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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

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  • kayla23704
    kayla23704 shishir

    Posted

    I can relate to everything you said all too much sad it's been over a year since you posted this how are things with you now? What gave you been doing to cope?

  • maureen_65564
    maureen_65564 shishir

    Posted

    Did you ever recover?

    I would love to know!

    I'm doing EXACTLY the same thing!

  • carey82
    carey82 shishir

    Posted

    I too have this problem & as much as I want to say it went away. It did not. I initially felt a pop in my ear and it was followed by vertigo every time I moved my head. This turned into panic attacks and being confined to the couch or bed. I saw multiple ENT's & they all advised me I could have a brain tumor or MS. So I had a MRI. Nothing came up. This kept up for 3 weeks & then it was gone! I was so happy as I wouldn't wish this on my worst enemy!

    Until... a month later when it came back full blast - I then went to a nuerologist who found that I had a form of herpes ( chicken pox, shingles) which had erupted in my hear causing labyrinthis.

    It's been 10 years now. I have bad days & good days.. it's a silent disease & I hope that u get better results then I did. Valium helps w the attacks and the nervous system problems. Other then that, I've nvr found anything else. Some B Enzymes seem to help a little.

  • jenny327
    jenny327 shishir

    Posted

    Hello. I am not a doctor by any means, and i do not understand the anatomical workings of the inner ear, but i know that having an earache or burst ear drum or water stuck in the canal, among many other things can really mess with one's EQUILIBRIUM, which can affect balance, make you feel dizzy, disoriented, and all manner of just not right... has this come up when you have talked with doctors? It could be an inner ear problem? Maybe? Sorry if this is not helpful,

    Jenny.

    • carey82
      carey82 jenny327

      Posted

      Thank you for your advice and trying to help. Unfortunately my disease is much more advanced then that. If only it was just water in my ear... but again, I thank you.
    • kim34950
      kim34950 jenny327

      Posted

      Hi Jenny, How are you doing? i was diagnosed a few months ago, had a caloric test reveal weakening in my left inner ear. I wanted to write to people who had this for any recommendations or to see how they are doing. 
  • melissa04000
    melissa04000 shishir

    Posted

    Just curious does labyritis or however you spell it not ever go away? What are you symptoms, trying to figure out what's wrong with me

  • kim34950
    kim34950 shishir

    Posted

    Hi, i know this is an old post. Just wanted to see how are you doig now?
  • carey82
    carey82 shishir

    Posted

    I too, have had all the same symptoms as you & after so many different tests- by a elimination method, they came to conclusion if labyrinthitis ( mine caused from shingles I had when I was 14 years old). I wish I could give you better news. The disease picked up when I was 23 & in Med school, I had to quit school, find a work @ home job & am now 35 & still have my episodes. Some so bad I am bedridden. I almost did not have a child because  of this but we decided to go for it & I spent 4 months on bed rest &disability & had my baby 5 weeks early - she was 4 lb 11. 17 inches. She is fine now.  I again wish I had better news. But talking about it w people who know what I go Thru got me Thru the hardest parts. Silent diseases are the worst! 

  • rachel59464
    rachel59464 shishir

    Posted

    I am in aa similar position...n..after seeing the ENT consultant he told me what I had expected Labyrinthitis/ Vestibular Neuritis. I was advised to retrain my brain and told my doctor may give me anti viral meds. I could not wait for this so did some reserch. I started taking the suplliment cats claw. I stopped taling the betahistine and anti sickness pills. Within 2 days the fullness had gone...the sickness diminished and I felt much better. I still have loyd tinnitus and thoughout the day I am unsteady on my feet. I will keep taking the cats vlaw three times a day and hope for more progress in my recovery. I have no idea how long that will take...but I can now function and getting up in the morning is so much easier...I used to feel like I had the worse hangover. Its worth giving the cats claw a go..it has no bad effects. I hope this helps you.
  • gabrielle84030
    gabrielle84030 shishir

    Posted

    Hello shishir. I read your entire post and must say that I am shocked that no blood tests have been done nor a check for a possible clot from your neck to your ear. I am no expert, but I feel if these are checked as well, the gp's can help you better.

  • joy25954
    joy25954 shishir

    Posted

    I have vertigo it flares up I turn to left to sleep dealing with 4 years 
  • biljanas
    biljanas shishir

    Posted

    Hi. I know this post is long time ago but mu husband has the same symptoms and the same situation applied. Could you tell me did you find any cure,do you find something that can improve this situation? Thank you.
  • sylvia0
    sylvia0 shishir

    Posted

    Everyone unfortunately seems to have different/or similiar symptoms. I had flu three weeks prior to waking up with no balance and extreme light headiness. My coordination and cognitive abilities were impaired in so much as I had twisted logic sometimes in the way I perceived things. I could not type or write. I had to use a stick after the acute phase past (three months), it was a full 10 months before any significant improvement was felt and I could walk again. However, my brain merely compensated and had no true executive function (walk and hold myself up without thinking). I had spent 9 months isolated at home as illness made me rather agarophobic in nature.

    I went to ENT, had an MRI and nothing was found! I now await a referral to Neurology as a definitive diagnosis is yet to be found. Even now I still feel light headed, still have Nystigmus , and still feel a little unsteady. People recover at different rates as a true diagnosis is difficult to find. However, a majority do recover in less than a year. There is light at end of tunnel and you will feel much better eventually.

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