Labyrinthitis/ Vestibular Neuritis...Please Help

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 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!

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!

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!

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.

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 .

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!

I have sent you a message, hope you get it

Received, thank you.

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