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 there,

    I had Vestibular Neuritis last winter and you truly have my sympathy. It is horrible and very disorientating as well as debilitating. It is great news you have a referral to an ENT, and I would strongly suggest pushing for referral to a Physio for VRT. It is unpleasant to do, but it does eventually work. I did between 5 and 6 exercises, each for one minute, twice per day. At first this would leave me feeling totally dizzy and out of it, sometimes for an hour or more, but over a week or two they would get easier, then I'd be given harder ones wink So, it takes quite some time - several months in my case, I believe the average is around 3 months after you've started.

    I also found I had a lot of problems with concentration during this period and was much more tired than usual - both side effects of your brain effectively needing to re-train itself. I was advised that whilst it is good to get sufficient sleep, and that I shouldn't go to work and should try to avoid stress, it was good to keep busy and particularly to keep moving. I have 3 young children so that wasn't hard although stopping work for an indefinite period was very stressful. The exhaustion remained for another couple of months after all other symptoms went, so in total I was not myself for around 10 months, but that doesn't mean it will take that long in you - I suspect you are younger than me (I'm 41) so hopefully your brain will do a better job of re-training..

    With regard to the anxiety/depression, it is very common with this condition as it is so unsettling, horrible and the length of time it is going to take is so unclear. I actually work professionally with anxiety/depression and would suggest that you go back to your GP to discuss that as a separate issue. There may be some counseling or other psychological treatment available at your GPs practise, or you could get a referral through the IAPT initiative, or you may decide that you would like to try some of the medications that are available. Either way, don't criticize yourself for this - it is normal reaction to an abnormal situation and is I agree a very hard element. I turned into total grumpy mummy and as a normally optimistic and bubbly person, I think everyone around me was staggered at how low I was.

    Good luck!

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    • Posted

      Hi busymummy,

      Hope you are well now. I was in hospital for Vestibular Neuritis about three weeks ago, still not completely back to normal and finding it very difficult to concentrate but started working today. Have you had any vertigo again since you wrote here? Also have they done MR to rull out any other conditions such as MS?

      Take care

       

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  • Posted

    Hi busymummy,

    First of all, thank you very much for your reply. It may not seem like much, but every reply I receive makes me feel a lot better to know that other people have been through this too and it really gives me some much needed comfort and support. So thank you very much for that.

    I should have mentioned my age, I have only just turned 23. Due to sheer frustration and annoyance of this condition, I may have left out some information from my original post in a hurry to put this post out there. If other people also reply, please ask me for anything I have missed if they require further info.

    Regarding your reply, I am sorry it took as long as 10 months for you and I am hoping I recover sooner too. May I ask if you are completely back to 100% now? And if so have you had any repeat attacks of this condition since? You mentioned the doctors asked you to avoid work/stress, did your work give you time off? I only ask because right now my job hunting is come to a stand still, however when I do start working and if I am unlucky enough to suffer from another attack, it would be useful to know how to deal with it.

    I have read a fair bit about anxiety/ anxiety attacks as I had never suffered from it before until I got labyrinthitis. I have read that medication isn't the best option (in conjunction with labyrinthitis) as it may delay the recovery process, however I will ask the doctor about this. However, as my appointment is still 5 weeks away and as you say you work professionally in this area, can I ask if there is a non-medicinal way to deal with it temporarily? I have read articles about 'belly-breathing' and such but am not sure how effective it is.

    Once again, thank you for your reply and thank you in advance for any further information!

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  • Posted

    Hi shishir,

    I was thinking you should go back to your GP to talk about anxiety as a potentially separate referral (just realized I don't know where you are - I was meaning GP as in the UK system, but basically your first line person). I doubt the ENT will have much to say about it that is helpful. In the meantime you could consider some sort of self-guided approach. There is the most evidence for CBT (cognitive behaviour therapy) but mindfulness has also been shown to be very helpful, and actually might suit your purposes better. The focus is on allowing yourself to be in the moment - not worrying about/going over things gone or that might come - but also not judging yourself if/when you do find negative thoughts come in. Jon Kabat Zinn is the leader in that field, although if you prefer a British accent for guided meditation you might prefer Mark Williams.

    I would say I am myself almost all the time now, but I get more tired than I used to be. I think my recovery was slower than it might be for others because I couldn't avoid stress - having three small children is necessarily stressful at times, and also we had major childcare difficulties right in the middle of it all. Furthermore, my work, which I gradually returned to after about 3 months, is very demanding mentally, which in retrospect probably slowed things down. But in terms of positive mood, I do feel my normal self again now!

    all the best!

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  • Posted

    Hi busymummy,

    Thanks again for the reply. Sorry, yes I am from the UK (another missed bit of vital info) so I will bear that in mind when I see the doctor next. I will also look into CBT and the works of Jon Zinn, this information is much appreciated.

    It is definitely reassuring to hear that you are back to almost 100% of yourself and I'll try and remember this whenever I feel down.

    Just a side note, I forced myself to sort of throw the ball around in my back garden, almost a sort of therapy, to keep moving. I felt dizzy the entire time, but the anxiousness wasn't around (probably because I knew I was at home and not somewhere where I wouldn't get help). I did that for about an hour or 2 and I feel much better now (in terms of anxiousness and maybe even slightly to do with the dizziness).

