majority of the time I feel like its not even there. And yes I felt this sensation sitting down, standing up, lying down etc. so position never affected it for me. Though sudden head movements did make it worse. I understand what you mean by focus, my vision felt terrible especially when I was on the laptop, there was a good website I found which explained the reasons behind it but unfortunately I can't find it right now. But to summarise, its just a secondary symptom of this condition and it too slowly disappears.

    I had every test under the sun done..MRI, EKG, ECG, CATSCAN, VISUAL TESTS..the lot and ALL of them came back normal. After this my ENT asked for a balance test to be done, that was what turned it all around for me, this test lasts about 2 hours and tells if you if you have an inner ear problem, which was the case for me.

    The facial numbness, trust me that is 100% anxiety related. I had always been a calm person before this with 0 history of anxiety, but the first few months after this condition it was just horrible. It got so bad I had to go to A&E because it felt like I was dying. Personally, I believe you need to go through this so that you realise what it is before getting better.

    To summarise my recommendation would be

    1- Push for a Balance Test ASAP. Do it today.

    2- In the mean time do more activity than you have been for the past month, this includes stuff like walking around the house/garden. Throwing a ball up and catching it (for hand eye coordination and head movement). Cooking. Very mild exercise. Avoid as much TV/Laptop as you can to prevent you from sitting still. There is no doubt you will feel worse after doing this for a few days but that means that your brain is compensating for it. Continue to do this until you feel much better.

    3- Do Yoga/Meditation/Breathing exercises for anxiety. I never believed in stuff like this and laughed at people doing it, but honestly this helped me so much at the start I take all my criticism back. It takes about 5-15 mins a day and you truly notice a difference.

    4- Have patience and dont get depressed. If someone had told me this at the start my recovery couldve taken a couple of months instead of almost a year maybe. I had some really dark thoughts when this condition was at its worst, just tell yourself that the human body is a very complex and smart thing, it will heal itself eventually. Even if it takes a year for you, its still better than having it forever.

    Nicky- All of the things I have mentioned for Meg should hopefully help you too. ESPECIALLY about the anxiety. For me personally, the anxiety symptoms were far greater than my VN symptoms for a large proportion of the time, it exaggerates all your normal symptoms. Please try out the methods to alleviate your anxiety, it will definitely help.

    Personally, I didn't have too much of a problem with sleep, in fact that was the only time I felt free of these symptoms. I believe once again that is to do with your anxiety, each person has different types of anxiety. I couldn't stand crowds or hot temperature for example. The supermarket thing you mentioned happened to me all the time as well and its the worst feeling ever.

    One last point, I have been told your age also plays a factor, so the younger you are the quicker you are likely to recover. But this isnt the sole factor, according to the doctors I should have recovered in weeks but once they determined the extent of damage in my ear they realised why it took so long. So fingers crossed, you two have less damage than me smile.

    I hope that helps, please feel free to ask me more questions. I remember how I felt at the start of this condition and I know how much talking to someone could help. I will try to check these forums as much as I can, but if you want a quicker reply, private message me your e-mail and I can talk to through there as I check that quite often.

    • jessica39365
      jessica39365 shishir

      Posted

      Hi,

      I was just wondering how ur doing these days and how long it took u to recover. I’ve been dealing with this for 2 months and I feel like there is no light.. i have constant pressure in my ears and head... just needed some hopeful news. Thanks

  • megb4387
    megb4387

    Posted

    Hey ShiShir- just sent you a private msg with my email address. Would love to talk further. Thanks!
  • nicky56389
    nicky56389

    Posted

    Hi,

    Thank you for your reply.

    Just knowing what I am experiencing is similar to others is reassuring, the dark thoughts of brain tumours etc. etc. drives me crazy which is probably setting of the anxiety. I suffer from claustrophobia and the thought of tests fills me with fear, I had a MRI for a problem with my back which was so traumatic it was horrible.

    Thanks again x

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