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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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  • London2016
    London2016 shishir

    Posted

    Can I ask does anyone find certain triggers? I have a few like coffee, bright lights and lots of different noises i.e shopping centres.
    • JaGuR
      JaGuR London2016

      Posted

      Finally got to see an ent, felt a bit like I was fobbed off, said it was migraine associated vertigo and put me on Endep.

      looked in my ears said they were fine and didn't believe my hearing test, that I had hearing loss at low frequencies and ordered me to have another test done.

      Said the tinnitus and hearing loss were unrelated to my other issues which he was adamant was mav.

      Maybe he is right, reading a lot of the material he gave me could suggest mav, but I have had it 12 weeks every day and heads aches only the last 6 weeks.

    • gillian76726
      gillian76726 JaGuR

      Posted

      Sorry to hear this and that this is a common experience for a lot,of us. ENT,s are not the best drs for our condition and most of them, will,diagnose MAV as they are not trained in the Vestibular system (That,s another 4 years training)! Ear,,Nose and Throat, that is what an ENT is. i wasted a whole,year from an,Audiologist (Progressed from ENT to that,,so dont bother if your GP tries that one) who was convinced i had MAV,,Ididn't. ,We all,get headaches, well a lot,of,us do.  these are mostly brought on by stress and oftenmiur eyes and neck, as they are compensating for the vestibular system that isnt working properly.  If you were having migraines (not headaches) in a regular basis,then maybe, but by the sound of it youaren't. ,I also have Tinnitus, had that a few years before the Dizziness, and if you researchni,,Tinnitus ismoften connected to,people,with our problem, so,iMdon't agree with that either. 

      If mwere you,,i,would go back to your GP, tell him or,her you are not at allhappy  with this diagnosis, pount out you do not have migraines and never have and want to be referred to a Neuro Otologist. lOok up,your local hospitals and find which one has one so you can have that knowledge when you see the GP.  Good luck

  • hazel42903
    hazel42903 shishir

    Posted

    Don't get despondent as it will go away so try and get on with your life. I have had vertigo since my thirties so I know how you are feeling. I was clear for around 14 years and then it came back with a vengeance but not bad tbh. Years ago I was in bed for 2 to 3 days and violently sick but I was prescribed Stematil and find that helps me a lot. I always carry them with me wherever I go. I was diagnosed with MD and told by the consultant I was one of the lucky ones!!!! Having a bad time at the moment and my GP has tried to "reset my balance" as I was beginning to feel quite depressed. I believe you can have this done at a clinic in your hospital so maybe you should tell your GP you want to see a Specialist and paint the worst picture to enable you to get an early appmnt and the reassurance you need. Hope this helps❤️
  • karen09081
    karen09081 shishir

    Posted

    I too have had all the things you have spoken about with your health. I have brain fog and can't remember things anymore such as small words. Very dizzy, pressure in my head and left ear pain with pressure. I have had 4 small seizures and now have gotten anxiety trouble, constant throughout the day for no reason. Recently got high blood pressure and burning tongue  symptoms. I feel as though I'm so dizzy or like in a bubble I can't function daily things. I've been going to doctors for this for 2 years and more symptoms keep coming. I'm worried that I'm going to lose control of my body because so weak and tired all the time. I feel yur pain, I pray that some doctors will be able to tell me what happening to my body.
    • London2016
      London2016 karen09081

      Posted

      Hi Karen. Dont worry you are not alone. I too experience the same symptoms. The out of control feeling is horrible and just the other day I had to repeat what a lady at work said to me about 5 times as I couldn't hold the information for too long and she got frustrated with me. Again makes you feel stupid and worthless but you just have to get on with it.

      I agree with the recent posts about getting exercise. I recently found that light exercise helps although I still felt issues with balance I wasn't all over the place. I went to Amsterdam recently and I was shi**ing a brick about the flight I will be honest but I was fine. Once out there we done a lot of walking and taking in sights so my mind was away from the anxiety I suffer on a daily basis and I was out doing mild exercise, although being in crowded places was the same. I have found that exercise helps and anxiety makes it 100 times worse. Also once you have an attack note down what you ate or did before. I also found coffee makes my balance issues worse (although I am definitely not giving that up...you only live once and all that) Being on my phone for long periods of time doesn't help too. Try to avoid crowded places and bright lights and for some strange reason really small rooms makes me lose balance very easily I.E toilet cubicles. Hope this helps you out and I hope you make a speedy recovery.

  • karen09081
    karen09081 shishir

    Posted

    My doctors have done many testing on me and I show positive for EBV virus. It causes all kinds of issues even cancer. Life has been horrible

     

  • jim1971
    jim1971 shishir

    Posted

    Hi Shishir,

    I know that you posted this a long time ago and I'm hoping that you;ve made a full recovery.

    I came across your post in google and it you describe exactly the same symptoms as I'm currently having (and have had for 3 weeks).

    The dizzy, "vacant" and exhausted feeling is driving me mad and as you said it's the anxiety that is the worst thing to deal with. I have neve been a worried person or suffered from anxiety before - I'm 44 - but this has knocked me for 6....I feel like I'm going mad. How did things resolve themselves for you in the end and what tips do you have for dealing with things?

    Thanks for posting in the first place and for any advice you might have.

    Cheers

    • chris1303
      chris1303 jim1971

      Posted

      Hi Jim

      Fellow sufferer here, about 14 months in...the only thing I can say to help with the anxiety is that when you sub consciously realise you're not dying, though it often feels like you are, it does ease. I strongly suggest you exercise as much as possible, it's slow progress but walking and cycling have really helped me. Do as little or as much as you can, it's the one thing that has kept me sane while the Dr's have done their best to make me feel otherwise!

      Wishing you well.

    • pinky25194
      pinky25194 jim1971

      Posted

      Hi Jim

      I agree with Chris. I've had this for about 18 months and my anxiety was through the roof!! I recently went to see yet another therapist and now I have to do everything I would have done when I didn't have this. So I have to keep as active as I can so I go walking, work, do the shopping etc. when I'm feeling very anxious I get up and do something to try and take my mind off it.

      Hope it helps 😊

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