    Thank you once again for your replies.

    In addition, I would like to ask everyone on the forums a couple more questions which I missed out in the original post. And I would also appreciate any further responses/stories of people who have been through a similar situation or are currently going through it now.

    1- I mentioned in my original post that both times my labyrinthitis episodes were triggered, was in the gym (doing the same exercise). Is there any chance that it could be something else that I am suffering from?? I don't recall having flu like symptoms associated with a virus both times so maybe there is a small chance it could be something else, though all the symptoms point to the contrary.

    2- I also mentioned that my ENT appointment isnt for another 5 weeks. Does anyone know roughly what I should expect? If i try and stay mildly active will my symptoms be manageable? Or should I think about going private?

    Thank you in advance once again.

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    • Posted

      ENT is a waste of time, they do not have a clue, doctor just used a scope to look in my ears and said there is nothing wrong, they cannot be sure by this method as they cannot see the inner ear damage caused by the virus  ater the flu I had. Now I have had a referral  for an MRI as he thought it was a brain problem but i am not convinced. My Cerebellum is fine apart from a minor wobble when I stand with my eyes shut however daily this improves. yet no pain or pressure in skull, or sickness or fatique (apart from exhaustion keeping myself upright which i still attribute to vistibular damage). My cognitive functions are normal and intact, no slurred speech. You should be educating yourself of the body's many processes to understand better what is going on on the way to a proper diagnosis. i appreciate it is hard to know the right person tp speak to.

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    • Posted

      Absolutely agree Sylva. I've had the same nonsense for 7 years! I,learned about ENT's early on. They dont study another extra four years that a Neuro,Otologist has too, so how they think they can dismiss,people by looking in their ears beats me!! As their title denotes, Ears, Nose and Throat. That's it!!

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    • Posted

      Hi Shishir,

      I've had ongoing dizziness and other symptoms for 2.5 years and BPPV sine March when I woke in the night not even able to raise my head. This has subsided with just the original dizziness etc.

      Without elaborating on my own condition, I just wanted to say that I had my first ENT appointment yesterday. It's taken since last April to get this and I only got it now because of kicking up a fuss and a cancellation. I had admittedly asked for a specific consultant who had been recommended, and when I got there I had to wait extra long to see him, but it was worth it just because there were 2 other professionals in the room and they seemed to understand, were very thorough in the questioning and basic tests. I have been on stemetol for months and now coming off. They did the Epkey manoeuvre for the BPPV. Though no sign of it now, categorically told me I've had Labyrinthitus in the past which brought on the BPPV. Unfortunately I was told that the Labyrinthitus has left a permanent balance problem and will get an appointment re rehabilitation.

      This obviously isn't good but the main reason I'm saying all this is that, I'm glad to know what I'm dealing with and felt the diagnosis was considered.

      I'm not saying all ENT experiences will be like that but feel it's important to go into your appointment with cautious positivity, as well as knowing how you are going to express your condition.

      Good luck with your appointment and the outcome.

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  • Posted

    Hi there,

    I'm now entering my 7th week of vestibular neuritis and this week has been my worst to date. I was managing to get about driving and even shopping. I am not taking any medication as for me it has not worked.A week last Tuesday I started vestibular rehabilitation therapy and although it was helping I am now worse than ever . My symptoms are dizzy and nausious but I have also started getting very anxious, cold clamy, shaking not sleeping, which is bad because I get so tearful. I do suffer with anxiety anyway so I am starting propanalol. My therapist said this is quite normal when you first start therapy and just do what exercises I can manage.It is the most horrible thing to have, but I have to hold on to the fact that I will get better eventually,I know it's early days yet .

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  • Posted

    Hi Paloma,

    Thanks for your reply. Not exactly what I wanted to hear but I suppose its a more realistic situation. It seems like we're both at similar stages in terms of time (7th week) but to me it seems like you're doing much better than me, I can't even imagine driving right now for safety reasons plus I don't think I would be able to anyway. Similarly, the thought of going to a shop scares me...I went for a haircut a couple of weeks ago and almost had an anxiety attack just waiting there!

    I am glad to hear that you have started on VRT (but not so glad to hear that you now feel worse off!), that definitely makes me feel more anxious for my treatment. Could you please please keep me updated on how your condition progresses with VRT (as you say its still early days but I would really like to know of it helps). In addition, can I ask how active a typical day is for you, i.e. do you work full time? house chores? etc. etc. just so I can compare it to my lifestyle at the moment which is very sedentary as I have just finished uni.

    Thank you!

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  • Posted

    Hi Shishir

    I have sent you a message, hope you get it

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  • Posted

    Hi Paloma,

    Received, thank you.

    Please stay in contact.

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  • Posted

    Hi Shishir- how are you feeling now? I am on my third month of this. I was wondering if you ever fully got back to normal?
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    • Posted

      Unfortunately I'm coming up to two years and still not back to normal, I don't think it will ever go, can't get any help from drs they just suggest tablets which I had in the beginning and didn't really help, i feel I can't turn to anybody for help 
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    • 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.

      Address: Eastern Ave, Southend-on-Sea, Essex SS2 4XH

      Phone:01702 462944

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