Labyrinthitis Update – 12 months.

 

This time last year I was in the throes of the acute stage of Viral Labyrinthitis and I am writing this partly for completion of the series of blogs and partly to encourage those who are currently suffering that there is light at the end of the tunnel.  In my case that tunnel was longer than average but that’s one of the issues with this particular illness – it is usually different for everyone.  So this is where I’m at now.

The Good

I am 99.9% recovered!!

The vestibular rehabilitation exercises I was given by the physio really did work.

I saw a specialist who confirmed that I do not have Meniere’s disease.

I was given the all clear to drive and I am able to live life as normal: work, rest and play.  I’ve even managed to go on holiday.

The Bad

Decompensation days!  The damage the disease causes is permanent, your recovery is essentially your brain compensating for the damage.  Periodically I have a day when things aren’t quite 100% and when I go outside I notice that the world is moving as if I have no shock absorption.  This is the only way I can describe it as it is not feeling dizzy but it is feeling ‘not quite right’.  Thankfully this usually wears off after about 5 minutes so I can just go with it.  These days are also becoming less frequent over time.

Keep hold of the vestibular rehab exercises as you can keep doing those along the way if you feel you are not making progress and it  also helps shift any residual decompensation symptoms really quickly.

I can’t drink as much as I used to – I love red wine but I have had to rein it in.  Alcohol makes me dizzier faster these days which is not that surprising considering my ear is ‘buggered’ to use the venacular.

I still find some activities hard: hoovering makes me feel rather light headed.  I think the nature of the back and forth movement maybe effects me in this way, it is getting easier so I just keep forcing myself to do it.  However, I hate hoovering and I have to force myself to do it anyway!

The Ugly

Pain – I still get some ear pain but it is less severe and less often.  I asked the specialist why I got pain and why it is in both ears and the response was, ‘it just happens with some people and will go in time, we don’t really know why some people have it and some don’t’. So essentially I was just unlucky.

Fear – this is the worst thing I think for me now.  Every morning I wake up and open one eye tentatively to check if I am OK before I open both of my eyes to get up.  I am hoping this will also lessen in time but considering the severity and duration of my symptoms it is not that surprising.  I am also petrified of catching a cold since these are often said to  precede labyrinthitis; this is despite the fact that I have had probably thousands of colds in the last 50+ years and only had labyrinthitis once! It is worth noting here that just because you have had it once  it does not make you more likely to have it again.

My top tips:

Rest.  A lot.  In the early stages you have little choice but to lay down however once you are able to get up and around even doing small things will make you very tired. Your brain is using a lot of energy it never used to have to use to keep you balanced.  Being tired will also make your symptoms worse.

Don’t rely too much on pills.  The pills you will get in the initial stages of the disease are essential to get you through the first few days.  Take them.  However bear in mind that these are vestibular sedatives – they calm the inner ear – if you take them for too long they can and do delay recovery.

Do as much as possible once you are able to walk around unaided.  Potter around in the house.  If you can get someone to take you outside.  It is terrifying and you will probably only get about 100 yards, I know I did. But work on it, do a little more each day.  It will speed recovery.  However do this safely – don’t put yourself at risk of falls.  I went out accompanied for about a week, then I got a walking stick.  I was able to walk the dog with a stick on my own for short distances after about 2 weeks.

Insist on a physio referral early on and offer to take a cancellation, they often have waiting lists and the earlier you can start on the vestibular exercises the better.  I got started on mine at week 4, the usual wait is about 6-8 weeks where I live so cancellations are your best friend.

Get help – use your GP!  Also have a chat to your employer.  I went back to work after 5 weeks on short shifts. My work involves going up on steps and ladders so I also made sure I could be excused from doing anything like that.  Going back to work really sped up things for me but I did have the advantage that I can walk to work from home.

 

So that is the end….I hope for ever but who knows.  If you are currently suffering, be assured that you will get better it might just take a while.

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